Anyone else have a circadian rhythm disorder?

[Alvin2]

Am I to understand that your cycle is 'close enough' to 25 hrs that you force it to exactly 25 hrs such as to have some regularity?

Sort of. I don't know exactly what it is as i have too many responsibilities to let it run on its own for long but its also an alarming possibility that its completely free running.
So i use the melatonin to stabilize at about 25 hour.
But if it were free running and melatonin is stabilizing it then i should be able to pick another number which i can't.
If i skip melatonin then i need to wait 4 hours before taking it again (sleep in humans operates on a not well known additional 4 hour oscillator).

If so, I do something similar (when I free fun) as my full cycle maps exactly onto a fortnight if I lengthen it by a few minutes per day.

I was at 24:30 for a long time, then went to 25 and then i was getting 3-4 hour jumps every week or so, very hard to handle.

I've never heard of using calcium, what's the thinking there?

That was discovered by coincidence, i have ostopenia so i am taking calcium (plus correcting vit D deficiency) daily. After maybe 6-9 months i noticed my body clock was not jumping 3-4 hours very often, then one day i missed the supper time calcium and it jumped that night. Since then i have experimented and if i take it about 5ish hours before bedtime it prevents jumps and keeps the 25 hours much more reliably.
My neurologist was surprised and said if he could get a research grant he would try this on more of his non 24 patients in a clinical trial.

If you're interested I can pm you an invite to a non-24 discord server

Sign me up!

 

[Alvin2]

That's interesting, so these Luminette glasses you wear are actually providing 10,000 lux on the eyeballs.

Do you find the 10,000 lux level is comfortable?

When I have experimented with increasing light levels of the SAD lamps around my computer screen to more than around 1000 lux, I find the glare is a little uncomfortable. I am not sure why, since I have no problem on bright summer days, where the ambient lux is about 50,000.

SAD lamps work based on the blue component of the light, our eyes have receptors that use 480nm to set our body clock. 480nm is slightly bluer than a very blue sky.

You have reminded me that most cell phones have an ambient light sensor that measures in lux, i use the cpu-z app to take lux readings which i use for calibration of light in side projects unrelated to ME or non 24.

 

[Hip]

SAD lamps work based on the blue component of the light, our eyes have receptors that use 480nm to set our body clock. 480nm is slightly bluer than a very blue sky.

Yes, the retinal ganglion cells mentioned earlier have a peak wavelength sensitivity around 440 to 500 nm (different studies quote slightly different figures).

SAD lamps like mine which use fluorescent tubes I believe employ daylight tubes (5000 to 6000°C), which have more blue light. However, I find daylight tubes look harsh, so I replaced them with standard fluorescent tubes.

You have reminded me that most cell phones have an ambient light sensor that measures in lux, i use the cpu-z app to take lux readings which i use for calibration of light in side projects unrelated to ME or non 24.

I did not know that cellphones have built in lux sensors. I just downloaded this Android lux meter app, and found that its reading is reasonably close to the readings that my two lux light meters show, at least on my Google Nexus.

Held right next to a bright white background displayed on my computer screen, I got these lux readings from my meters and Android devices:

106 lux on my HoldPeak HP-881D lux meter
172 lux on my cheap Chinese lux meter

120 lux on my Google Nexus 7 tablet with the app
390 lux on my Xiaomi Redmi Note 9 phone with the app


The HoldPeak meter claims an accuracy of ±4%, so this 106 lux is the most reliable reading, I would say.

Looks like my Google Nexus 7 tablet with the lux meter app comes very close to the HoldPeak figure.

But the lux reading on my Xiaomi mobile phone using the same app is way out, so the accuracy of the app must depend on the accuracy of the Android hardware. The Google Nexus is an old but solid piece of kit, whereas my Xiaomi phone although brand new is a cheap and cheerful device, so maybe that's why its internal lux calibration is not accurate.

Note that I noticed these cell phone lux meters work with the front camera, not the back camera. So you have to point the front camera towards the light source you are measuring.



@SpiralOut , you might find it interesting to download the above free lux meter app on your Android phone (or if you have an iPhone, there are similar free lux meter apps), and see what lux reading you get when you hold your phone's front camera at eye distance (a few cm) away from your Luminette glasses.

 

[Alvin2]

Yes, the retinal ganglion cells mentioned earlier have a peak wavelength sensitivity around 440 to 500 nm (different studies quote slightly different figures).

SAD lamps like mine which use fluorescent tubes I believe employ daylight tubes (5000 to 6000°C), which have more blue light. However, I find daylight tubes look harsh, so I replaced them with standard fluorescent tubes.

I have an LED full spectrum device with lenses that makes 10,000lux, causes a headache and does little for the Non 24. It sits unused.
Neurologist was stumped but i think the non 24 is ME induced which would explain things.

