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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> Another New Member (from Colorado)
        
(Message started by: jlk on Feb 25^th, 2007, 11:21pm)

Title: Another New Member (from Colorado)
Post by jlk on Feb 25^th, 2007, 11:21pm

Sorry! Given my incredible tech ignorance I've posted without doing an introduction. I hope this doesn't result in a demotion or something. Anyway... allow me to introduce myself:

I am a 45, blonde blue-eyed woman; I have found this cuts no ice with these headaches. I started having clusters at 20. It was a severe pain in one eye with that same side of the face aching. The headache got my attention as an unusual headache because I wound up in the ER a few times. It was a very unpleasant experience being treated like a drug addict (I collapsed alone on the street and arrived unable to speak coherently). The second time Mom was with me and explained to them while keeping me from pulling my hair out. Anyway, I learned that it is critical to calm myself if I wanted to avoid ERs. My headaches are chronic and occur 2-3 times per day on a daily basis when things are bad and only one time or none for a week when things are good.

I became the human guinea pig that tried everything from O2 (can you believe it made me nauseous?), through lithium carbonate, verapamil, botox, etc. etc. Nothing has ever worked but imitrex to treat them. For a preventative, I discovered I have fewer headaches if C-1 vertebrae in my neck is in the proper place. I know this is odd, but it has helped.

I still have some wrinkles that I'd like help in working out. The first is that I tend to get sick more often than other people and think it is because I get run down from the headaches. I exercise, have a good diet, sleep a fair amount, etc. but it isn't good enough. Any thoughts? Also, I can't tank up on caffeine any more; it's not good for my ability to stay cool at work. The imitrex usually takes 20 min. to kick in. Any thoughts? Finally, I''ve tried fighitng with my insurance co. by appealing and having my doc submit lengthy records but can only get 9 imitrex per month which really doesn't cut it. Short of suing them, anyone else having better luck?

Thanks for your help!

My friends call me Jules

Title: Re: Another New Member (from Colorado)
Post by stressedchef on Feb 27^th, 2007, 2:05am

Hi I too am in colorado......I wonder if the season clicks for people in the same area.....just a thought I am in the end of a cycle right now hoping it will be a very long time before they return....I went 3 years between the last ones.....at least I know whats wrong with me now this bieng only my second cycle....I now have the meds to fight.......Keep the faith....and try the red bull if you havent it worked for me.......wishing you pf days and nights......Isaac ;)

Title: Re: Another New Member (from Colorado)
Post by Bob_Johnson on Feb 27^th, 2007, 2:03pm

Unfortunatelyl, variation in the experience of CH is all too common as it variation in the effectiveness of meds.

I assume that you have a doc who is experienced dealing with difficult headache conditions. If not, finding such a person would be high on my list. If you need suggestions, get back to us.

Much good reading available:
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.

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http://www.headachedrugs.com/pdf/ha2006.pdf Dr. Robbins site. Then explore the entire site by deleting everything following. com/ and then hit enter.
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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

Title: Re: Another New Member (from Colorado)
Post by marlinsfan on Feb 27^th, 2007, 2:52pm

on 02/25/07 at 23:21:54, jlk wrote:

The imitrex usually takes 20 min. to kick in. Any thoughts?

Hi Jules!
Are you using tex pills, injections or nasal spray? Based on your response time, it sounds like pills. Most of us use the injectors.
PF wishes.

Title: Re: Another New Member (from Colorado)
Post by jlk on Feb 27^th, 2007, 4:30pm

Thanks very much for the resources!! I'll check them out. I do the trex pills which usually kick in within 20 minutes. Needles freak me out and I hate the inhaler. How bad is doing the injection when someone is driving a hot screwdriver through your head? Just a chicken asking...

This is really ironic but I haven't head any headaches since checked out the site for the first time four days ago and read the tip about drinking lots of water. I'm sick and on antibiotics so I figured it couldn't hurt and might help since you're supposed to get alot of fluids when you're sick anyway. No headaches for four days!!!!! This may just be a fluke since I go this long without headaches when my neck is in but it is not common. If drinking water does it when all the meds and voodoo haven't I'm going to laugh. Meanwhile, if I weren't sick I'd go leap tall buildings at a single bound!!!! Thanks for that suggestion, I'd like to propose a toast with a tall glass of water!

p.s. Isaac from Colorado: It is our freak weather that is giving you clusters. There's a formula having to do with feet of snow. Hope your clusters end soon! [smiley=laugh.gif] [smiley=laugh.gif] [smiley=laugh.gif] [smiley=laugh.gif] [smiley=laugh.gif] [smiley=laugh.gif] [smiley=laugh.gif] [smiley=laugh.gif] [smiley=laugh.gif]

Title: Re: Another New Member (from Colorado)
Post by jlk on Feb 28^th, 2007, 10:11pm

So much for tons of water will stop my headaches. I've started getting two a day. It may be the change in the weather. I wonder how many cluster patients are affected by that? Anyone else out there?

Also, any suggestions for what to do if it's night time, you're getting a headache and Red Bull or coffee will keep you up all night? :'(

Title: Re: Another New Member (from Colorado)
Post by daniel96 on Mar 2^nd, 2007, 7:56pm

on 02/28/07 at 22:11:27, jlk wrote:

Hi jules, I did tried on the red bull therapy. Its works on me when I get the first sign and I drink it one shot. Its must be very cold , mix with ice. But red bull if you drink at night, you cant sleep lol cause its a energy drink. Anyway I am skipping red bull for the moment. Going to try O2 instead. cause I feel too much red bull not gd for health.