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        New Message Board Archives >> 2003 Posts >> My First Post
        
(Message started by: kjaycox on Apr 17^th, 2003, 3:24pm)

Title: My First Post
Post by kjaycox on Apr 17^th, 2003, 3:24pm

I am thirty years old and have suffered with Episodic CH for since I was 16. I started smoking around that time and for years thought I was just unfortunate in that I was experiencing some sort of nicotine imbalance. I found out this was not the case because quitting did not help. I usually have two bouts per year in the spring and fall lasting anywhere from three to six weeks each. I am in a bout right now that has been going for about seven weeks and has been by far the most painful yet. I have had hundreds of KIP 10's in the last decade but this one has been different. For about two weeks during this bout I was experiencing three 10's per night. It takes a lot of love around you to keep you going when your nights are pure hell. I haven't slept much at all in the last 6 weeks and it is taking its toll as well. I am finally seeing a neurologist and here's what I've tried so far... Ergotamine tablets (worked occasionally if I could catch it in time), Indomethacin (worked for 24 hours, then worse as ever), Prednisone (worked about nine days, bad stuff), Verapamil (didn't seem to work, but not sure dose was high enough 180mg/2 day), Depakote (been on it for 6 days now, still waiting), I am waiting on approval for oxygen from my insurance, I'll wait and see. This cycle should be over soon.... I really feel for anyone who has this condition.. It is impossible to describe our pain. I consider myself a tough person and this can break you real quick. God bless you all and my thoughts will be with you.

PS: Has anyone out there tried applying pressure on your neck with your fingers into the affected side? I have gotten by all these years by doing this. I presume it is reducing blood flow in the carotid. Sometimes I can keep what would have been a KIP 10 at a 2 or 3. But only sometimes..

Title: Re: My First Post
Post by echo on Apr 17^th, 2003, 4:06pm

Sorry to hear that the beast has decided to visit you on a regular basis. Anyway -- welcome to the family. A large verap dose might prove to be helpful.

Never tried the neck squeez to see if it worked.

Title: Re: My First Post
Post by jonny on Apr 17^th, 2003, 4:22pm

Welcome dude,

I have some luck with squeezing some points on my neck while twisting it but nothing like you have achived.

A 10 is a 10 is a 10 for me.

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

Title: Re: My First Post
Post by Bob P on Apr 17^th, 2003, 4:27pm

Dude,

O2 and imitrex injections are the abortives of choice.

Crank the verapamil up by 120mg every couple of days till you get in the 720 / 840 / 960mg a day range. If it don't work then, it ain't gonna (that's if you can handle the side effects (stuff stops me up so bad I'm more full of it than Bagdad Bob).

Title: Re: My First Post
Post by K. on Apr 17^th, 2003, 6:21pm

Welcome.

Sounds like you've been doing your research. I hope you get your O2 SOON! For me, 480mg of Verapamil works. I tried 360mg too but it did nothing. After a week of taking 480mg the K 10's stopped. The rest I can usually abort with O2 or imitrex. I know that everyone is different and I hope you can find what works for you.

PFDAN
Karen

Title: Re: My First Post
Post by eyes_afire on Apr 17^th, 2003, 7:35pm

Welcome aboard.
Does that say 'Opeth' under your name?
Opeth kicks major ass!

Title: Re: My First Post
Post by suzy617 on Apr 17^th, 2003, 7:37pm

Hi Kjay
Sorry for your pain. Imitrex is the choice for me. Gonna get the 02 next time around. I always squeeze my neck but it doesnt seem to help at all. I'm happy it does work for you though.

Hey Bob, nice pic and saying, LOL. ;D

suzy

Title: Re: My First Post
Post by cootie on Apr 17^th, 2003, 7:43pm

Hello to you kjaycox......hopein ya get fixed up with the O2 soon and hope it works for you......hopein with hope Pam

Title: Re: My First Post
Post by Mark C on Apr 17^th, 2003, 7:45pm

The neck thing works for me when I have nothing else to do....hot showers....run outside in the cold nekkid....drink 3 gallons of water in an hour....and my favorite, 6mg of Imitrx subcutanous.....ahhhhh blessed relief!

PFDAN's
Mark

Title: Re: My First Post
Post by catlind on Apr 17^th, 2003, 8:04pm

Welcome aboard Kjay,

You won't find a better place or group of people to help you cope.

Cat

Title: Re: My First Post
Post by Drk^Angel on Apr 17^th, 2003, 9:46pm

Welcome to the board! Sorry that the blowing your cranium into a billion tiny, smoldering, steaming pieces with left over Soviet-era artillery. Welcome to the board! Good luck!

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

Title: Re: My First Post
Post by fubar on Apr 17^th, 2003, 11:04pm

Welcome to the board! I hope you find the support you need here. Don't run away if the family gets loud, it happens, but we all love each other.

Quote:

Welcome to the board! Sorry that the blowing your cranium into a billion tiny, smoldering, steaming pieces with left over Soviet-era artillery. Welcome to the board! Good luck!

Dang, been a while since I've seen one of Drk's famous creative greetings. While it's nice to see, I hope we don't have to see many more. Never really cool to see another suffering cluster head. I wish the beast would stop accepting new members.

-Fu

Title: Re: My First Post
Post by Callico_Kid on Apr 18^th, 2003, 12:07am

Welcome to the family KJay. Glad you found us, but wish you didn't need to . I sometimes can get temporary relief by compressing the carotid as well, but can only do it for short periods of time. Hope the O2 works for you.
jc

Title: Re: My First Post
Post by cathy on Apr 18^th, 2003, 3:48pm

Kjay.....

W E L C O M E !!!

Cathy :)

Title: Re: My First Post
Post by Charlie on Apr 19^th, 2003, 4:11am

Welcome to our world. Sorry you had reason to search us out. Still, you have found a site full of people that have zero trouble understanding this horror. Mine were (in remission for years now) very similar to yours at least in frequency. When mine started, about all there was was Cafergot. For me it was useless. Here is what worked very well for me about 75-80% 0f the time:

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