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05-25-2012, 01:44 PM | #1 | ||
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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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05-25-2012, 05:49 PM | #2 | |||
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In Remembrance
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I am about to begin a thread on my experience with creatine monohydrate which seems to have some overlapping effects.
Quote:
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Born in 1953, 1st symptoms and misdiagnosed as essential tremor in 1992. Dx with PD in 2000. Currently (2011) taking 200/50 Sinemet CR 8 times a day + 10/100 Sinemet 3 times a day. Functional 90% of waking day but fragile. Failure at exercise but still trying. Constantly experimenting. Beta blocker and ACE inhibitor at present. Currently (01/2013) taking ldopa/carbadopa 200/50 CR six times a day + 10/100 form 3 times daily. Functional 90% of day. Update 04/2013: L/C 200/50 8x; Beta Blocker; ACE Inhib; Ginger; Turmeric; Creatine; Magnesium; Potassium. Doing well. |
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