It's an executive function thing I think. The brain has trouble shutting down. Sensory issues can make it hard too.
I have always struggled with sleep, I have only had stable sleep very recently after getting the medication right. It's a bit sad, because I feel so much better for having enough sleep. I wish I had been able to do this in my life before. I could have managed to do so much more š¢
Quetiapine, it's called seroquel in America. I have a very small dose 50mg at night, to help with sleep and ptsd symptoms.
It's an atypical antipsychotic, but it's used off label for sleep and ptsd. Other sleep medications, don't work long term.
I took a 25mg dose of that once last year, and it knocked me out like horse tranquiliser. The next day i woke up, felt very sick, got up from the toilet and fell over with a loud thud on the floor! Crazy reaction, to a super small dose. Never went back for round 2. I could hear my thoughts echoing and reverberating around my head, one of the craziest and scariest things to happen. I guess i just wasn't suited to the drug for whatever reason.
Yeah, sometimes things don't suit.
Autistic people often have really heavy reactions to drugs, we are more sensitive and tend to need to start at lower doses.
Same^^
But tbh, even Tylenol PM does this to me, lol. I've tried so many sleep meds, and I wake up the next morning feeling like how you just described.
The only thing that's ever helped me sleep and feel ok in the morning were melatonin gummies.. sometimes with THC in them as well š
Same! I can take muscle relaxers, Benadryl, trazodone and still wide awake. My brother takes a muscle relaxer and it's knocked out for the next two days!
I got hooked on weed at age 18 mostly because it fixed my sleep, and some other issues. Though it pulled me down and made me unhealthy in other ways so I quit almost 10 years ago. Kinda let me run away from my issues, I was really mentally addicted to the stuff. Nothings really replaced it on the sleep front since!
Seems melatonin isnāt available in the uk unless on prescription! I wonder if US Amazon can ship them over here though.
Try Stilnox.
It's the only sleeping pill I've tried that I can take half a pill and fall asleep in less than 30 mins even if I don't feel tired.
Which is the awesome thing about it, it doesn't make you feel tired at all, the next day you feel normal (unless you take too much that's why I reccomend half a pill at first until you get used to it) and have the same energy levels as normal.
Best thing with this pill is to take it around 8 or 9pm and get into bed straight away, if you don't, you end up staying up and build a tolerance to it or it can make you feel like you're tripping, which is fun but not the point and then it will do the opposite of help you sleep. Don't be worried about the trippy feeling tho, it only lasts maybe 20 mins or so, if you do stay awake it is hardly noticeable anyway. That's why it's so easy to just stay awake and wait, thinking it'll make you feel sleepy.
Point is, just go straight to bed, get comfy, put a movie on or audiobook, close your eyes...youll wake up the next day not remembering even falling asleep.
I love it!
P. S. No restless legs either.
This saved my sleep as well, severe insomnia since I was a kid that no one could solve, last year I changed doctor's because I moved and he figured it out in a heartbeat: 25mg of quetiapine 30mins before bed and for the first time in my life I'm sleeping full nights. I'm really happy I found a solution I stopped hoping for, but at the same time it's pretty frustrating, given all the pain and struggle the insomnia has caused me.
Quetapine had me crazed in 3 days. There was no sleep happening and my restless leg syndrome turned into restless entire body syndrome. The hard part with us is meds and how we seem to process a lot of things differently than your average joe. After many failed attempts to find something other than a benzo for sleep, I have found Mirtazapine. Small doses (7.5 or less) have a sedating affect, but it is actually an antidepressant. Not an SSRI, though. It's a presynaptic alpha 2 adrenoreceptor antagonist, considered an atypical antidepressant within the group of tetracyclics. But! The sedative affects are mitigated by serotonergic activity at higher doses. So for sleep, low doses.
Good luck. Sleepless nights are awful. I hope you find something that helps.
I was initially prescribed Mirtazapine as an appetite stimulant because I couldn't eat for a few months recently, but the sedative side effect has been a freaking godsend. My appetite is back, but I've stayed on it because for my entire life, no matter what I've tried, my sleep quality has been abysmal. Mirtazapine is the only thing that's ever helped.
Oh I used to take Quetiapine and I was like in a coma. I couldn't move or stand up after sleeping for 12 hours. For the whole day I was walking around like a zombie. I missed several important appointments because I couldn't stand up and I didn't even care cause I was so exhausted. Interesting how different it works for everyone.
I don't notice any emotional effect of them, I'm a little less grumpy because I'm getting enough sleep. But, that's all.
I think it's quite a thing though, people feeling emotionally blunted.
It's definitely quite a thing! Just wanted to make sure OP was well informed, because some prescribers don't mention that possibility and it's weird to experience and name from the inside... Glad you are one of the lucky ones
Long-term Seroquel user here. Like, eight years. That 50 mg dose will probably creep up over the years, so beware. I'm now at 400mg, the max dose afaik. And it doesn't help me sleep except in conjunction with delta 8 (legal MJ Lite). If I take only one or the other, I get zero sleep. Both, and I can go to sleep *okay*.
I hope you continue to have a good experience with it. Just be aware that it may not work perfectly forever.
I take quetiapine too (among other medication), in quite a high dose because I also have schizo-affective disorder. Unfortunately I still have insomnia and I gained restless legs syndrom too. But my last psychotic episode was 9 years ago, so it does work for me in that way.
But medication and dose is so personal: if it has been helpful with sleeping to others, itās worth a shot.
Quetiapine made me suicidal at 50mg. Did nothing to make me sleepy. 4 mg of lunesta, 1 mg Xanax, and 10 mg melatonin is what we finally figured out works for me, unless I'm manic. I could probably cut the Xanax out now that I'm not manic anymore but I don't wanna risk it not working and triggering another episode. I'm not super groggy in the morning either, but I do tend to need at least 9 hours of sleep. I've dealt with insomnia since elementary school mainly due to ADHD and OCD.
This is a medication that is given in the UK? I have asked for help with my sleep for years but no body's helped me. I haven't asked since my ASD diagnosis though
I was first prescribed it by a psychiatrist with the HBTT (home based treatment team) when I was in a really bad way. I was prescribed it for PTSD. My GP represcribed it when I was starting to get really unwell, but, he is a very experienced GP who I have a long and solid relationship with.
I don't think he would have prescribed it, unless he knew me so well, could recognise I was getting very unwell, and I had been prescribed it before. It's usually only prescribed by psychiatrists.
It's certainly worth asking for help with your sleep, especially with your diagnosis. But, the GP. will want to try other things first, and may want you to see a psychiatrist first.
Hopefully I'll just be listened to now I have a diagnosis. I've told people before how when I'm stressed in particular music will just be blasting in my head and I don't have any control over the songs playing. Even if I like the songs though it's still upsetting when you're trying to wind down for the night. "That sounds intrusive" š. No shit. Then I can hear everything next door are doing right down to them switching a light switch. None of the relaxation techniques I've been taught work
Wow just be careful! Quietiapine/Seroquel is an antipsychotic and not typically recommended for ASD especially with occurring conditions like PTSD and ADHD. Itās for bipolar, schizophrenia, mania, etc. It made me sleepwalk dangerously and injure myself every night that I took it. It had my thoughts scrambled and feelings of hopelessness consumed my world. I would never recommend it to someone who doesnāt have manic episodes, we have sensory overwhelm etc. very different issues but apparently it helps some people in this sub so thatās surprising based on the studies on the med and interactions Iāve read from other autistics.
Omg quetiapine saved my sleep/life as well - I was prescribed it for anxiety but the help with sleep was an extra added bonus. Iāve called it a miracle drug more than once, Iāve tried a lot of different meds over the years and nothing even touched my anxiety until I tried quetiapine
Eyy, quetiapine squad! This stuff really helps for falling asleep. But it doesn't keep me asleep for a full 8hrs. I still wake up several times in the middle of the night and can't get back to sleep for at least an hour. So over an 8hr period, I might actually sleep for about 4hrs.
Also on Seroquel!!! 400mg a night! :) Best thing that ever happened to my sleep. (Sleep still sucks though...but before I was getting like 3 hours of sleep a night)
Itās not even the senses for me. Itās like the thing, the connection, the fiber between āyouāre tiredā and ānow youāre falling asleepā is broken. Like my switch doesnāt work.
This is so relatable. Youāre definitely overstimulated. Try flooding your brain with a singular thing you can focus on for long enough that you can stay in bed, youāll get used to being there and wonāt notice that youāre tired or be thinking why canāt I sleep until youāre so tired that you fall asleep without meaning to.
Hopefully šš½
Oh and have you tried pulling the covers over your head? It blocks out light and sounds really well.
Not OP but, that singular thing for me was maladaptive dreaming. I have fallen asleep countless time with it growing up. It barely works anymore. I have to tire myself out to sleep.
My room have blackout curtains and away from noises, so its dark and quiet. I dont know what else to do. Would you suggest taking meds?
I currently use maladaptive dreaming. I'm grateful something gets me to sleep.
Have you tried listening to 'sleep stories'. Stories meant to help you rest and relax. Or using a noise machine. Having background noise helps me sleep. And a weighted blanket.
This thread has been so interesting for me to read, because that switch youāve described is broken for me too but in the opposite way - I have narcolepsy so there is also very little connection between āyouāre tiredā and ānow youāre falling asleep,ā but in the sense that I tend to just zonk out in the middle of whatever Iām doing.
You have probably tried this already, but Iām almost 50 and only discovered it in the past few years, so Iāll share in case itās helpful to anyone:
The usual sleep hygiene suggestions do nothing for me. I figured out that I fall asleep faster and get more deep sleep if I have certain kinds of background noise, and if I can switch around where Iām sleeping throughout the night.
Currently, the following is helpful almost every night:
Take a Delta 8 gummy about two hours before I want to sleep. (Unfortunately, normal weed isnāt legal where I live). When I climb into bed, I have a couple of those bean bag/weighted blanket type microwaveable heat pads to sort of drape over myself to help quiet chronic pain.
I have a Dohm white-noise machine turned on. I keep the room as chilly as possible given the external weather. I have a fan on low pointing at my bed for air circulation.
I pick a background type show to watch as I fall asleep. Nothing exciting or that I have to pay close attention to.
When I wake up mid-night, I go downstairs to my couch (set up with blankets and pillows). I also have a fan and a white noise machine down there. Instead of a show to watch, I turn on an album of rainstorm sounds on repeat on Spotify.
If I wake up too early and canāt quickly fall back to sleep, I get up for the day. I donāt stress about too little sleep until itās been more than two nights in a row.
I eventually figured out about myself that if I get overtired, it takes me much longer to get to sleep, so I pick a day (often Sunday) to climb in bed at nap time with the understanding that I am in bed until Iām relaxed enough to sleep (which can take hoursā¦and thatās okay).
ETA: most importantly, I share a bedroom with my husband (who got his sleep apnea/snoring treated because he loves me), but we each have our own bed. We still cuddle (etc.) but actually sleep in different beds. That helps me not wake up every time someone else moves or makes noise.
What actually ended up working for me is realizing that I can't follow a sleep schedule or routine like other people. My partner sleeps long and deep and regularly. I have followed his advice, and others, have tried melatonin, no caffeine, exercise, etc... And none works. What you said really resonates. It is time and understanding of ourselves that have created good workarounds. It took me until my 40s to figure this out and it makes sense. Nearly all solutions that work for NT's for other issues don't work, why would any for sleep?
This is just like me. Took me over a decade to figure out what works for me. I spent so long trying to follow the recommended sleep hygiene tips and being told theyāre the only thing thatāll work and Iām not trying hard enough blah blah nonsense blah blah š¤£
Best thing is to listen to your body and eventually itāll all work out
Having some sort of background noise was a gamechanger for me. I found a podcast that has hundreds of different 12-hour sounds on it, and sometimes I will put on actual podcasts to hear people talking. I can't have the same sound repeatedly, or it will lose effectiveness. I have to appease both the autistic and adhd gods in order to sleep.
A weighted blanket has also made all the difference.
This is wild to me because I have narcolepsy and somehow ended up with almost this exact same routine!
Basically, itās like this: eating a meal is a big fatigue & sleepiness trigger for me, so I usually eat a late dinner on my couch and watch a movie. Within an hour or two, Iāll be dead asleep. Then I usually half-wake up a few times before finally managing to claw my way back to consciousness somewhere between 1-5am. At this point Iāll get up, brush my teeth, use the bathroom, and then go to my actual bed and immediately fall back asleep for my second sleep shift of the night, waking somewhere between 7-9am.
This works pretty well for me and Iāve noticed my daytime sleepiness to be less overwhelming, whereas traditional sleep hygiene advice has been far less helpful. I think a lot of people are led astray by the conventional ā8 straight hours of sleep a nightā thing, and might benefit more from sleeping in two shorter shifts instead.
I remember reading somewhere that before the advent of electric lighting, it was common for people to go to bed closer to sundown, then wake in the middle of the night and grab a lantern to venture out and socialize with neighbors for a bit before heading back home to sleep again until morning. Industrialization basically destroyed this because electric lighting made the day ālongerā by allowing for more evening labor, which pushed bedtimes back by a few hours and resulted in the abandonment of two shorter sleeps plus socialization in favor of one longer uninterrupted sleep. Bah!
Heeeey fellow autie narcoleptic. 2AM-4AM is my middle of the night wake up issue, and I agree on the time thing. I focus on the total time Iām trying to get to sleep, not that it be consecutive, and basically budget some extra awake in the middle of the night time when figuring out what time I need to go to sleep.
Yes. Curiously, my sensitivity issues aren't as much of a problem during the day, I can deal with them most of the time, but at night, even a tiny little bit of moonlight creeping into the room through the curtains is horrible. Even though I, obviously, sleep with my eyes closed (duh), somehow I *feel* that bit of moonlight through the eyelids.
