New Sleep Poll

This poll is an updated version of the one from 2018

Biphasic sleep is a subset of problematic sleep maintenance. Some people many wake for half an hour and fall right back to sleep. Others may stay awake for several hours before going back to sleep--this is more like bi-phasic sleep.

 

Sleep initiation typically takes between two and five hours.

I don't know what Z drugs are either, but I never take sleep meds anyway.

The drugs I do need for sleep are painkillers. 80% of my pain occurs when lying down, and it's one of the reasons I have difficulty with sleep initiation (the other being PEM).

ETA: There's an argument that it's normal for people to have two main phases of sleep, as in the notion of 'first and second sleep'. We don't hear about it now, but there are frequent references to it in old texts.

 

What about the circadian issues? Many of us have major circadian problems. I have had everything from inverted sleep hours, to advancing sleep time an hour a day, to no circadian pattern at all, napping from time to time instead. Right now I sleep in the afternoon, and might if I am lucky get a nap or two at some other time. A few weeks ago it was different. A few weeks earlier than that and it was cycling an hour a day.

 

info on Z drugs can be found here.


https://www.fda.gov/consumers/consumer-updates/taking-z-drugs-insomnia-know-risks


https://en.m.wikipedia.org/wiki/Nonbenzodiazepine

 

I presume that by 'somnolescence' you mean somnolence?

 

Z drugs include zopiclone, eszopiclone, zaleplon and zolpidem. All sleeping meds.

Rosanne Barr famously blamed a racist outburst on one of the Z-drugs.

I think they're more prevalent in the US than here, as I've mainly seen low-dose tricyclics used for sleep over here.

 

Yes

 

I have problems initiating and maintaining sleep. I wake usually by 5 or six hours and either fall back asleep or just lay in bed for a few more hours before getting up.

I was going to click on the drug for sleep but I use drugs every week with only one or two days without but I use different things to try and get to sleep. I am always concerned about a drug becoming ineffective and I can only use over-the-counter drugs as I can't get to a doctor.

So if I'm in a lot of pain sometimes just a pain reliever will help. They also make night-time versions that I use too. Other times I'll use melatonin (but not often). And sometimes I use a muscle relaxant. Sometimes if I don't go to sleep with one I'll add one of the others. But I try to do without all when I can.

It's not an elegant solution and when they wear off that's when I wake up but as I said I often do manage to go back to sleep either with another dose of something but most often not. Increasingly I have trouble taking a dose in the early morning with an empty stomach.

 

I've had many variations of sleep disorders in the last 28 years. I've never needed heavy drugs, only trazodone to initiate sleep.

In general, my sleep is pretty good but menopause changed all that.

 

I struggle to fall asleep, but when I finally do I usually sleep 8-10 hours or more. Never refreshing sleep.

The more I’ve exerted myself in a day the more difficult it is to sleep. In this case I usually just fall asleep 2-5 hours later than the day before, but if I’ve exerted myself extremely, I might have to stay up for around 24 hours before I can sleep. (Haven’t really tried sleep medications yet, but melantonin does nothing for me).

For keeping a regular sleeping schedule there’s no sleep hygiene advice that works, only thing that helps me is avoiding overexerting and PEM. In PEM I sometimes feel I sleep much better during the day than night.

If I try to force myself to sleep at a time my body isn’t ready, I wake up after an hour or so, and feel really horrible - heavy heartbeat, a feeling of low bloodsugar or something like that, shivering and anxiety.

 

I have never felt "sleepy" tired (somnolescence? aka, somnolence?), not even at the beginning of my illness.

For the first 4-5(?) years of my illness, I did not seem to have many sleep problems. I did tend to sleep a lot more hours than usual (maybe 10-12 hours instead of my usual 7-8) but it seemed to be about the same quality of sleep as long as I did not have night sweats (woke up with my t-shirt, pillowcase, and sheets drenched). Night sweats were common in the first few years. Now they are rare.

My other problem was having to get up to urinate a couple times in the night, every night, even though the amount was very small. I didn't understand why that would wake me up. That problem stopped after I started fludrocortisone. I'm no sure whether the fludrocortisone actually helped (I think it did?) or my illness just changed.

