I sure could use your help, everyone! I'm suffering.

[u/bad_ukulele_player]

I have SEVERE treatment resistant insomnia in addition to D.S.P.S. I’ve been on sleep meds for 25 years but am not physically dependent on any one of them. I started taking them to sleep at a “reasonable hour” of 1 am so that I can be awake during the day and not be a night walker. For years it worked. Now I only sleep twice a week on meds that still work. I alternate between meds from different classes. Everyone is understandably telling me to get off all sleep meds. Here is the problem that I need your help with: If I fall asleep when my body naturally wants to, it would be about 8 or 9 am, and only for about 3 hours max. I NEED 9-10 hours sleep to function. If I were to get off all of my meds I surely would destroy my fragile circadian rhythm and even if I could get that 9-10 hours I would wake up late in the afternoon. I don’t want to live that way! For years the meds worked at least sometimes. Now they work twice a week. My insomnia is so severe that I cannot nap. I have virtually zero homeostatic sleep drive, so if I sleep two hours one night, I don’t crash the next night. I am bed-bound from sleeplessness 5 days a week. What advice can you give me. My Stanford Sleep Neurology is useless.

[u/thee_body_problem]

What's your light exposure like? Meaning do you use a lightbox or go outside and get sunlight at particular times, and/or wear blue light blocking glasses at night? And what meds exactly are you taking and for how long do you take them before rotating to another?

Cos medication is one broad and powerful avenue to try, but controlling your light exposure and consistent fasting are two other totally separate possible routes to explore. Doctors often only know about the med route though.

[u/bad_ukulele_player → u/thee_body_problem]

I don't know my lowest core body temperature (nadir) so I don't know when to time morning light. I used to get out in the sun as soon as I naturally awakened. Now that my sleep is so messed up, I'm not sure how much my circadian rhythm has delayed. If I get out in the sun or use the luminette or SAD lamp too early it can further delay my DSPS. If I get light exposure too late, it will be useless. There is no CBT sensor (there should be!!!) available to the public. It's hard to use a rectal thermometer to find out my nadir. But I'll do it if that's what it takes. As for evening light, I use amber/red light up to three hours before bedtime.

For at least 12 years my rotating meds worked relatively well. I had a life anyway, instead of being bedbound like I am now. Now I take phenibut/7.5 mg mirtazepine/25 mg trazodone twice a week, belsomra twice a week (it worked great for 10 years and all of a sudden stopped working), 7.5 mirtazepine/2 gabapentin two nights (useless), and the lowest dose of lunesta one night (very little sleep). I alternate because I build a tolerance to any drug within a week. I used to take Ativan, a small dose. I had a HELLISH experience on that drug - no words can describe. I attribute the cause of my severe insomnia to the Ativan. I've never slept well since my last dose in 2013, after a lengthy withdrawal. My central nervous system, gaba/glutamate balance etc is totally fried.

[u/thee_body_problem → u/bad_ukulele_player]

Oof yeah, benzo withdrawal is a rough ride for sure. Good call on being cautious with light timing too, although getting sunshine where you can is good for many reasons beyond sleep timing. Red light before bedtime is great but any blue light from screens could still be a factor, iirc devices generally don't turn down the blue as much as they just turn up the red to make it look nicer on the eyes but the activating wavelengths are still present under the warmer tone, if that makes sense. So blue light blocking lenses or full-on dark therapy with an eye mask (as some people use for bipolar mania) could be even more effective.

Something you could try that's independent of figuring out your temperature and light timing is timing your food intake. I've been doing intermittent fasting the past year where i fast 16 hours before i wake up, inspired by an old jet lag trick to allegedly help the food-controlled cellular body clock align faster with the light-controlled body clock. Basically i wake at noon, eat breakfast asap (high protein also helps), i eat my second and main meal of the day just before 8pm, then nothing but water til the next day. It's not a cure but personally i find this eating schedule does make a surprising difference, especially given i used to have to snack just before i slept at 4am or i would wake up every couple hours with wild fluttery blood-sugary weakness sensations. Really, I used to feel hungry and food-obsessed all the time, but so long as i eat enough protein these days now i am unbothered about food between meals and at night i never wake up weak anymore. This might do nothing for you or it might help a little, ymmv.