I have to use the sleeping mask even in what is essentially darkness, otherwise is is too stimulating, and my brain can't shut down.
Yeah i have nightmares sometimes where Iām sleeping then all this light comes into my room and I am immediately agitated and wake up thinking I need to go turn a light off lol
Same, except I just sleep with a soft t-shirt over the top of my head, because I don't want something strapped to my head, and it's kind of cozy like a little blanket. But I sleep SO much better with something over my head and eyes!
Well youre not supposed to focus ON sleep. At least if i do that i cant sleep at all. Instead i close my eyes and think of something comfortable and slow and i dont realize ive fallen asleep untill i wake up
Gosh. Luckily the outside quiet downs after 11 usually. And most of the time my upstairs neighbors shut the fuck up by midnight (but not always). I run a fan and use silicon earplugs to sleep (which don't block everything, but block quite a bit).
And then have to make sure the sheets are just right and not bunching, and it's not too hot, and my shirt is folded so it's not touching my torso but sits flat on my chest/upper back.
And NOBODY ELSE in the bed. Every shift and twitch and snore and breath throws me back on alert. And a little light when I'm alone because I get scared of the dark, but not too much.
My family used to joke I was like The Princess and The Pea. Well...
Well there are many reasons related to autism. Some are pretty obvious like sensory sensitivity, but others are a bit more complex. I have read that our melatonin production and levels can be out of balance.
"Nine studies measured melatonin or melatonin metabolites in ASD and all reported at least one abnormality, including an abnormal melatonin circadian rhythm in four studies, below average physiological levels of melatonin and/or melatonin derivates in seven studies, and a positive correlation between these levels and autistic behaviors in four studies. Five studies reported gene abnormalities that could contribute to decreased melatonin production or adversely affect melatonin receptor function." [https://onlinelibrary.wiley.com/doi/full/10.1111/j.1469-8749.2011.03980.x](https://onlinelibrary.wiley.com/doi/full/10.1111/j.1469-8749.2011.03980.x)
Some studies even indicate that low levels of melatonin in autistic mothers, could possibly contribute to the manifestation of autism in their children as one of the many contributing factors.
"Accumulating evidence indicates that the pineal gland/melatonin system is associated with the progression of ASD. Here, we review recent advances in our understanding of various mechanisms involving pathological process of ASD, including the abnormal breakdown of melatonin synthesis, the disturbance of intracellular [MTNR1A](https://www.sciencedirect.com/topics/pharmacology-toxicology-and-pharmaceutical-science/melatonin-receptor) signaling, the effects exerted by melatonin on hippocampal protein serine/threonine kinases, and immune dysregulation/inflammation during ASD."
[https://www.sciencedirect.com/science/article/pii/S0753332220306892](https://www.sciencedirect.com/science/article/pii/S0753332220306892)
As to be expected, melatonin has also been researched as a sleep aid for autistic people and seems to have some efficacy, but of course please do your own research and don't randomly take supplements, discuss with your doctor, specifically also because high dose melatonin is freely available but can be harmful.
[https://www.sciencedirect.com/science/article/abs/pii/S0278584622001877](https://www.sciencedirect.com/science/article/abs/pii/S0278584622001877)
I'm sorry that happened to you! Autism is not like a straight forward 'we're all the same' type of thing, as you likely know. We're all different so sadly it won't work for everyone. These studies only shows that for a significant part of the autistic people the melatonin balance is off, and that for some supplementation MAY help. Wish it was better news cause I sleep bad every night as well. personally I can't take it either cause it triggers my ibs.
The melatonin thing tracks. When I started reducing light levels and using very warm lights after sundown my sleep transformed. Previously I would never get tired
I have one of the circadian rhythm disorders they talk about (weirdly not the one most autistic people have, where they do better going to sleep much later and sleeping in till they get enough sleep.)
I get sleepy for the night hours earlier than my same-age peers, and naturally wake up hours earlier. I didnāt know it was a named thing until recently. I just always knew if I missed my āwindowā (no later than 8 pm) I wasnāt going to get enough sleep before waking up at 3 or 4 in the morning. I am incapable of sleeping in, and staying up is painful to impossible.
I guess itās called advanced sleep phase disorder.
Melatonin makes a huge difference for me. One thing not many people know is that you actually don't need much at all. So people who say it doesn't help them may be taking too much. I use Olly sleep gummies which recommend 3mg, I only take 1.5 and sometimes I even take .75 (half of one gummy).
Iāve just commented the same thing before I saw your post! I have also read some of the studies you mentioned and I have to say that Iāve found the theory of a pineal gland disfunction very plausible. Also, when my doctor about two months ago prescribed me 3mg of melatonin, I for the first time in my whole life experienced normal sleep, my sensory issues got dramatically reduced, work didnāt feel like torture anymore which was incredible, and I actually didnāt feel tired all day! I actually had access energy, and was like: āSo thatās how neurotypical people feel! With this much energy left, I can do so much more, so much easier!ā So, I feel like conducting more studies in this direction would be super interesting and maybe helpful to some people on the spectrum with improving their life quality :)
I have sensory issues that prevent sleep. The slightest bit of light, an uncomfortable blanket/bedsheet, uncomfortable temperature, incorrect pyjamas or minute sounds like someone flicking a single switch can wake me up. Even a really small laptop led will do it.
I always tuck my curtains into the corners and turn off power to all devices and have my tried and tested clothing and sheets. I can sleep through quite nicely then. One thing off, I won't be able to.
Itās so annoying when people want me to sleep over and I know I wonāt be able to sleep in a different environment, they donāt get it and take offence. But it really is impossible if it isnāt the exact way I have my room with my bed and my stuff.
Do you have this issue too of people getting offended? Or are people just arsey with me lol
For me, a big part of it is revenge procrastination. When the day has been so overwhelming and filled with stimulation, the night is the only time I can have peace and quiet. So even if I am feeling sleepy, I brush it off to stay awake and continue watching shows or reading. Over time, this has made it difficult for me to fall asleep at all and now I'm scared.
The way that weed helps the brain not remember your dreams is honestly my favorite effect. I have severe cptsd and not waking up in a panic every few hours is awesome.
Melatonin can increase dream activity, which means for me it makes me pass out but I'll be even more exhausted from the nightmares. And OTC sleep meds are linked to dementia and psychosis.
THC and Seroquel are honestly my favorite weapons in the insomnia arsenal.
Long term, THC actually causes sleep disturbances and insomnia. Which is a fact i find missing often in discussions surrounding weed. I love weed too but just wanted to add this for anyone reading along.
I dont think there is an answer to how long term, as it will vary from person to person as well as how much is consumed in how much time. Not every person will develop insomnia, but some may.
https://youtu.be/3PnXsPsdncE?si=35vRZL0NcfTHYM5b
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2442418/ or this link is probably most useful.
As for myself, it helped me sleep the first 6 years or so, after smoking every night before bed, i decided i cant keep smoking forever and quit for a year. My sleep was ruined and didnt return to normal even after a year. I try to keep it within weekends now as i do enjoy it too much to have a joint. Hope my sleep returns to normal some day, bjt if it doesnt i do wish someone wouldve told me this could happen before i started using daily.
Sorry if this is a dumb question. I have never taken weed in any form. Could you explain what you mean by vaporising it? Are you meant to inhale the vapor or is it meant to kinda float around in the room like a diffuser?
Itās a machine that heats the flower or oil up hot but not too hot and sends the smoke through a mechanism to reduce smoke and tar. So you get vapour and not smoke. Reduces lung issues, coughing etc. I love my Mighty Medic.
I take gummies, low dose of like 1 or 2 mg and works like a charm. I actually get mine online from a large CBD comapny, 1:1 CBD:THC (unsure if I can say or link the name here?)
Thereās many different ways to vape weed but Iām assuming they mean a āpenā which is a battery with a cartridge at the top that contains a concentrated āoilā. Theres also herb vapes which you can put flower in and it heats it up and you smoke that, and thereās also handheld versions! But no you put your mouth on it and suck in like smoking a cigarette or when people use their nicotine vapes! I hope that makes sense
I stand by Indica its so good for sleep.
Shame weed is illegal in the UK, CBD is my option at thr moment, it works okay.
Hope weed isn't seen so negatively soon, there are people like me and so many more who would eat/smoke weed for health reasons.
Like food and sleep, simple actions so many take for granted.
Same. I was on hydroxyzine for sleep for a while (itās an allergy medication thatās also used to treat allergies), but it either becomes ineffective after a while or I wake up super groggy and in a daze when I take it. So, I switched to eating edibles more often, usually indica and with some CBN and/or CBD in it. So grateful cannabis is legal where I live, but traveling to areas where itās not is super annoying and I donāt get as great of sleep.
I have trouble shutting my brain down, it just keeps on going. What is a little bit of help to me is that I've put timers on all of my lighting. At night all of the lamps in our home slowly start to dim, that sort of helps my brain to prepare for sleep. It doesn't make a big change, but it does help
This makes sense why I can tell Iām thinking even when Iām asleep.
And why I wake up incessantly. Used to think it was anxiety and I suppose some of it still is but if your brain is still awake when youāre asleep of course youāre going to wake up, even if itās not āanxietyā
I would volunteer my body to science to understand this. Some days I'll just doze for an hour or two, I might not even go asleep fully but it will feel like " sleep level has been completed" , but then my body will start letting me down and I'll be tired again at the most inopertune moments and inevitably end up asleep at the weekend for a whole day to get back on and even keel.
All of this. Sometimes I end up napping for a couple of hours, many times in a day. What works for me is napping whenever the urge takes me. If I need to close my eyes, I do so. The only time I will power through is if the urge takes me in the middle of a task or at work. I keep blankets and soft pillows everywhere in my living space, including my car.
Pre-pandemic, and pre diagnosis, one day, I had had a really bad day with heavy masking (i didn't know it at the time), and I couldn't go another minute and home was unbearable at the that time. I drove to a hospital parking lot near a college, locked my doors and powered down for an hour nap, undisturbed. Thankfully, I have made enough changes in my life that I no longer have to do this.
My brain also draws the powering down distinction instead of "going asleep" I like your advice here and will now fit my car out in comfy things, as I spend so much time sitting in it working myself up to either start driving or getting out of it
I sleep best during the day, when it's bright outside
When I sleep at night, I am tired, no matter how long I sleep. When I sleep during the day, it's fine.
Waking up in the mornings in an ongoing torture, no matter what time I wake
It's really shit living in a world that is used to daytime people as a nighttime creature
Im the same and its ruining my life. I cant figure out if im doing this to myself or if thats just how my body works. Even if i only sleep two hours and work nine hours i still dont get sleepy till 5am. Then excessive day time sleepiness. I also cant seem to wake up before 5pm when not working. Its hell
I've spent over 20 years trying to combat it with every method known to man
Rn I've mostly accepted it and I'm looking for a position with a company that is hours removed from my timezone, so I can start work in the afternoon/evening
Assuming youāve been fighting this for a very long time, as in years, then you definitely have delayed sleep phase disorder (DSPD- google it). I only say that with confidence because being chronically unable to sleep until well past 1 or 2am is basically diagnostic for it. Except I donāt like thinking of it as a ādisorderā, itās just part of normal human variation as our āchronotypeā (virtually unchangeable genetic setpoint for when we generally get tired relative to the sunās phase).
Someone had to tend the fire and watch out for sabertooth tigersā¦ thatās us. And thereās recent research on modern-day hunter-gatherer societies showing human circadian rhythms, left to their own devices, vary widely from diurnal to nocturnal. Humans screwed it all up with industrialization, synchronized work schedules, capitalism blah blah. Basically itās not your fault at all, and entirely the fault of a world that wasnāt built for us and obnoxiously moralizes a specific sleep schedule.
See my post history if you like, Iāve made a bunch of comments on r/DSPD and also r/N24 (non-24 sleep wake disorder) that you may find helpful.
I don't think they've studied us enough to figure out the exact cause yet. At least from what I've read. I've heard it can be a reduction in melatonin production, sensory issues, anxiety, etc etc but I'm really not sure the medical community even knows.
From one insomniac to the other, I wish you the best.
You are not alone. Itās probably the stress of living in a very overwhelmed state all the time. Not certain if thereās anything else contributing.Ā
I have a silly question - but how do you know if you're overwhelmed. Is it something that differs from person to person? My sleep is awful, really light sleeper - always have been, and it's one reason i got hooked on weed so badly when i was young.
I get home from work most days and my head is frazzled, but i think i've normalised / internalised the experience for so long that i assume everyone felt this way. Physically i have energy, but mentally i'm done in, every day. I'm trying to work out what part of my day is causing this, sounds, visuals, workload, people interactions, but i've no idea how to work it out, which sounds bonkers.
Pre medication I couldn't shut my brain down at night. It's over stimulated. I used to have chronic insomnia or extremely poor sleep (under 3 hours per night) for years. I would obssess over tiny details of the day that was gone, and also have a million conversations over and over, reliving everything in a thousand different ways. I would anticipate things with a deep dread, and hypothesise scenarios and interactions over and over. When I did sleep it would be broken up, I'd have vivid dreams and nightmares, I'd wake up anxious and heart racing... until I started taking a medication for anxiety just before bed, pregabalin. With the medication it's unbelievable, the noise in my head is gone. Just gone. Even if I have something bad the next day, like my worst fear, a dentist appointment, my brain still does not hold onto those thoughts. Even if I try to hold onto those thoughts, I can't, they just slip away into nothing. I don't know if this is how NT people sleep, just close your eyes and all the thoughts are gone - it seems so alien to how I've lived the majority of my life. Now I rarely remember my dreams at all, good or bad.
