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        New Message Board Archives >> Jul-Sep 2003 >> Introduction.
        
(Message started by: Dpactech on Jul 14^th, 2003, 6:22pm)

Title: Introduction.
Post by Dpactech on Jul 14^th, 2003, 6:22pm

Hello all.

I have been replying to and posting messages and all without first introducing myself so to keep things out of the proper order:

I have had CH for 8 years now. I have had tons of tests all telling me what the pain was not caused by.

It was only about 3 years ago that my family doctor sent me to a nurologist who said it "sounds like a cluster headache" , not actually saying that it was a cluster headache.

The attacks come once a year and last for 30 days with one attack every day that lasts 2 hours.

I also have a heart condition cardiomyopthy which I take beta blockers for.

My family doctor suggested verapamil but my cardilolgest said I had to stop taking my heart medication when taking verapamil.

The verapamil works for me (360mg once a day). I am pain free as long as I take it at the same time every day. After 30 days I switch back to my heart medication and hope the attacks don't come back next year (I know very wishful thinking)

I am here to try an learn as much as I can about CH and to help others by sharing information.

You all seem very nice and very helpfull. Heres hoping we can figure this beast out so we can succesfully eliminate it.

Title: Re: Introduction.
Post by oringkid on Jul 14^th, 2003, 6:33pm

Welcome.
30 years here... what used to be twice a year episodes now coming once every 2 years... 3 to 5 months of between 1 and up to 8 attacks per day at between 30min. to 2 hours each.

Sherry

Title: Re: Introduction.
Post by jonny on Jul 14^th, 2003, 6:39pm

28 years chronic.

Next time you have advice on meds put a ball cock in your mouth and STFU

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

Title: Re: Introduction.
Post by Karla on Jul 14^th, 2003, 6:41pm

Glad to hear you are finding relief with verapamil. Nice to meet you and welcome to the family. I am chronic and nothing works for me.

Title: Re: Introduction.
Post by cootie on Jul 14^th, 2003, 6:47pm

Howdy hi Dpactech....welcome and I hope yer attacks don't come back either....PF wishes to you....you can learn alot of info here. Pam that has learned alot the past year

Title: Re: Introduction.
Post by Charlie on Jul 14^th, 2003, 7:30pm

Welcome aboard. 22 years here but have been gone since 1991 and not at all missed. I'm nearly 57 and an epileptic. At the time my epilepsy meds had the same for many years so I can't make that connection. I may be one of those who benefits from being a geezer. There is some weak evidence for age as a factor.

Anyway, sorry about your heart meds getting in your way. Here is something that I used all the time in place of medication and it worked very well for me:

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: Introduction.
Post by suzy617 on Jul 14^th, 2003, 7:38pm

Hello and welcome. Stick around, you can learn alot here.
Wishing you pf times,

Suzy

Title: Re: Introduction.
Post by juvy on Jul 15^th, 2003, 1:54am

hey D....,

I'm the resident CPH nut. Welcome to the family..even if it is a shame you have to be here. Most of us are really nice when not provoked. Stay away from Jonny...he tends to bite when looked at.

Cheers,
~Juvy

Title: Re: Introduction.
Post by stuey on Jul 15^th, 2003, 2:37pm

Welcome. Sorry U R here but welcome. I'm Stuey in my second cycle and hating it. Don't know if I'm episodic or chronic yet. Glad 360 verapamil works for you. I take that for blood pressure but it doesn't relieve CH. The neuro I went to last night wants me to go quickly up to 960 so I guess I'll see if that works. Whatever. Whatever. Whatever. Welcome. Stuey

Title: Re: Introduction.
Post by ZAIRA on Jul 15^th, 2003, 2:55pm

Verapamil is for me very helpful, but during this cluster I have had heart problems due to the high dosage of Verapamil and reducing it the problems are totally away... it was the first time that it happens me after 8 years that I’ve been using it... Anyway just wanted to tell you WELCOME!! ;D

Stay with us!!

Zaira ;D

Title: Re: Introduction.
Post by jonny on Jul 15^th, 2003, 3:00pm

on 07/15/03 at 01:54:28, juvy wrote:

Stay away from Jonny...he tends to bite when looked at.

I dont bite I just growl alot ;D

"STFU" is a term of endearment :D

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

Title: Re: Introduction.
Post by miCHel on Jul 15^th, 2003, 3:04pm

Hi D:

Welcome. 18 years episodic for me. Took me 15 years to learn anything about CH and get some sort of proper relief (or simply hope of it). Everything I know about CH, I learned here.

Stick around, you will get great answers and terrific support when you need it!

miCHel

Title: Re: Introduction.
Post by totka on Jul 15^th, 2003, 3:35pm

Welcome and greetings from the other side of the Earth.
My CH will be 21 years old in August.

Steve

Title: Re: Introduction.
Post by cathy on Jul 15^th, 2003, 3:55pm

Hi and Welcome Depac....sorry your a sufferer, but happy to hear you got meds that are working for you.

Jonny STFU!!! :)

Cathy

Title: Re: Introduction.
Post by Dpactech on Jul 17^th, 2003, 10:33pm

Thank you all for the warm welcome.

After reading many of your posts about how CH affects you I consider myself very fortunate as far as a CH sufferer goes.

I wish you all long and extended pain free times.

I look forward to learning more about CH

Dpactech