We all need five hours of uninterrupted deep sleep each night……..

[charles shepherd]

We all need 5 hours of uninterrupted deep sleep each night……….


The research findings below, from a group at John Hopkins University USA, which are described in this press report, are nothing new:

http://www.dailymail.co.uk/health/a...d-Study-says-s-interrupted-sleep-does-it.html

....but they do emphasise the fact that the human brain needs a period of solid uninterupted deep sleep (not just rest) every twenty four hours if it is going to function effectively the next day

Deep sleep refers to what is termed slow wave dreamless sleep where the muscles and brain relax

And if healthy normal people only have short periods of interrupted deep sleep - as is the case with people looking after new born babies in this study - they feel progressively more fatigued and have poor mental functioning the next day

Which means that in the case of ME/CFS, this type of sleep disturbance is going to exacerbate mental and physical fatigue as well as hampering any natural improvement that may be occurring

So management of sleep disturbance - using both self help measures and sometimes drug treatments - plays a key role in the management of ME/CFS


The MEA Ramsay Research Fund has been funding research into sleep abnormalities and management in ME/CFS at the University of Northumbria

This paper from the group describes how sleep disturbaces in ME/CFS might be sub-grouped/phenotyped as an aid to sleep management and why it is so important to consider the possibility of a primary sleep disorder - eg sleep apnoea - in people with ME/CFS who have a more severe sleep disturbance

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3669720/

The Medical Research Council is currently funding a study at Imperial College, London, which is looking at slow wave sleep disturbance in ME/CFS and the use of a drug called sodium oxybate, which enhances slow wave sleep:

http://public.ukcrn.org.uk/search/StudyDetail.aspx?StudyID=16324


Dr Charles Shepherd
Hon Medical Adviser, MEA

 

[helen1]

I read the research on the importance of sleep and feel sad. What can I do? Pharmaceuticals make other symptoms worse plus I develop tolerance quickly to all of the ones I've tried which is hell afterwards trying to taper off.

I keep trying non-pharma interventions some of which have worked for a few days or a few weeks, then stop working. For a while I was having success rotating those, then they all stopped working or worse, caused insomnia! Valerian is a deadly stimulant now...

Then there's the foods which make me pee way too much at night, namely most vegetables with crucifers being the worst. Eating no veggies at dinner does help actually. So does eating more carbs. So far those are the best I've found with no side effects (except gaining a few pounds).

Am thinking I'll do neurofeedback next. Anyone tried that for sleep?

Anybody sleep well for many months or years while ill? What do you use?

I should go reread the old threads about sleep...

 

[duncan]

I fear that for many of us, even with five or more hours of sleep, our brains will no longer function effectively.

 

[ahmo]

@helen1 B12, once I'd gotten enough of it, disappeared my long-term sleep problems. Which is not to say that my brain is fixed, but I'm not suffering the awfulness of sleep deprivation. I hope you find an answer.

 

[Mij]

Tons of magnesium injections with taurine. Even if I don't sleep 5 straight hours, I feel rested when I get up.

 

[FTY]

Thank you for this. The link to the second paper seems to be the same as the first, do you have any details of the sodium oxybate research?

 

[FTY]

Just did a quick search, looks like results of sodium oxybate trial will be out soon?

 

[heapsreal]

I wont more than 5hrs though

 

[WillowJ]

I wont more than 5hrs though

I think the 5 hours was just the deepest stage.

Most everyone needs at least 7.5 hours overall. Some healthy people need as many as 9.

Sleep medicines rated for long-term use are needed.

 

[heapsreal]

I think we need to have a large group of sleep meds to select from so we can alternate some every couple of days as well as alternate some every couple of months . Help us avoid tolerance and dosage escalation .

Many of us need something to help us initiate sleep as well as sustain sleep.

Is there any more people who have tried belsomra ? ?

 

[charles shepherd]

Thank you for this. The link to the second paper seems to be the same as the first, do you have any details of the sodium oxybate research?

Mea culpa: The link should be:

http://public.ukcrn.org.uk/search/StudyDetail.aspx?StudyID=16324

 

[FTY]

Mea culpa: The link should be:

http://public.ukcrn.org.uk/search/StudyDetail.aspx?StudyID=16324

Thank you @charles shepherd . It says the trial is in follow up, how long does that usually take? I'm interested to know the results.

 

[snowathlete]

last time I had deep sleep was when I had a GA for an operation. Deep sleep is just a dream for me, if only I could conjure up a dream.
On a very good night I get around 5 hours light sleep. I don't function that well and I'm sure that is part of the reason why. But I have been on sleeping tablets and they all have side effects, some of them severe.

 

[Maria1]

I stopped sleeping deeply when I had children, 14 years ago. I felt as if I was in a constant state of readiness for them waking up (which they quite often did) and could never quite relax enough for deep sleep.

I went on low dose amitriptyline (10 mg) combined with topirimate around 6 years ago as prophylaxis for migraine and a side effect was that I slept properly for the first time in years.

