Does anyone on here sleep normally?

[*GG*]

Yes I sleep really well and I am so grateful that I do, last night I slept solid for nine hours, my usual is eight and a half. But I can't just spring out of bed like I used to I still feel ill and mornings are not good for me I get better later in the day. Goodness knows how bad I would feel if I didn't sleep well you have my sympathy. Occasionally I do have trouble getting to sleep because of rest less legs though.

I always go to bed at the same time each night and get up the same time in the morning which I think does help, I also don't use computers after nine in the evening to give my brain time to calm down.

I have always been able to sleep well, but if I do get a night when I don't, I feel like death the next day.

I don't go to bed at the same time very night, I take my meds almost at the same time every night, but I do not go to my bed until I am feeling sleepy. Sleep hygiene does not work for me, and I think most patients, go ahead and try it. Worth a shot I guess, but don't let people who have good sleep because they follow this get you down!

I usually sleep more at night on the days I exercise, but sometimes it is the day after. The "fatigue" catches up to me, it seems. I use a CPAP machine with oxygen as wall, perhaps this helps me to be higher functioning than most?

I don't see the point in getting up every morning at the same time, we don't feel well. So often sleeping another 2 to 3 hours, and waking again. I feel better, so why be miserable the whole day? Just does not make sense!

I sleep, or am in bed from 8 to 12 hours a night/day.

GG

 

[IThinkImTurningJapanese]

I so rarely wake up feeling rejuvenated, once in a year or two, that I am shocked when it happens.

Most of the time, I wake feeling hungover, with or without imbibing. I have, however, mostly overcome suffering from insomnia.

 

[Wolfiness]

Is there anyone on here who has managed to improve their sleep hygeine and thus their overall symptoms by sleeping consistently at relatively normal hours?

I've slept pretty great for 15 years now since I *abandoned* sleep hygiene. Sleep hygiene used to wreck me. My body clock migrates over the place now and I quite enjoy it, but it's obviously a problem if you need to keep office hours.

 

[daisybell]

I usually get to sleep easily - unless I'm really sore. I wake easily, usually 5-10 times a night, but don't lie there awake. It's very rare, but a real treat if I happen to wake up in the morning with that lovely feeling of being comfortable and cozy in bed......
I'm usually cold going to bed, and need the electric blanket so I don't get endless cramps, but then wake up sweating in the night!
Melatonin doesn't do anything for me as a rule.

 

[Chelby]

My sleep is constantly fluctuating from falling asleep very early out of fatigue and staying asleep.. to insomnia. It is also hard to say how much is from drug side effects. The majority of the time my sleep is decent and not much of an issue for me.

I am considering taking medications that will encourage hypersomnia, fatigue and apathy.. I am wondering if it will help with rest therapy.

 

[valentinelynx]

My body clock migrates over the place now and I quite enjoy it, but it's obviously a problem if you need to keep office hours.

I have almost complete sleep reversal now. I'm going to bed at dawn and sleeping in intermittent blocks throughout the daytime. On the occasions when I need to work, I have to reverse this, and try to get some sleep before waking at 5 AM for work. If it weren't for the need for work and the fact that most of the world operates during daylight hours, my situation might be OK.

Anyone else with severe sleep reversal? I thought it was pretty common: it is even cited as a common symptom of ME/CFS somewhere (can't recall exactly where at the moment).

 

[trishrhymes]

Many years ago, in my early 20's when I was healthy, I had an experience of partial sleep reversal, but it was entirely due to the fact that I wasn't working for a few months, and was sharing a house with friends who were working. I quickly and naturally slipped into a pattern where I slept from about 4 am to midday, then had only a few hours to fill before my housemates came home and I had company for the evening, then I'd have a quiet reading time in the early hours of the morning. This was perfectly health and logical to me at the time.

Then in my working years I had to use alarm clocks to keep myself to a 'normal' sleep pattern. Once I got ME, my sleep quality took a nosedive, but I was still working part time for 12 years with mild to moderate ME, and tended to catch up a bit on sleep on weekends.

Now I'm at home with fairly severe ME and theoretically could sleep at any time and allow myself to sleep on in the morning as long as I can - but I still sleep badly, wake early, and get too few hours sleep most nights. I don't take any medication for this - tried amitryptiline but it made me too nauseous and dopey even on tiny doses.

I'm beginning to think I should try to do something about it again. So far not eating anything after 8pm and no screen time after 9pm may be helping a bit. Strict sleep hygiene beyond these measures just makes me cross and restless.

 

[arewenearlythereyet]

Many years ago, in my early 20's when I was healthy, I had an experience of partial sleep reversal, but it was entirely due to the fact that I wasn't working for a few months, and was sharing a house with friends who were working. I quickly and naturally slipped into a pattern where I slept from about 4 am to midday, then had only a few hours to fill before my housemates came home and I had company for the evening, then I'd have a quiet reading time in the early hours of the morning. This was perfectly health and logical to me at the time.

Then in my working years I had to use alarm clocks to keep myself to a 'normal' sleep pattern. Once I got ME, my sleep quality took a nosedive, but I was still working part time for 12 years with mild to moderate ME, and tended to catch up a bit on sleep on weekends.

