Julie,
My neurologist was all for me trying that medicine. It was supposed to be for women only. The hormone issue and having seizures. The seizures are worse around that time of the month. So I seriously thought about it. But I was so scared about doing it and my family was too. There was an awful list of side effects on the papers I got with it.They called me and I didn't realize there was so much that was involved with them kind of studies. I backed out on it. I would never agree to nothing like that again.I get worried about trying anything new anyway and have seizures too.Glad you all are here so I can figure out what to do if anything like that ever came up again. Take care.
Tammy
---- Julie Hope <epilepsyhealth@
> Good for you Tammy and Millie
> You sure wouldn't catch me being a gunie-pig for anyone specially if my seizures were even near under control.
> Even the odd breakthrough a person can handle. These meds are just trials that haven't even been approved and
> like they say how do you know if you are getting a placebo. You know when meds are advertized on TV....ever
> figure out what that means....usually a new (or med in this case) starting up needing customers, and needing
> to prove that they are the best. Drs. offices are flooded with salesmen each day with their samples - these
> are the ones we can get for free. The reason we have a hard job getting a decent appointment. Our doctors
> are under pressure from these companies to try their new meds on patients.
> Maybe I am an ol' granny and have had this Epilepsy for centuries now but some of the new names have never
> heard of.:)) Still on the oldies :))smile:))
> Julie
> Julie Hope
> epilepsyhealth@
> http://www.2betrhea
>
> ----- Original Message -----
> From: Uniquepnk@tds.
> To: epilepsy@yahoogroup
> Cc: mylmy@bnin.net
> Sent: Monday, February 23, 2009 8:24 PM
> Subject: Re: [epilepsy] Ep interviews
>
>
> Millie,
>
> About a year ago, my neurologist wanted to be in a study program like that for a medicine that had not been
> approved by the fda yet. The papers I got with it said some people would get the medicine and some would get a
> placebo,you wouldn't know whether you were getting it or not. They wanted me to come every week and have
> bloodwork done and other tests done. That is 3 hours from where I live and I couldn't do all of those trips. I
> don't blame you for not doing it,since your seizures are so well controlled. Mine aren't, but I still wouldn't
> do it. Take care.
>
> Tammy
> ---- mylmy@bnin.net wrote:
> > Hi everybody,
> >
> > Twice I have answered a letter in this group saying I would be
> > willing to be interviewed about EP.
> >
> > For the first one--I was called and they wanted me to get into
> > a group and try a new med. Now why would I want to change meds if I
> > have been controlled for 2 -4 years? I can see that if I was having
> > szs -- I might want to try it. She just couldn't understand why
> > I wouldn't want to do that. I think I finally hung up on her.
> >
> > The second one was just a few months ago. I think Jewl said she
> > was in this. They wanted me to report regually when I take my meds,
> > when I had a sz, how I felt after wards and so on. I started on this
> > one but since I take my meds regually and have no szs-- I decided it
> > was not worth my time.
> >
> > So I wrote and told them why I was cancelling. They sent me a $10 gift
> > certificate for Amazon. I used it to get Suze Orman's 2009 book.
> >
> > Has anybody else had any experiences like this?
> >
> > Millie
> >
>
>
>
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