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Title: Look what I found... Post by pattik on Apr 19th, 2005, 4:54pm Jonny's first post (and he seemed so innocent) ;;D http://www.clusterheadaches.com/wwwboard/messages/25950.html |
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Title: Re: Look what I found... Post by Frank_W on Apr 19th, 2005, 4:59pm Awwww.... |
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Title: Re: Look what I found... Post by Jonny on Apr 19th, 2005, 5:01pm It's kinda hard to be mean with tears in your eyes :'( It was a long journey home but I had made it ;;D |
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Title: Re: Look what I found... Post by Bob P on Apr 19th, 2005, 5:01pm And what a nice bunch of responses to his post. |
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Title: Re: Look what I found... Post by Frank_W on Apr 19th, 2005, 5:04pm on 04/19/05 at 17:01:30, Jonny wrote:
I'm glad, bro'. Glad for all of us, really... |
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Title: Re: Look what I found... Post by nani on Apr 19th, 2005, 5:04pm on 04/19/05 at 17:01:30, Jonny wrote:
I know that I'm sure glad you did!! Love you, lil bro :-* |
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Title: Re: Look what I found... Post by pattik on Apr 19th, 2005, 5:06pm Everything they've all said, and more [smiley=hug.gif] |
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Title: Re: Look what I found... Post by LeLimey on Apr 19th, 2005, 5:12pm I'm pretty glad you are here too.. :-* |
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Title: Re: Look what I found... Post by Jonny on Apr 19th, 2005, 5:19pm Why dont everyone go find their first post or guestbook entry and post it here, should be some nice reading. Sorry Patti....not trying to hijack your thread....just dont want this to be an "All about jonny" thread Now go find your posts folks!!! ;;D |
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Title: Re: Look what I found... Post by pattik on Apr 19th, 2005, 5:25pm I started on the old board as "Patricia".. Posted by Patricia (152.163.207.77) on November 19, 1999 at 20:21:46: This autumn was the first time in over 15 years that I have gone completely without my yearly autumn clusters (which usually go for four to five weeks). After reading about a possible seratonin connection over the internet, I researched a natural version of Prozac--L-5-hydroxytryptophan (nicknamed 5-HTP). I have always felt that the waning daylight of autumn was somehow involved, along with the general stresses of the holiday season. I began taking 5-HTP twice a day since mid September, since natural products take longer to take effect. So far so good--just a couple of very minor headaches. Edited to add: This board and the folks here have been a Godsend to me. I've found friends to share ideas and much information to help with the pain. |
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Title: Re: Look what I found... Post by Jonny on Apr 19th, 2005, 5:28pm on 04/19/05 at 17:25:34, pattik wrote:
Well slap my ass!!!!.....LMAO I did not know that....I thought you just showed up recently ....LOL I guess you have known me for some time :o |
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Title: Re: Look what I found... Post by Bob P on Apr 19th, 2005, 5:35pm Quote:
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Title: Re: Look what I found... Post by BobG on Apr 19th, 2005, 5:45pm Back on the last century when I first found this site internet message boards were a little crude. We had to write our message and mail it to DJ. Then he would type it in his Texas Instruments computer, transfer it to a cassette tape and forward it to a programmer who could post it for us. ;) |
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Title: Re: Look what I found... Post by Margi on Apr 19th, 2005, 5:53pm BobP and Jonny are just newbies..... here's my first post. BobG was quick to caution me about the use of welder's oxygen. He's an oldtimer though. ;) Posted by Margi on October 30, 1998 at 15:18:53: My husband has been suffering from CH for 20 years and we have yet to find a doctor that will treat him for it. He has been treated for sinusitis (penicillin), migraines (imitrex - quickly built up immunity), and pain relief (toradol, ferrinol, etc.). I have tried treating him with feverfew (which lessened the severity but didn't avert the attacks and you have to take it for a long time before you see results). Right now, because of this site we are trying the water therapy and inhaling pure oxygen (that we have with our welding supply but can't seem to find a doctor who will prescribe it!). He is getting some relief (his first sleep in over a week!) - thanks, Jerry! He has been on a waiting list to see a neuro at the end of November, but I doubt he will still be in this cycle by then so he probably won't want to attend only to be sent for more cat scans, bloodwork, etc., etc. He is on a waiting list for the headache clinic at the Foothills Hospital. Oh yes, that waiting list is ONE YEAR LONG!!! I guess we'll keep doing what we're doing, but it would sure help if anyone knew of a doctor in the Calgary, Alberta Canada area that believes in Clusters and won't put him through any more "lab rat" testing. Any help would be greatly appreciated. My heart goes out to all you CHers and your support people. Thanks for listening. here's BobG's response to me: Posted by Bob G on October 31, 1998 at 04:15:36: In Reply to: Wife of a sufferer - frustrated with no medical assistance posted by Margi on October 30, 1998 at 15:18:53: Please be careful with the oxygen that came from a welding supply store. There is a big difference between welding oxygen and medical grade oxygen. wow, we've all learned SO much since then!! |
