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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> The latest addition
        
(Message started by: Pellsey on Jan 17^th, 2007, 9:04am)

Title: The latest addition
Post by Pellsey on Jan 17^th, 2007, 9:04am

G'day, am i glad to find somewhere that has people that understand. I can't believe i never thought of looking on the net for others like me before [smiley=huh.gif]

I've lived with the demon for about five years now. At first I couldn't believe the pain. I din't deserve that. I rememebred being told as a child that on my right side I had two extra wisdom teeth. One extra on top and one on the bottom. I was sure that that must have been the cause. I went to a dentist and he told me that the type of headache I was describing didn't sound like teeth related pain. He told me how much I was looking at paying to get them all taken out and i didn't have the money. It eventually went away and life went back to normal. For about six months. If I thought the first ones were a number 10 on the pain scale then I was kidding myself. It came back with a vengeance. I was at the doctor every second day. He diagnosed me with Cluster Headache. Told me it was rare and very painful. [/i]Like he had to tell me it was painful![i] He prescribed Cafergot. It did nothing. I spent every night rocking on the end of the bed praying for the pain to stop. It just does and I'm left with a dull ache that hangs around pretty much for the few months I endure.

The pain I get starts as an ache just above my right eye. It starts to stab and twist in the back of my eye then blows down to where the base of my skull meets the spine. The whole right side of my face drops and my cheek bone usually feels like it's trying to rip out of my face. Pretty typical from what i've been reading. It's episodic and usually two or three a day and two at night when they're really bad.

I was convinced that the doctor was full of sh!t and it was still my wisdom teeth. It went away and life was great again. At the start of 2005 it turned my whole life upside down. Day in day out. At work at home. Didn't matter. I was straight to a Maxillo Facial Surgeon. "RIP EM OUT NOW!" Had an OPG and he said the same as the dentist before him. Not your wisdom teeth causing those headaches. I got the bottom ones out anyway. Fat lot of good that did me. Spent three weeks with CH and tooth ache. They went away about the same time the tooth pain did and I sort of convinced myself that the tooth extraction worked. Deep down I knew I was kidding myself and it took about four months for it to prove me right. Even worse again. I don't think i could ever rate one of these haedaches as a 10 in the pain factor because every time I think it couldn't be any worse the next one lets me know that it can be a lot worse.

The doctor was still saying Cluster Headaches. I had a CT scan and hoped I had a tumor. Not nice to say I know, especially for someone who does have a tumor but my logic was that if I had a tumor they could take it out or it would kill me. Either way the pain would stop. CT scan came back fine. Out of pocket a few hundred dollars. I saw a neurologist and he diagnosed the same thing as the doctor had. Cluster Headaches. He couldn't tell me much about them but I could tell him heaps. I went through Imigrin, Ergotamine, Oxygen and the occassional Pethadine shot when I had to go to hospital and about $2000 on meds.

Believe it or not but I can actually say a poitive thing about Cluster Headaches. They were the sole reason for me giving up smoking (In 2005) after 17 years at about 30 a day. I gave up cold turkey and haven't gone back.

Unfortunately the demon has come back a week ago. So far quite mild compared to the last lot. (I just put my fist through my wooden desk). I've stocked up on all the strongest non presciption meds I can get. The expensive prescribed stuff works the same as the other stuff for me anyway. Barely.

I've a wife and daughter (3 yrs old). My wife knows to just leave me alone to cope when I get one and she says she understands but I know she doesn't because I know that only you who get them can understand. The human mind shouldn't even be able to imagine this sort of pain let alone experience it. She is very supportive though. It's ruined more family days out than I care to say and our social life and personal life is non-existent when i'm suffering an episode.

