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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> Finally something that makes sense
        
(Message started by: Dan5328 on May 28^th, 2007, 2:59pm)

Title: Finally something that makes sense
Post by Dan5328 on May 28^th, 2007, 2:59pm

I never heard of a cluster headache until about a week ago, but I'm convinced I have been suffering from them for the last four years. All the symptoms are right on target (pain free periods, waking up an hour after going to sleep, stuffed up on one side, etc.) Most of the stuff I have read in the last week makes more sense than anything doctors have ever told me.
At first I thought they were sinus headaches because my nose would get stuffed up on the side (always my right side) I get my headaches. I lived on sinus headache pain relievers trying to beat the headaches before they came (usually can tell about ten minutes before hand). Of course that never worked even though I may have thought it did with the headaches going away about a half hour later. The last time I went to see a doctor for them, I was told I had to stop taking sinus medicine because it was raising my blood pressure. He put me on antibiotics for a sinus infection and sent me to the hospital for a ct scan. The doctor there told me there was no infection or any else wrong and that I was probably getting migraines. Lived with some over the counter migraine medicine by my side after that until I had a couple of pain free months. Then a couple of weeks ago they came back.
I think my wife was getting sick of the way I act when I'm having a headache (waking up at night, pacing, being very evil to people just trying to help, etc.). She starting researching and found this website and others last week. She too is totally convinced I suffer with cluster headaches.
I have not been diagnosed yet so here is my question. Do I need to go see a neurologist, or is there another type of specialist that would be knowledgeable on the subject? I'm starting from scratch without any real knowledge on the subject except what I been through.

Title: Re: Finally something that makes sense
Post by Guiseppi on May 28^th, 2007, 3:28pm

It is really important to get a solid diagnosis before embarking on a treatment program. A neuro with some education on CH is awesome but hard to come by. Once you get a confirmed diagnosis you need to do a couple of things. You can't cure these things and nothing makes them go away forever, but they are manageable. Sounds like you're episodic like me, you have several months of pain free then wam they're back.

You need a good preventative. That's a medication you take when your cycle turns on again. I use lithium, others use verapamil, (might be a good first option for you it's a high blood pressure med!) CH'ers take it at higher levels then most doctors are used to, depakote, there are many to read up on. Many people go on a short term prednisone taper when their cycle starts up again. The prednisone will work as a complete block for most, but it's side effects can be severe so it's not a good long term med. I take it for the first two weeks of a cycle while I wait for my lithium levels to get set.

Then you need an abortive strategy. My first line abortive is oxygen. You will see many many many people preach it as a first line abort cuz it's cheap, damned effective and no side effects. It must be used with a non re breather mask at a high flow rate so you breathe only pure oxygen. For most it will abort a headache in less then 10 minutes. I use imitrex injectables when all else fails but I don't like them!!!

For now try slamming an energy drink, like red bull, one containing caffeine and taurine. Many can abort a headache just by slamming one of those down. Ice packs on the neck and affected side of the head help too.

You have much reading to do, welcome to the nuthouse, if you do have CH you have found a new home. Ask your wife to register and hang out on the supporter board. They all bitch about what weenies we are when we're in cycle, she'll find many sympathetic ears there to share her stories with. Then thank her for being a supporter. My wife found this board for me and saved my sanity!!!

Guiseppi

Title: Re: Finally something that makes sense
Post by Ray on May 28^th, 2007, 4:36pm

Hello and welcome:

I agree with what Guiseppi said, very well by the way!
There are other doctors who can diagnose cluster headaches, however they are very rare. There may be a headache treatment specialist in your area, the OUCH website has some referrals in many areas.

Best of luck to you, and please keep us in mind.

Wishing you PF days and nights.

Ray

Title: Re: Finally something that makes sense
Post by ClusterChuck on May 28^th, 2007, 11:01pm

on 05/28/07 at 15:28:09, Guiseppi wrote:

My wife found this board for me and saved my sanity!!!

BWAHAHAHAHAHA !!!

Like Guiseppi ever WAS sane!!!

Welcome aboard, Dan!

As has been stated, get a proper diagnosis, and CAT, MRI, and maybe MRA tests in order to rule out other possibilities.

Next, get ready and armed to fight the beast!. The first three most important tools are:
attitude, ATTITUDE and ATTITUDE !!!

Once you have that one down, you can fight properly. Get your preventative, and abortives in line. I, like many, swear by oxygen, 100%, at up to 15 LPM (litre per minute) and a non-rebreathing mask (NOT a nose canula!).

Remember, NEVER let the beast win! YOU are stronger and more stubborn than he is!

Don't dwell on the hits. Dwell on the pain free time, between hits! Between hits, life is GRAND!!!

Good luck, and keep us informed!

Chuck