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Title: Re: Look what I found... Post by high_commander on Apr 19th, 2005, 5:54pm Quote:
Quote:
Wasn't that long ago, but I had been lurking for at least a year before that.... lurking again lately...have some other health issues that my prevents were masking...dealing with them now...hopefully i'll be healthy by summer, just in time for the next cycle... ::) Danielle |
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Title: Re: Look what I found... Post by Frank_W on Apr 19th, 2005, 6:20pm March, 2004 (This was when my azzhead neuro diagnosed me with "cluster migraines." ) ::) Hello, everyone. I can't tell you how pleased I am to find this board... I have suffered for the past four years from cluster migraines. I thought they were allergy related. My cycles usually come every autumn and last until mid-winter, but this time, a new cycle started two months ago, and this one is the worst one yet. Pain so bad that I'm banging my head on my desk, crushing my palm into my right eye, sobbing in pain, and begging for death. I've been through two wars, been stabbed, burned, beat up, had my face ground to pulp in bike wrecks.... NOTHING is worse than a cluster headache. I'd rather have ALL of these things happen, than to deal with clusters. No matter how cultured, how civilized, how learned we are, pain turns us all into raving animals with no logic, reason, or desire for anything but relief. This most recent cycle brings four and five clusters each day, almost like clockwork. I can count on having one at mid-morning, and I can count on having one at 10:30 at night. I also get one around midnight, and another around 2 a.m. The others blindside me and come on with little or no warning, and feel like someone is jamming a screwdriver into my right eye, and twisting it a few times real hard. In desperation, I finally made a visit to my neurologist yesterday. He put me on 500 mg of Depakote. Today is the first pain-free day I've had in over 6 weeks. Anyway... Glad to find this group, and I look forward to participating. -Frank |
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Title: Re: Look what I found... Post by E-Double on Apr 19th, 2005, 6:40pm on 06/14/04 at 09:08:27, E-Double wrote:
Hmmmmm so what's changed.... 1) Now diagnosed 2) Now use meds 3) Now 31 4) Now married 5) Now reached 1 long yr dealing with this Chit...... NO complaints!!! If it weren't for finding this place 1-4 would definitely not have happened and I'm sure I wouldn't have lived long enough to enjoy this yr. and the rest of my life!! Thank you and tons of love! Eric |
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Title: Re: Look what I found... Post by mynm156 on Apr 19th, 2005, 6:46pm If we only knew then what we know now.. [smiley=bash.gif] Nothin but love baby. hahahahah |
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Title: Re: Look what I found... Post by BobG on Apr 19th, 2005, 7:17pm on 04/19/05 at 17:53:41, Margi wrote:
LMAO Margi. I have since changed my outlook about welders O2. I try to lean to the side of caution when new suggestions for treatments come along. The use of welders O2 was new back then. Then we had “new” shrooms, pepper-up-the-nose, melatonin, DannyBoy’s free trip to Africa and kudzu. One time we had a suggestion to “spit in a glass of water and see how the flem floats”. There’s been a lot of “new” treatments over the years. Be careful out there folks. |
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Title: Re: Look what I found... Post by Jonny on Apr 19th, 2005, 7:24pm on 04/19/05 at 19:17:23, BobG wrote:
And you were oh so right to be cautious Bob.....unless you deal with welding 02 you dont know what you are getting. You did good Bob :-* ;;D |
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Title: Re: Look what I found... Post by pattik on Apr 19th, 2005, 7:25pm on 04/19/05 at 19:17:23, BobG wrote:
[smiley=crackup.gif] [smiley=crackup.gif] |
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Title: Re: Look what I found... Post by lilboo on Apr 19th, 2005, 10:50pm Hi there, I actually found my first post. I've been coming here for several years, so many things have happened since then like the death of my best friend 7/17/00 then my dad 1/05/01. My husband had a heart attack this past November :o he's doing much better now after having a quadruple bypass. I try to stop by on a daily basis to see if anything new has popped up. I get a real kick out of most of you, this site really makes makes my day. Thank you for being here. Maybe I'll start talking more. Here's my first post: Posted by Kathy (205.188.198.59) on April 10, 2000 at 00:15:08: My husband has been getting these CH's for about 20 years and he has been on most of the meds I've seen here. I am new to the site and was hoping to find something new that might help, I have learned to leave him alone when he has these episodes, although they can last for days at a time. I used to think that the pain couldn't possibly be that bad and then I started reading the material in this site and now I have a better understanding of it all, thank you and please keep looking for a cure no one should have to suffer. |