If there's any chance that your insomnia was triggered or worsened by a neurotropic virus like flu or covid that is known to cause sleep problems even in normies, some people find wearing a low dose nicotine patch for a week or so helps with post-viral brain fog and fatigue. Stimulants like nicotine can worsen sleep for some people though so again ymmv. If you tend to get dependent fast then definitely don't stay longer on nicotine than a week, but you can do a week once every month or so if it helps.

How flexible is your daily life if you were to let yourself sleep on your natural schedule though? Cos you're now bedbound, with fatigue and not working I'm guessing? So it really sounds like you've stretched your system as far as it can possibly go while trying to stay a daywalker, so it might be time to consider the nocturnal life. And real talk, it's wiser to plan for the switch and take steps to mitigate the impact on your work/ social life than keep on pushing yourself to breaking point and having your body just nope out completely, presuming you're not there already. Yes, it's horrible to live permanently out of sync with everyone else. This disorder is disabling. And, sleep deprivation will kill you. Disabled is better than dead.

It may be that switching to day sleeping will take enough of a load off your body that your medication regime can start helping again. Or, it may become clearer which meds do not do shit for your actual problem, and that is possibly all of them. It seems like they were originally intended to help you fix the "not sleeping at night" problem more than the "not sleeping" problem. Letting go of the need to force a normie schedule may mean you don't need medication to get your full sleep anymore, even if that sleep is kinda crap at first. Revolving through so many meds at once may be having unintended paradoxical backlash effects, like rebound headaches after using painkillers for headaches. I get you've been doing the regime til now cos it was working, but it may have worked so well for so long by instigating pure chaos in your chemical sleep architecture. Nobody knows why our weirdo biology does its thing so weird. And no one truly can predict what medication is doing to our weirdo biology. Crappy unmedicated sleep may therefore be more stable or at least have fewer chaotic factors to account for than forced but unreliable medicated sleep. Your apparent 8am sleep time may not even be your actual sleep time, underneath all these competing elements. It's possible light therapy could be effective later if your circadian rhythm could actually settle into a rhythm now. Even Non-24 is a rhythm, kinda. There's just no real control we can leverage over any of this forever unfortunately. As you've experienced, even the strongest levers wear out eventually. And we have to go back to what we are, the ones left rigidly awake til asshole o'clock, sleeping in til our bitchass "dawn". 😅

[u/bad_ukulele_player → u/thee_body_problem]

I can't tell you how much I appreciate your response. So much wisdom and straight talk. My sleep doctor is all but silent on the subject. I'm pretty much suicidal at this point. So, it's either that or being a complete nite owl. My fear is that if I do fall asleep really late, I'll never be able to phase advance my circadian rhythm. It's taken years to whittle down my wake up time from noon until 9:30 am. I was so proud of myself. To be or not to be. That is the question.

[u/DiminishedGravitas → u/bad_ukulele_player]

You need to listen to yourself for a minute. Living as a night owl surely beats the hell out of killing yourself, and for what have you been torturing yourself for? Over someone else's idea of proper bedtimes?

You cannot change who you are any more than you can force yourself to fall asleep. Time to accept the cards you've been dealt and do the hard work of building a good life around your strengths, instead of your limitations. The world is full of great people who don't give a good damn about 9-5 business hours and it is time for you to become one.

[u/thee_body_problem → u/bad_ukulele_player]

Ah friend, I wish such great things for you, peace and rest and gentle joys. To fight your biology this hard for this long is truly an achievement, your strength and dedication are so admirable! It's hard to lose the thing that gives you pride. And, there is pride to be found on the other side, the pride of letting go with honour of what can no longer be and becoming something new instead. If a loved one came to you faced with nightwalking or death, would you really prefer them dead? Or would you join in building them a life where nightwalking can bring them the self-kindness and peace and rest they have been needing for so long? We all deserve the chance to build that life for ourselves. You have earned it ten times over. And though I can't promise your fear won't come true, I can promise there's space for that fear and so many other gentler things to all be true at once. To be this and that and everything in between, that is the way.

[u/bad_ukulele_player → u/thee_body_problem]

Absolutely beautiful. This brought genuine tears. And I don't cry. Thank you, kind stranger.

