Where I'm at in my battle with Narcolepsy and Cataplepxy

I was diagnosed July 2017 with narcolepsy and catalepsy. It is December 2017 and this is where I'm at. I found out about a study for the drug xyrem it involves trips to Florida and seeing a specialist from New Zealand. This study is to try and modify xyrem to once a day verse twice a day. As of right now you have to take it when you go to bed and then wake up in the middle of the night and take it again. It has a very strict sleep schedule you have to maintain so many hours of sleep so if you have to get up early that means you have to go to bed early. If you can't maintain the strict sleep schedule many have experienced harsh side effects that don't make the benefits worth it.

If this drug xyrem works for me what will it do? It will change my life, it will regulate my sleep in what I mean as in going into REM sleep and registering it as I entered it. And it will also balance the cataplexy to where I'll have nearly no experience at all.

At this time my doctor wants me to go on Nuvigil which is a knockoff of Ritalin. And as an adult side effects with heart conditions is only a partial stimulant and it helps regulate your awakeness and supposed to last about 6 hours. These drugs are expensive and will run over a hundred grand a year to maintain. Without them you have to force yourself to function and hope that the people you work with our understanding and compassionate.



Narcolepsy with cataplexy is caused by the loss of a chemical in the brain called hypocretin.  
                    What is Hypocretin?
Orexin, also called hypocretin, is a neuropeptide that regulates arousal, wakefulness, and appetite. The most common form of narcolepsy, in which the sufferer briefly loses muscle tone (cataplexy), is caused by a lack of orexin in the brain due to destruction of the cells that produce it.

                    Sleep Oxygen
Everyone's oxygen levels in the blood are lower during sleep, due to a mildly reduced level of breathing. Also, some alveoli drop out of use during sleep. If your waking oxygen saturation is greater than about 94 percent on room air, it is unlikely that your saturation during sleep will fall below 88 percent.