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Title: Re: Look what I found... Post by Charlie on Apr 20th, 2005, 3:17am Here's mine from August, 2000. Lots of crackpots were posting at this time. Hi Robin: I'm 54 and haven't suffered in many years (probably because of age and anticonvulsants (depakote) but when I was first diagnosed with these wall-bangers, I was taught a biofeedback technique. I was skeptical but it did help during the attacks. As these are vascular, I was told to "think" of redirecting bloodflow from behind my eye, down my neck and into my arms and hands. As my hands warmed, the throbbing gradually subsided behind my eye. It takes intense concentration, a cool, dark room, and for me no "help" as it just gets in the way. This kind of thing is fairly easy to learn and I found it lessens the severity of the attacks as well as duration and allowed me a little sleep. I also had good results with Inderal but I no longer need it. All the best--Charlie Strand How things change and stay the same. Fun stuff. Charlie |
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Title: Re: Look what I found... Post by Renee on Apr 20th, 2005, 5:13am I believe I had posted to other's posts prior to this and never really had a "formal" first post introducing myself but here is the first post originated by me: Quote:
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Title: Re: Look what I found... Post by ExplodingEyeBall on Apr 20th, 2005, 9:05am I wouldn't know where to start looking. It's probably just a bunch of incoherant babbling any way. |
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Title: Re: Look what I found... Post by Kim Y. on Apr 20th, 2005, 10:06am My Guest post: Wow I am not alone. Today I carried my head higher just knowing there was others out there like me. Here goes my first attack was at 27 while attending LPN school went to the ER once and suffered the remainder of the time it started April 2004 the most intense part of the semester and continued through August and slowly ended. By Gods good grace I got my LPN and started at a Nursing home and this November toward the end bamb it was back. I cringed at all the warning symptoms I knew it was coming. Small pains to left side of my head, pressure behind my L eye, tearing L sided sinus congestion, and neck pain. When the ice pick came at my head all I could do was reach up and push as hard as I could to make it stop and those weren't the wappers. Man when it grabed and release and few seconds if not minutes it would grab again going on for 2-3 hrs and then after shocks all night and total exhaustion the next day. My husband has been so sweet even though there is nothing he can do. My coworkers as good as there intensions might be I am tired of the question "How are your headaches doing? Do you have a Headache today?" Thanks for this sight and reading my message. The DX of CH is what sent me looking for this place. You have all helped give me knowledge to present to the Dr. ideas and she has been open. O2 (still waiting for insurance to approve) Melatonin (this is a God send mind you) Understanding Verap. helped as well. I stopped it to try Kudzu but may be going back to it and a hire dose. Still getting hit pretty bad we are on day 7. Dr. appt. next week. I can't believe how much better this go round has been compared to the last when I didn't have knowledge of different meds not to mention the support of others who know what I am going through. Thanks, PF wishes. Kim |
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Title: Re: Look what I found... Post by TxBasslady on Apr 20th, 2005, 10:13am I am a newbie from Tx « on: Sep 5th, 2003, 2:35pm » -------------------------------------------------------------------------------- I have not a clue as to if I am doing this right. Have been reading in this forum and on the Ch site for a year and 1/2. That was when I had my first visit from this beast. Have only had sporadic visits till Aug of this year. But have had only 3 pf days since August 11. This is undoubtedly the worst thing I have ever experienced. I have had an MRI to satisfy myself and my husband that this is not life threatening. My doctor has give me a rx for Frova. My attacks are always at night...usually within 1 to 2 hours after I go to sleep. I have the typical type symptoms that most all of you say you have(I have sat here for hours reading your posts). My attacks are on the right side of my head, my right eye is totally involved and the area behind my ear. It is as if my scalp is being ripped from my head. My husband has been a great supporter and is always the first one up....he runs to get my meds, then sits w/ me and applies cold icey compresses to my eye and head area. The Frova is the only medication I have taken, and it does reduce the time of the attack. It does nothing for the intensity, but from the time I take the medication to end of attack is from 13 to 18 minutes. We sit together, well he sits and I rock like a