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        New Message Board Archives >> Oct-Dec 2003 >> Having a Rough Time with Clusters
        
(Message started by: sleepwalker on Nov 4^th, 2003, 6:03am)

Title: Having a Rough Time with Clusters
Post by sleepwalker on Nov 4^th, 2003, 6:03am

:'( This is my first time here; I've had Clusters for 17 years; I'm a 51 yr old woman; and I work full time. I'm in my 7th week now of my cluster cycle; and am taking all kinds of meds; but none are working this time. I feel like the only person in the world who almost understands my pain is my wonderful husband (and my cat). Even my doctor just doesn't seem to get it. People I know look at me like I have two heads; or I'm crazy.....actually, I feel like I'm going crazy this time. I'm just trying to keep it together, until these awful things go away til the next time. Thanks for listening.

Title: Re: Having a Rough Time with Clusters
Post by BarbaraD on Nov 4^th, 2003, 6:30am

Welcome to the world of Clusters and to Clusterville. WE UNDERSTAND.... Most of us on this MB have been there done that.

You're lucky if you have anyone who understands. Keep him handy.

There's a world of information here - pull up a chair and read READ read. The archives are a great place to start. If it's been done or thought of, it's probably there somewhere.

Feel free to say whatever you want here - we're here for support. Like I said, WE know how you feel cause we're in the same boat. I've been dancing with this demon for more years than I want to remember.

Get information from here and TAKE it to your doctor. If he doesn't understand FIND a new doctor who does. They're having to be educated on CH. We've got the info available, but sometimes you gotta make sure they READ it or have it read to them as the case may be.

Hope you find something that works for you soon. And stick around here. Ask questions. Someone can help you.

Hugs BD

Title: MANAGEMENT OF
Post by Bob_Johnson on Nov 4^th, 2003, 8:06am

If your doc is open to learning from you, strongly suggest you invest in the first book (below). It's written for physicians and so probably more acceptable.
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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.

Title: Re: Having a Rough Time with Clusters
Post by grumpett on Nov 4^th, 2003, 8:21am

so sorry you are having a bad time right now.
I just finished a cycle and was hounding my dr. for imitrex and o2.
He was very hesitant. Finally sent me to a new nerologist and she was very incouraging for help!
I had not been to one for 15 years and they have come along way since then in understanding and help. If you have not seen one lately, you might want to try again.
Glad I did.

Good luck

Title: Re: Having a Rough Time with Clusters
Post by ZAIRA on Nov 4^th, 2003, 8:38am

Hello, I am a CH sufferer like you, unfortunately! :'(

I am afraid that the beast is still alive and visited you.

The beast has the capability to come in the time you do not expect, it has to be our hability that to go on... :'(

What do you take for your CH? As therapy I am using Lithium and Verapamil. This is the cocktail I use to relieve pain and it works. Oxigen and Imitrex during the attack.

I suffered alone for many years and 2 yrs. ago I found OUCH. Maybe we’ll never recover from this "disease", the way is looooong and difficult but now you can face the situation with a different spirit :). All you feel, we also feel. Keep fighting, you are not alone. :-/

A hug for you [smiley=hug.gif], Zaira

Title: Re: Having a Rough Time with Clusters
Post by cathy on Nov 4^th, 2003, 6:42pm

Sleepwalker Hi and welcome to the board, there are so many people here who can help you through the tough times, hang in there...what meds are you on, do you have O2...

Sending you PF vibes.

Cathy

Title: Re: Having a Rough Time with Clusters
Post by goaway on Nov 4^th, 2003, 7:17pm

Welcome to Sleepwalker!!!

Many people posting to this board have great advice on medicine.

Me? I'm just here to say[size=10HOPE YOU FEEL MUCH BETTER REEEEEAL SOON!!!!!][/size]