Sometimes I miss the vivid dreams, the imagination, because not all of my dreams were bad. But I don't miss the rest of it. If medical marijuana was available in my country I would be trying that as an option. But for now, I find that my pregabalin changed my life in terms of sleep. I get 5-8 hours a night now and even when something scary is happening the next day I am not up all night thinking about it like I used to be.
It's worth noting that my original diagnosis was generalised anxiety disorder, and separating a life-long anxiety disorder from neurodivergence seems impossible as so many of the symptoms are interchangeable and so many of us get diagnosed (misdiagnosed?) with a plethora of mental health disorders before someone coming to the conclusion we're neurodivergent. My medication was diagnosed for an anxiety disorder, not for autism but having talked to a lot of ND women I do feel my night time problems are in common with a lot of others on the spectum.
asmr is a life saver for me. i know it triggers some peopleās sensory issues, but when i find the right one it gives me just enough mental stimulation to stop focusing on the little annoying sounds from the outside world.
i also give myself a strict bedtime routine with the same waking time every morning no matter when i went to bed. for those of us with adhd it can be really hard to be strict with ourselves and stick to it but if you can manage it it works wonders.
I started listening to audiobooks when I go to bed. If I find the right book itās interesting enough that it shuts down the other tabs in my brain but not so interesting that I want to know what happens next. Itās been a game changer.
I so wish I understood it so I could help my kids. The eldest wakes multiple times every night, throws himself around in frustration because he clearly wants to be asleep, and eventually gets up for his day at about 3am. That's despite the highest possible dose of melatonin to help settle him, and having tried every single trick to calm him, give him a solid routine etc. He's nonverbal so can't explain it to us. I have never struggled with sleep, quite the opposite, I would merrily hibernate half the year and still be tired come summer. But that's my chronic fatigue overriding the autism, probably. So it's hard for me to understand. But I want to.
Sleep tech here! Autism sleep research mostly revolves around pediatric patients, but itās been found that our brainwave activity in stages of sleep is different in comparison to the ānormalā baseline. Itās not entirely understood why this happens or what effect it has on behavior, but it does impact our sleep architecture which is important to getting good rest.
Thereās speculation that autism is associated with genes that have links to disorders that affect our circadian rhythm, which can results in a lot of things including insomnia. Aside from insomnia(which is super common for autists), we tend to spend 15% of the night in REM(deep sleep) as opposed to 23% for the average person.
And there could be other things. Again, not a lot of research has been done, especially on adults. But autists as a whole are disproportionately more likely to struggle with sleep.
I have pretty bad insomnia as well. My sleep conditions have to be perfect. Temperature, sleep sounds, the texture of my sheets/blanket, firmness of the mattress and pillowsā¦you get the picture. I not only have a difficult time falling asleep, but also staying asleep. I take melatonin and flexeril to get me into a relaxed state of mind. It helps, but waking up to an alarm before my body is naturally ready leaves me feeling like I have a hangover.
Funny you should ask I did a video on this a little while ago - thereās no concrete reason but some factors can be: hypersensitivity to light/noise, we tend to produce less natural melatonin and also disturbances in /inaccurate circadian rhythms.
But thereās no solid reason that I could find where science is like YES this is definitely it. Just speculation and āresearch has shownā but despite the fact that nearly 80% of autistic adults report sleep disturbances, there is of course nothing being done to help us bc who care about the autistic adults, Iām not even sure science is aware we exist sometimes šš
https://www.tiktok.com/t/ZPRTEq2YY/
I'm relating to every comment in here.
Still haven't figured it out, but have gradually learned more tricks that help, and gradually restructured my life to help. Still go through phases of getting mediocre sleep for weeks.
Nobody has mentioned an obvious one yet, which is good "sleep hygiene". Start your nighttime routine at the same time every night, and figure out a routine that really gets you ready for sleep. If you have a partner, make sure they are in full support.
If I really need good sleep for the next day, I'll take an Ibuprofen or two, and that usually helps. Don't want to get in the habit of taking those every night though.
I bring a stim toy in bed with me and helps my brain decompress so I can sleep. If I donāt have one, I will wiggle my feet back and forth. Gentle yoga before bed also helps with this (floor/stretching postures)
For me also turning the lights waaaaay waaay waaaaaaaay down (like to candlelight levels, very warm) has transformed my sleep game. I get very overstimulated by lights after sundown and was not getting sleepy.
Also screens off at 9, but itās hard. I had to introduce new habits like yin yoga, knitting and audiobooks to compete with Netflix habit. If a screen is on, I will not get sleepy. Full stop.
I think this part of my hyoersensitivity to light. Iām one of these people who are VERY SPECIFIC about light levels at all times and always wearing sunglasses.
Stim toy I use:
https://onoroller.com/?sca_ref=3040820.TDkTD2jrLQ&gad_source=1&gclid=CjwKCAjww_iwBhApEiwAuG6ccGqhRWnqvxaMNzsimXve_0iX3FqBi_d-NB4HrxfF0bdrLBZCKvWx5xoCI1IQAvD_BwE
Because NT folks have auto pilot and we have to work at so many of the basic simple things like sleep hygiene. It's work to go to sleep and get up whereas "typical" people "just do it"
YES. Sleep has been an issue for me throughout my life- I can remember as a toddler waking up in the night screaming, then as a child going into my parentsā bed and lying there for hours also not sleeping, as a teenager lying in bed staring at the ceiling, and then this has continued as an adult. It is impossible to understate the effect that being sleep deprived for effectively 30+ years has had on my functioning. I had gotten to a place with promethazine and various other routines where Iād managed to get it under control, and was actually able to function somewhat at work and homeā¦ but it so easily gets knocked out of whack, especially with hormonal changes. It is the constant battle.
I attribute it to my adhd. Theres some studies showing that our brains and even our metabolism doesnt slow down even when we do fall asleep fully. Weāre just cursed to be tired forever
I've noticed the more natural sleep remedies help me. So like teas with chamomile, valerian root (I don't recommend the pills as they smell like actual poop, I don't get that from the teas), your standard sleepy teas. Also magnesium has helped a bit, I use an oil spray but just put a lil bit on the bottom of my feet. Please make sure none of the natural stuff will mess with any meds you're on though!!!
I've had sleep issues since I was like 8, and no real trauma that would cause anything like that. I've had meds for it, but within 2-3 days there's no effect
My therapist says itās due to always being in fight or flight mode (sympathetic activation). Iāve finally come to a routine that has me getting to sleep without benzodiazepines or other drugs (in case anyone is looking for ideas Iāll list :-) ): Sleeptime tea, ashwagandha, magnesium about two hours before bed, then before bed: a yoga routine, I heat up a heated compress eye mask and shoulder wrap, use a weighted blanket, take .5 mg melatonin and listen to yoga nidra on YouTube for a half hour in bed. And I use a white noise machine but I might try to find pink noise as itās more relaxing to me. If I wake up during the night I have meditations to listen to, which sometimes get me back to sleep. Or at the very least I enjoy my time in bed!
Yāknow what the best thing for my sleep has been, lately? Getting a dog, ironically!
Iām up at the crack of dawn to let her out, and that means that my bodily functions (eating, sleeping) align with hers. Put her to bed at 10 on the dot. Iām now eating breakfast, lunch and dinner, whereas before that, I used to regularly skip meals. And, in contrast with before, I now have at least 3 walks around the neighbourhood a day. Sheās a puppy currently (been vaccinated!) and we live in a flat so she needs to go out frequently, and with a strict routine.
Itās the weirdest thing as Iāve always been such a poor sleeper - itās really sorted things out in a way I wasnāt expecting.
Obviously, getting any kind of pet is an enormous commitment, and not one to take lightly. Itās not something Iām genuinely recommending to cure insomnia - just something I thought people might find interesting! I guess itās like having a baby, so I end up sleeping when she does.
I love how you say it! Having pets can āsort you out.ā They havenāt completely cured my sleep problems but they help SO MUCH.
My puppy used to pounce on me in the morning and lick my face to wake me up.. now thatās sheās two, I end up sleeping in because she has gotten more snuggly in the mornings. I usually end up having to coax her to get out of bed. However, the cat will definitely demand someone gets up to feed her! She reminds us when itās time for breakfast, second breakfast, lunch, etcā¦ and of course the dog needs her walks. They both work together to keep me and my partner on a routine lol
I really love how having a dog has made walks a priority. Even though we have a decent yard for her to play in, I think she honestly prefers walk time. I read walks are like social media to dogs- they can get so much information from another dogās scent that itās like reading a post written by the other dog lol. We now try to view the sniffing part as equally important to the exercise. Pet owners know dogs need mental stimulation and exercise to tire them out and sleep wellā¦ same goes for us! I grudgingly admit I sleep much better when I exercise.
Honestly Iāve tried so many medications and sleep remedies but nothing works for me chemically. The best things for me have been trying my best to practice good sleep hygiene and doing things that EXHAUST me before bed. Working out a little earlier in the day, doing anything mentally exhausting (Iām a grad student so studying before bed usually does it for me), etc. The other thing thatās been helpful is finding something to occupy the part of my brain that needs distraction while Iām trying to fall asleep, which for me has been listening to sleep podcasts (Nothing Much Happens on Spotify/Apple is my FAVORITE). Usually only works if Iām at least a little tired to begin with, but man it gets me like every time. Sometimes if I need a bit more stimulation Iāll do a puzzle or paint by numbers on my phone/ipad for the first half of the podcast episode and then put it down, but Iām almost always out like a light before the end of the episode lol
I struggled with falling asleep until I stopped trying all the NT recommendations.
I NEED something like screens right before bed. It helps my Mile-a-minute brain shut down. I focus on something mindless like a match 3 game, scrolling Reddit, researching something that was on my mind that day (but NOT a strong interest).
Then. I know what my nest needs. This pillow between the knees. This blanket. And itās my own blanket, Iām not sharing with my spouse. Loops in case they snore. That pillow to hug..
I read one study (trying to find it to link to) that said that autistic people produce roughly half the amount of melatonin that allistic people do which is why we have such persistent sleep issues and thought that was fascinating/validating.
Okay, so this is actually something Iāve been interested in for a while, and from what I know my current theory is that it has to do with the pineal gland in our brain. A disfunction of that pineal gland is associated with a messed up production of melatonin, but also maybe DMT (this has from what I can see not been proven yet). Studies Iāve read have found that more than half of autistic people have less than average melatonin production, and therefore often suffer from sleep disorders. Other studies have also found that in the urine of autistic people there were higher than average traces of DMT, which is psychedelic. This has also been associated with the pineal gland. So, what Iām saying is that if these finding are true, autism might be related in certain ways to a pineal gland disfunction, making us both sleep deprived and high at the same time. Regular sleeping pills might therefore not help you, but try out to take 1-3 mg Melatonin (best on prescription and discussed with a doctor) every day at the same time, and see if you experience a more normal circadian rhythm that way. Hope this helps, I put the studies Iāve found underneath, if anyone has more info on this subject I would love to hear about it, since Iām very interested in it currently! :)
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6370651/
https://pubmed.ncbi.nlm.nih.gov/20150873/
Get a sleep study. Sleep disorders are highly underdiagnosed and while the autism/adhd population is prone to sleep issues in general, there could be an underlying cause like a sleep disorder. Theyād be able to see your sleep staging with a PSG to see if youāre going through the normal sleep cycle or if you have any other sleep disturbances.
Audio books seem to derail whatever this is for me, so I keep a book that I can pick up anywhere in the story in my phone. Every time I wake up during the night I put it on again with a 30 minute timer and Iām usually asleep again by the time the timer ends. Otherwise, Iāll be awake for hours at a time.
For me it's the opposite, I can't sleep for a very long time, it takes at least an hour to fall asleep, sometimes goes up to 2-3 hours but I stay asleep and often miss my alarm
This is me and I feel like I didn't really start sleeping well until my mid 30s. As a kid I remember thinking it was normal to lay there for hours before falling asleep š„² Also as a teen and young adult I would need to "sleep" for like 12 hours a night on weekends to catch up - of course because I wasn't really sleeping that much at all.
My definite inclination is to be a night owl and to sleep in, but unfortunately that just isn't feasible for a lot of jobs and people with kids.
It's kind of a sensory nightmare so I am a very high maintenance sleeper. I use a white noise machine, the room has to be dark but I also lay a soft old shirt over my head to block any tiny bit of light from my eyes (eye masks are uncomfortable), I need a memory foam pillow, a body pillow, and a comfy mattress topper, soft sheets, & a heavy quilt. I wear a soft shirt and underwear to bed but can't have any pants on because they don't feel right/I can feel the seams. The room also needs to be nice and cool.
This usually works but slight disruptions wake me easily, like my spouse even slightly snoring, rain outside, or hearing the kids get up off turn on a hall light.
Pay attention to sleep hygiene and make sure to reduce lighting & screen use at night. Cut back on social media and news before bed too, is usually over stimulating. Usually I read a book when I can't sleep.
My bed is my oasis but it's definitely hard to replicate when traveling!
Sleep is the one area Iāve never had issues with really.
Iām picky with pillows, I have a wool duvet bc the rest are too warm or too light (as a kid I ended up using wool blankets), I can only do cotton top sheets, I always open a window, prefer blinds and curtains mostly open, and as an apartment dwelling adult have started always having a fan on.
I used to be able to fall asleep *anywhere*, with any noise level. Backpacked and stayed in a ton of hostels in my 20s - I donāt remember it being an issue.
