Narcolepsy Forum Posting

Posted by Kara on May 16, 2001 at 15:01:07:

I apologize that I have "responded" several times before I posted anything. I have been on the receiving end of the support for quite a while now. I thank you very much. My Doctor is German, and as you can tell, hopefully, that is not my first language. So, I have listened and learned for several months while going through testing and finally to diagnosis. I have been tested for sleep apnea, and RLS, and, and, and,...but here they seem to do it a little different. I was given the machines to attach to me here at my house, so I never had the problems with "environment". I suppose in that respect, I am lucky. In my nerologists office, I was given what seemed to be a MSLT...Seemingly every twenty minutes for about an hour, I was asked to close my eyes and they shut out the lights and turned on the machine. Beforehand, I was asked to open and close my eyes, I don't know, forty times??? My doctor witnessed a Cataplexic event, so Narcolepsy was an obvious diagnosis for her...what was funny, is I thought my arm weakness was from a fall I had taken two years previously. She said someone can have Narcolepsy and then have a major head trauma which can increase the symptoms. Looking back on my "childhood" I can see all sorts of signs of Narcolepsy, My mom really just thought I was a little ditsy and sometimes uncoordinated. At any rate, I digress...
None of the SSRI's have worked for me and tomorrow I will start Provigil...I do not hold much hope for this either as it dries your throat and mouth extensively...I am a singer, and this would be "Not great"...

I have the opportunity to participate in a sleep study when I fly back to the USA in June. They are testing Xyrem, you all know it, I am sure, GHB. However, I can get it over here before then if the Provigil does not work. My doctor and I would have to experiment with dosage...My positive attitude says I can do it, maybe inside a clinic the first few times, but I could do it. I have just started a new job and a new band...things are looking really rosy...but this means I will have less time here at the house to SLEEP...meaning that I am in need of some sort of Medication. I can go on working from my house, but I want to do more.
So, My questions are...
1) If I take the GHB, can I still take the sleep test in the USA? Does it have a long halflife, or is it really gone after 12 hours?? And what about dosage???
2) Has anyone NOT had the dry mouth with the Provigil, and if not, is there a stimulant that DOES NOT have this side effect??

What do you all think??? I mean, I live a very happy life now...But... there is always the need to conquer...whatever it may be... I have read alot of different opinions on the board, and some very interesting things regarding GHB on the German Internet Sites...It is not totally legal over here, but it is allowed...The only question is dosage...I have heard between 3, 6 and 9 grams...It is available over here in 2.42 ampules, for injections...I understood it was to be taken orally in Orange juice or something. Does anyone have any info I do not??? Thanks for being a great Forum. Sorry I have been "eavesdropping" for so long...

Wish you all Everything Wonderful...
Kara

Follow Ups:

• Re: Do you think this is OK??? Carol 10:46 5/17/01 (2)
  • If I am allowed to ask???... Kara 02:02 5/18/01 (1)
    • To Carol... Kara 13:31 5/18/01 (0)
• Provigil side effects merrill 10:19 5/17/01 (2)
  • Re: Provigil side effects Kara 02:07 5/18/01 (1)
    • Re: Provigil side effects Sigma 05:05 5/18/01 (0)
• Re: Do you think this is OK??? zombiegrl 21:25 5/16/01 (0)

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