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Title: Ok, Now lets talk CH.COM...... Post by jonny on Dec 11th, 2003, 6:22pm Ok,....Enough of the fun stuff....sex, war, religion ;;D What I want to know is where were you before you found CH.COM, by this I mean: Were you diagnosed? Did you have a Neuro? Did you have meds? Did you think you were alone in this pain? You get where im going with this...................................................................... Part two: How has CH.COM helped you, by this I mean: Got meds? Got a Doc? Again, you know where im going with this..................................................................... Part three: (Easy) How did you find CH.COM? And you lurkers out there....you could at least answer part three. Thank you for your time ..........................jonny |
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Title: Re: Ok, Now lets talk CH.COM...... Post by BobG on Dec 11th, 2003, 6:28pm What I want to know is where were you before you found CH.COM, by this I mean: Were you diagnosed? Yes Did you have a Neuro? Yes Did you have meds? yes Did you think you were alone in this pain? Yes Part two: How has CH.COM helped you, by this I mean: I have learned many things. I am not alone. I am not a freak of nature. I now know ALOT more about drugs, O2 and alternative treatments for clusters. Got meds? Already had some. Got a Doc? Already had one. Part three: (Easy) How did you find CH.COM? Surfin' Thank you for your time. |
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Title: Re: Ok, Now lets talk CH.COM...... Post by Paigelle on Dec 11th, 2003, 6:30pm Okay Jonny here we go! I have had CH since I was 10 yr old. I am episodic. I wasn't officially diagnosed until I was 17-18 yrs old. Then I was told to take a Valium and deal with it. I haven't ever had a neuro. Have been fairly fortunate in getting decent GP. However, I will be seeing a neuro in January. For about 8 years no meds. I would try aspirin or whatever Mom gave me. After diagnosed I was given Valium and Midrin. Neither of which helped. No, I never thought I was alone, my grandmother and mother both suffer. Part 2 CH.com has helped me understand that more people are feeling the same way I am and that it is not just me that certain meds don't work on. It is the greatest outlet ever. You make great friends here and you have the greatest support ever for a "disease" that no one understands. It has helped me with meds. I discovered the Prednisone trick here. People are always willing to express their opinions about the meds and how it will or won't help. Seeing a neuro in Jan. Part 3 Yahoo search for cluster headaches. |
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Title: Re: Ok, Now lets talk CH.COM...... Post by Rick_K on Dec 11th, 2003, 6:37pm Were you diagnosed? Yes Did you have a Neuro? Yes Did you have meds? Yes Did you think you were alone in this pain? Very much so Part two: How has CH.COM helped you, by this I mean: It is wonderful to have people to talk to who understand Got meds? Already had meds and O2 Got a Doc? Had a doc, but just found a new one thanks to this site Part three: (Easy) How did you find CH.COM? From the OUCH site !!! |
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Title: Re: Ok, Now lets talk CH.COM...... Post by jonny on Dec 11th, 2003, 6:37pm BobG, I mirror your post. .............................jonny |
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Title: Re: Ok, Now lets talk CH.COM...... Post by thomas on Dec 11th, 2003, 6:38pm Yes. I was diagnosed. Yes I had a neuro. Yes I had meds. No, one of my best friends has ch (why he doesn't come around here baffels me). Ch.com kept me from killing myself. That's the biggest help it has given me. I've got to read other people's results with various treatments and meds. Thats the 3rd biggest help. I've got to talk to all of you that's the 2nd biggest help(sorry it couldn't be #1 - but living has to be first). I did a search on excite for "cluster headaches" and this is one site that came up that made me want to go on living. Your welcome jonny I've always got time for you bro. |
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Title: Re: Ok, Now lets talk CH.COM...... Post by 9erfan on Dec 11th, 2003, 7:32pm Were you diagnosed? Yes Did you have a Neuro? Yes Did you have meds? Yes, but nothing that worked. Did you think you were alone in this pain? Yes You get where im going with this.................................................................... .. Part two: How has CH.COM helped you, by this I mean: Got meds? Didn't know about the difference between a regular oxygen mask and & rebreather mask until I found this site. Didn't know about increasing dosages of Verapamil. Didn't know about water therapy or shrooms. This site saved me by giving me hope. I thought I was at the end of the rope because I had tried "everything out there". But realized after reading the board that maybe I just hadn't found the right combo of meds for me. I discovered that I wasn't alone, that I wasn't losing my mind, and the best part was that I discovered the caring & support of complete strangers. Got a Doc? Again, you know where im going with this.................................................................... . Part three: (Easy) How did you find CH.COM? Typed "cluster headaches" in a search engine one day. |
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Title: Re: Ok, Now lets talk CH.COM...... Post by Woobie on Dec 11th, 2003, 7:43pm ok - jonny.......... Were you diagnosed? yes, diagnosed, came home - did a search and VOILA! all within an hour Did you have a Neuro? nope Did you have meds? just the scripts the dr wrote me - weren't filled yet.. and one turned out to be a med that isn't for clusters, we found out Did you think you were alone in this pain? absolutely Part two: How has CH.COM helped you, by this I mean: Got meds? yes, and the correct ones... and some O2 - thanks to the supporters here on my first day here....... Got a Doc? yep Part three: (Easy) How did you find CH.COM? GOOGLE Thank you for your time I guess I basically answered for Ramon - but I was here FIRST!! ;;D While he was in pain - I read, and read, and read some more - posted, made phone calls, and tried to figure it all out. I was on this site for over a week before Ramon finally checked it out. so how has CH.com helped us? Cannot count the ways....... thomas said it right === getting to read the results of others with meds and surgerys... INVALUABLE!!!! The friendships made........ priceless........ and the fights.. ........ geesh - the drama around this place!!!! [smiley=furious.gif] i think that's all for now... tina :-* |
