Anyone else have a circadian rhythm disorder?

[Martin aka paused||M.E.]

I don't know if one can call it a circadian disruption now. I fall asleep mostly around 8 p.m.and wake up a thousand times and then around 3 am and then again around 5 am. But I had a shifted rhythm when I was extremely severe. I was awake at night and slept during the day.

From what I have heard from others it's mostly shifted for the very severe pwME. Most of us are in complete darkness all the time (I was too) and then I think it's explainable why the rhythm shifts.

 

[SpiralOut]

This tryptophan treatment sounds interesting. Would you have any more details (like dose taken and time taken)? Would you know the mechanism of action?

So it turns out that in this person's case, insomnia preceded the fatigue and was the principle reason they became bedbound. That said, it may be that the subset of us who have autism may benefit from tryptophan supplementation (dosage nothing out of the ordinary, 250mg-500mg) as this malabsorption issue is quite common: https://link.springer.com/article/10.1007/s11011-017-0045-x

 

[Martin aka paused||M.E.]

as this malabsorption issue is quite common:

The doc I talked to yesterday mentioned fructose intolerance as a reason for tryptophan malabsorption. She also recommended Phosphatidylserine for sleep.

 

[Hip]

I'll see what I can find out for you. As I recall, the use of tryptophan came about by trial and error and the individual's theory is that there's a malabsorption issue that may be common to many autistics.

Thanks very much.

There's a frustratingly wide range of individual sensitivity when it comes to the ipRGCs, and age plays a part too. At one extreme, I know of someone who could entrain using their laptop screen on full brightness! Conversely I have to wear my light therapy device for five hours daily in order to normalise myself. Which would be highly impractical but hey, I'm housebound anyway

Interesting, I did not know there's a wide range of sensitivity of the photosensitive retinal ganglion cells. I guess that might help explain why some people develop SAD (seasonal affective disorder, aka winter depression).

I use light therapy just to combat SAD during the winter months.

What I do is arrange for bright white light at the areas around my computer screen (below my screen, and to the left and right). So while I am working at my computer, I automatically get exposed to the light. I spend around 4 or 5 months each winter using this setup, for the darkest months.

I know when I am not getting enough light, because horrible winter depression will set in within days. When I increase the light level, it takes a few days to disperse the depression,

I use a lux light meter to check the lux level at my eye position. You can buy such a meter for around £20.

In order to ward off winter depression, it is usually recommended to expose your eyes to 10,000 lux for 30 minutes. If you use lower lux levels, then it requires longer exposure times. For example, 5000 lux requires 1 hour, 2500 lux requires 2 hours, etc.

With my computer screen SAD lamp setup, I get around 1000 lux at my normal eye position when viewing the computer screen, and I expose myself to this for about 5 or 6 hours a day.


By contrast, the room where I work on my computer gets only about 200 lux during the winter, as measured on my light meter, and that's when it's a bright sunny day outside. On a sunny winter day in the UK, I measure about 8000 lux outside, but only about 200 lux in my room.


However, while this SAD lamp setup fixes my SAD, it has never helped my ME/CFS shifted circadian rhythm.

This study found that light therapy for ME/CFS patients did not help reset circadian rhythm, and did not help with any ME/CFS symptoms.

 

[Judee]

If I try to go to bed before 3am I wake up a bunch of times.

If I wait to go to bed at or after 3am I can usually sleep for 5-7 hours straight with usually just one wake up somewhere in between.

 

[SpiralOut]

Interesting, I did not know there's a wide range of sensitivity of the photosensitive retinal ganglion cells. I guess that might help explain why some people develop SAD (seasonal affective disorder, aka winter depression).

I use light therapy just to combat SAD during the winter months.

What I do is arrange for bright white light at the areas around my computer screen (below my screen, and to the left and right). So while I am working at my computer, I automatically get exposed to the light. I spend around 4 or 5 months each winter using this setup, for the darkest months.

