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Topic: So THIS is where you've been hiding! (Read 419 times) |
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Kilo
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So THIS is where you've been hiding!
« on: Aug 25th, 2002, 7:45pm » |
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I could have sworn I was the only one in the world who had these suckers! I guess it would be the altruistic thing to say that I wish I were the only one, but I'm shamelessly glad you folks are out there.
Briefly:
I've had episodic CH for nearly 30 years. Been really lucky in that I only had to live through 2.5 four-month-long episodes without effective medication. Midway through my third episode, when I was in my mid-twenties, my neuro put me on verapamil and it's been remarkably effective--up until now. I think this most recent episode was triggered either by a severe cough from a nasty respiratory infection this summer, or by a course of prednisone one doctor used to treat it. Either way, my usual 480 mg of verapamil has simply not been effective. Had several kip 5-6 headaches break through while I was on vacation. After I came back, I independently increased my dosage to 720 mg daily. Had one kip 8 that sent me to urgent care, then several PF days/nights.
"Gee," I thought naively, "I guess that's it for this episode." I guess the problem was that I knocked on paneling that was really only a PICTURE of wood, because lo and behold, the beast woke me up at 4:00 this morning and gave me a kip 10 beating for two hours. After two worthless Imitrex tablets, several ice packs, and numerous deep dents in walls and furniture, I finally became exhausted enough to sleep. I have never hurt so bad nor danced so energetically. Would have gone to the ER, but I didn't dare drive myself and there was nobody around to drive me.
OK, so it was not all THAT brief. Sorry.
So, what have I learned?
1. Imitrex tablets, no. No, no, no. Just no.
2. Find some real wood next time.
3. I am very lucky to have stumbled across this site.
Sure hope that in the future I can give some of you back the help and hope and diversion I've gained from reading your posts over the past week, and I'm really looking forward to reading more of them.
Your sister in clusterdom,
Kilo
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2late
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Ride Free..Pain Free
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Re: So THIS is where you've been hiding!
« Reply #1 on: Aug 25th, 2002, 8:04pm » |
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Welcome aboard kilo!!!, glad to meet ya!!,sorry to hear you been dealin' with the beast so long,but as long as you are you might as well be here.you'll get alot of knowledge & support.as far as immitrex,tried the pills & nasal spray didn't do a damn thing for me,the injections work very well though. have u tried oxygen?that also works wonders for me, glad u found us. ..............2late
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Charlie
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Re: So THIS is where you've been hiding!
« Reply #2 on: Aug 25th, 2002, 8:05pm » |
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I'm glad you found us. While I enjoy meeting other clusterheads, I don't like having to meet because of this horror.
I'm 56, my first attack was in 1969 at 23, my last one was April, 1991. I know how lucky I've been and I'm hoping never to meet with the beast again. Mine were episodic, lasted usually about 20 minutes and my cycles were usually twice (sometimes more) a year in fall and spring. Unlike most others, the beta-blocker, Inderal was very effective along with the technique described in following link from my old neurologist:
http://www.chhelp.org/circ.html
Stick around, read the site and our little board, and don't take our nonsense too seriously. Some of us have been here too long..... 
Let us know how you're doing.
Charlie
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There is nothing more satisfying than being shot at without result---Winston Churchill
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Drk^Angel
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Re: So THIS is where you've been hiding!
« Reply #3 on: Aug 25th, 2002, 8:13pm » |
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Welcome to the board! Sorry that the beast is usin' your head as a wreckin' ball, knockin' against a steel reinforced concrete wall, 'til your cranium falls apart, then using hydrocloric acid to stick it back together, so that he can start it all over again. Welcome to the family!
PFDAN........................ Drk^Angel
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Edna
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Re: So THIS is where you've been hiding!
« Reply #5 on: Aug 25th, 2002, 10:23pm » |
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sorry to have to welcome you here, but glad you found us! Hoping to meet you in chat soon and wishing you well with your cycle.
Plenty of good people with lots of knowledge here, so stick around and read all you can.
wishing you pf moments,
EDNA
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Kilo
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Re: So THIS is where you've been hiding!
« Reply #6 on: Aug 26th, 2002, 12:31am » |
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Thanks for all the friendly welcomes!
Drk^Angel, your description is right on the mark. I think I'll take it to my [no doubt clueless] new neuro when I finally see her a month from now. Grr...
