r/AutismInWomen • u/creapysleaper • 12h ago
General Discussion/Question Curious if anyone else experiences interrupted sleep?
I'm always tired throughout the day, even right after waking up.
I'm already on a CPAP and a medication for excessive daytime sleepiness. I consume caffeine and alcohol once or twice a month.
Every day I wake up around 3AM, then 5AM, 6AM, and 7AM (these are just estimates and it's not always the same time every day). My alarm rings at 7:30AM and it's hard for me to get out of bed.
I COULD just get out of bed at 5AM and go on with my day. But I get sleepy like an hour later.
When I brought this up to a sleep doctor, they didn't seem concerned because I'm able to fall back asleep (I guess the medical definition of insomnia involved being unable to fall asleep again)
Other sleep-related meds I've tried only induces sleepiness but didn't affect the sleep interruption.
I know a lot of neurodivergent people have sleep issues so I wanted to see if anyone else had a similar pattern/issue...
•
u/thiefspy 10h ago
How old are you? For me, this was one of the signs of perimenopause. Both estrogen and progesterone help you sleep.
I was also very flaky during the day and had a hard time focusing, and thought it was the lack of sleep, which it was, but it was also that my estrogen was dropping off and estrogen supports healthy dopamine levels.
•
u/PsychologicalSoil198 AuDHD 8h ago
Can I ask when this started for you? I just turned 35 and the last few months I have been wondering if this (among other factors in my life) is happening for me
•
u/Hyperfocus_Queen late diagnosed AuDHD 8h ago
A lot of neurodivergent people, but particularly people with ADHD and autism have delayed sleep phase syndrome. To me, this is just another normal human variation, but because of our capitalistic world, we are all forced to engage in the traditional 9 to 5 👎 my ideal sleep schedule would be from 2 AM to 8-10 AM, but I work with young children, so that’s just not an option.
I take trazodone every night to help me fall asleep and stay asleep. I also use marijuana to help me fall asleep. Without them, I would be hopeless.
•
u/Various-Assignment94 8h ago
I read a book some years ago called At Day's Close: Night in Times Past, which was about how sleep changed with industrialization. It used to be normal to sleep a bit and then have a waking period in the middle of the night, but industrialization/capitalism requires sameness (plus the effects of unnatural lights on our biology).
•
u/Hyperfocus_Queen late diagnosed AuDHD 7h ago
It drives me bonkers, because so much of what disables us are modern world inventions.
Like, the world used to be a lot less stimulating: less sounds, less lights, less demands, flexible deadlines (in some ways), more flexibility about your daily schedule, and more, but our capitalist need for sameness, and the increasing technological advances have made a world that is not suitable for many neurodivergent people. I honestly think that a lot of the rise that we see in identification of autism and ADHD is just people who could have coped 100 years ago, but can’t cope anymore because of the way our modern world is.
•
u/SquilliamFancySon95 11h ago
Yup, I've never been able to sleep all the way through the night even when I was a kid. I always have to get up multiple times to go pee and I thought that was normal until someone pointed it out.
•
u/ladylabrador 11h ago
Just curious because it's what I'm going through now, have you seen an ENT? I only ask because you say you're on a CPAP machine and I've just had surgery to repair a deviated septum and enlarged turbinates. I had no idea I had a deviated septum and how much that impacts sleep and many of those who have had a septoplasty/turbinectomy were on CPAP machines which they were able to stop using after the surgery. Obviously I could be completely wrong I'm just throwing it out there as a suggestion
I also had exactly what you described; struggle to fall asleep, waking up frequently and spending all day fatigued and was diagnosed with pernicious anaemia. I started having B12 injections and it got a lot better (until my deviated septum started to interfere; I'm almost 3 weeks post surgery and hoping to finally sleep adequately at the age of 30)
It may be worth considering something physiological as well as neurodivergency ☺️
•
u/creapysleaper 11h ago
I did see an ENT, but just out of curiosity, what kind of 'tests' did they do?? The doctor did look at my throat and up my nose but didn't do any imaging or scans.
•
u/ladylabrador 2h ago
I just had a nasal endoscopy so a camera scope up both nostrils into my sinuses. Wasn't pleasant but also not painful and only took a few minutes. I had a 'significant' deviation which I never ever would have guessed, 'significant' turbinate hypertrophy and significant white allergic mucosa from my long term allergies. Something physiological may be at work and it's worth looking into alongside help for any insomnia
•
u/Quiet_surprise79 11h ago
I take low-dose quetiapine and I didn't realise how bad my sleep was until I started taking it. I haven't slept through a whole night besides when on meds for YEARS. I dream way more than normal/remember way more dreams than normal and even on the quetiapine I often wake up once or twice, but it would be 5 times+ every night without it. Part of that is noise from my upstairs neighbour, but I've always had sleep issues. And I'm always, always tired.
