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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> THANK YOU !
        
(Message started by: mmbowling55 on Dec 9^th, 2007, 11:40pm)

Title: THANK YOU !
Post by mmbowling55 on Dec 9^th, 2007, 11:40pm

I am a wife to a wonderful man who suffers with CH ! It all started about 7 years ago when he started getting them and he was placed in the ICU at our local hospital . Test after test was ran on him ( the usually from what I see on here ) scans , mri etc. and they thought he has some kind of tumor or such on his brain then they just dropped it as quick as it was brought up and he was released . He went pain-free this whole time until now ! After visiting the same Dr that he seen at the time in hospital he finally said it was CH . So of course not knowing anything about it we started researching on the internet and found BAM they finally nailed it (not like that is a good thing) . We also came across this wonderful site and I just wanted to thank each and everyone of you on here because this has been so helpful to us ! THANK YOU !

Title: Re: THANK YOU !
Post by George_J on Dec 9^th, 2007, 11:48pm

Welcome to your new home on the internet. :)

Tell us a little about the things he's been given to treat them, if you will--perhaps some of us may be able to suggest something he hasn't tried that will make his life a bit easier.

We consider our supporters (like you) to be more valuable than gold.

Again, welcome--and get your husband to introduce himself as well, okay?

Best wishes,

George

Title: Re: THANK YOU !
Post by mmbowling55 on Dec 9^th, 2007, 11:57pm

Well since he just was told that he has CH , he has't yet went through to many meds ! So far he has been placed on pain meds of course that really dont do anything for him but make him feel funny, imitrex ( in pill form ) and then oxygen . I am trying to find a good neurologist in our area that may be able to help him a little more then a family doctor .

Title: Re: THANK YOU !
Post by Bob_Johnson on Dec 10^th, 2007, 7:26am

1. Search the OUCH site (button on left) for a list of recommended M.D.s.

2. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

3. Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

4. http://www.achenet.org On-line screen to find a physician.

5. http://www.headaches.org/consumer/index.html Call 1-800-643-5552; they will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.

Title: Re: THANK YOU !
Post by E-Double on Dec 10^th, 2007, 8:39am

Hello and sorry your hubby is in pain.

If CH this is the best place around for support and information.
If BAM (now known as BTM) then you especially need a knowledgeable doctor for many of the meds that we utilize as abortives should NOT be used!!!

BAM can lead to stroke, coma or death where CH may just make you pray for it during an episode but is not that sinister.

Abortives for BAM are typically vasodilation where for CH it is vasonconstriction.

good luck!

E

Title: Re: THANK YOU !
Post by DennisM1045 on Dec 10^th, 2007, 9:00am

I'm sorry your husband has CH but I'm happy you found us. Get him to sign in and start reading. The knowledge here is 2nd to none. Then find a doctor he can work with. These things hurt like hell, but they won't kill him. With the right combination of treatments he can live a normal life too.

Welcome to the nut house ... and your new home on the internet.

-Dennis-

Title: Re: THANK YOU !
Post by Guiseppi on Dec 10^th, 2007, 2:24pm

Welcome and thank you for being a supporter. My wifey of 25 years is the only reason I'm still sane.

The fact that your doctor prescribed 02 is awesome! Shows he knows a bit about CH. PLEASE READ THE OXYGEN LINK ON THE LEFT!!!

Used correctly oxygen has been a miracle treatment for many, used incorrectly it's worthless. Worth the time to study the link!

Thank you again for being a supporter, your hubby is a lucky man! ;;D

Guiseppi

Title: Re: THANK YOU !
Post by Charlie on Dec 10^th, 2007, 9:38pm

Welcome to the fold but sorry it has to be because of this horror. Aside from the medications, here is something that I and some others here have used. It costs nothing and is harmless to everything but this nightmare.

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