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Title: Re: Ok, Now lets talk CH.COM...... Post by Little Deb on Dec 11th, 2003, 7:48pm What I want to know is where were you before you found CH.COM, by this I mean: Begging for mercy at the feet of the beast. Found it July 2002. Suffered CH for the last 25 years. Were you diagnosed? yes, a few years ago Did you have a Neuro? had just moved here, went into cycle and did not have a neuro here. (NC) Did you have meds? not on hand Did you think you were alone in this pain? Basically, yes. You get where im going with this.................................................................... .. Part two: How has CH.COM helped you, by this I mean: Feel a sense of comfort knowing I am not alone and that someone else understands the pain. Got meds? I have meds now, and have learned alot about what other people use, in case mine don't work. Got a Doc? Just found an excellent neuro last week by accident. Again, you know where im going with this.................................................................... . Part three: (Easy) How did you find CH.COM? went into cycle, and since I had recently learned how to surf the net with high speed internet, decided to look up cluster headaches and WOW! CH.COM!! Now am happy to say I have met my first few clusterheads and can't wait to meet more. Also can't wait to go to the next convention!!!Love y'all! |
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Title: Re: Ok, Now lets talk CH.COM...... Post by Prense on Dec 11th, 2003, 7:53pm I was diagnosed in 2000...I found CH.com early this year...CH.com was the first in a list when I ran a search through Yahoo for "Cluster Headaches". Prior to finding CH.com, I was on a low dosage of verapamil and had maxalt for an abortive...neither was doing anything. I had not seen any neuros at that time and had never had any tests run. I did not feel "alone" with this prior to CH.com as I met someone with CH about 8 years ago, and I had a pretty good idea about what it was. With the assistance from everyone here, I was able to gain control over my medical issues. Shortly after visiting this site, I saw my first neuro...when I discovered he sucked, I pressed on to my current neuro. I have still not found any preventative that will put a dent in my attacks, but I was able to get O2 and imitrex injections prescribed. Those gave me a sense of control over my life again. I have been chronic since 1993, but the intensity and frequency soared starting in 2000...words cannot describe what DJ and what he has put together along with all the great folks here have done for me... Excellent thread Jonny! Chris |
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Title: Re: Ok, Now lets talk CH.COM...... Post by Melissa on Dec 11th, 2003, 8:12pm Were you diagnosed? yep Did you have a Neuro? nope Did you have meds? nope Did you think you were alone in this pain? yep Part two: How has CH.COM helped you: Made a lot of friends, who I now feel like are my family, who understand and empathize with my pain. Also introduced me to treatments which make my cycles a lot more sane. Got meds? yep Got a Doc? yep Part three: (Easy) How did you find CH.COM? surfing the net |
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Title: Re: Ok, Now lets talk CH.COM...... Post by jonny on Dec 11th, 2003, 8:14pm This is what im looking for folks.....stray away from the questions all you want......im looking for what you felt before and after you found CH.COM. Really great posts so far folks. .........................................jonny |
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Title: Re: Ok, Now lets talk CH.COM...... Post by Paigelle on Dec 11th, 2003, 8:40pm I have to add something here. One of the greatest things about this site is that since we moved to NC, I have been alone and this site has kept me sane through my cycle. It is horrible that we are all suffering through this, but if we weren't cursed with CH we would have never met each other. |
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Title: Re: Ok, Now lets talk CH.COM...... Post by Kirk on Dec 11th, 2003, 8:41pm Allways with the fucking questions eh Moriarty. 1. I was at the VA an ENT was the one to figure it out. Only took 20 years 2. Neuro Immediately thereafter 3. No Meds that worked. Found about them here. Then got them. 4. Intellectully I knew there were other. Emotionally nope. That has changed since I arrived here. Unless you all are a manifestation of my seriously deranged mind. Its alright if you are, I can live with that. You don't have to tell me. 5. CH.COM has definetely helped me get the right meds. The rest I am under the delusion I had under control. 6. How did I find this place? Don't recall. Maybe Google. Possiblyy from the command line with $grep /*clusterheadaches. perhaps you're really just a file in /etc/share. No matter either way I'm damn glad you're here. If you are really here so to speak that is.......... TTFN [smiley=cool2.gif] |
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Title: Re: Ok, Now lets talk CH.COM...... Post by CHmess on Dec 11th, 2003, 8:53pm Well, this is how I felt before and after I found CH.com: I was scared to death before I found this site! I definitely thought I was ALONE! I thought they would never end, that I was some kind of freak. Where did these things come from? Why now? What did I do to deserve this? Went to the ER and was diagnosed... Next day, got on "Google Search" and punched in Cluster Headaches - this was the first site on the list - Full of info and GREAT people! It blew my mind how many members this site had. So many people suffer yet no one (around me) has ever heard of them. Thanks to this site I know that I am NOT ALONE! I am so happy that I stumbled on to this close-knit family that welcomes you with open arms and lets us "new comers" snoop around and learn all we can! I'm not scared anymore. I think this web-site has been a life saver for all of us whether we know it or not! I fully understand why some would contemplate suicide (my Dr. knows of several who have followed through) another reason why I am very thankful for my 3 beautiful little daughters (my other life savers) - something to focus on to get me through this. I just pray they NEVER have to feel this pain! Let ME take it for them!!!!!! |
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Title: Re: Ok, Now lets talk CH.COM...... Post by jonny on Dec 11th, 2003, 9:00pm Thank you CHmess, that is what im looking for. Stay strong!!! ..................................jonny |
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Title: Re: Ok, Now lets talk CH.COM...... Post by 5-string on Dec 11th, 2003, 9:20pm What I want to know is where were you before you found CH.COM, by this I mean: Alone,no meds, nothing other than thinking it was some form of migraine Were you diagnosed?...yes Did you have a Neuro? ...no Did you have meds? ..no Did you think you were alone in this pain?...yes You get where im going with this.................................................................... .. Part two: How has CH.COM helped you, by this I mean: I know what the hell clusters are and they're treatable to some degree. Y'all showed me the door to the neuro. thank you. Got meds? ...yes Got a Doc? ...yes Again, you know where im going with this.................................................................... . Part three: (Easy) How did you find CH.COM? google search "cluster headaches" found this sight, did ALOT of reading and saying to myself "Son of a Bitch! There's a whole world of people with this." the whole time. thank you again. |
