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Title: Who is who here to the newcommers Post by Svenn on Jun 15th, 2005, 5:28pm http://www.netsync.net/users/charlies/gifs/Svenn-1.jpg Thats me last time i was hospitolised to ch. Im 51,been a clusterhead since last half of the 80s. Married and 2 boys. Had a heartattack back in Nov,01 My wife is calling me a bigamist sometimes bc im married to her but at the same time i feel married to this beautiful family here in Clusterville. This family here you can trust with your life. Thats about it on me So just come on everybody. Just introduce yourself to the newcommers with a pic of yourself and a tiny story aside Svenn |
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Title: Re: Who is who here to the newcommers Post by don on Jun 15th, 2005, 7:45pm Me? Scewed from birth. http://img.photobucket.com/albums/v388/bgull2/Flav.jpg |
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Title: Re: Who is who here to the newcommers Post by ClusterChuck on Jun 15th, 2005, 9:17pm http://www.clusterheadaches.com/nashville/nashville105.jpg Myself (copping a feel), DonnaD, Bluemeanie, and Alleyoop 55 or so years old; 27 years with ch; last 7 years chronic; official ch.com ass grabber; almost 2 years since finding this looney bin (don't know how I survived before then); have met many crazy clusterheads so far and hope to meet many more; married 30 years, divorced since Jan 13, 2005; 4 brats, 2 boys, 27 and 26, two girls, 19 and 17; other medical problems (as if ch isn't enough!): several heart attacks, sleep apnea, old bones and joints, no memory (CRS). All I can say to newbies, is Welcome to the looney bin !!! Also, if you EVER get a chance to meet another clusterhead in person, DO SO!!! You will never regret it, and they will stay with you FOREVER! You will never meet a bigger bunch of lunatics (except myself) or people that care as much and will do anything for you. You will NEVER find bigger hearts than you will find in this family! Chuck |
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Title: Re: Who is who here to the newcommers Post by sandie99 on Jun 16th, 2005, 1:50am Hi there! Welcome to ch family! :) I've lived with clusters since fall 2001. First episodic, then chronic, then episodic again, then PF and now back in cycle. I'm originally from Helsinki, Finland. Currently I live in Jyväskylä because of my uni studies (I'm working on my Masters in journalism). I travel to Helsinki and Viitasaari every now and then. When I'm not spending time with my wonderful boyfriend (who is my best ch supporter outside the board) and our 2 guinea pigs, I'm always writing something, reading, doing pilates, listening music (mostly country and rock), walking, watching movies... and naturally in here! ;;D Can't wait to meet you all!!!!! ;) Best wishes & PF days to all, Sanna/sandie99 |
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Title: Re: Who is who here to the newcommers Post by maffumatt on Jun 16th, 2005, 7:08am http://www.imagestation.com/picture/sraid173/p19a82527eb222112250c80df2c94bd57/f3bbf31d.jpg My name is Matthew and I have been a pest on this board for around 5 months now. I have been made to feel as if I am at home here since the beginning. I am 32 and have had CH for around 7 years. I am happily married to the only woman who was kind enough to take pity on me, Mary is the best thing that has happened to me. She is a great supporter and an even better friend. I have 2 kids that are a pain in my ass to match the pain in my head, but I wouldn't have it any other way. Life is better siince I have found CH.com. I love this place and the people in it. |
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Title: Re: Who is who here to the newcommers Post by ghost62 on Jun 16th, 2005, 9:18am http://tinypic.com/1p9yf5 Im 42, Married, 2 sons, CH as long as I can remember. I guess there is good from bad here because without ch I would never have come here and started causing trouble. Ok I dont always start it but I do like to stir the pot. There is alot of great people here and there is alot to learn from them. WELCOME HOME!!! ;;D ;;D ;;D |
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Title: Re: Who is who here to the newcommers Post by Gator on Jun 17th, 2005, 9:20am http://www.brightok.net/~mnjday/miketfh3.JPG Howdy Y'all!!! I'm Gator aka Mike I'm 42, married and dad to 3 boys - 21, 18 and 16 I am a Primary Chronic clusterhead and I'm relatively new to the game. Mine started in November 2003. I found this website on March 23, 2004 and it and the people here literally saved my life. It was a dark time, but somehow knowing I wasn't crazy, okay maybe I am crazy, but at least I knew I wasn't alone and that helped. So did the tons of information and the emotional support of these wonderful people. The best advice I could give you at this point would be to go to the bathroomn, get a beverage, get yourself all comfy and read, read, read. Knowledge is power. You are your own best advocate in your treatment and to do a good job, you need to have the right information. Welcome to our little corner of the web. It sucks that you had a reason to look for us, but if you have CH I'm damned glad you found us. |
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Title: Re: Who is who here to the newcommers Post by nani on Jun 17th, 2005, 9:31am Hi! I'm nani. Welcome! I've had CH since 1973. Finally diagnosed in 2000. I'm chronic and have recently found relief with kudzu. This place has been a life saver for me (sometimes literally). Stick around, read, ask questions...you'll find much info and support here. This is me and mooshie, one of my amazing supporters. She's a member here, too. :) http://img.photobucket.com/albums/v203/nani36/IM000065.jpg |
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Title: Re: Who is who here to the newcommers Post by Redd715 on Jun 17th, 2005, 9:44am http://pahlow.net/ch/ch_images/redd_bg.jpg Name is Pegg aka Redd... 40 years old, Mother to 2 teenagers who are my greatest supporters. Primary Chronic with periods of increased activity. Found CH.com just over a year ago when the years of mis-diagnosis came to an end. Saved my life as well, as the depression had set in full force and I was ready to take myself out. I had lost not only my job, but my boyfriend bailed on me as well when he learned there was no cure and this wasn't *fixable*. (actually I think he's still convinced this is all my imagination and I need a shrink rather than meds.) Only been correctly diagnosed since April of last year but have been suffering this beast for over 13 years by going back through my medical records, and longer if you go back through my dental records as well. |
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Title: Re: Who is who here to the newcommers Post by LeLimey on Jun 17th, 2005, 10:02am I'm Helen, I'm 42, I live in between Nottingham and Grantham in England I have three children, Brid 13, Barney 13 and Jasper 6. I've been diagnosed with CH since September 2004 and I've been in cycle since then. Getting to week 26 was my blackest point personally because it was half a year but I've given myself a kick up the bum since then and got on with things! I'm a huge fan of O2, its my favourite abortive and works 9 times out of ten for me - I can't recommend it enough. My youngest son, Jasper, was diagnosed with CH when he was three and has now had four cycles (he's 6 now) which is very hard to take. I've not been able to help blaming myself yet. The best thing that could have happend to me was finding this site. I didn't want to live, I don't mean I would have killed myself for one minute but I did not want to live with the pain, and bleakness I felt. Finding this site and the wonderful warm caring people therein has given me the strength to stick two fingers up at the beast and shout "BOLLOCKS" with all my might! [smiley=laugh.gif] My life has changed completely in the past two years. I've met and fallen in love with another sufferer, Paul and we are now intending on spending the rest of our lives together :) Whilst CH is bloody awful and has been one of the worst things ever to happen to me, it has also directly caused some of the most wonderful things ever for me too. I've made the best friends a person could have, I've acquired a world wide family and a soul mate, someone I love with all my heart and who understands everything about me.. Well except my use of the word "plonker" and my fondness for spotted dick! It's a Brit thing! He even likes marmite! I'm a lucky girl LOL I've had so much love and support from here that I can never ever pay it back but I will continue to pay it forward by helping and supporting every last one of you that needs it. http://i10.photobucket.com/albums/a139/lelimey/cid_24-01-06_0854.jpg |
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Title: Re: Who is who here to the newcommers Post by yikes-another-one on Jun 17th, 2005, 7:08pm http://im1.shutterfly.com/procserv/47b5d834b3127cce9218755208dc00000010108AbNmLJmzaN6 found this place in aug 2004, not a moment too soon. This place also saved my life.... I was getting too scared to drive anywhere, and too tired to fight the pains..... but they helped me find my boots and gave me the encouragement I needed to take back my life. Just read up and you will find all you really need to do is ask and someone will find you, they will get you what you need to survive. Me? Married to a sweetheart who gives me more than I deserve....but we made a deal and I try to give him more than he deserves too!!! I have been having the pains of CH for at least 8 years, and last September I started having about 4 - 8 headaches every single day. I am still blessed though, with the on and off schedule, i am still able to work at a daycare with 10 luvable one-year-olds. |
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Title: Re: Who is who here to the newcommers Post by Charlie on Jun 17th, 2005, 8:03pm http://www.netsync.net/users/charlies/gifs/cs puter.jpg I'm 58, hard to believe. I came here in 2000 just wondering if there were any CH sites. EGAD! I discovered that I'm not alone and that there are variations of this horror. I've been pain free since 1991 but can't resist coming here to post a technique I learned. I had no idea how many drugs and treatments existed. I'm single, talk about the old days with other gray hairs while reading the paper and drinking milkshakes at McDonalds. I can't believe it either. I live in western New York State 30 miles from Lake Erie and 75 miles south of Buffalo. It's quiet. Other than epilepsy, I'm in fairly good shape for an old Swede. I sell some antiques and collectibles on ebay and now and then at shows. It's fun. I don't know what I'd do without all you brain damaged people. Charlie (who likes his smilies) http://www.netsync.net/users/charlies/gifs/mirror.gif |
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Title: Re: Who is who here to the newcommers Post by Bethany1 on Jun 17th, 2005, 8:08pm http://pahlow.net/ch/ch_images/beth_bg.jpg Hi, I'm Bethany, 30 yrs old living in Boston, MA. I've been a member here since December of 2002. This place has done wonders for me since I found it. I have met some wonderful people, gotten great advice, and support. Welcome to the family. ;;D |
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Title: Re: Who is who here to the newcommers Post by E-Double on Jun 17th, 2005, 8:43pm http://im1.shutterfly.com/procserv/47b7d830b3127cce8570c0e1d7fd00000025103QasWrlwx0 Whattup! Eric, 33 yr old faith healer from NY......just kidding! [smiley=laugh.gif] I am actually a Board Certified Behavior Analyst and a Special Education Teacher. I develop & run home schools for toddlers with developmental disabilities in Early Intervention. I also lecture and train new teachers entering the field. I went 18 cycles episodic and un/misdiagnosed. 1yr ago spring cycle began and went heywire..found this place and wound up getting a proper diagnosis as well as learned how to live life again. My latest cycle never broke and I have become chronic....Doesn't make a difference to me to be honest, in fact less dread because I know what to expect everyday. I was a lot "worse off" when I used to pray for them to leave or questioned when it would end....IT IS WHAT IT IS...for now ;) ;) I have only missed coming to this sanctuary for 8 days and that was while I was on my honeymoon. This place is a godsend and the people here have saved my life and given me the power of knowledge regarding our dreadful condition... that in itself is the most powerful tool! If I can give you any advice, it is as follows: READ READ READ! Learn as much as you can and try your best to be positive!! Beer is Good! Hugs, E 2 |
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Title: Re: Who is who here to the newcommers Post by Jimmy_B on Jun 18th, 2005, 8:14am http://www.pahlow.net/ch/ch_images/jim_barb_bg.jpg This is me and my wife Barbara and below my daughter Jessica being picked up by her date for the Junior Prom. http://img217.echo.cx/img217/9860/jessprompic7so.jpg They are both the greatest Ch supporters in the world. I'm 39 years old. Will hit the big 4-0 this November. I've had Clusters since I was about 15 years old but they were not diagnosed for another 10 years. I am Episodic and always have my CH on the right side. I live in Bucks County, Pa. (Levittown) which is about 10 miles northeast of Philadelphia. I'm an avid Philadelphia Eagles, Phillies, and Flyers fan. I work two jobs in Physical Security. My main job is at a large Pharmaceutical Company and part-time gig is in a Hotel/bar. Both are in Princeton, N.J. Jimmy Edited to add... Here's a more up to date picture of Me, wife Barbara, and our dog Dustin...watching the Fireworks in Maple Shade, NJ July 2nd, 2005 http://img225.imageshack.us/img225/4056/fireworks2005pic2xl.jpg |
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Title: Re: Who is who here to the newcommers Post by vig on Jun 18th, 2005, 4:50pm I swear I look older in person... http://kdlltd.com/vig/plvs.jpg uh, by the way, anybody know what comes after 4? I'm stuck. ;;D |
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Title: Re: Who is who here to the newcommers Post by pattik on Jun 18th, 2005, 5:33pm http://i3.photobucket.com/albums/y71/northcolor/pk.jpg Hi, I'm Pat, or Patti (aka pattik), and welcome to clusterville. I have had CH for longer than I care to remember, and this site has been a Godsend--not only for all the information it holds, but also for all the humor and friendship that abounds. Hope you like it here as much as I do. ;;D |
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Title: Re: Who is who here to the newcommers Post by Redneck on Jun 18th, 2005, 6:15pm Welcome to the madness all :) I found this place a bit over a year ago. After 22 years alone it was nice to know that I was not really alone. Now at a bit over 23 years, 17 of the with completely out of control clusters, it's nice to have someone to talk to that understands. Besides that I have met some of the nicest people in the world. Welcome, hope you find what you need. Fear not, ask, there are no dumb questions! (They may have been answered before, but if you have slow dial up like me you cant quickly look, and some one with DSL will post you the link ;;D) http://img.photobucket.com/albums/v323/Jimbo803/Misc%20stuff/Photo00501.jpg And still a short ugly redneck after all this time! |
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Title: Re: Who is who here to the newcommers Post by cootie on Jun 19th, 2005, 1:13pm Hello out there new peoples ! I'm Pam......(cootie of course)......from Ohio......gee I been here since 2000 at least.....mite be longer but I can't get into the archive stuff. Slow dialup. Anyhow.....I am a supporter for Brad and sumtimes entertain the troops here with my ramblings if not annoy them.....depends on my mood. I keep myself sane by bein CRAZY.......well you know what I mean. Brad's been goin thru this ch crap for close to 20 yrs.....misdiagnosed as usual and went the sinus infection/anxiety med route that was all WRONG deal. We have a cool internalist doc now that will work with us on whatever he needs or wants to try.....were pretty lucky there. Brad's outa cycle and skipped one this past fall but then he has went 4 years before. His ch started when someone dropped a hammer on his head from the roof of a garage. He was helpin em put up a big old satillite dish and climbing the ladder when he got the head blast. But we've heard rumors of his great grama that had some sort of seveere headaches many many years ago and would hold a wet washcloth on her temple.....we don't know if she had ch or migraines.....no one seems to know much more about it. (there from the old country and like poka music...hee-hee) Brad's one sister has bad migraines and guess this head deal stuff can run in families with one or the other or both. We have one daughter that's married with 3 kids. I have chronic back problems from horse wrecks when raceing years ago......and an injury to my neck to add to it. Other then that I am just BLONDE. Nice to meet you......welcome wagons ho Pam ;;D |
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Title: Re: Who is who here to the newcommers Post by Kris_in_SJ on Jun 19th, 2005, 9:07pm Hi, Kris here. No pics to show since I haven't taken the time to set up a URL to post them. It's the only thing I dislike about this board - those damned URL requirements! Trust me - 5' 2", eyes of blue, oh what those blue eyes can do! Unfortunately, one of them droops a little ever since I got clusters. Didn't meet the beast until the age of 40 - never a HA before then. Have had 3 cycles now, about 3 years apart - that would make me .... well, never mind. Cycles last about 10 weeks. Get great relief from Trex injects, Verapamil and a Prednisone taper. Last cycle ended last July, which means, if luck is with me, I have 2 PF years to look forward to. One thing I've learned though, is that the beast likes to fool you - could start a new cycle tomorrow! I'm a writer/graphic designer and married to an architectural photographer. My only child, Emily, just moved away to start her own life. I have a wonderful family both nearby and on this board. Hope all the newbies find it as wonderful as I do. Hugs, Kris |
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Title: Re: Who is who here to the newcommers Post by Gena on Jun 20th, 2005, 1:10pm http://i2.photobucket.com/albums/y42/gml4u/Me.jpg Gena - 34 episodic Started having Ch when I was 21 misdiagnosed till I was 32 |
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Title: Re: Who is who here to the newcommers Post by Cathi04 on Jun 20th, 2005, 1:52pm >>>>>>>>>>>>>>>>>skidding in, kicking the dust..... OK, then, Svenn made me do this........... I'm Cathi, supporter of all who want me, lifelong friends of some pretty wonderful people. Although I am not a direct supporter, nor am I a sufferer, I arrived here about 2....umm, maybe 3 yrs ago, and was instantly hooked! Happily married for 32 yrs, sometimes my husband thinks I am certifiable-but I am housetrained, so he keeps me ;) We are allowed to move freely about our home, despite the fact that 4 cats run the joint. My curiosity about this horrendous affliction brought me here, my tremendous respect and a desire to help- even in some small way, keeps me coming back daily! I have had the opportunity to meet most of my closest friends here at CH.com.and I am looking soo forward to meeting more of you in the not-too-distant future. I was fortunate enough to observe one of my friends, as he helped someone with the effective use of 02, and studied his method. Now I can help others..and it works!!!!!!!!! I still have a lot to learn, and a lot to give. I try never to let a day go by without saying to all here.... PF wishes, Cathi :-* |
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Title: Re: Who is who here to the newcommers Post by thomas on Jun 20th, 2005, 4:07pm http://pahlow.net/ch/ch_images/tom1_bg.jpg That's me. I am 32 yo. I have had clusters for 14 years. Did my first three years with no meds. Finally got suicidal and went to a doc, got diagnosed right away. Discovered imitrex, thought it was a Godsend. Untill then I had to ride out every ch. Finally had something that would kill them, though I was golden! :) Cycles started getting longer and hits were coming more often and harder. I was becoming an imitrex "junkie" felt like a pincusion. My life was a living hell every cycle. Got some prevents, verapamill and prednisone, didn't work very well at all. Got so depressed was going to kill myself, and then I typed, just for the hell of it "Clusterheadaches.com" into my browser and started to read some of the stories and posts here and started crying. Found out about O2. Tried O2 but didn't have the correct flow rate, so it only worked about 1/3 of the time. Tried sansert, worked great on the ch, but almost destroyed the rest of my body. Then I discovered amerge, got good results as an abortive, worked fairly fast and I would get 4-6 hours of pf time between hits. Then my ins. co. wouldn't pay for it anymore unless I tried axert and zomig. Axert worked on 2 CH's and then was inefective. Have been using zomig and O2 at 15lpm for the last 3 years in conjunction with my new preventive measures: Quote:
Now my cylces are pretty controllable, at least they have been for the last 3 years. Now I am engaged to http://i2.photobucket.com/albums/y42/gml4u/Me.jpg Isn't she the cutest? ;;D And haven't been happier in my whole life. Love the folks I've met here, many of them have given me that strength to carry on when I would have rather given up. Thanks to all at CH.com and especially DJ. Don't want to think about where I'd be without you guys/gals. |
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Title: Re: Who is who here to the newcommers Post by Linda_Howell on Jun 20th, 2005, 5:09pm Linda Howell Chronic clusterhead since 1987 I was lucky, in that after I dianosed myself I got seen and treated by one the best in this field. Dr. Kudrow. I typed CLUSTER HEADACHE into a search engine in 1998 and found this family and knew I'd never be alone in this again. These people that I have met and known for 6 yrs. now are the most well-informed, frustrating and loving people in the world and we all owe this to DJ who started this web site. I live in Spokane, Wa. for the moment, but am moving back to my real home in Northern California in November. I have 7 kids (no. that is not a typo) who all live in So. California and I just got married again last year. I'm also computer illiterate so I cannot post a picture. lol Linda |
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Title: Re: Who is who here to the newcommers Post by alienspacebabe on Jun 20th, 2005, 7:29pm http://tinypic.com/66it5d This is me.... I'm have had CH for what seems like forever. I found this site after my father saw something about cluster headaches on GMA. Since then I've found that this is my second home and second family. My CH used to be "chronic" (2 1/2 year cycles) - I've been PF since January 20, 2004. 39, divorced, 2 adult children. Live in a suburb of Milwaukee, Wisconsin. WELCOME!!! Lizzie aka alienspacebabe |
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Title: Re: Who is who here to the newcommers Post by marty on Jun 22nd, 2005, 8:24pm http://palominoleather.com/Me.jpeg.jpg To damn old. Born and raised in Sweden. Moved to San Diego in 1986. Had CH for approximately 15 years, episodic - moved to Texas and that did not help (still episodic). Divorced with 18 year-old son (living with his mom) who just graduated high school. Marty |
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Title: Re: Who is who here to the newcommers Post by aprilbee on Jun 23rd, 2005, 4:36pm Sorry, no pics I'm April Bee a/k/a aprilbee...not much of a stretch huh? I'm 31 episodic, started when I was 8-9 diagnosed when I was 12 I'm married to Brett, the bestest husband in the whole world, he's that bad boy no girl could tame, then I got a hold of him.. he he he...he's a hockey player and, oh yeah totally hot!!...we have one girl, Dallis she's 12 she looks just like her dad... my life changed when I found this place, I feel sane and blesed.... :-* |
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Title: Re: Who is who here to the newcommers Post by Jonny on Jun 23rd, 2005, 4:41pm Well, seeing that Svenn has beatin me over the head to do this...I will ;;D Jonny 30 years chronic (Not sure im still chronic)... Have posted here everyday since 10/5/99... The most important thing you must remember is that I am King of this joint, any disputes will be brought before me and I will make my judgement ;;D You hear me?....I hear me!! http://www.clusterheadaches.com/public_html/yabbimages/smileys/headbanger.gif http://pahlow.net/ch/ch_images/jonny4.JPG Now get back to rowing....this ship of pain aint doing jack unless we row!! ;) |
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Title: Re: Who is who here to the newcommers Post by Kirk on Jun 24th, 2005, 1:26am Hi: I've been having these gruesome things since May 69. Which explains why I'm nearly half as crazy as Chuck. This picture is of Carrie and I in front of one of her murals. She's been dating me for over 40 years. Which qualifies her for saint hood. http://img.photobucket.com/albums/v285/Kirk511/My.jpg All I do, is a little fishing once in awhile. |
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Title: Re: Who is who here to the newcommers Post by TomM on Jun 24th, 2005, 12:13pm I'm TomM. Been here since Feb 1998. I'm 42 and been married 19 years. I was diagnosed in 1994 and am eposodic. I Live in Bowie, MD. TomM 8) http://mysite.verizon.net/tgmeyer/sitebuildercontent/sitebuilderpictures/tomrenee.jpg |
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Title: Re: Who is who here to the newcommers Post by ExplodingEyeBall on Jun 24th, 2005, 12:26pm I guess I'll post this in the right thread now. For the newcomers.... My name is Pat. The cute one in the picture is my daughter Mackenzie (who can do no wrong). The guitars' name is Becky. I named it after my wife since I spent so much time restoring it. I'm 42. I have 3 step kids and my daughter who is in the picture with me. I live in N/W Indiana beneath the pollution and stench of Chicago and Gary. Please, get me out of here. I work as a Microcomputer Specialist (Fancy word for computer technician) for the Lake County Library. My hair used to be longer than jonny's till I made the mistake of telling my wife she could cut it when I turned 30. (A long time ago) I have been an episodic Cluster sufferer for so long that I couldn't tell you when they started. The "eyeball" headaches have always been a part of my life. I just recently (in the last year) got an actual diagnosis from a neuro. This web site has helped me more than anyone here will ever know. I am a computer freak and a guitar collector/nut. I love to spoil my wife and my daughter as much as possible. There is no food in exsitance that is to spicey for me. Not that I've found yet. Contrary to what people here think, I am not halfway insane. ;;D http://im1.shutterfly.com/procserv/47b5df27b3127cce9da340925cde00000016108EZs2rJy0ba |
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Title: Re: Who is who here to the newcommers Post by Barry_T_Coles on Jun 28th, 2005, 12:41am Hi I'm Barry from the Pilbara region in the north west of Australia. Cant post a picture but then again these people are in enough pain without having to look at me. Married for 34 years to a wonderfull woman who feels the pain with me. 2 children, daughter 32 and son 30. Only been an episodic sufferer for the last 5 years and found this site through my doctor who came across it while looking for migrane related sites as her children suffer from them. These people may sound like looney's some times but they sure give you some comfort in the knowledge they have and the ready and valuable advice. My wacks last for about three months but this time I seem to have lasting shadows which is a whole lot better than full blown. If you are new it's sad you are here but you are definately in good company. Reading the posts that are put here leads me to think that the person who devised the LOONEY TUNES was a CH sufferer, you need to be that crazy to be able to do something like that. PFD&N to all Kind regards Barry |
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Title: Re: Who is who here to the newcommers Post by Kim Y. on Jun 28th, 2005, 12:08pm http://pg.photos.yahoo.com/ph/kimchipower66502/album?.dir=/mail I suck at posting pictures so the very last picture in this album is me and my husband Danny.... Of 7 wonderful years... I am 28 Had CH for less then a year. First attack April 04 ended Aug 04 2nd attack End of Nov 04-present CH episodic possibly going Chronic Going on 8 mo. With minimal pain to kip 6/7 no really bad attacks in awhile (knock on wood) Sensitivities: Cheep hairspray, strong airfresheners, Cologne, cigarett smoke, some alcohol thus far... Send me into an attack Preventives: Take multivit. as well as fish oil and CQ10 Abortives: O2 and Imitrex injection I am currently in KS but am from MT will probably end up in TX because my husbands parents live there and they are older then my parents. Attending RN school starting 18 Jul 05 been an LPN for a year. KimY |
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Title: Re: Who is who here to the newcommers Post by E-Double on Jun 28th, 2005, 1:45pm on 06/28/05 at 12:08:07, Kim Y. wrote:
There ya go ;) |
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Title: Re: Who is who here to the newcommers Post by marlinsfan on Jun 28th, 2005, 4:41pm I'm a newbie! I joined this group on May 30th, and you all saved my sanity. My first CH I remember I was a sophomore in high school (1982 I think, so about 23 yrs ago), and it came in the middle of my soccer practice. One hit, I don't know how long it lasted, but I ended up in the ER. The winter before that hit, I had two skiing accidents (I was bent over buckling my boot on the side of a trail, when someone out of control put his knee to my temple, same side I get HAs now, then a couple of months later I hit a tree), and the cycles started after that. Probably just coincidence. I'm pretty sure I've cycled every year but I'm not 100% certain. Always over the christmas holidays, until...... 3 years ago my cycle ended and I didn't cycle again until this April. I skipped 2 years, and the current cycle started about 3 months after my usual ending month. My friends and family thought of me as a grinch cause I hate december (you all understand why, but they don't!). I was mis-diagnosed with migraines in 1996, right before I got married. My wife to be woke up while I was under attack and found me in the living room with my gun in my hand. She took me to the neuro. Brave soul, decided to marry me anyway! The neuro at the time attributed my "migraines" to stress caused by the upcoming marriage. I no longer own a gun..... I am a finance director in a major credit card company. The company has been going through some restructurings, and I've been having back problems, which resulted in surgery right before my current cycle. My wife thought that my "migraines" were caused by the stress at work and the back. I almost started to believe it when I stumbled on this site. When my cycle started, I made a neuro appt to get my trex prescription renewed, so before my appt I went on Web-MD to see if there was anything new on migraines (it had been 3 years since my last one!). The term cluster headache came up somewhere in Web-MD and I yahoo'd the term and here I am. My new neuro confirmed the CH, gave me a prednisone taper, wrote me up for O2 and refilled my trex. I also take 9 mg of melatonin every night now. I was born in Venezuela 37 years ago, I've lived in Italy (my first 5 yrs, dad is Italian), the US (Boston, Denver, Ft Lauderdale) for 19 years, the other 13 I lived in Venezuela. I proudly became a US citizen last year, and I now live in Hollywood, Florida. My wife of 9 years was born in Portugal and is a chef who owns her own catering company. We don't have kids, but are talking about having them..... I asked E-Double to upload a pic for me cause I don't know how! The picture is me & my wife in Beaver Creek, Colorado this past February. I'm also a fan of baseball. Currently a Marlins fan, have had season tickets since 1998, got to go to 2 world series games in 2003. So that's me. Thank you thank you thank you for all your help, support, advice, encouragement. I've been on the site every day since May 30th. I've learned a ton, and I'm helping when I can. Jose |
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Title: Re: Who is who here to the newcommers Post by E-Double on Jun 28th, 2005, 5:20pm on 06/28/05 at 16:41:20, marlinsfan wrote:
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Title: Re: Who is who here to the newcommers Post by Ree on Jul 5th, 2005, 1:48pm Hi this is my familyhttp://im1.shutterfly.com/procserv/47b4cf38b3127cce9e0594b6e84900000016108AaNXLdu4bs4 and thats me on the far right.... Dave is in the back.... He is the cluster sufferer.... Im just the sucker that loves him... My kids are the best.... keep me busy.... Im from Massachusetts (the land of jonny donny and seanny c) let's just say Boston rocks.... wishing you pain free cozy nights and days!!!!!! Ree |
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Title: Re: Who is who here to the newcommers Post by blood_Redd_son on Jul 11th, 2005, 11:08am Hi! My names Dylan. I'm 15 years old, use the Tarot, and have been a supporter for my mom since the beast got her again. My mom's a chronic, my dad's a episodic, and i don't know where i'll be if the demon hits me. this gets me and my mom worried sometimes, but it just might not happen. I'm also a newbie here. Just don't fight jonny for cheese.... ;;D ;;D ;;D |
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Title: Re: Who is who here to the newcommers Post by Cooked Brain on Jul 15th, 2005, 9:00pm Cooked Brain, 27 teacher from Rotterdam Netherlands left-side sufferer for over 10 years, treated the last 2. Found this place when I was on the edge, got help from these fantastic people and have been living better ever since... To all the newbies: don't give up, stay strong, it WILL get better! |
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Title: Re: Who is who here to the newcommers Post by Frank_W on Jul 30th, 2005, 11:10am Hi! I'm Frank, and this is my wife, Mari (rhymes with "starry" ) and our 7-year old daughter, Julia. Mari and I have been happily married for nearly 14 years, and it just gets better and better. :) http://www.imagecrown.com/images/Jeepgun/carnival.jpg On a grimmer note: I first began having CH about eight years ago, and thought I was dying... I didn't get properly diagnosed until two years ago. This site literally saved my life. By the time I got diagnosed, I had already planned out to the last detail, how I was going to commit suicide. :( |
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Title: Re: Who is who here to the newcommers Post by Sandy_C on Jul 30th, 2005, 12:43pm I have given up on trying to post a picture here. Have tried for three days and get nothing but a blank space. Hey, maybe that IS my picture ;;D. Anyway, I'm Sandy, married to hubby Tarey for almost 36 years. We have two gorgeous grown daughters, one dog, one cat, three granddogs, two grandcats (can you tell I'm hoping to add something a little different to this "grand" list?). I design and sell parking lot lighiting for shopping centers, car dealerships, etc. (You never thought about that somebody actually did that did you? If you shop in a dark parking lot, it's not my stuff. Hey, somebody's gotta do it, why not me?) My very first CH cycle started in summer of 1999 when I was heavily involved in planning daughter's wedding. Put the whole thing down to "stress" because the HA went away right after the wedding. Lo and behold, they came back about two years later, and have been coming and going ever since. Now that I know what I've got, I'm learning to live with it because of the people and information that I've found on this board. Thanks you guys! Love and PFDAN to all of you. |
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Title: Re: Who is who here to the newcommers Post by jcmquix on Jul 31st, 2005, 7:51pm http://storage.msn.com/x1pnp_rgmi5o51gmCLFJS6UmsNJsWnXBf7HBjdU5yam66XnPPK-TAQBhvPcPsMDCyt_yrYGblEBRvafokWv6zhxir9etOqEuZJAmopJpUPugCZi5LeiY1aCbJ3U10MA6FSA6Dl8s1P2BNY HI all this is my Family: jcmquix (Charlie - left) whiteboy69 (Matt - Our Son - middle) sassy_lady (Jolene - my Wife - right) Eveyone has been posting here, jus thought it would be nice to put some faces to the names. PFDAN's to ALL !!! |
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Title: Re: Who is who here to the newcommers Post by Melissa on Aug 6th, 2005, 8:03pm Hi, I'm Melissa, but pretty much everyone on here calls me Mel. I've been a ch sufferer for the past 15 years (since 1990) and a member of ch.com and OUCH since Sept. 2000. I am episodic with my cycles coming every other year lasting for about 6-7 weeks. I'm blessed to have a wonderful husband (Jesse), a daughter (Lily) and a son (Elijah). http://img.photobucket.com/albums/v708/mfiltz/mug2.jpg To anyone new here: Welcome to the family, I am very sorry you have clusters, but you have found the right place. Oh, and please remember to read the links! Take care, :)mel |
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Title: Re: Who is who here to the newcommers Post by Jasmyn on Aug 8th, 2005, 3:29pm Hi, I'm Jas. Living in Mozambique at the Southern end of Africa. http://photobucket.com/albums/a109/jazzdebeer/th_Copy2ofmominevening003.jpg Pic with one of my oil paintings behind me. I am 39 going on 40 and been a clusterhead for 14 years. Have three wonderfull kids, Roxanne, Dominique and Arielle. Roxanne turned 18 today! This site and these people were a lifesaver and still is. (Thanks to Don, eventually this pc illiterate person can post a pic after all these years!) ;) Modified sorry lost my pic |
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Title: Re: Who is who here to the newcommers Post by TxBasslady on Aug 9th, 2005, 12:36am Hi, My name is Jean...I am married, with 3 great sons, and 8 grandchildren. I am currently retired. My career was spent in Law Enforcement/Sheriff's Dept. I am a native Texan, born and raised in Houston. I am an avid bass fisherman, and spend most of my time at our lakehouse in Louisiana, on Toledo Bend Lake. I found this site in January, 2001. I am an episodic sufferer, self diagnosed in January 2001 (thanks to DJ and this site), and professionally diagnosed in September, 2003. I currently take Kudzu for my CH, which has worked really well for me. Welcome...to our world of CH. The love and friendship on this site will help you cope with your pain. Until there's a cure.....this is the best thing going. http://im1.shutterfly.com/procserv/47b5da23b3127cce90af123cd23700000066108GZtmzhu1Y |
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Title: Re: Who is who here to the newcommers Post by sdlauri on Aug 18th, 2005, 10:19pm Hi Everyone, I am so happy to find a place where someone can understand the knife in my brain. I just got diagnosed on Tuesday - after a couple of CTs, a couple of PCP appts and a trip to Urgent care. I am on Verapamil, Imitrex and if I get one at work I suck on some O2. I am glad I found you all. Lauri |
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Title: Re: Who is who here to the newcommers Post by vig on Aug 22nd, 2005, 2:59pm http://www.kdlltd.com/vig/sweetnessnme.jpg the pic is a good 10 years old. that's former Chicago Bear Walter Payton.... ON THE LEFT!!! |
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Title: Re: Who is who here to the newcommers Post by E-Double on Aug 22nd, 2005, 6:16pm on 08/22/05 at 14:59:36, vig wrote:
Sweetness ;) Nice! |
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Title: Re: Who is who here to the newcommers Post by kimmiedawn81 on Aug 29th, 2005, 2:53pm Hi everyone! I'm Kim, I live in Edwardsville, IL, which is about 20 minutes away from St. Louis.....the home of the best baseball team in MLB. I'm 24, I have a degree in Social Work and I'm working on finishing up my Massage Therapy degree. I'm episodic, I have been having clusters for about 7-8 years and I got diagnosed about 5 years ago. I'm pretty lucky compared to others that suffered for much longer without a diagnosis. I have a wonderful boyfriend and wonderful parents and I will be an Aunt for the first time in January. I'm having a little neice....YEA! That's my life! |
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Title: Re: Who is who here to the newcommers Post by seasonalboomer on Aug 30th, 2005, 8:07am http://www.pahlow.net/ch/ch_images/scott_boomer_bg.jpg I'm Scott or "seasonalboomer". Been a clusterhead since my mid-to-late twenties. Episodic with a couple cycles a year, usually lasting from 3-6 weeks in total. Clusterheadaches.com has changed my life inasmuch as it has helped and encouraged me to fight my Cluster Headaches instead of just taking them and waiting them out. Because of CH.com and these boards I now have my Kudzu, O2 and Imitrex. The triumvarate of weapons that feels like a big soft comforter to me now. (Thanks BobP for putting my pic up) |
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Title: Re: Who is who here to the newcommers Post by superdave10 on Sep 10th, 2005, 1:22pm The name here is David. I'm joining this list after starting my third encounter (cycle). I suppose my first encounter with the "beast" about 2 years ago. I began having ch at night and thinking it was just an awful sinus headache would take sinus pills and in 10-15 minutes get relief and go back to sleep. After a week of this I start to get concerned so while in the ER (I'm a paramedic) I describe the the doc my symptoms and ask him if should get a CT of something. He immediately tells me to go look up cluster headaches. That led me to this site and I couldn't believe the description of my symptoms word for word although maybe not as frequent and severe. I suppose I am fortunate that I rarely have more than one CH per day and they are usually at night and last only 20-30 minutes. Later that week while working shift I was awakened with a CH. I sucked down an entire bottle of O2 and after more than an hour had my partner drive me to the ER. I got the requisite CT and LOTS of narcotics and finally broke the CH. My family doc prescribed prednisone and that took care of my cycle. My second cycle was rather uneventful. After suffering two nights my family doc called in the prednisone and darvocet and that immediately halted the cycle. This time is different. I completed the round of prednisone (the cycle stopped with the first dose) but as soon as I stopped the steroids the cycle started again. Now I am scared as I think this is only getting worse.....and that's why I am here. I'm not sure if this was the appropriate forum for this entire story but not that it's all typed out I guess I push the post button. DH |
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Title: Re: Who is who here to the newcommers Post by Jonny on Sep 10th, 2005, 1:58pm This whole site is the right forum, Dave! Welcome aboard, but sorry you have to be here, man. Read up, theres lots of great info. ...............................................jonny |
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Title: Re: Who is who here to the newcommers Post by phantom12 on Sep 11th, 2005, 11:53am Hi, my name is Tom. I had no idea what a ch was until this year. I have been getting headaches off and on for years! I just got over a condition called vestibular neuronitis, in which the vestibular nerve in the middle ear is affected, causing vertigo and headaches. I went three years without any type of headache. Anyway, I was out of work for three weeks and felt better to go back! Then I started getting real nasty headaches. Went back to my neurologist and pointed on the headache board that he had at a diagram of the ch's. I just realized all these years I was misdiagnosed with sinus headaches. The doc put me on a regimen of depekote and indocin. This does not seem to be working as the headaches, after a little more than a week have been getting more intense. Sharp hot pain behind the eye and above the eyelid, the back of the head and the ear, plus intense pain on top of the head. |
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Title: Re: Who is who here to the newcommers Post by Ronny on Oct 1st, 2005, 12:56pm Hi, i'm Ronny aka Ronny I'm 43, CH for about 7.5 years http://users.skynet.be/fa455588/images/IMG_1535 (Medium).JPG |
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Title: Re: Who is who here to the newcommers Post by northerner on Oct 6th, 2005, 6:16pm Hi all. I'm back. So's the beast. My name's Chris. I don't have a picture. 46 years old, CH for as long as i can remember although not diagnosed till five years ago, when I discovered this board. Some of you were nice enough to help me then, and were a great comfort. I'm lucky, though, in that the last three years have been pretty much CH free, so I slowly pulled away. Then about a month ago, a cycle started anew. It has been building and building. Today there were two attacks, the latest just finishing a few minutes ago, a nine on the kip scale. I''ve had a couple 10s this round -- including one last Saturday night in the middle of my son-in-law's father's 65th birthday party (i had to go out into the parking lot, pacing and muttering, what fun a CH is at a party!) -- the pain dragging to the back of the head as if on a hot wire. All of it on my right side. If the past is any guide, i have another two to four weeks in this cycle, but it's also gone longer. My job is high pressure and of late, with a slight change in duties and hours, has been fatiguing, which may have triggered this round. But who the hell knows. I have a question. One of the things that keeps me sane is running. A week and a half ago i completed a marathon, my seventh, here in Toronto, my hometown. In the middle of it i had a CH but managed to keep going it was quite mild. But exercise is another BIG-Time trigger for my CH's. As soon as I'm finishing up a run, I can feel the beast beginning to roar. Once I finish my shower, it's in full gory flow. I'm wondering how other runners handle this. Thanks for listening. Sorry to go on so. This time, I'll stick around. |
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Title: Re: Who is who here to the newcommers Post by gore2424 on Oct 13th, 2005, 9:34am Hello all Terry here with my granddaughter Olivia I live in davenport iowa where the DavCon04 & 05 and soon to be 06 meet and greet I am going to be 51 by then chronic since Nov 1999 before spring and fall for 16 years http://photobucket.com/albums/b16/gore2424/th_PICT0378.jpg |
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Title: Re: Who is who here to the newcommers Post by Tamara_Lynn on Oct 13th, 2005, 12:02pm Well hi, my name is Tamara. I am 18 years old and have had CH since I was 16. I was not sure what they were, because they were normally able to ignore if I started to work on something or read a book. But lately, they have gotten worse. They are almost always there and school does not help. which I am home from today because I have had attacks everyday for the last 2 weeks. Although not too painful, it lets me know that it is there. And least of all, I didin't know that I ad them till a few days ago when I brought it up with my mother and she took me to the hospital. |
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Title: Re: Who is who here to the newcommers Post by nani on Oct 13th, 2005, 1:41pm Welcome, Tamara, and sorry you had to find us. I had my first episode at 16 also. Now that you've found us, read everything you can. Information is your best weapon and you are your best advocate. Feel free to ask questions, there are many her with a great deal of info. pain free wishes, nani |
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Title: Re: Who is who here to the newcommers Post by ktrygrl_sc on Oct 15th, 2005, 10:58pm how do i insert pics? [smiley=huh.gif] |
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Title: Re: Who is who here to the newcommers Post by marlinsfan on Oct 16th, 2005, 12:47pm you need to post them on a website, then link that site to your post. |