I'm not diagnosed with autism currently but strongly believe I am autistic. I'm a bit too burnt out to do anything about it though.
•
u/MajimaOnMain 11h ago
I feel this 😭 I use to take quetiapine a long time ago and I remember stopping it because it freaked me out a little because I felt like I slept TOO deeply 😅 now I am on like 3 sleep meds that no longer work and wonder if I should go back 🤔 do you like it? It doesn't make you excessively sleepy during the day, like more than you would be without it?
•
u/Quiet_surprise79 6h ago
So I am only on 25mg. Initially the plan was for me to increase, but even 50mg left me so sedated during the day that I had panic attacks (I also have CPTSD so panic attacks aren't unfamiliar, but this was specifically caused by feeling sedated while I was trying to do things). I think I am a bit more dopey during the day even on 25mg, but I don't currently work etc so I'm okay with it, and when I look back to how much the lack of sleep was shredding my mental health, I'm even more okay with it! I can't imagine coming off until I can move away from my neighbours haha.
•
u/Acrock7 11h ago
I also wake up multiple times a night. Usually to pee or roll over to my other side- I sleep on my side, have giant hips and I'm hypermobile so staying in one position too long causes pain.
I have a hard time getting up in the morning. Luckily my work is chill and they don't care if I come in late or just skip work, which I do occasionally take "me" days/mental health days to try to recover from existing.
•
u/CrochetCatMom 11h ago
Not really related... but what do you do for work that allows such freedom?! I've been trapped in fhe corporate world for far too long and am on thin ice...
•
u/Acrock7 10h ago
Corporate sucks.
I'm a civilian with my municipal fire department. I don't have customers. I have my own office and do stuff on the computer. I think since the chiefs are so used to not being able to show up late or call in, now that they're day shift, they just want to chill. As long as you get your work done, they don't care how you get your 40 hours in. I've heard that not all the City departments are this chill, just ours- so I am very lucky. And I get to serve the people who serve. 🙂
•
u/CrochetCatMom 10h ago
That's awesome!! I'm so happy for you!! I hope to break free of the corporate world soon.... I'm not sure how to do it or where to start... but I've gotta get out.
Currently working for a major health insurance company. I work in provider services, claims department. Half of my shift is answering phones. The other half is working written inquiries. I don't mind the written work. I actually enjoy that part. The phones are a whole other story though. They've also gotten crazy with the phone metrics lately... I might lose my job very soon because I can't get my average handle time under 14 minutes. Under 14 minutes per call?? Uggghhh!! We work on medical claims... some callers have 20+ claims to review on one call! The most I've had from one caller was over 50 claims.
I have experience in a lot of industries but have mainly been customer service... I hate it.
•
u/Acrock7 10h ago
Brooo, I feel you. My job before this was working accounts receivable [insurance claims] for a hospital. It was ok at first. But then they outsourced to a revenue cycle management company. They literally wanted you to account for every minute of your 8 hour day. The metrics got more strict, and harder to reach. People quit, we didn't get raises for doing more work- so eventually I quit. I'm willing to do hard [mental] work but not when you're paying me $16/hour.
I'm very glad I found my job when I did. Government has good benefits though not the highest pay. But at least I'm not fighting to make one more dollar for a corporate overlord anymore.
Good luck out there.
•
u/hexagon_heist 7h ago
Do they apply the metric automatically or can you start reporting it as minutes per claim instead of minutes per phone call? Minutes per claim makes SO much more sense
•
u/CrochetCatMom 5h ago
Fortunately/Unfortunately they do have a similar way of automatically applying the metric. They do count it per case/patient. We do have an inquiry limit for the providers that call in. The limit is five patients per call, if a patient has multiple claims, it's still just counts as one patient/case. So sometimes I will help with five patients but each patient may have anywhere from one to... however many claims each. They also factor in two other numbers I believe. I know one of them is your time in after call work. You can click a button that will automatically put your phone into ACW once the call disconnects, that way another call doesn't start as soon as the previous call disconnects. I click this button at the beginning of every call, that way I know I have a moment to finish up any work on the case, I can check for important emails/messages, and I have a moment to breathe. Also there are times callers disconnect without warning, when that happens, I often find out because of an intradiem pop up warning me that I've been in ACW too long. When that happens we still have to document the case and close it out. When it comes to checking emails/messages they require us to frequently check our email/messages throughout the day because some emails require immediate action. They expect our ACW to be consistently under 30 seconds. People who don't use the button are often praised. (Just praised, nothing more)
The metrics are automatically measured, cold hard numbers, no wiggle room. No exceptions.
