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        New Message Board Archives >> Jan-Mar 2003 >> new clustehead in need of help!   please!
        
(Message started by: traceyk on Jan 19^th, 2003, 10:44pm)

Title: new clustehead in need of help! please!
Post by traceyk on Jan 19^th, 2003, 10:44pm

hi,
ithink i'm getting cluster headaces- but i'm starting to wish it was a brain bleed,
worst pain of my live, 4 episoded in 48 hours -2 er trips, all lasting 70-90 minutes
of pacing squeezing my head and trying not to through up! what kind of dr do i need to see?
would my faminly dr know? since i refused the lumper puncture 2x at the er, i gotta get a mra this week- just to be sure about the brain bleed.. bt i'm so confused about what to do and where to go for help...any sugestions would be greatly appericated. thanks, tracey

Title: Re: new clustehead in need of help! please!
Post by Mastifflvr28 on Jan 19^th, 2003, 11:13pm

Welcome Tracey,
First word of advice...read EVERYTHING on this site and OUCH's site.
Educate yourself, so you can get yourself the right treatment.
Good luck,
Mast

Title: Re: new clustehead in need of help! please!
Post by Edna on Jan 20^th, 2003, 12:04am

Hey traceyk, listen to Mast, she knows what she's talking about.

Sorry to know you're having such a rough time.......take it from someone who suffered YEARS without any meds or pain relief...........READ, READ, READ, AND READ SOME MORE........lots of useful info here and at OUCH that will be of utmost use to you.......thanks to the very hard work of many ppl here.

To answer your question, family doc is who I've seen with success........BUT, if you take time to read here you shall soon see that what works for one will not always work for another......so do a little homework here and best of luck to you.

Keep us posted on your progress,
EDNA

Title: Re: new clustehead in need of help! please!
Post by Charlie on Jan 20^th, 2003, 1:43am

Welcome and you are not alone. Neurologists are what you need to see. Tons of tests and maybe they can help. Here is a technique that has helped some of us:

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: new clustehead in need of help! please!
Post by rick on Jan 20^th, 2003, 2:45am

Hi Tracey,

Definitely seek a neurologist, preferably a headache specialist. And educate yourself as much as possible.

It's unfortunate, but our condition is rare, and many physicians have never even treated a real clusterhead. As a result, few take the time to really educate themselves on this condition, so it's important that you yourself become as aware as possible about the problem. This in turn may help you avoid some ineffective treatment options that others here been through.

Sorry you have to be here, but welcome to the family ;D.

-R

Title: Re: new clustehead in need of help! please!
Post by Silver_Dolphins on Jan 20^th, 2003, 8:04am

Hi traceyk,

Welcome to our hell. I am sorry you are among us but am glad you found us. Like everyone has said so far familiarize yourself with this site. Ask questions on the Message Boards and read the meds / treatments / therapires/ pages. When you have time, go to the archives section. There is a lot of good informaton there.

You will sooon learn about the effect of oxygen as a wonderful abortive for MOST (but not all) people. Until you get to see a neurologist, go by your local fire department and tell them about cluster headaches and that you are a sufferer. Ask them if it would be alright when your next attack ( I don't call them headaches) occurs (and it more than likely will), if they would hook you up to a NON rebreathing mask at a flow rate of 15 litres per minute. It may not totally wipe away the entire attack, but it probably will make it bearable.

READ READ READ this site. Go to the OUCH site and join this organization. It's free and is our charity arm. Donations are always accepted if you are able.

I hope you are not one of us, but if you are, you could not have found a better place to be to find help.

PFDAN

Barry a/k/a Silver Dolphins

Title: Re: new clustehead in need of help! please!
Post by Brassbear on Jan 20^th, 2003, 11:40am

Tracey,

Sorry to have to welcome you to the family. If you already have the MRI scheduled, follow through with it. Better safe than sorry.

Listen to the people here, they'll steer you in the right direction. I would have been lost without them when this first started for me.

Hope you get some PFDANs soon.

Michael

Title: Re: new clustehead in need of help! please!
Post by echo on Jan 20^th, 2003, 1:16pm

Good idea to get the MRI to eliminate other possibilities. Sorry you needed to search us out. Loads of information available within the links to the left.

Welcome aboard

Title: Re: new clustehead in need of help! please!
Post by suzy617 on Jan 20^th, 2003, 2:04pm

The others have said it all, so I will just say....

WELCOME....

suzy

Title: Re: new clustehead in need of help! please!
Post by Mark C on Jan 20^th, 2003, 2:16pm

on 01/20/03 at 02:45:28, rick wrote:

Could not have said it better myself....great post Rick.
Welcome Tracey, you already have most of the advice so I will attach a favorite link to aid in your battle, good luck,
Mark
http://www.clusterheadaches.org/library/general/index.htm

Title: Re: new clustehead in need of help! please!
Post by WifeOfBruceD on Jan 27^th, 2003, 4:56pm

Welcome Tracey,

Ditto to the above helps. I have seen my husband suffer in such unexplainable ways from CH. It has been many years and just this month he started using oxygen as an abortive. It was delivered to our home about 48 hours after Bruce found this site. He has had EXTREMLY wonderful results!! All from the encouragement of the great people you will meet here.

Best to you as you learn your options. If you haven't....................GET THE OXYGEN WITH A 100% NONREBREATHER MASK!!!!

WifeOfBruceD

Title: Re: new clustehead in need of help! please!
Post by cootie on Jan 27^th, 2003, 5:07pm

Hi traceyk.....jus wanted ta say hello and sorry bout yer pain goin on.........Pam

Title: Re: new clustehead in need of help! please!
Post by jonny on Jan 27^th, 2003, 5:08pm

on 01/27/03 at 16:56:59, WifeOfBruceD wrote:

Best to you as you learn your options. If you haven't....................GET THE OXYGEN WITH A 100% NONREBREATHER MASK!!!!
WifeOfBruceD

Way to go Wife of Bruce D, Get 02 and learn, all in one sentence.

Thats what we need more of here, direction.

Great advice, its good to see you posting.

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