I've gone nocturnal again :(

Warning - This is just a massive rant and a major whinge.

I've had sleeping problems for close to 50 years. School, university and work were years when I was almost permanently sleep-deprived, struggling to wake up because I usually slept from about 4am (if I was lucky), and then had to get up 2 or 3 hours later. I would struggle to stay awake all day, then evening would come, "sensible" bedtime would approach, and then *ping!* I would finally wake up, be alert, and want to do things.

People would tell me if I kept going to bed at a "sensible" time and forcing myself out of bed at a "respectable" time then eventually I would want to sleep at a respectable time. This, as far as I am concerned, is a myth put about by early risers, parents, and doctors. It was never true for me.

When I was a child my parents were determined that I was going to sleep like sensible, respectable people. I was sent to bed at 9pm - 9.30pm every night (until I left home at the earliest opportunity). My sister (who I shared a bedroom with) would go nuts if I put a bedside light on to allow me to read. My parents would go nuts too, if they saw a light on under the door. So I would go to bed every evening, and then spend up to 6 hours just lying in bed, going absolutely crazy with boredom. I remember how painful it used to be, just lying in bed for so long, in the dark, with absolutely bugger all to do. I hated going to bed every night because I associated it with boredom, misery, depression, and pain. And this went on year after year after year.

When I was at university, and lived away from home, I had my first ever opportunity to sleep when I wanted to (at least for some of the time). I discovered that, left to my own devices, I could sleep for 18 hours on the trot without waking up once. Then I might stay awake for 6 hours or so then sleep for another 18 hours. Then I might stay awake for 2 or 3 days without sleeping at all, then the cycle would repeat. Over time these extremes did reduce a bit, but even now, most of the time my body naturally seems to want me to be nocturnal.

Working was a constant nightmare. The number of sadists there are in the working population is incredible. So many people want to have meetings at 7.30am or 8am in the morning. Why? What's wrong with 3pm, when both early risers and late risers are more likely to be awake?

But of course, anyone whose sleeping habits make them naturally late risers is considered to be the lowest of the low. I'm assumed to be lazy scum. My sleeping habits are assumed to be a choice!

Why the hell would I choose to be the way I am? Why would I want to sleep during the day, and stay awake at night when it makes my life so difficult and miserable?

There is also a common belief that I have come across in connection with sleepers like me. People assume that I'm lying in bed awake and doing nothing. They assume anyone who is in bed at 10am or noon must be awake and must be choosing to stay there. I HATE lying in bed and doing nothing. I had to do it for many years as a child and it is PAINFUL! As a general rule of thumb throughout my life, once I wake up I get up. If I'm awake I struggle to stay in bed even when, for health reasons, it would be to my advantage to stay there. Anyone who has to stay in bed because they are too ill to get up has all my sympathy.

So, bringing this all up-to-date, I had a respiratory infection or flu or something like that which started at the New Year and I'm still coughing now. I had been doing reasonably well with my sleep during November/December, but since being ill my sleep has been disturbed and I'm almost wholly nocturnal again.

I hate being nocturnal and always have done, but the older I get the more I hate it. It's January, it's winter, it's dark, it's the middle of the night, the heating isn't on, the house is very cold, there's nothing to do apart from really, really quiet things that won't disturb my husband or the neighbours. I have nobody to talk to and I'm lonely. I won't go out at this time of night. Where would I go? Tesco? What fun.

I've decided to do something I've done with some success before... I am going to stay awake a little bit later every day, until I eventually want to sleep at 10pm or 11pm. Then I will have to start using rigid discipline to make sure I continue to go to bed at the same time. Something always happens to disturb this plan eventually, but I'll keep it up as long as I can.

Today I slept from roughly noon to 8pm, so I still have to move my sleeping hours quite a bit. With luck I will have achieved this within about two weeks.

/end rant

 

I’m very sorry about your sleep patterns, it must be very difficult to live with. Have you been tested for sleep disorders ?

