Sleep reversal advice

[JoanDublin]

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?

 

[alex3619]

Many of us are veterans of this issue, but there are no fantastic answers. Various treatments have helped, or helped in the short term, but for many of us this is a long term struggle.

All I can give is my own experience. I am a long term patient ... younger people have a higher chance of recovery, especially in the first few years, so there is a good chance this will all go away.

My own experience trying the force sleep forward is that it eventually fails, but it can work for many years. On the other hand when I manipulated my sleep for three years so I could go to university it wound up with me collapsing in stairwells, and totally exhausted, and I never really recovered. However this varies so much with severity of illness, that its impossible to give more than an inkling and personal viewpoint.

The sad fact is that research in this is often so underdeveloped that everyone is guessing.

If however this is more a normal insomnia issue, and not ME related, then various combinations of light therapy and sleeping aids (natural and prescribed) might help. There is lots of information on this, but lots of cautions too.

I wish you the best of luck.

 

[JoanDublin]

@alex3619 Thanks for that Alex. I guess there's no quick fix and no right or wrong. I think I will just let him at it and see how he gets on. I cant see him keeping it up because he's totally exhausted during daytime hours anyway so the only benefit he has is that he is not lying awake all night by himself. Maybe that's better though? Who knows

Its definitely ME related. Before he got ME he had no problems sleeping and rising early in the morning so this is new to him. He did try Melatonin but he took a bad reaction to that so we had to pull the plug on it. He has become quite sensitive to medications since he got ill

 

[halcyon]

My understanding is that melatonin can be helpful but not in the normal dosage you find it in, think mcg not mg. I've found 3g of glycine before bed can be helpful.

Also, I find getting as much natural light as possible outside during the day seems to help make me sleepy earlier, maybe due to the vitamin D or maybe it just helps normalize circadian sleep pressure.

 

[Dolphin]

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?

I've heard at least a couple of people say they feel better going to bed late e.g. 1am/2am rather than forcing themselves to go to bed early, even when they get the same number of hours of sleep.

Unfortunately such a sleeping pattern doesn't suit education (unless one gets home or distance tuition).

Best of luck.

 

[alex3619]

@alex3619 Thanks for that Alex. I guess there's no quick fix and no right or wrong. I think I will just let him at it and see how he gets on. I cant see him keeping it up because he's totally exhausted during daytime hours anyway so the only benefit he has is that he is not lying awake all night by himself. Maybe that's better though? Who knows

Its definitely ME related. Before he got ME he had no problems sleeping and rising early in the morning so this is new to him. He did try Melatonin but he took a bad reaction to that so we had to pull the plug on it. He has become quite sensitive to medications since he got ill

Many of us respond to melatonin, many don't and some have a bad reaction. Most things used to treat ME are covered by the Lemon Rule: they are usually lemons but the only way to find out is to suck them and see. We are all so different, and yet so much the same.

I let my circadian rhythm free float, in that I have no set sleeping time. Were I still studying this would be impossible to do.

I see circadian issues more and more in longer term patients, just as I see more memory issues.

 

[Martial]

I have the same issues lately, it just comes and goes a lot. I know it would reverse if I was out in the world and stuff but since I am cooped up all day my body has no set of normalcy when it comes to day/night. As long as he is sleeping enough over all thats good enough for now at least. I also tried to force it with sleep deprivation and other things but it made me feel awful. Light/Dark therapy is definitely worth a shot though, and maybe trying to reverse it by going to sleep 20 minutes earlier each day or week until it gradually comes back. There are a lot of little things you can try but definitely don't try to be too forceful with things. Will probably go away once recovery is more established anyways.

 

[alex3619]

Last I checked there were about 15 different factors directly affecting sleep timing, with melatonin being one of these, and a bunch more that indirectly do so. Many of these are suspect in ME. The simplest explanation though is that the hypothalamus is biochemically suppressed. We are still trying to sort out the science. With milder sleep reversal issues the symptoms appear to be severe insomnia. I am discovering, after decades with ME, there is a stage beyond non 24 hour circadian disorder. From time to time my circadian rhythm is shattered. There is no such thing, delayed or otherwise. Please note that I have probably been sick 46 years, since age 7, so this is not something that happens immediately.