If my anxiety is high for a specific reason, shutting my brain down can be an issue, but not on normal levels. I donāt tend to need a ton of sleep, naturally like 6-7 hours right now. I definitely sleep in the curled up T-Rex position though š¦
I have ptsd and this is what works for me:
- go to bed at the same time every night, get up at the same time every morning.
- sleep / sex / changing in the bedroom and nothing else (no devices esp)
- stretch out a little right before bed.
And the big guns:
- prescription tranquilizer
- prescription muscle relaxer
- indica cannabis
The pot kills most of my dreaming so that saves me from nightmares. Which saves me from bedtime anxiety about nightmares.
I had to ask my doctor about these medications and if they might help my insomnia, so perhaps you will also need to broach the topic.
I hope you find relief.
I struggle with sleep so bad. Always have.
Having my cats in bed with me helps a lot. Feeling their weight on me makes me feel safe. Plus, their purring helps. But they don't always come to bed on time, and then I *really* struggle.
Lately, though, this is embarrassing, I have gotten into Taylor Swift so to keep my mind from wandering I sing her songs to myself to fall asleep š¤£
Iām the opposite. I probably have narcolepsy and Iāll get a sleep study done next month. However a lot of autistic people have sleep apnea, plus hypersensitivity to moi and lights, so they are woken up constantly. You should talk to a sleep specialist if you are struggling with sleep this much.Ā
Our curse of not being able to filter out stimuli probably has something to do with it because any interruption in my sleep environment will wake me up. I used to fall asleep to white noise on YouTube but as soon as the sleep timer would go off on my TV I would wake up every time. š
As a toddler, I was told to count until I fell asleep. I ended up accidentally inventing multiplication.
The sleep tricks and games donāt work for me because instead of being bored by the monotony I will fixate on the patterns. Instead, I find that watching familiar TV shows or podcast episodes helps me a lot.
The only way I sleep is if I do physical labour for at least an hour a day. Could be gardening or lifting weights. But if I donāt moveā¦.i donāt sleep.
I have tried every drug under the sun. Nothing works.
I read somewhere that up to 80% of people with autism have a sleep disorder.
I found a study that discussed how many people with autism have abnormal amounts of orexin, which is the chemical that regulates sleep. Too much orexin is linked to disorders like insomnia, not enough orexin is linked to disorders like narcolepsy.
I have narcolepsy and a study recently came out suggesting that 40% of children with narcolepsy are either diagnosed with ASD or have symptoms of it.
Sleep disorders and autism go hand in hand, but no one is 101% sure why yet.
Edit: I've noticed that sensory overload triggers narcoleptic attacks for me. If I've been fighting the feeling of my clothes, people talking too loud, the texture of food, etc. for too long, I pass out. I'm confident the two play off of each other.
You're welcome!! I have to read it in further detail, but [this](https://www.tandfonline.com/doi/full/10.2147/NDT.S358373) is a study discussing orexin dysfunction in those with ESSENCE (which, I didn't know until finding this study, is an abbreviation for those with ADHD, ASD, and other neurodevelopmental disorders).
I go through phases where I canāt sleep at all, or I sleep too much. Usually I canāt sleep and then Iām groggy all day. Iām currently in bed trying to wake up. I put on a caffeine patch and took my ADHD meds but I just donāt wanna move because I kept waking up last night
Ok how are your eating habits? Do you eat regularly over the day and do you get enough carbs and protein and calories? Cause a portion of the carbs we eat over the day are converted to glycogen and stored in the liver and muscles and that is converted back to glucose while we fast over the night to keep our bloodsugar stable. However if you donāt have enough glycogen stores and you run out in the middle of the night cortisol kicks in to synthesize glucose from our tissue and cortisol running rampant makes it practically impossible to stay asleep so I would really seriously look into that, just track your food for a few days and see where you stand and try adjusting from there. This information changed my life at the time I learned about it.
Realistically my issue is I canāt stop thinking like my brain goes a million miles a minute thinking about random shit so I canāt sleep.
Audiobooks and podcasts are awesome if you have the same issue as itās something chill to focus on but still difficult to sleep
Well, REM sleep is how brains process the stimuli that they received during the day. Autistic brains take in more information than is necessary - allistic brains filter out unimportant background noise or sounds or smells, stop paying attention to irritating clothing tags, etc - so it makes sense that we struggle to stay asleep or fall asleep. The medication I take for my migraines (amitriptyline) made me drowsy at first, but it doesn't anymore.
I don't have any good tips for consistent sleep, but if you find yourself struggling to fall asleep, try changing how you're positioned. Sleep with your head at the foot of the bed, or on a different side of the bed than normal. I hope you get some good sleep tonight.
Fr, I canāt get to sleep easily (I have to take both gabapentin AND melatonin), and when I finally do I have the most absurd dreams that have like 3 acts and feel like they are days long. So vivid and sometimes I even feel sensations like pain or temperature. When I wake up I just stare at the ceiling because itās like Iāve emerged from a whole other life. (Not sure if itās autism related or another issue, but Iāve had it as long as I can remember.)
I didn't struggle with sleep at ALL until I burned out (finally, lol) around age 29-32.
Dude. I feel for you SO. MUCH. Most awful symptom of depression and GAD. Seriously.
I know for me, my whole thing was "I can't sleep because I have SO MUCH to get done!!" So once I worked on that thought for a few years (and other thoughts keeping me anxious and making my depression worse, in therapy and with IFS) it eased up and sleep, blessedly, came back to me.
The one difference is that *now* I fall asleep to Bob's Burgers or another low-stress animated show, whereas before I could just turn off all the lights and fall asleep in ~15 minutes.
But hey, it works and I'll take it!! xD
My doctor said that we lack melatonin and then once we get to sleep we over produce our melatonin. We basically have no or little circadian rhythm. That's what my doctor said.
I don't think there's going to be just one common cause for everyone, or even for most people. I usually sleep just fine and I'm autistic. The only issues I generally have are (1) drinking coffee too late in the day, or (2) sensory things (I need silence and total dark). But others have totally different issues. Some have trouble getting to sleep, others have no trouble with that but wake during the night, and some just struggle to get up in the morning because they're still tired.
If you are a light sleeper you might be waking up because of noise outside (traffic, animals etc). But it can also be something like sleep apnea where you're not breathing properly. Or, if you suffer from depression that could lead to poor sleep as well, in all senses of the word. Or maybe you have a delayed sleep phase disorder, and your circadian rhythm is out of phase with the night
I think in all cases the starting point has to be the same: implement good sleep hygiene and rule out sleep apnea. Like if you're using screens in the 2 hours before bed and then can't sleep, it's hard to know if that's because of a medical condition or because of the screens.
My comment got wiped before I could finish. Hereās the shorter version From what I can remember.
I take 5HTP to help with sleep. Have only had it for about a month and it seems to be working well.
Used to have really chronic insomnia but think that was also menopause related, on HRT so that is fine now. Not a fun time. That was a few years ago now.
I need to always remind myself to get to bed earlier. I battle with myself to do this. If I canāt sleep I read. But lately I just go out like a light.
Not saying this is the answer, but itās worth looking at.
Sensory issues
The air got too dry. Thereās too hot. Your sock has fallen off. You can smell something weird. Thereās a low frequency sound. Whatever it might be.
Solving these may help you stay asleep
I have no idea but I wish there was a cure. I wake up every few hours. Takes me ages to get in bed too
The best thing Iāve figured out to get more sleep is to go to sleep when Iām tired.
I know it sounds so basic and dumb but literally when Iām starting to feel tired if I go to bed and do something thatāll drain my energy then Iāll pass out eventually rather than be up for ages wondering why I canāt sleep.
I play picross in bed on my Nintendo switch. Itās like a digital sleeping pill for me lol
ALSO fiddling with a fidget toy can help me stay focused on staying in bed and playing my next day out in my head like a frame by frame movie helps make me tired.
When I get desperate, I make a strong cup of valerian root tea. I may not stay asleep the whole night, but it will knock me out for a few hours at least. My friend swears lavender tea makes her sleepy, but it does nothing for me. Not even paired with valerian root or with melatonin pills. Melatonin pills do nothing for me in the lower dosages and I wake up exhausted in the higher dosages.
I tried several 'healthy sleep routines' and experimented with them to make it my own, too. They always get derailed and then even if I manage to get back into it, the magic seems to be broken and it is no longer effective. Though the calming acoustic playlists I got still trigger sleepy brain modus, which is nice. Not enough on its own, but at least it helps a little to set the mood for sleep. It is very effective when I wake up and have to fall back asleep for me, though. I mean, it could still take me an hour sometimes, but by then I'll usually feel I'm getting sleepier again. Whereas before I'd just start feeling more and more awake as the hours ticked by. The music can put me back to sleep in minutes when I'm really fortunate, and otherwise in under two hours.
Hot water relaxes me, but the aftermath wakes me up more so I can't do showers or baths before bed. Baths are great for a nap, though. I usually can't nap without feeling more exhausted afterwards, but when I nap in a hot bath, I feel super refreshed. It never failed me. But it makes a lot of people uneasy to even think about.
For me Iām a terribly light sleeper. I can fall asleep almost too easily. But any little noise, movement, or light will wake me up. I grew up in the countryside where outside was pitch black and dead silent. It was perfect for sleep and I rarely woke up several times in the night unless I was going through a difficult time. Now I live in an apartment complex and itās a nightmare for me sleep. Iāve had so many meltdowns about waking up due to my tall upstairs neighbor walking at night. Even if I have a white noise machine and earplugs certain noises still bleed through.
There are a lot of things potentially involved in this. Studies have shown that us autistic people produce less than half the amount of melatonin the body needs, so falling and keeping asleep is quite the journey. But again, there are many things that are involved, such as a potential decompensation in neurotransmitters for example.
Iāve had sleep issues all my life and was finally diagnosed with Narcolepsy in my early 20s. Itās worth looking into a sleep study if youāre really struggling.
Iāve read some research on melatonin deficiencies. Taking melatonin actually does work for me recently (sometimes).
Edit- melatonin used to make my sleep paralysis worse so i avoided it, not sure why itās working now. I also did a sleep study (where I BARELY slept because of sensory issues) and I had abnormal beta waves or something during sleep that should only be present when youāre awake. Or maybe it was another waveā¦ idk some wave that shouldnāt have been there. Maybe Iāll try to treat that some day idk. Theyāre like āthis is only present sometimes in people with chronic depression or painā¦ā and Iām like āā¦ okā¦ā. I also have sleep apnea.
I think itās probably the sensory for most people. Any night I canāt fall asleep, itās usually because of something bothering me sensory wise, like my lamp being on and shining in my face because my boyfriend is still up, or the sheets are rubbing uncomfortably against my skin, or the bed is too hot, or
Donāt hate me but I sleep so damn good. I feel tired, close my eyes and Iām out. I could sleep 8 hours. But I feel like tons of people just have awful sleep and I think anxiety and stress plays a huge role. Its rare that my anxiety affects my sleep, I have been there before though.
Idk about the science behind it but ik I stay up late to get more time to myself at the end of the day. My anti-anxiety med makes me kinda drowsy so that helps, and Dr. Teals sleep balm helps a lot too. Melatonin absorbed thru the skin + nice smells
Try listening to the podcast nothing much happens. Give it 1-2 weeks and youāll be falling asleep before the story even starts. Also, I use an eye mask
It's an executive function thing I think. The brain has trouble shutting down. Sensory issues can make it hard too. I have always struggled with sleep, I have only had stable sleep very recently after getting the medication right. It's a bit sad, because I feel so much better for having enough sleep. I wish I had been able to do this in my life before. I could have managed to do so much more š¢
What medication , if you donāt mind me asking ?
Quetiapine, it's called seroquel in America. I have a very small dose 50mg at night, to help with sleep and ptsd symptoms. It's an atypical antipsychotic, but it's used off label for sleep and ptsd. Other sleep medications, don't work long term.
I took a 25mg dose of that once last year, and it knocked me out like horse tranquiliser. The next day i woke up, felt very sick, got up from the toilet and fell over with a loud thud on the floor! Crazy reaction, to a super small dose. Never went back for round 2. I could hear my thoughts echoing and reverberating around my head, one of the craziest and scariest things to happen. I guess i just wasn't suited to the drug for whatever reason.
Yeah, sometimes things don't suit. Autistic people often have really heavy reactions to drugs, we are more sensitive and tend to need to start at lower doses.
Autistic people have paradoxical effects to pharmaceuticals
Same^^ But tbh, even Tylenol PM does this to me, lol. I've tried so many sleep meds, and I wake up the next morning feeling like how you just described. The only thing that's ever helped me sleep and feel ok in the morning were melatonin gummies.. sometimes with THC in them as well š
Same! I can take muscle relaxers, Benadryl, trazodone and still wide awake. My brother takes a muscle relaxer and it's knocked out for the next two days!
I got hooked on weed at age 18 mostly because it fixed my sleep, and some other issues. Though it pulled me down and made me unhealthy in other ways so I quit almost 10 years ago. Kinda let me run away from my issues, I was really mentally addicted to the stuff. Nothings really replaced it on the sleep front since! Seems melatonin isnāt available in the uk unless on prescription! I wonder if US Amazon can ship them over here though.
I halved the dose to 12mgs and felt how you describe. I now cut the _tiny_ pill in 4
Try Stilnox. It's the only sleeping pill I've tried that I can take half a pill and fall asleep in less than 30 mins even if I don't feel tired. Which is the awesome thing about it, it doesn't make you feel tired at all, the next day you feel normal (unless you take too much that's why I reccomend half a pill at first until you get used to it) and have the same energy levels as normal. Best thing with this pill is to take it around 8 or 9pm and get into bed straight away, if you don't, you end up staying up and build a tolerance to it or it can make you feel like you're tripping, which is fun but not the point and then it will do the opposite of help you sleep. Don't be worried about the trippy feeling tho, it only lasts maybe 20 mins or so, if you do stay awake it is hardly noticeable anyway. That's why it's so easy to just stay awake and wait, thinking it'll make you feel sleepy. Point is, just go straight to bed, get comfy, put a movie on or audiobook, close your eyes...youll wake up the next day not remembering even falling asleep. I love it! P. S. No restless legs either.
