• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Circadian Rhythm Problems

Ocean

Senior Member
Messages
1,178
Location
U.S.
I read that for those with CFS with circadian rhythm problems that neither melatonin or light therapy is helpful, according to some study (not sure of the validity of the study though). Anyone here have luck with these treatments? I'm looking specifically for those who don't have insomnia, per se, but just circadian rhythm issues.

For me, I sleep just fine, and sleep adequate hours, and have a stable sleep schedule for the most part (not perfect but overall pretty steady). The problem is my body clock seems off and I don't get tired to sleep till much later than would be normal and then wake later too of course. I've always been a night owl but never like it is now. I've tried all sorts of lifestyle methods, etc. to no avail. Sometimes it seemed like vitamin D helped and I'm ramping that back up again, but for now still struggling.

I'm considering melatonin but read some bad things about it, including possibility of depression, so I'm not sure I should try it or not. In the past I took Rozarem which is in some way like melatonin and did not do well on it at all, so that is making me nervous too.

Anyone else without insomnia but with circadian rhythm problems found success to getting to a more normal sleep schedule? Sorry if I may have asked this before, I can't remember.
 

ukxmrv

Senior Member
Messages
4,413
Location
London
I've not found that light therapy was useful in resetting circadian rhythms and melatonin has only some limited use.

The light therapy consisted for me, of either exposure to a bright light in the morning or exposure to bright sunlight. Tried both at different stages of this disease. Both of these left me much worse off. The mornings are a terrible time for me, shaking, nausea, fainting, black spots in front of my eyes. The light made this all much worse and I was in a bad way. Then wiped out for the rest of the day only to improve as the day went on and the evenings better. Repeat. Eventually getting much sicker with viruses, crashing etc.

Melatonin does help a little but it has never reset the rythm for me. I need to keep taking it and although I play with the doses and types (i.e. the long release vs short release ones) it's never been effective in a big way for me.

It may be different for me as the problem I have is right through my family on my mothers side. We are all larks until puberty and then turn into owls.
 

*GG*

senior member
Messages
6,389
Location
Concord, NH
I've heard you can go up to 15mg of melatonin, I believe you should ramp it up slowly, perhaps 3mg increments? And when you feel "groggy" the next morning/afternoon? You should back of on the dosage, particularly if it's a bad groggy state.

Have you ever had your Cortisol levels checked? Neuroscience spit and urine analysis.

GG
 

Ocean

Senior Member
Messages
1,178
Location
U.S.
Thanks GG. I did cortisol once and it was normal but they only tested it once in the day not several times throughout. I read that melatonin is better in smaller doses like 3 mcg? Maybe it depends on the individual.

Thanks UKXMRV. What time do you usually take your melatonin? I've been a night owl even as a young kid. My parents weren't but my mom has become more so now, but she also has gotten sick. I noticed a huge difference in my sleep schedule when I got sick/relapsed so I feel it's definitely related, despite my history of night owl tendencies. I've also tried getting more light when I wake but I don't think it's helped.

Thanks Heapsreal. I hadn't heard of that before. Seems that drug is a diabetes drug? Have you by chance tried it? I wonder if doctors are open to using this for sleep issues? Definitely something to look into.
 

Little Bluestem

All Good Things Must Come to an End
Messages
4,930
The best way to reset your circadian rhythm is to move your bed time and wake time forward up to 3 hours each day. This requires a schedule that allows you to got the bed and get up at these weird times.

I have a circadian rhythm problem, do not have insomnia, and generally sleep adequate hours. I do not have a stable sleep schedule and get poor quality sleep.

When I finally took melatonin pills, it made the problem worse. I am now taking an OTC sleep aid (Jarrow Sleep Optimizer) that contains 0.15 mg and it seems to help. MethylB12 is a melatonin antagonist, so I put one by my bed and pop it into my mouth as soon as I am awake enough to do so. It also seems to help.

I recently started thyroid T3 treatment. In reading about it, I found there is a way of taking it that is supposed to help the adrenals and I thing shift the sleep/wake cycle (still reading, could be wrong on that). I will discuss it with my doctor the next time I see her.
 

Ocean

Senior Member
Messages
1,178
Location
U.S.
The best way to reset your circadian rhythm is to move your bed time and wake time forward up to 3 hours each day. This requires a schedule that allows you to got the bed and get up at these weird times.

I have a circadian rhythm problem, do not have insomnia, and generally sleep adequate hours. I do not have a stable sleep schedule and get poor quality sleep.

When I finally took melatonin pills, it made the problem worse. I am now taking an OTC sleep aid (Jarrow Sleep Optimizer) that contains 0.15 mg and it seems to help. MethylB12 is a melatonin antagonist, so I put one by my bed and pop it into my mouth as soon as I am awake enough to do so. It also seems to help.

