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fubar
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Your very first real cluster headache
« on: Mar 26th, 2004, 3:50pm » |
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I know it sounds stupid, how could you know it was a cluster headache if you only had one, right? One hardly consitutes a 'cluster'... But you know what I mean... Personally, I knew the moment I had the first one that something was very wrong, that this was pain unlike anything I had ever experienced, and I had been having migraines as long as I can remember (even in elementary school)
My first CH was while I was water skiing. It was a beautiful sunny day in Spring, and I was having a wonderful day on the Delta with friends. We were bbq'ing and drinking and getting ski runs in all along. We had several boats tied up and anchored while people were taking my ski boat out. I went on a run, stayed dry the whole time even though I was pulling off some pretty sick moves complete with jumping the wake and 360s and such. As I was winding it up, just about to let go and gently come to a stop, the beast siezed control of my head and my body. I froze in terror that I had just busted a blood vessel, maybe an anyurism I don't know. All I knew was I could not even twitch. I went face down in the water and was unable to move. I was somehow holding my breath, gritting my teeth, wondering how I was going to get air. Next thing I knew I was being grabbed from my backside and hauled into the boat. I spent the next couple hours in the cabin of the big boat wishing I would justy die. I had no idea how many times I would be thinking those thoughts again.
It was about 10 years before I had a real diagnosis of CH. 10 years of not knowing why my life sucked. 10 years of being treated for god-knows-what-they'll-call-it today. Sinus. Migraine. CPH. whatever.
So, tell us what your first encounter was like.
-Fu
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Superpain
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Re: Your very first real cluster headache
« Reply #1 on: Mar 26th, 2004, 4:36pm » |
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Very painful?
Too long ago to remember...
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Chris
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Jayne
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Re: Your very first real cluster headache
« Reply #2 on: Mar 26th, 2004, 4:46pm » |
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I was living in Miami. I was in the shower washing my hair getting ready to go out with my friend. I bent down in the shower to pick up the shampoo bottle the BAM
it didn't creep up it just hit me full force like ssomeone had hit me across the left side of my head with a baseball bat. I literaly fell out of the shower suds all over my hair and ran to my room and writhed around in pain thinking to myself.."ah an ambulism I'm about to pop off" Then I wondered if this was a meegraine, as I had never had one before. I ASSUMED that was what was going on and felt so sorry for everyone I knew that had migraines.
It took several more months before I went to the doc (My pupil stopped working that's why I went) and got a corrrect diagnosis. That was my first and I will NEVER forget it.
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stuey
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Re: Your very first real cluster headache
« Reply #3 on: Mar 26th, 2004, 4:51pm » |
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My first time was in the village in NYC seven years ago. I went to a bar and had two drinks. Things were not good on the homefront so sometimes I would stop and drown those problems away. Well I decided to leave and wasn't anywhere near drunk. I walk about 5 blocks when this fucking thing hits me. I didn't know what it was but that I had never felt that kind of stabbing icepick pain. I was cursing, cursing people, cursing God and I must have eaten 14 advil. Of course that does nothing for the pain. I had no idea what happened to me. I don't recall exactly how long it lasted, but far too long. Afterwards, I thought it was somehow an isolated instance until the next night I was wakened from sleep by this thing and started getting 2 to 3 a day and always waking up about the same time each night with this son of a bitch. They were still going after two months when I was finally diagnosed. I did consider dying would be better than what was happening to me. That triptans were there for me I was thankful. That others had endured these things for years without triptan drugs is beyond my comprehension. Then I happened upon this site and knew I wasn't the only one with these things. I get emotional as I'm sure everyone does when you think how they just came outta no place. I had always had bad headaches and assumed it was because of high blood pressure. Never would I have thought that this kind of pain existed or that somehow you get through them and survive them and you're not stroking out. Well this was way too long. Stuey
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stuey
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Re: Your very first real cluster headache
« Reply #4 on: Mar 26th, 2004, 4:53pm » |
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Unfortunately, the first CH experience was more memorable than my first sexual one. That was just plain funny.
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pubgirl
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Re: Your very first real cluster headache
« Reply #5 on: Mar 26th, 2004, 5:21pm » |
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Woke up in agony, terrified, terrified, terrified. Thought I was dying.
Will never forget it as long as I live. Will always have sympathy for new sufferers until they get the right treatment and until the fear abates.