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Title: Re: Who is who here to the newcommers Post by Bondservant on Oct 16th, 2005, 2:19pm Greetings: I am Joel, also known as Bondservant. Bondservant refers to my relationship to Jesus. Been getting CHs since 1989... Now 49. Properly diagnosed in 2002. We are Americans living in Stuttgart, Germany. Married to Mary for 24 years. Cannot post a photo yet. . |
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Title: Re: Who is who here to the newcommers Post by LeLimey on Oct 16th, 2005, 2:52pm Hello Joel, its nice to meet you! Are you chronic/episodic/ in cycle? How are you managing med wise? If there is anything we can help with just shout okay?! Take care Helen |
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Title: Re: Who is who here to the newcommers Post by Bondservant on Oct 16th, 2005, 4:11pm Hi. I'm episodic, but finished cycle two weeks ago. Good on meds. Thanks for asking. |
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Title: Re: Who is who here to the newcommers Post by LeLimey on Oct 16th, 2005, 4:19pm Well here is hoping your PF time lasts forever! Stick around, you may be able to share the "benefits" of your experience - it would be great! |
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Title: Re: Who is who here to the newcommers Post by zanychef on Oct 17th, 2005, 6:21pm hi there sorry no pic but then hell i dont want to scare the more sensitive people away ;;D my real name is Ian so use that if zany aint good enough.. ch'er since 1985 when i was just twenty(what a birthday present i still got it!)episodic for first ten years now i dont know if i'm chronic,episodic or just plain screwed up! as i seldom have a month without a visit by you know what! but have had two periods of 3 months pain free(your guess is as good as mine on this one folks!)been in and out of hospitals and mental institutes trying to get rid of these things for the last 10 years no luck but i'll keep trying ;;D sorry to have to meet you here but the people are great and i couldnt do without this vent and constant amazement that there are people as daft as me on the world ;) feel free to ping me on messenger if you want a chat ;;D zanychef aka ian |
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Title: Re: Who is who here to the newcommers Post by juvy on Oct 29th, 2005, 7:00am Well I'm April aka Juvy. 27 yrs old, married and expecting our first child in Nov. 2005. Found this place in 2002 but rejoined in 2003. I was first diagnosed with CH but they changed it to CPH. I have a rare version that effects both sides of the head and Indometh no longer works for me. My favorite abortive is Ice, I pack my head in it until it goes numb. Not around as often as I'd like to be but if you have any questions feel free to drop me an email or message. |
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Title: Re: Who is who here to the newcommers Post by kyt on Nov 2nd, 2005, 8:41pm Hi I am Kathryn, Kyt to most. I by chance found this site out of desparation and have been here since October of 2005. These are really wonderful people who will embrace you and help you in any way they can. I have suffered with CH since I was 22. I have had the demon for 14 years now. Fortunately I had a great Neurologist who cared and listened and was able to help identify what was going on with me. I have been on various medications, but now use Lithium and oxygen through a rebreather. This is an affliction that once controlled my life. I have been married twice and neither of the mistakes understood. I do however remember being under attack once so bad all I could do was lay down on the kitchen floor and cry. With out saying a word the second mistke's son came in and put a pack of cold veggies on the left side of my face and gently brushed my hair. He kept telling me that he woish he could make the pain go away and make it all better. A gentle soul who could not comprehend such pain but understood how greatly it affected me. This gentle soul of a child kept watch over me for 2 hours until the pain was fully gone. I miss that kid and he is now a teen and I have not spoken to him since the mistake and I split. I have my episodes in the warmer months then into the fall when the first freeze hits. After the first freeze I am fine until summer rolls around again. I am lucky that my attacks happen late at night. I do want to send out a great big huge note of THANKS! to e-double... your advice on "Melatonin" has given me a little more sleep. I am so greatful to be here. It is very nice to know that there are others out there who understand and would never look at a sufferer and say, "Take an aspirin and get over it." Those words are so frequently usedby the ones who hardly even get a regular tension headache and even though they are so callous this is a pain I wouldn't even wish on them. It has taken me a long time to come to terms with this affliction. We all have our crosses to bear and this happens to be ours. Thank you all and welcome to those who are new...sorry you had a reason to come here but like the rest glad you found us. And Jonny.... I am actually the "Queen of EVERYTHING" I have a sweatshirt that sez so.. ha ha ha |
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Title: Re: Who is who here to the newcommers Post by RobHealy on Nov 8th, 2005, 12:18am Hello All, My name is Rob and I live in New Jersey. http://myspace-279.vo.llnwd.net/00223/97/25/223785279_l.jpg I am presently 28 and dealt with my first CH at 14. Had a reprieve from that initial attack for about two years then had my "teenage" bouts for about three weeks at a time about two to three weeks after starting school each year. I enjoyed a one year rest from CH the year after I graduated highschool and have since been mid to late fall episodic ever since EXCEPT in 2002 when I returned to the gym and reaped another PF year. My workout frequency is the same as it ever was, the bouts returned a year later. Did Sansert for an episode with great success but it made me feel incredibly spaced out. Also didn't like the possible side effects of the drug. ( I hate taking OTC cough medicine, let alone perscription stuff ) I used to do a hot shower treatment for nocturnal attacks then it's efficacy began to wane. I've never been on oxygen, but from reading the theories on how CH works, I turned to ice cold showers to act a s a vasoconstrictor and to induce hyperventilation (nature's way of getting more O2 in ya?!) I still use this and receive moderately good results from it. I try to abort diurnal attacks with vigorous pushups, concentration curls, dips and pull ups. Ferocious bodyweight exercise I suppose. .. This method that once worked like a charm is now losing it's abilty to snuff out an attack as thoroughly as it once did. I feel really bad as I've kind of kept in the shadows since I registered on this site many years ago, but I've garnered such great info and a priceless sense of solidarity with fellow CH people, even though I don't speak up much. As for non CH related stuff: I love cooking, music, motorcycles, horror stuff, sci-fi, craft beer and brewing and being in the company of good hearted people whether they're interesting or not. I hope you all have as many pain free days and nights as possible! My best, Rob |
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Title: Re: Who is who here to the newcommers Post by Jasmyn on Nov 8th, 2005, 3:07pm Hi there and welcome Kyt and Rob! Always bad to hear there are more CH'ers out there but sooo glad you guys are here now. Kyt sorry to hear your boss is not an understanding person but there is a letter here for employers. This is the best place to be as you will get great support and info here. Hang in there, read and read more and wishing you painfree times! Jas ;) |
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Title: Re: Who is who here to the newcommers Post by Rebel_Python on Nov 9th, 2005, 8:29am I'm another newbie, Jason Adams aka Rebel Python. Thank God, (or whoever else is in charge of this mess down here) I found this site. I'm 34 and have been chronic since I was 15. I'm really looking forward to getting to know everyone as this Demon in my head seems to dictate that I don't have many friends anymore cause they think I blew a fuse. Atleast after reading this site,I'm not the only walking dead out there. |
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Title: Re: Who is who here to the newcommers Post by Dan_The_Man_Howell on Nov 16th, 2005, 5:08pm Hi there. my name is Daniel Howell. I finally got a computer. Im out of the stone age! I do not suffer from the terrible beasts but unfurtunately my mom, Linda howell does. Furtunately, she has you wonderfull people :) who support and understand her pain as only you can. Thank you . Also thank you for sending well wishes after my accident. Finally , thank s to my moms freind who sent me the scrumptios tea and crumpets from across the pond. Like my mother, im computer illiterate and cannot post a pic. I have pics in my computer so maybe someone can explain how i get them fom my pic file or e mail to the message board. Dan howell mydboy00@yahoo.com |
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Title: Re: Who is who here to the newcommers Post by Margi on Nov 16th, 2005, 5:28pm Wow, Dan - it's so nice to see you posting! Your mom showed me a picture of you when she was up in Kelowna, BC, Canada a couple of summers ago. :) I feel sorry for you if you've inherited your mother's computer gene, kid. ;) (just kidding, your mom knows I love her!) To post pictures here, you'll have to upload them to a website that hosts pictures - www.picturetrail.com for example. Then, once they're there, you right click the image to get the address (URL). Then come here and click the Image icon above - the one that looks like a picture and paste that URL in between the image tags. Or...you could just email the image to someone and they could post it for you. Jonny's good at doing that. ;) |
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Title: Re: Who is who here to the newcommers Post by Linda_Howell on Nov 17th, 2005, 1:31pm To Daniel: awwwwwwwwww. How great that you came here to see what(and who) I've been talking about all these yrs. To Margi: You referred him to Jonny? :o :o Next time I see him he might have tats and hair down to his waist. The nice lady that sent the tea and crumpets to you is Helen (LeLimey) Linda |
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Title: Re: Who is who here to the newcommers Post by Margi on Nov 17th, 2005, 3:00pm Luinda, LOL - but you know what? It's a good look for Jonny...it might be for Daniel too, ya never know! There are lots of women out there who would kill to have Jonny's hair, you and I both know that. ;) |
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Title: Re: Who is who here to the newcommers Post by Jonny on Nov 17th, 2005, 3:23pm on 11/17/05 at 15:00:00, Margi wrote:
Could be I will be bald jonny soon, Cathy in England starts Chemo soon and if she loses her hair I may shave mine and send it to her.....thats if she can find someone to make a wig. Now thats a new twist on helping people with their heads ;;D |
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Title: Re: Who is who here to the newcommers Post by Linda_Howell on Nov 17th, 2005, 6:12pm Jonny, that would be awesome for you to do that for Cathy. WHAT A GREAT IDEA!!!!!!!!!!!!!!!! You wouldn't have to be as bald as Jimi Hendrix. You've got enough for a wig AND and nice haircut. :) And yes, Margi is correct.....lots of women would die to have your hair. Linda |
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Title: /S Post by jangus on Nov 17th, 2005, 6:57pm Hi all... I'm Johnny A from the Humboldt Hills of Northern California. I'm 49 years old and have been a victim of CH since I was 23 (26 years). I've tried many, many methods including Homeopothy, Quantum Energetics, Cranial Sacrum therapy, Chiropractics, Accupuncture, Reike, Shiatsu, various folk remedies and even flew to see a witch doktor living in a cave on Parangtritis Beach on Java, Indonesia. I started my current cycle on November 6, 2005 and I've since had 3 sessions of Quantum Energetics and 1 session of Accupuncture/Shiatsu with Chief Surgeon, Dr. William Zhao in Eureka, CA. I also have been using 10 litres per minute of 100% Oxygen for 15-20 minutes at the onset and drinking at least 200 ounces of water per day. Last night was the first in this cycle that I did not have a CH. Yeah! Tomorrow, I will receive another session of Quantum Energetics by someone that has been practicing for 15 years. She knows her stuff! This form of therapy has helped me acheive my longest interval between cycles... 3 years and 1 month! When none of the above works, I use the very expensive Maxalt which seems to abort the CH about 85% of the time. But at $50 per headache, I try not to eat them all up in one week. Cafergot works as an alternative, but not nearly as effective...maybe 45% of the time... I don't know... especially as I get deeper into the cycle. If Cafergot doesn't work, then I move to Dilaudid which enhances the "dizziness" and "nausea" to horrible levels. Hangover to boot! Later on in the cycle... when I'm up to about 16-20mg of Dilaudid, and still not getting results... I'm off to the emergency room for muscle shot of Demerol... now we're talkin' hangover! Blahhh! Give me LSD or give me Psilosybin or give me death! Much sincere sympathy to you all. I too am extremely grateful for this site and all of your warm, wonderful, supportive commentary. Peace be with you. http://www.picturetrail.com/gallery/view?p=999&gid=8725023&uid=4173414&members=1 |
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Title: Re: Who is who here to the newcommers Post by Jonny on Nov 17th, 2005, 7:01pm on 11/17/05 at 18:12:11, Linda_Howell wrote:
Have you seen her?....She has three times my hair in curls and its bearly past her shoulders......LOL If I do it im going all the way, Im hair for sufferers and supporters equally ;;D Oh God!!....LOL |
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Title: Re: Who is who here to the newcommers Post by Linda_Howell on Nov 17th, 2005, 7:34pm Welcome Jangus. There is a lot of info and help here. Also go to: Quote:
We are a chapter of OUCH and maybe you might feel more comfortable talking to us over there as we can possibly help you with problems known only to GOD and Californians. lol Just kidding. Linda p.s. Quote:
I do not believe you said this Jonny. lmao! |
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Title: Re: /S Post by Jonny on Nov 17th, 2005, 7:57pm on 11/17/05 at 18:57:46, jangus wrote:
Well, at least you ruled out all the bull- shit ;;D |
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Title: Re: /S Post by BobG on Nov 17th, 2005, 8:13pm on 11/17/05 at 19:57:29, Jonny wrote:
LMAO! Quantum Energetics? Isn’t that the Canadian Company that sells hand grenades? |
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Title: Re: Who is who here to the newcommers Post by jangus on Nov 17th, 2005, 9:16pm Like I said folks... Quantum Energetics has honestly been the only real "cure" I've found in 26 years. You can joke about it, but if relief is what you're looking for... I strongly suggest finding a knowledgeable practitioner and having a few sessions. It just might be what you're head is asking for.http://www.picturetrail.com/gallery/view?p=999&gid=8725023&uid=4173414&members=1 |
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Title: Re: Who is who here to the newcommers Post by E-Double on Nov 17th, 2005, 9:23pm Welcome JohhnyA. Whatever works for ya. Sounds like quackery to me, however, yrs. before traditional meds there were things used to treat everything right??? Oh yeah..here is what's supposed to be in the little red box: http://pic19.picturetrail.com/VOL1063/4173414/8725023/119112106.jpg |
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Title: Re: Who is who here to the newcommers Post by jangus on Nov 17th, 2005, 9:36pm http://quantumenergeticshealing.com/aboutqe.html |
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Title: Re: Who is who here to the newcommers Post by Dan_The_Man_Howell on Nov 18th, 2005, 12:01am Thanks Margi! I cant try the pic thing just yet, I got viruses AND spywares in my comp. allready! Im afraid to do any thing. I barely got on the net . I have to sign out and turn off my comp. for now untill i can have some one fix it so Ill be on the net mon. and wed. from school. Tlk to you then . dan |
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Title: Re: Who is who here to the newcommers Post by Dan_The_Man_Howell on Nov 19th, 2005, 11:57pm [img][/img]http://pic18.picturetrail.com/VOL883/4174566/8727703/119321084.jpg I hope this works! dan |
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Title: Re: Who is who here to the newcommers Post by Dan_The_Man_Howell on Nov 19th, 2005, 11:59pm http://[/img]http://pic18.picturetrail.com/VOL883/4174566/8727703/119321084.jpg[img] maybe this time ! |
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Title: Re: Who is who here to the newcommers Post by thebbz on Nov 21st, 2005, 9:37pm testing 1,2,http://i11.photobucket.com/albums/a162/thebbz/A10_1_lg.jpg |
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Title: Re: Who is who here to the newcommers Post by Dan_The_Man_Howell on Nov 24th, 2005, 4:27pm http://i27.photobucket.com/albums/c164/mydboy00/aprilandme080.jpg |
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Title: Re: Who is who here to the newcommers Post by LeLimey on Nov 24th, 2005, 4:31pm Hi Dan! Good to see you looking so much better than in the pics your mum showed me in Dallas. I don't ever want to see you looking like that again y'hear?! Nice to have you here love Helen X |
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Title: Re: Who is who here to the newcommers Post by Linda_Howell on Nov 24th, 2005, 4:33pm THAT'S MY BOY!!!!!!!!! Linda |
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Title: Re: Who is who here to the newcommers Post by Dan_The_Man_Howell on Nov 24th, 2005, 4:40pm http://i27.photobucket.com/albums/c164/mydboy00/aprilandme096.jpghttp://i27.photobucket.com/albums/c164/mydboy00/aprilandme064.jpg so here they are! finally ! Enjoy |
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Title: Re: Who is who here to the newcommers Post by Margi on Nov 24th, 2005, 4:45pm here's your 2nd pic, Dan... there was an extra space in there... you've sure got your mom's eyes. http://i27.photobucket.com/albums/c164/mydboy00/aprilandme064.jpg |
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Title: Re: Who is who here to the newcommers Post by E-Double on Nov 24th, 2005, 8:48pm on 11/24/05 at 16:45:26, Margi wrote:
He sure does! Nice to "meet" ya. You have a hell of a groovy mommy |
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Title: Re: Who is who here to the newcommers Post by Dan_The_Man_Howell on Nov 26th, 2005, 2:31pm Thanks for putting that pic up margi And YES, I do have gorgeous eyes dont I? ::) should I just call you E e double? Nice to meet you too. were do you all live? Mom, do you have yahoo IM? thats the mess. I use. I still cant seem to find a chat room or I M place heres a pic of me and my neice kristen. shes got the best eyes......http://i27.photobucket.com/albums/c164/mydboy00/IMG_0757.jpg |
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Title: Re: Who is who here to the newcommers Post by BarbaraD on Nov 30th, 2005, 11:27am Hi, I'm Barb D and I've been here since 98 (ok I'm an OLDIE). I'm electronically challenged so can't post a picture so you'll just have to believe I'm 29, 5'2, and a beautiful blonde (yeah right and I've got a bridge in Brooklyn that's for sale too). I'm a chronic clusterhead, a recent widow with a four year old grandson (if you have about four days I'll tell you about him!). I'm a semi-retired accountant who's looking forward to moving to the country and watching my grandson grow and keeping up with the gossip (not much else to do in the country). For all of you who've found this site - welcome to Clusterville. It's the best place to come for support and understanding. It's a place where you'll find someone who "understands" what you're going thru, someone who can make you laugh when you're hurting and want to give up and someone who "really" cares. Hugs to you all, BD |
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Title: Re: Who is who here to the newcommers Post by rubberplant on Dec 19th, 2005, 7:20am Hi all, It's good to read about everyone again! It's good to know you're all still here! I haven't been around for a while as I have been PF since 4 or 5 weeks after my son was born. About 16 months ago. Just been put on Citalopram for a bout of depression. (Will start a new post on that rather than jump this thread) Looks like I might have just started a cycle in the last two days. :'( http://homepage.mac.com/rubber.plant/james-gardner/Pictures/jamesgardner.jpg Best Wishes to all Strange how you can miss people you've never met James |
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Title: Re: Who is who here to the newcommers Post by Ree on Jan 15th, 2006, 3:03pm Linda H... your son is adorable.....jussssss like you and your little grand daughter is sooooo sweet... nice family love ree |
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Title: Re: Who is who here to the newcommers Post by gtjim on Jan 16th, 2006, 8:22am hi, my name is jim and im just getting over a ch kip 7. i live in australia and was diagnosed with this last week. this site rocks! if i didnt stumble onto this site i wouldnt have known about the icepack trick or the coffee trick. THANKYOU.these two things have helped me immensley, plus im on verapamil(not sure if it is really helping though). ch SUCKS BIG TIME are there any bad short or long term side effects of using verapamil? |
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Title: Re: Who is who here to the newcommers Post by upnover on Jan 19th, 2006, 11:28am Hi I'm new here but have been a ch for about 14yrs.. 35yrs old married with two great girls 18mths and 7yrs old. I wish I had found this site a long time ago but better late than never. [img][/img]http://community.webshots.com/photo/320021053/1320027437068252862hmMeej# |
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Title: Re: Who is who here to the newcommers Post by E-Double on Jan 19th, 2006, 5:34pm on 01/19/06 at 11:28:42, upnover wrote:
There ya go Tom! Now we can see ya. Sweet Jeep! Eric |
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Title: Re: Who is who here to the newcommers Post by upnover on Jan 20th, 2006, 10:23am Thanks E my head and that steering wheel have a few yrs of history if you know what I mean? |
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Title: Re: Who is who here to the newcommers Post by marlinsfan on Jan 20th, 2006, 10:37am Welcome, tom. Still can't see the pic, though... |
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Title: Re: Who is who here to the newcommers Post by upnover on Jan 20th, 2006, 5:40pm try this for the pic http://community.webshots.com/photo/320021053/1320027437068252862hmMeej# you can't really see much but its really the only pic of me I have |
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Title: Re: Who is who here to the newcommers Post by purpleydog on Jan 22nd, 2006, 4:58pm http://im1.shutterfly.com/procserv/47b6df03b3127cce96982008744400000005108AYs3LJs5cNz Here I am talking to another CH'er on Skype. I've had these damn things since May of 2000. I was diagnosed very shortly after I that by my GP. I started out being episodic, and went chronic almost a year ago. At first, there wasn't much that worked for me, but after this last cycle started 22 months ago, I found out trex injections work, and O2 also. I've decided that I can't let this run my life, or that's all my life would be. I deal with it and move on. There's always the thought in the back of my mind, knowing right when the next hit is coming. But I keep it there, and when they come, they come. Not to say I'm not a cursing crying idiot when I'm getting hit. But then it's over. And they always end. Always. Chris |
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Title: Re: Who is who here to the newcommers Post by agonymum on Jan 23rd, 2006, 2:09am http://www.pixpond.com/1/dskvc.jpg hi im a newbie , this is me with my beautiful neice , i have 2 children a son aged 16 and a daughter aged 8 , thay are my world . i feel as though i have found an oasis here , wish none of us had to suffer this , but i dont feel alone anymore , thankyou all . |
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Title: Re: Who is who here to the newcommers Post by wildhaus on Jan 29th, 2006, 9:18am Hi my name is Michael (from Switzerland) and I am new to this 'global village'.... and new to this CH, just over 6 month trying to get used to all this...... and gratefull to you all for the usefull information and the support I got when I joined a few weeks ago...... http://im1.shutterfly.com/procserv/47b6df08b3127cce96b82ab3988f00000010100AbMmbFu4YsWNAhttp://im1.shutterfly.com/procserv/47b6df08b3127cce96b97199796c00000010100AbMmbFu4YsWNAhttp://im1.shutterfly.com/procserv/47b6dc07b3127cce973c52ea12ae00000010100AbMmbFu4YsWNA my two boys... and MOM.....you and your MOM are my lifesavers....... and me...... http://im1.shutterfly.com/procserv/47b6df08b3127cce96b816c398e100000010100AbMmbFu4YsWNA the way I see the world when I am PF........ http://im1.shutterfly.com/procserv/47b6df08b3127cce96b82ab219be00000010100AbMmbFu4YsWNA and the way we have it at the moment ........ |
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Title: Re: Who is who here to the newcommers Post by Red8ball on Jan 31st, 2006, 11:05pm Hello... new here. Started a thread earlier today, but this seems like a good place to introduce myself again. My name is Eddie, I'm 25 and have had CH since '01. In fact, I feel one coming on now. I live in L.A., CA, and feel that I'm learning a lot on this page, and look forward to learning more. I'm gonna try to put a pic in here, soon as I figure out how to do that... ...couldn't figure it out, so in the meantime just use your imagination.... |
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Title: Re: Who is who here to the newcommers Post by Richr8 on Feb 1st, 2006, 10:09am Hi all! I'm Rich from Tucson AZ. I'v been a sufferer since 1992 and found this CH oasis about two weeks ago. Episodic with 12 week annual visits from the beast. I was recently divorced fom my wife of thirty five years, so I was up against this one on my own, that is until I found this place and all of you wonderful folks . I really think you saved my life. I learned so much here and found a connection that I truly needed, it gives you that little bit to hold on for. The wife and I have raised four wonderful boys and look at ours as a complete, and not nessarily as a failed marraige and wiil one day soon be able to continue on as freinds. My boys and I have a great rlationship, but the timing in all of our lives right now and their ages, (18-27) have us in different places at this time. My current cycle is ending, but I will remain here to support my family of clusterheads now, and forever. Love you guys, Rich /Richr8 P.S. E-double was kind enough to post pic in the post below. |
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Title: Re: One more try on the pic! Post by E-Double on Feb 3rd, 2006, 10:36am on 02/03/06 at 09:26:16, Richr8 wrote:
Hey Rich! |
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Title: Re: Who is who here to the newcommers Post by FramCire on Feb 3rd, 2006, 12:20pm Hi, I'm Eric and I've been around for a few months. I'm in my mid 30's and I am a stay-at-home dad. I'm originally from Massachusetts and now live in Missouri. I have had CHs since Fall of 2004 (which I believe was my payment for the Sox winning the Series). Anyway, if there is a E-Double fan club, I'd like to join. Along with many others here, he has been ahuge help and is the main reason (outside of the person who runs this site) I sleep 5-6 hours a night right now. I used to work in early childhood special education but now (as I said before) I stay at home with our 2 kids. Here are my 2 boys. http://www.larrydablemont.com/rocknroll1.jpg http://www.larrydablemont.com/rocknroll2.jpg Here is a picture of me at Game 4 of the 2004 World Series. It was my 1st day without HAs after my first cycle. http://www.larrydablemont.com/framcard.jpg |
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Title: Welcome!,and sign me up.. Post by Richr8 on Feb 3rd, 2006, 1:53pm .. for the, "E-Double" fan club as well. Eric(E-double) along with many other here got me through somre really tough times too. It's truly amazing how much advice and comfort you'll find here. Really a great bunch of folks willing to help and share. Take the time to vist all of the links and read all that you can. Not everything works for everyone and you will pull together odd combinations of things for you CH toolkit, and best yet, someone is always here to listen. Wishing you pfdan Rich |
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Title: Re: Who is who here to the newcommers Post by Jesus_Loves_Darwin on Feb 6th, 2006, 8:07pm 31 year old male. New to the site as of this morning. I can't beleive these things are real. Had my first cycle in Feb 1998, (undiagnosed), the 2nd in Feb, 2003 (diagnosed & treated with imitrex) and the 3rd started 3 days ago. So much for being a month for love.....Now I'm dreading going to sleep tonight, especially knowing that the one thing that usually helps me sleep (2 pints of Guinness) could be a trigger for the pain. I've also been thinking about all of the recreational hallucinogens I took in my early 20's and if they are somehow coming back to haunt me. Could this be a cause of the CH???? In addition to these mind altering substances, I was on Zoloft for about a year and about 30 days ago, stopped taking these. Until Friday I have felt great with a good diet and daily exercise.... Please help me understand what is causing this pain, and what can be done to make it stop..... |
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Title: Re: Who is who here to the newcommers Post by Kris_in_SJ on Feb 6th, 2006, 8:17pm Hi Jesus_loves_Darwin Don't know quite what to make of your moniker, but welcome. You might try posting your story as a new topic introducing yourself. There's much to be learned here - about the syndrome - and its various treatments. There are even quite a few who would tell you that your drug experiments of a few years back might have helped delay the onset of this disease. Read all you can. Help is here - as well as the greatest group of understanding supporters anywhere. Hugs, Kris |
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Title: Re: Who is who here to the newcommers Post by Jonny on Feb 6th, 2006, 8:22pm on 02/06/06 at 20:07:29, Jesus_Loves_Darwin wrote:
I doubt it.... Check here http://www.clusterbusters.com/ This site was built by some dudes that come to this site. Welcome aboard....sorry you have to be here my friend!! |
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Title: Re: Who is who here to the newcommers Post by mt240sx on Feb 7th, 2006, 9:45am Hi my name is matt and i am a chhead. I just started my first cluster in mid December 2005 i did alot of research for 3-4 days and figured that i had ch's. went to pcp/doc and to not influence his decision i played dumb . guess what he diagnosed me w/ ch i guess i got lucky ,well not really, I have ch's. I am on hour three of what started out as a kip 8/9 and have been fighting mini ch's since 4:00 p.m. est yesterday, 2 fiorocet in my blood, hot shower, sitting in front of puter rocking w/a cold towel on my neck. lol and here i am letting everyone know me. Sorry for the book thank's for the site. see everyone soon |
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Title: Re: Who is who here to the newcommers Post by SmuTTy on Feb 7th, 2006, 5:29pm hi im Andy 34 from scotland ive had CH for abt 8yrs now but i must admit i thought i had it bad until i read some of the posts. im married with 4 stepdaughters and a son and im so lucky to have my family they really do help me just by bein there, they dont do anything for me wen ive got the headaches but they r there wen theyve gone and for that im so thankful. i dont really know wot to write at the mo as im knew to this and soz but i haven't got a pic of myself. im currently suffering a CH attack at the minute. ive been prescribed sumatriptan 100MG tablets and they do work the only trouble i have is that the CH happen so quickly that i take normal pain killers at the start of 1 hopin that it is a normal headache because im scared of running out of my sumatriptan then its upon me and god do i feel it ive started bashing my right temple against my fist at the mo but again im worried it will get worse or progress to even more bashing. dont know if i should of written all this here and said wot i have. SmuTTy |
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Title: Re: Who is who here to the newcommers Post by Jonny on Feb 7th, 2006, 6:04pm You did just fine, Smutty....have you tried oxygen? |
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Title: Re: Who is who here to the newcommers Post by LeLimey on Feb 7th, 2006, 6:07pm Hiya Smuts, Come down on the board and start a new thread so we can help you properly instead of it getting all caught up on this thread. There is ALOT we can do and suggest to help you, starting with O2 as the King has said and also.. imigran tablets?! We need to talk! That is so not what you need! Let's get you sorted ASAP ok? Helen |
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Title: Re: Who is who here to the newcommers Post by Dragnlance on Feb 9th, 2006, 11:35pm Hello, My name is Lance. You may have seen a few posts from me in the last few days, and wondered who I am. Ok, here goes. I was finally "officially diagnosed" chronic CH less than 5 years ago. (sorry, dealing with a hit as I write this, so mind not up to speed) Anyway I had gone thru hundereds of doctors over the years, trying to find one that knew something about HA. Finally I made a trip to the local emergency room, and found an ER Doc who actually knew how to abort an HA. What a shock. Some of the worst diagnosis I have had... One doctor made me wear a neck brace for 3 days!! I did it for 2 days, because I had no idea, but since it had no effect (go figure), I stopped wearing, and cancelled the Physical therapy that he also scheduled. I had one doctor tell me that headaches do not get as bad as I described, and walked out on me. Many, Oh so many just prescribed all the usual pain killers. I was accused in the ER once that I was looking for drugs, and they even sent a nurse in to test it by asking if I wanted a morphine shot. When I screamed at her that I didnt want the damn morphine, and to keep the shit away from me, they suddenly became interested in helping me. I am a Computer Repair Technician, a digital artist, outdoorsman. Not quite your typical geek. (I post my picture on my website at www.digital-phantasies.com ) I have been described as "too honest for my own good", by my customers. I am known for my smile, and many of my customers still have no idea that I have CH. I did share Simon's letter with some of my regulars, since they know I have headaches, but not how bad. I hope this gives you a little insight to who I am. The artwork I display on my website will also give you some more insights. Here's wishing you all Pain Free dayz, nitez, weekz and yearz!!http://www.digital-phantasies.com/Black-and-white-me.jpg |
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Title: Re: Who is who here to the newcommers Post by Chip80 on Feb 14th, 2006, 2:49pm Hi all, my name is Carl and I’m new here. I can’t believe that this problem I’ve lived with for the past 20 years is actually a known medical condition. I’ve been misdiagnosed every time, as doctors did sinus x-rays and CT scans, only to find nothing every time. I’ve also been seeing a chiropractor every 2 weeks for the past 10 years, falsely believing that the relief I got after several weeks of intense adjustments was actually curing the problem. I’d been free of the headaches for about a year and a half, but when they started again around 6 weeks ago, I really got mad and determined to finally find out what was really going on. I finally went to a neurologist and found the information about cluster headaches on his web site. I was shocked! Everything mentioned fit me to a tee. My history: 40, male, married, 2 kids in college. Live in Michigan CH’s are always on the right side of my face, behind the eye, with pain in back of neck and top of right shoulder. Right eye waters. Right nasal passage completely blocks up. Severe attacks will actually cause my body to twitch involuntarily when I get the ice pick stabbing sensation in the back of my eye. CH cycle always starts in Dec or Jan and lasts 4-6 weeks. Remission time typically 1 or 2 years. CH always starts in the evening when I go to sleep. 1-2 times a night. Sure fire triggers. Alcohol, smelling perfume that contains Orace root, oxygen deprivation. Things that have worked for me to abort the CH – HOT shower on neck while stretching if done in the first few minutes. – Working out until almost totally exhausted. Increases oxygen level in bloodstream. Drugs I’ve tried Flexeril 10mg (because I thought the cause was muscle spasms) combined with Vicodin 7.5/750 (I’d use a double dose). If I got lucky the pain would be masked a little bit, but this generally didn’t work well. Recently my neurologist put me on Prednisone 20mg. This immediately stopped the attack. However, as the dosage was reduced the attacks came back. My side effects were – insomnia and a change in my voice at first which has since returned to normal. First CHs I can remember were my senior year in high school and would always be triggered during swim team practice. My theory about this is oxygen deprivation due to breathing the heavy layer of chlorine gas on the surface of the pool was the trigger. I eventually had to quit the team because of the headaches. The next recurrence of CHs happened approximately 11 years later, after I was involved in a bicycle racing accident. I went over the bars at approx 30mph and into the payment. I was unconscious for 15min. Suffered a severe concussion (the helmet saved my life!) and completely tore all connective tissue from under my right shoulder blade and back. It took me about a year and a half to heal physically. The memory problems caused by the closed head injury took much longer to overcome, but my brain “re-wired” and my memory is better than ever now. From the time I had my accident until yesterday, I firmly believed that the headaches I was having were due to scare tissue and muscle spasms in my right shoulder from the racing accident. Now I believe that the CH’s are due to the head trauma that I suffered in the accident. This gives me an entirely different way of attacking this problem. I finally feel informed and empowered about this problem and will defeat this beast. I just put new windows in my house this year, so the place is sealed up pretty well. Little fresh air gets in or out. I now know why using my wood burning stone to heat the house was triggering an attack. It is because the stove is consuming the oxygen in the house which is sealed up like a drum. As soon as I open a window to get fresh air in or I go outside for 5-10 minutes the CH attack subsides. For me, aside from the triggers of alcohol and perfume, I believe my triggers are all related to air quality (or should I say the lack of it). I have replaced the air filtration unit on my furnace, shut down the wood burning stove, humidified my house better, and last night for the first night in 6 weeks I slept like a baby with no problems. |
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Title: Re: Who is who here to the newcommers Post by glcdawg on Feb 19th, 2006, 10:31am Hi, everyone i'm 39 and just found this awsome site.Its great to know that i'm not alone in my private hell. Hope to get to know u all soon. ps-thanks for being there. |
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Title: Re: Who is who here to the newcommers Post by Jasmyn on Feb 19th, 2006, 4:17pm Welcome Carl and glcdawg! You are home now. This is the place to be to get support and give support, we are all rowing in the same boat. Wishing you PF times. |
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Title: Re: Who is who here to the newcommers Post by FKD on Mar 1st, 2006, 9:08am http://img271.photo.163.com/kaedar/33656463/901130911.jpg hello, I am Kai-Ta,Feng , I've had CH since 1980,Finally diagnosed in 1999, this cycle been from 2/5/2006 to now, I took Prednisone Acetate Tablets 15mg*3/day.It seems worked. |
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Title: Re: Who is who here to the newcommers Post by Gamliel on Mar 5th, 2006, 9:43pm painted shadows over night's shadows shining pain glistening, writhing in my rain covered streets witnessed sodium lamplight listens to muffled cries resist and fight red caps full of bitter reminders The gray is getting paler now with each hot blade inching through my head sleep the good sleep don't look up at night it's up there somewhere; don't call it down it comes when you look there slips away when you resign night the good night head through the pillow head through the wall the painted walls painting shades over the high, long pain. From a CH diary, from a while ago, from a currently painless man. I didn't know how not alone I was. I guess there is some comfort in the discovery that I may not have a tumor burrowing in my matter...but I, as you, suffer alone. Through this however, we can be better. |
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Title: Re: Who is who here to the newcommers Post by jdboles on Mar 12th, 2006, 4:22pm Hi I'm also in Toronto. Just learned about Cluster headaches. I've been cronic for 7 months, can you recommend any professionals in TO that deal/treat with CH? My neurologist has not been helpfull so far... Thanks ~Josh |
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Title: Re: Who is who here to the newcommers Post by Yournotcrazy on Mar 13th, 2006, 11:56am Newbie here, Although not to CH. 36 yo male. Sufferer since 98. Mine "Were" 24/7 every 4 hours. .01% of the population. I have a few bullet holes, which many years later I found was normal and now a retired, disabled paramedic. "Adam Sandler" SNL. with Chris Farely "God give me Cancer" The answer is there for us to find it. Word, Yournotcrazy!!!!!! |
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Title: Re: Who is who here to the newcommers Post by Mattrf on Mar 29th, 2006, 1:42pm http://i65.photobucket.com/albums/h209/mfranzen/IMG_1008.jpg My name is Matt, This was in Hawaii two years ago and about two months in on my first CH cycle, did not make for a great vacation. I was diagnosed with CH after coming back from Hawaii and it lasted 9 months. It started again this past December and 3.5 months in and still hating the beast. I live in California in the bay area and work for Stanford University as an IT manager in a research center, to bad they don’t research CH. Lol I found this site just a few weeks ago and it has truly been a life saver and has helped my entire family with understanding the beast. Befoe finding this site we thought the beast was stress related and I was putting blame on my family and they also were blaming themselves. I have a wife and two kids that without there support would make dealing with the beast next to imposable. I thank god for them being in my life and putting up with me and now I thank him for CH.com my second family. I think that any doctor that diagnoses CH should prescribe CH.com, without it we would all be lost. |
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Title: Re: Who is who here to the newcommers Post by Roxygirl on Mar 29th, 2006, 3:45pm http://pic20.picturetrail.com/VOL1187/4557999/9583102/136104430.jpg Hi, my name's Ali (Roxygirl). I just found this site about a week ago and I've already gotten tons of helpful information. Thanks! I was PF for about 6 years and unfortunately they found me again. I've been having cluster headaches for about 5 weeks straight now...every day. When I had them the first time around I had them for about 3 months out of the year for 7 years. I'm 28 years old and live in Kansas. I have a great boyfriend who has been very patient with me. Let's hope he continues. And I have two dogs that sit close by my side when I have my attacks. If it weren't for my boyfriend and my dogs I don't know how I'd survive. |
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Title: Welcome Post by Richr8 on Mar 29th, 2006, 4:13pm Nice smile. |
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Title: Re: Who is who here to the newcommers Post by marlinsfan on Mar 29th, 2006, 4:21pm STFU Richr8 [smiley=bash.gif] Never mind him, Ali. There's one in every crowd. |
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Title: Re: Who is who here to the newcommers Post by Richr8 on Mar 29th, 2006, 4:57pm For clarification, let me rephrase that. Ali, you have a lovely smile. No offense intended. Rich |
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Title: Re: Who is who here to the newcommers Post by Roxygirl on Mar 29th, 2006, 5:06pm Thanks. Not as nice as this smiley face though. ;;D |
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Title: Re: Who is who here to the newcommers Post by Scott S on Mar 30th, 2006, 12:49pm OK.. so sorry for not having pictures (8x10 color glossy pictures with circles and arrows on the back of each one... old reference that some may/ may not get). Anyway, I'm new to this board and look forward to utilizing it for information and hopefully not too often to type with one eye tearing and swollen shut, 1 hand on the keyoard and the other on my temple as I while away the hours until I can sleep... I am sure you know what I mean. I must say, the main page with those couple of testimoinals is an amazing collection of some of my experiences. Be well ALL... |
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Title: Re: Who is who here to the newcommers Post by medic1852 on Mar 30th, 2006, 1:10pm Well for those of you who don't know me..My name is Rodger, I am married to a wonderful woman and I refer to her as Amy~Do..I have two kids Shaun and Sierra I call them my HOGS..It is not a reference to their cleanliness or weight...it is a term of endearment from the Marines...Speaking of which I spent 8 years in my BELOVED MARINE CORPS and not ashamed of it....Currently I work as a PARAMEDIC I have done this for the last 15 years...which I love....I also teach and love to poke fun at others...I have been episodic since I was 15 years old and am now 40...I don't take any medicine for it, I did try Verapamill, didn't like the side effect....So I just use pacing and Oxygen..and time...oh and did I mention oxygen and pacing...so if you have any questions drop me a line or pm me...as I get to know you I will give you my phone number...feel free to email me (it is on my profile)..or holler at me on yahoooooo...I use medic 1852 there as well...anyways here is my ugly mug and the rest of my tribe.... Rodger Me!http://im1.shutterfly.com/procserv/47b5dc30b3127cce907ff4a55bca00000026108Act3Llszbt9 Me and Amy~Do so you dont think I am lying when you see how pretty she is and why the hell she is with me...http://im1.shutterfly.com/procserv/47b6dc23b3127cce9757e303c18f00000016108Act3Llszbt9 Just the Amy~Dohttp://im1.shutterfly.com/procserv/47b5df29b3127cce9e5666dada8700000016108Act3Llszbt9 And the HOGS!! Sierra (the girl 7 and Shaun the boy 5)http://im1.shutterfly.com/procserv/47b6dc23b3127cce9757e2a381b700000016108Act3Llszbt9 Well nice to meet you all... Rodger |
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Title: Re: Who is who here to the newcommers Post by Mattrf on Mar 31st, 2006, 11:12am Scott Welcome to the site and sorry you had to find us. I found a great site that lets you post pictures for free and gives you links so you can post them for your profile here. I accualy think someone here pointed me to them so who ever it was thanks. http://photobucket.com/ |