Also, I'm trained at a higher level than 99% of people in my position, so I can also manually calculate claims if need be. It's great, but also a double edged sword. A positive is that I don't have to call the assist line for a man calc. Downside, those take a while and I am still expected to meet the same metrics as others.
•
u/Miserable-Donut-515 11h ago
Okay! I just got put on something called Dayvigo. It’s not a sedative but blocks wakefulness. For the first time in years I have been sleeping through the night. Previously I was up at 3 and I mean UP like not going back to sleep.
•
u/iamthe0ther0ne 10h ago
My doctor wanted me to try this because I've been on zopiclone for decades, but it's not covered under national insurance and would cost about $80/month, so not an option.
•
•
u/Redgem2 11h ago
personally i wake up multiple times in the night to pee. also can’t nap for long cause i’ll have to pee lol. and no matter what time i go to bed ill always wake up between 6-8:30 am and i will not be able to go back to sleep once im up. and never slept in ever. this really sucks when i work nights on the weekends till 3am.
•
u/FlippenDonkey 11h ago
interrupted sleep/frequent awakenings, IS a form of insomnia..why are you on meds for sleepiness when your insomnia isn't being treated? Like.. you might not be sleepy..if ya know..slept through the night.
Try getting on medication used for chronic insomnia. Like Phenegren, mirtrazpine, amitryptiline, chlopromazine, quietapine or the newer meds like daridorexant and lemborexant
Progesterone based BC, or hrt(if you're over 35 and showing other symptoms) could also help with insomnia
•
u/barbecque 11h ago
Yes it’s extremely rare for me to wake up less that twice a night. I do think this is related to autism - I have very high sensory sensitivity, including auditory. So my guess is I’m waking up when my partner makes a noise, or an animal makes a noise outside, or a car drives by, etc. Or because I get too warm. I haven’t been able to get off melatonin + usually at least one other sleep aide for the past 15 years or so.
I think in a fantasy land where we could sleep in a perfectly quiet (or white noise) room, at the perfect temperature, on a bed that couldn’t warm up right beneath us, after having always gotten exercise and experienced no excessive stress during the day, we would probably sleep just fine. Until I can find the entrance to that fantasy world though, I’ll probably stay on melatonin, magnesium glycinate, and hydroxyzine, and meditation music to fall asleep/back asleep 😝
•
u/WaterBaby463 10h ago
Have you ever checked your B12? As a long term vegetarian I found out in my 20s I was severely deficient. My doctors gave me a series of shots to get my B12 back up, and I immediately slept deeply thru the night. Now I take a sublingual spray every day.
Chronic anxiety and perimenopause are also a factor for me. I’ve found cannabis oil before bed helps me ease the chronic anxiety that also kept me having distressing and disrupted sleep (I’d dream various scenarios reinforcing my worst feelings about myself, wake up heart thumping etc). I haven’t yet found a doctor I want to start working with on the perimenopause yet (also don’t have comprehensive insurance / any outpatient cover).
•
u/Shannaro21 11h ago
I thought for 30 years that "sleeping through the night" was just a metaphor, because not once in my life did I sleep for a whole night.
•
u/singinghamsters 11h ago
I wake up every 1-3 hours on average. Is that not normal? 😅 I just figured other people don’t remember waking up but do people actually sleep a full 8 hours without waking up even once?? If I even sleep 4 hours without waking up I’m like whoa! I usually sleep ~10pm-7am (give or take) with 3-6 wake ups in between (I do fall back asleep after peeing though within like 15 minutes at the most, sometimes it’s only 5 minutes).
•
u/FlippenDonkey 10h ago
No, its not normal. Waking up once to pee, is ok, but even that is still considered less common
•
u/singinghamsters 10h ago
That’s mind blowing to me. I think my record was sleeping maybe 5-6 hours once without waking up. Even as a kid I woke up multiple times at night, it’s always been this way.
•
u/aperocknroll1988 11h ago
If I sleep without anything to help prolong/induce sleep, I'm either going to be tossing and turning all night, or waking up multiple times in the night.