 

[Martial]

Last I checked there were about 15 different factors directly affecting sleep timing, with melatonin being one of these, and a bunch more that indirectly do so. Many of these are suspect in ME. The simplest explanation though is that the hypothalamus is biochemically suppressed. We are still trying to sort out the science. With milder sleep reversal issues the symptoms appear to be severe insomnia. I am discovering, after decades with ME, there is a stage beyond non 24 hour circadian disorder. From time to time my circadian rhythm is shattered. There is no such thing, delayed or otherwise. Please note that I have probably been sick 46 years, since age 7, so this is not something that happens immediately.

Mine seemed to shift dramatically from normal and stable to a complete mess within a period of certain months, I would imagine something is interrupting proper hormone and neurotransmitter patterns. Low brain flow to the brain and poor response of the hypothalamus causing some kind of abnormal regulation? I think like you mentioned though there are countless other things that could effect it too, and probably at times it becomes very compounded.

 

[perchance dreamer]

I always had a bad effect with melatonin until I tried Jarrow Sustain, which is 1 MG with a little B6. I split it and take 1/2 MG per night:

http://www.iherb.com/Jarrow-Formula...formulas melatonin sustain&rc=28&sr=null&ic=1

The glycine, as Halcyon mentioned, also helps a lot.

Joan, you might also think of brainwave entrainment to help your son with sleep and feeling more alert during the day.

Transparent Corporation has a product called Neuro-Programmer 3, which includes audio sessions for insomnia and attention and concentration. They let you download for free a subset of the full program for 2 weeks so you can try it out.

If you are interested, you might email Customer Service and ask which of the sessions are included in the free download.

http://www.transparentcorp.com/products/np/index.php

Good luck!

 

[JoanDublin]

Once again, thank you all for the very helpful info and suggestions. I will work through them and see what might help. I can't thank the members on this site enough. You've all been so helpful at different times and I really do appreciate it. We have the bowels moving again thanks to advice gotten here and if we can get the sleep issue under some sort of control, he might just have a chance at having a half normal life. It's been great to just be able to have a conversation again with him in daylight hours Onwards and upwards

 

[Gingergrrl]

@JoanDublin I don't know how your son would react to this, or if it is even available in Ireland, but a few days ago I started taking a new supplement, Taurine, 2x/day, and it is very relaxing and sedating. I feel a sense of calm with it and it even helped my breathing a bit. I am preparing to go into the hospital for tests and having a lot of anxiety, but the Taurine is keeping it under control and the first night I took it, I slept for 8-9 hours uninterrupted. I believe it is just an amino acid and it is not a prescription. I don't know though if everyone would react to it the same way that I did?

 

[JoanDublin]

@JoanDublin I don't know how your son would react to this, or if it is even available in Ireland, but a few days ago I started taking a new supplement, Taurine, 2x/day, and it is very relaxing and sedating. I feel a sense of calm with it and it even helped my breathing a bit. I am preparing to go into the hospital for tests and having a lot of anxiety, but the Taurine is keeping it under control and the first night I took it, I slept for 8-9 hours uninterrupted. I believe it is just an amino acid and it is not a prescription. I don't know though if everyone would react to it the same way that I did?

Thanks for that! It is available in Ireland. I just had a look online. It's definitely worth a try. Thanks again.
When are you going in to hospital?. I saw your post the other day. Gosh no wonder you have anxieties It must feel comforting though to be in such good hands. That doc sounds like a keeper.

 

[snowathlete]

It's tricky and this is common in ME.

I have better brain function in the evening and I think this is why I started going to bed later and later, though I wasn't aware of deciding to do that.
I also think I let myself become more exhausted so that falling to sleep is easier.
The worst I got was 4:30am. I'm currently at between 1 and 2. That's not bad. I'm hoping to settle between 12 and 1 though.
I took melatonin for a while. Now I take amitriptyline after having a sleep study but it's effect is becoming less after several years.
I have found that reading before bed, something entertaining, helps me relax. And when I wake up I listen to music for an hour and that helps me adjust to being awake before I get up.
It's not easy though, it's complex, I'm sure it's the disease. Try things that worked for others until you find something that works for your son. Though you may have to settle for 'better' rather than 'fixed'.