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Title: Re: Who is who here to the newcommers Post by Scott S on Mar 31st, 2006, 8:47pm Thanks for the welcome. Yes, I suppose it is an unfortunate circumstance to have to find the site, but the silver lining is that there is a site like this. For now, I remain PF since Nov 2005, but wouldn't surprise me if a cycle was coming up with the change in weather here in the northeast. I keep my fingers crossed to hold it off. Thanks for the info about the pictures.. I will check it out. Be well. |
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Title: Re: Who is who here to the newcommers Post by Jonny on Mar 31st, 2006, 9:09pm If ever I am having a heart attack and you come across me, ....EMT or not http://im1.shutterfly.com/procserv/47b5dc30b3127cce907ff4a55bca00000026108Act3Llszbt9 Let me die!!!!! ;;D |
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Title: Re: Who is who here to the newcommers Post by zwibbs/Scott on Apr 1st, 2006, 12:48pm The only picture I have is with my daughter, and it is sideways......sorryhttp://i53.photobucket.com/albums/g50/zwibbs11/medad.jpg |
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Title: Re: Who is who here to the newcommers Post by E-Double on Apr 1st, 2006, 12:54pm Great to see your face Scott!!!!!!!! |
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Title: Re: Who is who here to the newcommers Post by zwibbs/Scott on Apr 2nd, 2006, 3:14am Yes finally. I just can't stop laughing about Jonny's post to Medic !!! |
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Title: Re: Who is who here to the newcommers Post by Jonny on Apr 3rd, 2006, 6:52pm Fixed it for ya, Bro ;) http://im1.shutterfly.com/procserv/47b6da22b3127cce88374525807b00000025118AZM2bNk5bM6 Edit to add:....Thats one beautiful kid you have there, hope you own a baseball bat or a gun ;;D |
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Title: Re: Who is who here to the newcommers Post by zwibbs/Scott on Apr 4th, 2006, 12:32am Thanks Jonny----She got her looks from her mother--believe me ! |
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Title: Re: Who is who here to the newcommers Post by Eye Dee 10 Tee on Apr 8th, 2006, 2:02am I'm Dale from Oregon, just joined this board today or yesterday or some recent time between episodes. This is year 5 or 6 for me, and I am dancing with the beast week 5 in this cycle. I am a teacher and have now missed five weeks of class.... I am survived by my wonderful wife and three awesome little scooters. Thanks for this site! http://www.fisher5.org/images/fisher5.jpg |
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Title: Welcome Dale! Post by Richr8 on Apr 10th, 2006, 10:25am That's agreat looking crew you've got there. Now jump in and start learning, or just row. We're here for you. |
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Title: Re: Who is who here to the newcommers Post by mardiganseraph on Apr 12th, 2006, 10:01am hey yall, My name is marcus and I am extremely new at this whole clusterhead thing. back in 99 my uncle was diagnosed with clusters. 5 years later I was diagnosed with migraines..... when they went away after about 9 months I thought I was cured. now they are back and more intense than ever before. when i talked to my uncle about what the pain level was like, he said it couldnt be anything other than clusters then he reffered me to this site and told me to pray. I am only 23 years old and have been suffering from these CHs since my 1st tour in the desert. yes i am military. what can i possibly do? the military docs keep changing my prescriptions around and I'm tired of seeking an answer in pain relief. and is this common in people my age? i have no stress and love what i do. HELP!!!!!! NEWBIE mardiganseraph AKA Marcus |
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Title: Re: Who is who here to the newcommers Post by Garys_Girl on Apr 12th, 2006, 7:38pm Marcus, Clusters can hit at any age, and it is FREQUENTLY misdiagnosed - often for decades, if not years. Now that we've figured out what hubby has, when he thinks back on it, he's realized this goes back to when he was 17. His cycles were short with years inbetween until he hit his early 30s. We're both 43 now, and we're heading into week 7. Apart from the meds, have you tried 02 yet? It's a very effective abortive for many most of the time. Click on the link on the left. It required specific PROPER equipment. Also check out the Kudzu thread in the Medications section of the board. It's helping hubby quite a bit. Sorry you had to seek out this site, but there's loads of information available here. Unfortunately there's just nothing that works all the time for everyone. It seems to be a very individual thing - and there's just not enough research being done. No one knows what causes it yet, though it appears to be somehow linked to the hypothalamus. Wishing you pain free days! And kick around here and ask, ask, ask. Laurie |
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Title: 4Re: Who is who here to the newcommers Post by wildhaus on Apr 22nd, 2006, 7:20am http://im1.shutterfly.com/procserv/47b6da03b3127cce88da45ad292600000016100AbMmbFu4YsWNA Just an update..... My „personal support team“ ..... .....I LOVE YOU SO MUCH........... |
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Title: Re: Who is who here to the newcommers Post by zwibbs/Scott on Apr 22nd, 2006, 4:31pm Great looking bunch !!! Very nice wild. |
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Title: Re: Who is who here to the newcommers Post by PV on Apr 29th, 2006, 6:24pm Hi everybody! had already thrown in the ocasional post, but never introduced myself: CH since 1977 (I think, can't really remember anymore). No I'm 47 and I'm just ending an episode! went un- and misdiagnosed for more than 15 years. At some point I never wanted to see a doctor again, I had the feeling whenever I started treating - it got worse! I started with 2 week episodes every 8 - 10 months, the I moved to 4 week episodes every 1.5 years, now I have 6 week episodes and the last two remissions were 2.5 and 3 years. This was my first episode on O2 - It took about 3 weeks to get all the right equipment (mask, flow regulator) and I'm still not sure about it. Yes it can abort 95% of my attacks, but during peak time I had to get up every 2 hours, so for a few weeks I had 3 - 6 attacks a day (night). It was never that often before. Also my shadows were more persistent, stronger. But then again, I don't know if the o2 was the cause, or I was just lucky that I discovered O2 just in time for this episode. I mean CH keeps on changing on me and a lot of stuff I tried and what helped for 1 episode didn't any longer for the next. Anyway, this site has been of immense help to me! Thank You all! PV |
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Title: Re: Who is who here to the newcommers Post by Drew_Va on May 3rd, 2006, 9:45am New here but I thought I would add to this intersesting thread. I am 43 and have had ch for 24 years. I am married for 12 years to a wonderful gal and have a 6 year old daughter and a 6 month old daughter. I am the second from the right in the picture. Obviously, fishing is my passion. http://i73.photobucket.com/albums/i220/Drew_Va/IMG_1024.jpg |
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Title: Re: Who is who here to the newcommers Post by clarence on May 4th, 2006, 10:16am Not new, but thought I'd post a pic or two: I'm Casey, 29, and have had Clusters for about 5 years. Went Chronic last August. PhD Student at the Universtiy of Toronto. Here's me and my wife Sarah: http://www.translucentbeauty.net/community/images/CSsunset.jpg And here is the best moment in Hawaii last year ;;D: http://www.translucentbeauty.net/community/images/Best.jpg Casey |
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Title: Re: Who is who here to the newcommers Post by Budman on May 6th, 2006, 9:55pm http://pic12.picturetrail.com/VOL444/424763/572769/144748720.jpg I'm Budman (Buddy), 36, live in Lakeland, Florida. I do CAD drawings for a living. Have had the CH's since around '93, and like alot of others have just recently found out exactly what it is that these headaches are. Even though it sucks having these, its a tremendous relief to finally have a correct diagnosis! This site is a gold mine for strategies and support for dealing with CH. I love Christy, my girlfriend of 14 years, Football, (watching it) Fantasy Football, Golf, (playing it), Madden 2006, I play drums, love Metal. I have 2 dogs, China, and Football. Been a Bucs fan forever.....hold on..maybe THATS why I get these CH's! |
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Title: I have finally found what I have been looking for Post by colleena on May 8th, 2006, 10:46am I have had migraines since 7th grade and I am 41 now. No one has mentioned cluster headaches until last month. I found this website this morning while I wait for my doctor to call in more meds for me. I took the quiz and I cried when I read the results. The only thing is nothing was mentioned about tearing your ear off because of the pain. I can't believe people are out there that can understand my pain. My sisters always thought I made it up. I have printed out the test and will be making an appointment with a neurologist soon. Thank you. |
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Title: Re: Who is who here to the newcommers Post by clarence on May 8th, 2006, 10:59am Budman, Colleena, Welcome to the family. Correct diagnosis is key, and relieving when it finally comes. I am glad that you are getting in with a Neuro soon Colleena. That is a great step. I've said it before, there is no other place that I'd rather be with Cluster Headaches than right here. More info than you can digest, and more love than you can handle. We all know what we're going through, and that is priceless right there. While I would rather that you didn't have CH at all, I am happy to say welcome here! Casey |
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Title: Re: Who is who here to the newcommers Post by She-ra_mommy on May 9th, 2006, 10:30pm Hi I am Michal (sounds like Michelle) Iam 34 have been having CH since 04. |
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Title: Re: Who is who here to the newcommers Post by Katherinecm on May 14th, 2006, 12:38pm Hi, I'm Katy. I'm 27 & I've had CH since February 2003. I was lucky in that my first ER visit I got a doctor that has CH, so after some CAT & MRI scans to rule out anything else, he helped me pretty quickly. :D At first my triggers seemed to be getting secondary infections. But I'm not sure what triggered the last episode, which seems to have switched to chronic when I was taking Trex & verapamil. I blame the drugs. :-[ My dad had chronic headaches that I suspect were CH. He passed away two years ago so it's impossible to confirm this now. He had head injuries in Vietnam and literally had a steel plate in his head, so he always blamed that for the chronic headaches and pain in his left eye. I've been lurking here for a while, and finally joined to post a treatment I am experimenting with. I'm also considering writing an updated book about CH, since there doesn't seem to be a good one out there. It took me a while to find the message boards, but I immediately went to Barnes & Noble once I had my diagnosis. All of the information was wrong! :-X If anyone has specific ideas of what they'd like to see in a book, email me. Obviously people who've spent much time here are likely to be experts on their pain, the book I would write would more help with people newly diagnosed. ;) Katy |
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Title: Re: Who is who here to the newcommers Post by jimbeam on May 16th, 2006, 6:11am Hello every one. I was diagnosed with cronic clusters in Feb 01 with a 3 day episode. I had them for as long as i can remeamber. I have been looking in on the message board from time to time. Reading your postings have helps alot. I have a daughter 12 turing 13 (she acts 16)she has seen me at my worst and best with the beast. Bless her she has been through alought. I live and work in England but i'm from Pennsylvania USA. To all this is a great site and to hear others dealings with the beast hopefully now can chat with you. I was unable to interact with the site only could read. Take care there still tomarrow for crazy fun. |
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Title: Re: Who is who here to the newcommers Post by CUE on May 22nd, 2006, 7:07pm http://www.klassified.net/myspace/me.jpg Well, hello all. My name is Anthony (go by Tony mostly), and I am, of course, a fellow clusterhead. I only recently ran across this website during my current cluster cycle, but I have dealt with the "beast" since I was around 19 years old. I am currently 26, and I suffer the episodic type. My cycle usually starts up around spring (april-june) somewhere, but my periods of remission vary. For example, I haven't had a visit from the beast in the last 3 years or so. I was diagnosed fairly quickly due to the luck of working with a doctor whom had previous experience with this rare "curse." However, the first few battles I fought on my own being the stubborn person that I am believing that something so painful couldn't happen more than once.... or twice... or maybe it can. I posted some more details about my experiences in the guestbook, but to provide the short version, here are some of them. What works for me currently as an abortive seems to be only Imitrex injections. I tried the nasal spray in a desperate effort on a Sunday (couldn't get the injections anywhere), but they did NOTHING but waste my cash. As a cycle breaker, I am trying Prednisone this time around, but it is hard to say whether it has worked or whether the end of the cycle was already here. Finally, since my cycles are often too random along with the attacks from the beast, a preventative doesn't seem right for me. I don't like taking anything that I don't have too. However, I have tried Verapamil in the past (for a short time). I have read a lot of the information on this site before entering into this forum, so I hope to try many of the other options that might work for me (especially the Oxygen and/or the Imitrex tip). As for the about me, I am just a single guy battling the beast from time to time and doing my best to get by. Well, PFDs to you all, and I'll look forward to talking with you all in the future. |
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Title: Re: Who is who here to the newcommers Post by E-Double on May 22nd, 2006, 8:17pm Whattup Cue! Wishing you a brief cycle. There is pleanty to share and pleanty to learn. Stick around and enjoy your new home!!!! E |
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Title: Re: Who is who here to the newcommers Post by Jonny on May 22nd, 2006, 8:27pm Hey Cue dude, let me know if you have trouble getting 02 ....I can get you hooked up cheap! |
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Title: Re: Who is who here to the newcommers Post by CUE on May 26th, 2006, 10:55pm Thanks guys, and I'll be sure to take you up on the offer should the need arise. |
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Title: Re: Who is who here to the newcommers Post by ciaran on Jun 7th, 2006, 6:53am Hi, My Name is Ciaran im irish, 23, and I've had ch for 3 years, I always get a cycle around my birthday :( Great site helped my partner to understand more and I wish everyone well :) Pic will follow later |
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Title: Re: Who is who here to the newcommers Post by LeLimey on Jun 7th, 2006, 7:40am Hello Ciaran, Cead Mile Failte ;;D (My mother lives in Galway!) Tell us a bit more about yourself, what meds you take etc, start up a thread of your own so we can see if there is anything we can do to help. Looking forward to hearing from you and your other half too! Helen |
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Title: Re: Who is who here to the newcommers Post by ciaran on Jun 7th, 2006, 11:45am Ehh realise im being a typical bloke but just drink bottles and bottles of H2O as Im mad busy in work so cant leave to get shots, although if this cycle doesn't end soon I think I'll have to swallow my pride and see someone again about this! i "seem" to be better off then most as I havnt had a level 10 in over two years but at the mo Im getting alot of 6s and 7s:( Well done on the Irish Helen its great to see agus failte romhat 8) |
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Title: Re: Who is who here to the newcommers Post by LeLimey on Jun 7th, 2006, 12:01pm Oh don't be fooled Ciaran, its (practically) the only Irish I know that isn't swear words! How long do your cycles usually last? one tip I can give you is Red Bull, believe it or not alot of us here have had a lot of success chugging that at the onset of a hit but you have to get it early. Strong coffee can help alot too. Have a good look around here, there are alot of alternativetype therapies you might like to try if getting to the doctor is a problem. Id definitely recommend the red bull though! (ice cold red bull seems to help more and ice packs on the face and neck are very good too) We'll get you sorted! Helen |
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Title: Re: Who is who here to the newcommers Post by ciaran on Jun 7th, 2006, 3:51pm Cool red bull I'll try it in the mornin when I usually get the worst attacks! The cycles usually last 2-3 weeks although this one is a bit longer:( I read some espodic suffers became chronic? That’s kinda scary I can’t imagine anything worse, I can’t sympathize enough with them!!! Thanks Helen I'll let you know how it goes in the mornin |
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Title: Re: Who is who here to the newcommers Post by LeLimey on Jun 8th, 2006, 4:06am I'm a chronic Ciaran and we dread it from the other angle, the fear of waiting for it to come back! I guess its "the devil you know".... Good luck with the red bull today, I'll be checking in to see how you get on! :) |
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Title: Re: Who is who here to the newcommers Post by ciaran on Jun 8th, 2006, 11:40am Hey Helen, good news the beast rumbled this morning but 2 redbulls and 3 coffees later he went back asleep a pain free day so far and long may it last.......... now what works well to stop him waking up again? |
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Title: Re: Who is who here to the newcommers Post by LeLimey on Jun 8th, 2006, 11:43am Oh Ciaran, If I knew what would stop the bugger waking up I'd tell you in a heartbeat! I'm really really glad the redbull and coffee is working for you and long may it last. Who knows, maybe it'll even kick the bugger into submission for you! Let us know how you're doing okay? Helen |
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Title: Re: Who is who here to the newcommers Post by julieknfla on Jun 10th, 2006, 10:01am Hi, I'm Julie and this is my husband, Les. I'm an echo tech-a cardiac sonographer, and Les is in construction. We live in florida. |
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Title: Re: Who is who here to the newcommers Post by Jonny on Jun 10th, 2006, 10:04am http://img.photobucket.com/albums/v444/julieknfla/LesJulie.jpg ................................. ;;D |
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Title: Re: Who is who here to the newcommers Post by smfaison on Jun 13th, 2006, 10:02pm I am an episodic clusterhead. I managed to go 3 years between spells, but one just started. Now I am in for about 4 months of hell. |
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Title: Re: Who is who here to the newcommers Post by brewcrew on Jun 17th, 2006, 9:21pm Hi. I'm Bill. I've been here for awhile, but never thought to look for a thread like this. Anyhow, here's a picture of me playing with my band, The Empty Suits: http://home.wi.rr.com/pmitchell/postedimages/bill2.JPG I'm the one on the right in the white shirt. Husband, father, engineer by day, bass player in a rock and roll band by night. It's more for therapy than money. It's like vitamins to me. Began having CH around the time my son was born, in 1991. Thought for sure I had either a brain tumor or Multiple Sclerosis. I went so far as to write out my will by hand. Then I went to see a fantastic neurologist who diagnosed me right away and have been pretty successful treating the symptoms with Verapamil, Lithium, Amerge, Maxalt, and my fave, O2. I went chronic in 2002 and finally checked into the hospital for IV DHE treatment, which worked right away and lasted until 36 hours after I checked out. Got slammed with the worst week of Kip 8-10 headaches I've ever had, then they just went away for 9 months. Now I'm back to my regular cycles - 2 per year lasting 8-10 weeks, but very manageable with the above listed drugs. I value this place a great deal, and all of the souls that search for answers here. Nobody here should be discouraged when they find something that works - that's unforgiveable in my book. Those of you who are guilty of this know who you are and you ought to knock it off. Anyhow, I thank my lucky stars for each and every one of you. May your days and nights be pain free. Bill |
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Title: Re: Who is who here to the newcommers Post by Owch on Jul 13th, 2006, 3:59pm Hello my name is Chalen, dont even know what to write. just glad i found this place and see that im not alone. that helps in itself. i get chronic ch's that just pop up whenever the hell they feel like it. usually at the worst times of course. been having them since i was 20 im 27 now... luckily i dont get them every day multiple times like i used to or i dont think i would of made it this far. but they still drop me none-the-less, still fuck with my job and my life. Still trying to figure out how to cope, so here i am. I take no meds, got tired of pill after pill and trying to explain by the time i take this pill and i get it down im already gonna be full blown and layed out. so i stopped going to dr's. So i just get mine and go hide from the world till its over and wonder why me. I'm glad i found this site... i have lots of reading to do here. :) http://i47.photobucket.com/albums/f172/Chalen41/rightnow.jpg |
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Title: Re: Who is who here to the newcommers Post by alchemy on Jul 13th, 2006, 10:12pm Hey Chalen, welcome aboard. This is a great place for info and support. kick your shoes off and hang out awhile your no longer alone jim |
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Title: Re: Who is who here to the newcommers Post by Dissident on Jul 18th, 2006, 3:53am Let's see. My name is William S. (BJ for short - bill jr). I'm married to the love of my life, Leah. We've been together almost 10 years and are expecting our first baby in about 12 days (boy). I was born in Miami, moved all over the country as a kid (Cali, Texas, Georgia, Virginia) and wound up settling just outside of Orlando, FL. I'm helplessly addicted to politics and Taco Bell number 3 value meals. The latter of the two I could probably kick. I've suffered episodic CH for about 13 years now. Been hooked on this site since 2000 although I've only recently registered. I've been taking from this board for over 6 years now...it's time to TRY and give back Basic medical regimen...Prenisone taper Verapamil Shrooms & 02. more info and pics to come later...it's 3:52am and I'm just to tired to write anymore tonight. |
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Title: Re: Who is who here to the newcommers Post by chtrucker on Jul 18th, 2006, 6:59am Just found this site. My name is Al and I'm 53 . Been havtng HA's since I was 19. I had from 2 to 6 a week till I was 38 and then went a couple of months between episodes. Now at 53 its every 1 1/2-2 yrs. between. I'm going through an cycle now with only verapamil that was only prescribed 2 yrs. ago. I've been up since 10pm and been between a 3 and 9 twice. Down to a 3 now. I want to thank everyone for all the info as I will be seeing the doc and demanding some meds. I didn't think anything would help but live through it. Thanks again-AL |
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Title: Re: Who is who here to the newcommers Post by HarryH on Jul 20th, 2006, 8:52am Hello all! I'm Harry, 33yrs old and living in Delfzijl, the Netherlands... I was diagnosed with episodic CH 3 years ago, and thank god, I've only had 2 major cluster-attacks in those 3 years. Duration of a cluster seems to be 2-3 weeks, with ±4 attacks a day, mostly during the nightly hours. In which I have to deal with The Devil for about 30 minutes... The neuro in the hospital recognised almost instantly the symptoms (which seems to be a miracle!!!) and perscribed Verapamil 180mg. During my last Cluster, which ended about a week ago, I had 2 Verapamil a day, and took Ibuprofen like candy to ease off the pain... At its peak, I took (very) hot showers. And now, about 3 weeks later, i'm back at work. During the day i've got the ghost with me all the time, and I keep taking the Verapamil... The ghost I can handle, and the Devil appears now only once a night, so I guess the worst is over for now... :-/ |
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Title: New Member of the Spirit Sword Post by Riverwesterner on Jul 20th, 2006, 12:24pm My name's Jeff. I'm a teacher, writer and artist. I've been a CH for 12 years. Can't really tell you how I felt when I stumbled upon your site (now my site) and read the testimonials. I'm in the middle of a bad series and am emotionally raw. I wept when I read about others like myself who have reached deep inside to keep their hands on the steering wheel at the darkest moments of the deepest pain. I call my CH the Spirit Sword. My first CH hit me while I was walking down the street after work. It was as if some unseen spirit had slipped up behind me and thrust a sword in my right temple. I was sure it was a stroke. I ended up on the ground and somehow made it to the emergency room. I thought for sure I was a goner. Now, 12 years later I just count myself lucky when I'm not in a series. The worst of the headaches puts me in places I never thought I had the strength to survive. All other pain I compare to that pain and its made me able to cope with things I thought could not be survived. I've worked my way through a variety of treatments, all of them familiar to you I'm sure. When in a series I find jacking myself up on strong coffee helps take the edge off and I am currently using O2 (thank God for O2) and Maxalt. The Maxalt works sometimes but leaves me in a babbling brainwash. My wife, who is my best medicine, must suffer through the verbal diarrhea that comes after the CH passes. She also sufferes through her feelings of helplessness when the best of her ministrations do nothing to stop the sword. I'm very lucky. The blessing in all of this misery is that when the CH departs (usually after 45 minutes to three hours and as if the spirit-sword is pulled out by some merciful hand) I find myself feeling euphoric. Even more valuable and delightful is that I have bursts of creativity as if the right side of my brain is supercharged. I'm an artist and writer and after the CH passes I've write poetry and draw and paint images that please me greatly. As a result I've been reading poetry at a local open mic and have gotten some positive responses from poets I already have much respect for. Not sure this would happen if I did not have the CH. I want to say to all my brothers and sisters in Clusterville, I am so very happy to have found you and I wish you pain free days and nights and the hope that someday we'll find a way to appease the Spirit of the Sword. What doesn't kill you makes you stronger. Jeff |
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Title: Re: Who is who here to the newcommers Post by E-Double on Jul 20th, 2006, 1:52pm jeff, 1 week earlier and ya couldve nade the milwaukee conventuion,,,,,,,, welcome aboard |
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Title: Re: Who is who here to the newcommers Post by kevinpix on Jul 20th, 2006, 7:51pm my name is kevin, 36, clusterhead 4 yrs. I had surgery la st year, excellent sucess. fantom itches my only complaint. no more pills or pain. contact Dr. Hurt for semi cure. It worked for me. He is in Houston, Texas. My Godsend! I pray to all to contact him, he may be able to help get your life back. good luck! |
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Title: Re: Who is who here to the newcommers Post by LeLimey on Jul 20th, 2006, 8:32pm Hello Kevin, What is the surgery you had? Tell us more please. start a thread lower down on the meds and therapies board and lets hear how you're getting on :) Helen |
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Title: Re: Who is who here to the newcommers Post by Raptor700 on Jul 22nd, 2006, 4:52pm Hi, This is my first post. I am in the second week of my second episode. First CH started in fall 2002. I thought it wasnt coming back. 2-3 attacks per day. 5 weeks (1st episode) and I hope this episode is shorter... No medication, I was diagnosed at the very end of my first episode. But they did give me Maxalt. Never used it and I had thrown it away after a few years... Now I feel really stupid. Take care guys, I am going to bed, finally... |
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Title: Re: Who is who here to the newcommersst of all tha Post by mroc71 on Jul 29th, 2006, 8:29pm whats up people... marty williams 35 tattooist albuqueruq new mexico/seattle washington, no pix, but check my website first of all thanx for the help, and info, ive been a clusterhead since 1990, episodic, and misdiagnosed by more doctors, more time then i can remember. i hadnt had a cycle since '03 and finally thought these bastards were done....till last sunday when they came roaring back, im in the process of opening a new studio, have been stressed, and breathing paint fumes the last month, and man this cycle is as bad as i can remember. tuesday night just floored me, my girlfriend though i was crazy as i was bashing myself in the eye (im a lefty) with my tv remote as hard as i could, wednesday was no better either, i had googled headaches before in '03 and somehow came up empty. i found this site thursday night, and its been a godsend. nobody really understands wht we go through unless its happening to them. i feel better knowing that i now know whats wrong and im not the only one. thanx for the info, help, and support, especially dani's advice www.71tattoo.com |
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Title: Re: Who is who here to the newcommers Post by lvictor2 on Jul 30th, 2006, 5:53pm My name is Larry and I've been a CH since 2004. I'm a 57 year old male in Illinois. I have epilepsy and sleep apnea...not that those are related. I've only had one seizure in 1981 and been on dilantin ever since. I use a CPAP for apnea. The neurologist diagnosed me as CH almost immediately and put me on 10 lpm 100% Oxygen(thank goodness) and found almost immediate relief. In my first episodes I had tanks of O2 (2004). Then I got an oxygen concentrator which filters out the gases out of the air except oxygen. This way I can use it anytime I need it when I'm home...although I cant take it with me. I'm going to the neurologist on Friday to see if there are any meds I can take with me to work and out away from the house. I searched the site and found some I might ask the MD. about. The episodes have been getting worse each year...that is more intensity and more headaches per day. Thanks...Larry |
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Title: Re: Who is who here to the newcommers Post by lvictor2 on Jul 30th, 2006, 11:12pm Today is the worst day ever...I had 8 episodes. With the O2 it doesn't get past 10-15 minutes. How will I go to work??? Larry |
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Title: Re: Who is who here to the newcommers Post by jan on Jul 31st, 2006, 4:25pm Hi my name is Jan and I stay on a tiny island in the North of Scotland. I've chronic CH with little or no respite for 6 months. I've had Trigeminal Neuralgia for 8 years and thought that no pain could be as bad!!! Well wasn't I in for a nice surprise! I had to laugh when I read a posting that related being afraid to sleep with the Freddie Kruger movies- yeah well I'm well an truly caught in a nightmare. ;;D My kids say that my only redeeming quality in the past few months has been my sense of humour- they used to laugh an say I was insane- well now I;d probably get a certificate. [smiley=laugh.gif] Thanks to all who have posted their stories- its so nice to know that there are others who know that an Asprin be about as much use as a hole in the head- if you pardon the pun! Hope to hear from some of you soon |
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Title: Re: Who is who here to the newcommers Post by prcole18 on Aug 2nd, 2006, 5:18pm Hi I'm Paul 38 yrs old, Live in High Wycombe in the UK got 2 kids 18 & 10 yrs. Been having these lovely headaches for the last 6 years, the first 3 of which were absolute hell as all I was given was migraine treatment......not good! The first time I got a CH I dialled 999 for an Ambulance as I really thought I was a gonner! Will never forget the first time I put "cluster Headache" into google & found people experiencing the same as me, relieved.........you will never know. Thanks to this site & the peolple on here i've now educated my GP & finally got on the right treatment so hopefully some pain free time is on its way. In the photo with me is my girlfriend Sarah who has been unbelievable putting up with my condition. The first date we went on, I had a couple of buds (big mistake) went back to my house & while making coffee I felt that all too familiar feeling start in my head. I somehow had to expalin what was about to happen "by the way I get these sort of headaches" :-/ & this is before I had Imigran jabs. Iv'e proceeded to go straight into a kip10, thrown up & nearly passed out with the pain while she sat quietly in the bedroom for 45 minutes probably wondering what the hell she let herself in for. I certainly don't think she had previously ever had such an interesting 1st date! Anyway 4 years on she's still here so it couldn't have bothered her too much. Again a massive thanks to all the people who have given me advice & info with putting up with this condition. [http://i73.photobucket.com/albums/i231/prcole18_2006/P4130029.jpg |
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Title: Re: Who is who here to the newcommers Post by georgej on Aug 5th, 2006, 11:28pm Hi, I'm George. I'm an episodic clusterhead, a lefty, and have been for forty years. I used to cycle twice a year, but it's tapered off to once every three years. I live in Boise, Idaho with my wife, Elizabeth, and our daughter El. You'll often find me hanging out on the "Getting to Know Ya" board and on the "General" board. I lurked here when I was in cycle for about six years, but decided after the last one (earlier this year) to hang around for a while and see if I could lend a hand. I don't sleep much (never have) so I'm often here late. I'm not an expert in CH, and I'm certainly not a doctor, but there are plenty of knowledgeable people here, and we can certainly get you in touch with the right person. Best wishes for pain-free times ahead, George |
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Title: Re: Who is who here to the newcommers Post by Neil83 on Aug 8th, 2006, 5:29am Hello all I am Neil I am 22 but 23 on 25th of August (now theres a load of numbers. First got CH in winter 2003, after a really bad motorbike accident. I get them all year round, but its wrose in hot weather. Started off with small (baby) ones that were just bad pain. In summer 2004 they got worse and by 2005 I was having wall bashingly bad ones. Over the last few weeks I have actually been thorwing up due to them, doctors have said it is definately CH, was amazed that a doctor was aware of them. I also have a weird groove in my skull, over my pain zone. Showers help, but dont work and with me provention of a good diet and loads of liquid. I have a good team behind me, as most of my family are either in the medical profession or have some very high medical qulifications, so they are all working together to find what works and what doesn't For those interested in what we haven't worked out what doesn't work, drop me a pm and i will share all we have found out Good luck to all Neil |
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Title: Re: Who is who here to the newcommers Post by LeLimey on Aug 8th, 2006, 5:52am Hello Jan and Neil! Jan it must be difficult for you living on a small island, I know another sufferer on Mull who obviously has similar problems, drop me an IM if you like and I'll put you in touch with each other. Lets see if we can't get you sorted out with some help and support (from all of us!) Have you ever tried O2 by the way? Neil, My son is going to be 5 on the 21st and he has CH too. He's due his 3rd cycle anytime now. I hate hearing of anyone as young as you having to put up with this, it makes me more determined than ever to help as much as I can. What meds have you tried so far? Have YOU tried o2? I love the stuff, its the best abortive ever for me. I'm glad to hear you have a good support network behind you. Why don't you start a thread of your own listing your experiences to date? I'm sure alot of what you have to say would help others and we can put our heads together to help you as well :) Looking forward to hearing more from you Helen |
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Title: Re: Who is who here to the newcommers Post by Neil83 on Aug 8th, 2006, 1:21pm Hi Helen Funny thing, my long sufferer girlfirend is called Helen. I haven't tried O2, would really know where to get it from (please advise) I tried Feverfew (which is bleeping swearwords). We have tried anti-depressants (doctors advice) It worked amazingly well, didn't get a single headache, ut cos they work my messing with the chemicals in the brain and mine are balanced, it unbalanced them and actually gave me bad bad depression. am currently taking Gurana extract (which you put in water and it has no taste) it is working ok, in that with warm weather and not an amazing diet I have only had one in 8 days (and I think that was due to the fact I ate breakfast, then had a bag of crisps and a yogurt at lunch and by 7pm was having an attack) more investigation due. I usually find that walking in a cool environment is good, or a warm shower, also frozen pea on the pain zone is great, plus diet control is vital, along with water control. Where should I post my own thread about my diary or experiences? |
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Title: Re: Who is who here to the newcommers Post by LeLimey on Aug 8th, 2006, 5:18pm Hi Neil Well, your long suffering girlfriend just has to be incredible if she is a "helen" too.. it's obvious! ;) To get o2 just go to your doctor and tell him you want to try o2 as an abortive for CH, they have to fill in a HOOF form to send off to whatever O2 supplier does your area and then they call to arrange delivery. It all comes inclusive so you don't need to get a regulator anymore or a mask as they supply them. Personally I think the only mask worth using is a ClusterMasx (http://www.clustermasx.com). It was developed by a cluster sufferer and so is just the best thing you can stick your face in! Just under this thread are all the others, hit the start new topic button and set your own thread in action - looking forward to it! Helen |
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Title: Re: Who is who here to the newcommers Post by MiamiMike on Aug 9th, 2006, 2:17pm Hello Everyone, my name is Mike from Miami, fl. I'm 33 yrs old and suffering from migraines the past 3weeks. I get 2-3 attacks per day and recently finished all my imitrex. Dr says he does not want to prescribe more because I finished all 9 within a week. The web site seems great for different tips and treatment. Looking forward to learning more. |
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Title: Re: Who is who here to the newcommers Post by July_21_girl on Aug 10th, 2006, 8:40pm Hi, I am new here ;;D well, kinda I posted back in April-May and I took some time off! I moved from Florida to Pa I am much happier now :P I am happy to be back everyone was so kind to me when I joined. Crystal |
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Title: Re: Who is who here to the newcommers Post by LeLimey on Aug 10th, 2006, 9:08pm Hi Crystal! Its good to have you back! I've just seen your other thread and answered that, let us know how you are doing okay? Where in PA are you? Do you have doctors etc sorted out yet? If you are near the Jefferson Headache Centre then I can personally recommend two doctors there (not bad for someone on the ither side of the world eh?!) Don't be a stranger okay? Helen |
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Title: Re: Who is who here to the newcommers Post by July_21_girl on Aug 10th, 2006, 9:51pm Hi Again :) I am living just outside of Pittsburgh in a small town Sewickley it is very nice my husband grew up here and all of his family still here very nice to be so close to family :) I have not set a Dr up yet but I am on the look out and will have one by next week I hope. It seems like this dull pain may be a little stress or just change in weather and Alt.. ?? Long as I do not get back in a cycle I see myself as PF even tho I have a little knock in my head :) Crystal I'll keep in touch :) |
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Title: Re: Who is who here to the newcommers Post by serendipity on Aug 14th, 2006, 5:37pm Hey everyone. I joined this site back in...1999? It's been so long I can't remember. Anyway, I was away for a while and re-joined a couple of years ago, but only recently started posting instead of lurking. I figured it was time to give back to the community that has unknowingly helped me for so long. I've been an episodic cluster sufferer since 1989. I am 37 years old, married with three children (a daughter, age 18, and two sons, ages 17 and 9). My husband is a Major in the Army Reserves (after being active duty for 10 years) and is a pharmaceutial rep when he's not drilling. Too bad his products are cholesterol medications and not triptans! He just returned from a two-year deployment to Ft. Jackson, SC in June. I work for a financial consulting firm for dentists in Charlotte, North Carolina. Here's me with my two boys at a baseball game this past July 4. http://i16.photobucket.com/albums/b45/AliceNWondrland/FourthofJuly.jpg] |
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Title: Re: Who is who here to the newcommers Post by Soursmoke on Aug 21st, 2006, 6:02am Well I've been lurking [smiley=curtain.gif]around this site since 2002 and been a member since 2004 but I've never really posted. Since this last episode I've been reading more posts than I care to count and I felt that I should Introduce myself. [smiley=wave.gif] My name is Nick I'm 25 and I've had Episodic CHs since 1998, although I have begun to believe that I've had a few attacks since the age of 8. Anyway Its the same story as many here, I was misdiagnosed for many years untill I found this website, and even then I had to fight my doctor every step of the way in order to get what I needed. If you don't want the lowdown on my medical history skip the next paragraph. ;) I was in a car accident away from home when I was 18 and lost my glasses. So therefore when my first episode started within the week I naturally thought it was due to lack of corrected vision. After that episode I spent the next four years going through all of the Migraine medications as my clusters got stronger and stronger each cycle. My cycle was two times a year about a month and a half each time in the months of April to June then September to November. The all time low for me during those four years was when I tried to use the nasal imitrex spray to get rid of a kip 8, and ended up with trex trickling down into my mouth and throat. I didn't know projectile vomitting was really possible. [smiley=hurl.gif] So thats when I decided to take matters into my own hands, hence I turned to the internet and found this site. And eventually the Clusterbusters site as well. I went through all the medications here and the ones listed on OUCH as well with the exception of lithium. After getting no results I turned to clusterbusters, had some fungus tea [smiley=mellow.gif]and now my cycle only seems to be happening once a year july to september. About 3-8 CHs a day. I have had success with imitrex injections but they were to expensive even after using the wonderful technique listed here. O2 was an issue between my doctor and I, he wouldn't prescribe me the high flow tank because I'm a smoker. [smiley=smokin.gif] And he didn't seem to believe me when I said it would stop the headaches in their tracks, I had reports from the internet too. :'( So for this new and exciting cycle (5 kip 9-10s so far) i'm using Hawiian Baby woodrose seeds as my preventative measure. Which seems to work pretty good for me... at least this time. Red Bulls to stop shadows and abort some CHs. Lastly I wanted to mention an over the counter product that helped in the beginning of my cycle with kip 5s and below... HeadON [smiley=laugh.gif](I know it sounds ridiculous). Anyway this stuff is like $8.00 for a chapstick type dispenser that smells kinda like vicks but less intense and feels like a wet spot that someone is blowing on but more intense. Like I said, it worked in the beginning of my cycle but it no longer does, I just wanted to pass on something that might help others. You are all great people to live with these headaches and survive the PAIN!!!!![smiley=bomb.gif] We could probably power the world if our endurance could be harnessed into energy. May you all have pain free days. Best wishes, keep the support going. There has to be a cure out there right? [smiley=worried.gif] Peace Nick aka Soursmoke |
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Title: Re: Who is who here to the newcommers Post by brewcrew on Aug 28th, 2006, 2:05pm on 08/02/06 at 17:18:32, prcole18 wrote:
Well, no wonder....you have to dial "9-1-1" for an ambulance. Wait.......oh, you're from......nevermind. ;;D |
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Title: Re: Who is who here to the newcommers Post by pharoah on Aug 30th, 2006, 12:53am HI all...My name is Dale, and i have been a CH sufferer since 1995. I am originally from st. louis, and have just returned here after an 8 year stint in the UK. While in the Uk, in 2000, i was diagnosed episodic CH and prescribed Maxalt, which had little to no effect. Fortunately i usually only get 1 cluster per year July - Sept, with episodes lasting little more than an hour, and in the middle of a monster now. I have been prescribed propanalol (rubbish), and sumitriptan, which i think helped a little, but couldn't really be sure if the beast rested, or i won...either way, it ended eventually. I was in the uk when this cluster began, and was usually about kip 5-7, but since i have come back here, i am 5 times a day @ kip 9+ with at least 1 lasting 2 hours or more, and not really sure what to do...i am not drinking, using the water treatment, and sleeping regularly (no naps), but still getting killers. Unfortunately, as i have just returned to the us, my heatlthcare has not kicked in yet, and cannot get any medical treatment as too expensive. I'm not real sure if there is anything else i can do, but start new job monday, and worried that i won't be able to hide these. Well, thanks for reading , and may you all have pian free nights and days. |
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Title: Re: Who is who here to the newcommers Post by jodirtydoz on Sep 2nd, 2006, 5:16pm ok total new to this started just 7 days ago having fun filled days of pain lol 15 to 20 attacks a day right now but im shure will get threw it i desirve it all lol good to meet ya all and see im not only 1 out there 42 year young and still going hehe havent fig out how to insert my pic so your all lucky so far |
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Title: Re: Who is who here to the newcommers Post by E-Double on Sep 2nd, 2006, 10:51pm on 09/02/06 at 17:16:40, jodirtydoz wrote:
Sorry you are in pain!!! A quick question.......... Has your doctor or you in your own research considered Paroxysmal Hemicrania. It is a cousin of CH, however attacks come in higher frequency yet are shorter in duration. They can be episodic (EPH) or Chronic (CPH) just like Clusters. They are however near 100% responsive to indomethacin. I ask this because if it is PH then relief is truly around the corner for you and fast!!!!! http://www.ninds.nih.gov/disorders/paroxysmal_hemicrania/paroxysmal_hemicrania.htm |
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Title: Re: Who is who here to the newcommers Post by BB on Sep 7th, 2006, 7:00pm Hi everyone, I guess its about time that I introduce myself properly. My name is Annette and I have been registered on this Board since 03rd Aug. I dont have CH, my DH Daniel does. I have been very actively posting here and he hasnt because he has had blurry vision as side effects from the meds and found computer work difficult. Some people may have wondered why I have been so active posting on the Board, even giving advices to people while being "only" a supporter. Well, thats because I am a doctor ( General Practitioner ) and giving medical advice is just 2nd nature to me. :P I admit though that although I diagnosed my DH's condition on day 3 of his first real cycle ( We had only been together 1 month when his cycle started ) and that I have been working with his neurologists on his treatments but my original medical knowledge of CH was " CH is a rare condition, with XYZ symptoms, very difficult to treat, once suspect CH as a diagnosis refer to neurologist urgently" ! We had less than 1 hr teaching at medical school on CH. I even remember the neuro lecturer telling us that CH is so rare that we are unlikely to come across 1 in our entire career! And I managed to marry one LOL ! Well, he is one rare gentleman to start with, I guess ;) Anyway, after spending 5 weeks reading every day on the subject, both here and everywhere else, I have started to become a bit more educated on CH and thought that I may be able to offer some assistance to people in need. I endeavour to embark myself on the journey learning as much as I can about CH both as a medical person as well as a supporter, and will work to bring more awareness of the condition to the Government, the general public as well as the medical profession. I have witnessed first hand how little people, including medical people, knows about CH and how this adversedly affects the level of care/treatment that CH sufferers receive. I practice in Sydney, NSW, Australia and is now a member of the HeadacheAustralia Organisation and I would be most happy to help anyone in Australia regarding CH. You can contact me via email or PM. I would be interested to know if there is any other medical persons on the Board? Please do not hesitate to contact me if you think I may be able to help in any way. If I dont know the answer I will research to find it or bring it up with the neurologists. Painfree wishes to all of us. God bless and Take care. Annette |
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Title: Re: Who is who here to the newcommers Post by chopmyheadoff on Sep 15th, 2006, 3:05am wow - our very own GP - glad to have you on board annette. I know we have spoken before but iv yet to welcome u to the site ;;D ;;D BTW this gal is a real star ladies and gents - top supporter |
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Title: Re: Who is who here to the newcommers Post by BB on Sep 15th, 2006, 4:35am Awwwww... How very sweet of you Chop ! :-* Thank you for welcoming me to the Board. HUGS Annette |
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Title: Re: Who is who here to the newcommers Post by brewcrew on Sep 16th, 2006, 8:40pm on 09/15/06 at 03:05:53, chopmyheadoff wrote:
on 09/15/06 at 04:35:34, BB wrote:
And, it appears, an outstanding human being. ;) Welcome aboard. Bill |
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Title: Re: Who is who here to the newcommers Post by calisto on Sep 19th, 2006, 9:57pm Ive been using this site now for about 2 weeks and i thought it was time i introduced myself!! ;;D Sorry but i havent a clue on how to upload a pic!! My names Simon,im 36 and i live in cannock in staffordshire,england.I live with and am engaged to sonia,an aussie teacher who is the absolute love of my life,my rock and my inspiration. Ive been a sufferer of episodic cluster headaches since i was 20,finally diagnosed around 6 years ago.For ten years i was treated for migraine,sinus headaches and even hayfever of course non of these treatments ever worked.In a fit of desperation my mom wrote to the migraine trust,they sent their monthly magazine and in it were the symptoms for cluster headaches.I couldnt believe they matched mine completely!when they first started they were very mild in comparison to the head twisters i get now - regular kip 10's that can last for 3 hours!Thank god im only episodic - in cycle usually between sept and dec every 2 years. Every cycle the intensity of the ch's increases - im dreading what they'll be like when im in my 60's! Even after dr's agreed i had cluster headaches they wouldnt send me to a neuro,until the doc i see now did.Finally after 12 years i had some recommended treatment from a specialist.This you may think solved my woes - not on your life!!The only thing ive ever been given specifcally to relieve the ch is verapamil (which i cant take now because i take propranolol for something else.)Usually ive weathered the cycle and just taken the pain.Until that is i found this site!!When this cycle started i typed in cluster headaches and found you guys...and it has changed everything!!! I now realise that i do not have to put up with this pain without any pain relief.I have to say a massive heartfelt thank you to helen (LeLimey) the advice she has given me has saved me from so much pain.She has made me see that i dont have to simply put up with it.I now use imigran injections and i have o2 being delivered tomorrow.I cant believe ive gone all these years,suffering this pain without any relief when there was relief to be had!!Im sorry to say that my faith in the medical profession here in the u.k. is not very high.Ive met far more aggresive and unsympathtic doctors than i have compationate ones.Only this week i had a doc at the surgery i use refuse to help ( i only saw him out of desperation)and i was having an attack right in front of him.He even raised his voice to me,usually a very bad idea but he caught me at my lowest!!luckily i managed to see my usual dr later on in the day.He doesnt know that much about the treatment of our complaint but he's at least open to suggestion and understands that just because he doenst know much about it doesnt mean that i dont!!I now go armed with my "cluster bible"- loads of printouts from this site!! This cycle is a bad one,some days im getting as many as 12 hits - bad ones too.If it wasnt for the imigran i think i wouldve buckled,even with it im a little embarrassed to say its starting to get the better of me.Im only getting around one to two hours sleep a night,a hit comes pretty much every hour as soon as a go to sleep until i just give up and stay awake.....its easier.Ive got melatonin coming from the states,hopefully this will help a little and the o2 comes tomorrow,im praying im one of the lucky ones it works for. So thats me.Thanks for taking the time to read this,it helps so much to be able to get this out to people who understand. To helen (LeLimey),chopmyheadoff,and all the others who have given me valuable advice i would otherwise never have received i say thank you from the bottom of my heart.Youve given me the greatest gift you couldve given......relief from the beast and a realisation that i dont just have to take it. Simon. |
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Title: Re: Who is who here to the newcommers Post by Fatcat on Sep 21st, 2006, 7:31am Hi all, I'm not really a newcomer cos I used to visit the old site back in the day, but I haven't been about much until this week. I thought I'd deal with the formalities. I come from Essex, UK. Had ECH from age 18 with annual bouts of around a fortnight. Then I had a remission of 18 months, followed by almost 2 years. That 6 week bout in 1999 was when I was diagnosed, also thanks to the Migraine Action Association in the UK. I had a 3 year remission following the 1999 bout, but it was punctuated with episodes of shadows and phantom attacks. Somewhere between 2002 and 2003, my neuro thinks I went chronic. I've just gone thru an 18 month period where I've had nothing more than the occasional few weeks of shadows. In fact, there have been extended periods where I've been totally pain free, albeit while remaining on a mediocre dose of verapamil. I'd reduced from 600mg to 360mg. But 4 weeks ago, the beast came knocking again, quite by surprise. And now I have attacks breaking thru the verapamil, despite increasing to 560mg. Not sure what all this means. Am I really chronic? Is this latest episode a "bout" of sorts? I don't know. Happy to say HELLO anyway ;;D |
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Title: Re: Who is who here to the newcommers Post by diggercop on Sep 25th, 2006, 3:03pm Thank goodness for this website. I thought I was the only one who was suffering and leaving weddings and other events early due to these headaches. Glad im not alnoe.....there has to be a cure? Right? diggercop/37/Chicagoland :-[ |
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Title: Re: Who is who here to the newcommers Post by Richr8 on Sep 25th, 2006, 3:16pm [quote author=diggercop link=board=knowya;num=1118870900;start=200#210 date=09/25/06 at 15:03:51]Thank goodness for this website. I thought I was the only one who was suffering and leaving weddings and other events early due to these headaches. Glad im not alnoe.....there has to be a cure? Right? diggercop/37/Chicagoland :-[/quote] Welcome! Glad that you found us. You are not alone as you will soon see, but although there are no cures, this site will provide plenty of support and a community that understands what you are going through. Best thing that has happened to me since I got CH was finding this place and all of the knowledgeable caring folks. Dig in, read all that you can, and ask any questions you might have. When you are feeling well enough jump in and support others. Welcome |
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Title: Re: Who is who here to the newcommers Post by Trond on Sep 26th, 2006, 10:28am Hi everybody. It's been a while since my last post, but I'm still regularely visiting the site. I've found it back in 2001, and, thank's to DJ and friend's then got the right diagnose for my headache. I'm 43 years old, married to a wonderful woman and have a 8 year old daughter. I work as a senior engineer at the University of Oslo. I'm an hobby musichian, and work as an studio technician in my own sound studio. I've been a CH for 25years, chronic since 2003. This year the beast are more present than ever, and I haven't had more than 4 PF days since april. They seem to break thru everything. I'm currently using: 1200mg verap, 168mg lithium, 9mg melatonin, O2 and imitrex injections. Hope to get better soon, but are a little bit down at the moment. Partly also because my best friend (4 legs and tail) suddenly and unexpectedly died last week. Okay, enough complaining........... :P I wish you all PF days and night's and will assure all newcommers that this is the best CH site on the internet...ever. Since my good friend Svenn started this thread, and since he calls himself "the mad viking" I will like to sign off with: The SANE Viking ;;D Trond Ps: Didnt figure out how to put in an picture so here's a link to one: http://home.no.net/dsens/people/trond.html |
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Title: Re: Who is who here to the newcommers Post by The mad viking on Sep 26th, 2006, 10:45am on 09/26/06 at 10:28:05, Trond wrote:
http://home.no.net/dsens/bilder/trond.jpg |
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Title: Re: Who is who here to the newcommers Post by Changeling_J on Oct 2nd, 2006, 1:48am Hi, I'm Ellen (a.k.a. El), supporter and daughter of georgej. I was glad to know he found y'all and this site. I think it's helped him a lot. Usually I'll be found in the 'general posts' board, but I may look around here and there at others. |
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Title: Re: Who is who here to the newcommers Post by psuet on Oct 18th, 2006, 2:33pm Hi everyone, I'm Paula. new to the message thing. Hope I am in the right place. I am 35 yr old mother of 4. Have been suffering with ch since summer of 1996. Some times are worse than others. I thought I was one of a very few of sufferers. My episodes are starting to last longer and I can't find any relief, not a lot of doctors diagnose properly. There was only one who put a specific name to this beast, he medicated me so heavily that I was barely moving, but still no relief from the episodes. Others just tell me it is caused by to much stress. My stress levels are the same day in and day out regardless of what time of the year it happens to be, but the episodes always seem to know it is summer time. I cope, uhappily, but cope thinking it will end some time soon. I've lost a good job over it, but that didn't seem to hold any baring on whether the ch came or not they don't care how much money I'm making. It is very hard to explain to people who do not suffer from this. My children try, and my fiancee is very sympathetic. He see's my pain in the middle of the night, my desperate search for comfort, and my episodes of wanting to blow my head off to get rid of the pain. I am going to suggest he visits this site and possibly become a member. I know it wears on him to see me in so much pain and not be able to help me. He travels for his job a lot, gone for 10 days to 2 or more weeks at a time. I am very lonely, in my suffering when he is not here. My friends would probably be really pissed if I called them at 2 am because I need to talk through the pain and turn my focus to some thing else. I have made a few calls, but they either don't answer or are half asleep. I am so glad I found the place. I am currently a student of massage therapy, and deeply interested in psychology. I am trying to find an answer within myself, by using meditation, massage, and guided imagery. I pulls me through the until the pain subsides some times, sometimes it is impossible to focus beyond the pain. |
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Title: Re: Who is who here to the newcommers Post by winshots on Oct 19th, 2006, 8:50am Hello Clusterville... thanks for being here My real name is Ton, I'm male, age 46, and a clusterhead since the early '90s. Some years the beast forgets about me, but this year he remembered and he's back with a vengeance... oh boy this is a bad episode. I am totally new here. All these years I have been denying and ignoring the CH's so frantically that I never even bothered to google for it, even though I knew what it was. Now I can't keep up appearances anymore, it is devastating my life to such an extend that I've finally told my girl-friend and my co-workers. You know, not sleeping, totally drained of energy, looking like a bus has run over me... the news is out there now. It saddens me to the absolute bottom of my heart to see how many people must endure these pains. This brings tears to my eyes, and this time for all the good reasons. Nobody deserves CH, it should not exist, it cannot be imagined by someone who is not a clusterhead (and that's a good thing). Dear Lord please give me the pain of them all, I can't get any worse anyhow so set them free and take me... On the other hand, it is a good feeling to be surrounded by people who know what it is. I can cry, I can yell, I can bang my head against your shoulders... love you all for that. Let's stop eachother from hurting ourselves, right? You got me through last night's dance, thnx for that... I'm sorry, as a newbie I don't know how to post a pic yet but I'll figure that out one of these days. I'll stick around for a while if you don't mind... cu soon and I wish you all a zillion PF days :-) |
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Title: Re: Who is who here to the newcommers Post by ktb on Oct 20th, 2006, 11:47pm Hi- I'm Katie, and I can't figure out how to put in a picture, so here's a smiley face.... ::) Anyway, I'm 40, and discovered this site a few years but never posted. I used it whenever I'm in a cycle and it just started a few days ago. I suffered from migraines since I was 4 and when I was 16 my clusters started. Twice a year. In the last 10 years I'm down to 1 cycle a year that starts mid October and ends on January 7 (like clockwork). So its a good 3 months. Its been 4 years since I've been able to use preventative drugs b/c I have been pregnant and or nursing. I did use imitrex injections quite regularly during my pregnancy, but luckily both my babies (1 & 3) are fine. I've got my fingers crossed that they won't have to suffer like me. I feel very fortunate b/c I was diagnosed w/ch almost right away. A great doctor in Newport Beach (Dr. O'Carroll) knew he was outdone by me and sent me to see the legend himself,,, Dr. Kudrow. I owe him my life and my children. His staff is excellent too (they listen to me cry on the phone when the insurance company won't give me more meds). Hell, they do more then listen, they give me meds until I can get them myself. I didn't mean to write a book. But a little off topic...My insurance company charged me $100 for imitrex injections (5 bottles) when last year I only paid $20. Does that seem right to anyone? All this computer writing is going to trigger a HA. Can anyone tell me how to post a picture? Thank you and good night. k |
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Title: Re: Who is who here to the newcommers Post by keithr1024 on Oct 28th, 2006, 10:10am Hi all My name is keith 33 yrs old and i've been a clusterhead for fifteen years now, still haven't found a 12 step to kick these things. Started getting clusters when i was 19,one year after a car accident that i recived a close head injury diagonised with ch 5 years ago and like many others was previously diagionoised with every thing eles but cluster. had first hit while sneaking a few brews with a buddy had one down then felt a twinge then some moments later KABLOOWEE i thought i was dying no joke. Going to try to keep this short , I'm so glad that i found this site and all you others out there when i first read the stories on the home page i got xtremly choked and yes did bring tears to my eyes.finally somebody who knew exactly what i was going through I tell everyone here is great from the sarcastic sob,s(were entiled to be a bit miffed once and a while) to the pepole who care about us. everyone of you are great thanks for all the info and support...keep on keeping on all you wacky little clusterheads |
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Title: Re: Who is who here to the newcommers Post by G on Nov 4th, 2006, 2:09am Hello All,I am new to this site.I've had cluster headaches since i was about 18 yrs old, I am 35 single,no kids,never been married ,much to my dismay (.I don't know all your lingo ,but ...I get aura's all year long ,mood swings and can't think straight alot of the time ,mayby bipolar? I started getting the intense pain about a month or so ago and the severity and frequency are steadily getting worse,I can recall getting nauseas(spell check :( ) mayby three times in all those years. although in the past week i've been sick over six times.I've been popping blood vessels left and right ,wich really has me concerned ,since they are not that bad yet.I was checking out the pain meter and a ten would mean an emergency visit ,i've already wanted to go twice with only about a eight or nine ,i'm not sure I can take much more,they are lasting about four to five hours a pop now,but not leaving ,they just sort of linger till my next,sort of a pre headache,that can commence at any time,I'm currently not taking any meds,but have taken many over the years ,but to no avail ,oxygen would work sometimes for minor ones,until i would knock over my tank or be forced to take my mask off and go nuts.They will most likely subside in february I'm hoping.Just want to say ...This is a great site and i'm sooo happy I found It !! It brought tears to my eyes just reading the page before i entered,chewing paste haha been there :) although i would not advise smacking yourself in the temple with a phone ( or punching walls....it's hard to put your head in a vise with a broken hand ) my sentence structure was so much better before i took that english course at the local college this summer hehe ,take care all ,GOD IS GOOD !!!sincerly Gary |
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Title: Re: Who is who here to the newcommers Post by AussieBrian on Nov 4th, 2006, 2:29am G'day G, welcome to the nut-hut and don't worry about your English, we're pretty broad minded here. Have you tried the "Cluster Quiz" just over on the left? Give it a go and let us know how you get on. We're certainly not doctors here but we'll help you all we can. Nice to meet you, Brian. |
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Title: Re: Who is who here to the newcommers Post by Charlie on Nov 4th, 2006, 5:20pm Welcome to the madhouse. Here is something to try that worked for me: Dr. Wright’s Circulatory Technique: I am not sure what mechanism is triggered by this but whatever it is, at least indirectly helps kill the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. It can described as a conscious circulatory flexing. Increased circulation will result in a reddening and warming of the hands. Try to think of it as filling your hands with redirected blood. The important and difficult part is that it has to be done without interruption through the pain. Do not give up in frustration. It may not work on the first try. Every now and then it will work almost immediately. I lived for those moments. Try experimenting between attacks. You will find that it gets easier with practice. I was given less than five minutes instruction in the use of method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I have had about a 75% success rate shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain. Perhaps it will help if you think of it as trying to fill the arm as if it is were an empty vessel. I used to try to imagine I was pushing blood away from my head into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This may be similar as it draws some circulation away from the head. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. So long as you do not slack off, this has a chance of working. This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. It gives us a fighting chance. Charlie |
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Title: Re: Who is who here to the newcommers Post by G on Nov 5th, 2006, 12:46am Hi, Thanks for the warm welcome :) ,I took the cluster quiz and I am positive for clusters,except the one question on time,over the last month I would wake up at about the same time every night,but within the last week or so they pretty much come whenever they like,I was up most of the night on and off ,,,but they are with me all day as well,It's pretty funny ...I think they may be passing and will see my left eye still bloodshot and swollen as well as clear then bloodshot within a few minutes -odd-.Sometimes i will get hot flashes before they start ,mayby a shadow effect? when i try to recall my headaches through the years i would always be soaked from head to toe with persperation as well as steady drainage and tearing,I almost never get sick mayby two or three times in ten years or so.I've been lucky so far with the heavy persperation,just a little,but then I've been lucky so far with the severity,my headaches can get pretty intense but over the years I've gotten better at controlling them hahaha, in my own mind ;;D I try to get a breathing rythim going and I guess you can call it a meditative state,wich can be very difficult when I'm exhausted,I deal with the pain as best as i can ,I have not mastered the art of not screaming out when i get frustrated,that's when they are the worst ,when i've lost my control and they take over,after hours of flexing anything and everything to give me a few moments of relief .I become exhausted and lose it,and they become unbearable,add to that hour upon hour of pain,they will leave for a few moments and I sigh in relief only to have them come back more intense,my most difficult thing is dealing with them hour upon hour day after day,I get fatigued and lose control,that's about when i'll start balling and call EMS,they pretty much run my life now I can't hold a job let alone eat regularly,I had planned to finally eat around 2pm today,but I missed my window,when I woke up on the floor at 9:30 I was so relieved just to have shadows,so I ran my butt to the store lol,any ideas on food? as far as quick and easy and good for me ? I'm rambling ...sorry :-/ thanks again ,Gary |
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Title: Re: Who is who here to the newcommers Post by georgej on Nov 5th, 2006, 1:15am Gary, by your description, I'd say you've got 'em without question. But I'm not a doc--you absolutely must get a definitive diagnosis. I think it was the single bloodshot eye and the sweats you describe that really nailed it for me. Try posting a new topic on this board as well, introducing yourself. Most of us read the posts from new people as seperate items, but we don't always check this thread. I think you might get more responses. Welcome. Sorry you have to be here, but you've come to the right place. Best wishes, George |
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Title: Re: Who is who here to the newcommers Post by AussieBrian on Nov 5th, 2006, 1:18am G'day Gary. and nice to see you again. Glad the cluster quiz was a help to you but please understand that it's not the be all and end all and a proffessional diagnosis is terrifically important. Firstly to rule out certain other nasties that can mimic CH and will otherwise be going untreated, and secondly because some of the medications used for CH can be particularly dangerous if you don't have it. Best bet is to find a doctor who has at least some understanding of headaches or ideally arrange to visit a neurologist. Either way, stay with us and keep asking questions because we're ever here to help. |
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Title: Re: Who is who here to the newcommers Post by Asia on Nov 6th, 2006, 11:13pm So I'm not alone. Wow. Sorry this will be long, but please read! I'm Asia, 33, I have a 17 year old son in college... I've had CH since I was about 12. Mother and family thought I was "being dramatic" until later years when they got worse (my mother once asked if I had been using drugs when I was rushed to the ER). I didn't see a neurologist until I was in my 20's, formally diagnosed only about 5 years ago. I have never had "consistent" insurance, except for Medicaid when my son was born, but I was so young, I didn't know how to go about seeing the right doctors. I almost wish I could have the space and your attention span to tell you about some of the things I've gone through, just to get them off my chest, but I won't. I usually get them about 1-3 months out of the year, not always the same months. In each episode, it's on one side only, but can change sides on a "new" episode. After reading many posts here, for the first time I hear people saying that they're going through the same symptoms...even though doctors and my own research painted the CH picture, I've never met anyone with them. NOTE: The only thing I've still never heard being the same is that on the side of my HA, that arm and leg becomes sensitive to pressure sometimes, and it hurts to use them at the worst of the HA. I'm in the longest cycle I've ever been in (4 months). I still don't have insurance, and even to get it now would make it a pre-existing condition. Trying to apply for Medicaid, but I just found out it will take a month (had it in New Orleans where I am from, but that does me no good here.) I just practically begged an ER doc yesterday to give me Prednisone and painkillers, while I continue to try to get regular doc care. I am getting too close to feeling like there's no hope that they will end, even though my mind tells me they will. I've been in restaurant mgmt for years...finally reaching the conclusion after many lost jobs and getting THIS broke that I can't do that work anymore. I don't leave the house, don't see friends, don't do anything but wait for the next headache. I have plans to finally try to start my own business...so that if I do have to live with this, at least I won't have to tell ME that I have to quit. I'm a poet and spoken word artist, with a self published book...when I'm not in the 'Ville, I perform a lot and do community work. I know it's time for my life to change, do things differently, and I'm glad to have found this site. Thank you so much for sharing your lives...you just might be saving mine. |
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Title: Re: Who is who here to the newcommers Post by ferrie on Nov 8th, 2006, 7:20am HiI am Julie, 56 from the UK. I found this forum just now as I was desperate and searching the net for some answers. I hope I find some as I am really down. I have had CH for 6 years but only last year was told that was what I had. I get them every September for about 8 -10 weeks constant and sometimes in the Spring of the year. They never stop in that time, even when I try to sleep. I have tried various treatments but nothing seems to help so far. I dont even go to the doctors now as they just send me away. Edited to add: I also have CFIDS, which doesnt help! I am going to read through this forum to see if I can understand the CH better and then I might not feel so bad........................I am please that I found this place. |
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Title: Re: Who is who here to the newcommers Post by LeLimey on Nov 8th, 2006, 7:45am Hi ferrie, I've posted on your other questions - we'll get you sorted! Helen |
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Title: Re: Who is who here to the newcommers Post by ferrie on Nov 8th, 2006, 7:59am Thanks Helen, no-one around me seems to understand what CH are all about and it makes me feel isolated. |
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Title: Re: Who is who here to the newcommers Post by pattik on Nov 8th, 2006, 8:04am Hi Julie, and welcome. You are definitley NOT alone here. There is more and more evidence of women getting their first onset of CH after the age of 50. There is much to learn on this site, as well as the OUCH site (link on the left). Please ask all the questions you need. PF wishes. patk |
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Title: Re: Who is who here to the newcommers Post by ferrie on Nov 9th, 2006, 3:33pm Thank you Pattik, I have learned more here since yesterday than I have in the past six years, brilliant site! |
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Title: Re: Who is who here to the newcommers Post by aura on Nov 16th, 2006, 10:48pm It was such a releif to find this web site. I have many people in my life who try to suport me through my headaches, but part of me always feels angery having to describe them the pain and know they still do not understand. After reading your postings I broke down in tears; I have finally found a place where people know how i feel. The dread we all have waiting for the next bout. I get eposdic cluster headaches and have been head free for about 2 months now ;;D In these times I try not to really think about them and kind of pretend that I do not get the headaches. Today though I went to see a neurologist who was more excited about what I do for living then about my headaches. He basically told me to take drugs and go home. It made me so angery to be sluffed off again. I started getting these headaches when I was fifteen years old, at which time i was told they were stress headaches ( I am not sure what the doctor thought I was stressed about) so I began to self medicate. After a few more episodes I went to the doctor again and then they started to hand me drugs. I am tired of being handed the new drugs because none work without giving me horrible side effects. No doctor has ever recomended oxgen, but after reading about it on this web site I think that will be my next plan of action. On the lighter side. I am now 24 and mom of a wonderful little girl whom I adore. Ofcourse she is the smartest and prettist child in the world :P I have a wonderful job, and a wonderful boyfriend who worries about to much but can always make me laugh when I need one. My family is great they suport me as much as they can and understand when i need to go hide in the corner for awhile. I want to thank you all for sharing. I do not feel as alone in this battle anymore. |
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Title: Re: Who is who here to the newcommers Post by AussieBrian on Nov 16th, 2006, 10:53pm You're not alone, Aura. Welcome home. |
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Title: Re: Who is who here to the newcommers Post by galaxie500 on Nov 17th, 2006, 11:45pm Howdy all. I just discovered this forum after doing a Google search for CH. I HAD been CH free for the past 10 years, having quit cigarette smoking in 1996. 2 nights ago, I awoke with that dreaded burning behind the left eye pain I thought I was through with. I am also a frequent alcohol (beer)user which has always been a trigger for MOST of my CH episodes in the past. I am 59 years old, male, twice divorced, and currently living alone. I suffered most of my CH episodes from age 25-50. Blood type AB+ I see I have a lot to read in this forum! Best regards to all clusterheads.... |
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Title: Re: Who is who here to the newcommers Post by Tybo on Nov 19th, 2006, 1:50pm Hi all. :) This is my first post,although,i've been lurking for a while. I only seem to come on here when i'm in a cycle. May sound selfish,but when there's no pain,i try to forget about it :( My name is Adrian (Ady). I'm 33. I started with CH at about 20.and was misdiagnosed for about 4 years >:(. Oxygen is my main saviour,but after a bad time last week,i had another visit to the GP last Friday,and managed to get some Imitrex injections to try. But since then i've been pain free,so unable to try them out. Not that i'm complaining of course ;;D. The GP i saw on Friday was the one who i had to convince to prescribe me the oxygen a few years back,and when i told him it works great,he was really shocked because he's never heard of it as a treatment :o Doctors eh...don't you just love em :D I live with my girlfriend of 11 years Sarah,who's great and probably the only one who really knows what i go through. Thanks for listening :) Ady |
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Title: Re: Who is who here to the newcommers Post by Jonny on Nov 19th, 2006, 1:54pm Welcome aboard all, Keep reading, it will only do you good! ;) |
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Title: Re: Who is who here to the newcommers Post by abbiedoll on Nov 27th, 2006, 5:40pm Hello everyone! My name is Abbie, Im 27 years old and have had cluster headaches for about ten years now. I am so happy to have found this website because I have felt so alone for so long! Like no one could possibly understand. I have recently done alot of research regarding cluster headaches, because I seem to get no where with docters. I felt like a hypochondrriac because I am constanly at the urgent care crying..begging them to tell me whats wrong. Most of the time Im passed on, telling me "oh its just your sinus or that I have tension headaches". I often freak myself out, convinced I have a brain tumor pushing behind my eye, until I read up on the symptoms of CH. I hope to converse with you all and get some support as sometimes I feel like these headaches prevent me from living my life to the fullest.[img][/img] |
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Title: Re: Who is who here to the newcommers Post by Linda_Howell on Nov 27th, 2006, 6:46pm Check your pm's Abbie. They are at the top right hand side of the page. Linda |
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Title: Re: Who is who here to the newcommers Post by Miserable_in_MS on Dec 4th, 2006, 6:58pm Hello All ! I am 32 years old, married 7 years and we have a 3 year old little girl. My headaches began back in April of this year. I didn't know what it was other than I prayed for God to take me off this earth if that's what would end my pain! It began one night with a pain in my right cheek which at first I thought was a toothache starting. Then with in minutes the pain was in my eye, around to my ear, and the whole right side of my head and my neck. All I could I could do was lay in the floor and cry. The pain was so intense I even banged my on the floor. I can honestly say that at that moment I even considered suicide. My husband called my parents to come and get our baby and he took me to the hospital. They did some test and told me that it was a migraine, and gave me a shot of Demerol. I made an appointment with my dr and he ran a mri and cat scan and told me that it was cluster headaches. He gave me Imitrex and Depakote. Neither do anything for me!These headaches are killing me! When they start I can't function- at all. All I can do is roll around on the floor and hold my head and scream and cry which scrares my baby to death! Something has to give soon or I'm gonna loose what's left of my mind. The only thing that stops them is going to the E.R. and getting a shot of Demerol, and of coarse that takes hours to get seen! There has to be a better way! If any one has any suggestions for me I would be grateful for any advice offered. |
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Title: Re: Who is who here to the newcommers Post by Richr8 on Dec 4th, 2006, 8:30pm on 12/04/06 at 18:58:22, Miserable_in_MS wrote:
Unfortunately, there are no known cures for CH. You can find a certain levels of relief by finding a treatment tha tworks for you. Please read all that you can here: http://www.brightok.net/~mnjday/chtherapy.pdf and share with your Neuro. If you don't have one, get one that is willing to listen and work with you in developing a coping plan. Also, read all of the information on the left panel regarding Oxygen. It works wonders for many of us. Feel free to ask questions regarding any treatment over on the meds or general boards because chances are xomeone here has tried it. |
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Title: Re: Who is who here to the newcommers Post by war_eaglekd on Dec 11th, 2006, 12:04pm Hi. I'm Karen from Auburn, AL. My headaches absolutely will NOT keep me from watching the Auburn Tigers play! War Eagle. kd |
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Title: Re: Who is who here to the newcommers Post by sivik on Dec 12th, 2006, 11:54am 24 yo male, first diagnosed last year, having my second cycle right now. Seems to be a Winter thing. So glad I found this website. Taking Verapamil and Ultram...not doing too much for me. Any other suggestions? I've read about oxygen as being helpful, but didn't know of any other medications as well. Imitrex seemed to work the best, but since you can only take a certain amount in a specified period of time it only lasts about a week. Suggestions? |
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Title: Re: Who is who here to the newcommers Post by taraann on Dec 20th, 2006, 3:48pm on 11/19/06 at 13:54:46, Jonny wrote:
Yup definately! I've been a member here since June 23rd, 2003 and I still read so much more than I post. Oh I'm Tara, 29yrs old married to Sam for 8 yrs and we have two kids... Sammie, he is 6yrs and Antoinette, she is 5 yrs old. I started with Ch a yr or so before Sammie was born and was dx in 2001. Was episodic until a couple yrs ago when my cycle just never ended. I'm very med resistant and have tried many, many, many meds so mostly I go it medfree (for me so far it's better than crappy side affects with no good result) about the only thing that almost consistantly works for me are steroid tapers and now my teeth are suffering due to so many of those. http://myspace-189.vo.llnwd.net/00876/98/19/876359189_l.jpg Welcome to CH.com and I hope you find help, support, understanding and friendship here. |
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Title: SIVIKRe: Who is who here to the newcommers Post by noranate on Dec 21st, 2006, 12:16am Sivik unrortunately with the Imitrex you have to be very selective as to wich two headaches you choose to use it for in a 24 hour period due to the risk of overdosing on it. Although if you were to take a third in under the 24 hour spacing say around 20 hours I have noticed no real major problems but that is how my body reacts. I have found that Verapamil and Neurontin seem to work fairly well for me when taken together so you might want to question your doctor about that. And as far as the oxygen goes that is supposed to be the best thing we all can do for these damn things but again it can work for some and not others. If Presribed you should push for 15 lpm and be sure to get a re breather mask or it will not work as well. And be sure to keep your self hydrated as it tends to dry your nostrils and throat out. If you are experiencing problems with anxiety or depression due to all this my docto put me on Lexapro which is working weel for me and i also tried Wellbutrin which had an added side effect of helping me to quit smoking. I wish you luck man and I hope you found an understandind doctor. Take it easy and just remember the pain eventually goes away. Happy Holidays. Peter |
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Title: Re: Who is who here to the newcommers Post by Butch on Dec 21st, 2006, 3:16am I just wanted to say hello this is my first time here i just found this site the other day and was able to learn alot of whats been going on with me, I am a 911 dispatcher have been for 10 1/2 years, Volunteer Firefighter and Instructor. i was also an EMT. I am married have been for 20 years, one son and three daughters. this is my second time of having CH, they came back last october. |
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Title: Re: Who is who here to the newcommers Post by Butch on Dec 22nd, 2006, 4:55am Well yesturday morning after i let that small note here about me I had got off from work and went home, right now I work nights 7pm to 7am, after i got hoome I stayed awake for a little while then I got a vist again for the beast this time it was just to let me know he was still around. I am tring to learn as much as I can about this I thought it was all over the last time I was getting all the headaches, I was headache free for so long I would like to know what iI did to keep them away but maybe I will never know. |
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Title: Re: Who is who here to the newcommers Post by E-Double on Dec 22nd, 2006, 8:13am Hi there and welcome to our family!!! Much to learn and share! PF wishes to you all! E |
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Title: Re: Who is who here to the newcommers Post by Pfunk on Dec 24th, 2006, 1:02am Hello all. I guess since I'm back on as a newbie now I'll start over by trying to post a picture here with the message. Most of you know my situation as so amny of you kindly replied when I introduced myself last year. So her goes a shot at posting a picture within this post; if it doesn't work than I'll keep trying untill I get it: Hell! Ican't figure it out here the cite if youwant to see a picture:http://i44.photobucket.com/albums/f34/pfunk15/leepat-1.jpg Pfunk |
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Title: Re: Who is who here to the newcommers Post by E-Double on Dec 24th, 2006, 8:06am Coming to you directly from the Mothership Top of the Chocolate Milky Way, 500,000 kilowatts of P.Funk-power. http://i44.photobucket.com/albums/f34/pfunk15/leepat-1.jpg Whattup brother and welcome back ;) |
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Title: Re: Who is who here to the newcommers Post by taraann on Dec 27th, 2006, 7:19am I must add.... I remember feeling that "oh wow I'm NOT alone!" feeling. Newbies ain't it great to know you truly aren't alone. I think that's why I cried so much when I first found this site and read, read, read, for days! It's amazing to the point of almost being overwhelming (in a good way) (hey as for pics, how come even though I use a program to make mine smaller for a website they still look huge??) |
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Title: Re: Who is who here to the newcommers Post by genss on Dec 28th, 2006, 1:54pm Hello everyone. I've been coming on here for about 5 years now. I have to admit, I only come on here when I am going through an episode. I'm trying to change that now, though. I've had CH since my late teens. I'm 28 now. I use amiltryptlin (sic) and verapimil. They are the only things that work for me aside from Prednisone. But prednisone tore up my joints, so I don't take it anymore. This site was a lifesaver for me as well. No one understands like ya'll do! And no one is as informative either! |
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Title: Re: Who is who here to the newcommers Post by TonyG1 on Dec 28th, 2006, 5:35pm Not really a newcomer, found this site during my last cycle in 2004 / 2005 -- Back in cycle again but do visit the site on occasion when I'm not in the jaws of the beast .... I'm 41 and have had CH since around 21 or so... Verap and triptans are my friend (or did I mean fiend... ) :) Wishing everyone PFDANs !! |
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Title: Re: Who is who here to the newcommers Post by jeffr on Jan 10th, 2007, 5:39pm hi everyone my name is jeff . im not too computer savy but im learning . i have had clusters since 2001. '06 was my first full year with out pain. doc put me on verapimil 360 mg . 13 months later they're back worse than ever . my gp set me up with a neurologist 24 of this month any help with determining if this doc. is for me what do you look for, guestions i can ask. im sure after some time using this site with all of you communicating like this will be easier. my wife is robinr on supporters side if you see her say hi thanks so much for being here. |
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Title: Re: Who is who here to the newcommers Post by Fr._Joe on Jan 11th, 2007, 2:06pm Hi everyone! I am 45 today. Have been having these things since I was 17 or so. Trust me, I don't think you want t see a picture of me. :) Anyway, I have been lurking here for quite some time, but decided to register today. I am married with three sons BTW. and live in NJ, USA. |
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Title: Re: Who is who here to the newcommers Post by robinr on Jan 11th, 2007, 4:29pm Hi everyone. This is robinr, jeffr's wife. I just wanted to say hello since he introduced me in his first message. It's been hard this last few weeks. Jeff's headaches were GONE until our MD here lowered his dosage, and then BANG, they have come back with fangs. BIG UGLY FANGS. We're glad we've found this site and hope to get some insight into what questions to ask when Jeff goes to the neurologist later this month. He's gone from zero headaches for over a year to two or three every night. And I feel so helpless when they come. It's hard to not be able to help someone you love when they are hurting so badly. The helplessness I feel is just overwhelming. Sometimes I just leave the room because I know there is nothing I can do. Anyway, we do appreciate you being here, and I hope our posts don't get lost in this very long thread. We need your help. Thanks, Robin (and Jeff) |
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Title: Re: Who is who here to the newcommers Post by Opus on Jan 22nd, 2007, 8:36pm Posting for Lisa AKA swimchica623 http://www.pbase.com/pjbgravely/image/73426419.jpg http://www.pbase.com/pjbgravely/image/73426450.jpg Lisa says HI! [smiley=wave.gif] |
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Title: Re: Who is who here to the newcommers Post by taraann on Jan 22nd, 2007, 9:01pm #1 paul thanks for putting a face to the s/n............nice to put a face to the name Lisa.......u sure are a cutie hun!!!! |