I recently started thyroid T3 treatment. In reading about it, I found there is a way of taking it that is supposed to help the adrenals and I thing shift the sleep/wake cycle (still reading, could be wrong on that). I will discuss it with my doctor the next time I see her.

Interesting that melatonin made it worse. Did you take it right before bed? So it actually made you go to sleep even later than normal? Also very interesting about the B12. Thank you!
 
Messages
1,082
Location
UK
The best way to reset your circadian rhythm is to move your bed time and wake time forward up to 3 hours each day. This requires a schedule that allows you to got the bed and get up at these weird times.

Has this method worked for anyone? I tried this a couple of times 5 or 6 years ago. I worked round the clock and stopped when i got to an acceptable bedtime and it only took a few days i think to go to my natural bedtime which is around 2am on a good day.
 

Ocean

Senior Member
Messages
1,178
Location
U.S.
Has this method worked for anyone? I tried this a couple of times 5 or 6 years ago. I worked round the clock and stopped when i got to an acceptable bedtime and it only took a few days i think to go to my natural bedtime which is around 2am on a good day.

I'd be curious to know if it's worked for others too. I don't know if I have it in me to try this though. The idea of having bedtimes of like 10:00 am, 1:00 pm, 4:00 pm, 7:00 pm, even if for just a few days, sounds so awful, I don't think I could do this. Maybe if I get desperate enough.
 

Gypsy

Senior Member
Messages
123
Location
USA
I'd be curious to know if it's worked for others too. I don't know if I have it in me to try this though. The idea of having bedtimes of like 10:00 am, 1:00 pm, 4:00 pm, 7:00 pm, even if for just a few days, sounds so awful, I don't think I could do this. Maybe if I get desperate enough.

I tried that method.

It did not work, and it was a miserable experience.

In the US, I dont think this method is recommended at all anymore. It is considered antiquated and not very effective. The standard recommendation now is light therapy and slowly moving back your sleep about 15 minutes per week, possibly also using melatonin and/or sleep meds.

I think the circadian problems in this illness are unique and very resistant to standard treatments.
 

Little Bluestem

All Good Things Must Come to an End
Messages
4,930
Interesting that melatonin made it worse. Did you take it right before bed? So it actually made you go to sleep even later than normal? Also very interesting about the B12. Thank you!
It has been a few years ago, but I think I took it right before bed and that the dose was 1 mg. I recall that I decided to give it a try when they came out with lower dose pills.

I had a delayed sleep cycle at the time - 2 to 11 am. The melatonin gave me an almost inverted sleep cycle. Sometime I did not get to sleep until after 7 am. I sleep best in the early afternoon. My responsibilities do not allow me to sleep during the day very often, so I don't know exactly what my sleep cycle is now.
 

Ocean

Senior Member
Messages
1,178
Location
U.S.
I tried that method.

It did not work, and it was a miserable experience.

In the US, I dont think this method is recommended at all anymore. It is considered antiquated and not very effective. The standard recommendation now is light therapy and slowly moving back your sleep about 15 minutes per week, possibly also using melatonin and/or sleep meds.

I think the circadian problems in this illness are unique and very resistant to standard treatments.

It really does sound like a very miserable method. My problem with sleep meds is I get poor quality sleep on them and get worse overall because of that so I try to only take them when truly desperate and never on two consecutive nights if at all possible. And also I have a harder time sleeping as soon as I go off them then I did previously (even with tapering off) so they are counter productive to me. I've tried waking earlier in the morning in order to hopefully get to sleep earlier at night but it hasn't worked. Maybe I'll try waking earlier just by 15 minutes a day, wonder if that might work.
 

Ocean

Senior Member
Messages
1,178
Location
U.S.
It has been a few years ago, but I think I took it right before bed and that the dose was 1 mg. I recall that I decided to give it a try when they came out with lower dose pills.

I had a delayed sleep cycle at the time - 2 to 11 am. The melatonin gave me an almost inverted sleep cycle. Sometime I did not get to sleep until after 7 am. I sleep best in the early afternoon. My responsibilities do not allow me to sleep during the day very often, so I don't know exactly what my sleep cycle is now.
Oh that's scary about it giving you the inverted sleep cycle, that's the last thing I would want!
 

valentinelynx

Senior Member
Messages
1,310
Location
Tucson
I get my best sleep between 6 AM and 1 PM (in about 2 hours blocks), even if I go to bed earlier. Light doesn't help; my husband throws open the blinds and turns on the lights at about 7 AM everyday. Melatonin doesn't help (used to help me sleep, but not anymore). Fun is when I work: then I have to get up at 5:30 AM. I actually feel pretty good if I only sleep a couple of hours. After a few days of this, though, I'm a basket case. Hah... how did I get through residency with this disease? It's a mystery to me o_O.
 

