Moderately Severe Chronic Insomnia

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I haven't been able to find any useful information about autistic adults dealing with chronic insomnia.

So has anyone here dealt with this, and how do you manage it? I want parents of autistic kids to answer as well.

My problem is that I cannot fall asleep before 2 AM or so no matter how sleepy I am, but I automatically wake up around 7 AM every morning and cannot fall back asleep, so I never get a full night of sleep.

I've been on several sleep medications including melatonin, but they do not put me to sleep without terrible side effects. If I lower the dose, they don't work. This has been going on for a long time.

I struggle with this, I have no successful advice to give but don't become dependent upon diphenhydramine no matter what.

Diphenhydramine is not that bad, benzos are much more dangerous because they build tolerance and dependency.

I use small doses of quetiapine (Ketrel) to regulate my sleep. Without it, I'd be long insane from sleep deprivation (that actually happened a few years ago before I started taking meds). The dose is constant over time and works well (no tolerance building effect).

Some people find the supplement GABA helpful.

I had severe insomnia that began when my first child was born and has never really gone away, although some times are better than others. Right now, I am in general sleeping pretty well.

Getting into the habit of regular exercise and meditation help over the long haul for me. Don't expect it to work after a day or two or even several months.

Diphenhydramine makes me manic and prevents sleep.

I found the following medications helpful at various times:

elavil, a very low dose say 10 or 20 mg. This is a very old antidepressant and very cheap.
trazodone, another old antidepressant that has a side effect of drowsiness.
gabapentin does have a side effect of drowsiness, but in the US now it is a controlled substance.

If you do take any meds for drowsiness, take them about 45 minutes before you plan to go to bed. That way, the meds are working when you lie down instead of taking them just before going to bed and you have to lie there for 45 minutes waiting to fall asleep and in the meantime get all worked up again.

I find settling down the hardest part. What is working for me at the present time is to read in bed until I fall asleep with the book hitting my nose. This prevents my mind from going to its default setting of reviewing all the problems of the day.

Has anybody tried lots and lots of physical exercise and found it a failure?

I had the same problem for years, spending some time in direct sunlight soon after you wake up really helps to reset the cycle. Avoiding screens and bright lights couple hours before sleep helps a lot as well. All lights in my house are not too bright and have warm color temperature, light in living room is dimmable in addition.

I have two kinds of lights in my work area: "work" - bright and cold top lights and "wind down" - dimmed warm light sources located at lower levels.

The toughest habit to develop is avoiding screens. If you can't at least enable dark mode and "night shift" or whatever this mode called on your device to change color temperature and brightness automatically.

Interesting. I'm too habitually gentle on myself to ever go too far with exercise, though I'm always sick of it by the time it's done. I've not experienced any stress downregulation response or that "dopamine fix" that some people say happens to them, perhaps because my exercising is always so moderate in intensity. So I don't miss what I never had. I usually just feel rather worn out for a while when I'm done, and then gradually drift back to normal, albeit perhaps more able to sleep. By "lots and lots of exercise," I had duration in mind rather than intensity. Just that I sleep like a top after plenty of exercise, so what I'd do is to start with a moderate amount and gradually increase it if it's not enough - of course if it does no good at all then taking it to harmful extremes isn't going to help. I currently only get terminal insomnia (fall asleep OK to begin with but then wake up and can't drop off again), and the loss of sleep usually rights itself in a few days. But exercise is my fallback if that doesn't work out, and (in my case) it's moderately helpful as long as I can bring myself to bother with it.

https://www.spectrumnews.org/features/d ... ith-sleep/

https://pubmed.ncbi.nlm.nih.gov/15705609/

There's a correlation between insomnia or latent onset of sleep, and autism.

I've done extensive sleep lab testing and I didn't know I was autistic at the time, but all my sleep reports match exactly what's stated in this second article (late onset, staying in stages 1 or 2 for too long, not enough REM or restorative Delta wave sleep). Add this to the sensory issues we face on the spectrum and it makes for very poor sleep.

I've been back and forth between two types of prescription sedatives (Imovane / Ambien) for years. I take one every night because otherwise my body can't rest. My sleep study actually proved I don't get any restorative sleep on its own. I wasn't healing physical injuries or waking refreshed - ever.

Personally I've never used sleeping pills, and would only use them as an absolute last resort, though that's not to say other people should never use them. If nothing else works, then there would seem little choice. In my own case my sleep problems are currently bad enough to make me feel ill about one day in every two, and lately I've been getting a very unpleasant sensation where I feel as if I'm about to fall asleep when I'm supposed to be awake, and that feels almost as if I'm going to fall off a cliff, but curiously it rarely happens as long as I can find something to do, something to concentrate on. Caffeine has been known to take the edge off it (though I wouldn't take that anywhere near bedtime for obvious reasons), but it's often resistant to that. Mostly though I feel like I'm catching influenza. And I'm aware that my sleep problems are mild compared with really bad cases.

I organize my life so that I can nap whenever I'm able to, when I need to catch up. Lately, I've been deliberately eating at set times, and that seems to help with regular sleep, too. If I lay down at a regular time, even if I'm not feeling tired that day, I often get sleepy quite soon. Meditation also helps. Sometimes, I'll think I've only been meditating badly, but actually having many short naps.
If my thoughts develop logical gaps, I realize I'm starting to dream. Sometimes, I am startled back awake several times by my hearing cutting out, as it does for sleep. What surprises me is that the "switch" is completely silent, lacking the usual electronic pop.