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

deleted_user
deleted_user
Hi all Im new to these boards. I have Narcolepsy and take Concerta 18mg 1 tab per day. It works but I dont sleep well. Also I use a CPAP for sleep apnea which helps alot. I have heard alot off people talking about Xyrem helping them with narcolepsy. The first neurologist I went to to try it shut me down. She said she didnt like the sleep cycle it induced or something. Im like have you seen my sleep cycle or lack there of?? She wanted me to try a bunch of other medicines. So I did and didnt like any of them. The first drug was nortriptyline and the 2nd was lunesta. I get impacient with doctors easily and am about to give up with her. Anyone else had any trouble getting Xyrem prescribed for Narcolepsy? Or any success/failure using the drug?
deleted_user
deleted_user
Hello
I have been taking meds for my narcolepsy since 1998. Starting with Ritalin and then going to provigil. It wasn't until I moved to a different state and changed doctors did I hear about Xyrem. I started taking it in 2005(?), and I don't know what I would do with out it. All of the other meds treat your symptoms, xyrem treats the problem and helps you get the right kind of sleep and I believe that it has helped my quality of life. Not just because I am not as tired, but I believe that my body heals faster and my memory is better. FYI I still take my provigil during the day.
My doctor was a little concerned because I live alone, but since I have a dog she said the dog would be able to wake me with barking if an emergency(fire etc) occured.
deleted_user
deleted_user
Do you have cataplexy? Xyrem is really used to control the cataplexy associated with Narcolepsy. It knocks you out, completely. Your doctor may be concerned, as was mine, because you have sleep apnea, which I also have, about prescribing Xryem.
deleted_user
deleted_user
I also wanted to add try and be patient. I was diagnosed w/Narcolepsy back in 1990. I have had the experience of going through several bad doctors. I understand what you're going through. It wasn't actually until 2003 I found the doctor I have now. I went through alot of different medications also. Hang in there. You'll find the right doctor and the right medication for you.
deleted_user
deleted_user
Thnx for the replies. I do have cataplexy but the stimulants keep it mostly under control. I tend to lose my bones (family term given to me) at times when being tickled. I was diagnosed aroud 1982 and took pemoline for over 20 years up until it was discontinued not long ago. Thankx again.
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