I was recently diagnosed with narcolepsy brought on by a brain injury in an accident. My accident was a year and a half ago. I have taken adderal and nuvigil and other amphetamines none worked well enough. I just tried xyrem for the first time last night. I took one 2.25 dose around 2 at night. I am a college student so I have to have some late nights. I slept well but I couldn't get out of bed until 3 the next day I was so tired??? All day I was extra groggy even more so than usual. Is this normal in the beginning? I am becoming hopeless.
I had the same tiredness, but as far as I know, the drug Xyrem calls for 2 doses, anywhere from 2-1/2 hrs. to 4 hrs. apart, depending how long the first dose affects you, but I was instructed by the Specialty Compounding Pharmacy that is authorized to fill prescriptions and ship it directly to the patient. They explained how it is very important to take at the same time every night, and to set an alarm clock for the 2-1/2 hr point for the 2nd dose. You will adjust to it, I was told that is a common effect when first starting Xyrem. For me, it was approx. 1 week and then that tiredness was gone. It's a pretty potent drug, thus the reason for such a high level of security on any release of it to a patient. It is supposed to get you to that stage 4, restoring sleep, that narcoleptics normally don't get to. When I was started, the doctor increased my dosage every month. Hope this helps. Please don't feel hopeless, you just need to get past the initial symptoms that most drugs cause. Let me know how it goes. I'm very interested and a little surprised at how much you were started at, maybe the doctor can reduce the dose if you tell him what happened, just to be safe. It shouldn't have lasted for 13hrs., it actually has a very short life in your system, thus the need for 2 doses each night.
My tiredness the first month was horrible. If you are on facebook, join a support group there for tons of quick support. If you are absolutely certain about your Narcolepsy diagnosis you can join the Narcolepsy Network group, otherwise join Idiopathic Hypersomnia and look for Dean. That's me.
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