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        Cluster Headache Help and Support >> Cluster Headache Specific >> 40 years of the #$%&*** BEAST
        
(Message started by: Wayne_B on Feb 16^th, 2007, 8:50pm)

Title: 40 years of the #$%&*** BEAST
Post by Wayne_B on Feb 16^th, 2007, 8:50pm

I have some 40 years of the *%&% beast behind me.
My notes are to express what I have experienced and what sort of works and what nearly killed me.
Since approx. 18 I had my first CH, doc. said I had sinus
problem, drained and took nasal spray etc......nearly died, wanted to, could have...but I don't give up easily.

Doc. finally 2-3 years put me on ergot....took it till my fingers went numb........the beast still laughted. Next
I later took some sort of heart meds. can't remember what it was......during those years my CH have always hit me at 10-10:30pm when I'm in a bout. Bouts come twice a year...Approx. Feb. and or late Aug./Sept. and last for 1-2 months.

Now I take Calan, and the Beast retreats to the background.

Through the years the beast nearly won the battle when I: Ate smoked meats of any kind along with
BBQ.....Took a hot shower............ate fresh corn on the cob.........ate cheese.......salad with vinager.....ate anything after about 6 or 7 pm. (one should eat several small meals all day.).......and for Gods sake no beer, or alco..........several other food groups will begin or prolong a bout. That's enough for now.......could add lots more items.........maybe later.

Title: Re: 40 years of the #$%&*** BEAST
Post by Charlie on Feb 16^th, 2007, 9:09pm

So sorry that this horror has such a grip on you. Nevertheless, you might want to add this to your list of alternatives. It kept me sane.....at least I think so:

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: 40 years of the #$%&*** BEAST
Post by Linda_Howell on Feb 16^th, 2007, 9:25pm

Check your PM's Wayne.

Oh, and Charlie's technique is something to print off and read when you're not getting hit. It is very useful.

Linda

Title: Re: 40 years of the #$%&*** BEAST
Post by Phil L on Feb 17^th, 2007, 12:34am

Thanks Charlie - I'll give it a go.

Title: Re: 40 years of the #$%&*** BEAST
Post by georgej on Feb 17^th, 2007, 12:48am

Hi Phil,

Sorry to see you're still fighting this thing. So am I. Started at 13, am 53 now.

Gets a little old, doesn't it?

I don't know whether your cycles have changed over the years--I used to cycle twice a year (May/June and October/November) , but my last three cycles have been three years apart, and all in the spring.

Wish you hadn't had to come because of the headaches, but welcome. Glad to see another long-time episodic here. Have a look around--I learn something new here everyday.

Best wishes,

George