Sleep reversal advice

[frederic83]

What that specialist/psychiatrist had you do is a treatment called "Chronotherapy" and it now known to push many people with Delayed Sleep Phase Disorder into N0n-24. It is no longer recommended but unfortuately some doctors don't keep up on the science and are still telling patients with DSPS to do it.

Do you think this is what happened to you??

I asked my sleep doctor about Chronotherapy and what I had read about it causing N24 and he said yes it is no longer recommened and to NOT try it.

Well, I had first a delayed sleep for a few years at the beginning of my CFS then it changed suddenly into a non-24h sleep disorder, and I've managed it with melatonin for a while now. I'm not suffering the non-24h sleep disorder anymore.

I went to see her recently for the delayed sleep disorder, because I fall asleep at 3-4am, even with melatonin, whatever the dose is. She advised the chronotherapy, telling me to go to bed earlier (2:30am for 2 weeks, then 2:00am for 2 weeks...) but I know it does not work.

 

[Hip]

What I found helps a lot in controlling the circadian rhythm shift/inversion of ME/CFS is the pre-emptive administration of melatonin.

By pre-emptive, I mean don't wait for the end-of-day feeling of sleepiness to arrive before you take melatonin, and then take melatonin as you go to bed, because this sleepy feeling of wanting to go to bed is often very delayed in ME/CFS.

Instead, take the melatonin towards the end of the day while you are still feeling awake, and let the melatonin itself create the feeling of sleepiness.

I think lots of people only take melatonin at the moment they go to bed, to help them sleep better, or to help them get to sleep faster. But what I do is take a melatonin tablet around 1.5 hours before my intended time of going to bed, while I am still working on my computer, or watching TV, and then I find this melatonin tablet will create a nice feeling of sleepiness and desire for bed after around 1.5 hours.



More details of this simple technique in this thread:

Sleep Cycle Inversion (Awake At Night, Sleeping During Day): A Simple Technique Fixed This For Me

 

[IreneF]

Not only do I have delayed sleep, but every so often I. just. sleep. all. day. I often feel okay, I get up, eat something, then go back to sleep and get up when it's getting dark. I try to respect my sleep needs but this is getting more frequent.

Today my cat crawled under the covers with me. Very pleasant.

 

[roller]

Not only do I have delayed sleep, but every so often I. just. sleep. all. day. I often feel okay, I get up, eat something, then go back to sleep and get up when it's getting dark. I try to respect my sleep needs but this is getting more frequent.

Today my cat crawled under the covers with me. Very pleasant.

have you ever wondered, your cat could have the same "disease" ?

 

[IreneF]

have you ever wondered, your cat could have the same "disease" ?

Or maybe I'm becoming feline.

 

[frederic83]

What I found helps a lot in controlling the circadian rhythm shift/inversion of ME/CFS is the pre-emptive administration of melatonin.

The administration of melatonin does not impact my sleep. I usually take it at 2am and fall asleep at around 3am, half an hour or an hour later the administration.
But If I take it, let's say, at 1am or midnight. I don't sleep before 3am, whatever the dose or the hour of administration is.

If I don't take melatonin at all, I will fall asleep way beyond 3am.

When I first tried melatonin, and when I took the pills sublingually at midnight, I was sleeping at 1am. Now, it does not work that well anymore, although I need it.

 

[Hip]

But If I take it, let's say, at 1am or midnight. I don't sleep before 3am, whatever the dose or the hour of administration is.

I guess this approach does not work for everybody.

What I find myself is that 1.5 hours after taking melatonin while still working at my computer (I use a 5 mg dose), I begin to feel sleepy, and I find I no longer want to continue working on the computer due to this sleepiness, and feel the need to go to bed. If I go to bed at this point, then I will get to sleep quickly.

But this only works if you take the melatonin near the time you would be going to bed normally. Let's say you normally go to bed a 5am. If you want to start going to bed a litter earlier, then you could take the melatonin at say 3am, and then by about 4.30am you will feel sleepy, and if you go to bed at that time you will go to sleep quickly.

So now you have managed to get to sleep at around 4.30am, rather than after 5pm.

Then after two or three days taking melatonin at 3am, you can take it slightly earlier, at say 2:30am, so that you will start feeling sleepy at around 4.00am, and will go to bed at this time.

If you keeping taking the melatonin slightly earlier every few days like this, then slowly you can get yourself synchronized to bed a litter earlier each day.

