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        Cluster Headache Help and Support >> Getting to Know Ya >> New to CH.com not CH
        
(Message started by: Cycle_Dad on Feb 27^th, 2008, 1:27am)

Title: New to CH.com not CH
Post by Cycle_Dad on Feb 27^th, 2008, 1:27am

Hey there. My name is Brian. What a great website. I've been reading all day and have learned so much. O2 is in my immediate future. Great work everyone!!!

I had my first bouts with CH appx 17 years ago. I didn't have a clue what it was. I just knew it hurt like hell. I went through a few years of this with annual attacks lasting a little over two weeks with 1 CH a day lasting 15-30 minutes. (I now realize how easy I had it)

Shortly thereafter I started taking 2.5 mg of Zebeta daily for a different medical issue. The CH's went away for almost 12 years until I stopped taking Zebeta because I had built up an immunity and it no longer helped my other condition. Six months after stopping the Zebeta the CH's were back. I'm still not certain if the Zebeta helped keep the attacks at bay or if I was just lucky and had a 12 year remission. I went back on Zebeta, just to see if it would help, and the results have been inconclusive.

Since they returned I have been using Zomig and it has worked every time. The problem, as you all know, is that insurance company execs don't seem to have family members with CH. Since they have no clue they allow so little medication you frequently have to decide if you want to suffer tonight or tomorrow night. Of course, if you have a couple grand of disposable income each month you could fund it yourself.

My bouts have become increasingly painful, the episodes have increased to three a day and the duration has extended to well over an hour. Yesterday my thoughts were "poor me", "Why me", you know the rest. After scouring this site I once again realize how easy I have it.

I'm glad to know I have company out there. I just wish we could be talking about our hobbies rather than this affliction. It really is strange what brings people together, isn't it?

Here's to a night with no Dancing.

Title: Re: New to CH.com not CH
Post by Bob_Johnson on Feb 27^th, 2008, 4:29am

There is so much material here that it's always a problem to know where to start. But the most basic of items are a list of current therapies and some organized readings, hence, these two links. Then explore all the buttons (left) and their inner links.
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http://www.plainboard.com/ch/chtherapy.pdf

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)
===========

MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $50 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.

Title: Re: New to CH.com not CH
Post by Guiseppi on Feb 27^th, 2008, 10:21am

What Bob said! Start reading like a mad man. The problem with "unusual" condituions is most doctors will never see it so they know little about it. The majority of my success has come from getting the info, along with the research and studies to back it, off of this board, taking it to my doctor and convincing him to give it a go.

I'm glad you found us, hoping you catch some relief soon, these things suck!!! >:(

Guiseppi

Title: Re: New to CH.com not CH
Post by sandie99 on Feb 27^th, 2008, 12:28pm

Warm welcome to your ch family, Brian! :)

Lots of PF wishes,
Sanna

Title: Re: New to CH.com not CH
Post by DennisM1045 on Feb 27^th, 2008, 3:56pm

Hey Brian,

Welcome to your 2nd home! Amazing feeling isn't it 8)

Like the others said, read, read, read. And remember, the only dumb question is one that goes unasked.

-Dennis-

Title: Re: New to CH.com not CH
Post by Superdave on Feb 27^th, 2008, 9:02pm

Welcome Brian,
I am new hear as well. This board has done more for me in 3 weeks, than all the doctors and neuros in 5 years. Its a good place to in a bad time :)

3 weeks, 3 mild attacks
Thanks again You Guys
Superdave

Title: Re: New to CH.com not CH
Post by Cycle_Dad on Feb 27^th, 2008, 9:55pm

Thanks everyone!!!

It really is nice to know you aren't alone.

Speaking of "stupid unasked questions" is there any correlation between exercise and visits from the beast. I've been off my workout routine for about a year as I have a 9 month old daughter who has joined my 4 & 3 year old sons. I'm wondering if the sudden and sustained change in activity might have spurred this on?

I'm about ready to kick things back up. Any chance that will provide any relief?

Thanks again, You are all very helpful.

Brian

Title: Re: New to CH.com not CH
Post by Superdave on Feb 27^th, 2008, 11:15pm

Brian,
Look on page 2 of (meds, therapies and treatments)
for this thread, "Homeopathy/Physical Fitness/Conditioning", I had the same Question a couple of weeks ago. Also the thread" still breathing" from today will give you even more insight

Superdave

Title: Re: New to CH.com not CH
Post by Cycle_Dad on Feb 29^th, 2008, 1:14am

Thanks Superdave. Good info even if it isn't really what I wanted to hear. I think I'll be getting back to my workout routine regardless. At least I know that I'll be feeling better most of the time.

I certainly hope you are able to get your girlfriend to better understand what you're dealing with. If not, we're here for you. Hang tough!!!

Title: Re: New to CH.com not CH
Post by Charlie on Feb 29^th, 2008, 9:14pm

Welcome and read and read and read. You'll find a lot of good ideas. Here is one that worked for me:

Dr. Wright’s Circulatory Technique:

I am not sure what mechanism is triggered by this but whatever it is, at least indirectly helps kill the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. Think of feeling your pulse in your hand. Increased circulation will result in a reddening and warming of the hands. The important and difficult part is that it has to be done without interruption through the pain. Do not give up in frustration. It may not work on the first try. Try experimenting between attacks. You will find that it gets easier with practice. Every now and then it will work almost immediately. I lived for those moments.

I was given less than five minutes instruction in the use of method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I have had about a 75% success rate shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain.

I used to try to imagine I was pushing blood away from my neck into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This may be similar as it draws some circulation away from the head. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. So long as you do not slack off, this has a chance of working.

This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. It gives us a fighting chance.

Charlie