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        New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> not sure its really a cluster
        
(Message started by: jenk on Apr 29^th, 2005, 10:51am)

Title: not sure its really a cluster
Post by jenk on Apr 29^th, 2005, 10:51am

ok, so the docs say these things are cluster headaches, but i can not find a single discription on the net that matches what i have! so... does anyone else suffer from quick, frightening, intensly painful bursts of pain? Sometimes, there is a dull ache in the back ground but nothing I can't live with. I can have up to 3 in a minute and 20 in an hr. They make me jump and cringe, sometimes I have to yell out. I have almost driven off the road (from taking my hands of the wheel and grabbing my head). After the 4th or 5th day, my left side of my face gets funny and my vision and reflexes slow. I also seem to loose some ability to choose words. This improves when they stop, but that could be weeks. Also after a few days, I run the risk of blacking out for a few seconds (again, makes driving difficult!). And the biggest difference from what I've read is that alcohol seems to slow them down. Does this sound familiar to anyone?

Title: Re: not sure its really a cluster
Post by pattik on Apr 29^th, 2005, 10:57am

You are not describing cluster at all, that I can see. In fact, it sounds as if you need to get yourself to a neuro who knows headaches as soon as possible. Your symptoms sound dangerous. Alcohol is definitely a no-no for active clusters.

Title: Re: not sure its really a cluster
Post by andy on Apr 29^th, 2005, 11:02am

Sounds like it could be Trigeminal Neuralgia, TN

Very painful shock like pain that shoots up your face.

Do a google search on Trigeminal Neuralgia and see what you come up with.

http://www.mayoclinic.com/invoke.cfm?id=DS00446

Tegritol was the only med that helped me get through it.
............andy

Title: Re: not sure its really a cluster
Post by jenk on Apr 29^th, 2005, 11:03am

thats what i keep telling them! they started back up again a few days ago.... everytime they start, its worse and last longer. I had a student in the next office who asked a co-worker if i had terrets (spelling may be wrong). I am willing to live with pain, but this is nuts. Thanks for you input!

Title: Re: not sure its really a cluster
Post by jenk on Apr 29^th, 2005, 11:07am

thanks andy!! i'll check it out!

Title: Re: not sure its really a cluster
Post by andy on Apr 29^th, 2005, 11:13am

Get to a neurologist. Its easier to diagnose TN than Cluster Headaches. Its also called "tic doloreaux"

Good luck and hope its something other than TN or CH

.........andy

Title: Re: not sure its really a cluster
Post by mcf69 on Apr 29^th, 2005, 11:56am

Jenk,
There is a third disorder related to the trigeminal nerve (which I can't think of right now), that will cause the symptoms you've mentioned, bouts of pain rapidly following one another, followed by remission, then over and over again. Check it out with a neuro, and I'll see if I can find any more info on it.

Title: Re: not sure its really a cluster
Post by mcf69 on Apr 29^th, 2005, 12:05pm

Just found it, Paroxysmal Hemicrania:
http://www.emedicine.com/NEURO/topic67.htm
It does share alot of symptoms with clusters, but is different in the frequency of attacks, and it is quite a bit rarer than clusters

Title: Re: not sure its really a cluster
Post by Bill-G on Apr 29^th, 2005, 12:35pm

I've just been pooping on the read the boards but your symptoms stuck me as being something other than CH

you say:
I can have up to 3 in a minute and 20 in an hr.

You might try looking up 'Ice pick Headaches'

Hope this helps :)

Title: Re: not sure its really a cluster
Post by E-Double on Apr 29^th, 2005, 12:39pm

Look up....

SUNCT

Idiopathic stabbing headaches...(icepicks)

Paroxysmal Hemicrania

In addition to CH I get icepicks......fun shit but completely undercontrol with indomethacin.

All the above HA's are treatable with indo.

Good luck!!

E

Title: Re: not sure its really a cluster
Post by eyes_afire on Apr 29^th, 2005, 6:32pm

Here's some more links to help. Either way, you must see a doc.

chronic paroxysmal hemicrania:

http://www.ninds.nih.gov/disorders/paroxysmal_hemicrania/paroxysmal_hemicrania.htm

http://www.headaches.org/consumer/topicsheets/paroxysmal.html

http://www.emedicine.com/NEURO/topic67.htm

SUNCT syndrome:

http://www.ninds.nih.gov/disorders/sunct/sunct.htm

http://www.imigraine.net/other/sunct.html

idiopathic stabbing headache:

http://www.imigraine.net/other/stab.html

http://www.relieve-migraine-headache.com/ice-pick-headache.html

The following links are of headaches that are not TACs but are often confused with TACs:

trigeminal neuralgia:

http://www.achenet.org/articles/18.php

http://www.ninds.nih.gov/disorders/trigeminal_neuralgia/trigeminal_neuralgia.htm

http://www.headaches.org/consumer/topicsheets/trigeminalneuralgia.html

DISCLAIMER: This is no substitute for a diagnosis. See the neurologist for a diagnosis. This is only to point people in the right direction

--- Steve

Title: Re: not sure its really a cluster
Post by TonyG1 on Apr 30^th, 2005, 8:07pm

on 04/29/05 at 10:51:44, jenk wrote:

After the 4th or 5th day, my left side of my face gets funny and my vision and reflexes slow. I also seem to loose some ability to choose words. This improves when they stop, but that could be weeks. Also after a few days, I run the risk of blacking out for a few seconds (again, makes driving difficult!).

Hey Jenk -- Sorry you're having problems !! :(

This is troublesome ...Consider this the 11th commandment --- [smiley=deal2.gif]Get thee to a good Neuro to have this checked out !!!

Title: Re: not sure its really a cluster
Post by jenk on May 2^nd, 2005, 9:22am

Thanks for all the helpful info! For those of you with the ice-pick headaches, any good home remedies? New job, no health insurance for awhile longer.... and curled up in a ball on my bedroom floor just isn't cutting it! Tried over the counter stuff, that of course is worthless... tried breathing deeper, vinegar on a warm cloth on my head, tried caffeine... My regular miagrain meds don't help a bit.... Suggestions?

Title: Re: not sure its really a cluster
Post by thomas on May 2^nd, 2005, 12:17pm

Sounds an awful lot like CPH, which Eyes has listed a link for above.