I did not know that cellphones have built in lux sensors. I just downloaded this Android lux meter app, and found that its reading is reasonably close to the readings that my two lux light meters show, at least on my Google Nexus.

Held right next to a bright white background displayed on my computer screen, I got these lux readings from my meters and Android devices:

106 lux on my HoldPeak HP-881D lux meter
172 lux on my cheap Chinese lux meter

120 lux on my Google Nexus 7 tablet with the app
390 lux on my Xiaomi Redmi Note 9 phone with the app

Thanks for this, i love test data.
I use mine for comparison purposes so the calibration is not as important but it would be nice if it is calibrated.
LG G8x on my end.

 

[Hip]

That was discovered by coincidence, i have ostopenia so i am taking calcium (plus correcting vit D deficiency) daily. After maybe 6-9 months i noticed my body clock was not jumping 3-4 hours very often, then one day i missed the supper time calcium and it jumped that night. Since then i have experimented and if i take it about 5ish hours before bedtime it prevents jumps and keeps the 25 hours much more reliably.

That's interesting, as I accidentally discovered myself that taking a calcium tablet before bed helps me get to sleep more easily. I don't use calcium regularly, but I actually have a jar of calcium tablets next to my bed, and will take one tablet if I find I go to bed but cannot get to sleep due to being too "wired". I find calcium does not always work, but does help sometimes.



I also have an effective and almost infallible technique to get me to sleep within 5 minutes if I go to bed but find I cannot get to sleep. When I got to bed, and find that an hour or so later I still have not got to sleep, I apply this technique, I invariably I will be asleep within 5 minutes. The technique is simply performing around 80 squats in rapid succession, to exhaust the leg muscles and cause some lactate release. It works every time. Not sure why. But the subjective feeling is that the exhaustion of leg muscles sort of seeps into the brain, and puts the brain to sleep.

The only problem is that when you are lying in bed, it takes a bit of willpower to get up and force yourself to do 80 squats (even though it only takes about 80 seconds to do 80 squats).

 

[Alvin2]

That's interesting, as I accidentally discovered myself that taking a calcium tablet before bed helps me get to sleep more easily. I don't use calcium regularly, but I actually have a jar of calcium tablets next to my bed, and will take one tablet if I find I go to bed but cannot get to sleep due to being too "wired". I find calcium does not always work, but does help sometimes.

I found taking it less than 4 hours before bedtime doesn't work. Needs to be about 5-6 hours, i have not played too much with that because i have had lots of obligations so stability is needed but when i can i plan to push back and see how 6 hours does. I know 7 hours is useless and that 3 hours or less might as well be a placebo.
I also want to try different forms of calcium, i use calcium citrate.

I have 3 alarms for bedtime, calcium and 2 for melatonin.

I also have an effective and almost infallible technique to get me to sleep within 5 minutes if I go to bed but find I cannot get to sleep. When I got to bed, and find that an hour or so later I still have not got to sleep, I apply this technique, I invariably I will be asleep within 5 minutes. The technique is simply performing around 80 squats in rapid succession, to exhaust the leg muscles and cause some lactate release. It works every time. Not sure why. But the subjective feeling is that the exhaustion of leg muscles sort of seeps into the brain, and puts the brain to sleep.

The only problem is that when you are lying in bed, it takes a bit of willpower to get up and force yourself to do 80 squats (even though it only takes about 80 seconds to do 80 squats).

I am too weak to do this and will fall down.
Also i find stretching wrecks my cognitive before physical functioning.
But i never get PEM from over extending the cognitive but a muscle stretch is immediate brain blank.

 

[SpiralOut]

That's interesting, so these Luminette glasses you wear are actually providing 10,000 lux on the eyeballs.

I think what they're claiming is that the lux on the eyeballs is similar to that from a 10,000 lux lightbox when held at the recommended distance (which is what, 6-12 inches?). In addition the luminette light is blue inflected.
I installed the light meter app and found that holding the camera all the way up the lightbulbs gives a reading just in excess of 10,000. Holding it a few inches from the lightbulbs gives a reading of 4-5000. However the way the angles work out, the eyes are getting a minority of the light directly from the bulbs, and a majority reflected by the blue holographic strip. I'd guess it averages out to something in the region of 2500.
That's at the lowest of three power levels, fwiw. The advice of someone more knowledgeable than me was that the brightness from that setting is sufficient to reach some sort of saturation level; and that while the higher settings are likely safe, it's probably best not to chance it for diminishing returns.

I find it very interesting that with these high 10,000 lux level for 5 hours from the Luminette glasses, you do notice circadian effects. I will have to try this.

I hate to sound like I'm shilling for a product, but the luminette while not perfect, is the best of the bunch and if you buy from the myluminette site, you get 30 days money back guarantee so worth giving a trial, imo.