But nowadays, even though I drink 2.5 - 3 liters of water daily, I NEVER have to get up in the night to urinate. Seems backwards, but it's true.

After maybe 5-6 years of illness my sleep slowly started getting worse. I don't remember exactly when. It was gradual.

I still do not have any trouble falling asleep at night. But I regularly wake up during the night.

On a good night, I will wake up only 4-5 times. On a bad night, I'll wake up 14-15 times.

No, I can't actually remember (brain fog!) exactly how many times I wake up during the night. I know this number only because I had to keep a sleep log for a few nights before I went to see a sleep specialist. Kept a piece of paper beside my bed where I had to write down each time I woke up.

I went to a sleep specialist so I could rule out apnea and lowered blood oxygen. My at home sleep test showed no apnea and blood oxygen 98-99%. I never did a full sleep test in the lab. It seemed like this sleep specialist only knew how to treat apnea. She had never heard of POTS/OI/NMH, and knew nothing about ME/CFS, so I thought it would be a waste of money & energy to do a full sleep test.

Anyway, on a bad night I'm sleeping in short bursts that range from 15 minutes to 45 minutes. When I am able sleep for more than an hour without waking up, I consider that a good night!

I do not think this is as bad as having insomnia, e.g., not being able to sleep at all/only a few hours. If you add up all my sleep bursts I do manage to get some rest in spite of all that waking up. And in the morning I generally feel no worse, and sometimes feel better, than I did the night before. So that's good.

I would love to know why my sleep is bad. I'd love to have some actual treatment (vs. avoidance = "Does it hurt when you do this? Then don't do this!"). But at least when my sleep starts to get really bad I can increase my rest a lot, decrease any exertion, and slowly it will start to get better again.

My understanding is that the sleep drugs out there are not likely to help my kind of sleep problem. And I'm not anxious to start on any sleep drugs if I can avoid them.

 

Summary version of my previous post:

I never feel sleepy during the day.

I have no trouble falling asleep at night.

I wake up A LOT during the night.

Resting always makes my sleep better (eventually, it may take days).

Exertion always makes my sleep worse.

 

I sleep reasonably well, however, it is never refreshing. That hasn't happened in over 29 years now.

 

My sleep switched off like a light switch overnight after sleeping like a baby for 11 years with ME. Poof, it was gone. I completely lost the ability to fall asleep and had to take trazodone for 1 1/2 years every night. My natural sleep eventually came back and I no longer needed meds.

My worst experience was at a sleep lab. I stayed overnight and was told not to take any meds, so I explained to the technician that I was unable to initiate sleep- she told me to 'try'. She asked if I did shift work and I said no, and that I have a medical condition. At around 3 am she came back into the room and told me to take the meds because I was STILL awake. I was booted out at 5 am and they never sent my results to my doctor. Total waste of time.

 

When I was very severe I could only sleep 60-90 minutes at a time. Now it's usually 90-180 minute segments to start the night and then smaller segments closer to getting up. I get to sleep promptly at the start of the night most of the time but it's common that I'll be awake for 1-3 hours in the early morning while I'm trying to keep sleeping. Which is obnoxious.

I took ambien (zolpidem) for a long time but had to stop as I developed some sort of intolerance. It's wonderful to basically be able to sleep on command. Overall though I think my sleep has been better quality without it. I couldn't take it when I was really severe because I was afraid of the effect on breathing.

Even when I was perfectly healthy I would almost never sleep soundly through the night.

 

I suppose by biphasic sleep I mean at least somewhere between 2-3 hours awake between 2 separate sets of sleep.

So go to sleep at 1030PM wake at 2AM. Awake from 2AM-430AM. Second set of night sleep from 430-8AM. Something like that.

ETA— I posted this at the same time as the @James Morris-Lent post— this basically what I was referring to as biphasic sleep.

 

Stories like yours are why I did not do a full sleep test at a lab. I've heard so many stories from ME/cfs patients saying that it was a waste of time, except for a few cases where apnea was found and a CPAP machine helped.