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 05/11/2010 09:14
 
xyrem 

This is the area to post questions on xyrem (sodium oxybate). How do you get it? How good is it? Is the postcode lottery still going? Advice and ideas here please.

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 23/11/2010 17:41
 
 Modified By SLEEPY HEAD  on 08/01/2011 15:47:16

Hi John i am a fellow narcoleptic with severe cataplexy.I have been on x-rem for over a year now, I live in Wales and my neurologist applied for funding for me to go to The Burden Centre in Bristol where I was prescribed xyrem. Not a miracle cure but helps significantly with cataplexy.I believe it is only prescribed after other alternatives are tried ie modifinal,ritinol,antidepressants etc, hope this helps! I still continue to use Xyrem although the funding for me to attend Burden Centre has recently been withdrawn.Due to the recent snow it was difficult to get because it is ordered in to chemist and arrives by mail.After two days without it i went in to withdrawl. Cataplexy was so severe i could not stand as muscles were so weak, yet i felt anxious and wanted to get up and run about i could have climbed the walls. I had terrible headaches and was sensitive to noise and light my husband had to look after the children and i shut myself away as i felt so aggitated i didnt know what i was capable of if i could have got up! However on day three i felt much better and for the next week i felt alive again when i was awake i felt much more energetic creative and able to cope with the housework. I hadn't realised how depesonalised the Xyrem had made me. When the cataplexy sleep paralysis hallucinations food cravings and night time insomnia set in i quickly reverted back to sleeping all day and awake all night, it was then i realised without treatment i simply don't fit in to everyone elses idea of norm and decided taking Xyrem is the lesser of two evils.

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 11/01/2011 20:24
 

I live in UK. Have narc and cataplexy. Have been told by users that xyrem is good. Wondered as I have high blood pressure will I even be able to take this drug as it is so high in salt? Had provigil didn't work.

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 12/01/2011 07:49
 

Good question but difficult to answer. Xyrem has a lot of salt in it. Not quite sure how much but another poster suggested it might be as high as 2 grams in every 3 gram dose. If that is the case it's very easy to get to the 100% RDA for salt and with high blood pressure that could be a problem. If your GP is aware of your high BP he will probably suggest a low salt diet while on xyrem. I think the important thing is to talk it through with your medical support team and then they can help you decide what you want to do. I am aware of several members who have high blood pressure and are on xyrem and would ask them to post with any advice they can give.

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 12/01/2011 12:43
 
 Modified By SLEEPY HEAD  on 27/01/2011 23:03:01
Hi Dawnieglossop obviously i am not a medical professional so all i can do is advise you to speak to your neurologist. However i can tell you about my own experiences , my blood pressure has always been naturally very low, so low ive had operations cancelled because the risks of having a general were too high. When i started on provigil my blood pressure was through the roof! i assume because it is a stimulant and speeds everything up.Since ive been on xyrem my blood pressure has returned to normal. As far as i know Xyrem has the opposite effect on the brain.So its worth asking a specialist for their opinion they may have other patients with similar circumstances,increased blood pressure is listed as an uncommon side effect of Xyrem. I should add that so far i can only tollerate a low dose of Xyrem but even a low dose can help improve symptoms of cataplexy, sleep paralysis and hallucinations dramatically,however for me it doesnt stop the excessive daytime sleepiness.Hope this helps.
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