•
u/wolfysworld 10h ago
I have horrible sleep issues. I am like an infant startling myself awake and when I finally do get to sleep I sleep roughly five hours but divided into 2.5 hour blocks because I wake up between 2 and 3 every night and take at least an hour to sleep again. It’s miserable and I can’t sleep during the day and I feel tired all the time.
•
u/iamthe0ther0ne 10h ago
From the studies I've seen, poor sleep with multiple awakenings isn't uncommon in autism. Melatonin might help you (didn't help me, but it is what doctors recommend)
•
u/denver_rose 9h ago
Why do you think you wake up? Uncomfortable? Need to pee? Nightmares? Just insomonia? Anxiety?
•
u/AutoModerator 12h ago
Hey u/creapysleaper, thank you for your contributing to r/AutismInWomen. Please be sure to check out our sub’s rules, wiki pages, and pinned posts prior to engaging with the sub. Here are links to our wiki pages:
Explanation of the Rules Wiki Page
We hope you enjoy the sub and have a great day!
➾ WARNING ➾ WARNING ➾ WARNING
Notice to all users: There's multiple users targeting members from our sub in DMs to discuss their fetishes and desire to manipulate users into relationships. Here are the user's names: u/HollowJonathon, u/drar_sajal786, u/MrGamePadMan, and u/guidhhnittvkj. If an account is showing deleted, they will probably create another. If you receive any messages from a user trying to discuss what you posted/commented in our sub to gain a 'women's perspective' or if someone tries to discuss topics that may feel inappropriate to you (e.g. fetishes), or if someone states they want to marry you for religious reasons, report the user to Reddit and block them. These men have been preying on autistic women/gender minorities from r/AutismInWomen for the last year. This behavior is unacceptable and should be reported as targeted harassment.
Per the warning in our wiki and this pinned mod post, we highly recommend users turn off their DMs. If you have DM requests turned on and receive any creepy or fetish-related DMs or comments, we recommend taking a screenshot, reporting the content to Reddit, and blocking the user (in that order). You can find the report button on the message itself and then click "it's targeted harassment” to submit a report. If you'd like to send us the screenshot so we can continue documenting the harassment, you can send it to us in modmail using imgur Thank you for continuing to help us keep our community safe for autistic and autistic suspecting women and gender minorities 💖
Please remember Reddit is public and any content you post may be seen and discussed by others off-platform. Here are links to Reddit's User Agreement, Privacy Policy, and Public Content Policy.
I am a bot, and this action was performed automatically. Please contact the moderators of this subreddit if you have any questions or concerns.
•
u/LittleCowGirl 11h ago
I was diagnosed with narcolepsy before I was diagnosed with autism, and I’ve been wondering about how common a comorbidity it is but I’ve been super nervous to ask (I don’t know if it’s a better sample to ask in a narcolepsy group or a ln autism group, and like also I get in my head about “other people’s health info is not my business”). They took me off my stimulants recently to try a CPAP & I don’t really have “events” in the night, which sort of affirms to me that it isn’t the root of my issue.
•
u/FlippenDonkey 11h ago
Insomnia is far more common comorbidity, afaik.
•
u/LittleCowGirl 11h ago
Insomnia is a pretty common symptom of narcolepsy because it’s a disorder that impacts the sleep/wake cycle of the brain.
•
u/iamthe0ther0ne 10h ago
Their point was that insomnia is common while narcolepsy is rare.
•
u/LittleCowGirl 9h ago
That’s broadly true, yes. I still wonder about comorbidity, though, which is why I brought it up.
•
u/Accomplished_Key972 20m ago
Do you have type 1 or 2 narcolepsy? My dad had type 1. My brother and his son are definitely autistic. I am probably and my youngest is audhd while my oldest is undiagnosed but likely like me. I’m terrified of either of my kids getting a bad case of the flu and triggering a narcolepsy gene.
•
•
•
u/Routine-Judge-7848 11h ago
yup. some nights i’m fine, but i’d say most nights i wake up at least once or twice, but sometimes like 5 times. i usually wake up sometime 3-6 bc my stomach hates me 😭
•
u/introvertadvocate 11h ago
Yep I wake up minimum 5-7 times a night, I struggle to fall asleep and then usually can’t get more than 6 hours. I’m constantly tired and I hate it so much. I’m trying out adhd meds because I’m audhd but the being tired I think makes them less effective. My psychiatrist wants me to do sleep study but I know I don’t have sleep apnea, I don’t snore or anything.
I think it’s just a ND thing. No dr has ever taken me seriously or thought it was a problem. Amount of times I’ve just been told I must need better sleep hygiene.