Wendy
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Lissa
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Re: Your very first real cluster headache
« Reply #6 on: Mar 26th, 2004, 5:26pm » |
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My first one was when I was 15 or 16. I woke up one morning before school and there it was. I don't even like to remember that day.
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echo
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Re: Your very first real cluster headache
« Reply #7 on: Mar 26th, 2004, 5:29pm » |
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Thought I'd blown an "O"ring in my head. Only took a dozen or so years to find out what the hell it was.
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Karla
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Re: Your very first real cluster headache
« Reply #8 on: Mar 26th, 2004, 6:19pm » |
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I had awoke with vertigo that day and it lasted off and on throughout the day. I remember laying on the floor to start my brand new exercise program. I did one situp and bam I got floored with a cluster headache. I literally thought I was going to die. I thought if this is what exercise does to me forget it I will remain exercise free the rest of my life. lol I litterly thought it was related to the vertigo and thought i had an anurism or brain tumor. I wasted no time in getting to the dr and gettign all the serious things ruled out. But I saw my reg dr who wasn't to knowlegeable and he thought it was migraines. At that time I was just so relieved that I wasn't going to die. I hadn't quite figured out yet that I was going to be chronic and get hit 8x every day and that I would have been better off with the brain tumor.
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Karla
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jonny
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Re: Your very first real cluster headache
« Reply #9 on: Mar 26th, 2004, 6:26pm » |
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I had just come back to the base camp after a week long trek to the summit of Mt Everest, I was only in the hot tub maybe 30 minutes with the Swedish bikini team when it hit. The pressure in my head was equal to that when I was scuba diving the wreck of the Titanic. All I could think of was maybe it would be as bad as when we hit re-entry coming back from the moon.
My life is hell on earth 
.................................jonny
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pubgirl
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Re: Your very first real cluster headache
« Reply #10 on: Mar 26th, 2004, 6:29pm » |
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on Mar 26th, 2004, 6:19pm, Karla wrote:| I would have been better off with the brain tumor. |
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Not this again.
I hope you're joking Karla 
Wendy
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| « Last Edit: Mar 26th, 2004, 6:44pm by pubgirl » |
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Kevin_M
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Re: Your very first real cluster headache
« Reply #11 on: Mar 26th, 2004, 9:17pm » |
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I just started having them after I stopped 27 years of creative "self medication". I had heard that a gas leak can give you bad headaches so I had a friend come over with a meter. No gas leak, besides they put a smell in the gas for that purpose. Had no idea.
Finally saw a doc, he mentioned migraines. I just looked and said, "NOT LIKE THIS."
I described my long scientic orbit around Saturn to him and he said it was snot likely anyone would be interested in my brain out there.
Then he asked me if I had ever fallen from the peak of Mt Everest. I said, "yeah, someone pushed me. I think he was planting a black flag with a scull on it."
He prescribed not flicking but rather eating...
Kevin M
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kim
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Re: Your very first real cluster headache
« Reply #12 on: Mar 26th, 2004, 9:22pm » |
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How the Hell would I know. I was only 12.
First cluster memories are being hit while hangin at middle school - up at the tennis courst - i had to go away and let it rip....i did not tell folks about it. Could not remember FIRST cluster headache. Looking back, i can't seem to recall how it was at the very START. I was a kid. I dealt with it kinda like when you get kicked in the stomach. It takes everything away, but then life goes on.
I think kids deal better with chronic pain than adults. Kids hurt 100% honest and then they just wanna play....
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Charlie
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Re: Your very first real cluster headache
« Reply #13 on: Mar 26th, 2004, 9:50pm » |
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1969. I think it was early August just before my 23rd birthday. A Johnny Carson rerun was on and I was sitting in my chair drinking coffee. Wham. There was no buildup. I got up and began to wear out the carpet pacing while thinking that it was over...stroke, tumor, or some other godawful thing. It was short, probably 10 minutes and didn't return for at least a week. I can't remember exactly.
In 1962, I had a terrible pressure “headache” when a Allegheny Airlines pilot dropped us very fast over Newark, New Jersey. It lasted about a minute or so. Until my cluster attack 7 years later, it was unique. It was just as bad but not at all scary or debilitating like this effen thing.
They lasted another 22 years until 1991 when I was 45...and no: I don't know why. Your turn folks.
Jonny, so that was you then going through the first class wardrobes on deck. You probably got more stuff than I.