I found the trick with melatonin that fixed my non-24 is not to take melatonin when you go to bed, as many people do, but to take melatonin around an hour or two before your bedtime (or your planned, desired bedtime).

First of all, interesting to have already identified two non-24ites from a cohort of what, a few hundred people who log in here each day? And interesting that in your case, melatonin alone causes phase advance. Much as with CFS/ME, every case seems to be unique. I have heard of people who:
- have been 'cured' with low dose abilify (hasn't worked for me at high dose)
- have been 'cured' by cutting out dairy (hasn't worked for me)
- switch on and off seasonally
- experience all manner of irregularites (my rather regular 25.75 hour pattern seems to be the exception rather than the rule)
Also interesting that you naturally gravitate to DSPD hours, as do I. Indeed a majority of cases seem to have started as DSPD.
Wrt melatonin, early dosing it (to 'kickstart' endogenous production) used to be a part of my protocol; but I find that it makes my fatigue more unpleasant.

I also have an effective and almost infallible technique to get me to sleep within 5 minutes if I go to bed but find I cannot get to sleep. When I got to bed, and find that an hour or so later I still have not got to sleep, I apply this technique, I invariably I will be asleep within 5 minutes. The technique is simply performing around 80 squats in rapid succession, to exhaust the leg muscles and cause some lactate release. It works every time. Not sure why. But the subjective feeling is that the exhaustion of leg muscles sort of seeps into the brain, and puts the brain to sleep.

Hmmm. Can't say I've tried exercising right before sleep, or indeed doing anything high intensity lately. But intuitively I feel like this would crash me the following day(s).

 

[Hip]

I think what they're claiming is that the lux on the eyeballs is similar to that from a 10,000 lux lightbox when held at the recommended distance (which is what, 6-12 inches?). In addition the luminette light is blue inflected.
I installed the light meter app and found that holding the camera all the way up the lightbulbs gives a reading just in excess of 10,000. Holding it a few inches from the lightbulbs gives a reading of 4-5000. However the way the angles work out, the eyes are getting a minority of the light directly from the bulbs, and a majority reflected by the blue holographic strip. I'd guess it averages out to something in the region of 2500.

The exact positioning of light meter (the phone's front camera in this case) will make a big difference in lux level reading, because lux level falls off rapidly with increased distance from the light source.

So you would want to work out exactly where the iris of your eye is be positioned when you are wearing these glasses, and then place the camera lens exactly in that location, with the camera pointing (looking) in the direction that your eyes would be looking when wearing the glasses.

I hate to sound like I'm shilling for a product, but the luminette while not perfect, is the best of the bunch and if you buy from the myluminette site, you get 30 days money back guarantee so worth giving a trial, imo.

A review I read also said the same thing, so I'd be buying the Luminette 3 if I did want to try it.

I'd probably buy it straight away if it cost say £40 or 50, but £169 seems a little overpriced for what is effectively just a few LED bulbs in a plastic spectacle device. I guess the price reflects the thoughtfulness and quality that has gone into the design.

However, I might just trial it, and return them for a refund if I don't get any benefits.

Hmmm. Can't say I've tried exercising right before sleep, or indeed doing anything high intensity lately. But intuitively I feel like this would crash me the following day(s).

Yes, I would be careful regarding triggering full PEM the next day. I am not that prone to PEM from physical exertion. I can go for a 40 minute brisk walk with zero PEM issues the next day. So this is not a concern for me.

If you are more prone to PEM than I, possibly reducing the amount of squats might still induce this soporific effect, but without any PEM repercussions the next day. For example, doing just 10 or 20 squats rather than 80.

I suspect it's the lactic acid burn you get in your muscles that has the sleepy effect. I have not really tested it properly, but my impression is that unless I exercise the muscle to the point that you get the lactic acid burn (the mild pain in the muscle), then it does not get me to sleep.

Some ME/CFS patients produce lactic acid incredibly quickly on exertion, so if you can get that lactic acid pain in your leg muscles on just doing 10 or 20 squats, that may be good enough.

There is some evidence that lactic acid acts as a signaling molecule in the brain, and my hunch is this might be the mechanism behind it.

Muscles also produce a lot of anti-inflammatory IL-6 when used (IL-6 comes in both pro-inflammatory and anti-inflammatory versions), and IL-6 plays a role in sleep.

 

[lenora]

Yes, this is what a sleep doc recommended to me and it does help a bit. For me, it's more about getting a dose of light in the morning than avoiding the screen at night.

It's very odd, but since I am a major insomniac I do spend a lot of time on the computer. I've always expected that it wouldn't be good, but in my case the opposite is true.

I don't think (for me) that it makes any difference at all. When I'm tired, I could be in bright sunlight and fall asleep. Sound blocking helps me most....earplugs, the foam ones (I use purple) take a bit of getting used to, but are heavenly at blocking out sound. When I was alone a lot (husband traveling) I used to leave them in all day....I liked the silence they provided. But no, computers and light don't bother me. Yours, Lenora.

