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Topic: Remeber your first CH attack? (Read 791 times) |
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Prense
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Remeber your first CH attack?
« on: Jul 14th, 2004, 9:37am » |
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How many folks recall the day of their first CH attack? If not the exact day, month and year?
I remember the exact day and rough time of my first one. 20 Aug 1992 a little after 7pm. I was in the middle of fixing Mom's VCR (replacing the internal fuse).
Chris
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ave
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Re: Remeber your first CH attack?
« Reply #1 on: Jul 14th, 2004, 10:07am » |
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I do. It was in january 1999 and we were in a hotel in Rotterdam for the Film Festival.
I was in the bathroom combing my hair when these spikes started to hammer through my temple.
And I started the first steps of the dance.
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purpleydog
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Re: Remeber your first CH attack?
« Reply #2 on: Jul 14th, 2004, 10:23am » |
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I was at home on a Saturday in May of 2001. I was in my darkened living room and this white hot burning started in my left eye. Way worse than the migraine I was fighting. The only good thing about it was that it only lasted 15 minutes.
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babycakes
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Re: Remeber your first CH attack?
« Reply #3 on: Jul 14th, 2004, 12:30pm » |
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I was home watching TV...1985..in Brooklyn. I thought I was having a stroke. Doctor knew nothing...felt foolish to go to the ER. I was lost.
All I could take was Advil...and that barely helped.
Thus started 20 years of searching and fearing...searching for relief...fearing the next attack.
I knew nothing of "cycles" then. Figured I'd have these the rest of my life....which I was willing to end at that time.
Brian
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Superpain
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Re: Remeber your first CH attack?
« Reply #4 on: Jul 14th, 2004, 4:06pm » |
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Nope.... Too long ago. I think it was in the middle of the night though, and I'd imagine I probably went crying to my mommy like a little bitch. I do remember doing that alot when they came on, just don't remember the first time. My mom was a nurse, so I hoped she could help me. No such luck.
Too bad I didn't know I could go over to the neighbors welding shop next door and get immediate relief. 
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Chris
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Re: Remeber your first CH attack?
« Reply #5 on: Jul 14th, 2004, 5:05pm » |
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Oh yes .. I remember. My girlfriend and I had to 'make an appearance' at my parents house because they had a cake for me. It was the day before my 19th birthday. We're all sitting around the table talking, just finished up with some cake, and it hit me. I ended up going to the ER within an hour. I got my first dose of Morphine (and it worked well). I thought I was dying from a brain tumor or something.
I'll never forget that day 
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911please
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Re: Remeber your first CH attack?
« Reply #6 on: Jul 14th, 2004, 5:21pm » |
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Yes I do, I was living in Manhatten Bch, LA. 1978. I had just had four root canals done 2 days prior and the pain emulating from my jaw into my temples I thought for sure was from root canals that didn't take. Within three days I was back at the dentist having him yank my defective molars. Of course, little did I know that this was the first visit from the beast, and had nothing to do with teeth. Yes that fateful two week period when I almost put my head through the window searching for pain relief.
How could one forget.... Novenber 1978
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Biker
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Re: Remeber your first CH attack?
« Reply #7 on: Jul 14th, 2004, 6:58pm » |
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Cant remember the year, but it was sometime shortly after Saint Patricks Day. Im thinking about 8 years ago. I crashed the motorcycle and bumped my head pretty hard. After recovery in the hospital, I was on some pretty good pain meds. It must have been about June I finially got healed enough to return to work. With no more pain meds, I remember waking in the middle of the night sleeping in the pick-up camper. Night after night after night. I thought my brains were leaking out through my nose. Doctors couldnt find anything. A dentist pulled a tooth. I thought I was gonna die, (and kinda wishing I would.) After a couple of years I became right friendly with a nurse who happened to work for a nurologist. After several question and answer sessions, and a run through the MRI, I was told I have cluster headaches. I was told it was not uncommon for a hard blow to the head to start such headaches. I must have met a dozen guys after that who also started haveing clusters (or something similiar) after getting hit on the head. That Neruo-Surgeon began treating me for CH, and it sure helped. It just does not want to go away. I was pain free for nearly 2 years, then wham!!!!! I started dancing again this summer. Well, at least now, I recoginize I am not the only one. I have found a few ways to sorta relieve the pain, but I always seem to be waiting for the next attack. I feel kinda tired right now. I had a whole 2 hour dance this afternoon. I never really kept track of the time before. Oxygen eased it alot, but as soon as I stopped inhaling the oxygen, the devil came back. There has been a change in the weather, perhaps things will start looking up.
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EvertBoer
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Re: Remeber your first CH attack?