baby, crying w/ the writhing pain I feel in my head. I plan to see a neurologist, or from what I have read from all of you, that seems to be the best. I have felt most all of the emotions that you all have felt...including that death must be better than this pain. However, I have 3 wonderful sons, and grandchildren, and I know that there is a better solution than death. So far, I have had no daytime attacks, but the nightime attacks have become more unbearable. So many of you seem to have this 10x's worse than I. I feel as though I am held prisoner by this beast. I am an avid bassfisherman (or fisherlady...lmao) and I am afraid now to show up for my next scheduled tournament, in fear that I will have an attack and not be able to handle it. I am retired from Law Enforcement, and had a great 8 years of fun and fishing before this beast became a daily part of my being. I feel helpless. But today I decided to join this special group in hopes that together I can at least cope w/the feelings and the pain. I hope that in some small way I can help someone else. I can't seem to help myself much. But you guys seem to be a great bunch of folks. There's evidently no cure for this...but I welcome the support. I will always be so grateful....for all of you, and for this site. I will never forget the love and support. As ...jonny said, it's thru tears that I go back and read this. I was taken back to the utter desperation that I felt when I joined this group. I found love and friendship here...and alot of hope that didn't exist. Thank you... Love to all my brothers and sisters, Jean |
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Title: Re: Look what I found... Post by Frank_W on Apr 20th, 2005, 10:18am [smiley=hug.gif] |
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Title: Re: Look what I found... Post by Tiannia on Apr 20th, 2005, 10:59am on 09/03/03 at 12:51:41, Tiannia wrote:
This site has been my saving grace so many times. It is amazing how just knowing that you all are here helps to fight. That I know that others have the same fight I am hainvg and have survived. Blessed Be, my family. PFDaN's -Tia |
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Title: Re: Look what I found... Post by sandie99 on Apr 20th, 2005, 12:15pm Jonny as a newbie... Imagine that. I thought it was a nice post, though. :) |
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Title: Re: Look what I found... Post by ExplodingEyeBall on Apr 20th, 2005, 12:17pm From April 15 2004 --- I just recently started talking to a doctor after finding some information about cluster headaches. He is pretty convinced that this is waht I am suffering from. He pretty much diagnosed me after I told him that it feels like somebody is trying to pry my eyeball out of my head and that I sometimes literally beat my head against the wall during an attack. My question is if the focus of the pain moves around during an attack. The pain with me is always on the right side but, depending on which way I have thrown myself to try to get comfort, the focus of the pain will sometimes move from behind my eye to just above my right ear or to the back right side of my head. Sometimes, it even feels like my teeth are going to come shooting out of my head. The pain always stays just as intense but simply moves to a different location Is this common or is a sign of a different class of headaches? I am so happy to find a place like this where other people actually understand the pain of these headaches. I think this is my first post. http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=chspecific;action=display;num=1082034210;start=0#0 |
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Title: Re: Look what I found... Post by ClusterChuck on Apr 22nd, 2005, 7:16pm Pardon me while I brush off all the cobwebs ... Been spending a lot of time in the archives ... Took me a long time to find this, but this looks like my first post: on 08/13/03 at 21:15:21, ClusterChuck wrote:
I always enjoy going through the old posts. I keep wondering where many of the people have gone and how they are doing. Chuck |
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Title: Re: Look what I found... Post by ghost62 on Apr 22nd, 2005, 7:23pm on 01/27/05 at 18:02:54, ghost62 wrote:
well here is mine I know it hasn't been that long ago |
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Title: Re: Look what I found... Post by Jonny on Apr 22nd, 2005, 7:29pm on 04/22/05 at 19:23:34, ghost62 wrote:
The length of time and the number of posts dont matter, man! Its all about helping the family....a joke to make someone smile, your experience with CH or anything a Ch'er can relate to is why we are here. In my book you are doing just that....helping the family!! |
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Title: Re: Look what I found... Post by ClusterChuck on Apr 22nd, 2005, 7:54pm To quote Don: Jonny, you suck !!! Chuck |
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Title: Re: Look what I found... Post by Drk^Angel on Apr 23rd, 2005, 12:51am Well... My first post is gone to the bygones... Lost in the great board crash of 2002... But I think I remember havin' to wait until my second post before anyone told me to STFU... :P PFDAN.................................... Drk^Angel |
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