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Topic: here it comes again (Read 413 times) |
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bush_kangaroo
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here it comes again
« on: Oct 10th, 2003, 1:17pm » |
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Hi folks,
This is the first time I have made contact with other C'heads (I didn't know of the term until I came across your site today). I started getting them when I was 25 - 9 years ago, and for the first three years had them misdiagnosed as "trapped nerve" behind the eye, or migraine, until finally a doctor bothered to look in a book. Each time, they go I kid myself that they won't be back. The last lot before these was two years ago, but they have been back again for 4 weeks now, with the occaisonal "shadowy" day in between, and up to 3 attacks in 24 hours. Nothing helps apart from dancing round the room, banging my left eye with the heel of my hand, and asking god to forgive me for whatever it is I've done to upset him. Right now, I just feel knackered and want to die, and am prone to bursting into tears. But for all that, I am so glad that I have found this site.
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vig
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CHit Happens
 
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Re: here it comes again
« Reply #1 on: Oct 10th, 2003, 1:25pm » |
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welcome to the club.
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never, Never, NEVER quit. -Winston Churchill
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sucideheadacheman
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I love YaBB 1G - SP1!
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Re: here it comes again
« Reply #2 on: Oct 10th, 2003, 5:11pm » |
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Well I thought they were migraines too.
But I discovered cluster headaches and I am a suffering too. 3 weeks every day they arrive at the same time.
Wheeeeeeeeew what pain I though I was tough till I started crying from the pain.
In fact I paced around my house fro 2 hours like I was a caged animal.
I use Midrin it works sometimes, but immitrex is the best so far, going to try o2.
Just know that there are people like me suffering so much too.
I hate the pain it actually freaks me out. I t screws with my work and my life.
All the best and cheers to neing pain free
Sincerely
Paul In arizona
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bush_kangaroo
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Re: here it comes again
« Reply #3 on: Oct 12th, 2003, 5:39am » |
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Cheers paul,
I was given midrin which helped a bit because the pain I get pulsates and it reduces that, but there is a problem with the manufacturer and I've been told that there won't be any in the U.K until November.
Have finally got myself referred to a consultant at the hospital so will be asking him about a lot of the treatments mentioned on this site, including immitrex.
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Bob_Johnson
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Re: here it comes again
« Reply #4 on: Oct 12th, 2003, 9:10am » |
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Well, you start your life with Cluster about the "right" age, i.e., early adult onset.
Rather than randomly try this-and-that treatment, I'd earnestly suggest you buy the more expensive of these two books. It will organize your knowledge on how to care for yourself.
More importantly, if you don't have access to a doc with deep experience in teating headache, this book (written for physicians) will allow you to educate him. (We all have to find out whether our docs' ego will allow this!) But I've been blessed with a doc who is willing to let me guide him prescriptions as long as I can show him MEDICAL literature which supports my request.
(That your present doc is not well versed in cluster is an all too common experience in the U.S. & Europe. This doesn't mean you have a bad doc. The only issue is: is he willing to learn.)
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MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $49 at Amazon.Com. This volume is better organized and easier to read for nonprofessionals compared to Saper's book. It covers all types of headache and is primarily focused on medications. While the two chapters on CH total 42-pages, the actual relevant material is longer because of multiple references to material in chapters on migraine, reflecting the overlap in drugs used to treat. I'd suggest reading the chapters on migraine for three reasons: he makes references to CH & medications which are not in the index; there are "clinical pearls" about how to approach the treatment of headache; and, you gain better perspective on the nature of headache, in general, and the complexities of treatment (which need to be considered when we create expectations about what is possible). Finally, women will appreciate & benefit from his running information on hormones/menstrual cycles as they affect headache. Chapter on headache following head trauma, also. Obviously, I'm impressed with Robbins' work (even if the book needs the touch of a good editor!) (Somewhat longer review/content statement at 3/22/00, "Good book...."
HEADACHE HELP, Revised edition, 2000; Lawrence Robbins, M.D., Houghton Mifflin, $15. Written for a nonprofessional audience, it contains almost all the material in the preceding volume but it's much easier reading. Highly recommended.
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| « Last Edit: Oct 12th, 2003, 9:11am by Bob_Johnson » |
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Bob Johnson
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Prense
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Re: here it comes again
« Reply #5 on: Oct 12th, 2003, 7:32pm » |
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I never get a "pulsating" or "throbbing" feeling of pain with an attack...it's constant, and the increase/decrease in pain levels are definate.
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YMe
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Re: here it comes again
« Reply #6 on: Oct 12th, 2003, 11:06pm » |
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I'm not in any way qualified to get technical here but would strongly urge you to look into Imitrex, and most importantly TO TAKE IT AT THE VERY FIRST SIGN of a CH. I got caught with only one spray left this morning and no chance of a refill (I thought) for two more days, so better ration myself....
WRONGO! By the time I decided I really should take it, it was too late and proved ineffectual. So the whole day has been pretty much of the "wanna die" thing we're all so used to.
By the way, we really are so lucky, those of us who have found a drug that works if we use it properly. My mother used to suffer badly when she was younger and lost many days of work as there were no appropriate drugs available.
I can totally relate to that banging your eye with the heel of your hand. And when the pain moves up to the top of your head and you just want to squeeze it away as hard as you can... Drugs, my friend!!! I hope you find something that works for you really soon.
Michael in Montreal.
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BobG
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Re: here it comes again
« Reply #7 on: Oct 13th, 2003, 12:25am » |
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Bush_kangaroo…interesting name………Aussie?
Welcome to the board. Sorry your had a reason to come here.
Your post could have been written by every member of this board.
“C'heads (I didn't know of the term until I came across your site today).”
‘Clusterheads’ was invented by I-can’t-remember-his/her-name on this site.
“for the first three years had them misdiagnosed”
You were lucky you got the diagnoses so quickly. Some people go for many more years than that. But, that sure doesn’t make it feel any better.
“until finally a doctor bothered to look in a book.”
LOL…a lot of doctors wouldn’t have bothered to look up something they know nothing about.
“Each time, they go I kid myself that they won't be back.”
Yep, we’ve all been there.
"shadowy"
That’s another word invented on this board.
“Nothing helps apart from dancing round the room, banging my left eye with the heel of my hand,”
We’ve all been there. And banging the head on the wall, or table or floor.
“asking god to forgive me for whatever it is I've done to upset him”
You didn’t do anything to upset God. God didn’t cause the pain. The Devil did. God helps to heal.
“am prone to bursting into tears.”
We all are.
“But for all that, I am so glad that I have found this site.”
And we’re glad yo found us.
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| « Last Edit: Oct 13th, 2003, 12:26am by BobG » |
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Stay stressed. Never relax. Never sleep. Ever.
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