Sleep reversal advice

[JoanDublin]

I think some ME patients react very badly to sleep restriction. So if it's not working, then sleep needs to be the priority.

I fear you may be right. He is still managing to get nighttime sleep and stay awake at daytime but today is pretty bad. He's exhausted, dizzy and full of nausea. We may have to rethink the strategy

 

[Martial]

The only thing he was tested for as far as I know was EBV and he was positive for that. That's when he first got his diagnosis of Post Viral Illness which has now been changed to CFS and ME from another doc. I would really like him to be tested more. Is there such a thing as a viral panel that I could just ask for? I would love to think there was such a thing as a viral screen but not sure if it works like that or you have to ask for specific tests to check for specific viruses

There are various panels he can have done but I also think it would be worthwhile to have some bacterial panels as well. It really depends on the doctor but is he not having any treatment for possible pathogens right now? Next time you go to the doctor if its a specialist for this kind of stuff they should know what to run. I would also think it worth while to get IgeneX testing for things like lyme and co infections, mold toxicity testing, and other compounding things whether primary or secondary as cause for his ill health. Have you looked into methylation treatment it would be worth while to start on something like that as well, also checking for various deficiencies that may be going on. Make sure to see a doctor with a background in dealing with these kinds of conditions. Most standard MDs will not do much because it is not in their scope of knowledge to deal with things like this.

 

[Aileen]

Has your son had a sleep study done? Some patients find treatable sleep issues this way. Try talking to the doctor just about his sleep issues.

I'm another long time patient and have gone through multiple types of sleep issues. The "coming alive a couple hours before bedtime and up all night" issue is a big one for me. Last year I almost completely stopped sleeping!!

I started the tricyclic antidepressant amitriptyline last year. It is used at a much lower dose than for depression, starting at 10mg, the lowest dose pill available, for sleep and pain - things like migraine prevention. For depression it's usually around 150mg sometimes more.

I found that taking only 1/4 tablet, a mere crumb, put me out like a light. Unfortunately there was a hangover effect in the morning. I was on it mainly for migraines so had to get the dose up a little higher and had problems so had to stop. Something to consider but would not be my first choice, especially with a child.

At present I have started the prebiotic Larch Arabinogalactan (LAG). A surprising and welcome effect was that it altered my sleep. I don't use an alarm clock or have any fixed schedule. Thanks to LAG I am now waking up around 8am and going to bed around 1pm.

Please note that there is more than one type of LAG. The one that helped my sleep is called FiberAid. I get mine from Swanson's [here]. It is their brand. I started with just 1/4tsp once daily. It comes in capsules but I have more control of the dose with the powder. Mixes easily in water and is tasteless.

I'm now trying the other one (ResistAid) but as others have reported it seems to be messing up my sleep. Am changing the timing of the dose. For more info, see the Resistant Starch thread.

 

[caledonia]

I had this problem - actually even worse, just like the lady who reported her sleep moving forward one hour per day.
This was one of my worst, most intractable problems which persisted for many years and no doctor could ever figure it out. However, I now have it mostly fixed.

First off, I would suggest you don't force waking up earlier, setting alarms and all that. You will just feel like crap, and then after a few weeks, you'll give up out of total exhaustion and revert back to your "naturally unnatural" pattern anyway.

Here's what I did and why I think it worked:

1) Stay off the computer at night. The computer (and any other light emitting devices like iPod, tv, and "daylight" bulbs) all emit blue light. In nature, blue light is emitted in the morning - it wakes you up and signals your pineal gland to produce serotonin. In the evening, the light is amber, which signals your body to produce melatonin, and helps you go to sleep. You can assist this process by wearing BluBlocker type sunglasses (amber colored) in the evening. Doing this stopped the forward movement of my sleep cycle. Now I was just awake all night and slept all day, but at least I had a regular cycle.