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Title: Re: Ok, Now lets talk CH.COM...... Post by stevegeebe on Dec 11th, 2003, 9:45pm Were you diagnosed? Not until about four years into the fun. Did you have a Neuro? Same as above. He was an ass hat. Now I got a good (woman) one. Did you have meds? Yes. Cafergot and Amerge. Alone? Yes. Got Meds? If I had asked, I know I would have had ya'lls help. Got Doc? No, but I have the knowledge to have us work together to find something that works. I found this site about three years ago. I was scared to post because of Jonny. LOL You folks make me laugh through the pain. You are some smart sum-bitches. That is what I like most. Thank you DJ....you are truely the nuts. Steve G |
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Title: Re: Ok, Now lets talk CH.COM...... Post by Not4Hire on Dec 11th, 2003, 9:58pm part 1 eventually... after three cycles did not, still don't no fuck, yes part 2 got what i need... and a forum to pass on what i know not that i can trust *now* ...but *did* have part 3 websearch, on a mountain in south america thank YOU for your time, bro... (and i hope ya got ya laddah up to clean ya guttah...heh) |
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Title: Re: Ok, Now lets talk CH.COM...... Post by Jimmy_B on Dec 11th, 2003, 10:20pm Diagnosed with Clusters back in 1986...So I guess that's before CH.COM. Had a Neurologist & Anesthesiologist. Was taking Inderal, & Ergotamine. I definitely thought I was alone...deep down I knew someone else must get these...but you still feel like you're the only one. CH.COM has definitely made me say Fuckeneh more....& also met some pretty strange, weird & wonderful people. Meds have changed to Verapamil & OXY IR & now all my visits are with my primary care Doc. Don't need to go to the neurologist unless I need to change meds. I found CH.COM a while ago...Just put Cluster Headaches in Google & up it came...didn't post for awhile but then posted under Marshall B. then Hound Dogg & finally Jimmy B. Lurked for about a year, before this. Peace, Jim |
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Title: Re: Ok, Now lets talk CH.COM...... Post by maggie_may on Dec 11th, 2003, 10:24pm What I want to know is where were you before you found CH.COM, by this I mean: I had been getting attacks every fall or every other fall since I was at least 16 (that's 10 years) Were you diagnosed? -- not yet Did you have a Neuro? -- was on my way to see him for the first time a few days afterward Did you have meds? -- just the occassional 5-6 tylenols/advils that never worked. my GP tried me on a bunch of narcs, muscle relaxers, and even maxalt (which didn't work) Did you think you were alone in this pain? -- Most definitely. Part two: How has CH.COM helped you, by this I mean: -- I was so glad to find this place to have so many people to talk to who knew what I was going through and that were willing to help me though the rough spots. Talked to a few people on here about getting the Imitrex shots over the nasal spray and how to stretch it out, and what a lifesaver that was! Even talked to people about o2 and got me some. Part three: (Easy) How did you find CH.COM? -- I was searching everywhere for any info I could find on CH before I went to see my neuro. Found the site from google |
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Title: Re: Ok, Now lets talk CH.COM...... Post by BlueMeanie on Dec 11th, 2003, 10:42pm Part 1 1. First Cluster started Sept. 1979. 2. I've only had 2 yrs. PF since. 3. Diagnosed by a lady Neuro from India in 1985. 4. Found a second Neuro in 1989 when I first tried O2. 5. Tried most all of the meds listed on this sight. Not any of the prevents listed works on me. 6. Met 3 other Clusterheads in the past 24 yrs. 3 months. 7. 1 of the 3 Clusterheads I know called me in 1999 to tell me about Imitrex. (Not a Doctor ?) Part 2 1. This sight has help tremendously emotionally. 2. Truthfully, I was hoping to find some sort of cure or meds to stop CH's. 3. Since coming to this site, I've tried Melatonin & Amerge. As always they only worked a few days before the Beast returned. 4. I don't see a Neuro anymore. My doc gives me the same meds as my Neuro would have. Part 3 1. Found the site searching the Web. Part 4 1. Thanks to ALL of YOU Clusterheads for allowing me to vent, rant & rage. I hurt all the time and never sleep more than 3 hrs. at any given time. 2. Normally my cycle ends within 10 weeks and I get by knowing it's almost over. 3. Today is the end of my 13th week. I'm very depressed right now especially because I had a KIP 10 last night with no meds and I really hurt today. 4. I don't think I would be around right now if I would not have found Clusterville. Thanks for listening fellow Clusterheads !!! |
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Title: Re: Ok, Now lets talk CH.COM...... Post by totka on Dec 11th, 2003, 11:36pm Were you diagnosed? - Misdiagnosed for 14 years Did you have a Neuro? - a lot of f_cking neuros Did you have meds? useless tranquilizers, painkillers Did you think you were alone in this pain? yes How has CH.COM helped you, by this I mean: ... Imitrex tip, good words How did you find CH.COM? Gooogle search |
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Title: Re: Ok, Now lets talk CH.COM...... Post by cootie on Dec 11th, 2003, 11:37pm Brad was diagnosed years ago (close to I'd say 18 or more)......after a year or so of not knowin WTF was goin on with no meds chronic He went to a regular doc....after the 'usual round' of meds it was sudgested he mite have CH and to seek a neuro which he did..... After the usual round of BS meds from the reg doc the neuro got him on imitrex and verapimil Feel alone ? How bout crazy.......never heard of such a thing as this or knew anyone else that did or went thru it........it was like a deep dark secret what we went thru CH.COM helped us find sum of the most COOLEST people with such a common BOND...........even tho we hang out with alot of friends and groups we NEVER met a group like this that instantly were pals without that usual awkward crap.....an expirience we won't soon forgit at the last convention in NY......who'd go that far to meet and hangout with a bunch of perfect strangers for so long anyhow. meds are still imitrex and verapimil....he's gonna try O2 next time and hopefully get sum help here with how to use it properly Our new doc is an internalist that has an interest and sum knowledge of CH and been great to work with and not have the wait to git in to see him or anything for help or meds............ Hey......thanks for 'YOUR' time not a lurker Pam |
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Title: Re: Ok, Now lets talk CH.COM...... Post by ckelly181 on Dec 11th, 2003, 11:58pm I got referred to a neuro in '86 after several years of GP and chiro visits. Diagnosed by a U of MN neuro, went on sansert. Found this place in the late 90s and found out more about c/hs, but didn't join in the fun. This fall, I came back to find an alternative to sansert for a lousy GP (who poo-pooed anything found "off the shelf on the internet") and "discovered" oxygen...my godsend. Done for about a month with this round and am staying around for some reason... :) Chris |
