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        New Message Board Archives >> 2002 Posts >> I can't believe this is happening
        
(Message started by: terrii on Aug 8^th, 2002, 3:20pm)

Title: I can't believe this is happening
Post by terrii on Aug 8^th, 2002, 3:20pm

I was just diagnosed this week with chronic. I've spent so long thinking I had serious sinus problems...that's what the doctors told me. I have been suffering for 5 weeks. Multiple attacks a day. I can't tell when one is ending and the next is begining. My eye is bloodshot and my boss thinks I'm stoned. Earlier episodes NEVER felt like this. I think about it all the time. I look at my eyes constantly to predict the next one. What a miserable exsistance this is. My doctor has me on Skelaxin...but I see a Neuro in a week and hopefully can get the oxegen treatment I read about so often. Anyway, thanks for being here to share in my pain. Noone seems to understand. I guess not even me. :'(

Title: Re: I can't believe this is happening
Post by Ted on Aug 8^th, 2002, 3:28pm

Sorry you're hurting, Terrii. The good news is that if you've only been suffereing for 5 weeks you're nowhere close to chronic. That would mean you suffer at least a year straight with no more than a two-week remission. Hopefully you'll be like most sufferers and remain episodic. Even better would be if you were completely misdiagnosed and you don't have CHs at all.
Good luck and welcome.

Title: Re: I can't believe this is happening
Post by terrii on Aug 8^th, 2002, 3:35pm

Thanks for the words of encourangement. After the last time, I had a week and a half pain free. I thought it was over. Why does the doctor use "chronic" is that becuase he has no idea what he's saying?

Title: Re: I can't believe this is happening
Post by BobG on Aug 8^th, 2002, 3:37pm

Welcome to the board terrii.

Skelaxin is a muscle relaxant. It works by blocking nerve impulses (or pain sensations) that are sent to your brain. I don't remember anyone else saying they have used it for cluster headaches. If it works for you that's great!

But, you might click the 'medical info' button on the left side of the screen. There you'll find a lot of information on meds for this condition.

Let us know what you find out at the neuro visit next week.

Title: Re: I can't believe this is happening
Post by Ted on Aug 8^th, 2002, 3:38pm

It might be easier to know better if you tell us more about your headaches and how long the cycles last for and how long the remissions last for.
It's possible the doctor doesn't know what he's talking about. Has been known to happen once or twice when dealing with CHs.

Title: Re: I can't believe this is happening
Post by terrii on Aug 8^th, 2002, 3:46pm

Thanks for your caring!!! It means tons. I have had "headaches" since 1992. Daily with relief happening in no more than 1-3 week intervals. First, I was told that it was due to hormones, then I was told sinus, then alergies to my pets. I really really believed the allergy one becuase I sufferd so long and refused to leave or give away any of my pets. I have been on every medication possible, had scans and shots and tests. I'd never heard of CH until yesterday. My guess is that it is the length of time I have been suffering that leads my doctor to "chronic"...in this case, I'd take anything less. I agree totally that this thing must be misdiagnosed often. Mine misdiagnosis lasted a decade.

Title: Re: I can't believe this is happening
Post by Charlie on Aug 8^th, 2002, 4:18pm

Welcome Terrii to our little world. If indeed these are clusters, you've foud a place where we understand. You are not alone and if you're like me, you're surprised there are so many sufferers.

Let us know how you make out with the neurologist. They will run a lot of painless but boring tests and hopefully, youll get a good one. Meanwhile, here are two links that you might find useful:

http://www.chhelp.org/circ.html

On your side old Charlie

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

Title: Re: I can't believe this is happening
Post by Jim R on Aug 8^th, 2002, 4:30pm

Wwelcome Terrii! Sorry you're here but it's one of the best places to be when you are thus afflicted...

Funny you should mention Skelaxin - my neuro gave me a prescription for Norflex which is also a skeletal muscle relaxant. The reason he gave it to me was becasue I told him that when I had gone to the ER and they had shot me full of morphine which made my CH much worse, the then gave me droperidol, which took the bastard away. Norflex and droperidol are similar acting....

I use O2 and have had some success with it in the past, but this cycle (I'm not chronic, but have loooong cycles) it works for 5 monutes and then it's back. Looks like I'll be back on lithium soon unless my me and my neuro and explore some other treatment. Best wishes Terrii and hope to hear more from you in the future, after your neuro visit. PFDANs to you. - Jim R

Title: Re: I can't believe this is happening
Post by terrii on Aug 8^th, 2002, 4:50pm

Pfdans?

Title: Re: I can't believe this is happening
Post by Slammy on Aug 8^th, 2002, 5:19pm

PFDAN = prolonged foreplay, day and night. ;D

Slammy 8)

Title: Re: I can't believe this is happening
Post by Drk^Angel on Aug 8^th, 2002, 5:25pm

Welcome to the board! Sorry that the beast is stomping on your cranium while wearing dirty golf shoes. Welcome to the family!

PFDAN (Pain Free Days and Nights).... Drk^Angel

Title: Re: I can't believe this is happening
Post by kristi on Aug 8^th, 2002, 7:54pm

Slammy,

Leave the poor girl alone :-X.....she's too new to be forced to deal with a gutterboy like you yet...... ;D

As Drk^Angel said.....PFDAN (pain free days and nights)

K

Title: Re: I can't believe this is happening
Post by don on Aug 8^th, 2002, 11:17pm

Slammy the Gutterboy. I like that. Congratulations Slam!

Title: Re: I can't believe this is happening
Post by Slammy on Aug 9^th, 2002, 10:36am

on 08/08/02 at 23:17:35, don wrote:

Slammy the Gutterboy. I like that. Congratulations Slam!

what what? Did I win something? :D

gutterboy..... come here, kristi, I'll show you your gutterboy! ;D

Slammy 8)

Title: Re: I can't believe this is happening
Post by debbie4278 on Aug 9^th, 2002, 10:54am

When I go to the doctor, the first thing I ask now is "what do you know about cluster headackes?" They might give you an answer that sounds half way decent, then somewhere in the conversation he will refer to a "migraine", and then you know. He has no idea what a cluster is. If we could only bring one on in the doctors office. I'm sure they would freak and call 911.
Welcome Terri.
Deb

Title: Re: I can't believe this is happening
Post by kim on Aug 9^th, 2002, 11:03pm

Hey Terri,

Try sitting in the chair after the "official office visit" - you know, you have to take what I refer to as the "drunk test" - that's where you have to do these exercises that resemble sobriety tests.......Then doc hits knees with little hammer and you kick him in the nose (or nuts ;D).....After which he/she confirms confidently that you do indeed have ch (the doc has probably never had A SINGLE ch patient other than YU ;D).................
Seriously, it's important to find a knowledgeable doc. but ultimately you wil play a major role as well. My advice to you is educate yourself and be assertive about who you choose as a doctor. Lotsa dummies out there messing with us. Lessen the strain by finding doctor who is willing to listen and work with you. It could take a while.................. ::) PATIENCE. PERSEVERENCE.

Well wishes. Kim