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Topic: CH vet, new MB member (Read 371 times) |
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usn_skwerl
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CH vet, new MB member
« on: Jul 10th, 2007, 9:00am » |
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hey folks, i just found this message board about 20 minutes ago, while trying to find something to distract me from an attack. ive had episodic CH's for about the last 7-8 years that i can remember for sure.
they usually rate between 7-9 on the kip scale, with a 9.5 once. 99% on the left side.
im surprised there are so many more folks out here with the beast riding on their shoulder. (has anyone figured out a 100% solid way to make the beast stop biting our skulls?) -sorry..bad joke
im glad i found this board, its really opened my eyes to different treatments. my biggest mistake was that while i was in the service, i didnt go to "medical" (the doc) to get it documented....but hindsight's 20/20.
im glad to be here, and know i have a place to go when my brain's on fire and my eye is slammed shut. i think we'd all be a little more hostile if we all interacted in real time when we're fighting off this blasted curse. much love, thanks for being here, and letting me hang out!
Jeph
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Bob_Johnson
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Re: CH vet, new MB member
« Reply #1 on: Jul 10th, 2007, 9:17am » |
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If nothing else, this place will keep you busy! Much good information to be gleaned by exploring the button (left) and following the leads and from doing some organized reading. Suggest you start with:
MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $59 at Amazon.Com. 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.
==== Also,
http://www.headachedrugs.com/pdf/ha2006.pdf Dr. Robbins site. Then explore the entire site by deleting everything following. com/ and then hit enter.
And,
Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S. (2002)
http://www.brightok.net/~mnjday/chtherapy.pdf
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Bob Johnson
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Guiseppi
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Re: CH vet, new MB member
« Reply #2 on: Jul 10th, 2007, 10:18am » |
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Hey Jeph welcome to the board! What have you tried that's worked in the past? I haven't found a "cure" yet but I'll give you my current routine. Allows me to lead a "normal" life most of the time whether in cycle or out.
I'm 47, male, episodic, usually 2 cycles a year spring and fall 8-12 weeks. When my cycle starts up I do a prednisone taper, 80 mg a day down to zero over 10 days, while I'm doing that I'm starting back on lithium..... (Never tell your friends you take lithium they start talking REALLY softly around you)....I build up, over several days, to 1200 mg a day. At that level I will block 80-90% of my headaches, as long as I avoid my triggers, alcohol, sleep disruptions and stress.
For the break thru headaches I use oral cafergot in concert with oxygen, and occasionally I have to resort to the imitrex jab when I'm losing.
You will hear many, many people preach oxygen, if you're not using it yet get it. No side effects, will usually abort a head ache for me in less then 8 minutes. Welcome to the board, Bob is right you have much reading to do. If you rely only on your doctor for this malady you will hurt a lot needlessly.
Guiseppi
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usn_skwerl
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Re: CH vet, new MB member
« Reply #3 on: Jul 10th, 2007, 10:50am » |
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thanks for the pile of info, guys. i have read some of that already, and will read more when i have time.
my treatments usually include ibuprofen or aleve before bed, or before getting into the "shadow" period of the headaches, and my VERY supportive wife makes me some chai tea with a lot of milk, and a lot of sugar. she also has a "sleepy sleepy tea" she makes for me to help me at least get through weaker attacks or onsets. she wont reveal what she does, but states that theres nothing illegal in it. some kind of natural remedy apparently. seems to work.
the ibuprofen or aleve work well if i take 2 bfore sleeping. because the beast usually hits me within one to two hours after actually getting to sleep.
the problem had this week is that ive worked night shift (10pm-6am) for the last 2 1/2 years. im now on days, 6 am-2pm. sleeping pills were helpful to adjust, but the CH's take priority, so not only am i losing sleep from them, but even if i try to avoid the headache for one night with a sleeping pill, im still screwed because i cant take the sleeping pill and aleve at the same time!
the more i read, the more i see that O2 seems to be the way to go. i just wish it was as easy to access as it was to use some liquid oxygen when we had a rough hangover while i was in the navy. 
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DennisM1045
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Re: CH vet, new MB member
« Reply #4 on: Jul 15th, 2007, 9:35pm » |
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Hey Jeph,
Your best bet is to find yourself a good Neurologist. He/She will perscribe abortives like O2 and maybe Imitrex + preventives. GPs just don't know enough to be helpful. It's not their ballpark.
There are lots of options out there. But you have to get plugged in to a Neuro to unlock the medicine cabinet.
You are not alone. You never were. I'm glad you know now. Good luck.
-Dennis-
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GrandPotentate
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Re: CH vet, new MB member
« Reply #5 on: Jul 15th, 2007, 10:59pm » |
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The worst hits I ever had were after changing time zones by eight hours. The hits were hard and overlapping. Besides all the other stuff you will find on this site, a big help for me to is keep a really regular schedule. Eat, sleep, wake, coffee, etc as constant as I can throughout the cycle.
Oxygen - read upon it. It does wonders for many of us.
I hope you can find an outstanding Neuro. The average GP will only encounter 1 or 2 clusterheads in a career, and have a hard time grasping the degree of pain and the urgency to so something.
Welcome to the site; I'm sorry you had to come looking.
Jon
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Patrick_A
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Re: CH vet, new MB member
« Reply #6 on: Jul 18th, 2007, 7:41am » |
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Go find a competent Neuro. If you don't know of one, you can find one through this site or the OUCH site.
Good Luck,
Pa
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sandie99
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Re: CH vet, new MB member
« Reply #7 on: Jul 19th, 2007, 4:48am » |
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Jeph,
I'm glad that you found your way here! 
A good neurologist is a great asset in fight against ch, but unfourtainly not all of them know enough about ch. So the more you know yourself, the better. 02 has helped lots of folks in here.
PF wishes,
Sanna
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CH happends, Live anyway! PF days to us all!
"Do what you can and let God take care of the rest. Leave your heart wide open and always wish for the best" (Sanna Hillu)
"No matter how far out your dreams are, it's possible" (Marketa Irglova)
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