I wasn't ill with ME /CFS until 3 years ago and, although I definitely don't feel refreshed by sleep now, I still sleep deeply. My sleep disturbance is only really due to other symptoms such as temperature dysregulation, or needing to wee loads at times, (especially in a PEM state) rather than a symptom in itself.

I recently stopped the amitriptyline and topirimate, thinking it might help with day time fatigue. I was worried my sleep problems would return but they haven't. I still have deeper sleep than ever and I've noticed it getting deeper recently. I try not to track it but I'm pretty sure I get 5 hours.

So, I have ME/CFS but sleep better since being ill, after the first year anyway. I'm still much more fatigued than I was when I was well.

I should add (without advocating it as a cure ) that I also learned some mindfulness meditation in the first year of being ill. If I ever struggle with sleep I can use tips from that and I drift off quickly. I think that might have helped too.

 

[eafw]

We all need 5 hours of uninterrupted deep sleep each night

No, that's not correct. They are saying that people need 5 hours uninterrupted sleep (some light, some rem, some deep) in order that they may pass through enough deep cycles to feel OK. The total deep sleep is not 5 hours, certainly not 5 in a block.

So management of sleep disturbance - using both self help measures and sometimes drug treatments - plays a key role in the management of ME/CFS

Yes sleep management can help but there is some very bad advice being dished out, in the UK that I know of, by OTs, "CFS clincs" and GPs regarding this for people with ME.

They rarely look beyond the basics of "sleep hygiene" and insisting that daytime sleep is BAD, rather than looking properly at a persons sleep stages (good enough overview with free apps), actual level of functioning and other factors such as light, hormonal cycles, age, the usefulness of afternoon naps (to catch up on deep sleep !), mismatch of other circadian rhythms, the need for more or less sleep in different stages of the illness or during relapses or infection etc.

ETA: did the researchers not have the sense to wake people in the light stages vs deep stages to see a difference, this also is not new ? Disrupted deep is not the same as restless but still deep in between the wakenings.

 

[charles shepherd]

No, that's not correct. They are saying that people need 5 hours uninterrupted sleep (some light, some rem, some deep) in order that they may pass through enough deep cycles to feel OK. The total deep sleep is not 5 hours, certainly not 5 in a block.



Yes sleep management can help but there is some very bad advice being dished out, in the UK that I know of, by OTs, "CFS clincs" and GPs regarding this for people with ME.

They rarely look beyond the basics of "sleep hygiene" and insisting that daytime sleep is BAD, rather than looking properly at a persons sleep stages (good enough overview with free apps), actual level of functioning and other factors such as light, hormonal cycles, age, the usefulness of afternoon naps (to catch up on deep sleep !), mismatch of other circadian rhythms, the need for more or less sleep in different stages of the illness or during relapses or infection etc.

ETA: did the researchers not have the sense to wake people in the light stages vs deep stages to see a difference, this also is not new ? Disrupted deep is not the same as restless but still deep in between the wakenings.

Yes, I may have oversimplified the first statement and should have said……. at least five hours of uninterrupted sleep each night, including deep sleep

As you say, normal sleep is a mixture of various types of sleep. The important deep sleep component mainly occurs during the first part of the night, and this is why 5 hours solid uninterrupted sleep to start with is probably the most important thing that people should be trying to achieve…….

Your points about 'sleep hygiene' are also very important - although while short daytime naps can be beneficial I think there are dangers in people taking longer periods of actual sleep during the day

 

[eafw]

The important deep sleep component mainly occurs during the first part of the night

short daytime naps can be beneficial I think there are dangers in people taking longer periods of actual sleep during the day

This has been received wisdom for a while, but I think it is quite wrong - especially for people with ME.

Deep sleep can occur towards the end of the night, and in afternoon sleeps (which is why they can be restorative, even necessary during stages where the body needs every chance it can to recover).

There was a speaker at CMRC talking about sleep and he was regurgitating the bog-standard stuff with absolutely no insight in terms of our condition, then that guy from Northumbria a while back- who is supposed to be a top researcher, and yet getting it very wrong as well.

It is a very interesting area, but the quality of the research in terms of ME specifically seems to be really missing the mark.

 

[helen1]

B12, once I'd gotten enough of it, disappeared my long-term sleep problems. Which is not to say that my brain is fixed, but I'm not suffering the awfulness of sleep deprivation. I hope you find an answer.

How much B12 are you taking now @ahmo? Is it a methylB12 you're using transdermally?

 

[digital dog]

Nothing helps me sleep. It just gets worse and worse and it makes me want to kill myself. Could handle anything but this soul destroying sleep deprivation.

 

[heapsreal]

Nothing helps me sleep. It just gets worse and worse and it makes me want to kill myself. Could handle anything but this soul destroying sleep deprivation.

I know when i was going through long stretches of crap sleep it was horrible . I often thought it would be good to be anaesthetiized for a few days. I could understand the extremes that Michael Jackson went, to try and sleep.

We need some real treatments for sleep.