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Darkness therapy and light therapy for sleep

Discussion in 'General Treatment' started by Calathea, Feb 9, 2012.

  1. Calathea

    Calathea Senior Member

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    I've been meaning to post about this for ages! It's my Big Thing, the techniques I found which control the circadian rhythm problems I developed. I would really love to know how well they work for other people, as well as generally spreading the gospel of Blue Light And How You Can Mess Around With It.

    Firstly, I reckon this affects everyone in an industrialised society to a greater or lesser extent. If you're housebound, it's a far greater extent. Humans evolved outdoors, with strong daylight during the day and absolute darkness at night. Now we get weak indoor lighting which is only a fraction of the strength of outdoor light, and use artificial lighting after nightfall. It's specifically the blue part of the light spectrum which affects our body clocks, around 465nm. Blue light will stimulate serotonin and make your body think that it's morning if you get a good strong burst of it then, but the smallest bit of blue light in the evening will suppress melatonin production and keep you up late. Computer screens and TVs emit an awful lot of blue light, which is why they're absolutely diabolical for murdering sleep patterns. I'm sure many of us here have been happily chatting to someone online, and suddenly realised that it's 5 am, you're freezing cold, and you're far too wired to sleep. Melatonin is crucial stuff, and messed up circadian rhythms have been linked to various alarming things, such as sky-high breast cancer rates in shift workers.

    I've always been a poor sleeper with an odd sleep pattern, but a few years into having ME, I developed Delayed Sleep Phase Syndrome (DSPS). This is basically where your body clock is determined to run a few hours too late, so that you can't get to sleep earlier than 4 am, say. After a few years, this deteriorated in Non-24 Sleep-Wake Cycle (N24), which is where your body is running on a circadian rhythm other than 24 hours. It's a well-known phenomenon in people who are completely blind, with a cycle which is typically 25-26 hours long. Every day I would fall asleep an hour later than the previous day, which made my life completely chaotic and made it very hard to get a good long stretch of sleep at any one point without interruptions. Long-term sleeping meds didn't do a thing, including melatonin tablets. I reckon that the blue light I was exposed to in the evenings was counteracting the artificial melatonin, but who knows. I did find the odd sleeping med which worked short-term, but wasn't safe to take for more than a few days at a time.

    Eventually I discovered bright light therapy. I bought a good quality lightbox, the therapeutic sort aimed at people with Seasonal Affective Disorder (SAD), and started using it first thing in the morning, although "morning" was rather a relative term back then. My sleep pattern promptly stabilised at 24 hours. It didn't stabilise at a very convenient location, I still tended to fall asleep closer to the time most people are getting up, but it was a definite improvement. I was keeping sleep diaries that year so it was very easy to see the effects. (Although not for the sleep specialist I saw, at a clinic where the lab techs literally hadn't heard of circadian rhythm disorders. All they dealt with was sleep apnoea and narcolepsy, it seemed.) I also bought a dawn simulator, and found that it was fairly good at waking me up as long as I was on a reasonably regular schedule, and probably helped boost my sleep patterns a wee bit.

    A few years later, I stumbled across darkness therapy. This isn't quite what it sounds like. In some of the research, people were placed in total darkness for up to 14 hours out of the 24, but while it was surprisingly good at tackling rapid-cycling bipolar disorder, the researchers quickly spotted that it's not very livable and patient compliance would be an issue. (Although I think the main issue here is that there's no nice little drug to sell, which is probably why it's never taken off particularly well.) Then they realised that all you really need to do is to create virtual darkness by blocking or omitting all blue light.

    The cheap version of this involves buying a few light bulbs with yellow, orange or red coatings (solid coatings, please), and an orange gel filter to sling over your computer and/or TV screens (I picked mine up as a free sample from a theatrical lighting company). It's a bit of a faff, and in my case it was awkward because my partner has severe myopia and as a result is insanely sensitive to coloured light. The convenient version is to use glasses which block all blue light. There are various ways you can do this. Since I have to wear prescription specs, and found that wearing an additional pair of tinted glasses on top was horribly uncomfortable as well as looking distinctly creepy, I tried out the cheap methods until I was sure that they worked and then forked out for a new pair of glasses with an orange tint, 50% saturation. I put them on about three hours before I want to go to bed, and keep the lights lower as well. If I get up during the night, I am careful to avoid any blue light, which means that I have the odd red bike light around and have learned to go to the loo in the dark. I've also worked at lightproofing the bedroom with blackout blinds and such, since that's important too, especially in the summer if you're far enough to the north.

