Anyone else have a circadian rhythm disorder?

[SpiralOut]

Delayed sleep phase disorder essentially means going to sleep late and getting up late. In its more extreme form it's rare, but arguably there's a spectrum of varying degrees of night owlishness.

Non-24 sleep-wake disorder (which I have) can be a hard one for people to wrap their head's around. The internal body-clock cycles at the wrong rate and unlike in healthy people, fails to reset each day. My 'day' is almost 26 hours long. The condition is quite common among the blind but vanishingly rare in sighted individuals.

Irregular sleep-wake rhythm is pretty much what it sounds like. Sufferers sleep at random times, for random lengths of time, with no discernible pattern. Probably the rarest of them all.

These tend to present with other comorbidities, particularly depression and ADHD. I know of one other person in the non-24 community who has CFS, and a couple of others who had CFS-like symptoms for some years that were fixed by tryptophan in one case, and B12 injections in the other.

I'm very curious to see whether there's any apparent correlation from this side of things. Speaking for myself, it's sort of hard to believe that I have two such rare conditions without there being any linkage, but anything's possible I guess.

 

[wabi-sabi]

I mostly have the delayed sleep phase disorder. I mostly fall asleep around 2 am, when the healthy me fell asleep around 9 pm. If i'm having an especially bad time I wake frequently and wake up too early in the morning too. With really bad sleep delay there have been times I haven't fallen asleep until 8 or 9 the next morning after being awake all night.

But all the other weirdness seems to be overlayed on the delayed sleep.

 

[Davsey27]

I find that getting natural light during the day and minimizing blue light after sunset can be useful for circadian rhythm.

 

[iliketoread]

I have delayed sleep, I am up at night and want to sleep late and during the day. I've had this for way longer than I had symptoms, it started when I was in middle school. I'm trying to address this problem more seriously than I have ever before bc my symptoms now are awful, maybe going to bed by 9pm-11ish will help ¯\_ (ツ)_/¯

One of the problems I have with going to bed early besides my insomnia issues, are that going to bed early then causes me to have problems with waking up way too early. I don't have problems with too early wakings (and then not enough hours of sleep) when I stick to a delayed sleep cycle.

 

[Viala]

Slightly delayed sleep here as well, I usually have more energy in the evening and early night. So there is a whole day of low energy and when I feel better in the evening, I just don't want to go to sleep. I would go to bed around 1am, but I try to do it earlier, even when I still feel energized. I noticed that when I go to bed at 11pm for a couple of days in a row, I feel better during the day and wake up a bit earlier. It is still very difficult to go to bed at that hour.

I avoid blue light in the evening and use yellow filters, no LED lights and I sleep in a pretty dark room. I usually fall asleep quite easily. I wonder though whether blood sugar levels can impact circadian rhytm. I am not hungry when I wake up and usually eat late breakfast. Based on some studies, this causes blood sugar to be higher in the evening.

When I felt better I woke up at least one hour earlier, refreshed, so I think there is a correlation.

 

[SpiralOut]

I find that getting natural light during the day and minimizing blue light after sunset can be useful for circadian rhythm.

This is absolutely the case. I think whether natural light is 'enough' depends on a person's individual sensitivity, but it has been shown that doing light therapy for a period of time (again varies very much on the individual) using a lightbox or (far better) specialised light therapy 'glasses', can 'entrain' both DSPD and Non24 people to a regular schedule. Blue-blocking/-avoidance and melatonin can help as well, but light during the earlier part of the day is the main component.

 

[christiankatz]

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.

My best sleep happens between 7 and noon-1pm.

I like this sleep schedule, other than it makes it hard to make early appointments when they're necessary. I also like it because of sun and light sensitivity.

 

[Booble]

*raising hand

I feel like a (semi)-normal person in the evening so I sometimes don't want to go to sleep and miss out on it.

Recently I noticed with a pulse oximeter that in the evenings while standing my pulse rate is a typical good rate and while I'm standing it will nicely drop like a regular person. During the mornings and day it is very high when I first stand and I can get it down some while standing if I try very hard to relax but not nearly as low as when it's evening. Who'da thunk?!