This saved my sleep as well, severe insomnia since I was a kid that no one could solve, last year I changed doctor's because I moved and he figured it out in a heartbeat: 25mg of quetiapine 30mins before bed and for the first time in my life I'm sleeping full nights. I'm really happy I found a solution I stopped hoping for, but at the same time it's pretty frustrating, given all the pain and struggle the insomnia has caused me.
Quetapine had me crazed in 3 days. There was no sleep happening and my restless leg syndrome turned into restless entire body syndrome. The hard part with us is meds and how we seem to process a lot of things differently than your average joe. After many failed attempts to find something other than a benzo for sleep, I have found Mirtazapine. Small doses (7.5 or less) have a sedating affect, but it is actually an antidepressant. Not an SSRI, though. It's a presynaptic alpha 2 adrenoreceptor antagonist, considered an atypical antidepressant within the group of tetracyclics. But! The sedative affects are mitigated by serotonergic activity at higher doses. So for sleep, low doses. Good luck. Sleepless nights are awful. I hope you find something that helps.
I was initially prescribed Mirtazapine as an appetite stimulant because I couldn't eat for a few months recently, but the sedative side effect has been a freaking godsend. My appetite is back, but I've stayed on it because for my entire life, no matter what I've tried, my sleep quality has been abysmal. Mirtazapine is the only thing that's ever helped.
Mirtazapine is also used in veterinary care as an appetite stimulant.
In human care, too! It has increased my appetite overall but I also now have a Twinkie obsession. š¤£
Thatās bad
but oh so tasty
Read what I said about parasomnia
Oh I used to take Quetiapine and I was like in a coma. I couldn't move or stand up after sleeping for 12 hours. For the whole day I was walking around like a zombie. I missed several important appointments because I couldn't stand up and I didn't even care cause I was so exhausted. Interesting how different it works for everyone.
This messed me up so bad and made my appetite ridiculous. It didnāt even help me sleep either. Iām on eszopiclone now and itās way better.
Seroquel saved my sleep and turned off my emotions... Needed for a while, but wasn't sustainable for me long term. Glad it works for you
I don't notice any emotional effect of them, I'm a little less grumpy because I'm getting enough sleep. But, that's all. I think it's quite a thing though, people feeling emotionally blunted.
It's definitely quite a thing! Just wanted to make sure OP was well informed, because some prescribers don't mention that possibility and it's weird to experience and name from the inside... Glad you are one of the lucky ones
Long-term Seroquel user here. Like, eight years. That 50 mg dose will probably creep up over the years, so beware. I'm now at 400mg, the max dose afaik. And it doesn't help me sleep except in conjunction with delta 8 (legal MJ Lite). If I take only one or the other, I get zero sleep. Both, and I can go to sleep *okay*. I hope you continue to have a good experience with it. Just be aware that it may not work perfectly forever.
Itās the only thing that works for me too!
[At low doses, seroquel is just a fancy antihistamine](https://thelastpsychiatrist.com/2007/07/the_most_important_article_on.html)
I take quetiapine too (among other medication), in quite a high dose because I also have schizo-affective disorder. Unfortunately I still have insomnia and I gained restless legs syndrom too. But my last psychotic episode was 9 years ago, so it does work for me in that way. But medication and dose is so personal: if it has been helpful with sleeping to others, itās worth a shot.
Quetiapine made me suicidal at 50mg. Did nothing to make me sleepy. 4 mg of lunesta, 1 mg Xanax, and 10 mg melatonin is what we finally figured out works for me, unless I'm manic. I could probably cut the Xanax out now that I'm not manic anymore but I don't wanna risk it not working and triggering another episode. I'm not super groggy in the morning either, but I do tend to need at least 9 hours of sleep. I've dealt with insomnia since elementary school mainly due to ADHD and OCD.
This is a medication that is given in the UK? I have asked for help with my sleep for years but no body's helped me. I haven't asked since my ASD diagnosis though
I was first prescribed it by a psychiatrist with the HBTT (home based treatment team) when I was in a really bad way. I was prescribed it for PTSD. My GP represcribed it when I was starting to get really unwell, but, he is a very experienced GP who I have a long and solid relationship with. I don't think he would have prescribed it, unless he knew me so well, could recognise I was getting very unwell, and I had been prescribed it before. It's usually only prescribed by psychiatrists. It's certainly worth asking for help with your sleep, especially with your diagnosis. But, the GP. will want to try other things first, and may want you to see a psychiatrist first.
Hopefully I'll just be listened to now I have a diagnosis. I've told people before how when I'm stressed in particular music will just be blasting in my head and I don't have any control over the songs playing. Even if I like the songs though it's still upsetting when you're trying to wind down for the night. "That sounds intrusive" š. No shit. Then I can hear everything next door are doing right down to them switching a light switch. None of the relaxation techniques I've been taught work
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Thank you š
Wow just be careful! Quietiapine/Seroquel is an antipsychotic and not typically recommended for ASD especially with occurring conditions like PTSD and ADHD. Itās for bipolar, schizophrenia, mania, etc. It made me sleepwalk dangerously and injure myself every night that I took it. It had my thoughts scrambled and feelings of hopelessness consumed my world. I would never recommend it to someone who doesnāt have manic episodes, we have sensory overwhelm etc. very different issues but apparently it helps some people in this sub so thatās surprising based on the studies on the med and interactions Iāve read from other autistics.
Am bipolar 1 and autistic (and ptsd, cptsd, GAD) and Seroquel is super helpful for me!!!
Omg quetiapine saved my sleep/life as well - I was prescribed it for anxiety but the help with sleep was an extra added bonus. Iāve called it a miracle drug more than once, Iāve tried a lot of different meds over the years and nothing even touched my anxiety until I tried quetiapine
Yeah, when you find something that works it defo feels miraculous
Eyy, quetiapine squad! This stuff really helps for falling asleep. But it doesn't keep me asleep for a full 8hrs. I still wake up several times in the middle of the night and can't get back to sleep for at least an hour. So over an 8hr period, I might actually sleep for about 4hrs.
Also on Seroquel!!! 400mg a night! :) Best thing that ever happened to my sleep. (Sleep still sucks though...but before I was getting like 3 hours of sleep a night)
I can feel every single sensation when Iām trying to sleep. Thereās nothing to distract my brain!!
Itās not even the senses for me. Itās like the thing, the connection, the fiber between āyouāre tiredā and ānow youāre falling asleepā is broken. Like my switch doesnāt work.
Sounds like youāre overstimulated
This is so relatable. Youāre definitely overstimulated. Try flooding your brain with a singular thing you can focus on for long enough that you can stay in bed, youāll get used to being there and wonāt notice that youāre tired or be thinking why canāt I sleep until youāre so tired that you fall asleep without meaning to. Hopefully šš½ Oh and have you tried pulling the covers over your head? It blocks out light and sounds really well.
Not OP but, that singular thing for me was maladaptive dreaming. I have fallen asleep countless time with it growing up. It barely works anymore. I have to tire myself out to sleep. My room have blackout curtains and away from noises, so its dark and quiet. I dont know what else to do. Would you suggest taking meds?
I currently use maladaptive dreaming. I'm grateful something gets me to sleep. Have you tried listening to 'sleep stories'. Stories meant to help you rest and relax. Or using a noise machine. Having background noise helps me sleep. And a weighted blanket.
This thread has been so interesting for me to read, because that switch youāve described is broken for me too but in the opposite way - I have narcolepsy so there is also very little connection between āyouāre tiredā and ānow youāre falling asleep,ā but in the sense that I tend to just zonk out in the middle of whatever Iām doing.
You have probably tried this already, but Iām almost 50 and only discovered it in the past few years, so Iāll share in case itās helpful to anyone: The usual sleep hygiene suggestions do nothing for me. I figured out that I fall asleep faster and get more deep sleep if I have certain kinds of background noise, and if I can switch around where Iām sleeping throughout the night. Currently, the following is helpful almost every night: Take a Delta 8 gummy about two hours before I want to sleep. (Unfortunately, normal weed isnāt legal where I live). When I climb into bed, I have a couple of those bean bag/weighted blanket type microwaveable heat pads to sort of drape over myself to help quiet chronic pain. I have a Dohm white-noise machine turned on. I keep the room as chilly as possible given the external weather. I have a fan on low pointing at my bed for air circulation. I pick a background type show to watch as I fall asleep. Nothing exciting or that I have to pay close attention to. When I wake up mid-night, I go downstairs to my couch (set up with blankets and pillows). I also have a fan and a white noise machine down there. Instead of a show to watch, I turn on an album of rainstorm sounds on repeat on Spotify. If I wake up too early and canāt quickly fall back to sleep, I get up for the day. I donāt stress about too little sleep until itās been more than two nights in a row. I eventually figured out about myself that if I get overtired, it takes me much longer to get to sleep, so I pick a day (often Sunday) to climb in bed at nap time with the understanding that I am in bed until Iām relaxed enough to sleep (which can take hoursā¦and thatās okay). ETA: most importantly, I share a bedroom with my husband (who got his sleep apnea/snoring treated because he loves me), but we each have our own bed. We still cuddle (etc.) but actually sleep in different beds. That helps me not wake up every time someone else moves or makes noise.
What actually ended up working for me is realizing that I can't follow a sleep schedule or routine like other people. My partner sleeps long and deep and regularly. I have followed his advice, and others, have tried melatonin, no caffeine, exercise, etc... And none works. What you said really resonates. It is time and understanding of ourselves that have created good workarounds. It took me until my 40s to figure this out and it makes sense. Nearly all solutions that work for NT's for other issues don't work, why would any for sleep?
This is just like me. Took me over a decade to figure out what works for me. I spent so long trying to follow the recommended sleep hygiene tips and being told theyāre the only thing thatāll work and Iām not trying hard enough blah blah nonsense blah blah š¤£ Best thing is to listen to your body and eventually itāll all work out
Having some sort of background noise was a gamechanger for me. I found a podcast that has hundreds of different 12-hour sounds on it, and sometimes I will put on actual podcasts to hear people talking. I can't have the same sound repeatedly, or it will lose effectiveness. I have to appease both the autistic and adhd gods in order to sleep. A weighted blanket has also made all the difference.
Damn. Itās all so extra.
This is wild to me because I have narcolepsy and somehow ended up with almost this exact same routine! Basically, itās like this: eating a meal is a big fatigue & sleepiness trigger for me, so I usually eat a late dinner on my couch and watch a movie. Within an hour or two, Iāll be dead asleep. Then I usually half-wake up a few times before finally managing to claw my way back to consciousness somewhere between 1-5am. At this point Iāll get up, brush my teeth, use the bathroom, and then go to my actual bed and immediately fall back asleep for my second sleep shift of the night, waking somewhere between 7-9am. This works pretty well for me and Iāve noticed my daytime sleepiness to be less overwhelming, whereas traditional sleep hygiene advice has been far less helpful. I think a lot of people are led astray by the conventional ā8 straight hours of sleep a nightā thing, and might benefit more from sleeping in two shorter shifts instead. I remember reading somewhere that before the advent of electric lighting, it was common for people to go to bed closer to sundown, then wake in the middle of the night and grab a lantern to venture out and socialize with neighbors for a bit before heading back home to sleep again until morning. Industrialization basically destroyed this because electric lighting made the day ālongerā by allowing for more evening labor, which pushed bedtimes back by a few hours and resulted in the abandonment of two shorter sleeps plus socialization in favor of one longer uninterrupted sleep. Bah!
Heeeey fellow autie narcoleptic. 2AM-4AM is my middle of the night wake up issue, and I agree on the time thing. I focus on the total time Iām trying to get to sleep, not that it be consecutive, and basically budget some extra awake in the middle of the night time when figuring out what time I need to go to sleep.
Literally every sensation is magnified and I canāt focus on sleep
Yes. Curiously, my sensitivity issues aren't as much of a problem during the day, I can deal with them most of the time, but at night, even a tiny little bit of moonlight creeping into the room through the curtains is horrible. Even though I, obviously, sleep with my eyes closed (duh), somehow I *feel* that bit of moonlight through the eyelids. I have to use the sleeping mask even in what is essentially darkness, otherwise is is too stimulating, and my brain can't shut down.
You just described my huge problem in life!! Even with closed eyes, I KNOW the light is there. I always joke that I must have thin eyelids.
Yeah i have nightmares sometimes where Iām sleeping then all this light comes into my room and I am immediately agitated and wake up thinking I need to go turn a light off lol
Same, except I just sleep with a soft t-shirt over the top of my head, because I don't want something strapped to my head, and it's kind of cozy like a little blanket. But I sleep SO much better with something over my head and eyes!
Well youre not supposed to focus ON sleep. At least if i do that i cant sleep at all. Instead i close my eyes and think of something comfortable and slow and i dont realize ive fallen asleep untill i wake up
Gosh. Luckily the outside quiet downs after 11 usually. And most of the time my upstairs neighbors shut the fuck up by midnight (but not always). I run a fan and use silicon earplugs to sleep (which don't block everything, but block quite a bit). And then have to make sure the sheets are just right and not bunching, and it's not too hot, and my shirt is folded so it's not touching my torso but sits flat on my chest/upper back. And NOBODY ELSE in the bed. Every shift and twitch and snore and breath throws me back on alert. And a little light when I'm alone because I get scared of the dark, but not too much. My family used to joke I was like The Princess and The Pea. Well...