I hope your strategy works as you hope. It makes sense, so I think it should work. Hang in there !

 

Too bad you're having such difficulty, @Arnie Pye . There's nothing worse, seems to me, than sleep troubles. They seem to prompt such frustration and misery. I hope you can come to a place of comfort soon.

 

To the best of my knowledge, sleep disorders are tested for during the night at sleep clinics, so it wouldn't work for me. My husband tells me I do snore, but not that often and it isn't very loud, and he has never noticed me stopping breathing. So there probably wouldn't be that much to find even if the sleep testing was successful.

 

I am waiting for a polysomnography. This doesn’t test for sleep apnea only, but also for many sleep disorders. It can also be done during the day if this is when you sleep. Maybe they would find something they can help you with ?

https://en.m.wikipedia.org/wiki/Polysomnography

 

Thanks for the info. I've never heard of polysomnography before. I should investigate what sleep clinics actually do before jumping to the conclusion that they only test for sleep apnea and only test at night!

I don't know what options are available to people in the UK under the NHS, nor how much it would cost to go private, but you're right, I really should look into it properly.

 

You have my utmost sympathy. I've had sleeping difficulty for most of my life, but probably not as bad as yours. Like you, my parents made me go to bed at 2100, I think, so I missed all the good TV progs that the other kids discussed. I had little enough in common with them as it was! I couldn't sleep that early, so I used to listen to my transistor radio, to the pirate stations. Kenny Everett & Dave Cash were my highlights, and I found them hilarious.

Do you have any digestive problems, I wonder? My sleep improved after I gave up gluten.

 

Hi Arnie Pye,

Sorry to hear about your struggles with sleep. I came across this video yesterday and thought it describes many PWME´s situation, including mine, quite well. The disturbance of cortisol release seems to be the cause of how our sleep pattern ends up. There is no simple solution but I think it helps to know why this happens, and that it is a common part of ME. Maybe there is some better sleeping medicine available since 2012, when the video was recorded.

https://www.youtube.com/watch?v=Mzt9hisY404

 

Are you sure you wrote this and didn't extract it from my brain somehow

Yeah i'm about the same history, i was also practically nocturnal. That said my journey to ME/CFS diagnosis went through many sleep doctors because it was the most apparent symptom at the time. I have something called non 24 hour circadian rhythm disorder (i suspect its ME/CFS related, doc doesn't agree but thats another discussion). In my case my sleep time moves forward about 2 hours a week (non linearly) and cannot be affected by any of the standard sleep treatments.

Ive had many sleep studies and seen many sleep experts so have learned a few things. Morningness and eveningness is genetic. Nothing available can change that. That said "normal" morningness or eveningness is slightly malleable, they can work on the "wrong" schedule with difficulty (not our level of difficulty, just with discomfort). Those with other circadian disorders typically cannot. That being true you may have delayed sleep phase syndrome, non 24 hour circadian rhythm disorder or what i call ME/CFS sleep disorder. your symptoms sounds a lot like DSPS, which is often treatable with proper use of melatonin, blue light blocking glasses, full spectrum light (properly timed, very important to get the timing right) and modified sleep hygiene (the bad word, but adapted to your condition). If it does not work its because you probably don't have DSPS, my symptoms sound like i do but i don't. It was very hard for any doctor to accept that i had the "classic" DSPS symptoms but did not respond to the treatment, to them that meant tweak it instead of look elsewhere which is what had to be done. It wasn't until i was unable to work from ME/CFS and started sleeping when i needed to for many months that this pattern emerged. Actual non 24 hour circadian rhythm disorder is genetic, people with it have sleep cycles longer then 24 hours so while their sleep time moves everyday they are on a consistent schedule but on that is longer then 24 hours, It seems to be individual to each patient, 24.5 hours, 25 hours, longer, whatever that patient has. I have had to figure out what works and what does not work, but i have found my sleep pattern gets longer the worse my ME/CFS gets. This should not happen in non 24 so i suspect i don't have a genetic non 24, i have some kind of abnormality caused by ME/CFS. No way to be sure till there is a treatment found and see what happens.