 

[SuzieSam]

@Hip my daughter takes 6mg of melatonin sublingually at about 10pm. She falls asleep at about 11:30pm or midnight, which is much is too late for her, with fibromyalgia making her exhausted too. Without it, she is wide awake till morning. Then her own melatonin kicks in and she zonks out.

The really annoying thing when you have to take melatonin, then get up at 7am, is that there's nothing that stops your own wonky melatonin from pumping at that stupid hour! She forces herself out of bed - she's 17 - and is groggy all day, till about 2pm. It's SO hard. She takes Ritalin to sharpen her brain up. And then really needs to sleep all weekend.

I'm going to tell her to try taking her melatonin an hour and a half earlier. She always refuses because late at night is when she finally feels good, after feeling wrecked all day.

@frederic83 My daughter started out on 3mg when she was 10. It was only effective for a year, and we had to keep on increasing it till she's on her current dose of 6mg. Sounds like you need to go up.

 

[SuzieSam]

Not only do I have delayed sleep, but every so often I. just. sleep. all. day. I often feel okay, I get up, eat something, then go back to sleep and get up when it's getting dark. I try to respect my sleep needs but this is getting more frequent.

Today my cat crawled under the covers with me. Very pleasant.

I don't have a sleep disorder, officially, but I sleep all night, then also sleep for hours in the damn day. If I don't let myself sleep when I feel the overwhelming exhaustion, I get a migraine. There's no fighting it.

I hate it, but at least I have the comfort of my snuggly pair of dogs. I can't believe that your cat only just discovered the joys of snuggling with his/her warm human under the covers! It's one of the perks of being a pet of a chronically exhausted person! Food, love, and snuggles in bed.

 

[IreneF]

I don't have a sleep disorder, officially, but I sleep all night, then also sleep for hours in the damn day. If I don't let myself sleep when I feel the overwhelming exhaustion, I get a migraine. There's no fighting it.

I hate it, but at least I have the comfort of my snuggly pair of dogs. I can't believe that your cat only just discovered the joys of snuggling with his/her warm human under the covers! It's one of the perks of being a pet of a chronically exhausted person! Food, love, and snuggles in bed.

She discovered it a while back, but she doesn't do it very often. It's been cold lately. Maybe that's why she did it.

I don't have a sleep disorder, "officially", I just act like I do. There seems no advantage in going to the trouble of getting it diagnosed.

 

[realturbo]

This study on using glycine may be of interest / relevant on this thread.

"In human volunteers who have been continuously experiencing unsatisfactory sleep, effects of glycine ingestion (3 g) before bedtime on subjective sleep quality were investigated, and changes in polysomnography (PSG) during sleep were analyzed. Effects on daytime sleepiness and daytime cognitive function were also evaluated. Glycine improved subjective sleep quality and sleep efficacy (sleep time/in-bed time), and shortened PSG latency both to sleep onset and to slow wave sleep without changes in the sleep architecture. Glycine lessened daytime sleepiness and improved performance of memory recognition tasks. Thus, a bolus ingestion of glycine before bedtime seems to produce subjective and objective improvement of the sleep quality in a different way than traditional hypnotic drugs such as benzodiazepines."

I think there are other studies that support this as well.

 

[SuzieSam]

@IreneF I think maybe I'd qualify as having "hypersomnia", but anyway there isn't a cure for that really - just "wake up" drugs. I tried those, and ended up even more exhausted and ill.

@realturbo that's very interesting - I've been on another thread talking about bone broth - which is rich in glycine! I think I'd prefer a bowl of chicken broth to a "a bolus ingestion of glycine"

 

[frederic83]

If you keeping taking the melatonin slightly earlier every few days like this, then slowly you can get yourself synchronized to bed a litter earlier each day.

@frederic83 My daughter started out on 3mg when she was 10. It was only effective for a year, and we had to keep on increasing it till she's on her current dose of 6mg. Sounds like you need to go up.

I'm going to up the dose, around 6mg, and take it earlier. Will see.

 

[realturbo]

@SuzieSam I suppose the bone broth is a better (tastier?) way to get some glycine into your body if your not vegetarian. The powder form of glycine that I have taken is actually quite nice, and a couple of grams in a hot drink such as milk can add just the right amount of sweetness. Incidentally, I came across this fascinating write up on a "High-Dose Glycine Treatment of Refractory Obsessive-Compulsive Disorder and Body Dysmorphic Disorder in a 5-Year Period." Treatment with glycine over 5 years led to robust reduction of OCD/BDD signs and symptoms where all other interventions had failed. I found it to be a pretty interesting read...