 

[SpiralOut]

The exact positioning of light meter (the phone's front camera in this case) will make a big difference in lux level reading, because lux level falls off rapidly with increased distance from the light source.

So you would want to work out exactly where the iris of your eye is be positioned when you are wearing these glasses, and then place the camera lens exactly in that location, with the camera pointing (looking) in the direction that your eyes would be looking when wearing the glasses.

This was not particularly easy to do! As best I can tell it's in the 1500-2000 range.

 

[Hip]

This was not particularly easy to do! As best I can tell it's in the 1500-2000 range.

That's interesting. So if we assume the lux meter on your phone is reasonably accurate, these Luminette glasses are not approaching the 10,000 lux level that SAD lamps produce (if your eyes are close to the lamp).

Although we would need take into account the increased level of blue in the light emitted by the Luminette glasses, because that of course will increase the effect on the retinal ganglion cells, making the light level equivalent to a higher lux rating. So it could be that the Luminette glasses produce a lower lux level, but make up for that by the higher proportion of blue light.

 

[Hip]

@SpiralOut , I have just ordered this blue SAD lamp product from Amazon UK. Seems very good value at just £12. It looks like this:

Blue SAD Lamp, Equivalent of 10,000 Lux

​

It is 9.45 inches tall. It claims to be the equivalent of 10,000 lux, but only draws 5W, I guess because the blue light is more efficient at activating the melanopsin retinal ganglion cells.

I am interested to try out this blue light form of SAD therapy, as I've only used white light up until now. This blue SAD lamp I can position at the top of my desktop computer screen.

I found this review of blue vs white SAD lamps, which says some very interesting things:

Melanopsin photoreceptors must be stimulated by some blue light in order for our brains to respond to light therapy. It turns out that very bright white light works because it contains some of the necessary blue light. However, scientists have discovered that blue alone is more effective than white light. When compared to both white 10,000 lux and white LED's, blue light was twice as effective*.

Additionally, by using only 8 lux of blue light, researchers were able to demonstrate the same response compared to 12,000 lux of white light. Eliminating these unnecessary wavelengths increases effectiveness and also significantly reduces overall intensity.

Most 10,000 lux products contain much more blue light, so why aren't they as effective as low-level blue light? Part of the answer may be that high-intensity white light may over-stimulate the eye's photoreceptors, making it more difficult for melanopsin to respond.

Some researchers believe that other wavelengths create 'spectral opponency' and cancel out the effectiveness of the blue spectrum. It seems obvious though, that eliminating unnecessary wavelengths lowers the needed amount of blue light, while still being more effective than white

 

[TinaYesen]

Delayed sleep phase disorder is definitely what I have too. Before ME, I get up at 5-6 am and to bed around 11 pm. With ME, I was staying up late because that's when I feel the best, and it's quiet at night. I was staying up until 3 am or so, but I've cut back to 1-2 am and I sleep until noon or so.

I am the same here. Before ME/CFS I fell asleep around 11pm and woke at 6am easily.

Now, no matter what I feel worse in the morning, and prefer waking up late around 1pm after a good 12+ hrs of sleep.

 

[SpiralOut]

@Hip I very much hope this works! I'm curious what your setup is like - is it right to assume your monitor is very close to the wall, and you intend to lean this on its side, propped directly on top of the monitor? It definitely seems like a promising cut-price alternative for anyone who has a desktop setup and spends a lot of time on the computer.

Also in case I haven't mentioned it, the total duration is what matters and it's fine if you have to take a break for whatever reason; it's just that the later in the day it gets*, the longer that total duration will need to be.

*Up until the DLMO which I tend to estimate as being about four hours pre bedtime; after which light exposure becomes counterproductive.

 

[Alvin2]

Also in case I haven't mentioned it, the total duration is what matters and it's fine if you have to take a break for whatever reason; it's just that the later in the day it gets*, the longer that total duration will need to be.

You want less blue light later in the day.
Ideally zero in the evening.

 

[SpiralOut]

You want less blue light later in the day.
Ideally zero in the evening.

I agree! See asterisked part

 

[Hip]

is it right to assume your monitor is very close to the wall, and you intend to lean this on its side, propped directly on top of the monitor?

That's right. My desk butts up against a wall, and on the wall itself there are a series of bookshelves, so it makes it easy for me to place a SAD lamp like this just above my monitor, or to left or right if I want.

 

[Alvin2]

I agree! See asterisked part

In general even in the late afternoon/evening you don't want full spectrum light. We are atuned to the spectral change of evening sun.

Full spectrum in the morning to tell the body clock that this is morning, anchor to this. Within 30 mins of waking up is common advice.

BTW i use f. lux on the computer for evenings/night
https://justgetflux.com/