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nojo
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Yet Another Newbie  
« on: Jan 20th, 2004, 8:30pm »
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Greetings to all fellow sufferers, and strength to all their families.
I am 53, and suffering from my 18th. Birthday. (What a present!!)
Long history of neurologists and operations, sadly to no positive conclusion, and three weeks into a very heavy cycle, the hardest for over eight years. Imitrex injections and  Relert (eleptriptan) both work well, and fairly fast.  During the quiet periods, I used Temigran, until it went off the market last September. I went over to Cafergot, but at the end of October, that was unavailable here too. It returned to the market a week ago, and I can feel a decrease in severity.
Has anyone any comments on this.  I would also be interested to know if lying down, either sleeping, or laying awake (eyes open) brings on a  CH, as it does with me.
 
nojo
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ckelly181
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Re: Yet Another Newbie  
« Reply #1 on: Jan 20th, 2004, 8:38pm »
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Welcome nojo...from Israel??? Very cool.
 
You'll hear many times to read, read, read the links on the left of the page. There's so much good info there!
 
I will instantly get hit hard when I take a nap. That's one of the things I hate the most - lack of sleep. I don't know about laying down - I try to avoid it in case I start to nod off.
 
pf times to you...
 
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Re: Yet Another Newbie  
« Reply #2 on: Jan 20th, 2004, 8:39pm »
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Welcome!!
 
Little Deb
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Re: Yet Another Newbie  
« Reply #3 on: Jan 20th, 2004, 9:06pm »
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Welcome NoJo.....
 
Stick around and read a lot.  You'll like it here.  Lots of info and nice peoplle.....
 
PFDAN to ya!
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Re: Yet Another Newbie  
« Reply #4 on: Jan 20th, 2004, 9:19pm »
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I wasn't able to take a nap for about three years--every time I tried I got hit BAD.   Even worse than at night.  Since I've been taking melatonin and have had relief I have really enjoyed a nap on Saturday or Sunday.  Never got them just from lying down, though.
 
Have you tried melatonin if you can get it?  It has helped several people.  O2 is great, too.  Some episodic clusterheads get a course of steroids and of course there is the fungal solution.
 
Congratulations for making it through 35 years of this and I hope you can get some relief soon.  
 
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Re: Yet Another Newbie  
« Reply #5 on: Jan 20th, 2004, 11:37pm »
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Smiley
Welcome to the board, nojo.
 
You'll find great support here and lots of folks willing to help, by sharing what info they have.
 
As far as lying down....I slept on the sofa for 3 weeks.  I propped a few pillows up so I wouldn't be lying flat.  It did seem to help me alot.
 
Hope you get the meds you need to fight the beast.
 
Let us know how you are doing  Wink
 
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Re: Yet Another Newbie  
« Reply #6 on: Jan 21st, 2004, 12:10am »
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Welcome aboard!  Glad to have you join us.  
 
I cannot lie down at night until I know I am through with them for the night, usually about 1:30 to 2:30, but sometimes later.  During the day usually not problem.
 
O2 is a real life saver for me if I can get to it early.  I would recommend it highly.
 
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Re: Yet Another Newbie  
« Reply #7 on: Jan 21st, 2004, 12:20am »
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Hi nojo..........do many people in your area have ch ?? Jus wonderin cuz at the last convention the doc had mentiond it bein sumwhat of a langitude related afliction.....did I say that rite (prolly not).......if not I am confuseing you....sorry. I jus found that to be a very interesting fact. Pam that gets her facts not fiction mixed up
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Re: Yet Another Newbie  
« Reply #8 on: Jan 21st, 2004, 9:37am »
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Welcome aboard, I hope that you can find help here..... Smiley
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Re: Yet Another Newbie  
« Reply #9 on: Jan 21st, 2004, 10:19am »
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Wondering why cafergot might have gone off the market in Israel?
 
Cafergot did/does work for me, unfortunately is contraindicated with zomig (zolmitriptan) which also seems to work weel as an abortive for me.  My neuro is trying topiramate (topamax) with me, an anti-epileptic as a preventative and took away the cafergot...
 
Luckily my CH never had much of a sleeping component maybe 10% of them woke me up at night...so I've never noticed if lying down or napping has had any triggering consequences.
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Re: Yet Another Newbie  
« Reply #10 on: Jan 21st, 2004, 10:26am »
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Hi Nojo,
 
i can't comment too much on your meds with exception of the imitrex which works for me really well with the injections.  Also verapamil CR in combination with melatonin is a good combo for me.
 
yes, rest/relaxation can cause a headache while in cycle.  The beast is happier when you're running around like a chicken with its head cut off and all worked up! LOL
 
Good luck and welcome to this board.
 
John
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