 

[Gingergrrl]

Thanks for that! It is available in Ireland. I just had a look online. It's definitely worth a try. Thanks again. When are you going in to hospital?. I saw your post the other day. Gosh no wonder you have anxieties It must feel comforting though to be in such good hands. That doc sounds like a keeper.

@JoanDublin I wasn't sure if Taurine was available in Ireland so you might want to give it a try and that is great news! You could always start off with a really low dose. Don't want to get this off-topic and want to keep the thread about your son and his sleep patterns. The only reason I mentioned about hospital is that in spite of the incredible amount of stress I've had this week, the Taurine is still helping me to sleep. So hoping it may do the same for your son.

 

[JoanDublin]

It's tricky and this is common in ME.

I have better brain function in the evening and I think this is why I started going to bed later and later, though I wasn't aware of deciding to do that.
I also think I let myself become more exhausted so that falling to sleep is easier.
The worst I got was 4:30am. I'm currently at between 1 and 2. That's not bad. I'm hoping to settle between 12 and 1 though.
I took melatonin for a while. Now I take amitriptyline after having a sleep study but it's effect is becoming less after several years.
I have found that reading before bed, something entertaining, helps me relax. And when I wake up I listen to music for an hour and that helps me adjust to being awake before I get up.
It's not easy though, it's complex, I'm sure it's the disease. Try things that worked for others until you find something that works for your son. Though you may have to settle for 'better' rather than 'fixed'.

He is exactly like that in that he has better brain function in the evening too. He has now got to a point in his sleep retraining that last night he went to bed around midnight and is still asleep now at 8am which is amazing considering that three to four weeks weeks ago it was completely the opposite.

I know you're right in that it may get better but don't suspect it will be fixed. I've learned through lots of disappointments not to go down that road again, I.e. Thinking something was fixed or gone forever. It's all a movable feast and you just learn to be grateful for any improvements or things that make life easier even if they're temporary. The big problem with him starting to sleep again at night time is that he is quite zombified during the day as well whereas when he was sleeping during the day he was at least much better able to engage at the evening/night time. The problem is it will only take one sleepness night for everything to go back to where he started and I know that would be so disappointing for him. He's really working at trying to get back to school so fingers and toes crossed

Thanks for your help

 

[Martial]

He is exactly like that in that he has better brain function in the evening too. He has now got to a point in his sleep retraining that last night he went to bed around midnight and is still asleep now at 8am which is amazing considering that three to four weeks weeks ago it was completely the opposite.

I know you're right in that it may get better but don't suspect it will be fixed. I've learned through lots of disappointments not to go down that road again, I.e. Thinking something was fixed or gone forever. It's all a movable feast and you just learn to be grateful for any improvements or things that make life easier even if they're temporary. The big problem with him starting to sleep again at night time is that he is quite zombified during the day as well whereas when he was sleeping during the day he was at least much better able to engage at the evening/night time. The problem is it will only take one sleepness night for everything to go back to where he started and I know that would be so disappointing for him. He's really working at trying to get back to school so fingers and toes crossed

Thanks for your help

Maybe have your son get tested for a condition called pyroluria as well, could be a compounded issue that would cause some of these symptoms. What viral and bacterial panels has he been tested for? I know for myself Lyme and co infections completely disrupts and changes sleeping patterns and all kinds of weird stuff, parasites can do the same.

 

[IreneF]

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*.

 

[Valentijn]

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 haven't chronically had sleep reversal, but had some crazy jet lag a couple years after getting sick. I literally couldn't stay up later or get up earlier than my body wanted me too. I couldn't see straight when I tried, and my vision kept blanking out really rapidly, so everything seemed to be flashing.

I started taking melatonin when I wanted to be asleep, and after a couple days I was able to get back to normal. But melatonin makes me feel wretched, so I just take it for a day or two to move my sleep time back to normal, rather than trying to take it on regular basis.

 

[JoanDublin]

Maybe have your son get tested for a condition called pyroluria as well, could be a compounded issue that would cause some of these symptoms. What viral and bacterial panels has he been tested for? I know for myself Lyme and co infections completely disrupts and changes sleeping patterns and all kinds of weird stuff, parasites can do the same.

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