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Title: Re: Who is who here to the newcommers Post by brewcrew on Jan 23rd, 2007, 4:59pm I don't know, Lisa - Your eyebrows look pretty symmetrical to me.... on 01/22/07 at 20:36:10, Opus wrote:
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Title: Re: Who is who here to the newcommers Post by barrybhoy on Jan 27th, 2007, 3:18am Y'ello! My name is Barry; I'm from Edinburgh, in Scotland. Believe it or not, I only discovered today - after ten years - that I have been suffering from CH. What a relief it was to come across this site. For the past decade my CH has frustrated and upset a lot of people I've lived and/ or had relationships with. Why? Because they, like me, had no idea what was wrong with me. At times, I thought I had some form of brain tumour, and even describing my symptoms to Doctors didn't help. "Take some painkillers," they'd say. "But they don't work," I'd reply back. Now I feel a little bit better knowing exactly what it is I have and, that, there are other people out there (and hopefully nearby in the UK) willing to share their experiences and advice on combating this debiltating problem. Over the years, the strength of my CH has forced me out of work, caused many a problem at social occasions, and resulted in whole days of my life gone missing. Anyway, enough bleating. Hello to everyone on the board! Cheers, Barry |
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Title: Re: Who is who here to the newcommers Post by LeLimey on Jan 27th, 2007, 5:09am Hello Barry and welcome! I'm sorry that you have HAD to find us but I'm glad you have. You might want to have a look at OUCH UK as well as they have alot of sufferer's fairly close by to you. Edinburgh, Perth and Glasgow have a few friends I can think of off the top of my head and they're pretty good at getting together once in a while too :) I know some things are different within the NHS in Scotland and England so they'll be alot of help with any help and advice you need too. What meds are you using? Have you ever tried O2? Lets see if we can't do something positivie to help you! Regards Helen |
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Title: Re: Who is who here to the newcommers Post by LeLimey on Jan 27th, 2007, 5:14am Hello Genss, Jeff Robin and Joe and welcome! I'm sorry I missed seeing you get here before but I'm very glad you found us and I hope we can be of help to you. If you'd like to post a thread of your own on the board with your experiences to date and what meds you've tried etc we can all pull together to see if we can come up with anything to help you. Robin you are welcome to post anywhere but please bear in mind we do have a supporters board especially for any help YOU need. Its a hard job being a supporter and we value our supporters higher than rubies here so a big thank you from me too for all you do. Please don't feel you can only post there though, you're welcome EVERYWHERE!! Tony I remember you, welcome back hon how are you doing? Take care everyone Helen |
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Title: Re: Who is who here to the newcommers Post by barrybhoy on Jan 27th, 2007, 3:42pm Hi Helen, Many thanks for the warm welcome - I'll be sure to take a look at Ouch! for those close to my home. Having read your own situation with CH I must confess I feel like one of the more lucky ones who don't have it as severe. It's such a cruel, upsetting illness. I can't believe there is still no known cure for it. Am also a journalist and will be writing a feature on the subject soon. Maybe you know someone in the Scottish/ Edinburgh area that might want to take part in it? As for O2 - where could I access/ purchase it? I've tried looking, asking, but get the usual glazed look on peoples' faces. Again, thanks for getting back to me. B |
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Title: Re: Who is who here to the newcommers Post by duckie on Jan 29th, 2007, 6:08am Hi everyone, I've been diagnosed since 2001 with episodic CH combined with tension HA. Looking back though I think I may have had CH since I was about 6 with breaks for a few years in between. Since 2001 I haven't had one true PF day, however haven't had a full CH cycle since 2002. I have the awful feeling that I'm in for another cycle, sitting here with a kip 6 and increasing. Been back to the Neuro and trying Inderal, been on it for about a week and a bit and it doesn't seem to be doing much. Got given Imigran as an abortive but in tablet form and seems like it takes too long to work. Anyone have the same problem? I'm glad I've found this site and I hope to get to know you all. duckie (aka Lii) |
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Title: Re: Who is who here to the newcommers Post by AussieBrian on Jan 29th, 2007, 9:10pm G'day, Ducks, and sorry you have to be here, but if you're a CHead it's the best place in the world. Firstly, don't be surprised that the Immigran isn't effective as the tablets work far too slowly, but it's also available as a nasal spray (pretty good) and as an injection which is highly reccommended by many. Shame about the cost. Probably the most used and successful abortive is oxygen - not that expensive and remarkable few side-effects. Check the button over on the left and also have a look at http://mushys.com/kiwi which was put together by Barry from Karatha along with Mr. Happy and outlines the Oztralyan side of things. Otherwise, stay well and don't let anyone tell you it's all in your head. Cheers and beers, Brian up north. |
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Title: Re: Who is who here to the newcommers Post by duckie on Jan 30th, 2007, 2:37am Thanks mate, I'll look into the Oxygen.... anything that works!!! Duckie |
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Title: Re: Who is who here to the newcommers Post by Turts on Jan 30th, 2007, 5:36pm [img][/img] GDay My name is Turts, im 31yrs of age and have been a diagnosed Cher since I was 18yrs old, suffered since I was 16yrs. Legally single by have a beautiful girlfriend and supporter by my side. Just waiting for her to make an honest man of me. ;;D episodic sufferer, and sorry to say have also been an episodic CH.com er, hoping to get my own computer so that I make Ch.com an honest partner aswell. On verapmil and O2. Tried all the rest and didnt enjoy the side effects. As Woobie can vouch, a life ambition has become to join the family at Davcon and other Convention. Wishing you all PFDAN. Turts P.S. This is the first time I have added an image (shortcutted from pahlow website. Might need some help to minimse the picture so I dont scare people to death and let them get away from the beast! |
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Title: Re: Who is who here to the newcommers Post by Joew on Feb 19th, 2007, 9:34am Hey all, I'm Joe and I live in London, England. I've been having headaches since Monday last week (12th Feb 2007). I went to the doctors on Wednesday and they said that I might have Cluster Headaches. It's now been a week exactly and they haven't gone away in fact they have got a bit worse. Went to the doctors today and they gave me Sumatriptan nasal spray which seems to have taken the edge off it. I'm still not sure if I have been properly diagnosed yet and am praying that I don't have CH. I'm also frightened as hell that they are going to get worse. I think I might be a 5 on the KIP scale but that went up to 6 today. Fortunately I only get them in the day so far and have been able to sleep without interruption which is a small mercy. So more about me and less about CH. I am 25, single, studying to be a Barrister and thankfully nearly finished, concentrating at the moment is near impossible. Here is a picture of me on holiday and before the start of this cycle (if that is what it is): http://i117.photobucket.com/albums/o42/joewengraf/DSC02137.jpg I guess you'll be hearing more from me if my doctor's diagnosis is correct but if not (which I hope) and in any case, may I wish pain free days to everyone. Joe xXx |
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Title: Re: Who is who here to the newcommers Post by LeeS on Feb 23rd, 2007, 12:13pm Hi Joe - pleased to meet you. I would strongly recommend getting a referral to a neurologist to confirm your diagnosis. Have you completed the cluster quiz here on the left? Please feel free to IM me if you'd like any details of treatment etc., in the UK (I'm just north of London btw) or just fire away with any questions or concerns you may have here on the boards. -Lee (who's keeping an eye out for limey-bird :P) |
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Title: Re: Who is who here to the newcommers Post by chrisw on Mar 1st, 2007, 1:39pm hi everyone, Im christine, 37 yrs old, live in new jersey. I havent been here in a long time, because stupid me actually thought that I was cured. I started verapamil during my last ch bout, almost two years ago. It seemedto work so good. clusters cleared up, and i stayed on a very mild dose ever since then. I thought I would never get them again. Well they are back with a vengence and the verapamil isnt working like it did before, and Im on too many meds to list. Nobody else would ever understand except another cluster head. Sometimes it would be nice to talk to someone who knows what we go through. I have never met another person with this problem. I have a great family, three kids and a great husband who goes through hell with my problem as well. Now I have the underlying pain that never goes away, like leftover damage or somehting. Thank god I finally found a doctor who knows what she is doing. I will go and put a smile on and stop complaining because I think everyone around me is sick of hearing that my head hurts. Maybe somebody on this site can understand when nobody else can Chrisw |
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Title: Re: Who is who here to the newcommers Post by seasonalboomer on Mar 1st, 2007, 1:59pm chris, welcome back, sorry for the reason. as your present preventative is not working it may be worth considering a solid abortive approach so that the hits that do come can be managed better. 1.) have you tried O2? If not ask your doc to get you a prescription ofr home oxygen, and very importantly, 10-15 lpm regulator volume capability, and a NON-rebreather mask. 2.) have you tried injectable imitrex? it's pretty darn good for many of us. Kills a hit in less than 10 minutes -- 3.) some folks have success attacking a hit with Red Bull Energy Drink or strong coffee if we can get to it in the formative moments. If you can get some relief with the above abortives you can then get some rest and feel better about your world when you are in cycle. Think about it, if you could effectively kill 4 of 5 cluster hits in less than 10 minutes wouldn't your quality of life improve? Scott |
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Title: Re: Who is who here to the newcommers Post by chrisw on Mar 1st, 2007, 3:10pm Scott, Thanx for the help, Ive got a tank of O2, and a cabinet full of Imitrex shots. I try not to us e them unless im in a full blown 10 scale ha. They work really good, but I just feel like crap all the time now. I cant take imitrex all day every day I swear, one day these things will be the death of me. either i will have a heart attack from all the meds. or a stroke or suicide. im not having full blown pain its just like im always on the verge. how are you coping? Chris |
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Title: Re: Who is who here to the newcommers Post by hikerguy on Mar 1st, 2007, 4:22pm Hello,everyone I'm Chris from Syracuse NY ....(go orange) I have been episodic for 14 yrs |
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Title: Re: Who is who here to the newcommers Post by thebbz on Mar 1st, 2007, 9:08pm Hikerguy, Welcome and post a houdy in the getting to know you section. There's a few from your area here. Stick around jb Go Blue!! |
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Title: Re: Who is who here to the newcommers Post by rossybabe on Mar 1st, 2007, 11:00pm Hello ! My name is Rosa, I am from Mexico, I have been a CH since I was 12, I am 35 now so it's like being with me forever, started chronic, then episodic, while in college back to chronic and then episodic again...right now I am in the crest of the season..hopefully one more month to go and then some relief ::).. I am happily married with a CH free man luckily (irish american) and have a beautiful 5 years old little daughter (my precious princess) who is the main reason for me looking for support and company on my horrendous days with the monster... I found the site and read some of the posts..feels good not to be alone...even when we are talking about something so terrible as CH :( some of my relatives suffer from migraines but CH just me..thanks GOD..I would not wish for them to have one single one of mine...ever! I will be around for sure, hope to make some friends.. Wish you all lots and lots of PF days !!! |
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Title: Re: Who is who here to the newcommers Post by chrisw on Mar 2nd, 2007, 9:40am Rosa, I am so sorry that you are going through this. I feel for you, and I understand because I am feeling the same pain. Where in Mexico do youlive? I just got back from a cruise, we had one day in Cozumel, and I thought that it was the most beautiful, fun place ever. I want to go back soooo badly. the people there were so nice and friendly, the beaches were beautiful. The weather was great, while the weather here is freezing and wet. Cant wait until spring. Chris w |
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Title: Re: Who is who here to the newcommers Post by georgej on Mar 2nd, 2007, 9:58am on 03/01/07 at 16:22:22, hikerguy wrote:
Welcome to the board, Chris. It was a pleasure talking to you in Chat the other night. Hope things are going a bit better for you, and looking forward to hearing more from you. Best wishes, George |
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Title: Re: Who is who here to the newcommers Post by rossybabe on Mar 2nd, 2007, 11:09am Hi Chris!! I am from Veracruz State but I live in Houston, TX. Yes I have been in Cozumel too and it is a beautiful place! I have been planning a trip with my husband and little girl but to another beach named Puerto Carrillo, QR is in the same state and is less known but no less beautiful and a lot cheaper too! hope you get the chance to go there some day! talking back about the monster...I did not get one last night Thanks GOD! ;;D I needed some rest...bad! now is just a matter to wait if this starts to go away soon, this is supposed to be my last month with CH and they normally start spacing ...HOpe so!! I need to be rested for my daughter B-day party next weekend!! |
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Title: Re: Who is who here to the newcommers Post by MathenyMan on Mar 2nd, 2007, 4:47pm Hello guys..I'm relatively new here. My name is Adam Matheny. I live in Sacramento, California. I've had clusters for about 14 years now.I'm episodic, and in cycle right now. I started with em pretty young, which sucks, cause proper dosages weren't available to me until recently. I, however, now am on Verapamil, prednisone, I have some lidocaine, imitrex shots(all out now), and plenty of oxygen. The coctail now, is usually good enough, :-/ I guess, most of the time. But that other 40% of the time is hell. Somehow my cocktail doesn't work on certain days. I dont know if im eating a trigger, smelling a trigger or what. I thought I was pretty careful. Anyway I dont take many pictures of myself, nor do I let others take them of me, due to photogenic akwardness. So I got the only 2 pictures I had. Im the guy in both pictures. The adult girls are my cousins, the little girl is my neice(and our guitars). lol, I wish I had a picture as impressive as the texas lady with the sweet bass, but I guess that'll have to wait until this summer. Anyway PF wishes to all. http://i13.photobucket.com/albums/a261/Mathenyman/DSC00951.jpg http://i13.photobucket.com/albums/a261/Mathenyman/DSC00807.jpg P.S. All are welcome to contact me. I love meeting new people, ESP clusterheads, it was just this week I found you all. Before that I was alone. So, hopefully I'll be hearing from tons of new people soon. Perhaps start a group a little closer to home. See yall later! |
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Title: Re: Who is who here to the newcommers Post by E-Double on Mar 2nd, 2007, 7:34pm Right on Adam! Always great to put a face to a name. Wishing you the best and a quick cycle. |
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Title: Re: Who is who here to the newcommers Post by Linda_Howell on Mar 2nd, 2007, 7:51pm Hi Adam, I didn't know you lived in Sac. I live in Redding and we have a Calif. chapter of OUCH here if you'd like to come visit us. http://www.calouch.org/cgi-bin/yabb2/YaBB.pl Linda |
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Title: Re: Who is who here to the newcommers Post by mbcoon on Mar 6th, 2007, 12:27am Hi, I'm Bryant and I was diagnosed with CH today. This is my first round (2 weeks in) and have been getting ch's once a night around 1 am. I'm 21 years old and am a senior in college. I went to the university health center today and the doctor got it right off the bat. She prescribed imitrex nasal spray and verapamil 80 mg x 2 a day. I was relieved to finally know what had been causing these attacks (just glad it wasn't a tumor or something), but when I got to the pharmacy that relief left me. I have insurance but apparantly they don't cover the nasal spray. It makes me think of one of those master card commercials. Verapamil =$4, Imitrex=$217, Relief=Priceless. The only thing is, if it works it will definitely be worth it, but I simply can't afford it. I'm not eligible for ppa or any other programs I could find. My doctor mentioned 02 but said she didn't want to prescribe it to someone so young. My question is what is the difference in price ($/use) and should I just flat out tell her that I want to try oxygen? I don't want to sound like I'm telling her how to do her job. Also, do any of you have any advise for someone working full time and taking a full load of classes? And, during a cycle what kind of sleep deprevation do you have even if you have the beast "under control"? Thanks, I really appreciate it. Bryant |
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Title: Re: Who is who here to the newcommers Post by Rosybabe on Mar 6th, 2007, 3:26pm Hi Bryant! I am so sorry you get to be one of us!! I do not wish this pain to anyone!!!.. I tried O2 but it did not work for me, I started using it when I was 18 so I do not see what the problem is with you using it at your age, sometimes works, sometimes does not... imitrex do work but yeah it is pricey!! what about Cafergot? it works for me. Maybe your Doctor can give you alternatives less expensive or at least covered by your insurance... Some people here say that RedBull during the day time works wonders!! I hope you are avoiding anything that may trigger your CH..beer, smoke, sausage, etc...stay away from them..they like to call the beast over!! You can try with cold packs on your head when you get the pain and try to sleep whenever you can... Hope the beast give you some days to recover..you will need them.. I used to have one or two episodes daily while in college and yeah that was horrible!! Wish you the best!! |
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Title: Re: Who is who here to the newcommers Post by ndshrubs on Mar 14th, 2007, 8:24pm Scott's Profile Hi everyone, I'm kind of new to the board. I could swear I had a username and password back in the old days, but that was several laptops ago. I'm from Chicago but travel frequently, work in Finance, not married. I've had allergy headaches all my life, cluster headaches starting in February of 2000. I'm fairly sure that it was triggered by the CPA exam; something about pension accounting probably set me over the edge. Now, I'm one of the seasonal/episodic CH sufferers, almost always having a cycle in Jan/Feb and Sep/Oct. I've pretty much run the gamut of headache remedies including: Maxalt (regular and MLT) Medrol/Prednisone Topamax Immitrex (pill only) Relpax Zomig Amerge Intranasal Lidocaine Ice/Heat Showers Even done sleep studies looking for apnea Currently, I rely on the trusty cocktail of 3 advil, Axert, and Oxygen, with rocking/pacing or quiet "classical" music as socially acceptable. Usually, I'm fine, if a little loopy, within 30 minutes of taking the cocktail. Drug free episodes usually last 4 hours for me and involve dizziness, intense pain, eye watering, and feeling-overheated. Oddly enough, when I ran a marathon, I didn't get a headache for a year. Unfortunately, knee problems keep me from distance running... though perhaps that's something for the rest of you. I actually enjoy reading research on CH and hope someday I'll find something that works 100% of the time for me. Recently, I saw a press release about a non-invasive "cooling" device used in stroke patients. I've been sending them e-mails suggesting they at least consider the impact on cluster headache patients. No response yet. It's called "benechill" and can be found using your favorite search engine. Anywho, I look forward to continuing to learn about CH and wish you all pain free days ahead. -Scott |
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Title: Re: Who is who here to the newcommers Post by thebbz on Mar 15th, 2007, 10:32am Welcome back Scott, you like research? Check out the calouch website, and these,,clusterbusters.com, OUCH. There are many. Good luck and see ya around. jb |
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Title: Re: Who is who here to the newcommers Post by blmiller84 on Mar 21st, 2007, 1:42pm I suppose I'll start with a post here... My name is Barbara and I'm 22 y/o. I started getting abdominal migraines when I was 11. They eventually moved up to my head and 2 or 3 years ago I was informed that they are actually cluster headaches, not migraines. Lucky me. ;) I've been on various preventatives (anti-depressants and anti-seizure meds), all which have made me sick. I've tried Imitrex and I got all the side effects and none of the benefits. It was horrid. So now I try to avoid any meds because I'm afriad they will make me sick. I'd rather have a horrible headache than go through another CT Scan! :P I had 2 of them within 3 months last year (ugh... barium... i can't drink anything that has that berry taste ever again...) I'm currently starting another cycle of headaches, they start randomly. I think this one was caused by the weather change lately... And when I'm able to stay still, all that I can really focus on is reading about my headaches... which is how I found this site. I guess reading about them just makes me feel better knowing I'm not the only one with this pain that hates me... |
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Title: Re: Who is who here to the newcommers Post by thebbz on Mar 21st, 2007, 3:25pm Welcome and keep reading bmiller. The more you know the better fighter you will be. If you have CH this is the place to be. Get settled in and start a thread to introduce yourself. all the best jb |
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Title: Re: Who is who here to the newcommers Post by pieface_49 on Mar 24th, 2007, 2:18pm Hello Y'all. I am a newcomer, my name is Donnie, 49yo, live in Barling, AR. After 4 years of misdiagnosis, such as Trigeminal Neuralgia, countless Doctor's and Specialists I believe I have found the answer. CH came about by reading "Trigeminal Neuralgia, Fighting Back" and by talking with a Health Coach provided by my health insurer. On the opening page of this site I was in tears as I read my story. My journey with CH began in 1993, age 33. At that time I was rushed to an emergency room a couple times. The mysterious ailment disappeared, not to surface for another 10 years. I must state the diagnosis I have at this point in time is a self diagnosis. I went to the Doctors this morning armed with the newly found information from this site. The Doctor prescribed Indomethacin which I suspect may not be the best medicine for my affliction. I talked to the pharmacist about the medication prescribed and am going to try it. I will try anything to end my hell. My thoughts during an attack have been drilling a hole in my face, cutting out what I think is the affected area or suicide. I have been given pain pills (Loricet Plus) which are useless and have thought alcohol works quicker, one shot, one beer. Wow! Have I been wrong. 2 weeks ago after awakening at midnight, I chose the alcohol route after a half hour of pain. I knew I was in for a long one and needed help NOW. The pain got worse and by 1:30am I was dialing 911. I live by myself and 911 seemed like my only recourse. The friggin Emergency was a waste of money and time. They let me sit cowered in a corner for 3 hours before even acknowledging I was there. By the time I got to see the Doctor I could open my right eye and see. The pain is so severe, I go into a strange stage where I the outside world is kinda oblivious to me. Only someone suffering with what I have could understand. The Doctors certainly have not. I could easily write a book on what I have been through. Having one tooth pulled, having another pulled and finally having all my top teeth pulled. I have read books written by others in hopes of getting a correct diagnosis. Nothing I have been prescribed has helped. I can only pray the Indomethacin works. I took the survey online here and answered ALL the questions like a CH suffer would. What a revelation! Why has the Dentist, Gum specialist, Neuralogist's and Doctors not been able to diagnose my condition is beyond me. My CH is episodic and I am slightly past 6 weeks of daily pain and I believe on the downward spiral. I know when I am going to have a night from hell. The smaller attacks I experience earlier on in the day will normally lead to a 4-5 hour attack in the evening. Like clockwork it comes. Normally right before I am ready for bed or after I have slept for an hour or so. I have the false positive attacks where the pain may continue from 5-20 minutes and just as suddenly as it came, it will go away. My worst attack was 15 hours in 2003. With this episode, there have been about 6 of the severe (4-5 hour) attacks. I will stop here, but like I stated earlier, I could write a book about this evil illness. After visiting the Doctor's office this morning with my revelation, I once again walked away a little dismayed. I would have thought he would have had a blood test taken, but he did not. Time will tell if it is truly CH. What brought me here was Sphenopalatine Neuralgia, another self diagnosis after reading about the illness. The symptoms of Sphenopalatine Neuralgia are very close to describing what I have. I am looking for help and guidance and through time, hopefully I can help someone else. Thank you for allowing me to participate. Donnie |
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Title: Re: Who is who here to the newcommers Post by ClusterChuck on Mar 24th, 2007, 4:22pm Donnie, I hope you find out that you don't belong here. But if you do, this is the best place to be. Congratulations in the first step, self diagnosis. Now you need to get it confirmed. Have them give you a CAT scan, MRI, and maybe even an MRA, to rule out any other possibilities. There is no definitive test to show CH. The tests are to rule out other problems that could cause like symptoms. One of the things to push for, if you do have CH, is oxygen. It is one of the cheapest, safest, and most successful abortives out there. BUT, it must be used properly to work. You need a regulator that goes up to 15 LPM (litre per minute), and a non-rebreathing mask, preferably a clustermasx. The clustermasx is new, and if you ask your doctor, or oxygen supplier about it, most likely they will never have heard of it. It is designed and sold by a fellow clusterhead in jolly ole England, and any of us that have tried it, swear by it. It can be purchased, for $25.00 USD from www.clustermasx.com Other than the clustermasx, your oxygen supplier can get you everything you need. Just make sure they set you up with a regulator that goes up to 15 LPM, and don't let them tell you that they don't make them that go that high, nor that you don't need that much. Your doctor will need to give you a prescription for it. Welcome aboard, and feel free to ask any questions that you may have. With all the people here, we know more than most medical professionals know about this curse. Chuck |
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Title: Re: Who is who here to the newcommers Post by clusterachetarget on Mar 24th, 2007, 8:02pm Hello everyone, I’m Maxim. I was diagnosed with migraine at age 12. I thought I knew everything about painful headaches. I guess I didn’t. I’m 30 now. Last January, I started having the most agonizing headaches that I’ve ever felt. Symptoms included swollen eye, redness, and severe tearing of left eye. I felt as though my eye was being perforated by a dagger and was about to explode. My left nasal passage was congested, I had runny nose, and pain in the left side of my nose. I also had pain in the neck, teeth and gums. In some occasions I would feel slightly nauseous. I could feel the pain all over the left side of my face. I noticed that the pain started after napping. Then, I stopped taking naps for no reason. Afterwards, I noticed that the pain would start at around 8:00 pm, and it would come back the next day at the same time, and so on. Some other times, the pain would wake me up from my sleep. I thought I had a sinus infection because my left nasal passage was brutally congested and I was feeling what I thought was pressure on the left side of my forehead and temple. By that time I didn’t know anything about cluster headaches. After two horrendous weeks, I started suspecting that I had some type of brain tumor and was forced to go to the ER. I was there for about 8 hours and that day I had several attacks. They didn’t give me anything for the pain at all, not even an aspirin. Not that an aspirin would have helped me, but it’s the principle that counts. In my desperate attempt to seek help, I was expecting some type of compassion on behalf of the ER doctor, but nothing! The doctor mentioned that she didn’t want to prescribe anything for the pain because she didn’t want to interfere: in case my regular doctor would recommend some other medication. The ER doctor determined that I had a slight infection in my sinuses and gave me a recipe for pills to prevent nausea. She also advised me to contact ASAP my regular doctor. I still have the recipe, I mean, nausea? That’s ridiculous. I had blood work done, a CAT scan, etc, and was sent home. No brain tumor, nothing wrong in blood test results thanks god. Four days later or so, I visited my regular doctor and told her everything about it. She said that it sounded like a case of “Cluster Head.” Nonetheless, I mentioned to her about the pressure symptoms, which I was experiencing and she prescribed an antibiotic for my sinuses, naproxen for mild pain, and propoxyphene if I had severe pain. None of them worked. Two weeks later, the attacks disappeared. After two months, the attacks started again, but this time noticeable more painful and on the right side of my face. I successfully managed at first by taking extremely hot and long showers. The steam would decongest me and suddenly the pain would go away. After two and a half weeks of non-stopping and excruciating pain, I visited my regular doctor once again. I had x-rays done to finally determine if the cause of the pain was a sinus infection and it turned out that it wasn’t. It was a case of cluster headaches. My doctor prescribed Imitrex 100mg and urged me to take it during the onset of the headache. She said that it was ok to combine imitrex with naproxen. After visiting my doctor, I have successfully stopped all attacks on time. I stopped drinking alcohol and I’m currently trying to stop smoking cigarettes. I’m also doing Reiki and I feel that it’s starting to help. It has reduced my stress levels radically. I also started exercising. My sleeping patterns are quite terrible. So, I’m planning on start taking melatonin, but I’m waiting to consult my doctor on that one. I’m speculating here, but I think that what is causing my cluster headaches might be either the fact that I’m a smoker or it is related to my sleeping habits. I noticed that drinking a strong cup of black coffee during the onset of an attack has helped me a lot. I’m currently afraid to go to sleep because I know what may be coming to wake me up. Anyhow, I deeply wish that we all get better. |
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Title: Re: Who is who here to the newcommers Post by pieface_49 on Mar 25th, 2007, 9:57am ClusterChuck, Unfortunately, I belong here. Actually, I should say fortunately, I belong here. The book "Trigeminal Neuralgia, Fighting Back" talks about CH. The book states unlike TN, CH sufferers typically get more and longer remissions and the problem may eventually go away. Does anyone know of people who this has happened to? I would say that my 10 year period of remission may apply. In my case, it also came back. The way I came across this forum was diagnosing myself with Sphenopalatine Neuralgia. Sphenopalatine Neuralgia has been associated with CH or diagnosed as CH in the past. As the medical profession becomes more educated, the diagnoses become more specific. My diagnosis at this point in time can fit TN-2, Sphenopalatine Neuralgia, CH or Symptomatic Differential Neuralgia (Chronic paroxysmal hemicrania). The Doctors and Neurologists I have seen have no clue what is wrong with me. Right now, it is trial and error. The trial and error or as I would call it, a design of experiments with medication. The indomethacin has had good results so far. At the time I would have had an attack last night, the monster could not come out. I could feel an attack trying to occur, yet it had no steam. Kinda like the little train that couldn't. I knew it was a blessing. I also am on the downward spiral, so I really do not know if it is the meds or the end of my cycle. I have had an MRI and a CT Scan with no results. Tomorrow I go for another MRI. I walked into the Docs office yesterday armed with information about CH. I was dismayed when he told me the drug of choice for CH was Indomethacin. I had not read that anywhere and only read it is used for chronic migranous neuralgia, what some folks call chronic CH. I was disheartened when the ER let me sit in a corner for 3 hours when it could have been some O2 or a shot of imitrex that took the pain away within 5 minutes. I told the Doctor yesterday my pee stunk and was extremely yellow. I believe my histamine level is high. Why he did not ask for a urinalisis or blood test is beyond me. I am sick and tired of being a piece of meat passed through our defunct medical system. Cha-ching, thank you sir. Why, when the dental hygenist noticed discoloration of my gum, right where the pain is the worst. Why the Neurologist let it go in one ear and out the other is beyond me. Perhaps she did not, and that is why I have an MRI scheduled? The gum specialist had said he had never seen anything like it before and took pictures. Cha-ching, thank you sir. I have been given no choice but to go and find the answers myself. I do have the choice of moving back to Pittsburgh, PA where some of the best Doctors in the country reside and I can probably find help. As time goes by, this decision is becoming more realistic. Thanks for letting me rant ;). I think being poignant is a side effect of the pain I have been living in for over 6 weeks. I have no problem telling anyone what I think. Something I notice or have not seen yet is people talking about corticosteroid (nasal spray) usage. I feel as though my condition may have resulted from years of corticosteroid sprays I used. I had to quit taking them because they resulted in an awful bacterium that would not go away in my nasal passage. I think there is the possibility they could have damage my sphenopalatine ganglion. Perhaps the corticosteroid sprays could have caused an imbalance of histamine levels? I need to do more research, but right now I feel my histamine levels have something to do with the pain. This is fairly self evident in my case. My urine was the yellowest and stinkiest during the peak of my cycle. Has anyone else come across this? |
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Title: Re: Who is who here to the newcommers Post by ClusterChuck on Mar 25th, 2007, 10:34am on 03/25/07 at 09:57:49, pieface_49 wrote:
Good, then WELCOME!! on 03/25/07 at 09:57:49, pieface_49 wrote:
If this doctor won't work WITH you, and sticks to his erroneous information, dump him. Get another one. Don't be afraid to print out things from this site, and give them to your doctor. on 03/25/07 at 09:57:49, pieface_49 wrote:
Yes, there are some that that has happened to. Two I can think of, is Charlie and DonnaHar ... Deej has also been PF for a long time, but that may be due to other factors, not his age and outgrowth of it. on 03/25/07 at 09:57:49, pieface_49 wrote:
That has happened to me, due to some of the meds I was taking. I am just to old and senile to remember which ones caused that. Good luck in your treatment and research! Chuck |
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Title: Re: Who is who here to the newcommers Post by pieface_49 on Mar 25th, 2007, 11:08am Maxine, Your description of the onset of the illness is identical to what I experience. The congested side at the onset. I cannot blow that side of my nose for nothing. Then, about 15-20 minutes into the attack, my nose will start running and running and running. It does not stop. I sit there piling up kleenex. Finally the running nasal drainage will subside and the pain as well. My eyesight will come back and pain will quell. This is if I am lucky. I am not lucky all the time and the onset of pain will last 4-5 hours. At about 45 minutes into the pain, I might be able to consider it about a KIP 10. This is when insane thoughts appear such as drilling a hole in my upper cheek bone or cutting out that area. Perhaps punching myself in the face or smacking myself. It sure is comforting to know I am not alone. NO ONE WILL EVER KNOW THE PAIN UNLESS THEY HAVE EXPERIENCED IT! People try to be understanding, but they can't. They can only be empathetic. I hope you have found what I have found and help is there for you. I am trying my best to make that a reality in my case. Knowledge is power and power is knowledge. Alone I cannot do it, but with the help of others and the power of knowledge, we can do it. |
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Title: Re: Who is who here to the newcommers Post by Yorky on Apr 2nd, 2007, 9:39pm http://i93.photobucket.com/albums/l62/yorky_2006/Americaflorida085.jpg me and the kids (meeting the blues brothers) i joined this site because.."every body...needs somebody...someone to love....... well im tony,my big girls toni, little girl casey, and danny oops i forgot tracy, hang on a min i will try. ps i am only interested in making people smile. http://i93.photobucket.com/albums/l62/yorky_2006/meandtracyonefingersalute.jpg |
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Title: Re: Who is who here to the newcommers Post by ClusterChuck on Apr 2nd, 2007, 11:24pm WOOHOO!!!!! A Jonny salute !!! Chuck (GREAT looking family ya got there!) |
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Title: Re: Who is who here to the newcommers Post by Yorky on Apr 2nd, 2007, 11:30pm cheers chuck. :) the jonny salute was taken when we went to meet helen....my first meet. what a lovely woman she is. |
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Title: Re: Who is who here to the newcommers Post by ClusterChuck on Apr 2nd, 2007, 11:37pm on 04/02/07 at 23:30:02, Yorky wrote:
SSSSSSHHHHHH!!! Don't let HER hear ya say that! The damn pushy assed broad has a big enough head!!! SHEESH!!! LOL Chuck |
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Title: Re: Who is who here to the newcommers Post by kshodges on Apr 6th, 2007, 11:23am Hello all - my name is Kelley. I am a long time lurker and figured I better sign up one of these days. I live in Round Rock, Texas. Woo hoo! I was diagnosed as having CH back when I was 17 (I'm 32 now). I have two little boys who want to be neuro doctors, so they can help mommy fix her headaches. They are 3 and 5. What ambition! Anyway, I just wanted to say thanks to you all and the many posts out there. I have tried lots of things over the years and unfortunately, nothing really works. Surprise! Verapamil, Lithium, 02, and recently, Imitrex injections. Honestly, those were kind of freaky. I got all hot and weird feeling. I wouldn't have minded if they actually worked. Then, I read on the Imitrex paper that those with Raynaud's should proceed with caution. Hmm. Oh well, easy decision for me - it didn't work. My clusters are hard to "fix" if you will. The actual cycle lasts about 7 days but returns every 3 weeks. The length of an actual headache lasts only about 20 minutes. They pack a punch, so don't let the time fool you. I resume normal life for about 45 minutes until the next attack hits without fail. I have got by on Advil, Aleve - you know the usuals. They may buy me a few PF hours, but it's back as soon as it has a chance. I hate taking meds of any kind, so I've been researching other ways to help - which brings me to why I am posting today! A few months ago, I began taking birth control (hubby is fixed, but I wanted to help my darn adult acne). The first month was decent - got the usual hits. The second month was unbearable. I had K8, K9 hits every hour. Now, how in the heck am I supposed to be a mom with this mess going on? I couldn't drive any distance without pulling over, etc. It was horrible. The BC by the way was called YAZ. Long story - and this isn't supposed to be about the birth control, but I am mentioning it, because I had to stop it and find relief somewhere. You aren't supposed to use Aleve, Advil, etc on a long term basis with it. Great. So, I saw MJs posts about the RC Seeds. I was on the Cbusters website in a heartbeat. Got the seeds and a pepper mill. I dosed that night and still had the hits every stinking hour (ALL through the night). Sleep? What's that? My husband had to sleep upstairs because of my, um, noises. ;) I Hadn't slept for almost a month, because they attacked every hour, so I thought, what the heck - one more day won't kill me, right? I am gald I did it, because the next day, while a bit sleepy (ha ha) my headaches had slowed down. They came every 90 minutes (hey that's big time for me) and were K5. Still hurt, still had my head tilted, left eye just tearing away, but a nice break from the unimaginable hits I was getting. I am due for my usual cycle (3 weeks later) and dosed again on Wednesday night. So far, I have only felt shadows. Is this stuff really helping? Holy smokes. Anyway, Had I not seen the posts from MJ (and Chris W) I probably would not have tried it. Sorry Chris, I was hoping it would work for ya! I don't know for sure yet if it is indeed working for me, but hey, one week of postponed monster CH is a party for me!! And so far, the intensity levels have dropped tremendously. That's a victory in itself. Sorry for the long winded post here, but wanted to explain how I got here. Thanks for all the support you guys offer. I'll put a picture up soon if I can figure out how. That's my husband's department. :) Cheers~ Kelley |
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Title: Re: Who is who here to the newcommers Post by artonio7 on Apr 6th, 2007, 9:02pm Hi Kelly, I'm glad you finally came in and introduced yourself. Sorry that you have to be here but I'm glad you found us. Do you have a Neurologist? Perhaps you should make an appointment. Don't be afraid to bring plenty of printouts from this site.... Many of the sufferers here have great success with Oxygen at aborting hits. There is a handy link on the left of this page titled Oxygen info. I hope you find relief soon. welcome to clusterville, with warm regards, Tony |
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Title: Re: Who is who here to the newcommers Post by kshodges on Apr 6th, 2007, 9:56pm Hi Tony - thanks! Yes, I have a wonderful Neurologist. 12 years ago when I came to Austin, I was her only female patient, so she was highly interested in my case. Unfortunately, I started my family and was unwilling to use long term meds while pregnant, etc. So, we lost touch until recently. I have two boys now, so I am DONE. And yes, I too was CH free during pregnancy. At least with the first one. The 2nd one, I wasn't so lucky with 9 week spans. Dr. Roy is awesome and will do anything for me. I tried Oxygen, but my headaches aren't long enough for it to be effective. People say it aborts within 10 minutes, but by the time I hit 10 minutes, I'm on the down and out side. Besides, I was running to the mask every 40 minutes trying to catch it before hand and it just wasn't working. I would really like to find something to at least interrupt the cycle and help prevent it. I am not comfortable with taking meds long term (like the verapamil and lithium). It just scared me - back then, I'd do anything, but I guess my perspective changed a bit after being a mom :) So, I am a bit more cautious. My Dr. in Houston (when I was a teenager) prescribed two 550 mg of Anaprox as needed. I took that for a long time - completely oblivious to the damage I could have been doing. My Neurologist here almost fell on the floor and was surprised I still had a stomach, liver, kidney, etc. Anyway - getting off the subject there.... I have tried a lot and hope the seeds work (or at least help). Kelley |
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Title: Re: Who is who here to the newcommers Post by pieface_49 on Apr 8th, 2007, 10:45am Hello Kelley, Welcome to the board and nice to see you posting and not lurking :). I too don't want to be in public and have a bad hit. There have been times at work where I left and other times stayed with a hit lasting 40 minutes to an hour. Some of my co-workers have seen and know some of my pain. I do attempt to hide the pain when it happens at work. Trial and error on the meds is not good. My Neuro has been trying trial and error for the past 4 years to no avail. I am out of cycle so I cannot prove/disprove the O2, Red Bull, Melatonin, Benadryl, Triptans and other abortives/preventatives available to help CH sufferers. I do know that when I read the testimonies, http://www.clusterheadaches.com/ finally, finally there were people who would understand me (still debatable) and I knew exactly what they were going through. Are you keeping a diary with the times/durations/kip levels of the hits? Taken the cluster quiz on the left? Taking this info as well as some other CH related info may help your Neuro in their diagnosis. 15 years is a long time with no proper diagnosis. |
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Title: Re: Who is who here to the newcommers Post by sawomble on Apr 8th, 2007, 5:12pm Hi all, I'm Sasha. I'm new to the board and new to cluster headaches. I can't remember having any before I was 28, when I had a headache wake me up at 3am for a week straight. Never had any pain like it, went to the doctor and after a couple of days of steroids, migraine meds and blood pressure meds, I was ok. The doc was reluctant to say it was cluster headaches because I'm a woman, but after an MRI, he confirmed it. That was about 3 months ago and now I'm afraid I might be about to start another cycle. I just have this feeling...starting with a dull pain in my neck, always the left side. It's the same way this other one "started". Not like a muscle ache...just wondering if anyone else here "knows" when they're coming on? |
