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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> Hello All
        
(Message started by: Jimmyl on Feb 18^th, 2007, 10:31pm)

Title: Hello All
Post by Jimmyl on Feb 18^th, 2007, 10:31pm

I have been here before, but many years ago. I am male 54 yrs old, episodic and have had clusters since my teens. I use Verapamil and Oxygen and both work very well for me. My cycles are usually two years apart and last 6 - 8 wks. As best I can remember my clusters never went away for more than a month or so when I was young. When I was in my late twenties they started to become episodic totally and the time between episodes got further apart.

The verapamil and 02 are miracle workers for me, and I hope this information can help someone else.

JimmyL

Title: Re: Hello All
Post by georgej on Feb 19^th, 2007, 1:41am

Welcome Jimmy,

It's a pleasure to hear from you. I'm a long-time episodic as well--never chronic, however--who's also had CH since my teens. I'm 53 now.

My cycles began to get farther apart in my mid-thirties, and have been approximately three years between for the past few cycles. Glad to hear that yours appear to be following the same pattern.

While we never get used to them, it's a small comfort that they at least seem to leave us alone a bit more. Here's hoping that one day we will at last "outgrow" them.

Happy that Verapamil and 02 have been helpful for you. I know that there are many here who have been given their lives back with these therapies.

Again, welcome--and I look forward to hearing more from you on the board.

Best wishes,

George

Title: Re: Hello All
Post by duckie on Feb 19^th, 2007, 4:37am

Hi JimmyL, I'm episodic too and have been diagnosed since I was 22 (28 now). I look back on my youth and remember a few times when I could of been in cycles when I was growing up. Just wanted to say hello!!

PF vibes, Lii

Title: Re: Hello All
Post by Charlie on Feb 19^th, 2007, 6:50pm

Welcome back to the madhouse.

I'm 60 now and have been pain free for 16 years. It beats me why but I'm into believing that there is an age factor. I was episodic for 23 years. While this isn't the reason I've been so lucky, it made things a bit easier:

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