Calathea

Senior Member
Messages
1,261
Yes, I have my circadian rhythm problems under control due to light therapy and darkness therapy. Prior to that I was on a 25 hour schedule (Non-24 Sleep-Wake Disorder). I wrote a website about it at In Search of Mornings. I originally started with light therapy, got onto a 24 hour pattern, but was still falling asleep later than I'd like, which meant that the N24 had mellowed into DSPS (Delayed Sleep Phase Disorder). Then I discovered darkness therapy, which is a way of getting your body to produce its own melatonin by blocking out blue light in the evenings. (Taking melatonin tablets never did a thing for me, probably because I was still exposed to blue light in the evenings.) Blue light is the wavelength which tells your body it's daytime, and which suppresses melatonin production, so darkness therapy involves filtering out the blue light by means of orange tinted glasses and/or lightbulbs. These days, I use darkness therapy every night, and light therapy once in a while if I'm having temporary problems with my sleep pattern.

I would absolutely not recommend the method of going to sleep three hours later every day. It rarely works, and instead it usually makes things worse. I was on the Nite-Owl list for a while, and believe me, most people there have tried it. Many of them report that this method is what turned their DSPS into N24. Plus I think there's some decent research into it by now.
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)
I get my best sleep between 6 AM and 1 PM (in about 2 hours blocks), even if I go to bed earlier. Light doesn't help; my husband throws open the blinds and turns on the lights at about 7 AM everyday. Melatonin doesn't help (used to help me sleep, but not anymore). Fun is when I work: then I have to get up at 5:30 AM. I actually feel pretty good if I only sleep a couple of hours. After a few days of this, though, I'm a basket case. Hah... how did I get through residency with this disease? It's a mystery to me o_O.

So working day shift is like a normal person working night shifts and night suk.
 
Messages
1,082
Location
UK
So working day shift is like a normal person working night shifts and night suk.

Yeah totally, in hindsight I often wonder if I'd been able to find nightshift work before I got I'll I may not have burnt out the way I did. Even if I got cured of ME I'd never do a job that required 5.30am rising or even late morning. It's too vicious on the body with a wonky internal clock.
 

caledonia

Senior Member
I had horrible sleep cycle problems. Going to bed later and later 1/2 hour to an hour each day until my cycle was completely reversed - over and over and over. This went on for years! I tried everything listed on this thread and more. All it did was make me more tired.

The only thing that worked was what Calathea mentioned above - blocking blue light in the evening. I use Blu Blocker type sunglasses in the evening as soon as the sun goes down. I wear them until bedtime. I also have a blue light blocking program on my computer called Nocturne (Mac). There are equivalents for PC.

Then I "only" had the typical ME/CFS sleep pattern of staying up very late - like 4-6am and sleeping in until 1pm or so. Then needing a nap later in the day/evening.

I'm happy to report that with methylation treatment, this situation has turned around all by itself in the past few weeks. I'm now going to bed around midnight and getting up bright and early in the morning. I still need the nap, but I hope that will go away eventually too.

Note: I'm still doing the blue blocking sunglasses in the evening so I don't screw up my nice new sleep schedule.
 

Wayne

Senior Member
Messages
4,300
Location
Ashland, Oregon
I'm considering melatonin but read some bad things about it, including possibility of depression, so I'm not sure I should try it or not. ......... Anyone else without insomnia but with circadian rhythm problems found success to getting to a more normal sleep schedule?
Hi Ocean, I would encourage you to give melatonin a try. A typical dose is 3 mg, but you can buy it in 1 mg capsules, and you can then experiment with even smaller amounts by only taking a fraction of a capsule. I've found it invaluable in helping restore a fairly stable sleeping schedule.

I believe I read recently that most people today are somewhat "melatonin-starved", and I suspect pwCFS are especially so. I think I remember feeling a bit "hangeroverish" the first few days I started taking it, but it was nothing compared to the clonazepam I took for many years. I'm currently off the heavy duty benzodiazapines, and doing well on 3 mg/melatonin nightly. My low-dose hydrocortisone therapy has also helped in stabilizing my circadian rhythms.

Good luck in finding something that works well for you.

Best, Wayne
 

soxfan

Senior Member
Messages
995
Location
North Carolina
Wayne- How much clonazepam were you taking? I only take 1/2 mg and am beginning to wonder if this is giving me poor sleep. I have been on it for months but am finding my sleep quality is getting worse. I take it along with Kavinace and maybe will just try Kavinace and 1mg melatonin...