    I found that the effect was roughly similar to a good sleeping tablet for me. For the first time in as long as I can remember, I was getting sleepy at the time ordained by society, and in fact was annoying my other half by falling asleep halfway through an episode of something silly on TV, at the peculiar hour of eleven-thirty! With a bit of experimentation, I managed to set my sleep schedule up to match my partner's. I could now book appointments without worrying that I'd be asleep during them, and get my support workers to come earlier in the day. My sleep's far less likely to be interrupted by the phone, postman, my partner getting up and so forth, so between that and the melatonin hit, the quality is a lot better. Now that I'm on a fairly regular schedule, I've managed to get my mealtimes on a good schedule as well, which has helped various things such as blood sugar. Obviously it's not perfect, as it wouldn't be ME if you didn't wake up feeling like a dead rat, but it's hugely improved. Bad patches of sleep are now rare, and I will sulk about the occasional night of what to me is now poor sleep when in the old days, it would have been bloody fantastic by comparison. (And at the moment, weeks of poor sleep courtesy of gabapentin withdrawal, but it seems to be starting to settle down again.)

    I would love to hear from anyone else who has tried any of this or is interested in trying it. If you fancy finding out just how appalling your sleep pattern is, go and fill out the Morningness-Eveningness Questionnaire linked to below, as I'm curious to know how we all compare in this respect. Ignore the snooty little remark which may come up after two questions about how the MEQ wasn't designed for people whose sleep is as screwed up as yours; it's still a useful tool, even if you have to pick the closest answer and it's still a few hours off, not to mention pretend that you are capable of work and exercise and so forth. Sarcastic responses to questions such as "how would you feel if a friend suggested exercising at 7-8 am?" are welcomed. I originally scored 15, which is off the charts for eveningness, and now score 49, right in the middle of the "intermediate" section.


    Useful links

    In Search of Mornings - my personal web site which goes into all of this in a lot more detail. There's also a links page there with various useful places you can visit.

    Morningness-Eveningness Questionnaire - useful to find out what sort of circadian rhythm problem you have, and for monitoring progress. If you're anything like I was when I started, you'll be off the charts. Their advice for light therapy treatment times should be taken with a pinch of salt, however.

    Medhelp Sleep Tracker - reasonably good site for tracking your sleep patterns. Annoyingly, you can't track treatment times, which is sort of key with light therapy and darkness therapy. I ended up making a weirdly complicated spreadsheet graph to do that myself, which I am not even going to begin to explain as I don't think I can remember how I did it!
     
  2. Sasha

    Sasha Fine, thank you

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    How interesting! Thanks for posting in such detail.

    I live on my own so don't mind looking creepy at home in the evening (will frighten burglars as an extra benefit) so thought I'd get some tinted specs to wear over my prescription ones.

    I've found yellow-tinted safety specs on Ebay that are very cheap (2.20!) so will give those a go.
     
  3. Sasha

    Sasha Fine, thank you

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    Oh! Just had a look at your site and saw that any old yellow specs might not do. Can you recommend a UK supplier of specs to go over my prescription specs, pref. not too expensive!?

    I'm very low-energy with my ME so although lightbulbs, gels on the TV etc. might be cheaper, zero physical effort is important to me!
     
  4. Calathea

    Calathea Senior Member

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    The thing about lightbulbs etc. is it gives you a chance to try out the treatment cheaply before you spend money on prescription specs. Just one bedside light can be a start, if you're willing to spend a few evenings with no other lights or computers on.

    Optima Low Vision do a variety of tinted specs for medical purposes, many of which are marked as blocking 100% of blue light. They do free delivery and returns as regardless of your personal status, they're classified as items for the blind. It can be worth a try to see if you find the fitover ones comfortable. For prescription specs, just make sure they will do you a tint which will block 100% of blue light, which they should understand. You can buy a blue LED keyring light for a pound or two on eBay, so if you want to test tinted lenses to see if blue light passes through them, that should do the trick. (Blue LEDs naturally peak at exactly the wavelength in question.) I hear that Asda do fantastic deals for glasses, including tints and high index lenses free, although I haven't tried them myself. Mine were made up at Optical Express, and I think that while my optometrist recommended Wratten Tint 21 as a suitable orange, in the end I just gave them a bit of the orange screen filter I'd been using, they vaguely matched it, and they chose a 50% saturation as that's definitely enough to block all blue light. Brown would work too and you'd get less colour distortion than with orange, but it would have to be darker.
     
