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New Message Board Archives >> 2004 Posts >> New info from MHNI
(Message started by: UN_SOLVED on Jul 26th, 2004, 11:21pm)

Title: New info from MHNI
Post by UN_SOLVED on Jul 26th, 2004, 11:21pm

on 07/25/04 at 16:26:29, don wrote:
Hang tough bud.

They'll get you some help down at the MHNI.

Thats the Mental Health and Nervous Istitute right?

Heard they got ceramic groups in the day room.

What are you gonna do bout dem headaches though.


LOL .. We don't have a ceramic group there yet  ... maybe I should start one ?? Fingerpainting ??

Deep Brain Stimulation.

I've always defended Dr. Rozen / Dr. Saper's position that No one has died from this procedure.
News today says that 1 person has died now. This procedure was done by the "German group" , none has died in the Italian group (approx 12 - 15 patients). [not sure of the exact numbers]

3 new meds for clusters 'coming down the pipeline'.

I'll be trying one of these probably soon as 1 is already being used for another condition. The other 2 meds will be clinical trials at MHNI or Chelsea hospital. More details will be available soon and cluster patients who wish to try this can apply for the trials.

That's all I got for now. Should've had some fingerpaint ready to write down the names of the new meds ! Next time I'll go prepared !

LOL...they haven't helped out much ... but damn they're trying !

Unsolved

Title: Re: New info from MHNI
Post by Kevin_M on Jul 27th, 2004, 12:00am
Mike,

If you find out about any of the clinical trials, will you let me know.  I think I live nearby here in MI.  Let us know about the new med you may be trying.  Hope it adds some PF for you.  

Kevin M

*edit*  how long are you going to be there?

Title: Re: New info from MHNI
Post by UN_SOLVED on Jul 27th, 2004, 2:37am
I was just at MHNI earlier today (actually on the 26th). I'm now back in Indiana.
As soon as I do any of these drugs or hear more about the trials, I'll post about it.
They want me to give the Clomid one more try for 30 days or less (depending on side effects and results). After that, the new drugs will follow.
One of the new drugs is supposed to act just like Imitrex without all the serious heart related problems that can occur with Imitrex. It will tried as an abortive and as a preventative. It sounded very promising. Who knows ?? The Imitrex is going to kill me if I keep using it the way I have to.

Unsolved

Title: Re: New info from MHNI
Post by don on Jul 27th, 2004, 10:06am

Quote:
We don't have a ceramic group there yet  ... maybe I should start one ??


Radical dude, Radical.

(learned that one up at the DNC)

Title: Re: New info from MHNI
Post by Luke63 on Jul 27th, 2004, 10:12am
Whatever happens..I wish the very best for you and your health Michael.  Good Luck!!   Luke

Title: Re: New info from MHNI
Post by Jeepgun on Jul 27th, 2004, 10:25am
Ditto. I wish you all the best, and hopefully, some serious pain-free time. The imitrex replacement drug would be a godsend...



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