[u/like_4-ish_lights]

This suggestion is going to depend a lot on your living situation, fitness, and general health, but: if you can find a way to get out for a week or two camping, it can do a hard reset on your circadian system. Most people sleep poorly the first night or two, but the combo sleeping outside plus hiking/rowing/other hard physical activity during the day does wonders for both my insomnia and my late sleep schedule. Even just sleeping outside in the yard during the summer tends to really really help me stay on a more normal sleep schedule.

[u/bad_ukulele_player → u/like_4-ish_lights]

I'm very sick with ME/CFS and Long Covid on top of my insomnia and DSPS. I would LOVE to go camping and do the reset but since I don't know my DLMO and minimum core body temperature (nadir), I don't want to further mess up my sleep with too much bright light. ALSO, I cannot for the life of me find a single friend to go camping with. I've tried!! It would be so fun to go camping with a bunch of people with DSPS to try to reset our circadian rhythms. If I felt better I'd try to organize a trip. I wanted to set up a tent in our back brick courtyard but not sure how well I'd comply with the house right there.

I'm so scared if I take nothing I'll never see daylight again. And I don't know if I'll be able to sleep 9-10 hours (what my body needs). I think it will never be more than 4 hours tops.

[u/like_4-ish_lights → u/bad_ukulele_player]

I'm so sorry. Must be awful having both CFS and insomnia. I really hope you're able to figure something out that lets you get some quality rest. Hopefully someday you can find that friend to camp with and give it a shot!

[u/throwaway-finance007]

The best advice I have for you is to find a really good sleep medicine physician, who is compassionate and collaborative. You may need to meet a few before you find someone you click with.

Light therapy and dim lighting at night are key, but working out the timings for that is not trivial. A sleep doc can help you with that. I’m messaging you the name of my doc who has been wonderful. You can do a telehealth appointment with him. If asked, just say you’re in my state, but no one typically asks.

[u/bad_ukulele_player → u/throwaway-finance007]

Thank you... again.

[u/Competitive-Blood507]

I'm so sorry that I don't have any advice for you but I can absolutely tell you that you are not alone. My current schedule is identical to yours. I'll just lie there awake until 9~10 am.

I've been off and on meds since I was an early teen, and was also put on benzos. The problem was I wasn't informed of the physical dependency and just kept being prescribed more and more and more. If numbers talk about this isn't allowed I'll edit my post, but I was on 8mg of clonazepam at one point. That's 160mg of valium, for reference.

My dspd has gotten so much worse since I began my taper. I got from 8 to 6mg on my own, nobody would take me as a patient due to how much I was on.

Last December, I finally got a psychiatrist who is tapering me off safely, and it's still messing with my dspd. I'm on other meds, one of them is trazodone, and it's also hit or miss for me. I'll get a tiny window of time where I get drowsy and if I don't stop and jump into bed within 20 minutes, it'll wear off and I'm stuck awake again. I can take it and melatonin and a large part of my taper consistenly at the same time, use light therapy, vitamin d, better sleep hygiene, the whole thing, and I will still slide back to 8-10 AM no matter what.

You're right. It sucks. I can't function on anything less than 9 hours of sleep, and I'm basically constantly just sleep deprived laying in my bed. I'm on a years long wait list for a sleep study, but I know the best "treatment" is to just accept it and work with your natural schedule... ..which is fine, unless it's as bad as ours are.

I wouldn't wish this on anyone else, but you're not alone right now.

Edit to add that I did the math, and I'll be tapering off benzos for the next 6 to 8 years if I want to do it safely. I get your struggle and am stuck there for at least a decade right now.

[u/bad_ukulele_player → u/Competitive-Blood507]

If you ever want to talk about it, I'm here. DM me if you'd like. I'm glad you're on a slow tapering schedule. Thanks for your support. I don't want you to suffer but it is comforting to know I'm not alone.

[u/Azrai113]

After reading a bunch of comments, I guess I don't get why you are still trying to fight your body? It wants to sleep all day and be up all night. What's wrong with that? Why do you feel the need to drug yourself into submission to an arbitrary schedule (days) when your body is fighting so hard against it that you are bedridden?

