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Topic: The story of a VETERAN CH'er (Read 370 times) |
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UN_SOLVED
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The story of a VETERAN CH'er
« on: Jun 29th, 2004, 12:59am » |
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Click me for my story.
It's at Cluster Headache Help 2004 under "Treatments"
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I'm STILL alive ?
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Superpain
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Re: The story of a VETERAN CH'er
« Reply #1 on: Jun 29th, 2004, 3:38am » |
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Jesus Christo...
Have you tried mushrooms?
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Chris
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E-Double
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Re: The story of a VETERAN CH'er
« Reply #2 on: Jun 29th, 2004, 6:01am » |
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I'm sorry dude!!!!!!
Wow!!
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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don
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Re: The story of a VETERAN CH'er
« Reply #3 on: Jun 29th, 2004, 6:12am » |
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I sincerely hope you consider the Harvard study prior to the Deep Brain Procedure.
I live a stones throw from Harvard. If I can assist with anything, travel arrangements, accomodations for you and/or family, social activities during a stay, as a liason to the hospital, anything..............contact me.
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Kris_in_SJ
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Re: The story of a VETERAN CH'er
« Reply #4 on: Jun 29th, 2004, 4:40pm » |
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Oh wow - I can't even come close to imagining. I'm with Don, though. I'd sure try a shroom study before I let anyone mess with my deep brain. I can sure understand your desperation though.
Sending hugs and good vibes,
Kris
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Lobster
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Re: The story of a VETERAN CH'er
« Reply #5 on: Jun 29th, 2004, 10:35pm » |
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Man Un.... sounds like you have tried everything except Advil. 
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Samantha_Smith
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Re: The story of a VETERAN CH'er
« Reply #6 on: Jul 1st, 2004, 11:39am » |
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Have you tried Botox injections? Those were the only things that really helped me.
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writer
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Re: The story of a VETERAN CH'er
« Reply #7 on: Jul 3rd, 2004, 12:00pm » |
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Good God, what suffering. I had two cluster cycles a year (seven weeks each) for over 30 years, and finally a doc gave me Sansert. It stopped the cluster cycle in its tracks, but my God, the side effects. If you keep taking it, you have to have fairly frequent blood and liver tests, and eventually, taken too long, the stuff can cause fibrosis of the lungs, if not elsewhere.
Somewhere on this site I read that Sansert is no longer made or prescribed, and I don't wonder. The stuff is an extremely close relative of LSD, which is probably why your medics are thinking of giving you LSD.
I developed tiny little rituals which helped me survive all that time--hot brewed coffee in the middle of the night during an attack, for example, and of course, cold on the back of the neck while pacing. Once in a great while (and this is WEIRD, I know) laughing, laughing hard at a joke or whatever would remove the headache instantly, if you can imagine. Also, once in a blue moon, VIOLENT exercise would stopp an attack also.
But they don't occur often enough to be of any great value, I realize.
In my case psychotherapy for childhood sex abuse was the only thing that worked. I have not had a cluster in over five years--although forever my my fingers will remain crossed. Please do not take offense--you may have nothing of the sort in your background, and I surely, surely hope not. You may have no interest whatever in exploring your childhood--most people don't. It's just that occasionally, that's where some answers lie.
Please take no offense. My heart is with you. While I don't go to church, I do talk to God, and your situation will be part of the conversation. Such suffering really should have no place in life.
Know that I admire your great courage and know too that there are hundreds if not thousands of us out here sending thoughts and hopes for a long string of pain-free days and months.
Writer
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pam s
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Re: The story of a VETERAN CH'er
« Reply #8 on: Jul 3rd, 2004, 8:46pm » |
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Michael, hope I am not being too nosey, but in your account you say you have not tried the psyllocibin yet -- I wonder if you have since you wrote that?
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Pam
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Prense
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Re: The story of a VETERAN CH'er
« Reply #9 on: Jul 4th, 2004, 3:18pm » |
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I have yet to try "all" the medications for CH, but I have tried a shitload so far with no results. Trex works just fine though. (most of the time) I'm waiting to do any of these procedures until there is sufficient success on average, then I'll think about it. I've been chronic for over 11 years with the last three years being horrendous. Soon I'll be not using trex either as I'm about to lose my insurance along with my job. Yes, CH took my job too. We'll see what the future brings.
Good luck Michael!
Chris
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UN_SOLVED
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Re: The story of a VETERAN CH'er
« Reply #10 on: Jul 5th, 2004, 9:58pm » |
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Yes...I've tried all the meds (including Sansert twice). I've tried 'off the wall' meds (like Clomid and Cell Cept). I've done the procedures.
I STILL haven't tried the shroom therapy but want to soon. Still needing help with that.
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Thank god for Imitrex.
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pam s
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Re: The story of a VETERAN CH'er
« Reply #11 on: Jul 5th, 2004, 10:59pm » |
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on Jul 5th, 2004, 9:58pm, UN_SOLVED wrote:Yes...I've tried all the meds (including Sansert twice). I've tried 'off the wall' meds (like Clomid and Cell Cept). I've done the procedures.
I STILL haven't tried the shroom therapy but want to soon. Still needing help with that.
Unsolved
Thank god for Imitrex. |
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I'm guessing that being off the trex in prep for the mushrooms would be *somewhat* of a problem. Maybe you could be a guinea pig for taking a not so sub-recreational dose while still on the trex? (Someone I know very well has taken such a dose long ago and as I recall it was pretty good.)
Pam
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Pam
Let's put the fun back in dysfunctional!
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