I know when I am not getting enough light, because horrible winter depression will set in within days. When I increase the light level, it takes a few days to disperse the depression,

I use a lux light meter to check the lux level at my eye position. You can buy such a meter for around £20.

In order to ward off winter depression, it is usually recommended to expose your eyes to 10,000 lux for 30 minutes. If you use lower lux levels, then it requires longer exposure times. For example, 5000 lux requires 1 hour, 2500 lux requires 2 hours, etc.

With my computer screen SAD lamp setup, I get around 1000 lux at my normal eye position when viewing the computer screen, and I expose myself to this for about 5 or 6 hours a day.


By contrast, the room where I work on my computer gets only about 200 lux during the winter, as measured on my light meter, and that's when it's a bright sunny day outside. On a sunny winter day in the UK, I measure about 8000 lux outside, but only about 200 lux in my room.


However, while this SAD lamp setup fixes my SAD, it has never helped my ME/CFS shifted circadian rhythm.

This study found that light therapy for ME/CFS patients did not help reset circadian rhythm, and did not help with any ME/CFS symptoms.

The wearable light therapy device gives light equivalent to a 10,000 lux lightbox at its intended distance (which as you know is impracticably close). By wearing it for 5 hours I'm actually getting 5-10x the total amount of therapeutic effect as a typical lightbox 'dose'. Now, I have non-24 and I wouldn't expect you to need so much for DSPD. But to get circadian effects you do need significantly more than for antidepressant effects. (FWIW when for some reason I am 'free running' (letting my clock cycle naturally) I can do a 45 minute 'antidepressant dose' without it affecting my cycle at all.)

Also worth mentioning: The earlier in the day the more effective; and adding evening 'dark therapy' (wearing blue-blocking goggles) plus melatonin (taken several hours before bedtime) will reduce the amount of light therapy time needed. However I have found that the dark therapy/melatonin make things more unpleasant on the fatigue front so I opt for just the very long light therapy.

I'm only able to see the abstract of the study you linked, but it looks like they were only examining the effects on CFS? I don't see any mention of circadian effects. (Oh whoops they mention body temperature variability. But still: ) Not that I would expect any from 1 hour of 2,500 lux.

Also in case you missed my other reply:

So it turns out that in this person's case, insomnia preceded the fatigue and was the principle reason they became bedbound. That said, it may be that the subset of us who have autism may benefit from tryptophan supplementation (dosage nothing out of the ordinary, 250mg-500mg) as this malabsorption issue is quite common: https://link.springer.com/article/10.1007/s11011-017-0045-x

 

[lenora]

I'll see what I can find out for you. As I recall, the use of tryptophan came about by trial and error and the individual's theory is that there's a malabsorption issue that may be common to many autistics.



There's a frustratingly wide range of individual sensitivity when it comes to the ipRGCs, and age plays a part too. At one extreme, I know of someone who could entrain using their laptop screen on full brightness! Conversely I have to wear my light therapy device for five hours daily in order to normalise myself. Which would be highly impractical but hey, I'm housebound anyway :/

Good morning (or whatever!) everyone.....Is there a particular place to order the Australian oils from...and what is the best time of day to apply the same? Thanks. Yours, Lenora.

 

[Howard]

This tryptophan treatment sounds interesting. Would you have any more details (like dose taken and time taken)? Would you know the mechanism of action?

In regards to the tryptophan.. I was unable to attain restful sleep for seven years running, until I started ingesting tart cherry juice/powder at night.. 2-3 hours prior to sleep.

I experienced positive sleep results and less fatigue upon waking, almost immediately.

Per pilot study -

"Cherry juice increased sleep time and sleep efficiency. Cherry juice procyanidin B-2 inhibited IDO, increased tryptophan availability, reduced inflammation and may be partially responsible for improvement in insomnia."