There are places that do "daytime" sleep studies and it is very worth getting a proper study done, you need proper testing to rule out the classic sleep disorders. They can cause the symptoms you mention, sleep apnea for instance is not always caused by snoring and it can screw up your body clock like crazy in some cases. Ruling out the classic disorders is low hanging fruit and if you have them its a blessing because most are treatable and you will wonder why you waited so long (or why the gods were spiting you for so long). That said your profile says UK, i don't know how common day sleep labs are there, here in Canada they are not common but do exist an can be found with a lot of persistence.

My suggestion is get a sleep study done, find a place that does a day study if you can. Then if they rule out the standard disorders you need to figure it out yourself, i wrote a long post on this at the other place. First i would start with sleeping when you want for how long you want, let this reach a steady rhythm. This will dictate where to go next, assuming you have the luxury to try it. If your interested in more info on figuring this out and treating it send me a PM.

 

Maureen Hanson‏ @DrMaureenHanson
ME/CFS patients feel like their circadian clocks are disrupted. https://tinyurl.com/y7oodfo4 . More research needed to find out why.


18:52 - 2 okt. 2017

 

Like you, I have always had some issues with sleep @Arnie Pye & @MeSci. Maybe not as severe, but I could be up for a couple of days. Then, given the chance, I'd sleep like the dead - they actually couldn't wake me.

There were panes of glass over the tops of the bedroom doors in the house I grew up in. Difficult to sneakily switch the light on to read. Luckily, it was a bungalow & I'd wait till everyone else was asleep and climb out the window.

Lovely, long, moonlit country walks .. I still use those memories today, when I'm not well enough to get out of bed,but desperately need to get out of my own head. Does that make sense?

Harder, but not impossible, to do in the rain. Higher risk of having damp coat discovered.....

 

I loved your description, @Arnie Pye ! Thank you so so much. It is a rare gift to have a glimpse into the actual experiences of those of us with this hidden, unknown condition. The intransigence of your sleeping problems is a key feature, in my view. It is of course worth trying to bomb it into submission with enforced “normal” practices, “sleep hygiene”, they call it in the U.S. (a term I hate) as well as supplements and drugs to see if any of those can help. My insomnia is intransigent too and has caused a great deal of misery though it is not as extreme as yours. (I have gotten help from Trazodone, Tryptophan, N-Acetyl Cysteine, Gabapentin and Clonazepam in different combinations at different times, but expect that everyone’s armamentorium will be different.)

What I have come to conclude is that the standard medical views and approaches do not apply, or entirely apply, for the intransigent difficulties that people with ME very often have.

I was interested in a talk that Dr. Alan Pocinki gave ( which is a Vimeo recording 35766364) called Clinical Autonomic and Sleep Disorders in Ehlers-Danlos Syndrome He was also interviewed on ME/CFS Alert episode 51, but the information there isn’t as specific as he gives at the EDS conference. Anyway he also works with patients with ME and gives top priority to the insomnia. The role of autonomic dysfunction as shown in heart rate abnormalities during sleep, is one of the ways his sleep studies are very different from the standard ones which focus on other stuff—sleep apnea and restless leg syndrome. The autonomic dysfunction keys in cortisol, etc. Pocincki thinks that treating the background pain is also key in settling down a disturbed pattern.

Don’t know if that is helpful, but really the main point is that there are other issues involved than the usual ones that the sleep specialists may look for and treat. So even if you did have a sleep study done, it might not even help because they’d be looking for particular issues that might not apply or be at all sufficient to your case.

I realled valued reading in your account about the times and ways you have respected your system and gone with your needs, however unusual, when you have been in circumstances in which you could, because I feel that self respect is the beginning of wisdom. There is value in what you shared with the rest of us and it is not “just whinging”, which I’ve heard is definitely frowned upon in English culture. But this here is an international forum and we have broader norms of acceptability, so “tell it like it is”!

