Sleep impairment (falling asleep, staying asleep) is arguably one of the most widespread symptoms among all autoimmune illnesses. It’s also that one symptom that I have the least control over. Getting quality sleep can spell the difference between somewhat functional and must feel pulse to make sure I’m alive. Without knowing which tomorrow will be, it’s impossible to commit to any plans ahead of time. Will things get better in the foreseeable future? Maybe.
Enter Suvorexant, the drug you’ll never be able to pronounce without squinting. Why am I excited about it? Well for one it’s not another benzo or SSRI to add to the rotating wheel.
“Suvorexant belongs to a new class of medicines called orexin receptor antagonists which target and block orexins. Approval would make suvorexant the first orexin receptor antagonist to reach the market.” - http://www.nasdaq.com/article/fda-accepts-merck-combo-therapy-nda-analyst-blog-cm204774#.UQiLmx1fATk
Secondly, it actually seems to work on both falling & staying asleep, without the next-day grogginess associated with popular sleep drugs like benzos, trazodone, and benadryl:
“Another billion dollar potential insomnia drug Suvorexant, exhibited strong efficacy in phase III clinical trials in helping insomnia patients fall asleep faster and stay asleep longer. Also, about 90% of the patients didn’t feel sleepy/ fatigued the day after they took the drug, which could bring a difference over other drugs.” - http://www.trefis.com/stock/mrk/articles/160496/reviewing-mercks-volatile-year-and-whats-to-come/2013-01-04
What Works Best Right Now
In the meantime, the show must go on so we do the best we can. The cocktail approach appears to be necessary in many cases. I gathered the following results on sleep medications from www.curetogether.com:
% reporting major improvement
5 diazapam (valium)
Sadly I’ve tried everything on the list and more. What works best for me is Restoril and Benadryl. I find Restoril to be a lot less addictive than other benzos, and it gives me less death-warmed-over feeling the next day. Maybe one or two of these medications don’t do the job for you. Many ME/CFS physicians at least would recommend the “sleep-at-all-costs” approach:
“Dr. Teitelbaum goes further arguing that getting a solid eight to ten hours of restful sleep is worth taking the time and effort to settle on as many as five or six different sleep aids if necessary. Since most of the side effects (and fewer of the benefits) come at higher doses, he believes patients can maximize their benefits by taking small amounts of several sleep aids at once.” - http://phoenixrising.me/treating-cfs-chronic-fatigue-syndrome-me/the-first-symptom-sleep/treating-chronic-fatigue-syndrome-mecfs-and-fibromyalgia-a-prescription-for-sleep
Sleep Away Your Pain
For those that have pain and sleep disorders, first off I apologize on behalf of everyone that does not. Secondly, Xyrem (GHB) might be the best medication for sleep and pain. Large clinical trials have shown that anywhere from 42-60% of patients reported a greater than 30% reduction in pain (2). Along with trazodone, it appears to be one of the very few medications that induce deep stage 3/4 sleep (benzos usually only get into stage 2), so it’s also high on ME/CFS patients’ wanted lists.
Unfortunately it is a tightly-regulated drug only available through Xyrem’s Patient Success Program. It’s also prohibitively expensive at $3,499.80 (4.5g) to $6,999.60 (9g) per month depending on your dosage (1).
Sleep Hormones are Sleep Hormones
With sleep being such a critical function, I’m squarely in the “whatever works, do it” school of thought. I don’t believe in using natural options out of principle. However, the main influencers of sleep are hormonal, and natural options may closely replicate the pharmacology medications without the side effects. For example, Ambien, Lunesta, and Sonata all target GABA receptors. Guess what also targets GABA? GABA. Yes, the amino acid sold OTC. So do Taurine, Magnesium, and L-Theanine (3). My personal savior is melatonin. I pretty much dread the day melatonin becomes regulated or runs out (even more than I fear bacon running out.) 5mg of sublingual melatonin a night has become the one thing that I simply can’t sleep without. Fortunately I haven’t needed to up my dose for years, which I can’t say for any sleep drug ever.
One supplement that’s flown under the radar a bit in our community is Inositol, aka vitamin B8. A friend with anxiety said it was the “missing piece” in her sleep cocktail which got me interested. It has serotonin-boosting properties, so naturally it helps depression (4). Amazingly Dr. Carl Pfeiffer (world-renowned pharmacologist) found out long ago through trials of ten-thousand patients that inositol practically eliminated the need of tranquilizing drugs (5). I then dug up insane amount of anecdotes claiming its the best thing since sliced bread, if bread ever induced deep rejuvenating sleep.