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this post was submitted on 02 Jun 2024
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Sorry to piggyback onto your comment, and I know you can't give medical advice, but I wonder if you have any insight into a problem I have with sleep.
I'm early 40s now. One of my earliest memories, aged around 4, is not being able to fall asleep. I've tried EVERYTHING over the years. Sleeping pills are a guarantee if things are getting squirrelly, but give me severe rebound insomnia the next day. When I do fall asleep, it's like I can sleep for way longer than is normal (so either cause of sleep debt or poor sleep quality).
I've always joked that maybe I should be on a planet with a 28 hour day. But I also know that my lack of normal sleep is potentially storing up huge problems like increasing my risk of cancer, heart disease etc.
Melatonin kind of helps. But no matter what I do... My sleep pattern goes out of synch.
I've gone through school, 'normal' 9 to 5 jobs, relationships, all a big struggle as I have to perform at a normal level despite not having slept for 24+ hours fairly regularly.
I can do everything 'right' (no light in the evening, exercise, healthy diet, no excitement in the evening, no caffeine, mild sleep supplements) and still find myself unable to sleep. What the frick is wrong with me... Am I doomed to continue like this? I just want to sleep like a normal human being!
You're right, I can't give medical advice. But having abnormally long or short circadian days is a known thing - called circadian diseases. It's not really my specialty, so I can't comment too much on it, but my understanding is that many of them are genetic. These genetic variations can cause the circadian clock to run slower or faster than normal (which happens to be adjacent to what I study, so I can talk about it in excruciating detail if desired)
The Familial Advanced Sleep Phase Syndrome (FASP) is one such genetic circadian disease that gets a lot of attention among the circadian field, but you almost certainly don't have it, since FASP makes your clock run shorter than 24 hours, whereas you seem to imply that yours runs longer.
The key thing to remember is that the circadian clock is not psychological. There is an actual, physical, molecular clock running in your brain and in nearly all the cells in your body. If this clock has imperfections, then that will directly lead to consequences in your circadian rhythms and your sleep cycle. The circadian clock is a real thing that people with the right equipment can measure and read. It wouldn't even be particularly hard - just a blood sample or a swab would be sufficient. To be honest, I myself would like to study your cells to see if there really is anything out of place, but that would probably break so many research and ethics rules.
Anyways, to answer your question, I would recommend getting a medical opinion - it might be worth specifically bringing up that you suspect you have a circadian disease. I'm not too sure about treatment options, since my impression has generally been that we kind of don't have any treatments for circadian diseases. But it's not really my specialty, so maybe there is. My memory is that melatonin is a masking cue, which basically means that it makes you sleep but it doesn't actually affect your circadian clock (which probably explains your poor experience with melatonin).
Thank you so much for the detailed response, I really appreciate it. Over the years I've looked into this a lot but you've given me some really useful new information!
Health care in the UK, especially for lesser known genetic diseases, can be a bit of a lottery... I moved up the country 6 months ago, and within a month had been tested & diagnosed for a generic mutation called FMF (familial Mediterranean fever). My dad / sister both have it but despite nearly a decade of requests I was unable to get a doc to investigate it. So far up here the gp response has been a referral to a website for cognitive behavioural therapy.
I'll push on though and see if there's anything more they can investigate. Thanks again for the info :)
I have the exact same thing.
Ever heard of
https://en.m.wikipedia.org/wiki/Delayed_sleep_phase_disorder
?
We had a community on Reddit which I kinda miss, really small there as well but I'm not going back for it.
Thanks, I do suspect I have delayed phase sleep disorder. It's good to know I'm not alone. Do you have any coping strategies?
My coping strategy is 'modafinil to keep me from not being a zombie when particularly sleep deprived', and 'zopiclone for if I have been up longer than I should and it's early enough to push me back into normal sleep pattern'. But of course I'm very wary about doing that more than twice in a row, so it's never enough to establish 'normality'.
I don't, unfortunately.
I'm a shell of a human, haven't been properly employed for some years, never managed a "normal" schedule or any kind of routine really. I used to have a shift job, but then that became impossible to do as well. In the army I got myself a role that allowed me to shift my personal schedules quite a bit.
But yeah, no, it has ruined my life and ever since I told tve doctors I tried weed as a coping strategy (for sleeping and eating, it's good), I can't really get any help from the public doctors, since I live in such a backwards country that weed is still comparable to doing iv-opiates basically.
I take melatonin and zolpidem. Melatonin around midnight so it would always be the same but ambien when I go to bed.
Doesn't really help.
If I lived ina country with less social secvurity, like the US, I probably would've ended up on the streets several years ago. I'd probably have killed myself or some other people by this point.
Now I'm just a wreck of a person waiting of some moronic bureaucratic bullshit while everyone else gets to have a life and I don't.
Tbf mine might be "non-24 and not just a delayed sleep-phase", but despite me now having actual sleep data from more than 6 months, I can't even get the sleep studies place to accept my doctors referral there. Makes me so fking angry I'm gonna have a seizure again
I'm so, so sorry to hear this.
I feel really lucky that I get some government support because I have autism / bipolar. It's not much, but the specific benefit I receive also allows me to do some work... and I'm also very lucky to be self employed in a field I enjoy (writing music). So I'm certainly not rich or even that comfortable, but it does allow me to morph my days and nights to suit my unnatural rhythms.
One thing I find about lack of sleep... it makes me really emotional, grumpy, increases likelihood of a depressive state. For me, it's SO important to almost literally inject happiness. If we have a condition that takes away our happiness, it's really crucial to create happiness in any way possible. Binge funny TV shows, go for a walk, watch some standup comedy, call a friend (not at 2am unless they're also a night owl haha), make some art (doesn't matter if you're good at it), try learning a new skill, play a game, join a volunteering group. Those are my go-to activities, probably different for you.
Also, and I know it'll sound trite, but I got into a couple of things during lockdown that made a big difference to my overall happiness; Buddhist and Stoic philosophy. I'm not a Buddhist, probably never will be. I definitely have a long way to go in applying Stoic principles. But they have really improved my life. Meditation is very hard at first but incredibly beneficial. If I could recommend a couple of books (one is an audiobook and for me was more transformative than Buddhist principles)... if you've never used Audible, you can sign up for a month trial and keep the audiobook you select, no charge if you cancel within 28 days.