Posted tagged ‘Non-24 sleep wake disorder’

I’m still alive!

July 20, 2015

Well, it’s five years on, and I’m still using darkness therapy to keep to a 24 hour sleep pattern.  My sleep quality varies, as it always will for someone with ME/CFS, but being able to keep to a good bedtime is something I’m profoundly grateful for.  Chronic pain is a bigger part of my life these days, and for one reason or another I don’t have any pain medication I can use at night, so sometimes that’s a factor in my sleep problems.  I also turned out to be anaemic, something I only realised after developing Restless Leg Syndrome.  It’s always advisable for people with RLS to get their ferritin levels checked, and if their ferritin is below 75 (which is higher than the NHS reference range for preventing anaemia), to get it treated.  Thankfully the iron supplements cleared the RLS right up.

In other changes, I broke up with my former partner three years ago, and am about to celebrate my second anniversary with my lovely current partner.  He came with a ridiculous and adorable cat whom I am equally devoted to.  I could happily blether on about the pair of them for some time, but to stick to the subject of this site, this does affect my darkness therapy routine in a few ways.

First of all, he actually likes using coloured light in the evening, he finds it relaxing, so we have a variety of coloured bulbs scattered about our two flats.  I’ve been using incandescents so far, but have started to experiment with fluorescents and have a colour-changing LED bulb on the way.   That string of red LED lights  which I never knew what to do with has finally found a home, taped up under my kitchen cabinets with a timer on.  It’s easily enough light for coming into the kitchen at night to get a glass of water, and you could even wash up by it.  String lights seem to fare best when set out in a long row.  I had tried just bundling them together to give an impression of a single lamp, but it wasn’t much use, and having them out in a row as they’re meant to be somehow seems to give off far more light.  LED bulbs are so low-wattage that I don’t mind just leaving them on overnight every night, even when I’m not there.

Secondly, he’s quite fond of the dawn simulator for when he has to get up for work, and prefers to have a fair amount of light coming through the window to help him wake up.  So the blackout curtain linings are off, and I am using a sleep mask instead.  The curtains do look nicer with light shining through them, especially if you need to draw them in the daytime for privacy.

With regard to the cat, I need enough light around the place for when her ladyship decides that she wants to rush around as if her tail were on fire just when we’re settling into bed for the night.  She has dedicated spots where she likes to roll onto her back and knock seven bells out of a wrestling toy I wave around for her, but she can dash around anywhere, really.  The red lights in my kitchen aren’t quite enough, since she’s very fond of hiding under the dining table, and she’s a small black cat to boot.  I’m thinking about the options for lighting that part of the flat better at night without having to turn on the overhead white lights.  Also there’s a nightlight by the litter box in my partner’s flat now, as you really don’t want to step in that when blearily wobbling to the loo in the middle of the night.

LED lighting has come quite a long way since I was last blogging, and there are some amazing things I’m longing to try.  There’s more interest in ways of avoiding blue light in the evening too, although it rarely translates to popular products on the market.  I have various shiny new things to review, and a few more on the way.

How to shift your bedtime/waking time to earlier

February 12, 2010

When I was using light therapy alone, I found that my 25 hour pattern shifted to 24 hours beautifully but that sooner or later, I would stay up too late and would end up stuck on falling asleep at 4 am or so again.  DSPS is a tough nut to crack.  This was in the days before I found darkness therapy, which has made my sleep/wake pattern rock solid, so here’s how I treated it at the time.

My preferred sleeping tablet when I need one is 20mg temazepam; many people find that 10mg is enough, but I need a higher dose.  While my GP advised me that I should be able to take it for up to a week, I found that taking it for a week straight caused rebound insomnia when I stopped, presumably because the ME/CFIDS makes me over-sensitive to medication.  I find that taking it for three consecutive nights is fine, so I work with that.  It’s entirely possible that I’d be fine with five nights, but I’ve never needed to try.