Charlie
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Lizzie2
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Re: Your very first real cluster headache
« Reply #14 on: Mar 26th, 2004, 10:02pm » |
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My first real cluster attack, while very memorable and eventful to ME, did not happen while doing anything interesting or exciting! It was just me, myself, and I sitting on my bed in my apartment watching some tv. A couple hours later, my friend was hauling my butt to the ER. That was last November.
The attacks leading up to the first full blown cluster definately took place during some interesting things! Got a few while driving to and from campus. Never fun. And the most special ones, I'd get while figure skating. Try landing a toe loop when all the sudden you've got something stabbing you straight through the eye and into the brain. Aieee!! Those were some interesting times. One day I was practicing back crossovers, and I had to get off the ice the stabbing pain was so bad. My teacher thought I'd fallen and hit my head. Well I had done that once before, so she had reason to be concerned. And I guess i WAS acting pretty darn weird! Those initial stabbing headaches before I got full blown clusters lasted 10-20 minutes about.
It's funny cuz I've been thinking a lot about my upcoming graduation and how my life has changed since coming t o college. I can remember what I was doing 5 minutes before I got my NDPH. I can remember what it was like getting through school with that, and then dealing with the clusters when they came along (although that is a more recent development!). Wow...I think I grew up a whole heck of a lot since coming to Penn State with all these experiences!! A lot more than the people who have just partied, gotten drunk, and gone to football games!!
Lizzie
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MarkV2
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Re: Your very first real cluster headache
« Reply #15 on: Mar 26th, 2004, 10:29pm » |
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Quote:| In 1962, I had a terrible pressure “headache” when a Allegheny Airlines pilot dropped us very fast over Newark, New Jersey. It lasted about a minute or so. Until my cluster attack 7 years later, it was unique. It was just as bad but not at all scary or debilitating like this effen thing. |
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Wow Charlie - I had my 2nd CH in a prop plane that depressiorized (sp?) too fast. I was asleep and woke up with a pain that felt like my brain was going to crack thru my skull. I was tearing out of my right eye uncontrollably.
1st one was on a work trip to Cinci in a suburban. Again, thought my skull was going to crack.
Both were unique, and were the only ones I had each year in the early 90's. They were completely different from when I went chronic over 10 years later.
Mark
PS never had a normal headache (except for a hangover) in my life.
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JDH
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Re: Your very first real cluster headache
« Reply #16 on: Mar 26th, 2004, 11:32pm » |
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Not real sure about THE first but they started happening in the fall of 1985 and I was at a Motley Crue concert on Thanksgiving night...was having a good old time but then it started ramping up but I kept trying to ignore it thinking it was the volume of the music, lol.
Then it quickly get's to the point of not being able to ignore it anymore so it's time for a walk and I'm thinking
"WTF! this is it, I'm dying RIGHT HERE RIGHT NOW!!!"
A night I can't forget...and I didn't even get to see the encores that night 
Jim
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Mr. Happy
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unreal cluster headaches
« Reply #17 on: Mar 27th, 2004, 12:07am » |
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It was a cold and stormy night in early November of `96. There were 7 of us, seated around the table..........out back....in the "shed." The table was covered with change and bills, the air thick and reeking of `rets, cheap pot and beer.
C'mon. Your deal, Jones.
I'm tryin, man, but something......my head.......right side.....
Yeah. Your eye is really bloodshot, man......you OK?
How the hell should I know. Gimme the bottle of Jack Daniels.......(chug chug chug chased with another beer).......phew......this ain't right, guys.........
A couple of minutes later, I dropped my hand of 4 Aces (which wasn't squat......3's, 9's, dueces and one eyed jacks were wild) and navigated towards the door.
You OK, Jones?
HELL NO I ain't OK. Check you guys later........
and _staggered_ all 50 feet to the porch door, falling twice. Made it to the sofa.
The future ex said "Wow......YOU'RE loaded", and went to bed. I rolled on the floor for however long, and woke up the next day wondering WTF.
Started again the next night at about the same time......grabbed a bottle of Jack and hammered down a tall glass.......cuz that's what you DO to ease pain and all, right? (Ah, youth.......)
Saw my doc the next day. "You have Cluster Headaches. Try and avoid alcohol." Got 2 Zomig tabs from him, and was told not to take more than 2 in one week. Sharp on the uptake, but a nitwit when it came to treatment.