« Reply #8 on: Jul 14th, 2004, 9:07pm » |
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I was 19, living in San Francisco, working at Pier 29. This was back in 1968-1969. I had just had a cold and my left ear was plugged up. After that cleared up, I started having really bad headaches. I went to a doctor. He prescribed some nose drops (no idea what they were) but as soon as I used them I had the worst headache in my life. Every hair on my head was totally sensitive. I ended up trying to knock myself out by banging my head against the wall. After that, I associated it with my left ear for the longest time. Like everyone else on this board, went to lots of quacks, tried lots of outrageous therapies, nothing helped. Eventually, 20 years later, while visiting the UCI medical Library in So. Cal, read some books on headaches. It really pissed me off when I read about Cluster Headaches, because I was classic...one side of head, drooping face and eye, bloodshot eye, plugged up nostril on that side of the face & excrutiating pain lasting 30 minutes to 3 hours. Waking up in the middle of the night, etc. (Episodic). Went to a new doctor, told him I had cluster headaches, insisted on ergotamine inhaler & oxygen (didn't have imitrex yet) and have been able to bear it ever since. I'm now 55, and had 5 PF years and thought I was cured, but just came back last July and the episode lasted for 7 months. No complaining though, it was worth having the 5 year hiatus.
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Kris_in_SJ
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Re: Remeber your first CH attack?
« Reply #9 on: Jul 14th, 2004, 9:17pm » |
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9 years ago - a Friday night about 7 PM - I was relaxing after a hard week at work.
Bam! Didn't last long, maybe 30 minutes, but left me with a 3/4 shadow pain and droopy eye that lasted about 7 weeks. Weeks of tests followed - "maybe it's this ... maybe it's that."
Three classic episodes later, we know. It's not "this" and it's certainly not "that."
Kris
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Samantha_Smith
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Re: Remeber your first CH attack?
« Reply #10 on: Jul 14th, 2004, 10:43pm » |
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Remember???? How could I forget!!!!!
Yes, it was the first week of August in 2000. I was living in RI at the time. All of my life I had suffered from migraines and at first I just thought it was a monster migraine with bizzarre "allergy-like" symptoms.
I went to the ER in Providence and got a shot of Demerol. The next day--the same thing except worse. Back to the ER. The day after that--even worse. Back to the ER. More demerol. On the 4th day I tried to kill myself by taking 90 each 50 mg Doxepin capsules, 90 each 1 mg Xanax, a butt load of alcohol and I can't remember what else.
My landlord found me on the verge of death the next morning and brought me to a different ER in Pawtucket because he figured the ER folks in Providence didn't have a !@##$ clue about what was happening......little did we know what would transpire next. (BTW When my landlord found me I was totally covered in my own feces and urine and so was my bedroom.) Once I "awoke" from the drug stupor the ER physician asked "What's wrong?" I replied, "Nothing is wrong--I want to die. My head hurts really bad. I have a right to die."
Well, nce the ER physician in Pawtucket heard my "right to die" speech he sent me to the Providence ER in an ambulance on the suicide watch floor. Max security. They wouldn't give me any medication there and I was in soooooo much pain that I was literally out of my mind. I was going insane. They told me if I didn't calm down then they would inject me with Haldol. I told them that I was allergic to phenothiazines (the group of drugs that Haldol is in) but they didn't listen to me and gave me the shot anyway. About an hour later I ended up with akathesia from the Haldol (i.e. your eyes roll back in your head, you tilt you head to one side, drool, your knee can't stop bouncing, etc.) Then compassionate, informed and intelligent ER staff strapped me down to a gurney in 5 point restraints and sent me to a locked drug rehab facility (they figured that because I had "overdosed" that I was a "drug abuser".) They also thought that because I had come to them 3 nights in a row with a "headache" that I was "drug seeking". Let's just forget about diagnosing the underlying problem here folks!!!!
So there I was in a locked down drug rehab in who knows what town (WTF???)with cluster headaches (which I didn't know that I had because I wasn't diagnosed until a few weeks later).To top it all off I was new to RI, didn't know anyone, and couldn't remember my landlord's cell phone number. So I spent three %%$@#$$%% days there!!!! Meanwhile my landlord finds out where the Providnce ER shipped me off to and called two attorneys who specialize in major drug trafficking to bust me out of that joint. The story is so unbelievable that's its believable.
No....I'll never forget the first time I had CH. Thanks for reminding me. XXX OOO Samantha
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Fatcat
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Re: Remeber your first CH attack?
« Reply #11 on: Jul 15th, 2004, 4:28am » |
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I was 18 and just finishing college. May, 1992. I woke up one morning with a piercing pain in my right eye. It was something totally different to anything I'd experienced before. I couldn't make it better by relaxing. I was agitated. It went after about 30 mins. I remember my second one too, a few days later. I was sifting thing house records in a record shop with a friend. I had to dash back to my car and I was holding back tears as I attempted to drive home.
Seems to me that many of us start dancing in our teens.