2a) Methylation protocol - neurotransmitters. The methylation protocol is working to help generate more neurotransmitters, (serotonin and melatonin) which are important for sleep. The other part of this is to make sure the gut is working well, as 80% or so of the neurotransmitters are produced in the gut.

2b) Methylation protocol - adrenals. If your adrenals are not functioning well, the adrenal response will become weak, and the normal cycle will reverse. You will start to go to sleep later and later and wake up later and later. You will feel best in the evening or overnight (when your cortisol is at it's highest). The methylation protocol is working to fix my adrenals. I'm now waking up around 11am in the morning. I go to bed about 10pm, with a three hour wakeup in the middle of the night. Still sleeping 10-12 hours a day. So not perfect yet, but definitely getting there.

The other part of the adrenals is that if they are weak, you'll be leaking out electrolytes like crazy. This includes magnesium and potassium. If you're low in these, your feet or limbs will twitch like mad all night long, semi-waking you up and making you feel exhausted when you awake. I'm supplementing with these. The better my adrenals get, the less magnesium I need.

=-=-==-
I've tried all this other stuff everyone else is suggesting, what I call "band-aid supplements" - taking 5htp, melatonin, taurine, etc. I've tried all kinds of adrenal supplements. None of it really worked or actually made me feel worse. Methylation is getting to the root of the problem, and that's what's working for me.

If you want to see what's going on with your son's adrenals, you would do a 24 hour adrenal saliva test. You can get those through a naturopath or anymore you can order them online direct.

I have many good links for methylation in my signature below, starting with the Methylation Made Easy videos. A methylation protocol should also help with many other aspects of this disease, not just sleep.

 

[Sidereal]

1) Stay off the computer at night. The computer (and any other light emitting devices like iPod, tv, and "daylight" bulbs) all emit blue light. In nature, blue light is emitted in the morning - it wakes you up and signals your pineal gland to produce serotonin. In the evening, the light is amber, which signals your body to produce melatonin, and helps you go to sleep. You can assist this process by wearing BluBlocker type sunglasses (amber colored) in the evening. Doing this stopped the forward movement of my sleep cycle. Now I was just awake all night and slept all day, but at least I had a regular cycle.

I would second the blue blocker recommendation. This cheap & simple intervention has helped my sleep greatly. I used to frequently be unable to fall asleep until 6 or 7 am. This never happens anymore since I started wearing amber glasses in the evenings for a couple of hours before bedtime.

 

[*GG*]

I would second the blue blocker recommendation. This cheap & simple intervention has helped my sleep greatly. I used to frequently be unable to fall asleep until 6 or 7 am. This never happens anymore since I started wearing amber glasses in the evenings for a couple of hours before bedtime.

Can you still be on the computer then with the glasses on and have it be effective?

GG

 

[Sidereal]

Can you still be on the computer then with the glasses on and have it be effective?

GG

Yes.

 

[caledonia]

Can you still be on the computer then with the glasses on and have it be effective?

GG

Maybe for a few minutes. I have found there is something about being on the computer that charges me up, regardless of whether I'm wearing amber glasses, and/or have Nocture, Flux or other apps that turn your computer screen an amber tint.

Maybe I'm more sensitive than others. I have gotten to point to where I can watch tv without the glasses on. Just no computer.

 

[Martial]

Maybe for a few minutes. I have found there is something about being on the computer that charges me up, regardless of whether I'm wearing amber glasses, and/or have Nocture, Flux or other apps that turn your computer screen an amber tint.

Maybe I'm more sensitive than others. I have gotten to point to where I can watch tv without the glasses on. Just no computer.

i started using flux quite some time ago and dim my cell all the way for the screen, even during the day I can't believe I used to stare at screens that bright now. I can see how it messes with your brain into thinking its day time, also its probably not the greatest thing for your eyes to stare at regardless. I also find even with the most amber settings on F.lux I still need to keep it all off at least two hours before bed anyways.

