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        Supporter's Corner >> Supporter's Corner >> RE: Clinical trial
        
(Message started by: rain on Dec 9^th, 2002, 2:38am)

Title: RE: Clinical trial
Post by rain on Dec 9^th, 2002, 2:38am

Hello ,
I was wondering does anyone know of anyone who did or is doing the CH clinical trial?
Rich finally got to see a neurologist. She was wonderful and really knew CH's. She is Dr. Sylvia Lucas from the Swedish Neuroscience Institute out of Seattle Wa.
She has over 60 patients with CH.
Anyway she talked to us about being part of the trial and well we live pretty far from the hosp. but if it would be worth it we would make the drive.
Of course we understand the med. you take is "extremely painful" (Dr.'s words) it's like snorting red pepper sauce up your nose....but hey when the beast is after you ,you'll try anything that might work !!!
take care everyone....and thanks...Peace

Title: Re: Clinical trial
Post by cootie on Dec 9^th, 2002, 11:17pm

Hi Rain !!!! Good luck if you go thru the clinical trial deal....is that new med a spray type thing ? The nero Brad went to when he first finenally got diagnosed years ago offer'd synthetic cocaine....some sort of spray form I would imagine (duh...like they'd give you a bag of power an'a straw).....he's still doin ok with imitrex and verapimil but it's a struggle with the insurence co. Good luck if you do the trial deal and maybe help find some answers.............. :)