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Title: Re: Who is who here to the newcommers Post by ClusterChuck on Apr 8th, 2007, 5:50pm Welcome to your new home! No one can tell you if you have a new cycle starting. If it happens, it happens. No one, not even you can predict it. What you need to do is arm yourself with the proper meds. It will be hard, as you don't know what will and won't work. The two, abortives, I recommend is oxygen and imitrex injectors. Read the tab on the left side of your screen "oxygen info" to learn what you need. Get these two, and if you start a cycle now, or in a year, they will be there and ready for you. You might also have a sixpack of Red Bull on hand, too, as that works as an abortive for many. Good luck, and don't be afraid to ask questions. I am sure you have plenty. Don't enter your questions here, start a new thread, and then we will have a better chance of seeing it, and others, who may have the same question, also have a better chance of seeing it, and learning at the same time you do. Good luck, and keep us informed. We DO care, Chuck |
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Title: Re: Who is who here to the newcommers Post by kshodges on Apr 9th, 2007, 4:42pm Are you keeping a diary with the times/durations/kip levels of the hits? Oh, Yes. many years worth of logged entries. Taken the cluster quiz on the left? Yes Taking this info as well as some other CH related info may help your Neuro in their diagnosis. 15 years is a long time with no proper diagnosis. I have a diagnosis, it's the treatment I am still working on. Tried lots of things - have a diary/log for everything, had an MRI, the whole 9 yards. |
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Title: Re: Who is who here to the newcommers Post by Zeitgeist on Apr 10th, 2007, 5:19pm Hi, I'm living in Norway. Male, 35, episodic. CH since I was 19. In my 12. cycle now. Correctly diagnoed at first shot, but it took some cycles before I seeked medical assistance. |
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Title: Re: Who is who here to the newcommers Post by ClusterChuck on Apr 10th, 2007, 6:17pm on 04/10/07 at 17:19:01, Zeitgeist wrote:
You have an EXCELLENT resource in Oslo!! Svenn!! Will I see and meet you in Trondheim in September? There is a big headache symposium then. I will be there. You should go. A lot of good information, and fellow sufferers to interact with. Meeting other clusterheads is a MUST!!! Chuck |
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Title: Re: Who is who here to the newcommers Post by Guiseppi on Apr 14th, 2007, 5:18pm To Sawomble, I know exactly what you mean! I get this "oh sh%$ they're back feeling at least a week before I get my first twinge. I'm a man so of course I ignore that and hope I'm just imagining it. I'm always wrong, they're always back, but being a man I also refuse to learn anything from it! (Being a man is much harder then it looks!) Guiseppi |
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Title: Re: Who is who here to the newcommers Post by Rosybabe on Apr 17th, 2007, 7:57pm Welcome Sasha and Svenn!! [smiley=wave.gif] Hoping your cycles end pretty soon!! if not...we are here to give a helping hand and an understanding ear . :) |
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Title: Re: Who is who here to the newcommers Post by DannyV on Apr 17th, 2007, 10:04pm Hi. I am Danny V,from Boston. GO SOX. 37 yrs old. Had em since 19. Went untreated for years . My life is screwed up from it to this day. I am lucky though for many reasons. Friends, Family.and now this sight. [Thank you Deej] Can someone tell me about this symposium in September? Chuck? Anyone? P.S. Ill try to get a pic up here. The Boston Globe once described me as an "Andrew Dice Clay lookalike." On the other hand, The Boston Herald saw me more as a "Saviore-fare Jimmy Olson" In the mid 90's I was singer for an award winning 9 peice "Jump Blues" band. I used to roll a keg into the clubs and they would say, "Hey, you can't bring your own beer in here! It's illegal!" I'd say "Oh, thats just my oxygen. Don't ask." |
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Title: Re: Who is who here to the newcommers Post by ClusterChuck on Apr 17th, 2007, 11:28pm on 04/17/07 at 22:04:12, DannyV wrote:
The symposium in September, is in Trondheim, Norway. There is a MUCH closer gathering in July, in Richmond, VA. Scroll down, and you will see a section dedicated to RichCon. Check it out, and join us!!! There is nothing like meeting fellow clusterheads! Lots of good people to meet, and information to learn at the lectures. Chuck |
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Title: Re: Who is who here to the newcommers Post by DannyV on Apr 18th, 2007, 12:22am Why thanks for making me feel welcome. I would thuroghly enjoy something like that. Not only do Ch's terrify me most of my life,but I have always found them incedibly facsinating. I truly believe that the answer is a simple one, but the world is not yet meant to know it. |
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Title: Re: Who is who here to the newcommers Post by FFR_Chris on Apr 19th, 2007, 9:47am Hey Gang/Sufferers, My name is Chris and found this site this morning after one of the MOST PAINFUL and DEBILITATING cluster head aches I have had thus far! I was ready to bang my head against my garage floor as opposed to putting it through a wall which I have done before. I am 38 and have had these for as long as I can remember and always diagnosed as having migraines. Till. . . I actually found a competent DR. who said "You have cluster head aches my friend." It was ironic because I was picking up my Imitrex that same morning and the pharma. said it sounds like cluster aches. The head aches come on like someone just shot me in the head! However I rarely get woken up from a sleep because of the meds I take for bipolar (I could sleep through a bomb blast). I also take lithium which does SQUAT too. Sex. . .FORGET IT! >:( Any type of physical exertion is also out of the question. As of now, those are the only 2 triggers that I know. I can't pinpoint any others because they come on so fast and so hard that I can't remember what I was doing pre-head ache. I've been hospitalized twice for these and the DR's thought I was looking for drugs till I finally grabbed him by the lab coat, brought his ear to my mouth and told him "I am not looking for drugs and find out what is wrong with me or I will make sure you do not walk without a limp again." All I want is relief. After that, besides getting a new ER. DR. and quickly too, I got and MRI and cat scan. They said it was nothing. What get's me is an ER. DR. looked at my cat/mri scans and not a neuro.????? That's like me looking at someones head and trying to decide what kind of hair cut I should give them (to a lesser degree of course) . . . I have not a clue. They did give me morphine which did SQUAT!!! This last round I was given percocets and they helped a VERY little. I am also pretty tolerant of pain meds because of a VERY broken leg and skin grafts. I was on pain meds for almost 9 months. These attacks last for weeks if not months, With a day or 2 of total relief in between. But always scared to make the "wrong move." If you all know what I mean (which I am sure you do)! Pain mostly effects the left side of my head, with the droopy eye, nasal congestion, teary eye(s) and sometimes, what feels like paralysis of the left side of my face. I think that that is it. :) At witts end guys. Chris |
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Title: Re: Who is who here to the newcommers Post by DannyV on Apr 19th, 2007, 10:03am Hi Chris. Are you using Imitrex INJECTIONS? Any other form will not work. For me at first it was a Godsend. |
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Title: Re: Who is who here to the newcommers Post by Guiseppi on Apr 19th, 2007, 3:40pm Welcome to the board Chris, sounds like you have a full plate. Curious as to what your dosage of lithium is. Lithium dosages for most other conditions tend to be at alower rate. Just for comparison, I'm male, 47, weigh 190 pounds, and take 1200 mg a day when on cycle. It's a very effective preventitive for me. Might be worth running by your doc. Again, welcome to the board I sure hope you can find some relief soon! Guiseppi |
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Title: Re: Who is who here to the newcommers Post by kshodges on Apr 19th, 2007, 11:13pm Hey Chris, Sorry you're having such a rough time. Have you considered trying Oxygen when having an attack? I have heard it works for many people at higher flow rates (and sometimes a special mask). I just got my fancy new clustermask today, so when I get back into my next cycle, I can try it out and share if it worked for me, or not. Are you episodic or Chronic? That might help your doctor prescribe a preventative that will be most effective for you, personally. There is a lot of good information out there and people have so graciously shared their experiences on this message board. So, go grab yourself a snack and get ready to read lots and lots of stuff. And then read more and more.. there's never too much information about cluster headaches! Kelley |
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Title: Re: Who is who here to the newcommers Post by ahhpoop on Apr 21st, 2007, 5:26pm piddle, i posted my intro a a sepreate post, "horse of a diff. color". my bad. |
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Title: Re: Who is who here to the newcommers Post by Jackbilly on Apr 24th, 2007, 10:38pm Hi there, I'm Rosie, and this is my first post. I'm a 21 year cluster head! have had a lovey 2 year break and of course like many thought I had finally beaten the beast !!! but 4 weeks ago the beast came back!!! woke me up out of a lovely pleasent sleep. Dam!! I'm on Zomig spray, topomax, and oxygen, hot cloths on the face and lots and lots of swearing!! Came across this website the other day, and have just been checking it out, it's a fabulous site and I KNOW I will be here over and over again, it's just so nice to know that there are people here who get it!! who understand that a) no I don't have migraine and b) it's not just a headache and c) I'm not making it up. For God's sake just look at my face!!! I got these headaches right before I left Ireland to come to America and actually thought I had a brain tumor (think the doc thought I had also) many docs later I've finally found a great doc who is really working hard to try to find the right combination of drugs that work, when I'm in the middle of a cycle I will try anything!! I do drink a lot of water anyway because of the topomax, it seems to help but again, just knowing that there are others who understand really helps a lot. so hello everyone and get used to seeing my name because I WILL be here a lot!! Thanks for listening Rosie |
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Title: Re: Who is who here to the newcommers Post by Jackbilly on Apr 24th, 2007, 10:46pm :) ;) I just read my post, and it sounds like I'm saying I'm 21 years of age.................... I wish !!! I'm 41 years old and have been suffering with these dam headaches for 21 years !!! sorry for the confusion Rosie :'( |
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Title: Re: Who is who here to the newcommers Post by Rosybabe on Apr 26th, 2007, 9:16am on 04/24/07 at 22:46:22, Jackbilly wrote:
[smiley=wave.gif] Hi Rosie! My name is Rosy also, don't worry about your post, you can be any age you want to be ;;D.. Sorry to hear you are having to deal with the beast :( But you are in the right place, read a lot and you will find people here than can help you, maybe with advise on medications or just a shoulder to cry on... Hang on and hope you start feeling better soon ;;D |
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Title: Re: Who is who here to the newcommers Post by MR_FLOOR on Apr 29th, 2007, 5:36pm Hi all I'm a newbe I've been getting CH for 27 years 17 untreated. I used to smoke pot cronicly. about 24 weeks ago I quit almost as soon as I quit the CH stopped.I thought I was cured for over 12 weeks not even a sign of a CH Then all of a sudden as fast as they went away they came back.And boy o boy did they come back up to 5 a day now. To make matters worse my insurance company decided they were not going to pay for any more Imitrex YAH.I called them yesterday they told me I had two more left on my perscription and I could have them if I wanted to pay for them $760.00. There must be a small markup on those ya think???? Well I know this don't help my pain but at least I can get it off my chest to people who understand me thanks for listening >:( |
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Title: Re: Who is who here to the newcommers Post by johnnypatrick on Apr 29th, 2007, 5:53pm Well by way of introduction;my name is Johnny Patrick Hixson from St. Louis, Mo. USA . Cluster headaches just reinforce to me the idea that life sucks and then you die. There is no way in hell people should have to suffer with this kind of bizzaro affliction. In many ways this is harder to go through then , say, a crippling disease because doctors and people understand those better. I've had to run through 4 general practitioners as well as 2 neurologist before I could get help. The damn doctors would not listen and continued to prescribe meds that were no good for cluster headaches! They would not give me prednisone because I'm diabetic and steroids raise your sugar.I could treat this myself if I could just walk into a drug store and grab what I need. I used to go 2 to 3 years between attacks but now it's every year. If God came down and said, " I'll make a deal with you John, I'll take the cluster headaches away but you will have to spend the rest of your life in a wheel chair I would say, "let's go for it! Anyway I don't know how to put a picture on this thing. I have dial-up and this thing is real bad and slow for dial up. I wouldn't even care if life ended tomorrow except for my kids. I'll stick around till they get older at least. We cluster F*$%& have nothing to look forward too. Just get older and sicker everyday anyway but we can add clock work friggin orange type headaches on top of that. Headaches that torture us and won't let us sleep or work in peace. Wish I could buy Imetrix on the black market! Oh gee let me plan a vacation with these headaches. Anyway I hope you guys can find a silver lining |
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Title: Re: Who is who here to the newcommers Post by Rosybabe on Apr 29th, 2007, 9:06pm Hi Johnny! Sorry to hear you are going through this, but the moment you give in to the beast , she wins!!! Have you tried Oxygen? It is the first thing most of us use as an abortive and works a high percentage of the time. Talk to your DR to see if He can prescribed it for you, if He doesn't there is always welders Oxygen (check out for topics about this type of Oxygen, plenty of guys use it and its a lot cheaper). There are other preventatives other than prednisone, I heard about Topamax and Lithium. I personally do not take preventatives but I take Cafergot at the beginning of my cycle, when the hits are weaker and I have enough time to take it because it comes in pills and do take time to start working. Imitrex can be found in cheaper versions (look for Sumatriptan, they come in pills and as nasal spray) These ones come from New Zealand. Of course there is also Red Bull but I do not know if it is safe to take for the sugar content, maybe strong coffee with taurine pills will work for you. Please do not give in Johnny, This site is great for the information you can get, read, read a lot and ask everything you want and you can also vent if you need to, We are here to help and hear you and give you a shoulder to cry if that is what you need. YOu will find people here ready to help. Hang in there and be strong, YOu can beat the beast!! |
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Title: Re: Who is who here to the newcommers Post by johnnypatrick on Apr 29th, 2007, 9:54pm Thankyou. Well I do you use the O2 at night when at home. Works pretty good for those but not the daytime ones. Imitrex? Well I can only get 9 pills a month and I have that many headaches in two days! Or six nasal inhalers or two injections. Topomax? Don't know much on that. Lithium? My doctor had a stroke when I mentioned that. "Oh no, he exclaimed,that is dangerous , I'd have to monitor your liver. yadda yadda yadda. Thanks though. Hopefully I'll be done in a week or two. |
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Title: Re: Who is who here to the newcommers Post by jimyhertz on Apr 30th, 2007, 11:14am H i all, I'm Jimmy, I am 45 and just saw a neurologist for the first time about a week ago. She told me I had cluster headaches about five minutes after I walked in. I had never heard of them. I've had headaches for about 5 years and attributed them to breaking my nose several times. Had surgery for a deviated septum and scar tissue repair last year in March, because they were lasting 2 or 3 hours. They were gone for a year and I thought I was free. Got hit again in February this year, saw the nose Dr. and did a few weeks of steroids etc. Shortly after that I got slammed with the wickedest bout I've ever had. 3 days of no sleep and then for a kicker on the fourth day a K 9-10 that lasted for 5 to 6 hours. I almost went nuts. Called the nose Dr. after 4 hours or so and when I was told there were no openings, I literally burst into tears. An appointment miraculously opened. I had to call my wife (who has always been there for me), still crying/sobbing uncontrollably, to come home from work and take me there. What a drag. Any way by the time she got to me it was all but gone. The Dr. told me the sinuses were good and not to take so much tylenol (10 or 15), because it'll wreck my liver. Like I gave a crap at the time. He gave me Hydrocodone and a month later I saw the Neurologist. She gave me Imatrex pills, Naproxen, and said take the Hydrocodone if needed. I have only fealt the need to use them once since then, but I took all three and they worked in about fifteen minutes. I guess at 3:00 AM I just didn't feel like experimenting or having to tolerate an extra 15 or 20 minutes. I will next time. I am sorry you're here, but I must admit that I am almost ecstatic to find out I'm not alone. I was starting to think I was going mad. Thanks, Jimmy |
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Title: Re: Who is who here to the newcommers Post by Rosybabe on Apr 30th, 2007, 1:58pm HI Jimmy!! [smiley=wave.gif] Welcome aboard!! I think you need to try Oxygen. Talk to your DR about it. Good Luck and hope you get to feel better very soon! |
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Title: Re: Who is who here to the newcommers Post by Guiseppi on Apr 30th, 2007, 3:32pm Hey Johnnypatrick, welocme to the nut house. I've been using lithium as a prevent for many years when I go on cycle. My GP had a heart attack too when I told him my neuro wanted to try it. It does take a half dozen blood tests when you first go on it to monitor how fast your body gets to a therapeudic level. After 2 weeks you don't even notice you're on it. I drinks a bit, I like my dark beers and blended whiskies when I'm off cycle. I'm 47 and so far the lithium and the drinking haven't done anything to my liver functions. Compared to other sied effects of available meds I'm okay with the lithium for now. Hoping you have a short cycle and then stick around the nut house anyways! Guiseppi |
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Title: Re: Who is who here to the newcommers Post by Kirk on May 7th, 2007, 3:11am Just to give folks an even chance. Since I haven't posted since page 2 of this thread. I have had these damn things since May of 69. Been Chronic since March of 2000. other than hanging around here since Nov-98, I have been known to do a little Fishing and Systems Engineering in the off season @newportnet.com and orcoast.com . http://img.photobucket.com/albums/v285/Kirk511/My.jpg jonny hopes to look as good as me when he grows up [smiley=smokin.gif] |
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Title: Re: Who is who here to the newcommers Post by taraann on May 20th, 2007, 8:35pm on 03/02/07 at 16:47:47, MathenyMan wrote:
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Title: Re: Who is who here to the newcommers Post by MR_FLOOR on May 24th, 2007, 3:50am http://im1.shutterfly.com/procserv/47b7db02b3127cce840aa9ff7b6c00000026100EauG7ZuxbMR Me and my youngest munchkins Trina 4 And David jr. 2 Dave |
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Title: Re: Who is who here to the newcommers Post by lynnsie on Jun 1st, 2007, 10:41am I'm new to this and not sure where to post what but I have been a ch for 3 months and I really have a hard time dealing with this. I have soo many questions? Lynnsie |
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Title: Re: Who is who here to the newcommers Post by ClusterChuck on Jun 1st, 2007, 11:02pm on 06/01/07 at 10:41:10, lynnsie wrote:
Hi Lynnsie! I am sorry you have to be here, but glad you found us! You are close to the right area to post. This is the right section, but start a new thread. Tell us your history, describe your hits, tell us what meds you take, who you have been to see (doctors) and what they said. Then ask any questions you may have. We care, and we want to help! Looking forward to your next post! Chuck |
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Title: Re: Who is who here to the newcommers Post by Almy on Jun 4th, 2007, 7:28am Hi All Happy to find this place. When I can work out how to do it, I'll post a pic. I am midway through about my 4th cluster at the moment, and you know that he's just around the corner, ready to pounce any minute. Up till about two weeks ago, I really thought I'd kissed goodbye to it all. About 2 years back I was diagnosed, but by the time I was, the cluster was over. At that time, I was given ergot spray, which was successful at first, but soon stopped working. Anyway, I'm, 41 years old, and have 2 beautiful daughters aged 8 and 6, who now wonder why I keep disappearing for a couple of hours without explanation (I seem to be set to about 7pm, but sometimes again around midnight) Any other Brit CHs want to get in touch, let me know. Cheers Alan |
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Title: Re: Who is who here to the newcommers Post by michael on Jun 4th, 2007, 1:18pm Hi Alan I live in Nottingham. Been an episodic clusterhead for 40 years, diagnosed 9 years ago. I only found this site in April. Good to hear from another brit although sad you have to suffer the devil. Mike |
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Title: Re: Who is who here to the newcommers Post by Almy on Jun 5th, 2007, 9:44am Hi Michael 40 years is a VERY long time. I hope you're free at the moment. Since I came upon this community and the OUCH UK website, it has been an enormous relief to know that people feel the same things I do. It also puts things in perspective to see how badly some suffer. I am already a firm convert to Red Bull (at least the cheaper variant!) as it staved the bugger off last night when I chucked a can down at Level 2. My first pain free day since the latest episode started. Off to my GP tomorrow, armed with some great info and a feeling that I know a little bit what I'm talking about. Best. Alan |
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Title: Re: Who is who here to the newcommers Post by Buzz on Jun 22nd, 2007, 1:24pm Hi there I'm 45 and have been getting clusters for about 12 years. After numerous mis-diagnosis from various GPs I researched my headaches online and went to my USELESS doctor with the results of my research, i.e. that I had many of the typical CH signs/symptoms. His reaction? "You people and the wretched internet." after which he prescribed Nurofen, not even bothering to look at my notes/print-offs etc. I persevered with him and eventually he prescribed prednisone (after telling me that there was no way he was prepared to prescribe O2 - "we don't have the budget and there are plenty of people with more serious conditions than you". So I went private. I met an excellent doctor who LISTENED and then went online while I was there and immediately set me up with an appointment with the London Migraine Clinic (and the splendid Dr Blau). Verapamil was prescribed and it sorta works... I'm now about to do battle with the NHS again and hopefully will be deemed deserving of some of their budget for O2. That's the headache story, on the 'who I am' side, I'm a graphic designer/writer/photographer. I have 2 exceptional children, one a sub editor of 19 and the other a rock musician, 21. I also am lucky enough to have a very kind, strong girlfriend who has been nothing but supportive and sympathetic. Last night, after a particularly nasty kip9/10 I noticed that she was crying very quietly; the headaches take their toll on everyone, not just me. :'( Nice to meet you all, I've been reading post here for a while, thought it was time to join the forum. I have yet another headache steaming in now so gotta go! :-( Regards Buzz |
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Title: Re: Who is who here to the newcommers Post by Rosybabe on Jun 22nd, 2007, 2:15pm HI, Linndsay, Alan and Buzz!! Welcome aboard!!! I am glad you found this site, keep coming back, make questions or add comments, this is your home away from home :D Hope you guys get to fell better soon!! PFDN for all!!!! Rosy. |
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Title: Re: Who is who here to the newcommers Post by LeLimey on Jun 22nd, 2007, 2:56pm Hello Brits! I'm an ex Londoner (born and bred) who is exiled in Nottingham. We often have meet and greets in London so if any of you fancy coming along anytime keep an eye out on both the general board and also the meetings board. There is one this Sunday if you want to come and join us dain bramaged freaks ;;D You'd all be very welcome! Helen |
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Title: Re: Who is who here to the newcommers Post by Geoff on Jul 22nd, 2007, 11:00am So many places to post I'm very confused, and that's scarey. Call me Geoff! I never heard of cluster headaches until this June when I found out first hand. I was getting 2-3 attacks everyday for 2 weeks and I finally checked into a hopsital. It was the worse pain I've ever experienced. I wa taking Imitrex when an attack would occur and after leaving the hospital I was on steroids for 2 weeks and now just varapimil. I did have two lidocaine injections into my neck as well. I didn't sleep at all those 2 weeks or even in the hospital. As soon as I tried to lie down the pain would start so I just sat at my pc and researched clusters. I guess they will come back next season. What made it worse was the initrex was $26 a pill and I was needing 2-3 a day. That scared the hell out of me. My neurologist finally GAVE me 8 injection refills. and myt regular doc gave me a voucher for 9 free pills. I've used one injection and one pill since leaving the hospital so I've got enough for a while if the cluster returns. I'm also researching buying fro India at only 3.79 a pill. Canada is still too expensive. I'm waiting on my prescription for oxygen and hope it gets here soon. Every time I feel the slightest pain starting behine my right eye, I get so scared it's going to start all over again. Anyway, it's nice to know others understand. The F***G nursing staff at the hospital I was in didn't understand anything. Each night around 2am I would get an attack. I would come out of my room , pulling my hair out, holding my head with Both hands and wailing in pain and the stupid nurse would come and ask,,,,, "do you have a headache? would you like some tylenol?" I wanted to kill her. They never had my imitrex on the floor either so, they'd have to go down 6 floors and pick it up when I needed it. I went many times without any meds. Welcome to the world of clusters. |
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Title: Re: Who is who here to the newcommers Post by LostAgain on Jul 24th, 2007, 1:51pm Hi, I'm 20 and I've suffered for for about 4 or 5 years. My clusters usually occurred in the fall and winter, but this summer they've been going really bad, worst than ever. I was taking 360 mg of Calan and had to almost stop because I was unable to train properly for football (I wasn't able to completely exert myself without being in extreme pain form trying to push myself during conditioning). It seems I can't take naps because I'll usually wake up 20 min. later with a cluster. I feel relieved finding this site and hope that maybe it will help. |
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Title: Re: Who is who here to the newcommers Post by tnt1655 on Jul 24th, 2007, 11:39pm Hi everybody! This is my first posting. I have been getting clusters since '91. If there is nothing else in here, it is the fact that we all know what a cluster is. I get ever so frustrated with people that do not understand the severity, and intensity of the pain. I am going through a rather intense episode these days. It is taking 6 weeks for me to get to my neurologist. My appointment is Aug. 13th. I told the girl on the phone that I might be dead by then, but she did not seem to care. I am on prednisone in the meantime. I have downloaded the Bower letter. It really is well written. My kids asked me what I wanted for my birthday, which is coming up soon. I told them that a good night's sleep would be good. later, Bud |
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Title: Re: Who is who here to the newcommers Post by Guiseppi on Jul 26th, 2007, 10:57am Welcome to the board Bud, and while i agree it's awesome talking to people who do understand, there is SOOO much more to this board! For the night time hits, you may want to try melatonin. The night time terrors were never a real problem for me so I never had to try it but many have posted success with it, taking it just before bed time. Do you have oxygen yet? Your gp can prescribe it while you're waiting for the neuro rferral. Hopefully the prednisone is buying you some pain free time while you wait for your neuro....but that sounds like a LONG time to be oj prednisone. If you can score some 02 it needs to be started at the first twinge of a headache, using a Non ReBreather mask, at a high flow, up to 15 LPM. (Nasal canulas are worthless, you can't get the pore 02 you need) Welcome to the asylum, start reading like a mad man you will have to be your own advocate in your treatment. Most docs are just clueless on these things! Guiseppi |
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Title: Re: Who is who here to the newcommers Post by gmanley01844 on Jul 27th, 2007, 3:29pm Thank you for the welcome I joined last night and I already feel very welcome I am 39 diagnosed with chronic cluster headaches last July. None of the 100's of meds that I have tried even came close to working..I have already found new ideas and possible treatments by being on here.. ;;D |
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Title: Re: Who is who here to the newcommers Post by GrandPotentate on Jul 27th, 2007, 10:12pm Well, I finally figured out how to do the photos, so I guess I should formally introduce myself. My name is Jon, and I pretty well fit the classic description of the classic CH'r. I started getting these in my late 40's. The first scared the crap out of me, but then it was over. Then another the next night. I was xrayed, poked, prodded, mri'd, got prescription glasses for reading, had all my wisdom teeth yanked out, etc. I got referred to a neuro who had me pegged with migraine, even though I disagreed with him on almost every one of the symptoms he described. (My mom had migraines, so I am familiar with those). Migraine dope didn't work. The next cycle he tried different migraine dope and it didn't work. Two big events happened in this story. My old GP (not the neuro!) finally did a little reading and said it sounds like CH. He set me up with oxygen with remarkably good results. Second, my kid's bartender referred my to this (new at the time) site. Thanks to all of you who got me through those bad times! My old job had me traveling quite a bit (I learned three words on three trips to Finland), but travel was unbearable during a cycle. I got a new job. I was a heavy smoker. I didn't have a monkey on my back, I had a Diane Fosse study group. But I was loopy enough during the last dope session to quit smoking without even noticing. Gained 40+ pounds, but went PF for 5 years, and got up enough nerve for a couple travels (photos are Dublin and Shanghai). I heard about a new oompah band, so I bought an old accordion and taught myself to play. I also play some serious music, but pay the bills with a good day job. Jump to the present - the cycle came back this year almost to the day of the previous ones. So They're back, I'm back. It put the dampers on the social life for awhile - didn't go more than ten minutes from home for a couple months. I had to tough this cycle out cold turkey (finagled some O2 late), but appreciated your support! I've got a neuro now (2 days after the cycle ended), and we have laid plans to meet next spring. In the meantime, I intend to live life to the fullest and enjoy the PF times! http://www.onetruemedia.com/media/14/076e87bf10dcdd36/0e74727e014f7304_large.jpghttp://www.onetruemedia.com/media/14/076e87bf10dcdd36/e43faae2874cee3f_large.jpg |
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Title: Re: Who is who here to the newcommers Post by thebbz on Jul 27th, 2007, 10:16pm Nice pics Jon... ;) thebb |
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Title: Re: Who is who here to the newcommers Post by GrandPotentate on Jul 30th, 2007, 9:59pm They're hard to find, I'm usually on the other side of the camera. |
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Title: Re: Who is who here to the newcommers Post by tnt1655 on Aug 2nd, 2007, 7:02am Hello again everybody, I set myself up with O2 for the time being. A week ago, I had possibly the worst attack in my 16 years of CH. I called the Dr to inquire about getting O2, and so far have not gotten the last call from the office in our game of phone tag. They did offer to have me come in for a shot of lidocaine, but I kind of figured that if the CH was not active at that time, it would be ineffective. At any rate, two days later, I started another major attack. I went to my shop (I am a farmer, and have a fairly good shop) and turned on the cutting torch. I set the O2 regulator down and began taking deep breaths of O2, depressing the blast lever as I inhaled. It seems to help!!!! I have done this several times, now. I need to get a small bottle that I can take home, and a regulator. I am not sure how I will set up the delivery. I called a med supply and they told me that they only carry the nasal delivery equipment and that a mask was dangerous. She said that masks are to be used under supervision only. Grrrrr. The old saying that necessity is the mother of invention comes into play here. Thanks for all of the advice, and keep posting tips. |
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Title: Re: Who is who here to the newcommers Post by phil_h on Aug 3rd, 2007, 9:10am my name is phili h- 55y/o married male, 54y/o wife/supporter laura,22y/o son/supporter jamie, 19 y/o daughter/supporter micaela............i am a recovering addict/alcoholic sober over 25 yrs . my wife is sober longer than me. my 2 kids have a few yrs sober each.........we are rich in family,recovery, miracles and love....just not material wealth.....anyway , i've had ch's - chronic from the start for about 5 1/2 yrs... diagnosed accurately after 6-7 mos. i've been on more rx's and have had more md's than you can shake a stick at !!!!!! i've had very poor results with most meds. in november 2006 i died 3x's in 1 day , from a fatal overdose of blood pressure meds....norvasc + toperal and a very high dose verapamil............mds said this cocktail was ok and these meds worked on different mechanisms and would not be a problem........... they were wrong....3 weeks later my pulse hit 20 ,then stopped.......... revived 3x's , coma ,double pneumonia and a 3 week stay in hospital , i had to seek a medical support team........... i'm now on prednisone - 90 mgs down to 5 mgs over 3 mos -this will continue , wellbutrin 150 2x's daily ,trazadone 100 mgs for sedative effect....i now can get 5-7 hrs of sleep most nights , o2 ,coffee , red bull/amps and meditations...... this is a great improvement......................... i found this bd in '03,joined 8/04...thanks 4 being here.. |
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Title: Re: Who is who here to the newcommers Post by Guiseppi on Aug 3rd, 2007, 11:48am Dang Phil, welcome to the board and congrats on the blessing of a little more time in this life! Your post is an excellent reminder of how important it is to take an active role in our health care, including monitoring drug interactions. Even the best of the best make mistakes!!! Glad you're still with us, welocme to the nut house!! Guiseppi |
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Title: Re: Who is who here to the newcommers Post by tnt1655 on Aug 3rd, 2007, 1:02pm While waiting to see my Neuro, I contacted my local Dr. office about getting O2, as I have read good things things here. Five days later, I got a call back from them. They want the info that I have. They know nothing about O2 for clusters. Keep posting. Bud |
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Title: Re: Who is who here to the newcommers Post by Guiseppi on Aug 3rd, 2007, 2:19pm On the left side of the board, just above the yellow tag that says OUCH website, is a tab that says oxygen info. Click on that and start printing. It has all the nfo your doc will need to justify prescribing it, and the info you'll need on how to use it correctly. It worries me that he knows nothing about 02 therapy as it should be your FIRST line abortive. Many many many benefits with no side effects. Good luck!!! Guiseppi |
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Title: Re: Who is who here to the newcommers Post by rollingroscoe on Aug 5th, 2007, 1:36am Hey there fellow Clusterheads. My name is David. I'm 48 years old and have been experiencing these fun little Thunderf@#*s for over 30 years now. I'm in the midst of another excursion to the limits of my tolerances and my poor wife stumbled up this AWESOME site and told me about it. I first started reading the stories and couldn't help but tear up. Finally a group of people who know and actucally feel what the hell I go through for real. What a releif! I see a wealth of information and support here. Well, I hope to be done with this trip soon! I'm using an herbal remedy to abort. Has been working well as far as keeping the attacks as short as possible. Usually 10-30 mins, sometimes longer, sometimes shorter. Sure as hell beats hours. I still get multiple attacks on the same nights though. O2 might be a good thing to try and the H2O therapy looks like another great idea. Bye for now. If I can ever be of support or help to anyone please feel free to shoot me (an email). Ciao for now, David http://i37.photobucket.com/albums/e91/Rollingroscoe/rollingroscoe.jpg |
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Title: Re: Who is who here to the newcommers Post by MR_FLOOR on Aug 5th, 2007, 2:30am Hey David, Welcome aboard.You will find this site to be intoxicating.You will be drawn to it like moths to a flame.You will also make many friends here so far you have already found 1.If we could be of any help feel free,ask away.BTW good name. Dave |
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Title: Re: Who is who here to the newcommers Post by rollingroscoe on Aug 5th, 2007, 11:11am Thanks Dave! I appreciate the warm welcome. I think I'm addicted to this place already. KTSSU (also an old biker term). I had a fairly easy night last night, just 2 short ones. I'm trying the extra water thing with my herbal concoction. We'll see. Have a good one! David http://i37.photobucket.com/albums/e91/Rollingroscoe/rollingroscoe.jpg |
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Title: Re: Who is who here to the newcommers Post by Sympatico on Aug 5th, 2007, 11:14am http://im1.shutterfly.com/procserv/47b7d624b3127cceb89263fea6fd00000026100Aat2bVs0ZN2LA Hi to all the clusterheads, Yes that's me in good times last year pretty much a week apart from this year! A week before getting hit... I'm 33, diagnosed 3 years ago with CH but has been suffering in an out since i'm 18! Only episodic on Fall time now i was suffering twice a year when i got diagnosed Spring/Fall...but it seems something broke the twice a year cycle!?! I was on the Canadian OUCH message board and i met a lot of nice people who helped me dealing with this condition... Like i said to my best friend it's very nice to see i'm not the only one with problems in the head... [smiley=hammer.gif] See ya'll around... |
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Title: Re: Who is who here to the newcommers Post by linaro on Aug 5th, 2007, 11:53pm :) Hi all. My name is Paulin Aro. Im 39. I'm brand new here. I'm with Cluster Headaches for the past 25 years. Attacks once every 3-4 years but the one attack means up to 5 weeks, daily, hourly brutal pain. I guess we're here all very familiar with pain. I'm now undergoing my latest cycle of attacks since 1st week July. Was warded in hospital for one week last week and am now, hopefully, towards recovery. I found this site earlier this month. Got so tired of trying to explain to others what I'm going through and thought there's got to be others like me who's having and/or have had this hellish ride before. Any friends I can make here with cluster would be comforting. We all would agree that absolutely no one but us will understand what we go through, what we live with. No painkiller works on me. Imigran helps sometimes but only for a very short time. Same with Oxygen. Pathedien too. When at one of its worst stages of pain, I'm that close to hurting myself, just so I can end the pain. I'm so exhausted from fighting this for this past one month. Would so love to hear from any of you guys... cheers, Paulin Aro Malaysia |
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Title: Re: Who is who here to the newcommers Post by SoCal on Aug 6th, 2007, 10:03am Paulin, You've come to a great place for information. Spend time looking around this site going through the message boards and other information here. It's helped me a great deal in discussing CH with my doctors and understanding the affliction. There are many who check-in who know much more than I do who will be able to assist you. Find the message threads specific to the questions that you have or start you own. Those seem to get more attention than the newcommer thread. The people here are wonderful! Good luck. |
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Title: Re: Who is who here to the newcommers Post by Guiseppi on Aug 6th, 2007, 10:30am Welcome to the board Paulin, you'll find we're a nosey bunch but we're also dying to help you!!!! Please let us know what you've tried, what has and hasn't worked in the past. Don't give up on something that didn't work once, often times success is found in a combination of meds, or in using the meds correctly. You mentioned oxygen didn't work for you. It's very effective for many but must be used correctly. It has to be started at the first hint of a headache, and you must breathe pure oxygen, using a 'Non Re Breather Mask", at a high flow rate, up to 15 litres per minute. Nasal canulas and rebreather masks don't work. Please give us a little more detail about yourself and see if maybe someone on the board has suggestions for something you haven't tried yet. We really do understand, welcome to your new second home!!! Guiseppi |
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Title: Re: Who is who here to the newcommers Post by mike4nu on Aug 9th, 2007, 3:07pm Hi folks, My name is Mike and I currently live in Fort Dodge, Iowa. As many of you were, I had been diagnosed with a bad sinus problem since I was a teenager. Fortunately a few years ago, my regular doctor was gone and his partner told me I might have cluster headaches and referred me to a headache clinic in Omaha where I was living then. I had an attack the night before I had my appointment. I was diagnosed with CH's and given some steroids, lithium, and veralin. The attacks stopped immediately. That was 2.5 years ago. This spring it felt like I was having another episode coming so I started again on the verelin. Even though I had been taking it, I had an episode start in the middle of June. I started back up on the lithium also. Within the last week the attacks have been coming daily, (day and night). My main problem is that I moved 3 hours away from my headache clinic, and i'm in a small town where they don't know anything about CH. I feel very fortunate to have found this site. I have learned more from reading this site the past day than I have since I was diagnosed. I have an appointment with a local Neurologist tomorrow and I now feel comfortable telling him what I would like to try as far as treatment is concerned. Thank you all for your contributions to this site and I look forward to participating in all of it. Mike |
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Title: Re: Who is who here to the newcommers Post by GrandPotentate on Aug 12th, 2007, 11:34pm Oh, the the good times I've had in Ft.Dodge! Business has taken me some interesting places over the years. Sorry to hear you came looking, but glad you found this site. These folks have helped me through a lot. There isn't much that I've gone through that hasn't been experienced by others (other than a couple trips to Ft.Dodge). It took several doctors and a lot of time before they figured out my head. Fortunately, my kid's bartender turned me on to this site. Read up! If you have questions, post them on the appropriate board and they will get pretty quick responses. |
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Title: Re: Who is who here to the newcommers Post by shanrich on Aug 13th, 2007, 10:26am Hi everyone.... Just found this site after doing research on cluster headaches (As I do everytime a cluster period starts). Seems to be a pretty organized site; lots of information. I am a stay at home mom of 4 beautiful children. I also attend college on-line to become a school teacher. I am in toward the end of a cluster period right now. I have had clusters for about 13 years. A week after I gave birth to my son, I ended up in the emergency room about 10 times in two weeks for the headaches. No one could tell me why at all. It took my 7 years to get diagnosed with cluster headaches (for it was considered a predominately male condition). I went on any drug they would give me at the time; steroids, calcium blockers, etc. Nothing worked at all. Imitrex worked, but not reading the dosage helped (2x's a day doesn't cut it when you get 4 or more a day). Script ran out in 3 days when it was supposed to last a month. Can you say ching ching $$. It was great while it lasted. Given the history of my mom dying from an anyurism and a stroke at a young age, my Dr. took me off it. I have been dealing with the clusters medication free for 3 1/2 years now. White noise seems to help me cope with it and fall asleep right afterwards. Other than that I don't do anything in particular when one comes on. +0. |
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Title: Re: Who is who here to the newcommers Post by Rosybabe on Aug 13th, 2007, 9:17pm Welcome aboard shanrich!! I am like you a stay home Mom and hopefuly I will get back to the work force pretty soon ;). Have you try Oxygen?? it is a very good abortive and works for a lot of us and it does not have any side effects. Read, read a lot in this site and in O.U.C.H. the more your read the better prepare you will be to fight the beast! Hope you get to feel better soon and please stay with us. We love to get to know new people here. Light is always on in here!!! pain free wishes!! Rosy. |
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Title: Re: Who is who here to the newcommers Post by Guiseppi on Aug 14th, 2007, 10:22am Hey Shanrich welcome to the board. I tip my hat to you for going the med free route, several people on the board go that route, not something I'll try!!! That being said, have you tried oxygen. When i feel one coming on I break out my little e-tank, fire it off and can be completely pain free in as little as 6 minutes. It's been a life saver for me and for many. Which ever route you take, by all means stick aroun, we're an entertaining bunch if nothing else!!! Guiseppi |