 

[TrixieStix]

ME/CFS has altered my circadian rhythm and caused what is called "Delayed Sleep Phase Disorder". I saw a wonderful sleep doctor about it and he said that there are no effective treatments for DSPS. That my circadian rhythm is what it is and since I am no longer able to work and have outside responsibilities to attend to that I should accept my body's preferred sleep schedule.

I sleep from 6:30am-5:00pm and when I am forced to switch to a "normal" schedule for a day or 2 due to a family function, doctor appt, etc my pain level gets much worse, and my quality of sleep is awful.

Also for me whether or not I watch tv, use computer, etc in the evening does not make a difference.

 

[alex3619]

This is so familiar. I am currently moving my sleep cycle forward by one hour each say. Not exactly sleeping well, but I've progressed to getting up at midnight. Almost morning! I know I won't be able to stabilize at a "normal" cycle for more than a few weeks. It drives my husband nuts. He doesn't have a lot of sympathy for what it does to *me*.

That was my pattern for many years. I had a temporary cessation of my circadian issues recently. Due to a medication I was on, a calcium channel blocker, I think lercanidipine, I was sleeping less and less until I reached five to ten minutes a handlful of times a day. Then I figured out it was the meds. For about a month after switching meds my circadian pattern was normal, but at about six weeks its slowly going back to the way it was ... maybe. This is happening now, and its hard to be sure.

 

[JoanDublin]

ME/CFS has altered my circadian rhythm and caused what is called "Delayed Sleep Phase Disorder". I saw a wonderful sleep doctor about it and he said that there are no effective treatments for DSPS. That my circadian rhythm is what it is and since I am no longer able to work and have outside responsibilities to attend to that I should accept my body's preferred sleep schedule.

I sleep from 6:30am-5:00pm and when I am forced to switch to a "normal" schedule for a day or 2 due to a family function, doctor appt, etc my pain level gets much worse, and my quality of sleep is awful.

Also for me whether or not I watch tv, use computer, etc in the evening does not make a difference.

Hi there. Nice to hear about your experiences. My post was from two years ago and his sleep patterns are still in complete reversal. Like you he forces himself to switch to a normal schedule every so often when he is due for a hospital appt or some family celebration he really doesn't want to miss but it takes enormous effort forcing himself to stay awake longer and longer for several days until he has a daytime window of being awake.

For example in order to be able to take part in Xmas day, he is planning that from the 20th Dec he will start pushing his sleep forward more and more each day. That's cutting it fine because normally it takes about a full week of this to have any chance of being awake for longer than a couple of hours.

From experience it will exhaust him totally, increase all his other symptoms for several weeks afterwards and generally cause a bit of mayhem in his system but he says it's worth it just so he can spend Xmas day downstairs and awake....well sort of awake. He will undoubtedly fall asleep on the sofa during the day

 

[alex3619]

Like you he forces himself to switch to a normal schedule every so often when he is due for a hospital appt or some family celebration he really doesn't want to miss but it takes enormous effort forcing himself to stay awake longer and longer for several days until he has a daytime window of being awake.

There are a few of us who do this. I feel like we're almost in a club, an unfortunate club, but I and others can relate.

 

[TrixieStix]

Hi there. Nice to hear about your experiences. My post was from two years ago and his sleep patterns are still in complete reversal. Like you he forces himself to switch to a normal schedule every so often when he is due for a hospital appt or some family celebration he really doesn't want to miss but it takes enormous effort forcing himself to stay awake longer and longer for several days until he has a daytime window of being awake.

For example in order to be able to take part in Xmas day, he is planning that from the 20th Dec he will start pushing his sleep forward more and more each day. That's cutting it fine because normally it takes about a full week of this to have any chance of being awake for longer than a couple of hours.

