Sleep apnea or UARS and Xyrem

So did you try the Xyrem?

OP died.

That is too bad. I am asssuming that the OP had narcolepsy. It is the only thing that Xyrem can be prescribed for in the USA. It is also one of the most tightly controlled medications in the world. In most of the world there is ONLY ONE pharmacy that it can be legally obtained from, if at all. There are other conditions that could greatly benefit from its use, but the powers that be will not budge.

Narcolepsy can do terrible things to sleep architecture. In some it fragments nocturnal sleep dramatically to the point of turning us into insomniacs that can only sleep for short bursts. Then when you combine other issues such as UARS, hypopnea or OSA it makes managing sleep nearly impossible. No amount of cognitive behavior therapy can change the insomnia either as the brain is incapable of regulating the sleep/wake cycle in the total absence of orexin in someone with severe narcolepsy.

When someone has an total lack of orexin (also known as hypocretin) they constantly fall into REM, sometimes while they are still awake. When they fall asleep they will go straight to REM. If there are underlying respiratory issues they will be worsened while in REM, and the person will wake back up. There is little to no SWS, slow wave sleep, and sleep dept piles up day after day. As the sleep deprivation accumulates the REM symptoms worsen. The immune system eventually is compromised, depression can set in, and a host of comorbid health problems begin present aside from the ones normally associated with OSA.

My condition is not nearly that bad. Without CPAP I sleep 4.5-5 hours before I wake up, and can't sleep anymore. With it I am happy to get 6-7. It doesn't seem like much of a difference, but it is enough of a difference that with the CPAP my Adderall actually works, and I can choose to not take it if I know I have a day that I won't have to drive far. Prior to starting CPAP, and after being forced to switch to Adderall I was barely functional. I drug my way through the day, and if I forgot to take my meds in the morning I would be basically non-functional by lunchtime. I have worn my mask all night, every night, since I got my machine just over a month ago. The only exceptions are the nights that we were camping while traveling, and the four nights we stayed with my wife's aunt who is a heavy smoker. I could barely stand to stay in the house myself. There was no way I was going to unpack my machine, and run it in there. If I had realized that half the camp sites we were going to use were going to have power I would have brought an extension cord, and there would have been even fewer nights without CPAP. I will admit that there is something about sleeping out in a tent that allows me to sleep much more soundly naturally though, and I didn't much miss my machine for those few nights.

It is a shame that the OP did not get the support that was needed in end. Narcoleptics are the fringe population of the sleep disordered. Even though the diagnosed account for 1 in 2000 Americans, and it is a highly under diagnosed syndrome, very few sleep specialists really understand what they are treating when faced with a patient. They will chase the symptoms, and comorbid conditions while ignoring the true underlying causes. It is common to prescribe hypnotic sedatives to narcoleptics that actually increase REM activity, the exact opposite of what is needed. Then when the patient is sleeping more hours, but is more tired than ever they are treated like drug seekers because they require ever increasing stimulant doses, even though the lack of orexin actually prevents the formation of psychological addictions, or physiological addictions to stimulants. Xyrem is the only medication that actually treats the root cause of the symptoms of narcolepsy. It has been stigmatized because of its use as a "date rape" drug, and its potential for misuse by non-narcoleptics. A true narcoleptic will generally not experience the pleasurable sensations that the recreational user of GHB is after. I has been proven that synthetic orexin can be administered nasal, and completely reverse the cause of narcolepsy, but there is less money in it for the pharmaceutical companies, and that avenue has never been pursued even though the studies that have been carried out showed full recovery with no side effects. It would even be a drug they would be able to sell the narcoleptic for life. Only stem cell regrowth of the lost cells in the hypothalamus can ever truly end a narcoleptic's suffering, and there is no guarantee that it would ever be permanent. Narcolepsy is an autoimmune disorder where the body attacks a small, and very specific portion of the hypothalamus. Approximately 500,000 cells that cannot regrow themselves, and that have not back up. There is a small amount of orexin made in the digestive system that is part of the hunger/eating complex, but it is insufficient. This is another reason why narcoleptics tend to be overweight. Not only is our sleeping/healing system out of whack, but so is our hunger/feeding system.

Xyrem can be prescribed off-label.