For those of you that asked, I had my first Imitrex injection a few days ago at urgent care. By the time they got to me, though, the beast had crawled back into his cavern, so I don't know how effective it was. I know the shot itself hurt like hell, but not like the Hell we know, eh?
I'll be going to urgent care tomorrow, beast or no beast. It's the only way to see an MD without a week's notice in my health plan. I intend to get O2 then and have written down all of the recommended specs from posts here, so I can combat the customary physician ignorance. Until tomorrow, though, I will NOT be sleeping. Oh no no no. Folger's is my best friend tonight.
Charlie, I must have come across your method in another post on this site, because I made some attempt to try it during my last HA. I'm afraid I was not very successful, though...every time I tried to concentrate on blood flow, my head swiveled around like Linda Blair's (or so it seemed) and I had to curse like a possessed sailor just to maintain the little bit of sanity I have left. Next time I hope to catch it earlier and give the redirection method a serious effort.
Thanks again, folks, for the warm welcome. I'll try to make it into the chat some evening.
And Charlie, don't worry about it. I never take ANYTHING very seriously!
Kilo
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NancyMcFree
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Re: So THIS is where you've been hiding!
« Reply #7 on: Aug 26th, 2002, 5:22am » |
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Welcome aboard. Ah, yes misery does love company. Sorry you have to be here ... but at least you are not alone. The oxygen & imitrex shots are a Godsend as far as I am concerned. Tried the imitrex nasal and it just took way too long to work. Lots of good info here .... read around, if you don't find it just ask.
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ChristineL
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Re: So THIS is where you've been hiding!
« Reply #8 on: Aug 26th, 2002, 6:47am » |
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Kilo,
Welcome.............if you get the Imitrex injections by prescription try the Imitrex tip on the left. I bought insulin syringes and transfered the syringe in the Epipen into 3 doses. This way you get 6 doses out of 2 and it was plenty to work. The insulin syringes are very small and might sting just a little but don't really hurt. You can buy syringes 10 at a time without a prescription or at least you can in Maine. Between that and the O2 my CH's are gone in minutes!
I also gave my pharmacist the NDC code to buy the Imitrex by single dose vials. I am waiting for them to come into the pharmacy.
Chris L
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RichardN
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Re: So THIS is where you've been hiding!
« Reply #9 on: Aug 26th, 2002, 7:15am » |
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Hi Kilo and welcome
The six months I've been here have saved my life........you can't find a better bunch of caring/sharing/informed lunatics anywhere. We all know the steps to "the dance", and understand your pain.
Hope the 02 works as well for you as it does most (70%) of us. Truly a godsend.
Read, read, read and copy pertinent info for your doc.
Come over and play, curse, rant, or question......ANYTIME......there's always someone awake here.
PFDANs Richard
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I can live with the beast as long as I don't have to "dance" with the bastard.
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oringkid
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Re: So THIS is where you've been hiding!
« Reply #10 on: Aug 26th, 2002, 9:54am » |
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Welcome Kilo!
There is more info here on CH than anywhere else.
Check out the OUCH site (button on the left) and join!
We are crazy but caring. 
Sherry
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nancyc
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Friends don't let friends post drunk on mbs......
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Re: So THIS is where you've been hiding!
« Reply #11 on: Aug 26th, 2002, 10:57am » |
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Hi Kilo and welcome ....now you are stuck with us lunatics.. ;D...one of the few times i have gone to the ER, the doc there told me if you dont take the imitrex injection rite away, it wont work..i had been one hour into the dance and he tried it anyway but no luck...if you take it as soon as the beast appears, he will back away fast...good luck....  nancyc
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echo
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Re: So THIS is where you've been hiding!
« Reply #12 on: Aug 26th, 2002, 4:55pm » |
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Welcome to the family Kilo. Sorry that you needed to search out a site such as this. It's a great place!
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"If you love something, let it go. If it doesn't come back, hunt it down and kill it".
Proud Dad of a US Marine, and a former Marine turned Police Officer.
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Linda T
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Re: So THIS is where you've been hiding!
« Reply #13 on: Aug 26th, 2002, 8:18pm » |
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Hi Kilo: Sorry you're having such a rough time right now but welcome aboard.
I'm with Charlie. Been taking Inderal LA since April and it gave me my life back. I know this doesn't work for many but it might be worth a shot.
Good luck and wishing you PFDAN always, Linda T
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What a long, strange trip it's been!
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