I would always recommend strongly that you discuss this with your GP.  They should be made aware of your sleeping problems anyway, even if you’re trying to solve them yourself, and sleeping tablets are fairly serious things, even the over-the-counter ones.  Discuss which sleeping tablets will best meet your needs, and if you’ve had a sleep problem for a while you’ve most likely tried several by now anyway.  Do tell them that you will only be using the tablets for a few nights in order to shift your sleep pattern, as otherwise they will be a lot more reluctant to let you have any meds.  I’ve managed to convinced a GP who’d never met me before to let me have four sleeping tablets for this purpose when it was an emergency (missed flight, unexpected night flight), and I doubt that he’d have let me have anything at all if I’d just wandered in to say that I was a bad sleeper and wanted some drugs please.

I’ve always been able to move my sleep back enough over three days using this method, but if I had needed to control a larger shift I would probably have done three days, waited a week, and then repeated the process.  My general lightbox treatment time is 45 minutes, but for this I would sometimes use a longer treatment time to help reinforce the circadian shift.  As far as I can recall, I used an ordinary alarm clock to make sure I got my light therapy at the right time the next morning, but dawn simulation would probably be even better.

Let’s assume that my bedtime is usually 1 am but has shifted to 4 am.

Day 0 – bed at 4 am, wake the next day at 12 pm.
Day 1 – sleeping tablet at 2.30 am for 3 am bedtime, bright lightbox at 11 am.
Day 2 – sleeping tablet at 1.30 am, lightbox at 10 am.
Day 3 – sleeping tablet at 12.30 am, lightbox at 9 am.
Day 4 – no sleeping tablet, lightbox at 9 am.

After that I would relax and use the lightbox whenever I woke up, instead of setting an alarm clock.  This method worked for me every time, including when I had to go on a night flight and deal with a 3 hour time difference to boot.

If you are using darkness therapy, you may not need the sleeping tablets at all.  Just put on the tinted glasses/switch over to orange lighting an hour earlier every evening.  The usual recommendation is to commence darkness therapy three hours before your desired bedtime, though some people find that they get sleepy too early if they do this.  Obviously getting sleepy too early is not a deterrent for DSPS sufferers!

For the above problem, I’d suggest starting the darkness therapy three or four hours before your current bedtime to begin with, and seeing what happened.  It may take a few nights to kick in fully.  Use the bright lightbox when you wake up.  You can wait until you wake up naturally, depending on how effective the darkness therapy is for you, or you can set an alarm so that you make yourself use the lightbox an hour earlier every day.  Since you’re not using sleeping tablets and therefore don’t need to worry about getting the process completed in a hurry, you can try shifting your sleep more slowly, even by 15 min a night.  Keep a diary of what you’re doing so that you don’t lose track.

If you have Non-24 Sleep-Wake Disorder, I’d suggest waiting until your circadian clock has shifted around to your ideal bedtime and waking time before trying anything, then hitting it with light therapy, darkness therapy and/or sleeping tablets to stabilise it there.  The sleeping tablets are a short-term measure, but the light and darkness therapies can be continued full-time and indeed should if you have a circadian rhythm disorder.

If your problem is jet lag or shift work, rather than a misbehaving body clock, you’ll have to experiment to find out what suits you best, and you may only need to use light/darkness therapies occasionally.  Sleeping tablets are best reserved for occasional use, so if you are going to be moving your sleep pattern every week or so, I wouldn’t advise them, and I would certainly suggest that you discuss this with your doctor.  Some companies give their night shift workers yellow safety goggles to wear when they go home in the daytime, so that the light on their journey won’t keep them awake.

If your problem is instead Advanced Sleep Phase Syndrome, then use bright light therapy in the evenings instead to keep you awake for longer.  I have absolutely no idea how darkness therapy would factor in here, but if you’re using it for other purposes (e.g. sounder sleep), I would imagine you would want to be careful not to start it too early in the evening, and remember that darkness therapy alone is unlikely to shift your body clock in the desired fashion.  Light therapy will be the key here.