The rest is part of our shared heritage,
RJ
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Tiannia
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Re: Your very first real cluster headache
« Reply #18 on: Mar 27th, 2004, 12:30am » |
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It was this summer guys. Remember I'm a noob here. lol
My mother-in-law drove down and picked up my daughter to go to Oregon for 3 weeks vacation. I was stressing because Krishara had never been away from home more then one night and that was just at my friends house because hubby and I went to the company Christmas party. They left about 9am and I was just the normal paniced mother all day. Around 5 pm I got slammed. Hit me so hard I ended up in my knees. Got to the bathroom as got sick. Shaun came in and thought my blood sugar botomed out, because I was sweating and just pale as hell. Ended up just staying there sitting on the bathroom floor banging my head against the wall. A little over and hour after it started it stopped. I was exhausted and very confused. Shaun made me eat some soup and I crashed. Figured it had to be a migraine, never had them hit that hard before. Figured to big deal, sleep it off and feel better in the morning. No such luch 3am and I was right back where I started.
After 2 weeks of hoping it would stop finally had my husband threaten to take me to the doctor over his shoulder, so I made an appointment. She said, "well it sure sounds like you have cluster hadaches, ut that is just not possible since you are a women." Did not realize just how ofter I would hear that phrase. 
-Tia
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Azrael
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Re: Your very first real cluster headache
« Reply #19 on: Mar 27th, 2004, 1:03am » |
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It was a dark, and stormy mid-summer's night when the gates of Hell opened up, and spit me out... Oh... Wait... Too far back...
The earliest one I can remember was when I was 11. I was sitting in the school's library, lookin' at some book, when I was suddenly floored by mind numbing, teeth shattering, body trembling pain right behind my eyes. Of course... Being the innocent age of 11, without the enlightenment of experience to give me the obvious thought of "WTF?!?", the only thought immediately in my mind was "OWWWWWWWWWWWWWWWWWWWWW!!!".
One of my friends saw me freakin' out, and helped me walk to the principal's office. Two hours of trying to push my eyes out through the back of my head with my bare hands, the principal looked at my eyes... Told me I was okay... And sent me out to catch my bus home. And they lived painfully ever after. The End.
PFDAN.................................... Drk^Angel
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Root
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Re: Your very first real cluster headache
« Reply #20 on: Mar 27th, 2004, 7:40am » |
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Lets see my first real cluster headache, as opposed to my first imaginary cluster headache. Occured sometime before my second real cluster headache.
If memory serves, which it usually doesn't was approximately 3:15 PM May 26, 1969 134' 27"W 44'47"N
Or there abouts. Maybe, sorta, well it was somewhere in that niehborhood anyway. I think.
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| « Last Edit: Mar 27th, 2004, 7:44am by Root » |
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Elaine
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Re: Your very first real cluster headache
« Reply #21 on: Mar 27th, 2004, 8:40am » |
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I will never forget my first Cluster. I was married to my first husband a real fucking jerk. I woke up screaming. My ex got mad and slaped me. He thought I had gone nuts. I drove about three blocks to my mothers house. I don't even know how I did that without killing myself. My dad took me to the ER. By the time they saw me the cluster was gone. My nights were like that just about every night. Till I divorced the B astard. For years I blamed him I thought the abuse he put me through caused it. Hell I think I will still blame him for it !
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Reese
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Re: Your very first real cluster headache
« Reply #22 on: Mar 27th, 2004, 9:12am » |
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My first cluster headache came about 8 years ago at a waterpark in Orlando,FL. I remember feeling brave and figured I would try the kamikazee? a 100ft vertical drop that rockets your body probably 40mph. As soon as I arrived at the bottom,about 5.5 seconds, I had the worst head pain I ever felt, never bumped or jarred my head just a smooth ride gone bad,I thought. It took a year or two before this type of pain came back but when it came it turned into cluster headaches. I think you know what my life has been like since.
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fubar
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Re: Your very first real cluster headache
« Reply #23 on: Mar 27th, 2004, 10:05am » |
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thanks for your stories (even you Reese  )
kinf of hard to forget for some of us
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john123
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Re: Your very first real cluster headache
« Reply #24 on: Mar 27th, 2004, 10:38am » |
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I don't remember particulars, something about being on the golfcourse (trespassing as a 16 yo), but I sure as hell remember the pain.
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