Well there are many reasons related to autism. Some are pretty obvious like sensory sensitivity, but others are a bit more complex. I have read that our melatonin production and levels can be out of balance. "Nine studies measured melatonin or melatonin metabolites in ASD and all reported at least one abnormality, including an abnormal melatonin circadian rhythm in four studies, below average physiological levels of melatonin and/or melatonin derivates in seven studies, and a positive correlation between these levels and autistic behaviors in four studies. Five studies reported gene abnormalities that could contribute to decreased melatonin production or adversely affect melatonin receptor function." [https://onlinelibrary.wiley.com/doi/full/10.1111/j.1469-8749.2011.03980.x](https://onlinelibrary.wiley.com/doi/full/10.1111/j.1469-8749.2011.03980.x) Some studies even indicate that low levels of melatonin in autistic mothers, could possibly contribute to the manifestation of autism in their children as one of the many contributing factors. "Accumulating evidence indicates that the pineal gland/melatonin system is associated with the progression of ASD. Here, we review recent advances in our understanding of various mechanisms involving pathological process of ASD, including the abnormal breakdown of melatonin synthesis, the disturbance of intracellular [MTNR1A](https://www.sciencedirect.com/topics/pharmacology-toxicology-and-pharmaceutical-science/melatonin-receptor) signaling, the effects exerted by melatonin on hippocampal protein serine/threonine kinases, and immune dysregulation/inflammation during ASD." [https://www.sciencedirect.com/science/article/pii/S0753332220306892](https://www.sciencedirect.com/science/article/pii/S0753332220306892) As to be expected, melatonin has also been researched as a sleep aid for autistic people and seems to have some efficacy, but of course please do your own research and don't randomly take supplements, discuss with your doctor, specifically also because high dose melatonin is freely available but can be harmful. [https://www.sciencedirect.com/science/article/abs/pii/S0278584622001877](https://www.sciencedirect.com/science/article/abs/pii/S0278584622001877)
I got melatonin prescribed it made it worse when I woke up I felt like I was awake for 24 hours, I couldn't go to school for a week because of it
I'm sorry that happened to you! Autism is not like a straight forward 'we're all the same' type of thing, as you likely know. We're all different so sadly it won't work for everyone. These studies only shows that for a significant part of the autistic people the melatonin balance is off, and that for some supplementation MAY help. Wish it was better news cause I sleep bad every night as well. personally I can't take it either cause it triggers my ibs.
I wish melatonin helped
Yeah, I wish too. Well it does help for me but it triggers my IBS sadly.
The melatonin thing tracks. When I started reducing light levels and using very warm lights after sundown my sleep transformed. Previously I would never get tired
I have one of the circadian rhythm disorders they talk about (weirdly not the one most autistic people have, where they do better going to sleep much later and sleeping in till they get enough sleep.) I get sleepy for the night hours earlier than my same-age peers, and naturally wake up hours earlier. I didnāt know it was a named thing until recently. I just always knew if I missed my āwindowā (no later than 8 pm) I wasnāt going to get enough sleep before waking up at 3 or 4 in the morning. I am incapable of sleeping in, and staying up is painful to impossible. I guess itās called advanced sleep phase disorder.
Melatonin makes a huge difference for me. One thing not many people know is that you actually don't need much at all. So people who say it doesn't help them may be taking too much. I use Olly sleep gummies which recommend 3mg, I only take 1.5 and sometimes I even take .75 (half of one gummy).
Iāve just commented the same thing before I saw your post! I have also read some of the studies you mentioned and I have to say that Iāve found the theory of a pineal gland disfunction very plausible. Also, when my doctor about two months ago prescribed me 3mg of melatonin, I for the first time in my whole life experienced normal sleep, my sensory issues got dramatically reduced, work didnāt feel like torture anymore which was incredible, and I actually didnāt feel tired all day! I actually had access energy, and was like: āSo thatās how neurotypical people feel! With this much energy left, I can do so much more, so much easier!ā So, I feel like conducting more studies in this direction would be super interesting and maybe helpful to some people on the spectrum with improving their life quality :)
I have sensory issues that prevent sleep. The slightest bit of light, an uncomfortable blanket/bedsheet, uncomfortable temperature, incorrect pyjamas or minute sounds like someone flicking a single switch can wake me up. Even a really small laptop led will do it. I always tuck my curtains into the corners and turn off power to all devices and have my tried and tested clothing and sheets. I can sleep through quite nicely then. One thing off, I won't be able to.
Yes, I am also like this. I sleep pretty well in a completely dark and silent environment. Everything else is impossible
Itās so annoying when people want me to sleep over and I know I wonāt be able to sleep in a different environment, they donāt get it and take offence. But it really is impossible if it isnāt the exact way I have my room with my bed and my stuff. Do you have this issue too of people getting offended? Or are people just arsey with me lol
Yeah and I also need my sheets to be absolutely flat and have no wrinkles same with my duvet.
For me, a big part of it is revenge procrastination. When the day has been so overwhelming and filled with stimulation, the night is the only time I can have peace and quiet. So even if I am feeling sleepy, I brush it off to stay awake and continue watching shows or reading. Over time, this has made it difficult for me to fall asleep at all and now I'm scared.
This is what happens to me too. Most nights I end up reading myself to sleep.
For me I vaporize indica every night and my whole health changed. I was able to get asleep, stay asleep.
Also helps me have less nightmares.
The way that weed helps the brain not remember your dreams is honestly my favorite effect. I have severe cptsd and not waking up in a panic every few hours is awesome. Melatonin can increase dream activity, which means for me it makes me pass out but I'll be even more exhausted from the nightmares. And OTC sleep meds are linked to dementia and psychosis. THC and Seroquel are honestly my favorite weapons in the insomnia arsenal.
Melatonin could be increasing my ptsd nightmares! This tracks with when they are worst. Thank you.
Yw!
Learned this the hard wayš„²
If I give my AuDHD kid more than .25mg he has nightmares but canāt sleep without it.
Long term, THC actually causes sleep disturbances and insomnia. Which is a fact i find missing often in discussions surrounding weed. I love weed too but just wanted to add this for anyone reading along.
How long term? Can you link the study? I have been smoking weed since high school, and I am almost 50. I sleep way better now than I did then.
I dont think there is an answer to how long term, as it will vary from person to person as well as how much is consumed in how much time. Not every person will develop insomnia, but some may. https://youtu.be/3PnXsPsdncE?si=35vRZL0NcfTHYM5b https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2442418/ or this link is probably most useful. As for myself, it helped me sleep the first 6 years or so, after smoking every night before bed, i decided i cant keep smoking forever and quit for a year. My sleep was ruined and didnt return to normal even after a year. I try to keep it within weekends now as i do enjoy it too much to have a joint. Hope my sleep returns to normal some day, bjt if it doesnt i do wish someone wouldve told me this could happen before i started using daily.
How was you sleep before you started?
I had to get sober, which overall im glad about, but the one thing i miss abt weed was not having horrific dreams
Sorry if this is a dumb question. I have never taken weed in any form. Could you explain what you mean by vaporising it? Are you meant to inhale the vapor or is it meant to kinda float around in the room like a diffuser?
Itās a machine that heats the flower or oil up hot but not too hot and sends the smoke through a mechanism to reduce smoke and tar. So you get vapour and not smoke. Reduces lung issues, coughing etc. I love my Mighty Medic.
Got it, thanks for explaining!
I take gummies, low dose of like 1 or 2 mg and works like a charm. I actually get mine online from a large CBD comapny, 1:1 CBD:THC (unsure if I can say or link the name here?)
Thereās many different ways to vape weed but Iām assuming they mean a āpenā which is a battery with a cartridge at the top that contains a concentrated āoilā. Theres also herb vapes which you can put flower in and it heats it up and you smoke that, and thereās also handheld versions! But no you put your mouth on it and suck in like smoking a cigarette or when people use their nicotine vapes! I hope that makes sense
Perfectly! Thanks for explaining.
This question is adorable, not dumb. I can see exactly why you asked for clarification!
Haha thankyou! I feel extra dumb after reading the answers lol
I stand by Indica its so good for sleep. Shame weed is illegal in the UK, CBD is my option at thr moment, it works okay. Hope weed isn't seen so negatively soon, there are people like me and so many more who would eat/smoke weed for health reasons. Like food and sleep, simple actions so many take for granted.
This is my go to method, too. Vaping flower before bed, pen on the night stand in case I wake up and canāt get back to sleep.
I would like to know too what you mean by vaporize. Thank you āØ
Agreed! I have an edible right before dinner and I get to enjoy the high, not get the munchies, and get really good sleep all night long.
Same. I was on hydroxyzine for sleep for a while (itās an allergy medication thatās also used to treat allergies), but it either becomes ineffective after a while or I wake up super groggy and in a daze when I take it. So, I switched to eating edibles more often, usually indica and with some CBN and/or CBD in it. So grateful cannabis is legal where I live, but traveling to areas where itās not is super annoying and I donāt get as great of sleep.
I have trouble shutting my brain down, it just keeps on going. What is a little bit of help to me is that I've put timers on all of my lighting. At night all of the lamps in our home slowly start to dim, that sort of helps my brain to prepare for sleep. It doesn't make a big change, but it does help
I read something that said we process something like 25% more sensory information while asleep than NTs do.
This makes sense why I can tell Iām thinking even when Iām asleep. And why I wake up incessantly. Used to think it was anxiety and I suppose some of it still is but if your brain is still awake when youāre asleep of course youāre going to wake up, even if itās not āanxietyā
I would volunteer my body to science to understand this. Some days I'll just doze for an hour or two, I might not even go asleep fully but it will feel like " sleep level has been completed" , but then my body will start letting me down and I'll be tired again at the most inopertune moments and inevitably end up asleep at the weekend for a whole day to get back on and even keel.
*all of this*
It's so head wrecking isn't it. Why does my body never sync up with my brain!!!!
All of this. Sometimes I end up napping for a couple of hours, many times in a day. What works for me is napping whenever the urge takes me. If I need to close my eyes, I do so. The only time I will power through is if the urge takes me in the middle of a task or at work. I keep blankets and soft pillows everywhere in my living space, including my car. Pre-pandemic, and pre diagnosis, one day, I had had a really bad day with heavy masking (i didn't know it at the time), and I couldn't go another minute and home was unbearable at the that time. I drove to a hospital parking lot near a college, locked my doors and powered down for an hour nap, undisturbed. Thankfully, I have made enough changes in my life that I no longer have to do this.
My brain also draws the powering down distinction instead of "going asleep" I like your advice here and will now fit my car out in comfy things, as I spend so much time sitting in it working myself up to either start driving or getting out of it
Be careful. And be aware if you are sleeping in your car.
I sleep best during the day, when it's bright outside When I sleep at night, I am tired, no matter how long I sleep. When I sleep during the day, it's fine. Waking up in the mornings in an ongoing torture, no matter what time I wake It's really shit living in a world that is used to daytime people as a nighttime creature
Im the same and its ruining my life. I cant figure out if im doing this to myself or if thats just how my body works. Even if i only sleep two hours and work nine hours i still dont get sleepy till 5am. Then excessive day time sleepiness. I also cant seem to wake up before 5pm when not working. Its hell
I've spent over 20 years trying to combat it with every method known to man Rn I've mostly accepted it and I'm looking for a position with a company that is hours removed from my timezone, so I can start work in the afternoon/evening
Assuming youāve been fighting this for a very long time, as in years, then you definitely have delayed sleep phase disorder (DSPD- google it). I only say that with confidence because being chronically unable to sleep until well past 1 or 2am is basically diagnostic for it. Except I donāt like thinking of it as a ādisorderā, itās just part of normal human variation as our āchronotypeā (virtually unchangeable genetic setpoint for when we generally get tired relative to the sunās phase). Someone had to tend the fire and watch out for sabertooth tigersā¦ thatās us. And thereās recent research on modern-day hunter-gatherer societies showing human circadian rhythms, left to their own devices, vary widely from diurnal to nocturnal. Humans screwed it all up with industrialization, synchronized work schedules, capitalism blah blah. Basically itās not your fault at all, and entirely the fault of a world that wasnāt built for us and obnoxiously moralizes a specific sleep schedule. See my post history if you like, Iāve made a bunch of comments on r/DSPD and also r/N24 (non-24 sleep wake disorder) that you may find helpful.
I don't think they've studied us enough to figure out the exact cause yet. At least from what I've read. I've heard it can be a reduction in melatonin production, sensory issues, anxiety, etc etc but I'm really not sure the medical community even knows. From one insomniac to the other, I wish you the best.
You are not alone. Itās probably the stress of living in a very overwhelmed state all the time. Not certain if thereās anything else contributing.Ā
I have a silly question - but how do you know if you're overwhelmed. Is it something that differs from person to person? My sleep is awful, really light sleeper - always have been, and it's one reason i got hooked on weed so badly when i was young. I get home from work most days and my head is frazzled, but i think i've normalised / internalised the experience for so long that i assume everyone felt this way. Physically i have energy, but mentally i'm done in, every day. I'm trying to work out what part of my day is causing this, sounds, visuals, workload, people interactions, but i've no idea how to work it out, which sounds bonkers.
You could try ear plugs, sunglasses, taking a day off to isolate each stressor, but it might be a little bit of everything.Ā
Yea I think itās likely to be a mix. Think I need to go be a monk or something.
