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Averiz
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Introduction
« on: Apr 28th, 2005, 5:30pm » |
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Hi! My name is Mike. I'm 39 and will be 40 in June. Not knowing what they were then, I got my first CH when I was 33, spent two months going to all kinds of doctors, fighting a sinus infection that didn't exist.
One thing I couldn't understand is how a sinus infection could wake me up every morning at 2 a.m. on the dot, no exceptions.
When I turned 34, almost like the movie "Same Time Next Year," the "sinus infection" came back. Determined not to go through this again, I tried different doctors, to no avail. They were still convinced I had a sinus infection. The only real difference when I was 34 is that aside from my usual 2 a.m. wake-up call, I was greeted after lunch or after dinner as well. My girlfriend at the time, mother, friends, nobody understood. I'd say I have a headache and they'd say "Take two aspirin and get over it."
Same time next year. Same time the year after that. If this story were only a trilogy, I'd be a very happy man, but unfortunately, there are many more years after this one.
This is the year it all changed. Instead of my one or two a day for two months, I was getting three or four a day and that bout lasted almost 10 weeks. I was losing my ability to work, play and just overall function as a human being.
Without going into details of day-by-day, year-by-year synopsis, I joined this board to talk and discuss because nobody else really knows how it feels. I've been reading the board here for a few weeks and finally decided I'd put my two cents in and join the club.
Yesterday was the worst day of my life. Starting at 5:30 a.m., I experienced seven Kip 10 headaches throughout the day. No sooner was I over one, did another start. Finally, at 2:30 in the morning my last headache never went away, it just went down to a 4 and stayed that way until 6:30 this morning. I was able to pass out or doze on and off and was delighted to get two hours of solid sleep from 6:30 to 8:30. I have been floating between 2 and 3 all day and am definitely afraid of what the evening hold in store.
I am not whining or whatever. I write all this because I know that everybody on this board has been at this stage at one point or another.
Yesterday was one of those days . . . I can't take Imitrex seven times in one day. I, like most, wait too long to take the Imitrex because of its cost. I am one of the non-insured, so it's kind of difficult for me to drop $1,000 or $2,000 a week on pain medication.
As a side note: does anybody's scalp feel like pins and needles? and, is anybody left-handed?
Anyway, that's who I am. no different from all the rest of you. Just wanted to introduce myself and I am glad this board is even here.
Mike
p.s. these are not headaches. we need to come up with another word! headaches I can deal with.
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yikes-another-one
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Re: Introduction
« Reply #1 on: Apr 28th, 2005, 6:28pm » |
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<p.s. these are not headaches. we need to come up with another word! headaches I can deal with. >
Amen, Brother. Preaching to the choir on that one.
Yeah, I been there.
After fighting throught 4 headaches duringthe day,
a 10pm one ramped up to a level 10, lasted until 11:3-, I got a 10 minute break and was slammed with another level 10 until 1am. Taking a Zomig at thatpoint was no-go. (even thought I did take it...nothing changed.)
It is hell. and we are brave soldiers,
battling the unseen monster.
Have you got access to oxygen?
I know a few even suggested running to the local
fire station and asking them for a non-rebreather....
sometimes it does help....
Best wishes for pain-free days and nights.
TJ
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Psalm 23 - Goodness and mercy shall follow US all the days of our lives and WE will dwell in the house of LOVE forever.
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Averiz
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Re: Introduction
« Reply #2 on: Apr 28th, 2005, 6:37pm » |
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I have used O2 in the past and it has worked So-So. No insurance is a bitch. We (Dianne, my main supporter) are going to try the trex spit and get 2 doses per shot instead of 1. I am not brave enough to try to get 3 out of it
-- What if it does't work 
Good Luck to you as well TJ
Mike
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Giovanni
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Re: Introduction
« Reply #3 on: Apr 28th, 2005, 8:00pm » |
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Hi Mike,
What kind of imitrex do you use---injects?
You might want to scan the kudzu post as it shows promise to a lot of people. Also, melatonin show some benefit to about 50% of us. For the big guns on perhaps limiting or preventing your next cycle check out
www.clusterbusters.com
You're right in knowing that we all know what you are going through. Wishing you a speedy exit from this cycle.
John
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Kris_in_SJ
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Re: Introduction
« Reply #4 on: Apr 28th, 2005, 8:47pm » |
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Hi Mike,
Welcome to the family.
Giovanni had some good suggestions for you.
I'm curious as to what preventative you're on - Verapamil or something similar?. Imitrex alone won't shorten your cycle or decrease the intensity of your HA's. It sounds like your cycle is peaking- when I'm at peak, I suffer constant 3-4 shadow pain - sometimes high-dose caffiene helps with those. I can almost deal with the shadows a little as long as I'm not getting hit with the 8-10's twice a day, and that's where the Verapamil has helped me most.
Sorry you have to be here, but glad you found us. Keep posting.
Hugs,
Kris
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Gator
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Re: Introduction
« Reply #5 on: Apr 29th, 2005, 2:56am » |
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Welcome to the asylum. Sorry to see another victim, but you are in the right place. Check your messages. I sent you some info that might help.
Hang in there. We all know where you are coming from.
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judkins
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at peace with myself..at war with the beast..
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Re: Introduction
« Reply #6 on: Apr 29th, 2005, 4:45am » |
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Mike I always leave the Imigran too late because I never know how bad the next attack will be.
I agree with you Mike.. none of us here suffer from "headaches".
Even if you give colleagues and friends the information to read..they still find it hard to grasp.
Hang in there Mike..
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Averiz
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Re: Introduction
« Reply #7 on: Apr 30th, 2005, 9:56am » |
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An update: A few years ago during a cycle I used a steroid and Depakote to try to shorten the cycle. Once my insurance ran out, I stopped, and coincidentally entered a remission.
For the last 48 hours, since my seven-headache day when I took far too much Imitrex (it's ironic that the CHs won't kill me, but the Imitrex could), I have been sick with a fever and stomachache. But I have also been PF! I have been drinking a glass of water every half hour and I don't know what's working, but I won't stop anything.
Today I am up and walking around and feeling sort of normal and still PF!!!
I have thought about asking a neurologist about a course of Depakote again, but am afraid of the psychological and sexual side effects.
Does anyone have any information on that?
Thanks to everyone for responding and for your support. Now that I know about this board I will be active, and will give my support to others when they need it.
Mike
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nani
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Re: Introduction
« Reply #8 on: Apr 30th, 2005, 10:20am » |
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Welcome Mike...sorry you're here. When you tried oxygen, did you use 10 -15 lpms and a non rebreather mask? Low flow with a canula won't help. Look at the oxygen info button on the left. Many folks use Depakote. Others use lithium (pretty cheap if you don't have ins) and verapamil. Do have a look at the kudzu threads. It's helped quite a few of us. Fully inform yoursef before you decide to try it. It's probably not a good idea to mix Imitrex and kudzu....but the kudzu's much cheaper and you probably won't need the trex after you get the kudzu dosing "right" for you. Look at all the links in the following thread. It's a lot of reading, but worth it. Good luck and pain free wishes, nani
http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action= display;num=1110584362
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