Narcolepsy Support Group

A sleep disorder (somnipathy) is a disorder in the sleep patterns of a person or animal. Some sleep disorders can interfere with mental and emotional function. If you are having trouble falling asleep or having some other kind of sleep disturbance, this group is for you.

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xyremhappy 05/01/2010

Has anyone done a trial? How was it?

I was called for the one that was posted. The location is in Philadelphia for my area.

deleted_user 05/02/2010

I know someone who had said she was gong to participate. I'll email her and see where she is with it. She'd have to go off xyrem to do..... said that I just didn't believe I could do that, even for the sake of science...i could never work then.

deleted_user 05/02/2010

I wouldn't mind doing a trail but what are the trails for. Sleep medicine or daytime stimulants?

xyremhappy 05/02/2010

this study is at CRIWW

deleted_user 05/03/2010

The trial is for EDS. It's a histamine antagonizer, which basically means it does the opposite of an antihistamine.

I was going to do it, but I'm 90% sure I'm not going to now. I went to meet with them in Dublin, OH, and we went through the consent form, and she let me take it home.

Now that I have a medication that's working (Vyvanse), I don't want to risk it. There is a 2-week washout period for meds other than Nuvigil/Provigil. I have all the info if anyone needs it. Too much to type here.

Basically, it can take up to 175 days. You have to go in every week and get blood drawn among other things. You get paid $1875 (at least here) if you finish it all the way through. It's a double blind study. Half of it is placebo and half is the medication. Multiple PSG and MWT as well.

I know another girl who is in the study, but she doesn't use the internet at all, so...lol. Last time we talked, she wasn't sure she could continue, especially if it turned out that she would be starting placebo (based on her own observations) during the next phase.

deleted_user 05/03/2010

Even though the company is actually based locally, that location is not participating, so I'm out on this one.

It sort of sucks that you can back out at any time, just because of the way it throws off the results. I mean, I completely understand OUR day to day needs, but it's frustrating for the greater good.

More frustrating for me because I'm one the people who, at least when it comes to meds for N, would have no problem coming off my usual stuff and doing whatever they needed for the time period. No job, no kids, wouldn't really matter if I slept through six months or not.

Oh well. I asked them to keep me on the list for anything else.

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