From experience it will exhaust him totally, increase all his other symptoms for several weeks afterwards and generally cause a bit of mayhem in his system but he says it's worth it just so he can spend Xmas day downstairs and awake....well sort of awake. He will undoubtedly fall asleep on the sofa during the day

I understand what he goes through and it's tough. I would probably be inclined to disrupt my sleep more than I do because I feel guilty about missing things, but thankfully my husband is good about making sure I only choose the most important things. After it took me over a week to recover from Thankgiving this year he has decided from now on I can't do both Thanksgiving and Christmas and only get to pick 1 each year. I agree with him. Next year I will pick Christmas.

I hope you and your son have a nice Christmas together. Sending you hugs from afar.

 

[alex3619]

Thankgiving this year he has decided from now on I can't do both Thanksgiving and Christmas and only get to pick 1 each year.

A few years back I tried only doing Christmas Day OR New Years. My Januaries were soooo much better.

 

[frederic83]

Hi there. Nice to hear about your experiences. My post was from two years ago and his sleep patterns are still in complete reversal. Like you he forces himself to switch to a normal schedule every so often when he is due for a hospital appt or some family celebration he really doesn't want to miss but it takes enormous effort forcing himself to stay awake longer and longer for several days until he has a daytime window of being awake.

For example in order to be able to take part in Xmas day, he is planning that from the 20th Dec he will start pushing his sleep forward more and more each day. That's cutting it fine because normally it takes about a full week of this to have any chance of being awake for longer than a couple of hours.

From experience it will exhaust him totally, increase all his other symptoms for several weeks afterwards and generally cause a bit of mayhem in his system but he says it's worth it just so he can spend Xmas day downstairs and awake....well sort of awake. He will undoubtedly fall asleep on the sofa during the day

I have the same experience as your son. Many years ago, when my CFS was better, I was able to shift my sleep pattern when I was falling asleep too late. And my internal clock could handle the reset.

Then I had a non-24-hour sleep–wake disorder, it means that I was falling asleep at midnight for example, then 1 am..., 6 am, 10 am, etc.
I plotted a graphic years ago to highlight the patterns, and it was around 1 to 2 months for a 24h shift around the clock. That was really bad for my health.

The supplementation did not help. Forcing myself to wake up and be a zombie during the day neither. I never fall asleep earlier or just sleep - like a nap - from 8pm to 10pm, then I'm like an owl until 4 am.

When I have a medical appointment, I forced to wake up then take a nap later, but I'm exhausted the rest of the day. I really don't like when I have to do that because it multiplies my CFS symptoms by 2.

I take melatonin sublingually and I usually sleep from 4 am until noon. I was not able to find a best option. This is the pattern where I feel the best, a kind of "natural" pattern now.

Then I saw a specialist/psychiatrist in sleep pattern that told me to do the forced waking up method that I tried years ago and said melatonin was the only option. She did not help. Moreover, I usually have had bad experiences with drugs so I don't take them.

I think I'm stuck in this state and I can't ameliorate the symptom, whatever I do it will ultimately come back to this delayed sleep phase pattern.

 

[JoanDublin]

I have the same experience as your son. Many years ago, when my CFS was better, I was able to shift my sleep pattern when I was falling asleep too late. And my internal clock could handle the reset.

Then I had a non-24-hour sleep–wake disorder, it means that I was falling asleep at midnight for example, then 1 am..., 6 am, 10 am, etc.
I plotted a graphic years ago to highlight the patterns, and it was around 1 to 2 months for a 24h shift around the clock. That was really bad for my health.

The supplementation did not help. Forcing myself to wake up and be a zombie during the day neither. I never fall asleep earlier or just sleep - like a nap - from 8pm to 10pm, then I'm like an owl until 4 am.

When I have a medical appointment, I forced to wake up then take a nap later, but I'm exhausted the rest of the day. I really don't like when I have to do that because it multiplies my CFS symptoms by 2.

I take melatonin sublingually and I usually sleep from 4 am until noon. I was not able to find a best option. This is the pattern where I feel the best, a kind of "natural" pattern now.