 

Oh yes, missing TV was very annoying, particularly once I got to being an older teenager. I've always struggled for small talk, so cutting off lots of TV was really bad news for me.

Regarding being sent to bed at 9pm, I just had a thought. How would 17 (nearly 18) year olds today react to being sent to bed at 9pm? I don't have kids myself, but I can imagine it wouldn't go well. (Understatement of the year.)

I had poor digestive health for years - the diagnoses have varied - severe indigestion, duodenal ulcer, IBS, oesophagitis (inflamed oesophagus), gastritis. I was tested for coeliac disease during an endoscopy, and was told it was negative. However, I did eventually give up gluten as an experiment and it was a big success for several reasons. I've been able to keep my nutrient levels up a bit better than I used to and my severe indigestion has much reduced.

I'm now in my late 50s and I would say my sleeping has actually improved in the last 5 years - but I would still classify it as absolutely awful. I think giving up gluten has helped my sleep a bit and so has improving my nutrient levels. But I think the biggest contributor to my improved sleep has been treating my hypothyroidism. I think I've been hypothyroid since childhood. Another factor is mucked-up adrenals - my cortisol levels are (or were) too high when tested some time ago. And I have lots of symptoms that I associate with excessive adrenaline - erratic heart rate, tachycardia, palpitations, erratic temperature control, sweating a lot for no obvious reason. I've tried various treatments for high cortisol (adaptogens mostly), but I haven't had a lot of success with them.

 

Thanks for the video, Helen. I was interested in the comments about blood flow in the brain. I haven't yet been diagnosed with ME (I'm not convinced that a diagnosis would be to my advantage to be honest), but I do have a lot of health problems and it is possible that the combination of them is, to some extent, mimicking ME. I have untreated hydrocephalus, the doctors think I've probably had it all my life, and it stabilised itself in childhood. I would assume that could easily have an effect on blood flow in my brain.

 

I've never measured how much my sleep time moves each week. It would probably be a good idea if I started keeping records on when I got to sleep, how often I woke up, whether I got back to sleep, and what times I actually got into bed and out of it. I've just thought of my sleeping as erratic (and soul-destroying) and left it at that. I did read about Delayed Sleep Phase Syndrome and Non-24-hour Circadian Rhythm Disorder some years ago, and thought it was very likely I had one or the other. I'm afraid I have so little faith in doctors, and they had so often refused to help me with my sleep, that I never followed up properly on DSPS or the Non-24-hour condition once I found out about them. I may have mentioned it - I have a vague memory that a doctor I mentioned it to had never heard of it, so it went nowhere.

I do take melatonin, but only once in a blue moon, and I have to be really desperate to do so. It causes me severe problems for reasons I cannot work out. I can take it once, and I will notice an effect on my sleep, and I'll be reasonably okay the next day. But if I take it on two or more consecutive nights I wake up severely depressed - and I mean really severely depressed. If I then stop the melatonin the depression will go in a few days, it won't hang around long. But the depression from taking melatonin is so bad that it simply isn't worth it apart from the occasional emergency use for one night only. Another effect of melatonin is a worsening of my permanent headache. Oh, I should also mention that I have 3mg tablets of melatonin that I break up into quarters (or as close to quarters as I can manage), and take just one piece as a dose.

I use f.lux on my PC and have found it really very helpful. I've thought about buying blue light blocking glasses for TV use or reading my Kindle in the evening, but haven't gone beyond thinking about it so far. I will order some this week, I've decided.

I do have a light box. It isn't a very powerful one, and as a result I have to use it for a long time each day to get much benefit from it. Spending 90 minutes every day just sitting in front of this thing got really boring and I gave it up. Perhaps I ought to try it again to see if I can make it workable and bearable for me. Unfortunately I have no idea what timing to be aiming for, and how I can find it out without many months of trial and error.