 

[SuzieSam]

@realturbo It's astonishing how we all forget that we are just a mass of hundreds of chemicals that are usually miraculously kept in perfect balance to maintain both physical and mental health.

If we can boost our intake of nutrients instead of using toxic drugs to treat disorders like OCD, that's fantastic. It points to them being caused by a deficiency in glycine.

There's a psychiatrist called Dr Kelly Brogan who doesn't prescribe antidepressants - just lifestyle changes and looking for physical causes like nutrient deficiencies and autoimmunity.

Bone broth just isn't appealing at all to me right now - sprinkling powder into my hot chocolate is, though! Thanks for that.

 

[TrixieStix]

I'm going to up the dose, around 6mg, and take it earlier. Will see.

6mg is 20 times the recommended doseage!! I urge you to read this article. Yes it's Huff Post but it outlines the research and science (with links to studies) regarding melatonin use. Sadly people are misinformed about how melatonin should and should not be used.

http://www.huffingtonpost.com/entry/melatonin-dosage-and-risks_us_56deff8ce4b03a40567a1e1e

 

[TrixieStix]

@Hip my daughter takes 6mg of melatonin sublingually at about 10pm.

6mg is 20 times the recommended doseage!! I urge you to read this article. Yes it's Huff Post but it outlines the research and science (with links to studies) regarding melatonin use. Sadly people are misinformed about how melatonin should and should not be used.

http://www.huffingtonpost.com/entry/melatonin-dosage-and-risks_us_56deff8ce4b03a40567a1e1e

 

[mission impossible]

6mg is 20 times the recommended doseage!! I urge you to read this article. Yes it's Huff Post but it outlines the research and science (with links to studies) regarding melatonin use. Sadly people are misinformed about how melatonin should and should not be used.

http://www.huffingtonpost.com/entry/melatonin-dosage-and-risks_us_56deff8ce4b03a40567a1e1e

My young lad has suffered from complete sleep reversal for about 18 months now. It came on gradually with him being unable to fall asleep later and later until he got to the point in the last few months where he rarely fell asleep before 8am in the morning, with the result he was sleeping most of the day.

Anyway he was desperate to try and get back into some kind of sleep rhythm so a few weeks ago he started experimenting with forcing himself to stay awake longer and longer during the day, hoping to push his sleep time towards more normal hours. He has now managed to get to a point of sleeping from about 8pm and then wakes up about 4 or 5am in the morning.

The thing is that he is totally exhausted during the day with this regime and I wonder is he doing more harm than good or should he just keep persisting with it? Anyone got any experience with this?

 

[mission impossible]

Melatonin helps with sleep a little for me sometimes, but doesn't help setting sleep rythm in me, but methyl b12 a start of your day does seem to help me get back into the sleep rythm I want, because if you take say 1mg methyl b12 at start of day then at end of day you feel sleepy and are able to go to sleep.(on normal days I just take 500mcg methyl b12 as my maintenance dose as higher doses I get over stimulated if taken every day, for me personally)

However, trying to go to sleep earlier and getting up earlier, even when it works, does make me more exhausted over time, whereas if I got bed late, ie 4am and even if I don't get sleep until 8am and wake up in the 3-6pm zone, which is my natural flow with this illness I am less worse, so I think trying to fight this natural flow which I have done many times over past decade, is a bad idea, and now I just accept this aspect of it, unitil I find a cure!.
I know for eductation this if prob not what you need to here, but it is way it is I find. So share your concerns that your son could make himself worse, so be careful. IMHO.

 

[frederic83]

6mg is 20 times the recommended doseage!! I urge you to read this article. Yes it's Huff Post but it outlines the research and science (with links to studies) regarding melatonin use. Sadly people are misinformed about how melatonin should and should not be used.

http://www.huffingtonpost.com/entry/melatonin-dosage-and-risks_us_56deff8ce4b03a40567a1e1e

Maybe it is the dosage for normal people with mild sleep problems, not PwME, right ? I never tried that tiny dose. But if I take 1mg, I don't sleep at all or just a few hours and I wake up in the morning, not able to fall asleep and I swallow my melatonin pills again. There is certainly a tolerance that builds up, but I need to sleep !

Sometime, I have to wake up for an appointment, it is hard for me to take a nap in the afternoon or the evening. So I take 1mg of melatonin to take a nap and I usually catch up my lacking sleeping hours. I sleep around 8 hours per day, I really feel it if I sleep one hour less.