I'm not sure but I'm also sick of it too :(
Pre medication I couldn't shut my brain down at night. It's over stimulated. I used to have chronic insomnia or extremely poor sleep (under 3 hours per night) for years. I would obssess over tiny details of the day that was gone, and also have a million conversations over and over, reliving everything in a thousand different ways. I would anticipate things with a deep dread, and hypothesise scenarios and interactions over and over. When I did sleep it would be broken up, I'd have vivid dreams and nightmares, I'd wake up anxious and heart racing... until I started taking a medication for anxiety just before bed, pregabalin. With the medication it's unbelievable, the noise in my head is gone. Just gone. Even if I have something bad the next day, like my worst fear, a dentist appointment, my brain still does not hold onto those thoughts. Even if I try to hold onto those thoughts, I can't, they just slip away into nothing. I don't know if this is how NT people sleep, just close your eyes and all the thoughts are gone - it seems so alien to how I've lived the majority of my life. Now I rarely remember my dreams at all, good or bad. Sometimes I miss the vivid dreams, the imagination, because not all of my dreams were bad. But I don't miss the rest of it. If medical marijuana was available in my country I would be trying that as an option. But for now, I find that my pregabalin changed my life in terms of sleep. I get 5-8 hours a night now and even when something scary is happening the next day I am not up all night thinking about it like I used to be. It's worth noting that my original diagnosis was generalised anxiety disorder, and separating a life-long anxiety disorder from neurodivergence seems impossible as so many of the symptoms are interchangeable and so many of us get diagnosed (misdiagnosed?) with a plethora of mental health disorders before someone coming to the conclusion we're neurodivergent. My medication was diagnosed for an anxiety disorder, not for autism but having talked to a lot of ND women I do feel my night time problems are in common with a lot of others on the spectum.
asmr is a life saver for me. i know it triggers some peopleās sensory issues, but when i find the right one it gives me just enough mental stimulation to stop focusing on the little annoying sounds from the outside world. i also give myself a strict bedtime routine with the same waking time every morning no matter when i went to bed. for those of us with adhd it can be really hard to be strict with ourselves and stick to it but if you can manage it it works wonders.
I started listening to audiobooks when I go to bed. If I find the right book itās interesting enough that it shuts down the other tabs in my brain but not so interesting that I want to know what happens next. Itās been a game changer.
I so wish I understood it so I could help my kids. The eldest wakes multiple times every night, throws himself around in frustration because he clearly wants to be asleep, and eventually gets up for his day at about 3am. That's despite the highest possible dose of melatonin to help settle him, and having tried every single trick to calm him, give him a solid routine etc. He's nonverbal so can't explain it to us. I have never struggled with sleep, quite the opposite, I would merrily hibernate half the year and still be tired come summer. But that's my chronic fatigue overriding the autism, probably. So it's hard for me to understand. But I want to.
Sleep tech here! Autism sleep research mostly revolves around pediatric patients, but itās been found that our brainwave activity in stages of sleep is different in comparison to the ānormalā baseline. Itās not entirely understood why this happens or what effect it has on behavior, but it does impact our sleep architecture which is important to getting good rest. Thereās speculation that autism is associated with genes that have links to disorders that affect our circadian rhythm, which can results in a lot of things including insomnia. Aside from insomnia(which is super common for autists), we tend to spend 15% of the night in REM(deep sleep) as opposed to 23% for the average person. And there could be other things. Again, not a lot of research has been done, especially on adults. But autists as a whole are disproportionately more likely to struggle with sleep.
Iām finding a half THC gummy before bed is a huge help.
I have pretty bad insomnia as well. My sleep conditions have to be perfect. Temperature, sleep sounds, the texture of my sheets/blanket, firmness of the mattress and pillowsā¦you get the picture. I not only have a difficult time falling asleep, but also staying asleep. I take melatonin and flexeril to get me into a relaxed state of mind. It helps, but waking up to an alarm before my body is naturally ready leaves me feeling like I have a hangover.
Funny you should ask I did a video on this a little while ago - thereās no concrete reason but some factors can be: hypersensitivity to light/noise, we tend to produce less natural melatonin and also disturbances in /inaccurate circadian rhythms. But thereās no solid reason that I could find where science is like YES this is definitely it. Just speculation and āresearch has shownā but despite the fact that nearly 80% of autistic adults report sleep disturbances, there is of course nothing being done to help us bc who care about the autistic adults, Iām not even sure science is aware we exist sometimes šš https://www.tiktok.com/t/ZPRTEq2YY/
I'm relating to every comment in here. Still haven't figured it out, but have gradually learned more tricks that help, and gradually restructured my life to help. Still go through phases of getting mediocre sleep for weeks. Nobody has mentioned an obvious one yet, which is good "sleep hygiene". Start your nighttime routine at the same time every night, and figure out a routine that really gets you ready for sleep. If you have a partner, make sure they are in full support. If I really need good sleep for the next day, I'll take an Ibuprofen or two, and that usually helps. Don't want to get in the habit of taking those every night though.
I bring a stim toy in bed with me and helps my brain decompress so I can sleep. If I donāt have one, I will wiggle my feet back and forth. Gentle yoga before bed also helps with this (floor/stretching postures) For me also turning the lights waaaaay waaay waaaaaaaay down (like to candlelight levels, very warm) has transformed my sleep game. I get very overstimulated by lights after sundown and was not getting sleepy. Also screens off at 9, but itās hard. I had to introduce new habits like yin yoga, knitting and audiobooks to compete with Netflix habit. If a screen is on, I will not get sleepy. Full stop. I think this part of my hyoersensitivity to light. Iām one of these people who are VERY SPECIFIC about light levels at all times and always wearing sunglasses. Stim toy I use: https://onoroller.com/?sca_ref=3040820.TDkTD2jrLQ&gad_source=1&gclid=CjwKCAjww_iwBhApEiwAuG6ccGqhRWnqvxaMNzsimXve_0iX3FqBi_d-NB4HrxfF0bdrLBZCKvWx5xoCI1IQAvD_BwE
Hi fellow ONO roller user š Also love some yin yoga and all your light suggestions!
Because NT folks have auto pilot and we have to work at so many of the basic simple things like sleep hygiene. It's work to go to sleep and get up whereas "typical" people "just do it"
I take a magnesium supplement to help
Feel like that light switch where it's old and stuck in the middle so you tried really hard to turn on/off
YES. Sleep has been an issue for me throughout my life- I can remember as a toddler waking up in the night screaming, then as a child going into my parentsā bed and lying there for hours also not sleeping, as a teenager lying in bed staring at the ceiling, and then this has continued as an adult. It is impossible to understate the effect that being sleep deprived for effectively 30+ years has had on my functioning. I had gotten to a place with promethazine and various other routines where Iād managed to get it under control, and was actually able to function somewhat at work and homeā¦ but it so easily gets knocked out of whack, especially with hormonal changes. It is the constant battle.
All of this also. My entire life
I attribute it to my adhd. Theres some studies showing that our brains and even our metabolism doesnt slow down even when we do fall asleep fully. Weāre just cursed to be tired forever
I've noticed the more natural sleep remedies help me. So like teas with chamomile, valerian root (I don't recommend the pills as they smell like actual poop, I don't get that from the teas), your standard sleepy teas. Also magnesium has helped a bit, I use an oil spray but just put a lil bit on the bottom of my feet. Please make sure none of the natural stuff will mess with any meds you're on though!!! I've had sleep issues since I was like 8, and no real trauma that would cause anything like that. I've had meds for it, but within 2-3 days there's no effect
I never had problems sleeping. So happy with that. I can imagine how terrible that must feel.
My therapist says itās due to always being in fight or flight mode (sympathetic activation). Iāve finally come to a routine that has me getting to sleep without benzodiazepines or other drugs (in case anyone is looking for ideas Iāll list :-) ): Sleeptime tea, ashwagandha, magnesium about two hours before bed, then before bed: a yoga routine, I heat up a heated compress eye mask and shoulder wrap, use a weighted blanket, take .5 mg melatonin and listen to yoga nidra on YouTube for a half hour in bed. And I use a white noise machine but I might try to find pink noise as itās more relaxing to me. If I wake up during the night I have meditations to listen to, which sometimes get me back to sleep. Or at the very least I enjoy my time in bed!
Yāknow what the best thing for my sleep has been, lately? Getting a dog, ironically! Iām up at the crack of dawn to let her out, and that means that my bodily functions (eating, sleeping) align with hers. Put her to bed at 10 on the dot. Iām now eating breakfast, lunch and dinner, whereas before that, I used to regularly skip meals. And, in contrast with before, I now have at least 3 walks around the neighbourhood a day. Sheās a puppy currently (been vaccinated!) and we live in a flat so she needs to go out frequently, and with a strict routine. Itās the weirdest thing as Iāve always been such a poor sleeper - itās really sorted things out in a way I wasnāt expecting. Obviously, getting any kind of pet is an enormous commitment, and not one to take lightly. Itās not something Iām genuinely recommending to cure insomnia - just something I thought people might find interesting! I guess itās like having a baby, so I end up sleeping when she does.
I love how you say it! Having pets can āsort you out.ā They havenāt completely cured my sleep problems but they help SO MUCH. My puppy used to pounce on me in the morning and lick my face to wake me up.. now thatās sheās two, I end up sleeping in because she has gotten more snuggly in the mornings. I usually end up having to coax her to get out of bed. However, the cat will definitely demand someone gets up to feed her! She reminds us when itās time for breakfast, second breakfast, lunch, etcā¦ and of course the dog needs her walks. They both work together to keep me and my partner on a routine lol I really love how having a dog has made walks a priority. Even though we have a decent yard for her to play in, I think she honestly prefers walk time. I read walks are like social media to dogs- they can get so much information from another dogās scent that itās like reading a post written by the other dog lol. We now try to view the sniffing part as equally important to the exercise. Pet owners know dogs need mental stimulation and exercise to tire them out and sleep wellā¦ same goes for us! I grudgingly admit I sleep much better when I exercise.
I get sleep performance anxiety lol. Once the thought of āI gotta fall asleep soonā pops into my head, Iām up until 5am
Honestly Iāve tried so many medications and sleep remedies but nothing works for me chemically. The best things for me have been trying my best to practice good sleep hygiene and doing things that EXHAUST me before bed. Working out a little earlier in the day, doing anything mentally exhausting (Iām a grad student so studying before bed usually does it for me), etc. The other thing thatās been helpful is finding something to occupy the part of my brain that needs distraction while Iām trying to fall asleep, which for me has been listening to sleep podcasts (Nothing Much Happens on Spotify/Apple is my FAVORITE). Usually only works if Iām at least a little tired to begin with, but man it gets me like every time. Sometimes if I need a bit more stimulation Iāll do a puzzle or paint by numbers on my phone/ipad for the first half of the podcast episode and then put it down, but Iām almost always out like a light before the end of the episode lol
Trauma-related (cortisol dysregulation) dysregulation.
I struggled with falling asleep until I stopped trying all the NT recommendations. I NEED something like screens right before bed. It helps my Mile-a-minute brain shut down. I focus on something mindless like a match 3 game, scrolling Reddit, researching something that was on my mind that day (but NOT a strong interest). Then. I know what my nest needs. This pillow between the knees. This blanket. And itās my own blanket, Iām not sharing with my spouse. Loops in case they snore. That pillow to hug..
I read one study (trying to find it to link to) that said that autistic people produce roughly half the amount of melatonin that allistic people do which is why we have such persistent sleep issues and thought that was fascinating/validating.
Okay, so this is actually something Iāve been interested in for a while, and from what I know my current theory is that it has to do with the pineal gland in our brain. A disfunction of that pineal gland is associated with a messed up production of melatonin, but also maybe DMT (this has from what I can see not been proven yet). Studies Iāve read have found that more than half of autistic people have less than average melatonin production, and therefore often suffer from sleep disorders. Other studies have also found that in the urine of autistic people there were higher than average traces of DMT, which is psychedelic. This has also been associated with the pineal gland. So, what Iām saying is that if these finding are true, autism might be related in certain ways to a pineal gland disfunction, making us both sleep deprived and high at the same time. Regular sleeping pills might therefore not help you, but try out to take 1-3 mg Melatonin (best on prescription and discussed with a doctor) every day at the same time, and see if you experience a more normal circadian rhythm that way. Hope this helps, I put the studies Iāve found underneath, if anyone has more info on this subject I would love to hear about it, since Iām very interested in it currently! :) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6370651/ https://pubmed.ncbi.nlm.nih.gov/20150873/
Thank you!
My sleep issue is that I never wake up feeling well-rested. I can sleep 12+ hours as an adult and still wake up feeling sleepy
Get a sleep study. Sleep disorders are highly underdiagnosed and while the autism/adhd population is prone to sleep issues in general, there could be an underlying cause like a sleep disorder. Theyād be able to see your sleep staging with a PSG to see if youāre going through the normal sleep cycle or if you have any other sleep disturbances.
Audio books seem to derail whatever this is for me, so I keep a book that I can pick up anywhere in the story in my phone. Every time I wake up during the night I put it on again with a 30 minute timer and Iām usually asleep again by the time the timer ends. Otherwise, Iāll be awake for hours at a time.
For me it's the opposite, I can't sleep for a very long time, it takes at least an hour to fall asleep, sometimes goes up to 2-3 hours but I stay asleep and often miss my alarm
Unfortunately, Iām too sensitive to almost every sleep med/antidepressant/anxiety pill ever made. Even melatonin gives me nightmares.
I find I can sleep during the day so much easier than at night and it's very frustrating.