Then I saw a specialist/psychiatrist in sleep pattern that told me to do the forced waking up method that I tried years ago and said melatonin was the only option. She did not help. Moreover, I usually have had bad experiences with drugs so I don't take them.

I think I'm stuck in this state and I can't ameliorate the symptom, whatever I do it will ultimately come back to this delayed sleep phase pattern.

I suspect it will be the same for him, in that he will be stuck in this state. Interestingly towards the end of June this year he suddenly had a good remission from many of his symptoms. He had been on a host of supplements for a number of months so we are not sure if they helped but in any event he was able to do things he hadn't been able to do for years. Don't get me wrong, he wasn't miraculously recovered but he was substantially better in that he was able to go swimming every day (short 5 min periods building to almost an hour) over a period of about 7 weeks. Then everything came crashing back down again. During those seven weeks his sleep cycle instantly returned to normal. It was like a switch. When he crashed again in August the sleep reversal returned. He fought it as much as possible (is still trying to fight it) by insisting on sleeping on the sofa in the living room so that he would 'get wakened easier' and not 'get sucked into the bedroom again'. At least that's how he describes it. After almost four years mostly bedbound he had developed a horror of going back to that place again.

He's still sleeping in the living room although it's completely pointless as his sleep reversal is now total once again. But he's only a kid and I don't want to point out the obvious. He'll get around to sleeping back in his room at some point in the future I guess. For now I just let him do whatever makes him feel better.

 

[frederic83]

He had been on a host of supplements for a number of months so we are not sure if they helped but in any event he was able to do things he hadn't been able to do for years. Don't get me wrong, he wasn't miraculously recovered but he was substantially better in that he was able to go swimming every day (short 5 min periods building to almost an hour) over a period of about 7 weeks.

Can you elaborate on this and give the list of supplements, it might help, we never know

For what it is worth, I took some methylprednisolone years ago, and that helped with my sleep for about 3 weeks. I was sleeping like a baby and falling asleep at 10pm. It did not last, though.

 

[JoanDublin]

Can you elaborate on this and give the list of supplements, it might help, we never know

For what it is worth, I took some methylprednisolone years ago, and that helped with my sleep for about 3 weeks. I was sleeping like a baby and falling asleep at 10pm. It did not last, though.

Sure, he was on the following:

Selenium
Vitamin B12
Ubiquinol
Vitamin B Complex
Turmeric
Vitamin E
Evening Primrose Oil
Magnesium
N- Acetyl Cysteine
UDOs Super 8 Microbiotics

 

[TrixieStix]

I have the same experience as your son. Many years ago, when my CFS was better, I was able to shift my sleep pattern when I was falling asleep too late. And my internal clock could handle the reset.

Then I had a non-24-hour sleep–wake disorder, it means that I was falling asleep at midnight for example, then 1 am..., 6 am, 10 am, etc.
I plotted a graphic years ago to highlight the patterns, and it was around 1 to 2 months for a 24h shift around the clock. That was really bad for my health.

The supplementation did not help. Forcing myself to wake up and be a zombie during the day neither. I never fall asleep earlier or just sleep - like a nap - from 8pm to 10pm, then I'm like an owl until 4 am.

When I have a medical appointment, I forced to wake up then take a nap later, but I'm exhausted the rest of the day. I really don't like when I have to do that because it multiplies my CFS symptoms by 2.

I take melatonin sublingually and I usually sleep from 4 am until noon. I was not able to find a best option. This is the pattern where I feel the best, a kind of "natural" pattern now.

Then I saw a specialist/psychiatrist in sleep pattern that told me to do the forced waking up method that I tried years ago and said melatonin was the only option. She did not help. Moreover, I usually have had bad experiences with drugs so I don't take them.

I think I'm stuck in this state and I can't ameliorate the symptom, whatever I do it will ultimately come back to this delayed sleep phase pattern.

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.