[u/bad_ukulele_player → u/Azrai113]

I hear you. This is a battle I'm fighting with myself. On the days I feel okay (dealing with ME/CFS, Long Covid too) I want to be out and about within my energy envelope. I love taking drives in the country, going to cafes, art museums, thrift-shopping, taking photos, exploring. These things make up who I AM. If I sleep all day and am up all night, I will be in a quiet house on my laptop. I'll spend just a few hours a day with my husband and that's it. I am not ready to say goodbye to sunlight. What I think my next steps will be are to do a dim light melatonin onset (DLMO) test to determine when melatonin is released in my body. And I will determine my body's natural wake time by determining my core body temperature minimum (nadir) which is 1.5 hours before my body's ideal wake time. Unfortunately, the only way I can determine this is by using a rectal thermometer! UCK! If these tests determine that I am indeed a complete night owl, I'll follow my body. My great hope is that my natural sleep cycle will be more or less as it is now - about 1 or 2 am until around 11 am. Then, knowing this, I'll have to get to the bottom of my severe insomnia and figure out a way to go med free eventually. I am currently withdrawing from an SSRI which could one of the main causes of my severe insomnia. Plus, Long Covid is notoriously bad for sleep. Sorry for the long answer. It's all so hard to figure out. I admire people who sleep days and thrive at night. If I were young and single I'd take full advantage of that and all the nightlife that is in nearby San Francisco. But, I'm older and sick. Re-reading what I wrote, I may be at the bargaining stage...

[u/_Blackthorne]

Hi, just throwing out a some ideas (apologies if they’re all things you’ve considered/tried), have you seen a neuropsychiatrist at all? I’m thinking a sleep study/brain scans may be helpful? Or possibly reaching out to neuroscientists specialising in sleep? Universities and medical research institutes could be a good place to start. I’ve had problems with sleep my entire life also, though not to the same degree and I can only imagine the despair and deep frustration you must be feeling. Just a reminder to be gentle and kind to yourself today, and I hope you’re able to get the rest and peace you deserve in the near future.

[u/bad_ukulele_player → u/_Blackthorne]

I appreciate your response! I would love to see a neuropsychiatrist or even neuropsychopharmacologist because of the complexities of my sleep med history. I would love to be studied - especially with an fMRI. I haven't found any studies, let alone in my area. I so appreciate your words of encouragement.

[u/_Blackthorne → u/bad_ukulele_player]

It may still be worth contacting some even if they’re not close to you, they may be a good resource for recommending something/someone closer to you possibly or have other suggestions that are worth exploring? Don’t give up hope, advocate for yourself strongly, you deserve to live a full and healthy life!

[u/bad_ukulele_player → u/_Blackthorne]

thank you!

[u/exclaim_bot → u/bad_ukulele_player]

thank you!

You're welcome!

[u/insufficient_nvram]

Did I write this? Are you my sleep-deprived, imaginary friend? I am Jack’s insomnia.

[u/bad_ukulele_player → u/insufficient_nvram]

I just made a quick comment to a post you wrote.

[u/ToxoplasmoticBite]

Sounds awful. Yeah, I'd guess that quitting all meds would leave you in an awful place of not sleeping at all for days if not longer, so I can understand being terrified of that. I can't really presume to have an answer here. My go-to self-treatments are dark therapy and also, when I need it, cannabis. Have you tried THC for insomnia yet? Are you in a place where it's legal? If you do try it, I'd suggest starting very slow with a single puff about 2–3 hours before you want to sleep. Don't overdo it.

[u/Catladylove99 → u/ToxoplasmoticBite]

FYI, there’s limited data on the efficacy of THC for sleep disorders, but the data we have doesn’t generally support its use. Over time, it can do more harm than good.

[u/bad_ukulele_player → u/Catladylove99]

if people take it a few times a week, i think it's safe. the risks are outweighed by the risks of most sleep meds which are anticholinergics, especially for aging people like me. weed works on the endocannabinoid system, one of the sleep mechanisms. as i mentioned above, i can't use it because it's too psychoactive for me.

[u/ToxoplasmoticBite → u/bad_ukulele_player]

Yeah, that's the thing. Data is still extremely limited, and what we have so far tends to pay little attention to dose size, timing, and frequency despite it being pretty well understood that THC has a U-shaped dose-response curve. We'll find out more someday. Well, whatever. Seeya, guys. Good luck to you both.

[u/Catladylove99 → u/bad_ukulele_player]

Yeah, most sleep meds are not safe for long term use. There are a few, like trazodone, that can be, depending on what other meds you take and your medical history. I take a very low-dose melatonin daily. It doesn’t work like a sleeping pill, but it does help to regulate my sleep schedule somewhat.