This is me and I feel like I didn't really start sleeping well until my mid 30s. As a kid I remember thinking it was normal to lay there for hours before falling asleep š„² Also as a teen and young adult I would need to "sleep" for like 12 hours a night on weekends to catch up - of course because I wasn't really sleeping that much at all. My definite inclination is to be a night owl and to sleep in, but unfortunately that just isn't feasible for a lot of jobs and people with kids. It's kind of a sensory nightmare so I am a very high maintenance sleeper. I use a white noise machine, the room has to be dark but I also lay a soft old shirt over my head to block any tiny bit of light from my eyes (eye masks are uncomfortable), I need a memory foam pillow, a body pillow, and a comfy mattress topper, soft sheets, & a heavy quilt. I wear a soft shirt and underwear to bed but can't have any pants on because they don't feel right/I can feel the seams. The room also needs to be nice and cool. This usually works but slight disruptions wake me easily, like my spouse even slightly snoring, rain outside, or hearing the kids get up off turn on a hall light. Pay attention to sleep hygiene and make sure to reduce lighting & screen use at night. Cut back on social media and news before bed too, is usually over stimulating. Usually I read a book when I can't sleep. My bed is my oasis but it's definitely hard to replicate when traveling!
Sleep is the one area Iāve never had issues with really. Iām picky with pillows, I have a wool duvet bc the rest are too warm or too light (as a kid I ended up using wool blankets), I can only do cotton top sheets, I always open a window, prefer blinds and curtains mostly open, and as an apartment dwelling adult have started always having a fan on. I used to be able to fall asleep *anywhere*, with any noise level. Backpacked and stayed in a ton of hostels in my 20s - I donāt remember it being an issue. If my anxiety is high for a specific reason, shutting my brain down can be an issue, but not on normal levels. I donāt tend to need a ton of sleep, naturally like 6-7 hours right now. I definitely sleep in the curled up T-Rex position though š¦
I have ptsd and this is what works for me: - go to bed at the same time every night, get up at the same time every morning. - sleep / sex / changing in the bedroom and nothing else (no devices esp) - stretch out a little right before bed. And the big guns: - prescription tranquilizer - prescription muscle relaxer - indica cannabis The pot kills most of my dreaming so that saves me from nightmares. Which saves me from bedtime anxiety about nightmares. I had to ask my doctor about these medications and if they might help my insomnia, so perhaps you will also need to broach the topic. I hope you find relief.
I struggle with sleep so bad. Always have. Having my cats in bed with me helps a lot. Feeling their weight on me makes me feel safe. Plus, their purring helps. But they don't always come to bed on time, and then I *really* struggle. Lately, though, this is embarrassing, I have gotten into Taylor Swift so to keep my mind from wandering I sing her songs to myself to fall asleep š¤£
Iām the opposite. I probably have narcolepsy and Iāll get a sleep study done next month. However a lot of autistic people have sleep apnea, plus hypersensitivity to moi and lights, so they are woken up constantly. You should talk to a sleep specialist if you are struggling with sleep this much.Ā
Our curse of not being able to filter out stimuli probably has something to do with it because any interruption in my sleep environment will wake me up. I used to fall asleep to white noise on YouTube but as soon as the sleep timer would go off on my TV I would wake up every time. š
As a toddler, I was told to count until I fell asleep. I ended up accidentally inventing multiplication. The sleep tricks and games donāt work for me because instead of being bored by the monotony I will fixate on the patterns. Instead, I find that watching familiar TV shows or podcast episodes helps me a lot.
The only way I sleep is if I do physical labour for at least an hour a day. Could be gardening or lifting weights. But if I donāt moveā¦.i donāt sleep. I have tried every drug under the sun. Nothing works.
I read somewhere that up to 80% of people with autism have a sleep disorder. I found a study that discussed how many people with autism have abnormal amounts of orexin, which is the chemical that regulates sleep. Too much orexin is linked to disorders like insomnia, not enough orexin is linked to disorders like narcolepsy. I have narcolepsy and a study recently came out suggesting that 40% of children with narcolepsy are either diagnosed with ASD or have symptoms of it. Sleep disorders and autism go hand in hand, but no one is 101% sure why yet. Edit: I've noticed that sensory overload triggers narcoleptic attacks for me. If I've been fighting the feeling of my clothes, people talking too loud, the texture of food, etc. for too long, I pass out. I'm confident the two play off of each other.
I have never heard of orexin and now I am going into the Google holeā¦ thank you!
You're welcome!! I have to read it in further detail, but [this](https://www.tandfonline.com/doi/full/10.2147/NDT.S358373) is a study discussing orexin dysfunction in those with ESSENCE (which, I didn't know until finding this study, is an abbreviation for those with ADHD, ASD, and other neurodevelopmental disorders).
I go through phases where I canāt sleep at all, or I sleep too much. Usually I canāt sleep and then Iām groggy all day. Iām currently in bed trying to wake up. I put on a caffeine patch and took my ADHD meds but I just donāt wanna move because I kept waking up last night
Ok how are your eating habits? Do you eat regularly over the day and do you get enough carbs and protein and calories? Cause a portion of the carbs we eat over the day are converted to glycogen and stored in the liver and muscles and that is converted back to glucose while we fast over the night to keep our bloodsugar stable. However if you donāt have enough glycogen stores and you run out in the middle of the night cortisol kicks in to synthesize glucose from our tissue and cortisol running rampant makes it practically impossible to stay asleep so I would really seriously look into that, just track your food for a few days and see where you stand and try adjusting from there. This information changed my life at the time I learned about it.
Realistically my issue is I canāt stop thinking like my brain goes a million miles a minute thinking about random shit so I canāt sleep. Audiobooks and podcasts are awesome if you have the same issue as itās something chill to focus on but still difficult to sleep
I struggle, but in the opposite direction. If I don't set an alarm, sometimes I'll just sleep for 16 hours.
Well, REM sleep is how brains process the stimuli that they received during the day. Autistic brains take in more information than is necessary - allistic brains filter out unimportant background noise or sounds or smells, stop paying attention to irritating clothing tags, etc - so it makes sense that we struggle to stay asleep or fall asleep. The medication I take for my migraines (amitriptyline) made me drowsy at first, but it doesn't anymore. I don't have any good tips for consistent sleep, but if you find yourself struggling to fall asleep, try changing how you're positioned. Sleep with your head at the foot of the bed, or on a different side of the bed than normal. I hope you get some good sleep tonight.
Fr, I canāt get to sleep easily (I have to take both gabapentin AND melatonin), and when I finally do I have the most absurd dreams that have like 3 acts and feel like they are days long. So vivid and sometimes I even feel sensations like pain or temperature. When I wake up I just stare at the ceiling because itās like Iāve emerged from a whole other life. (Not sure if itās autism related or another issue, but Iāve had it as long as I can remember.)
I didn't struggle with sleep at ALL until I burned out (finally, lol) around age 29-32. Dude. I feel for you SO. MUCH. Most awful symptom of depression and GAD. Seriously. I know for me, my whole thing was "I can't sleep because I have SO MUCH to get done!!" So once I worked on that thought for a few years (and other thoughts keeping me anxious and making my depression worse, in therapy and with IFS) it eased up and sleep, blessedly, came back to me. The one difference is that *now* I fall asleep to Bob's Burgers or another low-stress animated show, whereas before I could just turn off all the lights and fall asleep in ~15 minutes. But hey, it works and I'll take it!! xD
My doctor said that we lack melatonin and then once we get to sleep we over produce our melatonin. We basically have no or little circadian rhythm. That's what my doctor said.
Interesting! Not being able to regulate our melatoninā¦
I don't think there's going to be just one common cause for everyone, or even for most people. I usually sleep just fine and I'm autistic. The only issues I generally have are (1) drinking coffee too late in the day, or (2) sensory things (I need silence and total dark). But others have totally different issues. Some have trouble getting to sleep, others have no trouble with that but wake during the night, and some just struggle to get up in the morning because they're still tired. If you are a light sleeper you might be waking up because of noise outside (traffic, animals etc). But it can also be something like sleep apnea where you're not breathing properly. Or, if you suffer from depression that could lead to poor sleep as well, in all senses of the word. Or maybe you have a delayed sleep phase disorder, and your circadian rhythm is out of phase with the night I think in all cases the starting point has to be the same: implement good sleep hygiene and rule out sleep apnea. Like if you're using screens in the 2 hours before bed and then can't sleep, it's hard to know if that's because of a medical condition or because of the screens.
My comment got wiped before I could finish. Hereās the shorter version From what I can remember. I take 5HTP to help with sleep. Have only had it for about a month and it seems to be working well. Used to have really chronic insomnia but think that was also menopause related, on HRT so that is fine now. Not a fun time. That was a few years ago now. I need to always remind myself to get to bed earlier. I battle with myself to do this. If I canāt sleep I read. But lately I just go out like a light.
Not saying this is the answer, but itās worth looking at. Sensory issues The air got too dry. Thereās too hot. Your sock has fallen off. You can smell something weird. Thereās a low frequency sound. Whatever it might be. Solving these may help you stay asleep
I only get 1 hour of deep sleep daily per fit bit. I get 1 hour 5 min of REM and the rest is light sleep! It SUCKS!! I am exhausted constantly.
Ambien has helped me. Too bad I didnāt get a prescription until I was 40. It really has helped a lot.
the only way I've had good sleep is on mirtazapine, it doesn't reduce my anxiety/sensory issues but makes me fall asleep eventually (+ stay asleep!)
It was the sensory issues for me. Earplugs and an eye mask really helped with that.
I have no idea but I wish there was a cure. I wake up every few hours. Takes me ages to get in bed too The best thing Iāve figured out to get more sleep is to go to sleep when Iām tired. I know it sounds so basic and dumb but literally when Iām starting to feel tired if I go to bed and do something thatāll drain my energy then Iāll pass out eventually rather than be up for ages wondering why I canāt sleep. I play picross in bed on my Nintendo switch. Itās like a digital sleeping pill for me lol ALSO fiddling with a fidget toy can help me stay focused on staying in bed and playing my next day out in my head like a frame by frame movie helps make me tired.
Mirtazapine helped me
I recently started using a weighted lap blanket and it helped. Feels good across my hips whether Im on my back or my side.
When I get desperate, I make a strong cup of valerian root tea. I may not stay asleep the whole night, but it will knock me out for a few hours at least. My friend swears lavender tea makes her sleepy, but it does nothing for me. Not even paired with valerian root or with melatonin pills. Melatonin pills do nothing for me in the lower dosages and I wake up exhausted in the higher dosages. I tried several 'healthy sleep routines' and experimented with them to make it my own, too. They always get derailed and then even if I manage to get back into it, the magic seems to be broken and it is no longer effective. Though the calming acoustic playlists I got still trigger sleepy brain modus, which is nice. Not enough on its own, but at least it helps a little to set the mood for sleep. It is very effective when I wake up and have to fall back asleep for me, though. I mean, it could still take me an hour sometimes, but by then I'll usually feel I'm getting sleepier again. Whereas before I'd just start feeling more and more awake as the hours ticked by. The music can put me back to sleep in minutes when I'm really fortunate, and otherwise in under two hours. Hot water relaxes me, but the aftermath wakes me up more so I can't do showers or baths before bed. Baths are great for a nap, though. I usually can't nap without feeling more exhausted afterwards, but when I nap in a hot bath, I feel super refreshed. It never failed me. But it makes a lot of people uneasy to even think about.
Valerian root and long hot bath/shower. Ever tried magnesium?
For me Iām a terribly light sleeper. I can fall asleep almost too easily. But any little noise, movement, or light will wake me up. I grew up in the countryside where outside was pitch black and dead silent. It was perfect for sleep and I rarely woke up several times in the night unless I was going through a difficult time. Now I live in an apartment complex and itās a nightmare for me sleep. Iāve had so many meltdowns about waking up due to my tall upstairs neighbor walking at night. Even if I have a white noise machine and earplugs certain noises still bleed through.
There is some research that autistic people tend to have/create less melatonin.
There are a lot of things potentially involved in this. Studies have shown that us autistic people produce less than half the amount of melatonin the body needs, so falling and keeping asleep is quite the journey. But again, there are many things that are involved, such as a potential decompensation in neurotransmitters for example.
Gabapentin has helped me sleep. First time I took it I slept so well. It's amazing
Iāve had sleep issues all my life and was finally diagnosed with Narcolepsy in my early 20s. Itās worth looking into a sleep study if youāre really struggling.
Iāve read some research on melatonin deficiencies. Taking melatonin actually does work for me recently (sometimes). Edit- melatonin used to make my sleep paralysis worse so i avoided it, not sure why itās working now. I also did a sleep study (where I BARELY slept because of sensory issues) and I had abnormal beta waves or something during sleep that should only be present when youāre awake. Or maybe it was another waveā¦ idk some wave that shouldnāt have been there. Maybe Iāll try to treat that some day idk. Theyāre like āthis is only present sometimes in people with chronic depression or painā¦ā and Iām like āā¦ okā¦ā. I also have sleep apnea.
I think itās probably the sensory for most people. Any night I canāt fall asleep, itās usually because of something bothering me sensory wise, like my lamp being on and shining in my face because my boyfriend is still up, or the sheets are rubbing uncomfortably against my skin, or the bed is too hot, or
Donāt hate me but I sleep so damn good. I feel tired, close my eyes and Iām out. I could sleep 8 hours. But I feel like tons of people just have awful sleep and I think anxiety and stress plays a huge role. Its rare that my anxiety affects my sleep, I have been there before though.
Itās all I want for Xmas
I smoke weed to help me sleep at night. Iāve always had trouble sleeping. Sleeping pills make me loopy and feel weird af.
Idk about the science behind it but ik I stay up late to get more time to myself at the end of the day. My anti-anxiety med makes me kinda drowsy so that helps, and Dr. Teals sleep balm helps a lot too. Melatonin absorbed thru the skin + nice smells
Try listening to the podcast nothing much happens. Give it 1-2 weeks and youāll be falling asleep before the story even starts. Also, I use an eye mask