  5. lnester7

    lnester7 Seven

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    So I want to give this a try, I work on computers all day long. Just use the orange (blue light blocking ones) glass 3 hours before bed? or use it while working on computer all day long?? then at night again???

    Seven
     
  6. Calathea

    Calathea Senior Member

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    Just for three hours before bed. Well, three hours is what I've found works, and I think it's fairly commonly used, but it may well be a matter of trial and error. I honestly have no idea how well this works for all the people who try it, the research is rather limited. In theory it's likely to be useful, especially if you're one of those people who stays up late on the computer, but eh, anything goes when you have ME!
     
  7. Sasha

    Sasha Fine, thank you

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    Hi Calathea - thanks for that extra info! The basic specs even without prescription are 60 or so, which is expensive (you were right there!). I've ordered some orange gel filters from Ebay (1.80!) - I'll see if I can cut bits out and attach them in front of the lenses of my specs.
     
  8. Calathea

    Calathea Senior Member

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    Oh yes, I did that temporarily. It doesn't really work, to be honest, but it's fun to play with and it does give you a rough idea, and then at least you can hand in the gel filter as a colour sample if you do get glasses made up.
     
  9. caledonia

    caledonia

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    Calathea, this is really great information to know. Thank you for posting this. I had this exact same problem for many years. It cleared up when I took pregnenolone for several weeks (I had to discontinue when I had a very bad reaction to it, but one good thing that came out of it was that my sleep cycle stabilized for the first time in many years.) It's been pretty stable for about 6 months now.

    I have a feeling it will evenutally slip back into my old pattern; if so, I will try your method. I had already tried a blue light in the mornings without success.
     
  10. Calathea

    Calathea Senior Member

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    Out of curiosity, which blue light did you use, how long were you using it for, where was it placed, and how close to it were you? And what were you trying to treat with it? I found that a bright light stabilised my sleep cycle at 24 hours rather than 25 hours, but that was all. Which was still very valuable, of course, it just solved half the problem.
     
  11. caledonia

    caledonia

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    Calathea, sorry I did not see your question. I'm going to subscribe to this thread, or you can PM me if you want.

    I was using an Apollo Go Lite which about 6 inches square and filled with blue LEDs. I was using it for as long as I could stand it, I think about 15 minutes. I set it at about a 45 degree angle so I could watch TV but still have the light shining on my eyes. Basically, just trying to follow the instructions.

    I noticed it did make me feel more awake and alert, but that was about it.

    I think I'm getting enough blue light from the computer screen.
     
  12. caledonia

    caledonia

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    Right now I'm using some amber tinted clip on sunglasses I found laying around, and it definitely works. The problem I'm having is I can't see the computer that well, so I looked around for something better.

    I found this website: https://www.lowbluelights.com/index.asp? which sells glasses and light bulbs designed to block blue light. But the prices are a little expensive for my budget.

    These are supposed to be just as effective, but cost way less:

    http://www.amazon.com/Uvex-S0360X-U...ref=sr_1_1?ie=UTF8&s=hi&qid=1294788538&sr=1-1

    I found out the disorder is called Non 24 Sleep Wake Disorder, and usually occurs in totally blind people, or in people who are sensitive to light. http://en.wikipedia.org/wiki/Non-24-hour_sleep-wake_disorder

    I can't believe I went to two sleep specialists and explained all about the problems I was having with sleep and showed them my sleep chart and they had no idea what it was or how to fix it.

    Anyway, it's nice to have a name for it.
     
  13. Calathea

    Calathea Senior Member

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    Yes, it's called N24 for short, and the sleep centre I went to was equally clueless. Have a look at my sleep website, I think I talk about it and DSPS there.

