This is extremely common in long term ME patients. I sleep when I need to now, I live alone, but last time I had to regularly be up and about during the day, when I was studying biochemistry, my OI got very severe due to sleep deprivation. I lost count of how many times I collapsed in stairwells.
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I've gone nocturnal again :(
- Thread starter Arnie Pye
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Alvin
Senior Member (Voting Rights)
I've asked about it on here and the other place, it seems to be more common but not extremely common. I understand what you mean by sleeping when needed. I can't do naps during the day (usually can't fall asleep) but i have been letting my body clock do its thing and i'm currently close to 12 hours a month of forward movement
Alvin
Senior Member (Voting Rights)
Very interesting, what is the typical rate of sleep phase advancement?
If I let my body clock do its thing, my circadian cycle stretches out to about 24.5 hours, so I will slowly cycle around the clock over a month or so.
Best way I have found so far to try keeping synced with 24 hours seems to be having the bedroom window curtains wide open and my bed placed so the rising sun hits my face, presumably it resets the pineal gland.
I have just got back from a visit to the ENT doctor, and the scans and direct inspection clearly show an obstructed nasal passage. Have been booked in for an overnight sleep apnea study, with possible subsequent surgery to open up the passageway.
Now I have to make sure my sleep cycle is normal hours for the clinic. i.e. Go to sleep late evening, get up just after sunrise. Don't think they will be too pleased with me going to sleep at 4am and getting up at midday.
Best way I have found so far to try keeping synced with 24 hours seems to be having the bedroom window curtains wide open and my bed placed so the rising sun hits my face, presumably it resets the pineal gland.
I have just got back from a visit to the ENT doctor, and the scans and direct inspection clearly show an obstructed nasal passage. Have been booked in for an overnight sleep apnea study, with possible subsequent surgery to open up the passageway.
Now I have to make sure my sleep cycle is normal hours for the clinic. i.e. Go to sleep late evening, get up just after sunrise. Don't think they will be too pleased with me going to sleep at 4am and getting up at midday.
Alvin
Senior Member (Voting Rights)
A bit faster then mine. Light therapy has no effect on me, i've been prescribed the full spectrum light, the blue light blocking glasses, the melatonin, but nothing touches mine at all. I lie, acetyl carnitine touched it but only for a week or so, then it went back to normal
If you do have sleep apnea it can affect the circadian rhythm (among other things), but at least it is treatable
MeSci
Senior Member (Voting Rights)
That's strange - when I searched for info on this I found that melatonin is supposed to be good for winter depression: https://www.sciencedaily.com/releases/2006/05/060501113832.htm
and several others.
Do you have a link?
I don't think we know enough to discuss what is typical. In my case it was about twenty years from severe insomnia to non-24 ... maybe. Or maybe its I didn't see the non-24 because I was trying to stay within normal hours. Or maybe there are other factors. In a small support group I am in three of us are like this, and maybe more ... I have a vague thought it might be four. It only gets discussed from time to time. Its also possible that its a distinct subgroup. In any case the sleep issues slowly worsen over time, as in years, and nothing halts this progression that any of us have tried, including sleep hygiene and melatonin. Melatonin does nothing for me, and sleep hygiene results in severe chronic sleep deprivation, a worsening of OI, and lots of minor injuries.
I did early morning sunlight for years, it helped in the early days. Light seems to have little effect now.
Lisa108
Senior Member (Voting Rights)
Sorry, can't find the link at the moment. It was a study about the effect of light therapy.
That is interesting. According to your link, melatonin here has been used
- "low dose" ('Melatonin did not cause drowsiness, because the doses used were lower than what is usually taken at bedtime.')
and
- at different times for "night owls" (low dose melatonin in the afternoon or evening) and "morning larks" (low dose in the morning).
The theory behind that is that melatonin can adjust the misaligned circadian rhythm- by making one sleepy at the "right" time.
Light therapy works presumably the other way round: making one awake at the "right" time.
A combination of both might be most effective, then?
But (there always is a 'but', isn't it?) maybe ArniePye has already high levels of melatonin or is more sensitive to melatonin.
And reading a bit more into the subject, the pathways of tryptophan, serotonin and melatonin are a lot more complex than I thought.
Wishing us all a good night's sleep tonight!
Alvin
Senior Member (Voting Rights)
I have not tried it for a while, so it will be interesting to see if it still works.
Arnie Pye
Senior Member (Voting Rights)
The diagram I have found helpful when investigating the pathways for tryptophan, serotonin and melatonin is this one :
https://en.wikipedia.org/wiki/Tryptophan#/media/File:Tryptophan_metabolism.svg
Going down the left hand side of the diagram,
Tryptophan --> 5-HTP --> serotonin --> N-acetyl-5-HT --> melatonin
I've never supplemented tryptophan, but I've been supplementing 5-HTP for depression for approximately 7 years (but remember I've had sleeping problems for about 50 years). I only take a small dose of 50mg. For a long time I was taking it every day, but in recent months I've reduced it to 5 days a week. If or when I feel able to reduce further I will. I'm not in a hurry.
Having taken 5-HTP for so long I can safely assume that I should have plenty of serotonin and melatonin by conversion. This may explain why I can only tolerate tiny doses of melatonin. I didn't try melatonin for the first time until ages after I had started 5-HTP, so I have no idea how I would have reacted to it before the 5-HTP increased my melatonin levels.
I've had winter depression all my life. I think that since taking 5-HTP my winter depression has been less bad than it used to be.
I would think that all these things are related in some way. I'm just not sure how. I don't think I'd cope without the 5-HTP completely.
I often get moderate SAD when it rains for more than a few days straight, and hides the sun. Soon as the sun comes back out, I start feeling a lot better.
Runs in the family, at least two first-degree relatives have the same response.
Arnie Pye
Senior Member (Voting Rights)
One thing that 5-HTP does is it raises cortisol. I don't know what the mechanism is that makes that happen. I imagine that would cause adverse effects in quite a lot of people.
I have very occasionally taken more than 50mg 5-HTP, and my reaction is to get the jitters and internal shakes, and feel rather anxious. But I tolerate 50mg with no issues.
It does surprise me that manufacturers of 5-HTP often make a minimum dose of 100mg. It's harder to get small doses (like 50mg) than it is to get huge doses. I've even seen 400mg doses for sale.
Lisa108
Senior Member (Voting Rights)
Yes, and it seems that synthetis, uptake or metabolism can go awry at any of these steps...
I've tried tryptophan, 5-HTP and Melatonin so far. None worked *, although my serum tryptophan is low...
* Melatonin seemed to work initially but the effect faded...
(edited for clarity)
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Hi @Arnie Pye ive not read all the thread I’m still pretty new to this always been a night owl but only struggled with getting to sleep in the last 10/15 years. Which is when my undiagnosed gradual onset happened. I’m having a bit of a struggle at the moment since the change in the hour I’m still on winter time so even more out than normal. 1mg Melatonin helps me get to sleep I only started taking it in December. But it isn’t helping me get adjusted to summer time which I thought it would help with. Do you feel at your worst when you wake up? I feel better in afternoon and evening- I find I have some physical and cognitive energy late evening which I think is really unhelpful in getting to sleep on anything like a normal timetable as I use the energy to do stuff then need time to relax enough to sleep. I mentioned I’ve always been a night owl I used to read a LOT at night when younger.