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Title: Re: Ok, Now lets talk CH.COM...... Post by Mastifflvr28 on Dec 11th, 2003, 11:59pm dang...read this after I posted in E's thread. I'll answer the questions, then I'll paste what I posted in Elaine's thread. ********************** What I want to know is where were you before you found CH.COM, by this I mean: Were you diagnosed? yes Did you have a Neuro? no Did you have meds? yes, fiorecet (good for puking and sleeping afterwords Did you think you were alone in this pain? yes You get where im going with this.................................................................... .. Part two: How has CH.COM helped you, by this I mean: Got meds? yes, ones that work Got a Doc? yes Again, you know where im going with this.................................................................... . Part three: (Easy) How did you find CH.COM? bought a computer, searched for clusterheadaches And now here's how I REALLY feel :) Pasted: Someone asked a while ago...where would we be without this board? Is the reason I have clusterheadaches was to MEET all of you great people?? I ponder that... I'm not a social person, in person. I really don't have any best friends. I don't go do anything with anyone on the weekends...except for Kaleb, and he's turning into a teenager and he's a totally different person now. You guys ARE my best friends. You guys are the people I spend my time with. I consider this as much "quality time" as I do in physical form. I feel I know the inside and outside of a lot of you...and I'm not sure I could feel that if I just knew you in person...and not online. Just some random thoughts, damn I do love this family!!!! Mast |
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Title: Re: Ok, Now lets talk CH.COM...... Post by sherryberry on Dec 12th, 2003, 12:33am I started this ride around age 10 or 11 which would have been '71 or '72. Was not diagnosed until around '87 or '88 (never kept notes) Once diagnosed, and once I had internet, I did a search with the old search engine that started with an "I" (infosomething?? It was the best until Google) and found this place, I think in '98 or '99. I have never had a neuro. I was put on a lot of the old migraine meds without ever being diagnosed as migraine. (They could tell it wasn't migraine, but didn't know what it was. But since it was "kind of" like migraine, I was put on Elavil, Inderal, Ergostat, etc) Once I found this place, I found out about Imitrex (tried, didn't work) Verapamil, Prednisone (tried worked while using only) and O2 (going to try). But the most amazing thing I found here was other people who shared this very rare (my doctor's words) disease. I thought since I was in the "rare" category and then because I was a woman, the "extremely rare" category, that I would never know anyone else with this. Interestingly enough, one of the first people I met was Elaine. A woman with CH. Not only did she have CH, she was Chronic!! I didn't even know at that time that there were people who were chronic. This woman suffered from this horrible pain.... ALL THE TIME!!! Right then and there, without even knowing it, I became attached to CH.com and the people who populated it. I may never get a neuro. I may never do the meds (until they find some without horrible side effects) But, I will never feel as isolated and as alone as I felt before I found this site. Even though I might not come here every day... I still know that, here, on this site, I can alway find people who truly KNOW what the doctors say is the worst pain ever endured by man. Love you guys! Thanks Jonny. |
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Title: Re: Ok, Now lets talk CH.COM...... Post by zenerzoo on Dec 12th, 2003, 12:37am Here we go: Part 1. Diagnosed: Yes by an er doc no less. This is my first cycle and I only went 1 Week without a diagnoses. Had to wait another week without any preventive meds in order to find a gp. Neuro: No , My gp doesn't think it would do any good. ( can't seem to find one to see me without a referall and I have no insurance) Med's : Found ch .com before going to my first appointment with the gp. I pretty much knew what should be tried and what wouldn't work. I got verampamil and indo. She wouldn't give me o2. Alone?: The first week before going to the er I was sure I was dying. A person couldn't possably have this much pain and still be healthy. I already knew that narcs wouldn't work because I had some off my worst attach taking vicaden for a tooth that had to be extracted. I was sure that I would go to sleepone night and my brain or eye would explode instead of me waking up in the worst pain I have ever felt. I felt guilty for putting the people close to me through the pain I was feeling it hurt to just look at the hopelessness on the faces of people who love and care about you and to think that that look is there because of you. Alone and scared doesn't come close to explaining that feeling of total isolation. part 3 : How ch.com has helped me : After the trip to the er I spent a lot of time reading about ch. I knew than that there was meds that could help and that there is many people who has suffered this for many many years. I read in disbelieve of people who have suffered this pain for 20-30 years took courage in the fact that life could be good again and though the medical world isn't a lot of help they do try . I think most medical people just can't grasp the amout of pain we endure. Got med : I knew for reading on ch.com the meds I was willing to try I learn of lots of things to help make it more bareable. And alternative treatments to try. Ch.com has been a valueable source for all this imformation. got doc: Found one. Part 3 : How I found ch.com : After my er visit I told my best friend that I had clusters and the next morning I had this site the O.U.C.H site and a lot of other imformation in my e-mail. She had stayed up half the night doing all this research for me so I could start learning right away. She has been one of my biggest supporter's and without her I would still not have any o2. I hope this is what you were looking for Johnny It;s the I can do with a ha. :D :D |
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Title: Re: Ok, Now lets talk CH.COM...... Post by Unsolved on Dec 12th, 2003, 1:09am Were you diagnosed? Yes...During my 3rd cycle Did you have a Neuro? Yes...still the same doctor for over 10 years. Probably saved my life. Super doc ! Did you have meds? Yes Did you think you were alone in this pain? *YES* .. I still find it hard to believe that anyone else goes through what I do (sorry). Part two: How has CH.COM helped you, by this I mean: Got meds? No Got a Doc? No But...I'm glad CH.COM is here !! Part three: How did you find CH.COM? Actually...A neurlogists from U of L gave me this address |
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Title: Re: Ok, Now lets talk CH.COM...... Post by brain_cramps on Dec 12th, 2003, 1:16am on 12/11/03 at 18:22:02, jonny wrote:
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Title: Re: Ok, Now lets talk CH.COM...... Post by Charlie on Dec 12th, 2003, 1:17am Were you diagnosed? Yes Did you have a Neuro? Yes Did you have meds? Yes but not for CH at the time Did you think you were alone in this pain? Oh yeah. Thought it was a stroke or malignancy for a few days. 2 How has CH.COM helped you, by this I mean: I was dumbfounded to find so many. Tons of information. For the first time I met someone who knew WTF I was talking about aside from creepy neurologists. Got meds? Not needed Got a Doc? Had 8 altogether. 2 for ch Part three: (Easy) How did you find CH.COM? Curious about CH and can‘t leave. Clusterheads need all the support they can get. Amazing place.. Charlie |
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Title: Re: Ok, Now lets talk CH.COM...... Post by Darleen on Dec 12th, 2003, 8:00am Ask and ye shall receive: Were you diagnosed? Yes John was Did you have a Neuro? Yes Did you have meds? Yes Did you think you were alone in this pain? For sure How has CH.COM helped you, by this I mean: Got meds? Luckily we had them Got a Doc? Had one already How did you find CH.COM? Surfin the net when John was having a really bad episode. CH.COM has helped us with simply knowing that we are not alone in the pain. There are actually other who suffer like John does and also support like I do. It still amazes me every time I read the posts that there are so many people out there like us. Thanks to all who are here. D :) |
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Title: Re: Ok, Now lets talk CH.COM...... Post by jadedgazer on Dec 12th, 2003, 8:49am Were you diagnosed? yes (a few times, with a few things, before they got it right) Did you have a Neuro? yes Did you have meds? yes Did you think you were alone in this pain? yes Part two: How has CH.COM helped you, by this I mean: This site, all of the information here, all of the support that can be found here is so wonderful. I AM NOT ALONE! I want to thank each and every one of you for being here because it has meant the world to me. It has lifted me at my lowest moments just to be able to visit here and know that there are people here who truly understand where I am coming from. All of the advice about treatments is invaluable to those of us who are still learning about what it is that we are dealing with. Some of you "old timers" ;) simply have no idea how much it means to us to be able to turn to you for advice. Thank you for being here. Got meds? yes, have O2 now ;;D Got a Doc? a smarter one Part three: (Easy) How did you find CH.COM? cruisin' the net (most likely surfing Yahoo!) |
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Title: Re: Ok, Now lets talk CH.COM...... Post by sandie99 on Dec 12th, 2003, 9:22am Ok, wanna talk? You got it, Jonny.... ;;D Were you diagnosed? January 2003. Did you have a Neuro? Yep, ans saw another one yesterday. Did you have meds? I have tried vermin, relert (used to help), zomig nasal spray, predisolon, maxalt (helps), pizotifen ja next one, starts with i, idotrimen or something like that is yet to be tried (I start on Sunday) Did you think you were alone in this pain? Absolutely! Until I found ch.com, that is. Part two: How has CH.COM helped you, by this I mean: Got meds? no at the moment, but lots of good advice and tips I am going to try Got a Doc? nope Part three: (Easy) How did you find CH.COM? If I recall correctly, this site appeared to my screen after typing "clusterheadaches" to Google search And I am not leaving this lot that quickly! I do hope that my headaches will... :) Best wishes & PFdays, sandie99 |
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Title: Re: Ok, Now lets talk CH.COM...... Post by ozzman on Dec 12th, 2003, 11:04am on 12/11/03 at 18:28:29, BobG wrote:
What Bob said... How did it changed me? Not only am I still around, but decided to get involved started the PANJ OUCH Chapter and have continued to be involved with OUCH in different capacities. Oh and yah I *do* have a life ouside CH.com and OUCH /OUCH PANJ, quite busy actually. Ozzy |
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Title: Re: Ok, Now lets talk CH.COM...... Post by gmlevenhagen on Dec 12th, 2003, 11:17am Were you diagnosed? Just diagnosed after 12 years of thinking I was a wack job!!! Did you have a Neuro? NO Did you have meds? All kinds but none that helped Did you think you were alone in this pain? Yes!!!! [smiley=bomb.gif] You get where im going with this.................................................................... .. Part two: How has CH.COM helped you, by this I mean: Had I not found this sight, I would have thought my new doc nutzzzz [smiley=JAW_DROP.gif], O2 who Knew??? (not me) and she took away all the pills I was popin' Got meds? No Got a Doc? Yes Again, you know where im going with this.................................................................... . Part three: (Easy) How did you find CH.COM? Yahoo.com |
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Title: Re: Ok, Now lets talk CH.COM...... Post by athos12 on Dec 12th, 2003, 11:30am Were you diagnosed? I was diagnosed with many different things until I finally found this place, learned what I was out there, and armed with the info worked with the doctors on what was happening.. Then I met the folks at Mayo and the keyed right in. Did you have a Neuro? Yes Did you have meds? Yes Did you think you were alone in this pain? I knew there were others, others in my extended family have have migraines etc, but early on I did not think that anyone could understand what was happening... It was not until I found CH.com that I felt that there were others that know what the hell is going on. You get where im going with this.................................................................... .. Part two: How has CH.COM helped you, by this I mean: Got meds? It has helped to find other resources Got a Doc? no Again, you know where im going with this.................................................................... . Part three: (Easy) How did you find CH.COM? Researching headache symptoms on google, and then presto... then I was here, the guy that does not like to do dishes.. ;) Athos |
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Title: Re: Ok, Now lets talk CH.COM...... Post by Roxy on Dec 12th, 2003, 11:37am Ok,....Enough of the fun stuff....sex, war, religion Come on jonny....please....let me talk about sex ;) What I want to know is where were you before you found CH.COM, by this I mean: Were you diagnosed? Not for a year or so Did you have a Neuro? Went through some real dumbass's Did you have meds? Nope Did you think you were alone in this pain? Yep, thought that there was really something weird going on with me (ok....weirder than normal) You get where im going with this.................................................................... .. Part two: How has CH.COM helped you, by this I mean: Got meds? Being chronic, I can literally say ch saved my skin. Got a Doc? Yep Again, you know where im going with this.................................................................... . Part three: (Easy) How did you find CH.COM? Got the diagnosis, sat down and typed in clusterheadaches. Then the most wonderful thing happened......I started meeting people, who in the last year, have literally changed, enriched and fulfilled my life in ways I can't begin to describe. I always had a pretty busy and full life before ch, but the friends I have made here, I can't imagine not having met them or not having them in my life from now on. CH.com is now part of my life, a damn good part, and it always will be. I just love you guys too much. |