I do not understand the mechanisms involved (over my head), but perhaps this will be of some use to somebody

Study link:
https://www.ncbi.nlm.nih.gov/labs/pmc/articles/PMC5617749/

 

[wabi-sabi]

but light during the earlier part of the day is the main component.

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.

 

[Viala]

In order to ward off winter depression, it is usually recommended to expose your eyes to 10,000 lux for 30 minutes. If you use lower lux levels, then it requires longer exposure times. For example, 5000 lux requires 1 hour, 2500 lux requires 2 hours, etc.

With my computer screen SAD lamp setup, I get around 1000 lux at my normal eye position when viewing the computer screen, and I expose myself to this for about 5 or 6 hours a day.

By contrast, the room where I work on my computer gets only about 200 lux during the winter, as measured on my light meter, and that's when it's a bright sunny day outside. On a sunny winter day in the UK, I measure about 8000 lux outside, but only about 200 lux in my room.

I have used light therapy for the last couple of months, 10000lux 15 minutes in the morning. In the beginning I had four 15 minute sessions, one in the morning, three in the early afternoon. After two months I think I saturated my eyes with light, because I could no longer tolerate afternoon light sessions, I got sleepy and tired. Same happened when I was in the bright light outside. Now that we will have less daylight I probably will change it to 30 minutes in the morning.

I hoped it will help with my fatigue and mood, but haven't noticed anything significant besides that 2 months saturation moment and I believe that this light fatigue is somehow connected to CFS, but by what mechanism? No changes in my circadian rhytm either. I think eveyrone who can tolerate brighter light should do it anyway, we spend too much time indoors and our rooms usually do not have the average 300lux bright office or workplace lighting, so we are light deficient.

 

[wabi-sabi]

Most of us are in complete darkness all the time (I was too) and then I think it's explainable why the rhythm shifts.

This is a very interesting idea and shows how much of this disease is a vicious circle.

Part of our feeling awful comes from sleep deprivation, but we can't tolerate the light that would give us a better sleep cycle.

 

[Martin aka paused||M.E.]

This is a very interesting idea and shows how much of this disease is a vicious circle.

Part of our feeling awful comes from sleep deprivation, but we can't tolerate the light that would give us a better sleep cycle.

I think it's bc blue light frequencies set the cortisol to spike in the morning and during the day and darkness signals the body to produce melatonin. But just a theory.

 

[Alvin2]

Non 24. Bad.
Body clock is on an about 25 hour cycle.

I use natural light restriction about 4 hours before current bedtime, calcium about 5 hours (at least keeps it at 25 hours stable and no 3-4 hour jumps every week or so) and 1mg melatonin 1-2 hours before bedtime. Move all 1 hour a day forward via alarms on the tablet.

If i can't do natural light restriction 4 hours before bedtime i use the blue light blocking orange glasses. But they are not as good as natural light restriction.

Also i use Flux on the computer starting at melatonin time.

 

[wabi-sabi]

I think it's bc blue light frequencies set the cortisol to spike in the morning

Cortisol levels rise in the early morning before you are awake, when your eyes are still closed in sleep. It's triggered by your SCN (suprachiasmatic nucleus) firing. The SCN has a rhythm independent of light.

Stress will make you squirt out more cortisol too and interfere with good sleep.

 

[Martin aka paused||M.E.]

Cortisol levels rise in the early morning before you are awake, when your eyes are still closed in sleep. It's triggered by your SCN (suprachiasmatic nucleus) firing. The SCN has a rhythm independent of light.

Stress will make you squirt out more cortisol too and interfere with good sleep.

Again a theory of mine proved wrong thanks for clarifying!

 

[wabi-sabi]

Light does something with cortisol during the day. It's just that the cortisol squirt that wakes you up in the morning happens when you are still asleep in the dark.

 

[SpiralOut]

Non 24. Bad.
Body clock is on an about 25 hour cycle.