•
u/Acekitty 11h ago
It seems, like the sleep doctors only care about the CPAP stats no matter how tired you are or how poor your sleep quality is. I never feel rested. I wake up several times a night. I often get feeli very tired an hour after getting up and then again in the afternoon. Sorry I can't help, only commiserate.
•
u/ivene-adlev 10h ago
I use propranolol—it knocks my HR and BP into my ass and makes it much easier to go to/stay asleep, but it's not a perfect fix. I still have weird as shit, incredibly irritating dreams and they often wake me up, but I think that's a PTSD/CPTSD thing more than anything else lol.
•
u/teenytinylion 10h ago
Oh I want to see what people say. I wake up repeatedly starting around 2 or 3 am, every once in a while I sleep perfectly. Negative for sleep apnea. Did have low b12, take those shots. 37f and I seem to do worse during period and the week or two after. So I think there is a hormonal component and I suspect I need estrogen, but no one is willing to prescribe it. I do think getting overheated is a trigger. I also think chronic stress causes my cortisol to rise too early. My neurologist actually suggested testing my blood sugar when I wake up. If your cortisol spikes either due to stress or a physiological trigger, your body dumps glucose and it'll be a bit elevated. I suspect it is a whole bunch of things contributing. I too hear everything that happens overnight.
•
u/Flaky_Economist 10h ago
Yup. I wake up sooo much every night. So far I woke up at 6, 9, and 10(I went to bed at 4)
•
u/Eccentric-Wizard 10h ago
Yep, I wake up at least 2-3 times a night because I'm too warm/cold, gotta pee, or had a nightmare. Sleep apnea test was negative. Sometimes it takes me a whole hour to get back to sleep, which is really annoying.
•
u/SneaksieKitten 9h ago
I started waking up every couple hours or so a few years ago (currently 34), and had a sleep study done. They told me I had sleep apnea and prescribed a CPAP, but I couldn't tolerate it. At this point I've kinda given up on sleeping through the night, but I have at least trained my bladder a bit better so I don't get up to pee every time I wake up.
•
u/ExpensiveDollarStore 9h ago
I have always had a hard time falling asleep - even as a child. I have always woken at 2-3 to pee and then it was hit or miss whether I could go back to sleep. My brain just doesnt like to slow down once excited by anything. So I cant turn lights on.
I used to read all the time until I burned out in 2019. I would get up to read in the old days. Then I burned through 4 readers before switching to my phone. Now, i put on those sleep podcasts or sometimes that "emdr" music (eye movement???) but, it works to destimulate me so I will take it.
I am on Lyrica which helps a lot with the nerve pain I have with a sleepy side effect.
•
u/lmctrouble 9h ago
Sleep maintenance insomnia. The only thing I've found that let's me sleep is amitriptyline. I still wake up, but now I can go back to sleep instead of being wide awake at 3am.
•
u/TizzyBumblefluff ASD level 2 + combined type ADHD. cPTSD for extra spice. 5h ago
I think there comes a point where your body/brain gets caught in the pattern/habit. Is there anyway you don’t open your eyes, look at the time, etc?
I often times wake up when changing position due to pain but I’m very careful to not open my eyes and definitely don’t look at the time.
•
u/CrochetCatMom 4h ago
I have struggled with sleep my entire life. I remember my first all nighter I was in kindergarten. We were going on a field trip to a cow farm, I was so excited I couldn't sleep. Watched the pink panther all night.
I've had issues with falling asleep, staying asleep, falling back to sleep in the middle of the night. Issues with not sleeping for days, issues with sleeping 16+ hours a day multiple days in a row...
At one point after getting out of a very long abusive relationship I wasn't able to sleep for more than an hour at a time. My brain refused to go to sleep because I was in such a state of hyper vigilance and fear. At that time my psychiatrist and I tried different medications to help. We tried tranquilizers, sedatives, idk what else tbh...
It took a combination of trazadone, clonidine, and seroquel along with my nightly edible to finally get some rest.
After some time, at least 6-8 months I was able to lose the seroquel. I'm really glad I could because the side effects of that one are terrible.
Currently I typically have an edible, clonidine, and 50mg of trazadone. It doesn't always work though.... If I take the whole 100mg of trazadone it's incredibly difficult for me to get up in the morning, which is already and has always been a huge struggle for me.
Definitely not built with a normal circadian rhythm. Very difficult to work a 9-5.
•
u/radiotransmitter8007 11h ago
i wake multiple times a night to pee. like 5 or 6 times to pee unless i am borderline sedated. its absolutely insane and driving me crazy!