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        New Message Board Archives >> 2005 General Board Posts >> just found out
        
(Message started by: Wim on Sep 25^th, 2005, 3:17pm)

Title: just found out
Post by Wim on Sep 25^th, 2005, 3:17pm

Hi

I just found out that I have clusterheadache. It is a bit of a relief now that I finally know what is going on. I was thinking about a brain tumor or something like that.
It had to be something awfull to cause such a pain.

I have read some of the topics on your board. OH MY GOD! And I thought my headaches were bad.

greetings

Wim

Title: Re: just found out
Post by LeLimey on Sep 25^th, 2005, 3:29pm

Hello Wim,
nice to meet you even if it is here :-/
How long have you had CH now (before diagnosis) and what meds have they put you on?
Lets see if there is anything we can suggest to help you out!
We have another terrific guy from Belgium here, Ronny who is in Brugge so you are not alone, you have all of us and also someone fairly near to you too!
Read as much as you can and ask all the questions you want.
You're home now!
Regards
Helen

Title: Re: just found out
Post by Ronny on Sep 25^th, 2005, 4:23pm

Hey Wim,

Welkom hier, ik zie dat je van Leuven bent.
Je kunt hier veel leren betreffende CH, dat zul je de komende weken wel zien.

Blij dat er nog een Belg is.

Ronny.

Title: Re: just found out
Post by Ronny on Sep 25^th, 2005, 4:24pm

on 09/25/05 at 15:29:55, LeLimey wrote:

We have another terrific guy from Belgium here, Ronny

Yup he is ;;D

Title: Re: just found out
Post by Charlie on Sep 25^th, 2005, 5:24pm

Welcome aboard but sorry you have to deal with this horror.

You will find lots of support and ideas about handling the beast. 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. It can described as a conscious circulatory flexing. Increased circulation will result in a reddening and warming of the hands. Try to think of it as filling your hands with redirected blood. 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. Every now and then it will work almost immediately. I lived for those moments. Try experimenting between attacks. You will find that it gets easier with practice.

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.

Perhaps it will help if you think of it as trying to fill the arm as if it is were an empty vessel. I used to try to imagine I was pushing blood away from my head 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

Title: Re: just found out
Post by Carl_D on Sep 25^th, 2005, 6:32pm

Welcome Wim. Sorry you have to be here but glad you found us.

Peace,
Carl D

Title: Re: just found out
Post by sandie99 on Sep 26^th, 2005, 3:20am

Wim,

warm welcome! :)

I'm so sorry that you have ch. But I'm so glad that you found us.

Wishing you PF days,
Sanna :)