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        New Message Board Archives >> 2002 Posts >> Not sure if I'm one of you or not
        
(Message started by: IrishChris on Dec 20^th, 2002, 8:25pm)

Title: Not sure if I'm one of you or not
Post by IrishChris on Dec 20^th, 2002, 8:25pm

Hey guys. I just started researching this. I've been suffering from what I thought were sinus headaches for about ten years. After reading about cluster headaches, it sounds a lot like my problem. I get a sever pain over my right eye. Sort of like something sharp is pressing just above the socket. My eye turns red, eyelid droops, my eye starts tearing and I can't stand still. Laying down doesn't seem to help but it doesn't matter since I can't sleep when I have one.

The pain comes a couple of times a month and usually lasts for several hours with a few brief periods of reprieve. The one I have now has been occuring on and off for about 36 hours.

My doctors over the years have called it sinusitis and have given me everything from percoset to vicotin (sorry about the spelling). Sometimes the drugs dull the pain along with everything else.

I'm not too into self diagnosis and want to make sure that I am suffering similarly before I call my doctor and tell him I may be suffering from cluster headaches.

I know you guys won't diagnose but does anyone else have the same sort of symptoms. I guess these things are common among smokere but I don't smoke. I'm not to the point where I am going to beat my head on the floor, but I'm close to crying like a little kid.

Thanks for any advise you guys might offer.

Title: Re: Not sure if I'm one of you or not
Post by Mark C on Dec 20^th, 2002, 8:31pm

Hello IC,
Sounds familiar.....I hope you are not one of, for your sake, but if you are we are always here. I am going to attach a couple of links, I hope they help. Research this site and the OUCH site for most of the information known to man about CH.
Good Luck,
Mark

http://www.clusterheadaches.org/diagnose.htm
http://www.clusterheadaches.org/library/general/index.htm
http://www.clusterheadaches.org/library/medications/index.htm

Title: Re: Not sure if I'm one of you or not
Post by domm on Dec 20^th, 2002, 9:26pm

Irish - sorry to hear you are in pain, but if you have CH, you found the right place. Follow up on Mark's post and get yourself to a neuro or at least a doc who may know something about CH. There's a list posted on the OUCH website (button on the left) and you might find one in your hometown.
Good luck in finding what works for you
domm

Title: Re: Not sure if I'm one of you or not
Post by 9erfan on Dec 20^th, 2002, 9:35pm

Hi Chris,

Unfortunately, it sounds like you may have clusters. The things that stand out from what you told us is that your pain is 1-sided, your eye droops, gets red, and tears, and you can't sit still. These are classic cluster symptoms. Most of us here were all mis-diagnosed with sinus problems before getting our cluster diagnosis.

Make sure to take the cluster quiz and let us know how you do on that. The only thing I thought was a little different about your description was the time-frame for the pain. You said they come a couple times a month. Usually (and I stress USUALLY) they come in blocks of time where you will get the headaches day after day after day'; anywhere from 2 weeks to several months (or longer for some of us).

Maybe I'm just mis-understanding your description of the occurences because your other symptoms sound dead-on :(.

Read as much info as you can on this site. You will be able to enlighten your Doctors with all this info! ;D

Take care & I hope that things get better for you!

Virginia

Title: Re: Not sure if I'm one of you or not
Post by dodger on Dec 20^th, 2002, 11:03pm

Irish: Like you, I was mis-diagnosed the first 5 yrs. I had these things. 3-4 Dr's told me it was sinustis. Found out what it really was after reading an article about C.H's., Almost started to shake, I could have written that article myself!! Get yourself into a good Neuro. and make sure he knows something about C.H.s. Stay tuned to this site!!

Title: Re: Not sure if I'm one of you or not
Post by Charlie on Dec 21^st, 2002, 1:16am

Hi IC:

Sorry you had reason to find us but welcome. Sad to say, you gave a pretty good description of clusters. They will wake you out of a sound sleep and you can't sit still. They disappear suddenly and hit you again and again. When the cycle ends, it's like being released from prison.

Here, you will find some ideas on how to manage this horror. You should see a neurologist as well.

Stick around and let us know how you're getting along. We'll do the same.

