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        New Message Board Archives >> Jan-Mar 2004 >> Hello, my name is Jigzaw and I'm a Clusterhead...
        
(Message started by: Jigzaw on Jan 28^th, 2004, 8:33am)

Title: Hello, my name is Jigzaw and I'm a Clusterhead...
Post by Jigzaw on Jan 28^th, 2004, 8:33am

Yes, I'm a Clusterhead. Been that since 1995 I think. I'm now 24 years old and that means I've had the "privilige" of knowing the Beast for around 9 years now. Not the best of friendships you might say...

I hate the fucker more than I could ever express trough words (at least with my bad spelling...hehe), allthough I have been known to try at several occasions.

Luckily for me, I've been spared the really bad attacks for some time now. I think the last really bad attacks (like 8 and above on the Kip scale) was in 2002. Now I tend to lie around 5-7 on the Kip scale. I had a 7/8 just half an hour ago though...

At least now I have meds for this shit. Imigran 20mg nasal spray is my drug of choice these days. But I have been known to venture in the world of paragin-forte and other like it with litte or no success. It is sad to know that this is a illness not wellknown in the medicine community. My doc just looked stupid at me when I told him what meds I needed and for what. "It's just a headache" he said. I just replied with "you have no idea what you're talking about, just give me the perscription!" as I have done several times before (to other docs...).
I just thank God that I met that medicine student the last time I went to the doc during one of my really bad sessions in '98. It took him 5 minutes (2 min to diagnose, 3 min to look it up just to be sure) to figure out what I had been fighting for 3 years without any help or understanding from the medicine community. If I had his name I'd send him flowers every time I use the spray. It doesn't cure me, nor does it help if the attacks are really bad. But most of the time it helps reduce the playing time for the band to a minimum. 15-20 mins normaly. It's hell, but in an amount I can survive.

Anyways, why am I telling you this? Don't know, just felt like sharing my story with you :)

Be well my fellow Clusterheads ;;D

Title: Re: Hello, my name is Jigzaw and I'm a Clusterhead
Post by thomas on Jan 28^th, 2004, 8:38am

Welcome aboad Jigzaw....... hope better days are ahead. :)

Title: Re: Hello, my name is Jigzaw and I'm a Clusterhead
Post by Jigzaw on Jan 28^th, 2004, 8:48am

Tnx Thomas, right now it's all sunshine ;;D

Title: Re: Hello, my name is Jigzaw and I'm a Clusterhead
Post by Miss_Deleny on Jan 28^th, 2004, 8:50am

Welcome home Jigzaw! Sorry you had to look us up but sure glad you found us. There isn't any better place to be than here for support, knowledge and caring people.

~April~

Title: Re: Hello, my name is Jigzaw and I'm a Clusterhead
Post by Filbert on Jan 28^th, 2004, 8:54am

Hi Jigsaw awarm welcome from me too -sorry you have CH though!
Cheers Filbert

Title: Re: Hello, my name is Jigzaw and I'm a Clusterhead
Post by floridian on Jan 28^th, 2004, 11:19am

Velkommen, Jigzaw, Jeg håper det vi kanne hjelpe du. Several other Norsk clusterheads hang out here, and some good medical research on CH comes from your country. I spent 5 years in the Norwegian refugee camp called Iceland - very nice place, but they talk like they are living in the year 950 A.D. ;)

Title: Re: Hello, my name is Jigzaw and I'm a Clusterhead
Post by Gena on Jan 28^th, 2004, 11:24am

Welcome

Title: Re: Hello, my name is Jigzaw and I'm a Clusterhead
Post by Edna on Jan 28^th, 2004, 12:10pm

Welcome Jigzaw! Glad you found this place.

Why you tell us?? WELL, because we care and it's our job to be here to listen to you when you need.

Good luck and keep us posted,
EDNA

Title: Re: Hello, my name is Jigzaw and I'm a Clusterhead
Post by ClusterChuck on Jan 28^th, 2004, 12:26pm

Welcome aboard, Jigsaw!

Glad you have found some relief! Keep reading, here, and you will learn plenty, and give you more information to train your doctor with.

on 01/28/04 at 12:10:26, Edna wrote:

because we care and it's our job to be here to listen to you when you need.

Don't believe her! She is NOSEY! That is why she wants to know!!! Dern WIMMINS!!! Sheesh! ;) ;;D

Chuck

Title: Re: Hello, my name is Jigzaw and I'm a Clusterhead
Post by Callico_Kid on Jan 28^th, 2004, 1:57pm

Welcome aboard. Glad you found us and shared your story. There are a lot of caring people here to help.

Check the med info to your left. There are several other options you may want to educate your Dr. with, particularly oxygen. Check the oxygen info button as well. That has been a lifesaver to many of us.

Wish you well and PF.

jc

Title: Re: Hello, my name is Jigzaw and I'm a Clusterhead
Post by aprilbee on Jan 28^th, 2004, 2:14pm

Welcom to our/your home Jigzaw!

Title: Re: Hello, my name is Jigzaw and I'm a Clusterhead
Post by Cerberus on Jan 28^th, 2004, 4:41pm

Greetings......

You found the right place, GOT O2?

Ramon

Title: Re: Hello, my name is Jigzaw and I'm a Clusterhead
Post by Prense on Jan 28^th, 2004, 7:42pm

Welcome aboard Jigzaw!

Chris

Title: Re: Hello, my name is Jigzaw and I'm a Clusterhead
Post by captdshea on Jan 28^th, 2004, 8:19pm

Welcome

I'm glad you meet that medical student at a young age.

pfdan

David

Title: Re: Hello, my name is Jigzaw and I'm a Clusterhead
Post by BlueMeanie on Jan 28^th, 2004, 8:42pm

WELCOME JIGZAW !!

Read all the info you can. Lots of help here.

Title: Re: Hello, my name is Jigzaw and I'm a Clusterhead
Post by TxBasslady on Jan 28^th, 2004, 11:28pm

Welcome to the board, Jigzaw......

Lots of great support here.

Usually someone here round the clock.

PF vibes,

Jean

Title: Re: Hello, my name is Jigzaw and I'm a Clusterhead
Post by Wifeofchman on Jan 28^th, 2004, 11:51pm

Welcome, I hope you can have more PF days than not.

Title: Re: Hello, my name is Jigzaw and I'm a Clusterhead
Post by Charlie on Jan 29^th, 2004, 3:47am

Welcome aboard Jigzaw. As they say: If you stick around you'll find some good ideas for dealing with this horror and lots of support.

I know what you mean about doctors. I was lucky to know a neurologist when I developed this thing so my diagnosis wasn't a problem. However, once I had to see another sawbones to get a new precription. I had no luck and it's only because I was familiar with these bizarros that I knew enough to tell him I wasn't interested in "exploratory" surgery for a "possiblity of an anacronoidal cyst." God. The sad thing is that this creep still has a license.

Here's a technique that was very effective for me:

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

Let us know how things are going.

Charlie