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Title: Re: Who is who here to the newcommers Post by daweimer on Aug 25th, 2007, 1:33pm Hi newbie 36yo Louisiana had CH on and off since 1995 (ON RIGHT NOW) :-[ ............looks like a very helpful website! theres actually other people that know what I deal with :) excited to know theres people I can talk to that can relate to my problem!! http://img.photobucket.com/albums/v738/daweimer/me.jpg |
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Title: Re: Who is who here to the newcommers Post by assaultme on Aug 25th, 2007, 8:31pm RollingRoscoe: KOOL CBR. I thought I wouldn't come here too much & bother people, but I saw the CBR and had to chime in. Looks like you have some stuff in er' What's it got? I can see lots of personalized touches, but I suspect there is more !!! I retired my motorcycle shop a few years ago and my son still builds choppers for a mutual friend, so I still have a real interest. Fast is it? Cheers, Dave |
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Title: Re: Who is who here to the newcommers Post by assaultme on Aug 25th, 2007, 8:57pm Ok, maybe I will go back on my word. I hope I am welcome to post my gibberish ;) I see we have other gearheads here. Maybe I can share a photo or two. This is my new X Runner. 6 speed manual trans. hi-perf. V6, 18" alloy w/Potenza tyres, gas Bilstein shocks, X-Braced frame, loaded with a bunch of good stuff. When I got this a few months ago, I thought it was very kool but needed a horsepower boost. Looked at a supercharger and rear gears. The trans gearing is close ratio, but wrong. That is to say that 1st & 2nd have too much of a ratio difference. With the additional 90 H.P. I might be able to compensate enough for my liking. Those two things would cost 6 grand and kill the resale value when I go to trade it in. So I'm thinkin' about dropping a small block Chevy in. 500 H.P. on pump gas would really put it where I want it. Same problem....it would be too modified for when I went to trade it in in 2 years. So I decided to leave it alone. I thought about all the options I had and what I would gain/lose if I started tweaking it. Logically, I could just build something much faster and not ruin the X Runner. After a bunch of thought, I will just enjoy it as-is. I know for non-gearheads this post is likely about as boring as a political speech [smiley=laugh.gif] But maybe y'all could post your bike/car for me if you like this kinda stuff. Cheers, Dave http://i229.photobucket.com/albums/ee223/assaultu2/XRUNNER07.jpg |
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Title: Re: Who is who here to the newcommers Post by Nienke on Aug 26th, 2007, 5:24pm Hi everyone! I'm Nienke and I'm brand new here! I'll introduce myself ;)... I'm 21 years old, living in Voorschoten, Holland. I'm still living with my parents, sister (who is going to live on her own within a month or 2) and 2 cats. 12th of July I graduated for nurse.. Now I'm working in a nursery home with people who have dementia. In April 2008 I'll go to Ghana for 14 or 15 weeks to work and travel. I'm a chronic a-typical clusterhead for 3 years now. Thinking back I had the first episode when I was 14, but we never saw it as cluster headache. February of 2004 I had another episode, but also never saw that as cluster headache. July of 2004 the episode was gone, and August 2004 it was back... Since then it's never been away.... I don't know if al the names are the same in Dutch as in English, but I tried Verapamil, Deseril, Amytriptilline and a lot of other things (I forget and can't look for it now). I tried acupuncture, natural physician, magnetizing and 4 treatments with heat (trying to confuse the nerve near my nose and the nerve at my C1-vertebra). The C1-treatment worked for about 2 weeks and then it stopped... At the moment I'm using Propanolol in combination with Taurine.. It's doing something, but not enough... At the moment I've one attack at nights and besides that I have chronic headache. Picture is coming later, don't have one now, because I'm not at home ;) |
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Title: Re: Who is who here to the newcommers Post by Lotus on Aug 30th, 2007, 9:57am Just realised that I have not posted our piccies on this board, so will do it now. This is Daniel, me ( Annette ), Edwyn (11) and Andy (8 ), also our labrador puppy Happy :) http://i18.photobucket.com/albums/b149/bargainbazzar/DSC02043.jpg |
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Title: Re: Who is who here to the newcommers Post by DWAL on Aug 30th, 2007, 11:53am THANKS FOR ALL YOU DO. EVERY ONE HERE IS SO HELPFUL AND KIND. I AM NOW HOOKED ON THIS SITE. NEW TO C/H ONLY ABOUT 9 MONTHS AND AM STILL FINDING MY WAY TO CONTROL AND UNDERSTAND IT. I HAVE HAD A ROUGH TIME AND IF IT WERN'T FOR THIS SITE AND ALL THAT HAS HELPED I WOULD BE TOTTALY LOST. THANK YOU, DAVID DAVID AND MY WONDERFUL GIRLFRIEND SARAH |
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Title: Re: Who is who here to the newcommers Post by rtd88 on Aug 31st, 2007, 11:06pm http://i228.photobucket.com/albums/ee117/ShorelineConstruction/DSC00307.jpg Hello Everyone, My name is Rick. Had ch for 28 years. My dad had them forever as well. Been coming to this site off and on for about the last 4 years of course when I'm in cycle. Found the most useful information here and I am incredibly grateful for everybodys input. I am Married 3 years (1st marriage) to a great girl. No kids (by design) but dogs and cats and fish. Probably should have done this before now so sorry. It is very amazing to know you all deal with the beast like me as I have never met anyone who has this except my dad. Anyhow very good to talk to you all. P.S. Thats my little headache buddy spike |
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Title: Re: Who is who here to the newcommers Post by Beastfodder on Sep 6th, 2007, 7:56am Greetings to All, Whilst I've been posting for a few years now – never introduced myself. I'm not actually called Beastfodder and usually answer to Andrew. 46 years old living in the UK just outside Congleton in Cheshire, very happily married with two children. As for the CH it's an episodic thing usually in Autumn although I had a springtime debut this year. Spent about four years misdiagnosed by my GP – leading to a sinus operation and a deep understanding of coping with being hit without any effective medication. After that life is good – alternatives and O2 have worked really well for me, certainly better than the prescription options which in my mind carry too much of an overhead. Suppose this is less about me than the brilliant support I've had, both here and from Ouch UK in terms of getting O2 supplies – though I'd really like to see them lighten up a little on their policy on alternative postings! Speaking of support I've got to mention and thank all those involved with Clusterbusters. Even when properly diagnosed with CH and using prescription meds my episode in 2004 was over 60 two hour plus hits over ten weeks. Since then it's been about 10-15 attacks over five weeks that have been hoovered up with O2 and a clustermask pretty quickly. Given the above makes it easier to spare you any photographic evidence of me! As for 'lifestyle' love my wine, Guinness when we're over at the in-laws in Ireland, the odd smoke and try to run up hills to counteract the drinking and smoking. Got a half marathon to do next month which should guarantee a couple of hours of 'quality time' to myself away from a very active 6 year old boy and little girl who's just started walking and is absolutely gorgeous. |
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Title: Re: Who is who here to the newcommers Post by chandlerda on Sep 6th, 2007, 4:08pm http://cyberchandler.com/wp-pics/David.Chandler.jpg Hi All, I have been perusing this site for the past couple of weeks, and figured it was about time to introduce myself. This site has done wonders for me in the terms of education on this condition and different ways to cope and make it through the tough days and nights... Thanks, it means the world to me!!! I'm Dave Chandler from Chicago, IL. I have been an episodic clusterhead for 15 years now, diagnosed about 5 years ago. I am married to my wife Juli, and we have the most wonderful 2 year old daughter Dillen. I am a SAN Engineer by profession and currently work with the Veterans Administration on different SAN related projects and day-to-day SAN operations/administration. P.S. That is Saddams pool in the background, and yes I do have my 'Corona' pictures next to it. Thanks All, - Dave |
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Title: Re: Who is who here to the newcommers Post by lorac on Sep 6th, 2007, 5:56pm [i][/i]Hi my name is carol, but my friends have called me lorac for years.. I started having episodic Ch's in 1992, and was lucky enough to be pain free for ten years... in 2005 they came back, and every other year is my time with the beast... I am soooo glad to have found this site....What a relief to know others with ch...I have learned so much from these nice people. I am 53, and now live in tennessee, with the greatest husband in the world. Together we have 3 children, and 8 grandbabies ;;D I hope together we can somehow bring more awareness about CH to the general public, because I believe there are a lot of misdiagnosed people out there that need our help... Thank you Thank you Thank you to the person who started this website LORAC |
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Title: Re: Who is who here to the newcommers Post by DocCissou on Sep 12th, 2007, 11:12am Bonjour! I am Cecile, supporter to my 31 years old boyfriend Stan, who's been suffering from chronical CH for 16 years. Even if I have not seen him going through a whole crisis, since he is taking Imitrex everytime he's got one, just seing him making his injection makes me feel sick in the stomach - I guess all the supporters know the feeling of helplessness.... at the same time I am so grateful this treatment exists, blessed be all the physicians that work on CH! I've been browsing lots of websites to find out information on how best to support him and understand what he's going through, and I just love the atmosphere of this one; I have a lot of questions for you guys, but I think here is not the place to ask them, so now I think I'm gonna browse the message board to find a little place where I can post them ;;D Thanks for your warmth and your help Cecile |
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Title: Re: Who is who here to the newcommers Post by wobwood55 on Sep 12th, 2007, 3:38pm Hi, Im Robert, sorry no pic. Im 27 and this is my fourth year with CH. Mine start in Oct and go strong until March the pain starts the second I wake and beats me down until I finally get to sleep. Getting concerned as Oct is right around the corner. Anyways, its nice to know Im not alone. |
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Title: Re: Who is who here to the newcommers Post by Father_of_5 on Sep 13th, 2007, 9:07am New to the message board, but not new to the CH.com website and definitely not new to CH attacks. We (me, my wife and 5 kids) have been in the Houston area for 9 years now. I've been fighting CHs since '88 or '89. I went misdiagnosed for probably 5 years before I figured out what I had on my own. I'm 43 now and my cycles have changed over the years. The first few years was twice a year, 6-8 weeks each, with each attack increasing in frequency and intensity during the course of the cycle until peaking midway and then regressing. The good thing is now they come about once every 12-16 months but with no gearing up phase... I start with the bad ones and the cycles run for a couple of weeks. Still looking for the magic combination of meds to abort these monsters. |
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Title: Re: Who is who here to the newcommers Post by DennisM1045 on Sep 13th, 2007, 1:11pm Hey Father. About time you said hi. I thought you were gonna stand out there in the street forever ;;D It's nice to see another guy with a large family here on the site. Anyway, if you've been fighting this beast this long I'm sure you've tried a lot of things. What works best for me is O2 and energy drinks with Imitrex Injections as backup. Good luck... -Dennis- |
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Title: Re: Who is who here to the newcommers Post by DiamondHeadAche on Sep 14th, 2007, 1:45am I am so glad I found this place... My Name is Jon and I am from Honolulu, Hawaii, USA. I am 34 and have been a CH sufferer for over 10 years now; just started a cycle yesterday. Diagnosed about year ago. What a lonely place this is when only 1% of the world has this condition (until I found you folks!). Happy to meet you all. http://i124.photobucket.com/albums/p2/ryu9090/ME.jpg Im the monkey in the middle. |
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Title: Re: Who is who here to the newcommers Post by MR_FLOOR on Sep 14th, 2007, 2:08am on 09/14/07 at 01:45:34, DiamondHeadAche wrote:
Whats up bro.Whats with the user I.D. Do you go there? What meds are you taking.Have you tried energy drinks? Tell us. Dave |
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Title: Re: Who is who here to the newcommers Post by DiamondHeadAche on Sep 14th, 2007, 2:34am Hi Dave, I am on Verapamil HCL 240mg right now. I tried Prednisone but all it did was leave me a bitter taste in my mouth. I have also tried the pill form of Imitrex but it didn't seem to work. CHs would subside before the med takes effect. I also had the Imitrex nasal spray. Funny thing is that I never did try it because my insurance company would only allow me 4 per month. Since I could have up to 6 CHs a day, I was always scared of running out of the spray and ended up never using them. Been scared of trying the injections too. When I get an attack, I find having my face in front of an air conditioner running full blast helps. Do energy drinks help too? Never did try that. As for the screen name - I live a few miles away from Diamond Head. Glad I found this forum. Did a search on CH last night and I found one that promotes LSDs as a cure. Magic mushrooms I will not partake. Jon |
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Title: Re: Who is who here to the newcommers Post by seasonalboomer on Sep 14th, 2007, 6:14am Jon, Welcome. I'm sorry you have a need to be here. It's a great site and one that has changed my life and my outlook on life. There are answers. As for the site you found. If it was clusterbusters this is a legitimate route which many people have had success with. They are not promoting LSD, nor is it a druggy site. They have done serious work in trying to research, promote research and disseminate information using alternative methods that tap into compounds that help cluster headache sufferers. So please be careful dismissing it so easily. I haven't gone this route yet but will be in the Fall using one of the methods they have identified which is tapping into chemicals found in the RC seed (Morning Glory). Many have had success. You may not want to consider it but as you learn about how different people suffer from this conditon, you will see that the pharmaceutical options, while often effective, often don't eventually offer answers for everybody. Good luck in your pursit for more pain-free days. Scott |
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Title: Re: Who is who here to the newcommers Post by bigbadwolf on Sep 17th, 2007, 10:07am Hi Everyone, I've just been diagnosed with suffering with Cluster Headaches. My god don't they hurt! (understatement). I've been suffering now for nearly 2 weeks, and I can't seem to see the light at the end of the tunnel. They're trying me on ANOTHER new set of drugs which will be the 4th thing they've tried. Is there anything I can do to help myself? |
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Title: Re: Who is who here to the newcommers Post by GrandPotentate on Sep 17th, 2007, 9:52pm Hey BBW, welcome. This is a great site, there are a lot of folks here who have been through the gamut. Read, read, read. Keep shopping for doctors till you find one with the experience or with willingness to crack some books and work with you. Right now I have a lousy GP, but he finally referred me to a good neuro. Read up on oxygen - it has worked wonders for me and many others. There is a little fuss, and a little practice,but it is well worth it. May your cycle be short and your hits tolerable. |
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Title: Re: Who is who here to the newcommers Post by Metalcreature on Sep 20th, 2007, 12:07am http://i199.photobucket.com/albums/aa300/Metalcreature74/001.jpg Hi, my name is Joey, and ive had CH for about 10 years now. Im so glad i found this site, as its changed the way i can now deal/handle these vicious things. If i can in any way shape or form help any of you, let me know. Iam here for each and every person on this website. Because we are all fighting the same war that i believe we will all win someday. By the way, im 33, and i live in the Reading area of PA. I work doing customer service for a living. (which is a headache in itself) Anyway, here is to painfree days, and nights, Cheers... ;) Joey B, Aka (Metalcreature) |
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Title: Re: Who is who here to the newcommers Post by ClusterFluster on Oct 4th, 2007, 10:43am I first thought it was KFC chicken. Then it thought it was alcohol. Then i thought may be i was excercising too much... then i suspected narcolepsy... but now I don't know crap! it just aches aches and aches! >:( God, why me? [smiley=huh.gif] ok ok, why us? |
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Title: Re: Who is who here to the newcommers Post by xxsarahxx on Oct 4th, 2007, 6:46pm Hi everyone, my name is Sarah, im 17 (18 in under 2 months, wooot! ;;D) and i'm from London. I was diagnosed with episodic cluster headaches a few days ago, although iv been suffering from it for about 4 years. I stumbled across this site when i was googling some info on cluster headaches and from what i'v seen it seems like a brilliant place to talk and realte to people who go thru the same things. T.c xxx |
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Title: Re: Who is who here to the newcommers Post by barry_sword on Oct 4th, 2007, 7:07pm Welcome Sarah. You have come to the right place. Pull up a chair and read all there is to read and then read it all again. You are with a great group of caring people here who are willing to help others like I have never seen anywhere else. Period! Barry :) |
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Title: Re: Who is who here to the newcommers Post by pbjculley on Oct 8th, 2007, 9:53pm Hello All.....My name is Phillip I'm 24 years old and have been suffering from CH's for approx. 7 years, but only diagnosed last year. I'm currently going through a set now. started about 2 weeks ago. I started taking Verapramil 180 mg last year and that helped pretty well. But I started them up this year and no help. Went back to the hospital and they upped it to 240 mg. Well needless to say my body was not having that. Started getting dizzy couldn't see straight, but my headaches were better. But they set me back to the 180. Well the headaches are back. I also take Relpax 40 mg for when I get the ones that wake you up from a dead sleep. I'm glad I found some other people that I can talk to that actually knows what I'm going through. |
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Title: Re: Who is who here to the newcommers Post by AussieBrian on Oct 8th, 2007, 10:03pm G'day Phillip, and sorry you have to be here, but if you look around the boards you'll find heaps of information that may be a help to you and ask all the questions you want. We're here to help so welcome home. |
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Title: Re: Who is who here to the newcommers Post by Emily on Oct 9th, 2007, 10:35am Hello, Thought I would introduce myself and have a go at posting some photos as I've been posting here for a few weeks. I've loved looking through the intros to everyone and putting faces to names. I'm 25, live in Wales but was born and raised for some of my childhood in Canada. I live with my OH and 2 dogs, Ruby (R) and Chester (L) who are both rescue lurchers. These are my babies! Here's attempt #1 at posting a photo: http://im1.shutterfly.com/procserv/47b7ce28b3127ccebe494bdca6fd00000026100AcsXDFs1ZOGLg My loves are reading, travelling and cooking. Just before CH arrived in April, my OH and I spent just over 3 weeks in Borneo seeing the wildlife. It was awesome! If you're thinking of going, or love orang utans, I have tons of photos I can show you! Here's me at an Elephant Sanctuary: http://im1.shutterfly.com/procserv/47b7ce28b3127ccebe494bdaa6fb00000026100AcsXDFs1ZOGLg We're trying to decide where to go next, but are waiting until the ch settles down and I can manage it effectively. Any suggestions? I have a younger sister, 2 step-sisters and an 8 yr old adopted brother. My sister also has a son, Oliver. He is the apple of my eye! I love spoiling him, feeding him e-numbers and sending him home. This is us (me, my OH Stephen and Ollie) out at a restaurant enjoying my favourite food - Indian! http://im1.shutterfly.com/procserv/47b7ce28b3127ccebe496433e69d00000026100AcsXDFs1ZOGLg I'm quite talkative and love a good chat. Feel free to PM me about anything at all. Thanks to all for making me feel really welcome here. This site has been a lifesaver. Em |
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Title: Re: Who is who here to the newcommers Post by ClusterNut on Oct 10th, 2007, 9:06am Hey all, 34 male here. Recently divorced. Been a clusterhead for 17 years now. I had 2 1/2 years without headaches!!!!!!!!! Yay!!!! Now they are back. getting 2 every night, but can feel shadow lurking around all day. I used to post on here all the time, but when the headaches went away, I kinda strayed, kinda wanted to forget that I had them. Anyway, now I'm back and will be here for a while. Will offer support in exchange for support lol. ;;D |
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Title: Re: Who is who here to the newcommers Post by schaan on Oct 11th, 2007, 2:54am thought id post pic of me and the woman who has to put up with me. this is us at our hobby in disney oklahoma http://i160.photobucket.com/albums/t161/KCZuks/ZK%20Labor%20Day%201/IMG_4749.jpg http://i160.photobucket.com/albums/t161/KCZuks/ZK%20Labor%20Day%201/IMG_4749.jpg http://s160.photobucket.com/albums/t161/KCZuks/ZK%20Labor%20Day%201/?action=view¤t=IMG_4749.jpg |
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Title: Re: Who is who here to the newcommers Post by Johku on Oct 11th, 2007, 7:29am Hello! I am 32 year old woman from Finland and I have suffered 11 years this horrible thing. Only last fall one doctor figured out what was 'wrong' with me. Then I found out I'm not alone in the world :) I have a husband and a son (8 years old) and they try to support me as much as they can. But it's still quite hard to explain why mom is banging her head against the wall or floor, or crying in the bathroom with icepack on her forehead... It is nice to know all of you. I wish you all beautiful and painless fall! Johku |
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Title: Re: Who is who here to the newcommers Post by Smurfysmurff on Oct 11th, 2007, 5:49pm Hello fellow sufferers. Newbie here. I'm a 21 year old college student at Louisiana Tech Univ. I've been officially diagnosed with CH since June, although I've more than likely been misdiagnosed since I was a child. When I was about nine and again when I was 15, I had "sinus headaches" bad enough to miss school, I would have a period of headaches (about six weeks) and then I was fine. When I was 19, I started getting headaches so bad I had to drop out of my spring semester of college. At that point, the doctor I was seeing diagnosed me with Rebound headaches. After a few months of these headaches, they eventually tapered off. However I would still occasionally get one, not quite going through a cycle, and not the worst CH pain but it would be enough to lock me away by myself for awhile. My CH's came back full throttle this past February. My current doctor at first dx'd me with chronic migraines. But after my third visit to her, begging for help to make the endless pain go away, she finally says, "We'll try something different for your cluster headaches." And then it was like a gong going off in my head. This was a new term for me, a new diagnosis. I was prescribed Maxalt, but my lovely insurance will only pay for a 3 month supply, which is 6 pills. 6 pills in 3 months, yeah right. The problem is, sometimes they work sometimes they don't, so I have to decide each time I have an attack if i want to risk wasting one or not. And as we all know, you really can't make decisions during an attack. I'm not sure if I'm episodic or chronic, as I'm pretty sure I've CH's since I was a child in episodes, however now after 9 months of nonstop attacks, attacks that have gotten so bad, I ended up getting fired from my job for missing days, I think I'm chronic. So can a person change from episodic to chronic? I also want to say thanks for all the wonderful information I have found on this sight. I'm learning so much that I didn't know, and it does help to know that I'm not just a big wussy who can't handle a tiny headache (my lovely sister's words). It is hard because, I live away from my family, so they've never actually seen an attack so they don't really believe how bad they are. Can I get any help on how to address this issue. |
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Title: Re: Who is who here to the newcommers Post by beasly1962 on Oct 28th, 2007, 6:55pm Newbie. 45 yo female, migraine or whatever for 30 years. Diagnosed as "sinus," then migraines, now ch. I appear to have migraines as well as ch. In a cycle right now. Blech. |
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Title: Re: Who is who here to the newcommers Post by danielpeterson on Oct 30th, 2007, 11:35am BEING THE ODD DUCK, as we say in Britain, altho I AM from Montana, I started getting CH (or so the doctor said) in my sixties. I, the inveterate reader, found that it is rare for older people to take it in the head. I also read here that you may be dragged over the coals if you mention capsicum (so why do so many here mention so-called energy drinks?) so, neophyte newbie that I AM, I will mention at the onset (pardon the expression) that I got a LOT out of the works of Doctor John Sarno. Sarno claims that many mysterious pains are simply a "smokescreen" thrown up, a natural defense mechanism, to distract the person from dealing with delicate emotional issues. IN FACT, from what I read, much of this site is focused on hardcore medical "stuff" rather than new-agey, touchy-feely "mind-body" connections.... LOVE YA... |
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Title: Re: Who is who here to the newcommers Post by seasonalboomer on Oct 30th, 2007, 12:25pm on 10/30/07 at 11:35:41, danielpeterson wrote:
This thread is primarily designed to introduce yourself, not to start arguments. If you would like to discuss your feelings of why Sarno's theories are important to you or question the use of energy drink, please take it to an area such as Medications and Treatments and we'll bat it around over there. Thank you. Scott |
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Title: Re: Who is who here to the newcommers Post by Ghost on Oct 30th, 2007, 12:31pm First off Daniel I say welcome. and hope you will have a good time helping others here. There are some her that try to help with specific advise, but if you really want help and want to get help it is probably best to be here for support and there in will help come. as time goes on then you can and should share what works for you. I would like to suggest though there are many here that may have tried it and it didnt work for them, dont be offended but we are all different and react differently to treatments. As a wise man has said here many times and has been quoted more ... give what you can and take what you need ... Welcome again and hope to talk more later. Mike Also known as Goat! |
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Title: Re: Who is who here to the newcommers Post by DennisM1045 on Oct 30th, 2007, 12:38pm First off, welcome Daniel! I'm sorry to hear you have clusters but you've found the right place for help and advise. on 10/30/07 at 11:35:41, danielpeterson wrote:
Hmmm... I was unable to come up with a single thread refering to Capsicum. Is it spelled right? I see from Wikipedia that it is a known catalyst for other herbs. Seems it might help with Kudsu? And Energy Drinks are called that because it's the easiest way to help someone find them. If we called them Taurine Drinks or Caffiene Drinks folks would have a harder time ;;D on 10/30/07 at 11:35:41, danielpeterson wrote:
So are you saying that Sarno is a quack or are you saying that our problems are all in our heads? Punn intended ;) -Dennis- |
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Title: Re: Who is who here to the newcommers Post by Jonny on Oct 30th, 2007, 9:46pm Daniel, checks out ok, not a troll. But, call him on his opinions if you want.....nothing new there to this site! ;;D |
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Title: Re: Who is who here to the newcommers Post by Linda_Howell on Oct 30th, 2007, 10:48pm Quote:
Yeah, what a concept huh. Hardcore medical stuff instead of touch-feely nonsense. Please bring this to the proper forum for debate. |
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Title: Re: Who is who here to the newcommers Post by Francesco on Oct 31st, 2007, 7:41am Hello, my name is Francesco 49 years old from Italy, married, two girls 22 and 12. I came here in 2004 for the first time I am suffering of CH from about 20 years, from 1988 to 1999 periodical, after she has become chronic, I am sure to have tried everything to have some relief. Since many years I use Oxygen (3000/6000Lt daily), 4x120 Isoptin, 4x400 Neurontin(new entry) and Imigran, and fortunately somehow they make me go on. Please forgive my English, because I do speak it but for me is hard to write it, so I' will introduce my self better next post...sorry about that. Pain free whishes |
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Title: Re: Who is who here to the newcommers Post by DennisM1045 on Oct 31st, 2007, 12:42pm Hi Fanchesco, welcome back! Your post was fine. We speak broken English here ;;D PF Wishes to you too. -Dennis- |
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Title: Re: Who is who here to the newcommers Post by Jonny on Oct 31st, 2007, 9:05pm Welcome back, Francesco.....keep posting, you write english better than I do. ;;D |
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Title: Re: Who is who here to the newcommers Post by slacker032 on Nov 3rd, 2007, 7:23am Hello All, I found this board a few years ago and posted here and there but never formally introduced myself. My name is Brian and I'm a 30 year old Episodic Clusterhead from Sherman Oaks, CA. I started getting these suckers in my late teens and was diagnosed in 2003. This board and the ClusterBusters site has been a godsend. I used to have 3 terrible cycles per year that would last 1.5-2 months. Had mixed results with the shrooms but I've had great success with the seeds starting at the end of last year. This has been the most pain free year I've had in years. I am currently in the midst of a bad cycle that started a little over a week ago but I hope to bust it with a 3rd dose of 65 seeds this Sunday. I recently decided to go back to school for a 2nd career and I plan on applying to medical school in a couple years. I was cruising along this semester until this cycle derailed it a bit but hopefully I can push through it and get back on track. A couple days ago, I finally got a prescription for O2 and hope to have that up and running within the week. Too bad the Clustermasx processing is down at the moment. Anybody have an extra to sell? Anyway, hope to meet y'all some day. PF wishes to everyone. |
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Title: Re: Who is who here to the newcommers Post by trigeminus on Nov 3rd, 2007, 11:05pm http://i239.photobucket.com/albums/ff98/remco_koppes/RemcoNubismiraZW_1.jpg Hello to you all hope you can see the pic....not sure now I'm RemCo just diagnosed at 34 started virapimil and oxy....finaly some relieve really thought i was losing it took a while to find the right Dr i must have been 7 or 8 when it first started from then the docters said it was migraine but i'm sure it was CH.....now i am just a shame that so much time wasted on treatments with no results but i hate lookin back and try to look forward it helps a lot to read about others experience's and i do recoqnize all with a tear in my right eye wishing you all PFD |
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Title: Re: Who is who here to the newcommers Post by MR_FLOOR on Nov 15th, 2007, 11:10pm Hi Trigeminus, If it's support your looking for you came to the rite place. You will meet many new friends,see you just met one. You haven't mentioned any medications. What are you taking for prevent? And also for abortive? Do you have a neurologist yet? Let us know,remember the more questions you ask the more answers you get. This site is all about learning about other peoples experiences (the way they handled them mite help one of us)meeting new people,getting helpful advise,and making lots and lots of the worlds coolest friends.So good lock to ya. To get the best results start a new thread under Cluster Headache Specific and ask away. Dave |
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Title: Re: Who is who here to the newcommers Post by christophercheek on Nov 29th, 2007, 3:17pm Hello to you all. I've been in this hell for over 16 years now they became chronic about 7 years ago then 2 years ago they went episodic and finnaly 5 months ago they just stoped then 2 weeks ago bam there back. I was diagnosed when I was 16 my dad had them and knew exactly what they were he went through a seres of surjuries for his sinus' and he hasn't had one since. I've tried all the medication no luck but the water thing seemed to help a bit I was shocked and amazed. It's morning time I woke 3 times last night, I'm so very tired but I'm alive thats what counts. I have a 14 year old girl and a 5 month old son and two step daughters 4 and 6. my daughter has become a great coffee maker she's had to put up with this her whole life. She has been a great supporter and so has my new wife she is also wonderfull. I'm 33 years old and I'm sad anyone else has to go through this but it's nice to be understood. I dont know how to place a pic on here or I would. My mother-in-law found this site researching CH because of me. I looked at it and read though alot of it and it brought tears to my eyes. Chris |
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Title: Re: Who is who here to the newcommers Post by DennisM1045 on Dec 6th, 2007, 4:28pm Welcome Chris! It's about time you found us. There are lots of helpful folks who know first hand what you are going through. It sounds like you have a good support system though and that is worth a lot. Tell us something about what works for you and what doesn't. That is how good info gets shared around here. Collective experience is the name of the game ;;D I'm a Father too so I know how hard it can be on the family. Sometimes I think it hurts me more to see the pain through their eyes. You aren't alone, in fact you never were. Welcome home clusterbrother. -Dennis- |
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Title: Re: Who is who here to the newcommers Post by iamwitu on Dec 7th, 2007, 4:21am hi i just found you website. I'm sitting here at work thinking that my cycle is about to start again. I read your opening page and i could almost feel the pain. I've had CH for about a year ot two now, but i've had migraines since i was a teen. All I know i that one day i woke up from a dead sleep and i thought my brain was going to explode. My wife and i refer to my headaches as the little man living in my head trying to escape through my eye. I'v been in verapamil for a little over a year. I swear there is nothing like being a grown man crying like a newborn baby. All i can say is thankyou guys for for being out there. |
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Title: Re: Who is who here to the newcommers Post by triprover on Dec 7th, 2007, 12:56pm Hello, I'm from south Jersey. I've had them for about 7 years now but was just diagnosed a year ago. I'm fortunate in that mine are episodic. As I've read other posts I have to steal what seems to be the mantra of, "I can't believe how many people get these and sorry for everyone that has to go through this." It's a wonderful thing that has been done with the site. To be able to correspond with people who understand is amazing. My family and friends try but you know in your heart they truly have no idea. Thank you to all of those that have posted as I have already learned more from this site then I have in the past 7 years. Good luck, hang on, and remember that if you got through it yesterday then you can get through it today. At least that's how I get by. When I figure out how to insert a pic I will. Brian |
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Title: Re: Who is who here to the newcommers Post by Sandy_C on Dec 7th, 2007, 2:28pm Welcome to the zoo both Iamwitu and Tripover (Brian). You have found the best place in the world to learn about CH, what has worked and what has not worked for hundreds of clusterheads. Please check all of the buttons to your left and read, read, read. There is a wealth of information from both episodic and chronic sufferers here...probably more knowledge than your own doctors. We are not doctors, we cannot prescribe, but what we can do is offer suggestions as to what might help, give you a shoulder to vent and cry on, and become a member of your newly extended family, because that's what we are...a family. Please post again on the newcomers board, cluster specific board, or medications boards, getting to know ya board and tell us a little more about you, what medications you have tried, not tried, what works, does not work. We'll all pitch in and try to help you in any way we can. Again, welcome to this crazy zoo. Sandy edited for spelling |
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Title: Re: Who is who here to the newcommers Post by ttnolan on Dec 11th, 2007, 1:35am http://farm3.static.flickr.com/2200/2102169389_b849b1bec6.jpg?v=0 Been getting nailed for 32 years. New to ch.com but not to clusters. I'm episodic, 2 months on, 4-12 months off. Front line is oxygen, imitrex injections, amerge (naratriptan), and I find opiates and muscle relaxers will keep the shadows just lurking when I need to go "cheap"... I have no insurance... double ouch!! |
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Title: Re: Who is who here to the newcommers Post by DennisM1045 on Dec 11th, 2007, 1:16pm Hi TT! Welcome to the board. Loads of good info here. If you don't see any new tricks to try maybe you have some to share! That's how this community works ;;D -Dennis- |
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Title: Re: Who is who here to the newcommers Post by christophercheek on Dec 16th, 2007, 1:06am on 12/06/07 at 16:28:55, DennisM1045 wrote:
Dennis thank you for the warm welcome... Chris |
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Title: Re: Who is who here to the newcommers Post by barry_sword on Dec 16th, 2007, 7:28am Hi Chris, and welcome to your new home. This family is amazing to say the least. Glad to see you are using o2, works for so many here including me. Barry |
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Title: Re: Who is who here to the newcommers Post by Miz_D on Dec 17th, 2007, 4:02pm Hi Everyone, Found this site in 2000 just after being diagnosed. Have posted a few times, but mostly I just come here and gather info. Am a chronic clusterhead originally from Vncouver, Canada, now living in Maui. Semi-retired mom to 4, stepmom to 3, grandma to 1. I love reggae music, tennis, traveling and am learning to play golf...argh! What keeps me sane is my amazing husband and the support of my family, my 4-legged familiar Buddha, this website, a great sense of humour and a wicked attitude... 8) Here's a pic pf me hamming it up in front of Lulu, my car and another of Buddha at the beach getting his swim on ;;D http://pic60.picturetrail.com/VOL1664/10357732/18562638/293521343.jpg http://pic60.picturetrail.com/VOL1664/10357732/18562638/293521346.jpg PFDAN to us all! |
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Title: Re: Who is who here to the newcommers Post by Shoot_Me on Dec 18th, 2007, 12:47am My headaches are episodic. Thank God there is some relief. I'm in a cycle now and have some ways of controlling this BEAST! At the first sign (jaw pain) I immediately down a few cups of coffee (w/caffeine) and at times the BEAST does not make its way up to the top of my head. Unfortunately this does not always work. Also, I drink lots of water (hot) daily. This also helps in other ways. I am very healthy (no meds) and physically very fit. The first headache appeared about 7 years ago but I had no idea what was happening. All I wanted was a gun! I never mentioned any of this to a doctor but after some research (and finding out exactly what this insanity was called) I've decided to seek help. The info on this site is great. Thanks ;) |
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Title: Re: Who is who here to the newcommers Post by hdrider on Dec 18th, 2007, 11:19am Hello all! 1st off, let me extend a heartfelt (and headfelt) "thank you" to each and everyone of you that have posted here. The information here has been a Godsend for me and my wife. Also, thanks to my loving wife who found this website (you know us bullheaded males) and MADE me read it ;) I'll try to keep this as short and informational as possible. I'm 54, happily married with 2 great kids, one grandson and another grandchild on the way ;;D We live about an hour north of Milwaukee, Wisconsin. I'm eposodic. At least I think I am. This cycle has me very worried. The beast has been visiting me for about 8 years now. I was diagnosed about 5 years ago. My hits start in early to mid October. Typically, once we get several killing frosts, about the 1st week in November, my cycle ends. This current cyle began in mid October and continues to this day >:( Up until I found this site, I downed Ibuprofen hoping for relief. Sometimes it came, sometimes I danced for frickin' hours at a time. Lol, and yes, my language gets VERY colorful to say the least. I now use energy drinks (Red Bull, Rip It, etc.) and 4 Way nasal spray as abortives and I take 10mg of Melatonin daily as a preventative. My hits are now lasting anywhere between 5 mintues and an hour. In looking at all the other alternatives everyone else is using, I consider myself to be very, very lucky. If I have to resort to using prescription drugs and O2 I will definitely do that. A couple of weeks ago, I was so exhausted from several weeks of continuous hits, I more or less collapsed on our livingroom couch and didn't wake up untill the next day. Keeping my fingers crossed, but since I've started taking the 10mg of Melatonin, I've had 5 days of PF nights ;;D ;;D If I or the wife can be of any help to anyone, please let us know. It's the least we can for our fellow CH'ers. I'd be more than happy to post a picture of the wife and I with our Grandson on our Harely if someone would be willing to help me out. Just IM me and I'll send the picture to you. Best wishes to you all for many PFNaD's!! hdrider (Ron) |
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Title: Re: Who is who here to the newcommers Post by Guiseppi on Dec 18th, 2007, 11:52am Hey Rider welcome to the board. I hear you about being slow and bull headed. If my wife hadn't found this board I'd still be chewing aspirin for relief! Please don't be hesitatnt about trying oxygen as an abortive. I have e-tanks all over my house, they are my security blankets. From the time I start to get the tension in my neck and the tingle in my eye, to COMPLETELY pain free can be as short as 6 minutes using only oxygen!!!!!! So welcome to the board, thank your wife for me for being a supporter, they really are what keeps us sane! Wishing you a short cycle and a LOOOONG remission! Guiseppi |
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Title: Re: Who is who here to the newcommers Post by hdrider on Dec 18th, 2007, 8:36pm Hey, thanks for the warm welcome Guiseppi, I appreciate it! As is typical for me, after I posted I wanted to add a few things, mostly for the newbies here, so they may not feel so alone or maybe even embarassed. The beast resides in the left side of my head, face and jaw. Ever since the 1st hit, it seems to end up in a tooth on the upper, left, back side. To this day, because I'm getting non-CH headaces or shadows in this area, I'm bound and determined to have the SOB pulled. When I do, I'll come back and report what happened. Also, my hits are easily 9's or 10's. They always come about 1 to 2 hours after going to bed. I've since learned, beating my head on the walls or floor, pulling my hair out or crying like a baby doesn't do me any good. So, for now, when the beast visits, it's total isolation from anybody, including my wife, total darkness, no lights and definitely no being around other people.....period! Just me suffering through these damn things and then silently, carefully, crawling back into bed, praying for a few hours of sleep. During my cyles I have shadows that range from 3's to 7's. I've found a quick slam of 8oz to 16oz of energy drink works wonders. Damn, I would've never figured that out on my own ;) Oh, yeah, we buy the Rip It products at our local Dollar Store, it's 75% less than the Red Bull at our local grocery store and it works just fine ;;D Again, good luck all CH'ers and if I've done my homework properly, special thanks to Annette. Too bad our numbers aren't great enough to warrant some well funded, well researched scientific studies. Let's hang in there, together. Who knows what we can come up with? Merry Christmas and Happy Holidays to you all! hdrider (Ron) |
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Title: Re: Who is who here to the newcommers Post by Redd on Dec 18th, 2007, 10:38pm Well hey there and welcome Ron. Another Wisconsinite I see. We seem to have more than a fair share of WI representitives round this place. Sorry you gotta be here. Energy drinks are great. Adlis has a Red Bull Alternative as well that is cheap and works like the pricy stuff too. I always keep a 4 pack in the drawer at work, and 3 times that here at home. Welcome to the nut house. You gotta have a twisted sence of humor round these parts some times. Look forward to getting to know you and your wife more. Redd |
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Title: Re: Who is who here to the newcommers Post by KillerQueen on Dec 21st, 2007, 5:06pm I'm sorry, folks, I really am...My cycle ended a few months back, thank God, and I haven't been around since, but I haven't forgotten all of you for your support during the cycle. I feel guilty that I haven't been around to offer support to you guys. My thoughts are with each of you, and to you newcomers, you're in the right place for a fabulous support group! Here's me and my babies! http://i83.photobucket.com/albums/j308/killerqueen727_photos/GracieMommyLily.jpg |
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Title: Re: Who is who here to the newcommers Post by LeLimey on Dec 22nd, 2007, 7:58am I was wondering where you'd gone! :) Can't have too many Queen fans around here so welcome back and I hope you stay longer this time. There are always new idea's etc so you'll be well armed by the time that next cycle comes around - and you'll have fun in the meantime! love Helen PS Happy Christmas!! |