I'll look into sleep study possibilities in my area. I think I have zero chance of getting referred by the NHS due to budget cuts, but I will look into how much private testing would cost.

Thanks for your help.

 

I don't know why - I must have found some advice that I just can't remember now - but I only take melatonin on alternate nights (when I remember!). I take a normal dose. I think it usually works, but my health is very unpredictable at present.

 

Fair enough, perhaps the easiest is to find an app (assuming you have a smart phone or tablet) that tracks these then all you have to do is click sleep, awake, how long to fall asleep and it tracks the timings and lengths.

Doctors are very often useless
Fortunately DSPS and non 24 don't need docs to measure, get the numbers by sleeping when you want to and not forcing it and go from there. As i mentioned a proper study will rule out things that can cause circadian abnormalities, but to determine if you have an abnormality you can do yourself. Avoid caffeine and alcohol because they can screw up your measurements.
Also if its what i called ME/CFS sleep disorder they can't measure or fix it.

That is weird, but i have heard of several different side effects people have had. In the end DSPS can be treated several ways, melatonin/glasses/full spectrum light are the gold standard but not the only games in town. 1/4 of a 3mg tablet is 0.75mg, enough for most people, going above 1mg is useless so the dose is not a big concern in your case anyways.

Finding it really helpful is a good sign, blue glasses are not a monolithic thing, you want ones that block 95%+ of 480nm, they are orange lensed and can be very pricey or some are not at all. I believe consumer reports did some testing of cheaper ones a while back, if you can get the report i believe many are cheap. If you can't get the report let me know and i will try.

Its the blue component of the light that makes the difference (about the blue of the blue sky). Hence you can use daylight at the right time of your sleep phase, typically 8 hours after your circadian sleep time. That said 30 mins of 10,000 lux full spectrum is sufficient, saving you boredom time, but it needs to be 10,000 lux brightness. If you can't afford a new box (or think its a waste of money) go outside and use daylight (bright sunny day with blue sky) instead, and don't use sunglasses. You should notice effects in a few weeks, though if you don't have many sunny/blue sky days it can be problematic.

Its worth ruling out the classic sleep disorders, barking up the wrong tree is counter productive and wastes our limited energy. Try not to blow lots of money though.

 

This page refers to depression as a result of lower melatonin levels:

https://examine.com/supplements/melatonin/

"Depression has also been associated with lower melatonin levels."

I haven't heard about over 1 mg being useless before. The above page does say:

"For regulating the sleep cycle, doses of melatonin between 500mcg (0.5mg) and 5mg seem to work. Start with 500mcg, and if it doesn’t work, work up to 3-5mg. The benefits of melatonin are not dose-dependent - taking more will not help you fall asleep faster."

Which is a bit puzzling!

 

I find this is the difference between fishing and understanding how things work. We don't fully understand the human body but melatonin is not an antidepressant. That said i don't want to open a Pandora's box so i think its best not to get into this since this thread is about @Arnie Pye's sleep issues.

Technically that is mostly correct, after 1mg it may not make a huge difference, once the receptors are saturated more is useless, over 1mg will work, its just wasted, and according to a study posted in another thread too much sticks around and still has effects the next day.
I had dug greatly into the research years ago and been to many sleep experts, if your interested it is interesting to dig into, 1mg is actually more then we need but its metabolized so ends up about the same amount if we had no production. Its also very (circadian) time dependent, but thats a long discussion.

 

Hi @Arnie Pye !

Just a thought -
melatonin is thought to be the trigger of "winter depression" (seasonal affective disorder?). Because of the missing light during daytime in winter, melatonin is not broken down sufficiently. Result: depression. Now with your sleeping pattern you simply might not get enough sun light to break down all of the melatonin you took. When you take another pill the next day, the melatonin adds up and makes you drowsy and depressed...

It's 3:49 am here, I'm still not tired enough to go to bed. Outside the snow is falling, so no sunshine this day, too...