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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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I recently saw an explanation but I don't know if it was on here. They work in different ways though. It's kind of weird. I don't now why doctors don't know these things and why we either have to read about it on here or figure it out for ourselves. They would rather prescribe some pill that doesn't work for us or has terrible side effects.
A hallmark of autoimmunity/immune dysregulation is unrefreshing sleep from all I have seen and experienced. So that is why LDN helps...LDN helps with my sleep. It's about the only thing it does help with but it's worth taking just for that one reason. It makes my sleep more restful.
The new orexin antagonist is promising and great if it helps but does seem like my analogy of taking your foot off the accelerator without the brake to stop.
2015 and what helps so far is Melatonin Sublingual Dr Best or Douglas and Kavinace PM Ultra.
Phenibut in other words, and quite overpriced. But is real phenibut. Cannot be taken everyday and sometimes gives you really bad nightmares and that nullifies the deepness of sleep.
5 mgs seems OK.What dose of melatonin do you take?
I like that analogy! I used to need stronger drugs, but having calmed my nerves through diet and supplements I decelerate more quickly and rarely need one which I refer to as a sledgehammer - but even my sledgehammer drug would probably not be enough for many people here - promethazine - and I only take half a 25mg tablet (a whole tablet knocks me out for about 24 hours).
Usually I only take paracetamol and codeine (I only need the codeine but can't get it on its own), other sedating antihistamines and/or melatonin, taken in rotation to avoid tolerance/dependence.
I still get the 'decelerating' effect, with the drugs gradually helping me to wind down in the evening, then finally get sleepy. Maybe it's the still-overactive brain that is the reason why some drugs take so long to work with me - the milder sedating antihistamines anyway.
5 mgs seems OK.
i still need meds but now i definitely sleep better, maybe because of other treatments for infections etc . But the same combo a few years ago and i would continually wake up every hr or two or maybe get 2hrs one night and 4 the next, all from the same meds and doses now . Im probably less wired and tired , and more tired. Not sure if its a good sign or not.
I dreamed I tried to smother an ex-boyfriend, whom I haven't seen in decades, with a dry cleaning bag. You know how the bags always have warnings? I woke thinking, wow, those bags really are dangerous!
@heapsreal, you had talked about ornithine for sleep on a couple of other threads, so I tried it. It does help.
Unfortunately, I have to take sleep medicine. I'm actually doing pretty well on Belsomra, the new sleep drug that inhibits orexin. I do have some next-morning sedation, but I'm generally feeling more rested than before, so I think it's helping my sleep quality.
Belsomra does cause some people to dream or remember dreams more than before going on the drug. I usually feel better the next day if I dream.
I had a funny one recently. I dreamed I tried to smother an ex-boyfriend, whom I haven't seen in decades, with a dry cleaning bag. You know how the bags always have warnings? I woke thinking, wow, those bags really are dangerous!