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Topic: Hello, my name is Jigzaw and I'm a Clusterhead... (Read 417 times) |
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Jigzaw
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Hello, my name is Jigzaw and I'm a Clusterhead...
« on: Jan 28th, 2004, 8:33am » |
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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 
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thomas
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Re: Hello, my name is Jigzaw and I'm a Clusterhead
« Reply #1 on: Jan 28th, 2004, 8:38am » |
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Welcome aboad Jigzaw....... hope better days are ahead.
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Jigzaw
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Re: Hello, my name is Jigzaw and I'm a Clusterhead
« Reply #2 on: Jan 28th, 2004, 8:48am » |
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Tnx Thomas, right now it's all sunshine
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Miss_Deleny
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To live life is to know love
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Re: Hello, my name is Jigzaw and I'm a Clusterhead
« Reply #3 on: Jan 28th, 2004, 8:50am » |
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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~
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You never know when love will knock on your door, when it does, embrace it and hold on to it forever!
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Filbert
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Re: Hello, my name is Jigzaw and I'm a Clusterhead
« Reply #4 on: Jan 28th, 2004, 8:54am » |
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Hi Jigsaw awarm welcome from me too -sorry you have CH though!
Cheers Filbert
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floridian
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Re: Hello, my name is Jigzaw and I'm a Clusterhead
« Reply #5 on: Jan 28th, 2004, 11:19am » |
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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. 
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| « Last Edit: Jan 28th, 2004, 11:26am by floridian » |
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Killroy 2.0
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Kilroy 2.0 is Here! Kilroy 2.0 is Everywhere!
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Re: Hello, my name is Jigzaw and I'm a Clusterhead
« Reply #6 on: Jan 28th, 2004, 11:24am » |
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Welcome
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Do the walls speak to you? Do you follow the Geek Messiah? DO YOU COMPLY?!
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Edna
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Re: Hello, my name is Jigzaw and I'm a Clusterhead
« Reply #7 on: Jan 28th, 2004, 12:10pm » |
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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
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ClusterChuck
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The BEAST rises again, and again, and again, and .
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Re: Hello, my name is Jigzaw and I'm a Clusterhead
« Reply #8 on: Jan 28th, 2004, 12:26pm » |
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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 Jan 28th, 2004, 12:10pm, Edna wrote:because we care and it's our job to be here to listen to you when you need.
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Don't believe her! She is NOSEY! That is why she wants to know!!! Dern WIMMINS!!! Sheesh!
Chuck
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"No man can be happy without a friend, nor be sure of his friend till he is unhappy."
Thomas Fuller
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Callico
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Re: Hello, my name is Jigzaw and I'm a Clusterhead
« Reply #9 on: Jan 28th, 2004, 1:57pm » |
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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
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"When He acts on the left, I cannot behold Him; He turns on the right I cannot see Him. But He knows the way that I take; when He has tried me I shall come forth as gold." Job23:9,10
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aprilbee
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Re: Hello, my name is Jigzaw and I'm a Clusterhead
« Reply #10 on: Jan 28th, 2004, 2:14pm » |
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Welcom to our/your home Jigzaw!
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Cerberus
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Re: Hello, my name is Jigzaw and I'm a Clusterhead
« Reply #11 on: Jan 28th, 2004, 4:41pm » |
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Greetings......
You found the right place, GOT O2?
Ramon
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I would rather face the end with terror than terror without end. - (Deitrich Sawatsky 194?)
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Prense
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Re: Hello, my name is Jigzaw and I'm a Clusterhead
« Reply #12 on: Jan 28th, 2004, 7:42pm » |
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Welcome aboard Jigzaw!
Chris
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captdshea
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Re: Hello, my name is Jigzaw and I'm a Clusterhead
« Reply #13 on: Jan 28th, 2004, 8:19pm » |
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Welcome
I'm glad you meet that medical student at a young age.
pfdan
David
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"Seek knowledge and truth"
"Respect divergent points of view"
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BlueMeanie
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Re: Hello, my name is Jigzaw and I'm a Clusterhead
« Reply #14 on: Jan 28th, 2004, 8:42pm » |
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WELCOME JIGZAW !!
Read all the info you can. Lots of help here.
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TxBasslady
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Re: Hello, my name is Jigzaw and I'm a Clusterhead
« Reply #15 on: Jan 28th, 2004, 11:28pm » |
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Welcome to the board, Jigzaw......
Lots of great support here.
Usually someone here round the clock.
PF vibes,
Jean
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How lucky I am... to have known someone who was so hard to say goodbye too.
Take a kid fishin
www.takemefishin.org
I adopted a Vietnam POW/MIA from El Paso, Texas! 
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Wifeofchman
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Re: Hello, my name is Jigzaw and I'm a Clusterhead
« Reply #16 on: Jan 28th, 2004, 11:51pm » |
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Welcome, I hope you can have more PF days than not.
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TTYL,
Carrie
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Charlie
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Re: Hello, my name is Jigzaw and I'm a Clusterhead
« Reply #17 on: Jan 29th, 2004, 3:47am » |
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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
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There is nothing more satisfying than being shot at without result---Winston Churchill
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