[u/bad_ukulele_player → u/Catladylove99]

you're fortunate. i get very depressed on melatonin. i started the sleeping pills, as i mentioned, to fall asleep at a reasonable hour so I could have more daylight. i regret taking my first sleeping pill. it's one of the biggest regrets of my entire life. and i regret staying up late in the 1990s to work on a sign i was painting at the time. that damn sign is the main reason i have dsps. i had no idea staying up late day after day to finish it would cause DSPS. oh well, i made my bed, now i'm lying in it.

[u/Catladylove99 → u/bad_ukulele_player]

For what it’s worth, you can’t give yourself DSPS. It’s genetic. So either there’s another cause for your chronic insomnia, or else you’ve inadvertently reversed cause and effect - in other words, you stayed up late because of DSPS; you didn’t cause DSPS by staying up late.

[u/nightowlclinic_ → u/bad_ukulele_player]

You can't develop DSPS from staying up late. It's genetically hard wired. So people either have it or don't.

[u/bad_ukulele_player → u/nightowlclinic_]

I've had a mild form of it since I was a little girl. But I always had "anchors" like school that forced me to wake early. On the weekends I would sleep in. These anchors lasted until my early thirties when I was laid off from a full time job. I slept in until 9 and it was almost... orgasmic. It felt so good. My body felt refreshed and energetic. Instead of finding a job at 8 in the morning, I chose jobs where I could work later and soon I couldn't get up before 10. I tried for a while but had to sleep on my lunch hour at work in the conference room. Then getting up at 10 became too hard and I became a sign painter so I could set my own hours. I felt my best at 10 pm and spent the evenings painting and watch late night comedy shows. Soon I was getting up at noon. And then stayed that way for many many years. "shoulda kept that anchor" my sleep doctor said. shoulda woulda coulda.

[u/ToxoplasmoticBite → u/Catladylove99]

Yes, I'm fully aware.

[u/bad_ukulele_player → u/ToxoplasmoticBite]

yes, it's legal here. the best is a ratio of 1:1 indica to CBD. even on the smallest dose or puff I get high as a kite for at least 8 hours. my mind goes on overdrive and not in a good way. i envy those who are able to sleep on it.

i'm glad you understand the predicament I'm in. my friends and family are exasperated with me.

[u/ToxoplasmoticBite → u/bad_ukulele_player]

God, I know. It's always a bummer to have a serious issue like this which is pretty much invisible to other people.

A lot of people seem to swear by the 1:1 ratio. Adding CBD was mind-blowingly awful for me, though. It intensified the high immensely and shortened my sleep as well so that I was sleeping 3–4 hours a night. My mind goes into overdrive, too, if I use higher doses. I use pretty much the smallest doses I can manage of sleepy strains, and that works well for me as needed. Anyways, sorry I couldn't help much. Good luck.

[u/bad_ukulele_player → u/ToxoplasmoticBite]

thank you.

[u/ditchdiggergirl → u/bad_ukulele_player]

As typed the sentence (indica to CBD?) doesn’t make sense - did you mean 1:1 THC to CBD? Have you tried CBN? I use a 1:1:1 THC:CBD:CBN gummy (I don’t smoke due to asthma) and I find it helpful. But there are formulas that are much lower THC that might work better for you - both CBD and CBN reduce the psychoactive effects of THC.

[u/bad_ukulele_player → u/ditchdiggergirl]

yes thc:cbd i said indica because some people accidentally use sativa which is more stimulating. i can't use ANY pot. even a tiny dose of delta 8 makes me super high for about 4 hours. frustrating. CBN and CBD do nothing.

[u/TulipsLovelyDaisies]

Is it cyclical? Ie. Insomnia for a few months or weeks and then it resolves?

[u/bad_ukulele_player → u/TulipsLovelyDaisies]

it used to be mildly cyclical. i'd always have insomnia but every few weeks it would get a bit better for a week or so. i've ruled out non 24. last summer i took the sub q peptides epitalon and pinealon to try to phase advance my circadian rhythm. that royally screwed me up. now, except for the two days a week i sleep okay, i wake up 2 to 5 hours early. these are the days when i'm bedbound. they didn't phase advance my sleep time, only my wake time. destroyed me. i just stare off into space. feeling that way now. like i'm in a semi-vegetative state watching my hands type words. i feel like my body is shutting down.