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        New Message Board Archives >> Jan-Mar 2003 >> No room to complain, but....
        
(Message started by: thsa on Feb 17^th, 2003, 11:26am)

Title: No room to complain, but....
Post by thsa on Feb 17^th, 2003, 11:26am

Hey all,

I posted here a LONG time ago, but now am back. Am entering my 5th week of clusters after a 4 YEAR hiatus (hence the subject of no room to complain). Yes it's true, after 4 years of altering what I thought might be causing my headaches, they came back as if all I had done meant nothing.

For those who don't remember me or know me, I am simon, the army physician that has been suffering from clusters for the last 16 years.

The army has moved me around so much that it took me awhile to find my password to post. Have been reading posts off and on for several years with not too much to add.

Am on Frova now which seems to help a lot, though still having breakthrough headaches, so it hasnt been a cure all for me. Drinking water like there's no end to the supply, and would stand on my head and stack greasy BBs between my teeth if I thought it would help.

I went to see the local neurologist to get a refill of Frova and had an early morning attack (9am) and ended up banging my head against a desk for a while. Have a nice bruise on my forehead. They were worried that I was upseting the other patients......ummm, sorry :(

Anyway, things are now back to....normal, sadly to say.

You all hang in there as we are all in this damn thing together,
simon

Title: Re: No room to complain, but....
Post by cootie on Feb 17^th, 2003, 1:50pm

Hi thsa.....I remember bein told that 'exact same thing' about upseting the other patients when I was havein my kid.......wasn't to comforting ! Good luck to ya...Pam

Title: Re: No room to complain, but....
Post by jonny on Feb 17^th, 2003, 5:07pm

You posted here a long time ago?

Where did you go and why?, I could have used your support, Doc.

..............................jonny

Title: Re: No room to complain, but....
Post by thsa on Feb 17^th, 2003, 6:31pm

jonny,

Army had other plans for me...not in an area that had open internet access. Posting from a military computer is rather frowned upon.

Have seen some posts about some Doctors that were less than complimentary. Although I understand the frustration, there is another side of the story. Trust me, even my own doctor at my last duty station had never actually 'seen' a cluster headache. What you read in a book about pain is never clear about how people deal with that same pain. Even I was unaware of what 'debilitating headaches' were until I had them.

Of course lately, with some of the post about what has been going on in the Middle East has not made me want to post much. Some of the posts have depressed me as much as the headaches.

But I'm around...

simon

Title: Re: No room to complain, but....
Post by jonny on Feb 17^th, 2003, 6:35pm

Take what you need and leave the rest, Doc.

Its not hard to do.

Glad your around though.

...............................jonny

Title: Re: No room to complain, but....
Post by Roxy on Feb 17^th, 2003, 6:45pm

Simon...

Welcome back. Glad you're here, but I'm sorry the pain is back after such a long time. Stick around....keep us chronics company ;).

Sorry some of the posts upset you. This board is like a large family, in that you may not like everything your family says....but, you love them anyway :-*. Everyone has different opinions.....to me, it's what makes life interesting!! Please don't leave because you disagree with some. We could use your help and support.

Hoping you are PF,

Tracey ;D

Title: Re: No room to complain, but....
Post by kim on Feb 17^th, 2003, 6:53pm

Hello Simon, glad to hear from you :)

Just wanted to wish you continued (and BETTER) success with Frova. Best wishes and keep us posted!

PFDAN

Title: Re: No room to complain, but....
Post by Charlie on Feb 18^th, 2003, 12:33am

WB Simon and sorry you're getting hit.

I'm the guy who posts the circulatory technique. Give it a spin. Dr. Wright was a neurologist who didn't go for silly stuff. This thing worked well:

Dr. Wright's Circulatory Technique

This is not transcendental meditation, imagery, relaxation, or anything psychic. It's entirely physical and takes a lot of work and concentration. Give this method a good workout. It’s not a miracle, but it’s been helpful to many.

When I was diagnosed, my neurologist said to treat this as a vascular problem. I was told to concentrate on “redirecting” blood circulation in order to retard flow to the head. This is done by trying to “send” blood into the arms and hands or other extremities. When properly done, your hands will become warm and redder with increased circulation. I also found it easier to concentrate on one hand.

This relieves just slightly, the pressure on the affected vessel, which indirectly causes our pain. We all have this ability but it can be exhausting. I was often able shorten my attacks from about half an hour to no more than a few minutes. Sometimes, when awake, I could entirely abort the attack IF I KEPT AT IT. Often, I would suffer only minor discomfort instead of excruciating pain. Do not stop just because your hands are warm or redder. Keep this up until you are sure it's subsided. If you let up or lose concentration, it’s very hard to restart this process. It may take some time but when this works, the relief is almost immediate.

I learned this from the doctor in a few minutes. He simply told me to try to keep blood away from the head. He thought it easiest to concentrate on the arms and hands but any place that works for you is fine. He said to think of it as "filling your hands" with redirected blood. It’s important to keep at it THROUGH the pain. This will be difficult, but it’s the only way this technique will work. Don’t let up until you are sure the attack has ended.

This will not always work, but I think it will always have at least some effect on the severity and duration of the attacks. It can be useful between medications or while waiting for some other drug to take effect. All it takes is a little practice. It was fairly easy to learn and what I'm writing here is more than I got from the doctor, as I've drawn from my own experience.

When awakened in horrible pain, it’s very hard to focus, but I think it’s always worth a try. This costs nothing but hard work, is harmless, non-invasive, and it gives us a fighting chance.

I wish you the best of luck - Charlie Strand

Title: Re: No room to complain, but....
Post by firebrix on Feb 18^th, 2003, 2:46pm

Pleased to meet you thsa!
Welcome!
Sorry to hear that you're getting hammered again. Must be awful after a four year break.
Hope you find something to scare them away again. Let us know when you do.
Good Luck and PFDAN to you
firebrix