Now I'm at home with fairly severe ME and theoretically could sleep at any time and allow myself to sleep on in the morning as long as I can - but I still sleep badly, wake early, and get too few hours sleep most nights. I don't take any medication for this - tried amitryptiline but it made me too nauseous and dopey even on tiny doses.

I'm beginning to think I should try to do something about it again. So far not eating anything after 8pm and no screen time after 9pm may be helping a bit. Strict sleep hygiene beyond these measures just makes me cross and restless.

I've just downloaded the sleep zone stuff for my Fitbit blaze. This now tracks how long you are in rem sleep vs light non rem and deep non rem. Looks quite interesting so far. I'm wondering whether this is an improvement in sleep quality tracking? I presume it uses movement and heart rate to track the zones? Too early to tell yet but I'm wondering whether this can give me some better insight into quality if sleep.

I read on your earlier post on another thread that you were struggling with sleep tracking with the Fitbit. Is yours with heart rate monitoring as well? If not, just wondered whether that might help track sleep better? I certainly noticed a difference in the accuracy when I changed from a fitbit one.

 

[Research 1st]

WIthout medications it would be impossible to sleep normally if you have inflammation affecting your brain. This is something that Jared Younger is very up on at the moment with his brain temperature research and liking this to pain for example.

Add on to this autonomic dysfunction that leads to endless symptoms, then no one with ME will report they can sleep normally as it would be physiologically impossible to have a disease affecting your brain function and immune system and sleep normally.

 

[svetoslav80]

Things have become much better for me after I started taking melatonin. But I can't sleep without it and am afraid if it stops working some day.

 

[Jenny TipsforME]

I actually had a terrible night last night! Up with gastro problems, nausea and cramps. Haven't had a night that bad in a while. Got me down today because I was one reasonable night's sleep away from being able to go out for lunch. Oh well.

have frequent wakings and nocturnal urination

Obviously I don't have my sleep completely sussed, but pumpkin seed oil has helped me with not needing to pee so much. It's the main ingredient in a irritable bladder supplement that's advertised on TV. Previously this has been a major issue for me since my ME started 19 years ago.

 

[ahmo]

B12 stopped my horrific chronic insomnia, which I'd had as a tendency all my life. Before that, pituitary glandular helped. I was also using adrenal and hypothalamus glandular at that time. good luck.

 

[trails]

Three years ago my doctor had me undergo a sleep test under the assumption that sleep issues might be at the heart of the constant fatigue. The test results showed that I was waking (even if only momentarily) 36 times per hour. Official diagnosis was "sleep disturbance". Prescribed 10mg Ambien which I have been on ever since.

Now I sleep quite well (with the Ambien). Of course, the fatigue and all other CFS symptoms still remain.

 

[Sushi]

Three years ago my doctor had me undergo a sleep test under the assumption that sleep issues might be at the heart of the constant fatigue. The test results showed that I was waking (even if only momentarily) 36 times per hour.

I am going to do a home sleep study this week-end. I'll be very curious to see the results.

 

[PennyIA]

My sleep (funny enough) has always been fantastic. Seriously deep sleeping. I occasionally have trouble sleeping due to stress, but have managed to work out a routine to help with that. It doesn't always work, but probably 75% of the time and that 75% applies to maybe 3 nights sleep out of a year.

I did end up getting a sleep study done because I wake up unrefreshed (what a understatement that feels like) which is milder when I'm in remission and way, way worse if I've had a crash. I've been told I have textbook perfect sleep (but I swear, I only have dreams about once a year and that can't be normal)... but I need a minimum of 9 hours to function. And would love to have 10-12 hours (though I know I won't feel any more rested if I do).

And the funny thing is? I sleep best with a BAD sleep hygeine method. I used to struggle with insomnia for years as a teen and young adult (before I got ill)... and eventually learned that if I could have some noise on in the background ... specifically something not stimulating... that it would calm my thought processes down enough to keep me from getting into problem solving or self-bashing which would keep me up half the night or longer.

I have a couple of tv shows that are on Hulu/Netflix (used to use DVDs and before that VHS tapes)... And I watch them on SERIOUS repeat - like 10 episodes where I have seen every episode at least 100 times. I set up the show, set the tv sleep timer, lay on my side on a heating pad (to deal with chronic shoulder pain); and play solitaire (a game I'm not invested in) on my phone until my eyes grow tired. Usually takes about 5 to 10 minutes. Turn my phone off, and bam, I'm out. And I stay out of it until my alarm goes off for the 20th time. I can sleep through just about everything, my cat/dog getting up or down, my husband waking up and getting out of/into bed three to four times a night, big storms, etc. I have to remember to be thankful for it.

