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Topic: What kind of people are we??? (Read 1567 times) |
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Wendy1
New Board Veteran
Posts: 154
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Re: What kind of people are we???
« Reply #50 on: May 13th, 2004, 10:11pm » |
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I guess I would ask the question, not as to what are we.... but to what we have or don't have that 'normal' (i.e. ppl who do not experience clusters) ppl have or don't have....
And that is where our answer lies to a cure.
Why should this be so damn hard to figure out. There have been some really defining studies about the malfunctioned hypo. Circadia Rythym. Etc.
Why can't someone figure out which one of these is causing the blood vessel to swell and push on the nerve. They can fix trigeminal neurolgia, why can't they fix us.
Umm... just venting..... Thanks!
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pain-in-the-head
New Board Newbie
I love YaBB 1G - SP1!
Posts: 1
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Re: What kind of people are we???
« Reply #51 on: May 16th, 2004, 8:05am » |
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I do know one thing that we all have incommon...a sense of humor! Some wild posts!
In one of my many books that describe Cluster Headaches is as follows:
-affect 1% of the population
-most sufferers are tall men who smoke and drink a lot
-hazel or blue eyes
-rugged facial features
-coarse-textured, orange-peel-type skin (what does that mean?)
Well, I am a 31 year women with blue eyes and I hope I don't have a rugged face!
All I know is when I get the "cluster", I want to die.
One of the hardest thing is watching people watch me!
If you are not a sufferer then they don't get it! Not their fault! They feel so helpless, which they are!
I have tried everything from frozen peas on my neck to a cold cloth on my forehead and a blowdryer on the top of my head. I have been to the hospital several times as I thought I was for sure going to die! the last time was Friday morning and they gave me an IV drip. He said it may break the cycle...it didnt!
Although illegal, POT is supposed to work to at least mask the pain!
Your fellow sufferer!
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BobG
New Board Hall of Famer
Gender: 
Posts: 5747
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Re: What kind of people are we???
« Reply #52 on: May 16th, 2004, 4:37pm » |
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on May 16th, 2004, 8:05am, pain-in-the-head wrote:I do know one thing that we all have incommon...a sense of humor! Some wild posts!
In one of my many books that describe Cluster Headaches is as follows:
Your book is way out of date. Chuck it out the window.
-affect 1% of the population
Actually it is less than 1%. Closer to .01%
-most sufferers are tall men who smoke and drink a lot
Not true. We come in all shapes and sizes, some smoke, some used to, some never have. Same with drinking.
-hazel or blue eyes
Also not true. We have the most beautiful eyes of all colors.
-rugged facial features
Nope. Maybe some do but it would be rare.
-coarse-textured, orange-peel-type skin (what does that mean?)
Nope again. We just have normal skin.
Well, I am a 31 year women with blue eyes and I hope I don't have a rugged face!
You don't. You look very pretty and not a day over 21.
All I know is when I get the "cluster", I want to die.
You're not the only one to feel that. But, please don't.
the last time was Friday morning and they gave me an IV drip. He said it may break the cycle...it didnt!
He probably should have given you Imitrex to abort the pain and then started a preventative program.
Although illegal, POT is supposed to work to at least mask the pain!
Pot WILL NOT help with cluster pain. It will most likely make it worse. And if you get arrested you'll have you cluster attacks in jail. That's not a good situation to be in.
Welcome to the board. Tell us some more about you. |
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Stay stressed. Never relax. Never sleep. Ever.
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mynm156
New Board Hall of Famer
hope life isn't a big joke, because I don't get it
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Posts: 1708
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Re: What kind of people are we???
« Reply #53 on: May 16th, 2004, 4:59pm » |
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Im a really nice guy until the BEAST comes a knocking!! Then I kind of turn into this venom spiting, lasers from my eyes kind of get the fuck out of my way between me and the medicine cabinet. Oh and my wife has learned that if I am on the floor bashing my brain into little pieces that it probably not a goodtime to say ANYTHING.
GOOD VIBES ALL
MYNM156
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"Half of the modern drugs could well be thrown out of the window, except that the birds might eat them."
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Wendy1
New Board Veteran
Posts: 154
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Re: What kind of people are we???
« Reply #54 on: May 17th, 2004, 10:44pm » |
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I was once called a 'Brave Person' from an ER doc. It was nice to actually have a medical person acknowledge our pain, however, I cried....
I don't want to be a 'Brave' person... I don't want to have Clusters. I don't feel brave. I feel helpless, weak, frustrated with Clusters.
I have to vent because I think I feel a cycle coming on and I turn into this ugly, mean person..... that has a hard time dealing with life knowing that this beast who controls my every move is looming.....
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