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Title: Re: Ok, Now lets talk CH.COM...... Post by BillyJ. on Dec 12th, 2003, 1:05pm Were you diagnosed? NO Did you have a Neuro? Yes,but for migraines not CH.I didn't know what they were or that they'd be back Did you have meds? none for CH Did you think you were alone in this pain?Yes. it's nice to know that I'm not alone,but it is sad that there are so many others in this CH hell. You get where im going with this.................................................................... .. Part two: How has CH.COM helped you, by this I mean:Saved my life and whats left of my sanity.I'll never be able to express my grattitude to DJ for starting this site,and to all of you for being here Got meds? YES Got a Doc? yes Add inGot friends who understand the beast?Got support? More than I ever could have hoped for! Again, you know where im going with this.................................................................... . Part three: (Easy) How did you find CH.COM? I typed "Suicide+headache" in the search bar.(at that time I had a loaded 44 setting on top of my monitor just waiting for the next hit) The 1st posts I read said"suicide doesn't stop the beast it just keeps us from dancin" that made me think again. The 2nd post was about O2!!!! O2 is the'silver bullet' for my beast.I had been seeing my neuro for about a year for migraines when that cycle started,the day after finding this site I walked into her office while geetind hit and managed two words (Oxygen,clusters!)She hooked me up on the spot.After the hit she asked me why I never told her I had CH,I said until last night I didn't know that they had a name or that they would keep coming back! Enough rambling from me. Pain Free Wishes To ALL, Billy |
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Title: Re: Ok, Now lets talk CH.COM...... Post by ZAIRA on Dec 12th, 2003, 2:53pm What I want to know is where were you before you found CH.COM, by this I mean: Were you diagnosed? Yes... Did you have a Neuro? Yes... he is my second dad... Did you have meds? Yes... Did you think you were alone in this pain? NO! I've ever thought that in the world there is someone like me "unlucky"... You get where im going with this...................................................................... Part two: How has CH.COM helped you, by this I mean: Got meds? Yes... Got a Doc? No... Again, you know where im going with this..................................................................... Part three: (Easy) How did you find CH.COM? By Riccardo... ;;D Thank you for your time Thank you to be here... I love you all... :-* ..........................jonny............... Zazi |
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Title: Re: Ok, Now lets talk CH.COM...... Post by echo on Dec 12th, 2003, 3:02pm Were you diagnosed? 1985/86 Did you have a Neuro? Three over the years. The one I have now actually knows what he's doing. Did you have meds? I've run the gammet. Dosage alterations, combo platters, but presently using none. Everything and combination of were not doing the trick any more. The side effects were killing me and my marriage. Did you think you were alone in this pain? Yes - years ago -- no one could relate to what I was dealing with. Part two: How has CH.COM helped you, by this I mean: Friendships, phone calls. Knowing I'm not playing this game alone Got meds? abortives only Got a Doc? Yes. GP and Neuro are great. Part three: (Easy) How did you find CH.COM? Some search engine before the site changed. |
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Title: Re: Ok, Now lets talk CH.COM...... Post by JDH on Dec 12th, 2003, 3:19pm Were you diagnosed? yes in '85 Did you have a Neuro? Yes...at least he said he was. Did you have meds? Various meds over the years w/out much success. Did you think you were alone in this pain? oh yeah, for about 12 years I always figured I was the only one going through this madness. You get where im going with this.................................................................... .. ummm, no Part two: How has CH.COM helped you: it keeps me off the streets at night. Got meds? I found out about Imitrex, o2, and 'shrooms through some of the people here. Got a Doc? a GP a Neuro and a headache specialist. Again, you know where im going with this.................................................................... .nope Part three: (Easy)...that's what you think. How did you find CH.COM? through a search engine...prolly Alta Vista or Yahoo. Jim |
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Title: Re: Ok, Now lets talk CH.COM...... Post by cathy on Dec 12th, 2003, 3:22pm Answering for Wes... :) Were you diagnosed? Just....after 4 years of hell.. Did you have a Neuro? Yes Did you have meds? Imitrex Just Did you think you were alone in this pain? Yes You get where im going with this.................................................................... .. Part two: How has CH.COM helped you, by this I mean: Got meds? Yes O2 and lots of info. Got a Doc? For what he's worth yes the emotional support and the friends I have made are the icing on the cake, no other family like this on the net!! Again, you know where im going with this.................................................................... . Part three: (Easy) How did you find CH.COM? Yahoo search the emotional support and the friends we have made are the icing on the cake, no other family like this on the net!! Jonny.... [smiley=hug.gif] |
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Title: Re: Ok, Now lets talk CH.COM...... Post by Carl_D on Dec 12th, 2003, 5:30pm Were you diagnosed? Yes, at age 17 by my GP. He told me I had 'classic clusters' and that they could be a bear to treat. Did you have a Neuro? I couldn't afford to go to a neuro. Did you have meds? Tried various meds with some success until I became chronic in '98 - then I seemed to be unresponsive to most meds. Did you think you were alone in this pain? Completely! Nobody understood what I was going through. I felt lost. You get where im going with this.................................................................... .. Part two: How has CH.COM helped you, by this I mean: Got meds? I learned alot about meds and alternative treatments. Got a Doc? Still trying to find a good neuro. It is almost like trying to find a needle in a haystack. Again, you know where im going with this.................................................................... . Part three: (Easy) How did you find CH.COM? A friend of mine did a search one day and found this site. He turned me on to it - and it blew my mind when I read some of the posts. Yes, other people DO have this. My sis in law read some posts and said "If I didn't know any better, I would swear you wrote these." as the posts echo'd what I had been trying to tell people all along. I found that not only am I not alone, but also am not the only one whose life has been devastated and thrown off-course due to CH. Before finding this site, I had lost everything, including the will to live. This site gave me something back that, without it - I would be dead by now. It gave me hope. It still gives me hope. It proves to me that something good can come out of something this horrible. Peace, Carl D |
