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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Sleep Disorders
/ Narcolepsy Support Group

xyrem. not working

Deadredsister
Deadredsister

 Hi. I am a 55 yo female,recently diagnosed w/narcolepsy after more than 4 decades of extreme sleepiness. My sleep doc perscribed xyrem after trying a multitude of meds that didn't work on me. I have been on 4.5g twice a night for about a month and a half,but still can't fall asleep on first dose. I also take 1 mg of clonopin,10mg of flexeril and 10mg of soma along with xyrem.wondering if anyone else has dealt with this. I'm  so bummmed out and scared. What if it doesnt work? Im so far beyond exhausted........

IamMissingMyself
IamMissingMyself
I read that for some people they have to be careful not to drink too much water at bedtime & not to use more water with Xyrem than required. Also, to wait at least 2 hours after eating. (I have a light snack before taking Xyrem & brushing my teeth because I had a little bit of reflux -I think I was drinking it too fast due to the taste.) You could try no water leading up to bedtime or more time after eating to see if that helps.

The 1st night I took Xyrem led to the 1st morning of my entire life that I felt refreshed in the morning. I said to my husband, "So, this is what it is like for other people to wake up!" That was in July 2014. I was lucky as my doctor said it can take longer for some. I hope you get to have that experience soon!

There are times that I will still have trouble falling asleep after the 1st dose. A few nights ago it was after both doses. So weird but I had a lot on my mind so I guess that was why. I felt horrible the next day!
DreamWarrior
DreamWarrior
I have had Narc and Cataplexy for 25 years now. I actually sourced xyrem off my own research about 8 years ago. The top consultants hadn't even heard of it. Sounds like a familiar story lol. I take xyrem mainly for the relief from cataplexy. So fed up falling over at the least thought wave that isn't normal. I take 3.5 cut down from 5 mg twice nightly and I sleep for as long as the drug is actively putting me in a coma for which is normally 40 mins max and that is as long as I sleep in any one stretch . Lots of mini coma's but nothing that could ever resemble sleep. More like pause on the remote and then carry on just as knackered as I was before I fell asleep. I am now looking in to new drugs as I do not like the way xyrem zombifies your life and taking away any will to interact with life.
BlueMarlin
BlueMarlin
I tried Xyrem w horrid results. I couldn't fall asleep and the longer I was awake the more suicidal I felt. The Dr upped the dosage and after my 2nd dose in the night I couldn't breath, wanted to vomit but couldn't. The hospital knew nothing about Xyrem so decided it was a heart problem. Hundredes of dollars forced to be wasted on heart tests.
Glad it works for some of you! Wish I could experience the feeling of being awake...