 

[Davsey27]

This is absolutely the case. I think whether natural light is 'enough' depends on a person's individual sensitivity, but it has been shown that doing light therapy for a period of time (again varies very much on the individual) using a lightbox or (far better) specialised light therapy 'glasses', can 'entrain' both DSPD and Non24 people to a regular schedule. Blue-blocking/-avoidance and melatonin can help as well, but light during the earlier part of the day is the main component.

Yes forgot to mention am light is very important and agree about varying levels sensitivity per individual

I seem to like the lower latitudes where there is more solar yield

 

[Booble]

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.

My best sleep happens between 7 and noon-1pm.

I like this sleep schedule, other than it makes it hard to make early appointments when they're necessary. I also like it because of sun and light sensitivity.

My husband likes to do appointments and things in the morning. I like to do them in the late afternoon.

Come to think of it. While growing up my mother was an early bird too. I have ptsd thinking about having to go clothes shopping with her in the morning at the beginning of the school year. That was so hard.

 

[Rufous McKinney]

While growing up my mother was an early bird too.

funny how I just remember how hard it was for my Dad to get me out of bed for elementary school. Over and over he would wake me up, school etc, and NOPE no go there. That predates known mono....needing to sleep more than others.

 

[Rufous McKinney]

I have ptsd thinking about having to go clothes shopping with her in the morning at the beginning of the school year.

my mother did not drive. I never went anywhere with my own mother, except on Sunday when Dad and a car, were home.

 

[Rufous McKinney]

late afternoon.

appointments between 1 pm and 2:30 pm. Thats it.

Before is impossible, and by 4 pm: I'm fast going downhill and would really not like to see anyone, see me in that state.

I used to do 4:30 appointments at my herbalist: so I see how this has changed and further narrowed.

 

[christiankatz]

Come to think of it. While growing up my mother was an early bird too. I have ptsd thinking about having to go clothes shopping with her in the morning at the beginning of the school year. That was so hard.

I'm the oddball here, LOL. Getting up early to go shopping with my mom were so exciting to me when I was a kid. We LOVED Black Friday, and we'd go as early as possible, like 5-6 am. I loved it then. Now it sounds like a nightmare.

 

[Booble]

my mother did not drive. I never went anywhere with my own mother, except on Sunday when Dad and a car, were home.

I used to get car sick too. My mother's car had a stench. And the AM radio had static. The whole experience was yukky. But I guess better then the hand-me-downs I had to wear before that. I would beg her to let me have Levi's and not have to wear the "ToughSkins" that were long out of style.

Appointment time: 1:30 is a bad time for me. I'm pretty sure it's a blood sugar thing.

I used to joke that I'm not a morning person -- and I'm not a night person either. I have moments of energy and normality but they are hard to predict. I use my tricks-of-the-trade to have more of them when I need them. Or at least to get through whatever I have to get through.

ChristianKatz: That's so great that you have fun memories of shopping with your mom.

Worst part of shopping? Trying on clothes or standing in line?

 

[lenora]

For almost 40 years I've suffered from sleep problems of one sort or another. Two trips to a sleep clinic left me with no answers (par for the course), except for a prescription of trazodone (I think) which did absolutely nothing, as all other sleep meds have. This included the highest dose of the so-called "Date Rape Drug"....after which I was awake all night.

I seem to have a messed up disorder of sleeping for maybe 2 nights normally and then 4 or 5 that aren't. Left to my own devices, I find my best sleep is from 4:00 a.m. until 10:00 a.m., but the world just doesn't work that way, does it?

I'm not in a bad or even sleepy mood, but last winter I had the nasty habit of falling asleep suddenly with a hot cup of tea in my hands. Fortunately I never burned myself.

In my case it seems to come down to this: About 35 yrs. ago I had brainstem surgery and it seems it was very close to the sleep center of the brain. Prior to that I also had a pituitary tumor and spinal cord surgery. I was having sleep problems even before all of the above, though.

I've tried to make friends with it....will come out and work on the computer, enjoy the quiet of being on the porch in the summer, have a fire in the winter and if I nod off, fine....if I don't, then so be it. I'm quite calm about it, my husband worries far more about it than I do.