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Title: Re: Ok, Now lets talk CH.COM...... Post by Cerberus on Dec 12th, 2003, 9:16pm were you diagnosed? YES, with everything BUT CH. Did You have a neuro? NO Did you have meds? YES, but none that worked worth a shit. Did you think you were alone in this pain? OH YEAH DEFINATELY! Part 2: YES AND YES :) Part 3: we came home from the docs after the "O2 experiment" and Woobie went to work searching the web for info. Landed here and been here since. :) Peace, Rainman |
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Title: Re: Ok, Now lets talk CH.COM...... Post by Lori on Dec 13th, 2003, 12:58am Were you diagnosed? No Did you have a Neuro? No Did you have meds? No Did you think you were alone in this pain? Yes You get where im going with this.................................................................... .. Part two: How has CH.COM helped you, by this I mean: Got meds? Yes Got a Doc? Yes, but moved so now looking for a new and knowledgable doc..first prospect wasn't what I want in a doc Again, you know where im going with this.................................................................... . Part three: (Easy) How did you find CH.COM? Did a Search on Cluster headaches. I am truly thankful to DJ for having this site exist and to all who contribute here to help newcomers get the information they (I ) so need! I would have been tortured again my last cycle if I wouldn't have found this site. So, thank you! |
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Title: Re: Ok, Now lets talk CH.COM...... Post by mikeyd on Dec 13th, 2003, 9:32am Were you diagnosed? Yes Did you have a Neuro? No. Did you have meds? Yes Did you think you were alone in this pain? Oh yeah! Part two: How has CH.COM helped you, by this I mean: Got meds? good info - esp oxygen Got a Doc? already had one Part three: (Easy) How did you find CH.COM? Coppernic search engine Always ahve a minute for a buddy jonny! ^5 Bro! PFDAN Mikeyd P.S. Thanks DJ, you da mannnnn!!!! [smiley=sayyes.gif] |
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Title: Re: Ok, Now lets talk CH.COM...... Post by kim on Dec 13th, 2003, 9:46am Were you diagnosed? Yes, began suffering as a teenager and diagnosed in early 20's. I'm 42 now. Did you have a Neuro? Yes Did you have meds? Yes Did you think you were alone in this pain? YES You get where im going with this.................................................................... .. Part two: How has CH.COM helped you, by this I mean: Got meds? Yes Got a Doc? Yes Again, you know where im going with this.................................................................... . Part three: (Easy) How did you find CH.COM? internet search Finding other people like me and FINALLY being able to talk to people who completely understood what i was going through - PRICELESS :) |
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Title: Re: Ok, Now lets talk CH.COM...... Post by jonny on Dec 13th, 2003, 1:23pm Now see how much more you know about each other? Way to go folks!!, I know first hand that reading this thread has made DJ smile ;;D Thanks for all the replies. ............................jonny |
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Title: Re: Ok, Now lets talk CH.COM...... Post by t_h_b on Dec 13th, 2003, 1:50pm Were you diagnosed? Yes Did you have a Neuro? No Did you have meds? Yes, but inadequate Did you think you were alone in this pain? YES!! I cried when I first found this site. You get where im going with this.................................................................... .. Part two: How has CH.COM helped you, by this I mean: Got meds? Yes, Yes, Yes Got a Doc? Yes, a neuro Again, you know where im going with this.................................................................... . Part three: (Easy) How did you find CH.COM? Google |
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Title: Re: Ok, Now lets talk CH.COM...... Post by M.R. on Dec 13th, 2003, 2:21pm I'll even throw my 2 cents in (being a lurker and all) Were you diagnosed? Yes, after about 2 years of hell from ''sinus infections from smoking'' Did you have a Neuro? No Did you have meds? Yes, but never enough...Verp. 480 a day, Imitrex, and O2 ( not counting the other ones to break cycles) Did you think you were alone in this pain? Didn't know....never would of guessed that there were so many You get where im going with this.................................................................... .. Part two: How has CH.COM helped you, by this I mean: Got meds? Yes...can talk to my Doc with knowledge now Got a Doc? Yes, and a damn good one. He is the one who told me what this was. Again, you know where im going with this.................................................................... . Part three: (Easy) How did you find CH.COM? Dogpile.com ( a good search site, the best I've seen anyway) |
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Title: Re: Ok, Now lets talk CH.COM...... Post by BstnEagles on Dec 13th, 2003, 2:36pm What I want to know is where were you before you found CH.COM, by this I mean: Were you diagnosed? yes although I had previously diagnosed myself after having ch dismissed as stress by a GP Did you have a Neuro? I havea doctor who studies these ehadaches, but he is not a neurologist. Did you have meds? Yes, Imitrex and Verapamil Did you think you were alone in this pain? Yes, had never met anyone with the condition You get where im going with this.................................................................... .. Part two: How has CH.COM helped you, by this I mean: Very Suppportive and great advice Got meds? Already had them. Got a Doc? "" Again, you know where im going with this.................................................................... . Part three: (Easy) How did you find CH.COM? Google search. |
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Title: Re: Ok, Now lets talk CH.COM...... Post by Prense on Dec 14th, 2003, 12:10am About 4500 more members to go (at least)... B U M P ! |
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Title: Re: Ok, Now lets talk CH.COM...... Post by amen on Dec 14th, 2003, 10:32pm Diagnosed?..............yes Neuro?.....................No, still don't yet Meds?......................None that worked at the time, better now. Alone?.....................No, my dad gets these too. How has CH.com helped?........Information, and support(until I posted a stupid thread) and got Jonny all riled up [smiley=laugh.gif] I've noticed it doesn't take much. Got meds?.........yes Got doc?............yes How did I find?........came home from the docs and typed in Cluster headaches(whamo...here i am, a lowly lurker most of the time ::)) |