For any of these problems, dawn simulation alone is unlikely to be enough to shift your body clock, at least in my experience, but may be very helpful in sticking to a good pattern once you have one in place.  I recently went back to dawn simulation, and while I had already stabilised my body clock using light therapy and darkness therapy by now, I think it may be adding a little extra help, and my partner is certainly finding that the dawn simulation makes it much easier to get up in the mornings.

Bright light therapy: review of the GoLite

February 12, 2010

The GoLite is a nifty little lightbox at only 15 x 15 x 3cm, which makes it extremely portable.  It comes with extra international plugs and a padded carry case, and I have successfully used mine in Israel as well as the UK.  My version is not rechargeable, but the newer ones are, so that if you need to use it somewhere else, you wouldn’t have to scrabble around on the floor to unplug and replug cables.  The case has a clamshell design, so that when it’s closed the lid protects the LED panel, and when it’s open the lid acts as a base.  Unfortunately, the stand is not adjustable and I’ve found that it’s at the wrong angle when it’s placed on a table, so that I have to prop it up on my glasses case.  LEDs are a very directional form of light and you have to position LED lightboxes just right.  While the brightness of traditional fluorescent lightboxes is measured in lux, with 10,000 lux being ideal, the light produced by LEDs is so different that the lux measurement doesn’t apply.  I don’t think I’ve heard yet of an LED lightbox which was not bright enough, but do read reviews if you are looking at different models.

Unlike the lightboxes which came before it, the GoLite doesn’t just use LEDs, it uses blue LEDs. The manufacturers found through research that there’s one particular bandwidth of light that affects the circadian clock, at around 470nm, and luckily blue LEDs naturally peak in exactly that bandwidth.  (Despite what the manufacturers claim, all blue LEDs do this, so any lightbox with blue LEDs should do the same job.)  Traditional fluorescent lightboxes do contain some light in that bandwidth, but they don’t have very much of it.  By isolating the correct bandwidth, the idea is that you can get away with a smaller lightbox and a shorter treatment time, thus hugely increasing how effective it is.  My experience and all the reviews I’ve read of blue lightboxes appear to bear this theory out.  The manufacturers recommend a treatment time of 15-45 minutes, which for bright lightboxes is excellent, and even with stubbon sleep disorders I have always found 35-45 minutes to be sufficient.  The snag is that not everyone likes blue light, but most people are fine with it and it’s a pretty soothing light as such things go.  I have difficulty tolerating bright light and I’m absolutely fine using the light on full intensity.  The build quality appears to be good and the only problem I’ve had in five years of near-daily use is that one of the 66 LEDs now only lights up intermittently, which does not affect the efficacy or visual comfort at all.

Apart from the inability to adjust the stand and the high price, my only niggle with the GoLite that I own is that the settings are a nuisance to understand and the instruction manual wasn’t much help.  It does have various features, including a clock, treatment timer, variable light intensity, and the ability to save three different programmes, but you may need to ring up your seller or the manufacturer in order to learn how to do this.  It’s not intuitive to set, involving strange combinations of holding down several buttons at once, and you’re unlikely to remember how to do it.  After five years of use, I’ve sorted out my preferred treatment time and light intensity so that I just need to turn it on and hit “light” in order to get my treatment running, but I have no idea how to change the programme settings or even how to change the time when the clocks go back.  Thankfully I only use the one programme and don’t use it as my clock (it lives in a bedside drawer when not in use), so this doesn’t particularly matter.  I did try using Programme B for a shorter treatment time with lower light intensity for when I had a headache, but eventually I stopped bothering.  If I have a migraine, I skip the lightbox for that day, and if it’s only a mild headache, the light doesn’t seem to do me any harm.

The GoLite was my first big step in improving my sleep.  Before using it, my daily pattern was 25 hours, so that I would fall asleep an hour later every day.  I started using the GoLite when I woke up, and the pattern immediately stabilised at 24 hours.  With judicious occasional use of sleeping tablets, I could even move my bedtime and waking time back when they had crept too far forward, although I still tended towards late hours and had to accept that while the Non-24 Sleep-Wake Disorder was now firmly under control, the Delayed Sleep Phase Syndrome was only partially managed.  (Darkness therapy is what finally solved the latter.)  After some experimentation, I have settled on a 45 minute treatment time, although now that I am using darkness therapy as well I may be able to get away with less.  I found after a few years that even if I skipped my treatment for the odd day here and there, my sleep pattern remained stabilised at 24 hours, so it seems that to some degree my circadian clock has been retrained.