    Lowbluelights.com is a useful source of info, but their prices are ridiculous. Those specs look fine to me, as such things go. My problem is that I have to wear glasses full time, and I found that tinted overglasses worn over my prescription specs were madly uncomfortable. So I tried out the darkness therapy using yellow light bulbs (you can get those anywhere, try eBay for instance) and an orange screen filter (which I got as a free sample from a lighting gel company - have a look at the place I got it from, it's in the links page on my site, and see if you can find somewhere similar in your country), and as the difference was dramatic enough for me to be sure it worked, I then forked out for tinted prescription specs. I had no idea that so many people were using those orange specs on Amazon for treating sleep problems, it's interesting to see a set of reviews based on that. Using yellow light bulbs and an orange screen filter is a lot cheaper than prescription specs, obviously, although you can end up having to buy a few extra lamps. The main reason that option didn't work out for me is because my partner hates coloured light (see below), plus it was a bit of a pain getting the orange filter to stay put on the computer screen every evening.

    That's the same lightbox which I use, it's a good one, although I find the screen angle is off and I have to prop it up to get it at the right angle. Were you actually looking directly at the light? It's meant to be in your peripheral vision rather than your direct vision, partly to avoid doing your head in, and partly because that's where the receptors are in your eyes. Anyway, not everyone can tolerate them. A friend of mine with ME and bad sleep problems couldn't handle the lightbox at all, not even on the dimmest setting, and my partner scurries for cover if I have it on as well (he doesn't have ME, but he does have severe myopia which my eye specialist says is why he doesn't like coloured light). I use it for 45 min myself, so maybe the problem is that it may have worked for you, but you couldn't tolerate it long enough for it to get to the therapeutic stage. Unless you were looking directly at it, in which case no wonder!

    I think that computer screens don't provide enough blue light to keep your sleep cycle at 24 hours, but if you use them in the evening, they definitely produce enough blue light to keep you awake too late. Bad both ways, eh.

    Tell you something odd, though. I experienced a mammoth improvement with the darkness therapy, it was immediate and profound and went on for years. Then I was put on gabapentin, which made my sleep even better while I was on it, but caused nasty insomnia coming off it. I've been off the gabapentin for two months now, and maybe I'm just at the stage where I'm close enough to being back to normal that I mind the slight residual side effects, but my sleep still isn't quite back to normal. It's as if it interfered with my ability to produce melatonin or something. The halogen bulb in my dawn simulator went recently, so for the last few days I've been using a sleep mask at night. My bedroom is pretty dark, but perhaps there's a tiny bit of light left over, enough to cause a difference, or there's some other way in which the eye mask helps. Either way, it is starting to feel more like my usual sleep. It's odd to think that such bad sleep used to be normal for me - I sulk like crazy these days if I get a night of sleep which in the past I'd have considered the best I was going to get.

    It also brings up the question of why so many of us have circadian rhythm problems, and how treatable they really are. I know we tend to be short on natural daylight, and likely to be using computers late into the evening, but I'm not sure that it's enough to account for the difference. Alex mentioned somewhere that he's tried darkness therapy, and I think he said that it worked for him for years and then randomly stopped working. I would really love to see more research on the subject. It's one of the very treatments I've tried where the results were so definite. Normally, I try a supplement for months on end and am never sure whether it's made a blind bit of difference. The business with the gabapentin withdrawal interfering with my sleep in such a big way has me wondering what's going on in the body.
     
  14. caledonia

    caledonia

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    What is your website?

    I wear glasses too and I hate safety glasses. I may have to rethink that one. I figured it was worth a shot to try out for the cheap price.

    I think I may have used it for as long as a half hour. I am using it in the peripheral vision as instructed. But even with toning it down, I can't take it any longer. It makes me feel a bit anxious.

    This may actually be the case. I'm on clonazepam (clonopin) temporarily. My naturopath says over time it depletes melatonin, so I'm taking extra melatonin. As I wean off the clonazepam I have one night where I'm awake for 5 hours, then I'm ok after that.

    I tried that too, but I think the gel wasn't dark enough to make much difference.


    I got very sick for many months starting last August. I was barely able to watch TV or use the computer. I also started using an eye mask during this time. My sleep straightened out to a normal schedule (first time in 10 years!) and stayed good until I started feeling better and getting back on the computer and TV.

    Then it started moving forward by a few hours, until I found your idea for the orange glasses. I think my experience gives me a clue as to how to treat the problem.

    I know something changed in my body because I didn't have these problems before ME/CFS.

    The N24 wikipedia article says people with perceived sensitivity to light are the ones prone to the problem. This is also something that came with ME/CFS. It has to do with the adrenals (adrenal fatigue). The pupils expand when they're not supposed to.

    I'm also on a SSRI, so definitely problems with serotonin. I've tried melatonin from time to time, sometimes I seem to need it and sometimes not.
     

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