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        New Message Board Archives >> 2003 Posts >> Newbie
        
(Message started by: kekahbah on Apr 8^th, 2003, 4:10pm)

Title: Newbie
Post by kekahbah on Apr 8^th, 2003, 4:10pm

I happened upon this site last night after battling with CH, I had no idea there was such a large group out here. I have been suffering with CH for the past 11 years, they started when I was 19 and in college. This current cycle has been a particularly tough one for me, but I am lucky to have a doctor who seems to understand the severity of the pain. I am just starting Oxygen today to go along with Verapamil as preventive and Maxalt-MLT for abortive. I look forward to chatting and getting to know my fellow clusterheads.

Title: Re: Newbie
Post by jonny on Apr 8^th, 2003, 4:11pm

Welcome Keka,

Pull up a seat and read your ass off.

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

Title: Re: Newbie
Post by cathy on Apr 8^th, 2003, 4:14pm

Kekahbah

WELCOME!!!

Cathy :)

Title: Re: Newbie
Post by firebrix on Apr 8^th, 2003, 4:34pm

Welcome kekahbah!
Good to meet you but sorry you need this site.
Good luck with the O2 - it helps many people
Wishing you PFDAN
firebrix

Title: Re: Newbie
Post by 2late on Apr 8^th, 2003, 6:23pm

welcome "home" good luck with the 02, for me it rocks! make sure you use it right, read up & ask questions. good luck. ..........Jack

Title: Re: Newbie
Post by catlind on Apr 8^th, 2003, 6:30pm

Welcome Aboard Keka,

The family always has room for one more at the dinner table here in clusterville. Unfortunate we have to exist, but as a large group we are making great strides to inform the medical community. You will find here a group of people who will help you through even your worst battle, and they will show you support in a way no other can, because we know the pain you know.

Grab an oar and start rowin! :)

Cat

Title: Re: Newbie
Post by jimbo on Apr 8^th, 2003, 7:40pm

Welcome aboard!

Stick around, most of us don't bite! LOL

Seeya,

Jimbo

Title: Re: Newbie
Post by don on Apr 8^th, 2003, 8:25pm

Welcome aboard.

You found us like most do, desperately typing CH in to the search engine.

See the big yellow OUCH link to the left. Push it and join the Organiization for Understanding Cluster Headaches.
Membership is free.

Welcome home bud!

Title: Re: Newbie
Post by Drk^Angel on Apr 8^th, 2003, 9:57pm

Welcome to the board! Sorry that the beast is blasting your cranium into a million little bloody, smoldering pieces with his version of a bunker buster bomb. Welcome to the family! Good luck!

PFDAN................................. Drk^Angel

Title: Re: Newbie
Post by Callico_Kid on Apr 8^th, 2003, 10:04pm

Glad you found us!

You will find no more caring or knowledgeable people anywhere.

jc

Title: Re: Newbie
Post by cootie on Apr 8^th, 2003, 10:09pm

Welcome kekahbah.....a good time is had by all on here Pam

Title: Re: Newbie
Post by Charlie on Apr 8^th, 2003, 10:58pm

Welcome to our ward kekahbah. Stick around and do some reading. If you do, I promise you'll find something here to help in some way...if only to cope better. There are several things here too that can help with pain. Here's mine:

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: Newbie
Post by fubar on Apr 8^th, 2003, 11:43pm

kekahbah,

I hope you find this family to be as entertaining as you find it informative, supportive and resourceful.

I'm no expert on the oxygen, but here's my experience so far.

I too found new relief with the oxygen, but not until I was using it correctly. A non-rebreather mask is very important, yet most oxygen supply places don't even know what they are. They are the masks with a bag under them. You'll find you need an oxygen flow greater than what is commonly available too. I find I need somewhere over 8lpm and less than 15 lpm, but most oxygen regulators don't go past 7 lpm. I guess this is because it's not normal to deliver full lung capacity flow of oxygen for treatment. Alas, we are not normal.

Also, those oxygen 'concentrators' that they try to sell you or convince you are 'cool' really suck because their efficiency at their pathetic maximum output (again, 7-8 lpm) is less than 100% oxygen. (I think it's near 90%)

Anyway, you have to find:

- non-rebreather oxygen mask
- high-flow regulator

For the mask, there are links here where you can buy online (less than $2). Or, gimmie your address and I'll send my 1 extra to you.

For the high flow regulator, hopefully your oxygen supply place will know what one is. They seem to be totally clueless where I am.

-Fu

Title: Re: Newbie
Post by Not4Hire on Apr 9^th, 2003, 12:09am

kekahbah: there's *some* info in this thread...

http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=general;action=display;num=1049499967

or just try this:

http://home.earthlink.net/~carpediem56/

Good luck!....Steve(N4H)

Title: Re: Newbie
Post by Mikey on Apr 9^th, 2003, 3:12am

Welcome aboard Kekahbah,

Ask all the questions you want to, but it's even better to
read, read, and read some more first.

We have fun and get very serious when we need to.

Mikey, ;D

PS Jimbo, Jonny might! LMAO!