I use natural light restriction about 4 hours before current bedtime, calcium about 5 hours (at least keeps it at 25 hours stable and no 3-4 hour jumps every week or so) and 1mg melatonin 1-2 hours before bedtime. Move all 1 hour a day forward via alarms on the tablet.

If i can't do natural light restriction 4 hours before bedtime i use the blue light blocking orange glasses. But they are not as good as natural light restriction.

Also i use Flux on the computer starting at melatonin time.

Hello comrade!
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?
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've never heard of using calcium, what's the thinking there?
If you're interested I can pm you an invite to a non-24 discord server

 

[Hip]

In regards to the tryptophan.. I was unable to attain restful sleep for seven years running, until I started ingesting tart cherry juice/powder at night.. 2-3 hours prior to sleep.

I experienced positive sleep results and less fatigue upon waking, almost immediately.

Per pilot study -

"Cherry juice increased sleep time and sleep efficiency. Cherry juice procyanidin B-2 inhibited IDO, increased tryptophan availability, reduced inflammation and may be partially responsible for improvement in insomnia."

I do not understand the mechanisms involved (over my head), but perhaps this will be of some use to somebody

Study link:
https://www.ncbi.nlm.nih.gov/labs/pmc/articles/PMC5617749/

That's interesting. On times where I have eaten a lot of cherries before bed, I noticed that I will invariably sleep for about 90 minutes longer than normal. I am not sure if I slept any deeper, but I certainly slept longer, and I guess I may have been slightly more refreshed in the morning as a result of having more sleep.

I have not tried cherries regularly though, to see what sleep benefits they might have.

 

[Hip]

The wearable light therapy device gives light equivalent to a 10,000 lux lightbox at its intended distance (which as you know is impracticably close). By wearing it for 5 hours I'm actually getting 5-10x the total amount of therapeutic effect as a typical lightbox 'dose'. Now, I have non-24 and I wouldn't expect you to need so much for DSPD. But to get circadian effects you do need significantly more than for antidepressant effects. (FWIW when for some reason I am 'free running' (letting my clock cycle naturally) I can do a 45 minute 'antidepressant dose' without it affecting my cycle at all.)

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.

Maybe it is the positioning of my SAD lamps that causes the sensation of glare: one lamp is is beneath my computer screen, and another on the side of my computer screen. Rather than being positioned above, which appears to be the direction of light from Luminette 3 glasses.



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.

Incidentally, I did suffer from non-24 for many years, but I found that melatonin taken in advance of bedtime fixed it. For years, I was in this state where I would go to bed slightly later every night, so that eventually I would be going to bed after sunrise. And then my bedtime would get even later, 9 am, 10 am, 11 am, 12 pm, 1 pm, etc. Eventually I would cycle round back to normal. But then would start all over again, going to bed later and later.

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).

So if you want to try to get yourself to bed at say 1 am, you would take the melatonin each night at midnight or earlier. You take the melatonin, and you carry on what you are working on or doing, but as the melatonin starts to kick in, you will feel a natural tiredness appear, and thus inclination to stop work and go to bed. That's what I have found anyway.

I would set an alarm clock on my computer to remind me to take the melatonin at the same time every night. That I found stabilized the non-24, and got me to bed at the same time each night. I wrote a thread on this technique here.

So the melatonin taken in advance of bedtime fixed my non-24. But what I have found is that I do not keep to the discipline: instead of taking the melatonin at say midnight, I might delay taking the melatonin for half an hour, just so that I can continue the tasks I am working on for little longer. And then bit by bit, I end up taking the melatonin later and later, until I start going to bed at 5 or 6 am.

It's almost as if I have become attracted to the night. Certainly the night is more silent and tranquil than the day, so maybe that's why I stay up late. But in any case, although I still stay up late, I no longer have the horrible non-24.

 

[Hip]

Is there a particular place to order the Australian oils from

Yes, these Australian B12 oils are made and sold by Dr Greg Russell-Jones, and can be bought here. Thread about them here.