I hate when I'm trying to explain to people why it is that i'm sat at my desk at work balling my eyes out, sweating profusely and looking like i've had a stroke and they say, "Yeah, i've had a migrane before, Panadeine Forte works great". I'm sure you all have had similar responses. I've never met another Clusterhead yet. Am i glad to know that this place exists. Sorry that you all suffer this terrible affliction but glad to know that i'm not on my own doing the dance. Believe me I know exactly why you call it that. I look forward to getting to know you

Title: Re: The latest addition
Post by Shedz on Jan 17^th, 2007, 9:09am

Welcome abord chap, its bad that you have to be here but you've definately found the right place to be ;)

Title: Re: The latest addition
Post by Mattrf on Jan 17^th, 2007, 12:54pm

Pull up a chair and do a lot of reading, there is a lot of information here and a lot to take to your doctor, you will need to educate him to take better care of you.
I am very sorry you had to find us but glad you did, welcome to the family.

Matt

Title: Re: The latest addition
Post by Bob_Johnson on Jan 17^th, 2007, 1:24pm

Two excellent sources of treatment option information.

http://www.headachedrugs.com/pdf/ha2006.pdf Dr. Robbins site.
=========================================================================
Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S. (2002)

http://www.brightok.net/~mnjday/chtherapy.pdf

Title: Re: The latest addition
Post by Guiseppi on Jan 17^th, 2007, 1:51pm

Hang on to the cafergot but get prescribed some oxygen!!! cafergot by itself never worked for me either, it takes too long to get into your system. By the time you absorb the stuff you're already past an 8.

Now when the beast starts growling I pop 2 cafergot and fire off the oxygen tank. The 02 holds it at bay for 10 minutes or so while the cafergot ramps up, works great for me. Many have success using just the oxygen.

Read up on the preventatives too since it sounds like you're an episodic. When I go on cycle I do a 2 week prednisone taper while I ramp up on lithium. At 1200 mg a day it blocks 90% of my headaches. The oxygen and cafergot cover most of the rest, with imitrex jabs reserved for the worst.

Welcome to your new second home. Please let us know when you find something that works as that's how everyone learns around here.

Guiseppi

Title: Re: The latest addition
Post by swimchica623 on Jan 17^th, 2007, 2:23pm

Welcome! I totally understand what you mean about people saying "yeah I get migraines" I tell them well I used to get migraines, wish I still had them, much rather be puking and have my head under a pillow and be able to sleep to get away from the pain. So much more enjoyable than banging my head against the wall.
I second the o2 its wonderful. It might be tricky to get the prescription right, I FINALLY got mine figuring out after dealing with the supplier, dr, and insurance company. But its correct and probably woudln't be as fast as it was without the help of this place!!!!
Hope you ahve many pf days ahead of you. :-)
Lisa

Title: Re: The latest addition
Post by AussieBrian on Jan 17^th, 2007, 4:40pm

And welcome to the nut-hut. Roll up, roll up, every player wins a prize. You didn't mention whether or not you've Oxygen which is an absolute blessing for so many.

Dunno where Barry from Karatha is just now, probably out hugging trees again, but here's a thingummy he put together with Mr Happy showing how to go about getting here in Oz.

http://mushys.com/kiwi

Anything else you want to know, just ask. If we don't know the answer we'll make one up.

Cheers and beers,

Brian up north.

Title: Re: The latest addition
Post by edbeek on Jan 17^th, 2007, 5:38pm

on 01/17/07 at 13:51:59, Guiseppi wrote:

When I was first diagnosed and prescribed Cafergot for night-time episodic CH, I used it more or less an a preventative.
I would take one 2 hours before going to sleep so it would be in my system by the time the CH was due to hit.
It was my 'silver bullet' as I never had another hit that cycle, and subsequent cycles were aborted too after taking a cafergot/day at the first signs that the cycle was starting.
Worked for me, so maybe worth a try.
Unfortunately Cafergot did nothing for me this cycle.

Title: Re: The latest addition
Post by Guiseppi on Jan 17^th, 2007, 6:39pm

Unfortunately Cafergot did nothing for me this cycle.

And there is the cruelest part of this damnable malady, just when you let your guard down and think you have something that works, it morphs on you again!!!!!

Guiseppi