But somehow, having something 'not exciting' on the tv and it being so predictable I can practically recite the script? That let's my brain go into 'listen' but not 'focus' mode, which keeps me from getting caught up on problems or stressful things at work, or otherwise. And the phone? That helps my eyes go from being alert and paying attention to being just tired enough and sore enough to say, I'm ready to rest now. If I don't have either, I don't sleep as easily or as deeply. Go figure. I just want to laugh when I get a recommendation for better sleep. I sleep like the dead... that's not the issue for me at all. And while I get that the things I'm doing would make it harder for other people to sleep? I LOVE the magic of finding the combination of things that work really, really well for me. I spent at least 10 years getting less than 5 hours of sleep at night and struggling with it. Being able to sleep within 10 minutes of laying down? Darn awesome.

 

[valentinelynx]

but I swear, I only have dreams about once a year and that can't be normal

Actually, if you have "textbook sleep" you are almost certainly having REM sleep and dreaming. However, people who sleep deeply like you describe often have difficulty remembering their dreams. In fact, people in our culture in general have trouble remembering dreams. They are very easy to forget (definitely an interesting mechanism there). The best way to remember them is to awaken directly from REM sleep. Then don't move or do anything or think anything else before asking yourself what you were just doing. You may only have a little inkling of what you were dreaming, but start with that. With time and practice you will remember more.

Also, for dream recall, it helps to sleep a little later, or get up and then take a nap. REM sleep time increases later in the night and morning.

Here's a segment from our website (specialists in lucid dreaming) about dream recall techniques, in case you're interested. It does take work!

 

[Jenny TipsforME]

The test results showed that I was waking (even if only momentarily) 36 times per hour.

Actually I should have mentioned that I did the 24hr Holter test for heart rate and I asked my cardiologist about sleeping problems. He said "well you have fairly constant tachycardia". That doesn't sound conducive to sleeping well does it! So also meds (bisoprolol and ivabradine) to reduce heart rate help my sleep, though that isn't the main reason I take them.

if I could have some noise on in the background

I'm the same. I used to do this before ME too though. Listening to talk radio or audio books. If I can't sleep watch fairly boring TV. The interest level has to be just right. If it's too boring I don't actually follow it. I used to record boring TV, now with on demand there's no limit to the amount of boring TV available!

That let's my brain go into 'listen' but not 'focus' mode, which keeps me from getting caught up on problems or stressful things at work, or otherwise.

Yes I don't think this is ME specific, it's useful if you tend to dwell on the events of the day. Although if you have the type of ME when you under sleep like me, it can be useful to do this in order to physically rest. I'll generally start listening to the radio in the dark 10pmish and our alarm comes on at 7.30am. It would be very unusual for me to sleep over 9hrs but I do need to be still in the dark that long.

 

[Confined]

My sleep is awful. I go to sleep but straight into vivid dreams and frequent awakenings throughout the night. Medical professionals not willing to offer any assistance apart from sleep hygiene which is basically common sense.

 

[Basilico]

I very rarely have to go at night anymore. Now my body can usually wait until first thing in the morning. Inclining the bed allows water to remain in the blood stream longer so that less makes its way into the bladder during the night. This can also help to reduce OI symptoms by increasing blood volume.

It's important to get a 5 degree incline for your entire body (6" higher at the head of a standard length bed.) Pillows probably wouldn't work very well due to compression and an inconsistent surface, but might be useful for an experiment. I use bricks to raise the head of my bed. Foam bed wedges are also also available but more expensive.

Andrew K. Fletcher is an inventor who promotes inclined bed therapy for helping to treat or even resolve many health conditions.

I think this is very interesting, and I plan to give it a try. To anyone who has done this (@Manganus, @PatJ , others ) I have a question, though. If you raise only two legs of the bed, won't the bed be really unstable because those two raised legs will be resting on the edge (since they're at an angle)? Do you try to put something angled under the raised legs to make them more stable?

 

[Manganus]

It turned out that a CPAP-machine helps me a lot.
Tilting the bed too, but I don't need that as much any longer, using pillows when it feels needed.

(Using computers in the evenings does not help. )

Edit:
I forgot: I almost always sleep with music from my own collection. It really keeps me calm when I wake up during the night. The exceptional nights when I somehow have forgotten this, I may wake up quite surprised in the morning. But mostly, I wake up after some hour and turn the music on.​

I can not say that I have a normal sleep pattern. But it's improved considerably in the last years. Without sleeping medication, however, I often get nights with little sleep and many thoughts. The day after is "a worse day."

Until two years ago, I used mostly benzodiazepines and SSRI as sleeping pills. Since then I use cannabidiol & cannabinol in oil. I'm my own pharmacist, and can not give any exact data. I don't know if my doses are high or moderate.

My mornings became much, much improved after giving up SSRI and traditional sleeping pills. Now my best hours of the day are in the mornings.

Many nights I sleep 10 hours, or so. Before that, for many years, it was 14 hours + day rest.
But once or twice a week, I sleep less. Often I see a clear connection from an event-full (or effort-full) day. Such nights, it feels as if I've been more awake than sleeping, which probably is true. These nights have always occurred - both with and without sleeping medication.

Is there anyone on here who has managed to improve their sleep hygeine and thus their overall symptoms by sleeping consistently at relatively normal hours?

I managed to sleep well for around 10-14 nights in a row about a month ago and found that it really helped my overall energy levels.

I think I can testify!