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kissmyglass
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Re: Remeber your first CH attack?
« Reply #12 on: Jul 15th, 2004, 1:54pm » |
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Nope.. At first My dumb ass thought I had the worlds worst toothache...for 2 years...
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Ronny
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Re: Remeber your first CH attack?
« Reply #13 on: Jul 15th, 2004, 2:31pm » |
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Sure i remember, It was early 1998, february. I just ordered a new motorcycle, came home with a big smile on my face and wham... WTF was that, i took a couple of pain killers and it went away after 20 mins. I' ve been doing so until last month when i finaly went to see a neuro.
Ronny.
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totka
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Re: Remeber your first CH attack?
« Reply #14 on: Jul 16th, 2004, 5:15pm » |
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First hit is as unforgettable as the first ... eeeer ... kiss. 
Sometime between 5 and 10 Aug 1982. Damn hot summer day ...
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seannap
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Re: Remeber your first CH attack?
« Reply #15 on: Jul 16th, 2004, 7:38pm » |
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I find it interesting that so many of us thought it was tooth related.....
For me, almost a year to the day..... had been having tooth probs with a tooth in the front, but thought that I was getting an infection in my jaw or something, because it was causing pain toward the back of my jaw, up into my nose, on top of my head and tightening in my ear.
Well... it was my normal allergy season... go to the dentist - tooth ok... go to the doc.... pop me up with new kind of allergy pill and nasal spray..... headaches worse.... and worse and worse....
Of course, this was right after I get a promotion at work, so it "clearly was due to the stress of the new job". SO, I keep popping the 16-20 advil/day. 2or3 every 3 hours and 22 minutes. if i waited until the 23rd minute... POW!!! Right in the Left eye. Was like clockwork.
Took me about 5 doctors visits, 10 visits to the chiropractor, 3 MRI's, a trip to the eye doctor, 2 trips to the dentist... and finally - a smart fiance who made me take in the description of cluster headaches to my doc to convince him to get me into the nero to finally get it under control. (can you ever call it "under control"?)
So, here I am, 12 months later, and have had only minimal HA: 3-4/week that peak for only 15-20 mins (w/a shadow of about 20 before and after) and moderate on the pain scale for the past 2 months.
Unfortunately, it has occupied so much of my life for the past year - I can't bearly remember what life was like before I had the monster sitting on my shoulder.
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Lologar
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Re: Remeber your first CH attack?
« Reply #16 on: Jul 19th, 2004, 12:17am » |
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HI everybody, this is my first post  I remember my first attack. It was near Thanksgiving in 1988 (24 years old.) It hit me in the middle of the night and It was the worst pain I have ever had! About 3am, the left side of my face on fire! I actually thought I had a bad tooth, so I called a dentist and met him at his office at 5am (cost me plenty!) he took x-rays and said there was on molar that had a <slight> root damage, but did not believe it could cause so much pain. I told him to yank it, he did. Next night....BAM! next I wen to an M.D.....idiot stuck his finger in my ear told me to open wide then close then he said I had T.M.J. (Temporal Mandibular Joint syndrome) He told me to take Advil. I though I had TMJ for about 5 years till I wound up in an emergency room after 6 hours of massive pain. The ER Dr. referred me to a neurologist and after 10 minutes of explaining to him he told me about CH. and a free sample of Imitrex injector/injections.
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don
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Re: Remeber your first CH attack?
« Reply #17 on: Jul 19th, 2004, 7:38am » |
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Quote:Remeber your first CH attack?
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Nope but I remember my last and thats enough for me to stay informed, well stocked with meds, and in contact with my neuro.
My eyes, sinusus, teeth, ears, stress levels, etc. etc. have all checked out well over the years.
I have paid the monthly mortgage for therapists, acupuncturists, chiros, biofeedbackologists (?), herbalists, and voodoo priestesses for the last time. The vibrating glasses worked well for.........never mind.
Now I just put Glaxo over the top for each quarter.
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Axel
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Re: Remeber your first CH attack?
« Reply #18 on: Jul 19th, 2004, 3:51pm » |
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I don't remember exacty when they started, I' now 39 and have had HA ever since I can remember...but I think it was arond the age of 24 that it got serious, exactly when wy wisdom theet started coming out did the pain intensified.....and was too scared to have them pulled out ,till the pain got so intense, had them puulled out...(ouch!) and still got HA! The first big one that I remember was on my 30th birthday !!!...and I was vacationing in morrocco,and that exact evening I got HIT ,in a restaurant whith a 8 member band with oriental sounds, very,very loud, packed full of course and my friends had organised a surprise party for me...........It was a 3 hour hit , and was forced to stay there and try to be polite but it just ended up making everyone feel uncomfotable...So that one I'll never forget....It's kind of my first one... take care... Axel.
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.......ciao... AXEL.......
