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-   -   xyrem (https://www.neurotalk.org/parkinson-s-disease/170399-xyrem.html)

lurkingforacure 05-25-2012 01:44 PM

xyrem
 
In a completely chance discussion with a friend, I learned about this drug, used for narcolepsy (my friend is using it for Lyme with great success so far). It has been studied for PD, here's a quote from a Florida PD newsletter:

A trial was just published in Archives of Neurology in October 2008
(vol. 65, Number 10, p 1337) which reviewed a study of sodium
oxybate (Xyrem) as a treatment for excessive daytime sleepiness (EDS)
and fatigue in Parkinson’s disease. In total,38 patients were studied so
this was a small trial,however, those patients receiving sodium oxybate
(Xyrem) showed significant improvement in both EDS and fatigue
compared with controls. This drug is a central nervous system
depressant and is given at bedtime. It currently is FDA approved for
narcolepsy, so PD use would be considered “off label.”

Evil minds use ingredients in this drug for "date rape", so I understand it is very hard to get, as it should be. And it is expensive. But if it helps you stay in the deep sleep states longer, your body makes more growth hormone, more natural dopamine, more cellular repairs get done, you get more rest so you feel better upon waking, etc., etc., and etc.

Has anyone tried this? Lordy knows the mirapex causes daytime sleepiness which you can reduce by splitting doses in half or thirds, but sleep still is not very good at night. It would be wonderful if this could help PWP sleep more than 2-3 hours at a time, what a difference that might make.

reverett123 05-25-2012 05:49 PM

I am about to begin a thread on my experience with creatine monohydrate which seems to have some overlapping effects.

Quote:

Originally Posted by lurkingforacure (Post 883095)
In a completely chance discussion with a friend, I learned about this drug, used for narcolepsy (my friend is using it for Lyme with great success so far). It has been studied for PD, here's a quote from a Florida PD newsletter:

A trial was just published in Archives of Neurology in October 2008
(vol. 65, Number 10, p 1337) which reviewed a study of sodium
oxybate (Xyrem) as a treatment for excessive daytime sleepiness (EDS)
and fatigue in Parkinson’s disease. In total,38 patients were studied so
this was a small trial,however, those patients receiving sodium oxybate
(Xyrem) showed significant improvement in both EDS and fatigue
compared with controls. This drug is a central nervous system
depressant and is given at bedtime. It currently is FDA approved for
narcolepsy, so PD use would be considered “off label.”

Evil minds use ingredients in this drug for "date rape", so I understand it is very hard to get, as it should be. And it is expensive. But if it helps you stay in the deep sleep states longer, your body makes more growth hormone, more natural dopamine, more cellular repairs get done, you get more rest so you feel better upon waking, etc., etc., and etc.

Has anyone tried this? Lordy knows the mirapex causes daytime sleepiness which you can reduce by splitting doses in half or thirds, but sleep still is not very good at night. It would be wonderful if this could help PWP sleep more than 2-3 hours at a time, what a difference that might make.



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