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Title: Re: Who is who here to the newcommers Post by KillerQueen on Dec 22nd, 2007, 9:55am Helen, you're so sweet! You have a good holiday, too...I'll be around more. I'm just feeling very blessed to have been pain free for months now. I finally got an appointment with a neuro (three weeks after the cycle ended) but at least he knows I exist, so next time he'll be able to get me right in. I had to wait three weeks to see him (after seeing my GP who had no clue what was going on, and kept prescribing vicodin)...Reading this board made me remember going to see the doc and crying saying over & over how I was afraid to go to sleep at night. Have a good Christmas, too! I can't believe it's only a few days away... xoxo, Jess |
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Title: Re: Who is who here to the newcommers Post by Ten on Jan 5th, 2008, 3:34pm Hi im David. Found this place a few days ago. I'ts taken me ten years. I'm episodic and going thru my worst cycle to date. If I can help in any way shape or form then I will. It would make me smile the hugestest smile to know that I had prevented just one CH. Unfortunately I too am a bit of a luddite and struggle with anything more complicated then a pencil. So for now no pic im afraid. Until one of you kind souls educates me. |
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Title: Re: Who is who here to the newcommers Post by imfareware on Jan 5th, 2008, 10:05pm Now that I found the hello newbie form, hello everyone, my name is Mike. I've been suffering with these since 1988. They really sux. My family and me have learned to deal with them. Leave me alone, and I'll be back in about 1 to 2 hours. I just started my cycle last week, they are mild so far (my mild would kill the average person if you know what I mean). During the day I slam some caffine and it helps. Night times scare me. The fear of the midnight onslaught. Thanks for being there!! |
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Title: Re: Who is who here to the newcommers Post by humsol on Jan 8th, 2008, 3:24pm Hello Everyone, I've been suffering from CHs since 1994. I still remember the first time the beast attacked me. Just an average day from school and then WHAMMM! Am I dying? I'm I having a stroke? Is it a tumor? OH my gosh I'm going to die a virgin! And 20 minutes later I'm wedged in a corner screaming with one stuffed side of my nosed stuffed, crying like a baby, sweating, a knife clinched in my hand when someone grabs me and rushes me to the hospital. Ahhhh, I officially became apart of the family....too bad it too 6 years and 5 doctors before I was diagnosed correctly. In 2000 I signed up as a clusterhead and have been reading these tips and tricks every time I had a cycle. This the best site to ever come into my life. Up until a week ago had experienced a 2.5 yr PF remission so I didn't come and visit out here at all. I thought it would just tempt the beast to come back and visit me. I bragged to all that I had beaten the beast and then just like an old 80's song you don't want stuck in your head....the beast found me and started tap dancing on my eye whispering "Remember me Rich...I'm back!" I tried to deny it when he only teased me with a week worth of Kip 3s and then he pulled out the cardboard and started break dancing for a 2 hour set on night and I had some left over Trek injections from 2006. I felt the rush of heat flow to my head as the trek numbed my head and warded off the beast, but he came back for an encore the next night. side note.... Definition of Fear - It's Saturday night, you have one injection left, no refills, doctor's office not open till Monday morning, you have shadows and your wife is freaking out...what do you do? What do you do?! I hoped back on this website from 2 year absence and this wonderful family of friends had the answer for me. Who knew you could split up your injections in thirds and use a q-tip to inject yourself!! Praise the Lord, Sweat Jesus, Hallelujah!! Well that was three days ago. In in cycle again, and I decided to register to post messages on this thing instead of just reading them. I have a little supply a Trek....as much as I could afford that is, making ice slushy bags for the night, have the O2 on order from the doctor to be delivered today and praising the Good Lord above for giving me a wife that supports me through these hard times as I know is scares her to death to see me each night dancing with the beast. You all are great and everything I have in my arsenal is due to each and everyone of you being strong and giving me hope that I'll soon again have PF days and nights. PFW to all! Rich |
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Title: Re: Who is who here to the newcommers Post by billlmack on Jan 12th, 2008, 12:14am My name is Arelious McCormick III and I've been a chronic clusterhead since about 1999. I'm happy to be part of a community that can really understand. I'm currently on Toamax and imatrax. I've been here off and on over years and just now decided to post and interact a little, Thank You all for being here; the support of course is a plus. Feel free to contact me about anything. Billlmac@aol.com http://i243.photobucket.com/albums/ff133/billlmac/100_1314.jpg |
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Title: Re: Who is who here to the newcommers Post by George_J on Jan 12th, 2008, 8:00am Welcome home, Rich and Arelious. Glad to know you. When you have a chance, try posting a a new thread by way of introduction on the "Getting to Know Ya" board--most of us monitor new posts in that area a bit more often than we do in the "Who is who" thread. You're liable to get a few more responses that way. Again--welcome to the nuthouse. All the best, George |
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Title: Re: Who is who here to the newcommers Post by LesleyK28 on Jan 16th, 2008, 6:29pm Hello all.... My name is Lesley and i have been a sufferer for 6 years now. I am 23. That sucks. I can remember back to my very first cluster attack. Like it was yesterday. I imagine that all of you are the same way. I have read this site before and decided to join. Yay! There are people out there that CAN relate. I hate trying to explain these things to people and doctors that just look at you like you are crazy. I did go into remission for 2 years after a GREAT woman doctor perscribed me Cyproheptadine. I stopped taking it because they went away but I have had a few attacks since. None that were severe enough to have to make a trip to the ER until last Sunday. They swiched sides and got worse. I did find a doctor who gave me a script for the Cypro again and now we are trying the Prednisone. I feel better today and was finally able to have enough energy to go back to work. The prednisone has made me little jittery and my boss thinks its funny. It kinda is. :) I feel like I am cursed for life most of the time when I get an attack. But I am trying not to do that anymore because that won't help any to pity myself. My husband of 1 year has only seen me have 2 attacks and I get so frustrated with him because he just doesn't understand. I think he just needs to research it a little more. Maybe he will get it. I just want to thank everyone out there who are just like me. And it comforts me to know that you are out there! |
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Title: Re: Who is who here to the newcommers Post by LeLimey on Jan 16th, 2008, 8:15pm Hi Lesley Its nice to meet you even if it IS here. Has your doctor prescribed anything else to go with the pred? That's usually given while you'reramping up on another drug such as verapamil. Pred can't be taken for too long and the attacks will return once you stop it unless you have something else ready to go. It's usually used to allow cover while another drug builds in your system. Have you ever tried Imitrex or any other triptan or Oxygen? If you post a thread lower down the board you'll get a lot of help and advice as more people will see it there. Also, get your hubby to come and read the site and to post as wel, we'll help him understand! We can offer support for him too as it's bloody tough to see someone you love go through this. I know, I have a boyfriend with CH as well as being a sufferer myself and I have a child with it too. I'd sooner go through attacks myself any day than see them in pain. We can understand, help and support both of you I promise! Hang in there, we'll all get through this together Helen x |
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Title: Re: Who is who here to the newcomm Post by johfel on Jan 24th, 2008, 4:14pm Hi! Im 34 yrs old, from Sweden. I have had CH since -97. Up till now i ve had a bout once per year, lasting about 2 weeks. Now, im in a bout with 3-4 seizures per day since the 3:rd of December. Verapamil doesnt seem to slow the attacks anymore, so i am trying out steroids for the second day now. I pray to god it will help (although i am not religious), i have shadows for the second time this day right now. 4 years ago i finally got Sumatriptan injections, they are really helping me out. Before that i was undiagnosed, i have tried most of the conventional painkillers available, getting frustated about doctors prescribing paracetamol and sleep. I guess you know the drill... Ive quit smoking due to CH, and started to exercise on a regular basis to keep in shape and was hoping that the devil within would die. This tuesday i was at the hospital and got O2 for the first time, it helped ok. (Neraly collapsed at the reception, just shaked, screamed and cried) I am getting a tube to my bedroom next week. Otherwise i work as a manager at a government youth institution, i am married to a nurse and have three kids. I like hunting, weightlifting and computers. Life is not fun at the moment. |
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Title: Re: Who is who here to the newcommers Post by Stinger on Jan 25th, 2008, 7:39pm My name is Pete. I originally joined this site in 2000, but have been away. My headaches started in 1989, although I didn't know what they were until 1998. My cycles usually come evry 1 1/2 to 2 years and last for 4-5 months. I get from 3-5 headaches daily for this period. 1 -2 at night during sleep. I ahve taken the usual meds: Topamax, prednisone, Stadol, Zomig and some others I can't remember. I have not tried 0xygen, but will this time. I have been "Slamming the Bull" for a few days and it seems to help quite a bit. And am trying Melatonin at night and that too, seems to be working. I'm glad I came back to this great place. I am happy to meet all of you and plan on hanging around this time. Good luck to everyone. |
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Title: Re: Who is who here to the newcommers Post by maryo on Jan 28th, 2008, 9:51pm I'm 55. In a year I will be able to say I've spent half my life cursed with ch. At that time a couple of Dristan (old formula) bailed me out. Since then my first husband, children (since birth) and second husband have made me feel OK about whatever it is I've needed, the ugliest being pacing the floors moaning with my eyes closed knocking over furniture cursing doctors. Discovered this site in 2001 (I think), which was after 22 years of non/misdiagnosis as a hysterical female. What a lifesaver! http://pic60.picturetrail.com/VOL1710/10592611/18917108/301198351.jpg The love of my life and best friend http://pic60.picturetrail.com/VOL1710/10592611/18917108/301200442.jpg the sons who supported their ch mom |
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Title: Re: Who is who here to the newcommers Post by 2ze on Jan 30th, 2008, 6:16pm hi im justin im 37 im married and have 1 son and 3 step children.ive been having CH for 10 years but the doctors didnt think it was CH.ive been having a cycle now for 18months.ive seen this site before and was like most worried about posting anything.my gp thinks im making things up about the pain i go threw daily.no doubt many of you have heard all this before.i just hope that CH.com can help |
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Title: Re: Who is who here to the newcommers Post by Lebowski on Jan 30th, 2008, 7:09pm http://img.photobucket.com/albums/v137/gindaor/Paulandkids.jpg Name is Paul. 33yo married guy with 2 kids. Also I am a Licensed Veterinary Technician at Cornell University Hospital for Animals. Glad to be here with all of you! and thank you so much for all of the information to help me with dealing with my CH!! |
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Title: Re: Who is who here to the newcommers Post by otakuhouse on Feb 5th, 2008, 6:43pm My name's Aaron Stewart-Ahn. I'm 32. First cluster headache was in England when I was in grad school at 24. Lasted two days, NHS doc told me I had a sinus infection. At the age of 27 I got my first real bad bout. After months of misdiagnosis and wrong meds and having to live with my parents for six months watching them watch their child suffer in the prime of his life, a friend of a friend who was a surgeon told me to look up cluster headaches. Found this site, marched into a neurologists office refused to accept anything other than what I had armed myself with here, and life started to get better. I work in film - my first real movie job was on Shrek 2. I spent several of the last weeks on that movie doing minimum 18 hour days and weekends while going through a bout. The film world is demanding in a smug, far too serious manner. They actually had me work from something like 1am to 6am as I knew at the time the cycle wouldn't hit in those hours. But I made it across the finish line on that one. Since then I left became my own boss and am now a director doing ads and music videos. Whenever someone does something typically stupid in the media world - usually pressuring you with fear - I try to remind myself "you can't scare me. I have cluster headaches". Last year I was nominated for a Grammy for a long form music video project I was in charge of. Don't mean to brag but i want to say that having these headaches and pursuing my dreams has been completely possible. Even if it is exhausting sometimes. Don't ever let _me_ forget that. If I ever get anywhere in this crazy business I plan on remaining spotlight free as possible but I will make one hell of a public noise about our condition. Thank you Frank Capra for writing about your own troubles with the claw... |
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Title: Re: Who is who here to the newcommers Post by GonnabeatemJudi on Feb 15th, 2008, 5:34pm :'( Hi. I am glad to have found you folks. I am reading the posts and guest book and feel lucky compared to so many of you. I am 49 and had my first bout with these monsters 13 years ago, I was blessed to find a neurologist who diagnosed me almost immediately. Verapamil was just out and he would inject me in his office. It was not out in pill form. Is it now? My first time in hell was 13 years ago and lasted about 6 weeks. One a day. Same time each day. They came back 6 days ago after a bout with the flu. They wake me up and make me insane. My head aches dully all day as a prelude of what will come and I fear the sleep. I have two great kids and a husband who feels bad for me but nobody really knows how it is. Until I found you all. I had my reg. doctor fax my last years chart notes to the neurologist which is now required before they will even give me an appointment. So, looks like a weekend of hell. I have researched and found that ch folks have a high level of histamine in their blood during attacks. I am taking benadryl twice a day. I also read on an alternative med site that 5mg melatonin might help. I take that before bed. Did it first time two nights ago and slept thru the night! Last night however, was my worst one yet. I am mad at science for not having found a cure. My dad had these bouts a couple times in his life and as far as I know, out of 5 kids, I am the only one that gets them. I would not wish these on anyone. I feel so bad for you chronic sufferers that tonight before bed and as often as I remember I will pray for you. I will pray for all ch victims, God Bless you all GonnabeatemJudi |
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Title: Re: Who is who here to the newcommers Post by Becky on Feb 23rd, 2008, 8:33pm Hello i am 29 and have had cluster headaches now for 5 years. When they first started i thought i had a brain tumor!. I try not to let them grind me down but as you know that is easier said than done. i hope from this site i can get to now people who know what i am going through because people cannt understand unless they have them too. the only advice i can give is keep takin the tablets and pray to God that they stop :) |
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Title: Re: Who is who here to the newcommers Post by barry_sword on Feb 24th, 2008, 7:34am Hi Becky and welcome. I, as many here, also thought it was a brain tumor or something similar. I was given a Cat Scan which ruled that out right away. What is your doc doing for an abortive and a preventive for you? I have o2 for an abortive and take Verapamil as a prevent. Read all that is to your left and print off the o2 info and show your doc, hopefully he will be willing to listen as to what helps some of us deal with the beast. Welcome to your new home and remember Clusterville is open 24/7, someone is always available to help you if you need to talk or rant or whatever. Barry :) |
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Title: Re: Who is who here to the newcommers Post by hotprestwich on Feb 24th, 2008, 10:23am [img][/img] |
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Title: Re: Who is who here to the newcommers Post by hotprestwich on Feb 24th, 2008, 10:25am how do i put a picture on here? |
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Title: Re: Who is who here to the newcommers Post by Becky on Feb 24th, 2008, 2:44pm Hi Barry thanks for a warm welcome. I hope this reply has got to the right place cuz I have only had my computer 2 days andI am still tryin to work the stupid thing!!!! :-[ I must have been lucky cuz when my clusters started my doctor diagnosed straight away. i was given Sanimigran to prevent and Imigran Radis to relive. I changed my doctor when I moved and she kept to the same meds. When i had my last episode (June 2007) it lasted for 6 weeks and at first she upped my meds and when they still didnt stop she sent me to see a nurologist who said it was Migranus neralgia (fancy wording for clusters) then ordered a brain scan to be sure!!!!. Cutting a long story short I am now taking Epilim and Imigran. touch wood (some one pass me some wood!!!! ;;D) I havnt had an attack since :D. |
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Title: Re: Who is who here to the newcommers Post by coach_bill on Feb 25th, 2008, 7:30pm Hello all, my name is Bill Roberts im 39 i live in Euclid Ohio suburb of Cleveland. Im married to my soul mate Barbara, we have 2 wonderful girls, 9 year old Isabella and 15 year old Samantha. I got my 1st round of cluster headaches when i was in my early 20s, after 3 weeks of HELL at night it finally went away, so i just thought it was over untill 2 years later back they came. Well the doctor said cluster headaches, gave me a pill and away they went again, well every 1 year or so (sometimes i get lucky 2 years) as we change back the clocks bang, my life gets stopped on a dime. I coach girls fastpitch. were the central park crushers, its a blast, and those kids keep me going sometimes!! for a long time i thought i was going crazy, i thought that they made this cluster stuff up just for me, because i never met or even heard of anyone eles who had clusters. And when people told me they had the bad headaches too, (you know the real bad ones where you have to take 4 asprin and lie down for a couple of hours), I really thought i was nuts, untill i found this site. this website has been the best thing i ever found, i learned so much here, i used to be so afraid, not anymore.. I didnt know half the things i needed to know untill clusterheadaces.com. i thought i was alone. But were not. Thanks to everyone so much.. coach Bill. [http://www.hopecube.com/me.htmlgif][/img] |
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Title: Re: Who is who here to the newcommers Post by jacquibim on Mar 5th, 2008, 7:12am Hi there, my name is Jacqui, married to David. I have four sons, Darryl, (30), Damien, 29 and 27 year old twins Richard and Alun. Damien, (better known as Bim) and Richard are Teachers, Bim's wife and Richard's girlfriend are also teachers. Darryl works at a turkey factory and Alun doesn't - work at all that is!!! I have 3 grandchildren, Lowrie, (pronounced lori), Oliver and Paris. I have had clusters for about 10 years, but was only diagnosed a few years back. I have only been on this site for about 3 weeks but the support and things I have found out have been great. Can't thank everybody enough. My granddaughter Lowrie has Migraine, and so does Paris, but I am not sure that Paris' are migraines, as she screams and shouts and rolls about on the floor when she gets one - sound familiar? Also Lowrie gets very quiet when she has a migraine but not so Paris, llike I said she screams -but that could be cause she is only 3 and Lowrie is 10 but has been having them for about 6 years!! Suppose we will have to wait and see. |
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Title: Re: Who is who here to the newcommers Post by debOUCH on Mar 5th, 2008, 9:23pm hi! i am deb, i live on Long island and i am 50& fabulous :-*, xcept when the beast visits!!!.kinda new to this beast!! long story short................35 days of the beast, the big one at night, either before i fall asleep or a few hrs after...minimum 2 hrs..i am so afraid to go to sleep!!! :'( pacing, crying, wrapping head in heated herbal wraps, walking crying..................... >:(........little ones throughout day,left side pain from top of head, down thru ear, into jaw, mouth teet..............treated for sinus infection, 3 diff antibiotics, 5 day prednisone, when i went off HE returned!!! starting a log watching my symptoms during "the visit" and basically diagnosed self! off to new doc today,she feels i am right, bloodwork, ct of brain with contrast to rule out mass,(nxt week ) 20 day supply of prednisone.............i hope on this i will be pain free, but then what happens when i come off??? and wine triggers and i am a tasting room manager @ a vineyard!!!!!!!!!!! my dad also startd getting these 24 yrs ago when he was my age.............uggggggggggggg................kinda feeling depressed, and even tho i have a support system of family and friends, THEY ARE JUST NOT GETTING WHAT I AM GOING THRU!!! i am so frustrated & so sad.i believe they think i am blowing this all out of proportion however I AM NOT!!! i feel so alone because they just "don't get it".........but they say you only get what u can handle, so i will just keep reaching for the rainbow after the storm..........................thanks for listening deb |
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Title: Re: Who is who here to the newcommers Post by Tojokom on Mar 18th, 2008, 4:41pm hello all, just found this site today and looking it over i think i found a place to talk with others that understand. atm got that dull squeezing feeling like another is fixing to hit me any minute. had my 1st bout in 1992 and they thought it was blood pressure related.. had a couple years break from CH and another bout hit.. they have been increasing in attacks and time of attacks for the last 8 years. now i can plan on having 2 bouts a year lasting 3 to 4 months each run. the longest run of a single headache was almost 4 months in 2003 yes 4 months of eatting advil by the handful, chewing them like M&M's. found a doc that let me try a bit of oxygen lo and behold! it didnt kill it but it was bearable. have had like 6 mini attacks in last 3 days and kinda dreading the mother of em which i know is comming. reading over CH info i feel a tad left out. not only do i get them while i'm asleep but i can get them during the course of my regular workday. fine one minute and down and out and headed for the time clock to punch out and go home in less then 5 minutes. i'm kinda lost on the medical names of types. so it's behind and on top right eye with the icepick stabs thru to the upper teeth. accompanied with eye swelling /tearing and blocked / nasal drainage. bouts norm last 3-4 months at a run. with CH lasting 20 minutes to 5+ hours in duration. well reckon that covers it in a nut shell more to come as we get to know ya'll tojokom |
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Title: Re: Who is who here to the newcommers Post by LivingBarometer on Mar 19th, 2008, 5:56pm Hello! Man where should I start... I'm Henry 28 years old I live in Holland(the Netherlands)I was diagnosed CH a month ago(febr 2008 ) My last cluster period was from september 2007 to febr 2008 I'm In"remission"if that's the right word? http://i110.photobucket.com/albums/n95/Furious_henry/PROFIELFOTOHENRY2.jpg Only last 2 days I've had what I believe are shadows,2 times each day typically at the same times of the day. It begins with a crackling sound In the back of my head and then I get goosebumps all over my skull [smiley=yikes.gif] followed by that dry/stuffed nose feeling. They're KIP lvl 2 and 30 mins to 1 hour long. I've recently been diagnosed but I've already read a lot on the i-net about cluster headaches,since I know what I've got I'm completely fascinated by it! My first real CH hit was In 2005 I was diagnosed as a sinisitus but I've red that a lot of CH sufferers where diagnosed that way. I had it on both sides!!!for 3 months! It was the most terrible thing In my life the pain was excruciating as if my head was gonna explode!Not to speak of the fear of having somekind of out-of-control infection or tumor in your head wich is close to your brain! This was the first time In my life I actually really thought of yumping out of the window roof... I better not write what I think about my doc... I've pushed for an appointment with an neurologist this year by taking my girlfriend into his little office as a withness to see his complete lack of humanity. I,ve had a hit 2 years ago and this year,last year no hit I think because I went to holiday to Crête that year. I'm an episodic left sider btw,autumn/winter(for now) Nobody can point an excact reason for CH but I have my theories. I know I've had an heamorage after being hit by a motorcycle when I was taking a turnway on my bike I.ve struck the street hard! I smoke(also pot),I drink(weekends) and don't excersize a lot. I drink a awful lot of instant soup(msg!)eat an awful lot of chips,nuts ets(msg!) Well I eat a lot with msg I've discovered,Ít's almost sick if I see In how much food it is!!!It's not forbidden In my country.+a lot of salt(jodium)wich amplifies the msg effects. This stuff Is causing terrible hyperventilations to me! Recently I suffer them a lot even when avoiding msg now as much as I can. I've quit drinking beer,I smoke much less and want to quit that along with the pot smoking as soon as possible too.But first I've got to get my mind together after hearing the news. Well I also have hobby's:music both passive and active mostly rock/metal,online poker(better get no CH when I go play live poker ;) ),and some computer gaming(civ rules!) I've got a nice girlfriend who was totally shocked when she realized the nature of the beast. I've showed her some video's at y-tube and she got mad çause I showed her those horrible video's,but later at night she started crying and told me it was good to have confronted her with the truth and that she never could even imagine the pain I was going through she also nows she's gotta face the facts. It's good to have someone who understands you especially when you have CH I've noticed. I know there are a lot of people who are In more pain than I was and for longer periods of time like chronics. Some stories made me cry instantaniosly,and I never cry! When I hear about children having it and patients who go through living hell without health insurance it really hurts me deep inside! I hope clusterville will help me deal with the problem. I'd like to share the misery as well as the fun :)with you all. By the way my other name for "the Beast"would be "the finger of God"because the main pain is focussed at a specific location in my nose. |
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Title: Re: Who is who here to the newcommers Post by Linda_Howell on Mar 19th, 2008, 6:17pm Hi and welcome Henry. Go here for instructions on how to post a picture: http://www.clusterheadaches.com/wwwboard/index.html MAN!!!!!! so many newcomers lately. I hate that, if you know what I mean. A warm but very sad welcome to everyone. |
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Title: Re: Who is who here to the newcommers Post by Kitty1973 on Mar 22nd, 2008, 10:16pm ::) I am new!! I am 34yrs old, mother of two teens:1 14yr old boy and 1 15yr old girl. I have also been married for 16 years to the same man(although he loves me and I him, how much longer he can stand to be snapped at for asking if there is anything he can do for me when I am in pain remain a mystery). I have read several posts here, and I feel I have found a group of people who have suffered not only the pain of the headaches, but also the pain of what they do to your life. I am sooooooooooo glad that finally I can talk about CH's and not be looked at as crazy!!!!!!!! |
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Title: Re: Who is who here to the newcommers Post by Kitty1973 on Mar 22nd, 2008, 10:20pm ::) I am new!! I am 34yrs old, mother of two teens:1 14yr old boy and 1 15yr old girl. I have also been married for 16 years to the same man(although he loves me and I him, how much longer he can stand to be snapped at for asking if there is anything he can do for me when I am in pain remain a mystery). I have read several posts here, and I feel I have found a group of people who have suffered not only the pain of the headaches, but also the pain of what they do to your life. I am sooooooooooo glad that finally I can talk about CH's and not be looked at as crazy!!!!!!!! |
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Title: Re: Who is who here to the newcommers Post by Jay_Mowry on Apr 5th, 2008, 11:20am Hi, my name is Jay. I've been living with clusters for six years now, but was not properly diagnosed until about three years ago. I get them once a year, usually in the summer months. For some reason, my cluster season started early this year, which kind of freaks me out. It's bad enough that it happens at all, but I was a little more comfortable when it was predicatable. It sucks that no one really understands how debilitating it really is.. people offering me Tylenol and stuff.. it's all kind of insulting in a way, because I feel like they just don't believe it's as bad as I say it is. Like I'm a wuss for complaining about a little headache. Whatever. I can handle a little pain, but a cluster is in a totally category, ya know? Jay |
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Title: Re: Who is who here to the newcommers Post by Jay_Mowry on Apr 5th, 2008, 9:15pm This is me, by the way: http://img359.imageshack.us/img359/8976/liveatcedarsloungers3.th.jpg (http://img359.imageshack.us/my.php?image=liveatcedarsloungers3.jpg) |
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Title: Re: Who is who here to the newcommers Post by cronic_head_case on Apr 13th, 2008, 6:24am Hi everyone, My name is Dan from London England. I've had Chronic Cluster headaches for about 13 years. I'm 28 now married with a 3 year old daughter, who might i add is getting really good at being quite and bringing me nasal sprays when i have a headache. Top supporter and real Florence nightingale! lol I've tried most medications and the ones which work usually give me about a year and a half without pain which is nice. The worst thing i find about the CH's (besides the pain) is the fact that not many people out side CH.Com, get what it's all about. Most just assume you've got a slight headache and tell you to take an aspirin or something. So that's me anyway. If anybody wants or needs anything then give me a shout. Even if you just want to speak to someone who gets what your on about. Just like to big up Dr Peatfield at charing cross for all the good work he's done for all us CH sufferers in the UK. Without him I'd still be undiagnosed and alot worse off. |
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Title: Re: Who is who here to the newcommers Post by Terrell on Apr 13th, 2008, 4:34pm Welcome Dan. I am Terrell. I am new here too. This is an awesome website and a blessing for those of us with CH's. You will find lots of support and understanding here. It is nice to come here when so many outside the world of CH's really don't understand what we go through. Again, welcome! |
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Title: Re: Who is who here to the newcommers Post by ccanniff on Apr 17th, 2008, 12:21pm Ummm Hi! I found this website , and I'm thankful for it! I have had what I've been calling a 'skull cramp' kicking the 'you know what out' of me for the last six years spring time ... now for me it has a name --CH-- :(. It scared me because I thought I was dying over and over again. At least sometimes I just wish that I could when the "claw' grips and shakes me. I never cried befor these episodes, I feel helpless. before the real pain comes I get pressure , like being in an airplane, or and I feel like I can fight it , but never for long, by trying to adjust the pressure in my ears, by yawning, pinching off my nose, stuff like that. but then OUCH !!! |
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Title: Re: Who is who here to the newcommers Post by warnberh on Apr 17th, 2008, 2:59pm Hi there, My name is Ryan. I'm 25 years old, and I have been "suffering" since around 2001, with my clusters occurring twice a year for about 10 days a piece. I am extremely glad I found this site. As a writer, I was just putting my experience with Cluster Headaches into words on my blog. In the course of writing, I did some research and found this site. Here is the post I came up with - http://namedropacid.blogspot.com/2008/04/cluster-headaches.html I assure you I didn't come here to spam my blog, I just thought that my little piece could better illustrate what its like for me personally. Anyway, good to meet all of you, and I hope to learn more here on this site. Ryan |
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Title: Re: Who is who here to the newcommers Post by Charlotte on Apr 17th, 2008, 3:55pm Welcome aboard, Ccanniff and Ryan. Charlotte |
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Title: Re: Who is who here to the newcommers Post by jjslugdog on Apr 24th, 2008, 8:17pm http://www.geocities.com/slugdogmt/merosenfoxhippyhouseb.jpg That's me, JoJo, jjslugdog on the board, on the right, with James Rosen of Fox News at the "hippy house" in Crawford, Texas. My bride of 29 years is from Troy, Texas, and I lived in Texas for 33 years. I have 4 children, 3 boys and a girl. I guess I should say 3 men and 1 woman. 3 grandkids. All wonderful. My wife and I moved back to Alabama, where I'm from, in '03 when my youngest son joined the Marines. I began life as a clusterhead around 1979. My dad had 'em, used to watch him shoot morphine when I was a kid. They called them "histamine" HA's back then. I've tried every single thing for 'em that is out there, other than the imitrex stuff. I had my first MI in '93, before it came out, and that kinda put the quitotus on the vasoconstrictors. I have tried "alternative" things, yes, lucy in the sky, didn't work for me. I went chronic in '96, and got hooked on freakin' oxy for 5 years. got up to 200mg a day, chewing 'em up, with up to 10 lortab 10's for break-through. Getting off that stuff just about did me in. Did stop the HA's, though. I would like to hear about the kudzu, though, as there is no shortage around here. I could even can it for winter time. Found the board sometime in the '90's, and it was a life saver. Thought the only other person in the world who had 'em was my dad, and he had passed on by then. Love/hate being here. God Speed to y'all. ps. the old guy inbetween Rosen and me is Daniel Ellsburg, of watergate fame...... |
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Title: Re: Who is who here to the newcommers Post by torro2005 on May 1st, 2008, 6:42pm Hello everyone, I'm Gerard from Holland. Just added something here on a topic from Flipflop after registering at your site also like on OUCH in Holland. Try to deal with CH for about ten years now. Donn't have to explain further I guess. 47 years old. Working (luckely still..) in psychiatry. For the last 4 months 5 to 8 attacks a day. Getting a kind of desperate but over the years found some tricks besides Imigran-injections and did a lot of research that I like to share with you. And offcourse learn from you all also in our struggle to beat this torturing monster. Soon I'll be posting my whereabouts here and hope to get responds. I wish everyone all the strenght in those torturing, desperate hours wich we cann't explain to anyone but other ch's. It is called the most painfull experience a human can suffer but it must be also the most lonely one. For me that's very hard to deal with also. Thank you for sharing. Try to get some sleep again till the next attack comes. And I've only got half a Imigran left..Hope it's enough again. Goodnight and strenght for those who are awake also. Gerard |
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Title: Re: Who is who here to the newcommers Post by welshchipmonk on May 3rd, 2008, 6:36pm Hi I'm Suzie, married to Dave who is the CH Sufferer. We've been married for 21 years and have two brilliant kids - Tasha 20 and Gav 17, plus a house full of cats and dogs! From all I've read we've been really lucky because he's had these headaches from hell for the last month and was diagnosed with CH last Monday. Mind you he had a brain cyst which was operated on in Charing Cross 21 yrs ago (a month after we were married!) and these current headaches were as bad as then so I've been hounding the poor GP who's just taken over the practice and we've been down to A & E three times as I knew this was not "just a headache". He's on loads of stuff at the moment which is a problem as he takes a lot of medication for high blood pressure, depression and Menieres Syndrome, mostly as a result of the damage done by the cyst, but we are hoping that the brilliant neurologist who we see again on Tues will explain to our GP that CH's are not just random headaches like migraine - as the GP was loath to give a repeat script for the Sumatriptan yesterday. Having spent the last 3 days reading the threads from this FANTASTIC site, we're going to try and get him to give Dave O2 so there isn't such a conflict in meds and AE's. Having seen what Dave goes through for only such a short time, my heart goes out to all of you, and I think your battles to cope with this horrible illness and the way you support each other is truly heroic. Thanks to all of you for the time you've taken to share your experiences, which have helped to make the road of discovery into CH so much easier for us. Suzie & Dave |
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Title: Re: Who is who here to the newcommers Post by Charlotte on May 3rd, 2008, 7:33pm I am sorry you had to find us, but welcome aboard, Suzy and Dave, and Gerard. Charlotte |
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Title: Re: Who is who here to the newcommers Post by cbaker on May 14th, 2008, 8:26am Hi, My name is Colin from Manchester, England and have been a CH episodic sufferer (twice a year for 4 weeks)for 19 years. I was diagnosed correctly after initial panic visits to specialists and neurologists and have only been taking beta blockers (Inderal) from the first diagnosis. I have been in remission for 2 yrs until 5 weeks ago (and counting, hoping an end is just around the corner) and only then did I discover the web site. I had hoped they had run their course, but it was not to be. Only now have I seen that there are more treatments available and that there are so many more sufferers with exactly the same symptoms. I don't think the UK has quite caught up with the treatments available yet, as I suspect there is a strong reluctance to prescribe. I'm going to see this cycle out with the beta blockers and if I am unfortunate enough to hit another cycle, I'll be looking at more effective preventative and abortive treatments. Stay Happy ! |
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Title: Re: Who is who here to the newcommers Post by chefjohn on May 14th, 2008, 8:58am Dear Colin Sorry you had to find us but welcome. There are other options out there. You will find that there is a wealth of info out here and there are many people from the UK that are more familiar with your options than I am here in the US. You will hear a lot about Oxygen out here and it is worth looking into. For now just read, read, read everything you can out here and acquire as much knowledge as you can. Because of the nature of CH you will find that many doctors may be lacking in knowledge of this. Yesterday I went to a doctor and it helped me immensely by being well informed. Anyway wishing you many pain free ( PF ) days ahead and feel free to ask for help out here.....your not alone here. Peace, John |
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Title: Re: Who is who here to the newcommers Post by judyjudyjudy on May 14th, 2008, 12:48pm Hi, I'm Judy from Kansas. I've been CH for 25 years. It's good and bad to be back on the board....bad because I "need" to be here (in cycle, need support). But good because I'd forgotten how good it feels to listen to another human being who is experiencing the same thing I am! Last night I laughed and cried as I once again had that feeling you all have had.....that I'm not alone" feeling. I saw some of the youtube videos mentioned....it was eerie! I was thinking, "Wow....I do THAT!" and it was actually kinda comical. Like, why do we hold rags to our heads? It doesn't help! But we do it anyway! That was the common theme I was in so many videos. And in some sick, twisted way, it made me amused at myself. It also amazed me how we all learned "the dance" all on our own, without the assistance of a choreographer. Just comes naturally! Thank you for being here, Judy |
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Title: Re: Who is who here to the newcommers Post by Transamdoug on May 14th, 2008, 11:26pm Hello all, glad to find you, sorry to be here! My name is Doug and I am just coming to grips with the diagnosis of CH. Been episodic for 3 years but had last year off. Seem to be paying for it this year, in month 3 and going strong, the beast is hungry this year. On prednisone last couple days so I'm ok right now. Just so happy to find this sight, it means so much to give and get support from others just like us. Can't wait to meet you all and I will apologize right now for what I'm sure will be many stupid questions to follow, I plan on being very active here sharing my success and failures with you and asking lots of questions! |
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Title: Re: Who is who here to the newcommers Post by welshchipmonk on May 15th, 2008, 5:02pm I don't think the UK has quite caught up with the treatments available yet, Hi Colin, we were quite lucky to get a neuro guy who knew about CH, but I was then pointed in the line of www.ouchuk.org and we became members last week, I rang their helpline this week and think Dave might have a "cousin" of CH rather than CH, so we are seeing our GP tomorrow to try and get a referal to Queens Square Hospital in London, which is where the CH specialists seem to be based. You may already know all this but if not give OUCH a look and contact them, they have been fantastic to us. All the best and I hope your cycle comes to an end soon. Suzie |
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Title: Re: Who is who here to the newcommers Post by LostAgain on May 15th, 2008, 8:53pm Hi everyone, I've been a CHhead since I was about 16 and I'm 21 now. Got diagnosed when I was 18, my GP is awesome and decided to try and look up the headaches in a medical book. I feel like the youngest person on the boards. Haven't seen anyone younger anyway. Usually had CHs in the fall winter time, but it flipped on me last year when I got them in the summer, and it went away the second football started this last year. Found this site during that time last summer. Been in cycle for about a month and a half now. Can't take Calan (Verapamil) because it kills my endurance when we are trying to get to our in season shape. Been using Imitrex which works perfect but makes me feel lackadaisical afterward. Just started on the O2 and it seems to help during shadows and sometimes afterward. I love this site and all of you here. It really is all I got for support in cycle. Avi P.S. How do I add a pic?? |
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Title: Re: Who is who here to the newcommers Post by tonyonly on May 17th, 2008, 1:36pm Cheers mates, Tony from Finland. Been living with cluster headache for 15 years now. As it seems to be in many cases it took a long time to get properly diagnosed. Hate to say it but pain cycles tend to get worse every time, with me that is. I think I'm getting a bit desperate and searching out every possible internet forum for help...but this one seems like a gold mine. I was a bit surprised I didn't see a single post mentioning cortisone for medication, it seems to be rather usual at least here in Finland. It has always broken my pain cycle or at least made it very bearable up until this year. I have been eating it a LOT though, in my opinion my body has just got used to it no matter what the doctors say. At the moment I keep telling myself this "it will go away, it will go away" mantra day-to-day. With these I seem to survive: (up until this year) cortisone for breaking the cycle oxygen for attacks imigran for attacks verpamil for preventing attacks (I don't really know does this do anything to me but am not willing to any chances and dropping it) other painkillers & sometimes melatonin for the night Feels as if I've tried pretty much everything but when it comes it comes and it has it's own schedule when to stop. Working is pretty tough right now, 2-4 attacks per day. Medications mostly prescribed for epilepsy seem to be often prescribed for CH sufferers here, I have only tried one and it had zillions of side effects - might be hard to imagine that with them the condition was even worse than cluster headache but it was. Keeping my fingers crossed. So many posted pictures, mine is here (http://treffit.suomi24.fi/index.jsp?layout=default&object=album&userId=231926) Wishing as pain-free times as possible to everyone :) |
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Title: Re: Who is who here to the newcommers Post by sandie99 on May 17th, 2008, 4:52pm Hi Tony! :) Welcome to ch.com! :) I'm the resident Finn in here (oh yes, I'm here almost daily) and I'm so glad to see another Finn joining the family; there's few of us in here. Now, I've lived with the beast a lot shorter time than you have. I've been a chronic and now episodic. I quit using meds after being in remission for 11 months. This is the third cycle I'm using just energy drinks (hits), caffeine tablets(hits), taurine-guarana chewing gum(shadows), ginger ale (shadows) and ice as my ch treatment kit. Works for me! Sorry that you're in pain, wishing you PF time shortly, Sanna |
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Title: Re: Who is who here to the newcommers Post by habanero on May 18th, 2008, 12:37pm hello everyone my name is mikko and i'm 36 and from finland, europe too. had CH every once in a while since 1994. i use sumatriptans and hot sauces to bother the pain. espresso coffee and smoking helps too occasionally. at the moment i still got about 4 to 6 weeks left. then it should be over for now. m |
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Title: Re: Who is who here to the newcommers Post by sandie99 on May 19th, 2008, 5:40am Hi Mikko! Warm welcome to ch.com to you as well! :) I'm sorry that you're in pain, but I'm glad it brought you here - this is the best place for information & support for clusterheads. Wishing you PF time, Sanna |
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