I bought my GoLite in 2005, back when it was the only LED lightbox on the market and pretty new at that.  The version I bought was the P1 (the link takes you to the place I bought it from, which I highly recommend).  As you can see, it’s still for sale at quite a good price now, although some people may prefer to pay more for the newer, fancier versions.

Back then, the GoLite was made by an American company called Apollo Health who made a variety of fluorescent lightboxes as well and had done quite a lot of research into light therapy.  I loved their website.  It had some of the best information about bright light therapy for various conditions that I’d ever seen, and devoted plenty of space to sleep disorders, where most lightbox manufacturers just talk about SAD.  It even had a free test you could take to find out whether you had a circadian rhythm disorder, rather like the Morningness-Eveningness Questionnaire.  When I rang the company, there was an extraordinarily knowledgable chap I could speak to about exactly how I should treat my sleep disorders using light therapy.  Apollo Health has since been taken over by Philips, which means that you have a household name, you can speak to customer services in your own country, and it’s doubtless doing great things to get the product out there, but that wonderful resource of the Apollo Health website has been lost.

The new GoLite

Philips have redesigned the GoLite so that it now looks rather different.  I haven’t tried it out yet, but I’ve spoken about it in some depth to the National Light Hire Company.  It does look snazzier, but frankly I’m not that interested in its decorative value and it’s certainly not something I’d be willing to pay more money for.

The new GoLite BLU (no, Philips, misspelling words does not make your product more attractive to me) still lacks an adjustable stand, but it does feature a built-in battery, so that it is rechargeable.  I’ve always hated having to mess around with unplugging cables whenever I wanted to move my lightbox to the other room, so this would have been a very useful feature for me, and it would have made it easier to take over to my partner’s flat in the days before he moved in.  I’ve read that it has a much wider treatment angle than the older model, though I’ve not been able to confirm this.  When I talked to the National Light Hire Company, we discussed how it compared to the Lumie Zip, another popular LED lightbox, and they said that the new GoLite has a lot more features than the Zip and is generally more modern and high-tech.  They did not know whether it was easier to use, but judging from the user manual it’s still awkward.  It features a touchscreen, which I suspect may make it even more awkward when it comes to holding down two buttons at once, although at least the display looks nice and clear, in a blue that matches the bright light panel.  Abandoning the clamshell design of the older GoLite means that you no longer  have a back that can flip over to cover the screen. From having knocked mine onto the floor countless times over the years, I think the GoLite is sturdy enough that it doesn’t matter, and they do provide a nice slimline carry case.

The GoLite continues to be known as one of the highest-quality lightboxes around, and its small size and relatively short treatment time give it a big advantage over traditional fluorescent lightboxes.  It is no longer the only LED lightbox on the market, however.  Apart from the  popular Zadro (not available in the UK), all other LED lightboxes provide white light which peaks in the blue spectrum.  Blue provides a gentler light and possibly (but not necessarily) a slightly shorter treatment time, while white is likely to be more acceptable to anyone who is picky about their light colour, for instance if they need to make colour judgements.  Whether you prefer to pay more for the additional features and reliable brand name, or save money to get a more basic LED lightbox, is up to you.  If I were starting over with light therapy now, I think I’d buy a cheaper lightbox but make sure that it was from somewhere with a good returns policy in case of faults.