We'll have company for coffee in the mornings (not as much as usual, everyone seems to be sick, moving or dying). Afternoons are out though. I'm just too exhausted. Alcohol only makes it worse, so I avoid that and have for years.

I strongly dislike being in the hospital b/c there are blood techs that start coming in about 2:00 a.m., nurses or aides all night, have to go the bathroom, etc. Well, you know. I definitely steer clear of all sleeping pills, they may work for a night or two and then what little sleep I get is totally disrupted for weeks.

How is it possible to stay awake that long? I don't know, but I'm a truthful person and this is my life. I used to sleep normally when younger, except when in and out of an orphanage we went to. Perhaps the pattern was set then.....who knows, and no one can help. I have an incredibly understanding neurologist who has seen the reports, knows about the surgeries and has tried me on everything, natural and medicinal from A-Z. I suggested that we just give it up and I'll accept it. Odd, as his wife now has a serious neurological disease, is dying and has the same sleep problems.

I love to look at my husband as he just decides he's going to fall asleep...and within minutes it happens. His sleeping makes life easier for both of us. He doesn't hear me, I don't feel that I'm disturbing him, etc.

Of course there are days when I don't function cognitively....and the telephone can wear me out without any doubt. I am in groups and have been a founding member of some (not PR) for many years. This helps, although sometimes I have to too much work to do and too much used to be expected of me. We each have to judge this for ourselves.

So while I don't have any words that can help, I can tell you that no, you aren't alone, and there are more of us than you may think. Sometimes it's almost as if I'm hyper-competent at night, don't quite know how to explain it. Other times I shouldn't be anywhere near a computer. Anesthetic makes everything worse, so I try to avoid it....sometimes it's absolutely needed though. Oh, I also have epilepsy and autoimmune encephalitis...do they play a role? Have other problems, but they wouldn't.

I do wish you well as you try to find an answer. Yours, Lenora.

 

[SpiralOut]

@lenora thank you for the response. I'm just throwing this out there, since you say nothing else has worked. It's conceivable that you have fast-cycling non-24... Being 'on-cycle' only a couple of times a week would imply going right round the clock in that time, which would mean a roughly 27.5 hour (subjective) day. Long, but not unheard of (indeed the longest I think I have heard of is 32 hours, believe it or not).

The only way to find out would be to throw out any notion of 'this is the correct time to sleep', go to bed when you feel like it, and keep records for a while and see what transpired.

 

[lenora]

@SpiralOut.....thanks for your reply. I don't even know if I have a circadian rhythm any longer. I only go to sleep when I feel like it, because otherwise it's totally pointless. I end up in even worse condition. Chances are good that I'll sleep tonight as I feel excessively tired, but we'll see.

My doctors have finally told me to sleep when I feel like it. I would say that's exactly what I do. It's a pest though! Thanks for your kind thoughts. Yours, Lenora.

 

[Hip]

I know of one other person in the non-24 community who has CFS, and a couple of others who had CFS-like symptoms for some years that were fixed by tryptophan in one case, and B12 injections in the other.

I have a circadian rhythm shift, and find I go to bed very late (5 am in the morning), and sleep until the afternoon. Whenever I try to straighten up my hours back to normal, I find within a month or two I invariably slip back into this shifted rhythm.

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

The Australian B12 oils (which provide I higher systemic dose than a B12 injection) help reduce my bran fog, but do nothing for my circadian rhythm shift.

it has been shown that doing light therapy for a period of time (again varies very much on the individual) using a lightbox or (far better) specialised light therapy 'glasses', can 'entrain' both DSPD and Non24 people to a regular schedule.

I use seasonal affective disorder (SAD) lamps every morning for several hours throughout the dark UK winter, to keep my SAD depression at bay. These SAD lamps work very well for my SAD depression, but unfortunately have no effect on my circadian rhythm shift. Neither has reducing blue light in the evening helped.

 

[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?

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.

I use seasonal affective disorder (SAD) lamps every morning for several hours throughout the dark UK winter, to keep my SAD depression at bay. These SAD lamps work very well for my SAD depression, but unfortunately have no effect on my circadian rhythm shift. Neither has reducing blue light in the evening helped.

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 :/