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johnd7
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Re: Remeber your first CH attack?
« Reply #19 on: Jul 19th, 2004, 11:29pm » |
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Don't remember but best my Mom and I can remember I was around 14 or so when they started (34 now) though like most people we didn't know what they were then. I saw a few Dr.'s and nothing helped of course. I remember Fiornal was the drug I got first. When I was 17 I joined the Navy and continued to see Navy Dr.'s and of course they had no idea what they were. They did catscans and all that junk. Finally when I was in my early 20's I was working in a Nursing Home in the Rehab Dept. and we used to have meetings with all the PT's, OT's and a Neuro guy used to come to talk about stroke stuff or something and one day we got to talking and he new they were Clusters right away. I never really got any real help though until I finally did my own research and found this site around 1999 and then told my Dr. that I needed 02 and Prednisone. He gave me no hassles and we have been doing the same treatment every since.
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IndianaJohn
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Re: Remeber your first CH attack?
« Reply #20 on: Jul 20th, 2004, 6:40pm » |
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I remember mine. I was 28. Could't figure out what was going on. Went from doctor to doctor to dentist. Was diagnoses with TMJ, and all kinds of other things. No one could understand what was happening to me. No one took me seriously. My wife thought that I was just weak. Finally I found a specialist that suffered from migraines and she knew what was going on. She read from a med book that described my condition exactly. Started prednisone and Imitrex and felt better that day. Then s My Doc retired and I have been struggling to find one that understands CH ever since. NorthEast Indian doesn't have many neuro's that specialize in HA's, so the search continues.
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Did my brains fall out or is this headache over?
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lisa h
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Re: Remeber your first CH attack?
« Reply #21 on: Jul 21st, 2004, 12:30am » |
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This is my first post. I wept like a baby when I discovered this site and started reading the accounts. I had never met or heard of one other person who ever had the same symptoms as me. I don't remember the exact first cluster headache but I do remember I was in 7th grade.(I'm 36 now.) I would get them like clock work every day 2nd period in algebra. I'd sit there massaging the back of my neck, trying to sit quietly so that no one noticed me until I could bear the pain no longer. Then, with tears running down my face (nose as well!) my teacher would send me to the nurses office who would call my parents to come pick my up. I would cry and moan by myself in the nurses office for about the 20 minutes it took for my parents to get there. By the time they arrived, the HA was just about gone. I blamed the HA s on the musty smelling text books we used in that class, or the uncomfortable crooked seat. I'm sure everyone else thought I was just trying to get out of class. I thought it was interesting that several people have mentioned teeth probs. Around that same time I had some dental work done and there was some problem with the novacaine not working. I remember being in that dentist office for a LONG time with that dumb "rain coat" thing they put on kids which wires their mouth in the permanent OPEN position. I thought my jaw was going to pop. They ended up giving me extra doses of novicaine, which still didn't take well. Thus began 23 years of living hell. I'm currently in the peak of a cycle. Found a dr. willing to give me a course of pred., amerge. propranol, and another dr put me on O2, 4 years ago. Knock on wood, I haven't had one in 3 days!!!
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cazman
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Re: Remeber your first CH attack?
« Reply #22 on: Jul 24th, 2004, 1:41pm » |
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it was 1993 june i was asleep and was woken by the worst pian i ever felt in my life and that comming from a guy that fell 45 ft out of a tree at work and broke many bones this pain made that seem so very mild it lasted about 1 hr i didnt think much of it at the time thought it was a one time thing boy was i wrong three days later it happened again my girl friend at the time was totally freaked out by what it did to me i was redused to a big crying baby to a total freaked out begging her to hit me with a bat and knock me out , the next night it happened again this time she took me right to the er they gave me two shots of demeral and o2 this lasted about two weeks i went to a doctor cause i really thought i had a tumor the size a baseball and i was gonna die wich at that point was good for me he said it was a sinus infection and gave me antibiotics two days latter they went away for a full year .
they came back a year later and much to my surprise they were way worse this time but i had no insurance so i just got thru it they only lasted about twoo and a half weeks . i went to dentist chiroparctors everyone i thought could help nobody ever ones said the word clusterheadache to me it was last year at this time i went on the internet and punches in headache and i found this place , this wonderful godsend of a website i cryied for three hours as i read what you all have been thru and i finally knew what it is and that im not alone just that in its self makes living thru this hell 3 or 4 times a year just a little bit easier to deal with 6 days ago i started a new med and so far its working great
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sandie99
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Re: Remeber your first CH attack?
« Reply #23 on: Jul 28th, 2004, 10:23am » |
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Unfourtainly! September 2001. I wonder why....?
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vig
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Re: Remeber your first CH attack?
« Reply #24 on: Jul 29th, 2004, 3:55pm » |
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Hell YES!
('nuff said)
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