Finding your best sleep pattern and napping

January 26, 2010

It’s useful to know that a sleep cycle is 90 minutes long, and it’s best to be sleeping in multiples of 90 minutes, as this means that you will be waking up at the right point in your sleep cycle, rather than feeling horribly groggy because you were woken out of deep sleep and going straight back to sleep. Some people do best on a siesta pattern, which is commonly practised in hotter countries.  I fall into this pattern occasionally myself, but I find it too difficult to keep up.  I’ve spent enough years telling people not to call me in the mornings as I may not be awake, I know how disruptive it is to sleep during the working day.  In addition, I want to be going to bed and getting up at the same time as my partner, and I find it easier to control my sleep if I’m having my night’s sleep all in one go.  Sleeping in the day is more likely to cause my sleep cycle to end up askew, for instance getting stuck at falling asleep at 4 am.  It may work for you, though.  Try 1.5 or 3 hours for a siesta.

The 90 minute cycle also affects when you will feel sleepy in the evening.  The Myhill article above talks about “sleep gates”, which usually occur at intervals of 3 hours, and while she advocates an incredibly early bedtime, it’s still useful information no matter what time you go to bed.  I often get sleepy around 9 pm or 6pm, and it’s useful to know that I should make a special effort to keep awake and it will pass.  It’s also made me aware that missing my usual bedtime is really not a good idea, as I then may end up lying awake for hours.

I do nap occasionally when I really need it.  The sleep specialist advised me not to nap for more than one hour, as after that you get into deep sleep and it will disrupt your night’s sleep.  This advice was excellent.  I don’t fall asleep immediately, so I set a timer for one hour and ten minutes.  I also make sure that I nap with the curtains open and the light coming into the room.  No one suggested this, but I reckon it will help my circadian clock realise that this is not nighttime, and I do find napping easier now that I’m following these two rules.  If for some reason my sleep has been totally messed up and I need to catch up on several hours, I may draw the curtains, but thankfully this is rare.

Over the years, I’d heard a number of suggestions about how I could try to change my sleep patterns.  Some have been from books or doctors, some have been from well-meaning friends who knew nothing about sleep disorders.  None of them worked, and most of them sent my sleep pattern completely haywire.  Here are the techniques I don’t recommend for ME or circadian rhythm disorders.  If you have DSPS or Non-24 Sleep-Wake Cycle, you’ll most likely have tried some of them already.

Don’t bother with:

  • Going to bed earlier (unless it’s for a short period where sleeping tablets are used, probably in conjunction with light therapy).
  • Forcing yourself to get up earlier.
  • Staying up all night in the hope that you’ll fall asleep at a more reasonable hour the next night.
  • Going to bed three hours later every night until a suitable bedtime is reached (called chronotherapy).

No doubt these may work for some people who are experiencing a mild one-off problem with sleep, but for entrenched circadian rhythm disorders they are not only pointless, in my experience, but can exacerbate the original problem while causing very unpleasant sleep deprivation.  You are of course welcome to try going to bed or getting up earlier to see if it works, but I don’t think there’s a single person out there with DSPS who hasn’t tried this over and over again.  If that was all we needed to do to cure DSPS, the sleep disorder wouldn’t exist!

Get a diagnosis

January 26, 2010

Work out what’s wrong with your sleep, and if necessary, see a doctor or even a sleep clinic.  Some sleep problems such as sleep apnoea are actually quite dangerous and warrant early investigation.  Note that in the UK at least, sleep clinic waiting lists are long, and if you’re paying for your healthcare then a sleep study is expensive, but it’s generally worth telling your GP what is going on at the very least.  Keeping a sleep diary for a while (a week, a month) can be very useful.  You will want to note down when you sleep, when you doze, when you get up, when you take any meds or treatments that can affect sleep or alertness, and optionally when you eat and get exercise.  If you have sleeping partners, ask what they’ve noticed (e.g. stopping breathing during sleep, waking up with amnesia).  I’m generally going to be talking about circadian rhythm disorders, such as Delayed Sleep Phase Syndrome (when you’re an extreme night owl, e.g. you can’t get to sleep earlier than 4 am no matter how hard you try) and Non-24 Sleep Wake Disorder (when your body clock is running on a 25 hour or 26 hour schedule, so that you will fall asleep an hour or so later every day, which is like living with permanent jet lag), as well as general insomnia and poor sleep quality.  If you have ME, chances are that your sleep will be poor no matter what you do, but it may be possible to improve it to quite an extent.