Charlie

Title: Re: Not sure if I'm one of you or not
Post by OneEyeBlind on Dec 21^st, 2002, 5:05am

Irish, welcome to the board. Follow the tips above and let us know how you make out !

Title: Re: Not sure if I'm one of you or not
Post by IrishChris on Dec 21^st, 2002, 9:20am

Thanks for all the help folks.

Virginia, you didn't mis-understand me. I usually get these a couple of times a month not in blocks like you said. That's why I'm not sure about this. They come on really quickly and disappear almost as quickly. They usually last several hours. Except for the one I have now which has been continuing on and off for more than two days.

Have any of you had CT scans. I had an ENT send me for a CT scan of my sinuses and it only turned up a small bone spur and a slighty deviated septum. He suggested that the bone spur could be the problem, but when I asked him when you could remove it, he was reluctant to operate. Kind of suggested to me that he didn't really think the spur was the problem. Is there normally anything that shows up on CT that could alert a physcian? If so, I may have the ENT send the films to my new doctor.

Title: Re: Not sure if I'm one of you or not
Post by jonny on Dec 21^st, 2002, 9:54am

Sure, CT scan, MRI....the works!!

Hope your new Doc is a Neurologist for your sake.

Gotta love it when they slide you in head first into that MRI machine with that friggin helmet on, nothing says coffin better than that.....LOL ;D

......................jonny :D

Title: Re: Not sure if I'm one of you or not
Post by Svenn on Dec 21^st, 2002, 10:14am

think the pet-machine says that word a lot better Jonny :)

Svenn

Title: Re: Not sure if I'm one of you or not
Post by Ted on Dec 22^nd, 2002, 3:21am

Please don't let these guys stop you from what you need to do. They think they're funny with their jokes but they do nothing more than make people feel unwelcome. There is nothing worse than humor, if you ask me. Especially when you ask a serious question and are facing serious pain, like you claim to be. So, again, my apologies for their less-than-serious tone.
Here's what I'd do:
- Ask your neurologist to give you an MRI and as he responds, squirt water in his face from the fake rose on your lapel.

- When the neurologist scrapes your left foot, start scratching your right hand.

- Tell your doctor you think you've noticed attacks coming on when you eat Chinese food and the weird thing is you want another attack 30 minutes later.

- Claim you read that Imitrex is a good abortive yet you can't get your girlfriend to use it after sex.

Title: Re: Not sure if I'm one of you or not
Post by 9erfan on Dec 22^nd, 2002, 7:04pm

OH GEEZ TED!! You had me rolling!!! ;D ;D

Chris - Get the cat scan, and the MRI, and whatever other tests they recommend to rule out anything else. But if you have clusters, all these test will come out normal which will then just re-enforce the feeling that you must be crazy! Trust me, we've all gone through it. But take the tests as a precaution anyway.

Virginia

Title: Re: Not sure if I'm one of you or not
Post by Drk^Angel on Dec 23^rd, 2002, 1:16pm

Welcome to the board! Sorry that the beast is slowly dripping hot acid on your cranium above your eye, like a psychotic sadist's version of the chinese water torture. Good luck!

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

Title: Re: Not sure if I'm one of you or not
Post by terrylch on Dec 25^th, 2002, 10:03am

Hello, I do not know how to get around on this board or whatever it is. I came here to try to tell someone how I have prevented cluster headaches for over 42 years now and I can't find any where to post a message about it. I do not even know if this is being sent to anyone or not. anyway my e-mail address is terrylch@msn.com if you are interested in what I do to keep from getting a cluster headache.
bye, terry

Title: Re: Not sure if I'm one of you or not
Post by jonny on Dec 25^th, 2002, 10:50am

on 12/25/02 at 10:03:31, terrylch wrote:

Hmmmmmmm!!!

Ok!!, I sent my e-mail (Tapping foot waiting for reply!!)

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

Title: Re: Not sure if I'm one of you or not
Post by domm on Dec 25^th, 2002, 11:17am

on 12/25/02 at 10:03:31, terrylch wrote:

Hello, I do not know how to get around on this board or whatever it is.

Well - you've posted this message four times, why not post what you know?