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Title: Re: Ok, Now lets talk CH.COM...... Post by fubar on Dec 14th, 2003, 11:20pm Before CH.com Were you diagnosed? Yes. I had been diagnosed by my general practice doctor over 11 years ago after suffering for at least 4 years solid. Did you have a Neuro? Yes. He had been putting me through all the usual suspects with no real success. The problem was I had to wait for a new cycle every time to try a new drug that wouldn't work. So the process of finding out that almost nothing worked at all was very long. It wasn't until this cycle, which turned into almost 3 years of hell, I was on Verapamil, and also finally relented and tried Lithium. That combo worked better than anything else to that point. Did you think you were alone in this pain? I thought I was probably insane, since nobody understood what I was saying about this 'icepick headache' as I called it. It came with no warning, instant hell, and left just as quickly. People who see it happen aren't usually convinced you're not faking because you go from one extreme to the other so quickly. After CH.com How has CH.COM helped you? I've learned that others know and understand this pain which I could not explain to anybody. I'd always felt that some others, including my wife, were thinking I was just being dramatic. This site helped me educate those that wanted to learn about it. It's a place that feels like family, complete with all of the beautiful ugliness that a family can have, and I'd feel lost if it disappeared. I found out about OXYGEN here and that probably saved my life and sanity. I also was eventually persuaded to try the cluster buster method, and I broke out of being chronic for almost 3 years. I am now pain free, and I have CH to thank for it. Part three: How did you find CH.COM? Google, the second most important web site in the world behind www.clusterheadaches.com. |
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Title: Re: Ok, Now lets talk CH.COM...... Post by AlienSpaceBabe on Dec 14th, 2003, 11:26pm Were you diagnosed? yes Did you have a Neuro? nope Did you have meds? meds that didn't work.... Did you think you were alone in this pain? of course. i was told it was all in my head... that nothing could hurt this much so i must be faking. Part two: Got meds? yuppers. got VERAP!! Got a Doc? yuppers. good one, too. and.... found new friends. found out i can be the "real" me and still be accepted. found out that, despite how much i hurt sometimes, there are others that have much more pain much more often. found out about oxygen. tried imitrex injections because several people suggested. discovered that fungus CAN work. found people who understand me. discovered that there's at least one person in the world EXACTLY like me (Mrs. Rumplestiltskin). discovered that I am stronger than I think I am. discovered that everyone here is stronger then they think they are. Part three: (Easy) How did you find CH.COM? father saw something on good morning america in 2001. called me and told me he thought it was what i had. Lizzie |
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Title: Re: Ok, Now lets talk CH.COM...... Post by jonny on Dec 15th, 2003, 12:35pm on 12/14/03 at 22:32:41, amen wrote:
Dont mind me, I bark loud but never bite....LOL ;;D ............................jonny |
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Title: Re: Ok, Now lets talk CH.COM...... Post by Big_Dan on Dec 15th, 2003, 1:03pm What I want to know is where were you before you found CH.COM, by this I mean: Were you diagnosed? Yes. Did you have a Neuro? Yes Did you have meds? Yes... not very effective though... Did you think you were alone in this pain? By all means. Part two: How has CH.COM helped you, by this I mean: Got meds? Better ones... and O2... Got a Doc? Better one... thanks to Echo... Part three: How did you find CH.COM? Google... couldn't find any informtion elsewhere... but got lucky skimming through umpteen pages of horseshit.... -Big Dan |
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Title: Re: Ok, Now lets talk CH.COM...... Post by echo on Dec 15th, 2003, 2:18pm on 12/15/03 at 13:03:43, Big_Dan wrote:
Thanks Dan, You have no idea how big my smile was when I read this. Glad to know Dr Z has been able to help you out, just as he has for me. |
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Title: Re: Ok, Now lets talk CH.COM...... Post by Mikey on Dec 15th, 2003, 3:09pm What I want to know is where were you before you found CH.COM, by this I mean: Were you diagnosed? Yes. I didn't even know that there was a headache called Cluster when i was diagnosed with them. Did you have a Neuro? Yes, he was the one that diagnosed me. Did you have meds? Yes, but not the appropriate ones yet, until i got educated here, and i think that was around the end of 99'. Did you think you were alone in this pain? Yes, i pretty much did, because the neuro said how rare it was to have. Part two: How has CH.COM helped you, by this I mean: Got meds? Yes, finally got help here in the right direction. Got a Doc? Yes. Part three: (Easy) How did you find CH.COM? Right after i was diagnosed, i got online to find anything i could about CH,....Then low and behold, this became my Home and Family!! Thank you for your time You are so very welcome Jonny!!!!!!!! :) :) Mikey, ;;D |
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Title: Re: Ok, Now lets talk CH.COM...... Post by miCHel on Dec 15th, 2003, 5:07pm OK my turn... Were you diagnosed? Yes Did you have a Neuro? No (saw one who diagnosed me and then retired...) Did you have meds? Yes... but no preventative and no abortive that worked. So it's more like a "No" Did you think you were alone in this pain? You bet! I have had this for twenty years and still have never met another CHers face to face... You get where im going with this.................................................................... .. Part two: How has CH.COM helped you, by this I mean: Got meds? Oh Yeah! That medical info became my bible (tried some stuff that finally helped!) Got a Doc? Somebody on this site suggested a good medical center right here in Montreal. For the first time, I was treated by someone who had a clue (and in record time, too) Again, you know where im going with this.................................................................... . Part three: (Easy) How did you find CH.COM? My girlfriend found this site for me... when I was in the middle of a very bad cycle. It was like coming out of a coma. I felt like a castaway stranded on a desert island for twenty years who gets picked up on a cruise ship filled with former castaways... or something like that! Anyway, this site and all the people here were a great gift! Cool thread Jonny! miCHel |
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