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        New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> are we there yet?
        
(Message started by: RP on Feb 21^st, 2004, 11:17am)

Title: are we there yet?
Post by RP on Feb 21^st, 2004, 11:17am

Another trip to another doctor, another diagnosis and another batch of pills. This doc say's its cluster headaches, so here I am.

I've been diagnosed with everything from sinusitis(even had surgery for that one) to TMJ to trigeminal neuralgia. Even had one ENT doc say "I'm sorry i dont know what the hell's wrong with you."

I came to this website and there it is, my pain described exactly! The beast and shadows, never heard that term before but that's it . And the Kip scale and on and on, the more i dig around in here the more similarity's i see.

An attack usually goes like this... shadows K2 or k3 always in the same place always exactly the same, it's the beast whispering in my ear, "psst. remember me hehehe. " and i wonder is he gonna come out this time, or just fk'n with me again. This will go on for hours before shadows step up a bit k4 or k5, ok he's comin', no matter where im at or what im doing its time to get home. Bang he's out k8 k9 i see you all call it dancing, although for me its more like wrestling he's the cat and im the toy being slapped around and the knockout punch a nice solid k10 and just when im wondering if this one will ever end ... poof he's gone.

I do however have some differences from what i've seen here.
* My pain is around my right ear, not on my face near my eye or temple always the same place all around my ear.
*I have never been woken up with a full blown attack, wake up with shadows but thats it.
*No set scedule of attacks.
*Attacks are not worse at night, equally bad day or night
*No known trigger whatsoever

After 10 years of this quest to determine whats wrong with me its hard to just accept a diagnosis. My main concern here is the location of my pain. I would love to finally KNOW what is wrong. Even if its not CH i have, i can now better describe my attacks thanks to this website.

Title: Re: are we there yet?
Post by J.ten_Dam on Feb 22^nd, 2004, 5:58am

;)Hi
It might help you if you did the headache test to eliminate cluster headache. You mentiond in your mail that you have no sagging or swolen eye this is common for almost every Clusterhead.
Wish you strength

Title: Re: are we there yet?
Post by RP on Feb 22^nd, 2004, 9:35am

I plan on going to a headache specialist for a second opinion... or is it 1,94875th opinion.. second on it being CH tho. While i may not be there yet, at least i feel this is a lot closer than the previous trigeminal neuralgia diagnosis.

Title: Re: are we there yet?
Post by Bob_Johnson on Feb 22^nd, 2004, 11:06am

The descriptions of cluster which you read are sort of an "ideal" model but, like any model, subject to individual variation.

Especially during the early years after developing cluster, movement of the pain is not unusual. Base of the nect, temples, eyes, jaws--all experiences which have been reported here. It's more important to get an accurate diagnosis by working with a doc who has some sophistication & experience working with all types of headache. Explore material here and on OUCH for ideas in locating a good doc.

It's helpful for you and your doc if you will keep a log recording each attack: time, location of pain, duration, etc. Over time, our memory starts to blurr on these variables yet they are important clues in making a good diagnosis.

Title: Re: are we there yet?
Post by Charlie on Feb 23^rd, 2004, 2:26pm

It's seems you've found a home and you are more than welcome. I know of no other "headache" that wakes you out of a cold sleep. Your description hits it on the head for me.

If you stick around you will find some good ideas and ways to deal with this horror. You might want to print out some information here to show your next doctor.

Take a look here too:

Here are a couple links that may be helpful. The first being a technique that worked for me:

http://www.netsync.net/~charlies/

This next one is a letter written by a fellow cluster headache sufferer that is the best of its kind to help explain these attacks to families, friends and employers. Its author encourages copying. It’s well worth it.

"http://www.ouch-uk.org/ch/note_colleagues.cfm"

Good luck and let us know how you're getting along.

Charlie