Sleep problems in ME/CFS - discussion thread

[shak8]

I'm on a lot of meds just to allow me to sleep. Without even one of them, I, like many of you, get ever increasing insomnia that leads to heart arrhythmia, leg cramps, other issues. Some of my docs in the past have said sleep is most important, so not to worry about all the meds. But a few seem to be habituating: clonazepam and gabapentin. Understandably, my new rheumatologist and my mom in law (a biologist) want me on fewer of these, and I'd love not to need them. Rheumatologist says I shouldn't be needing any meds to sleep and has recommended CBT insomnia, which seems to be a proprietary app. (I have trouble with screen time. Part of the sleep hygiene I've practiced for years involves no screens at least an hour before bed, preferably two, and having my phone screen on grayscale while using blue light blocking glasses.)

Has anyone else tried this? It is helpful/a good idea?

I have taken a quarter of a 1mg pill of clonazepam PRN whenver I can't fall sleep on Trazodone (25-50mg). I have done so for 20-some years without any issues of habituation that I can tell.

If concerned about that or if you require higher doses, why not employ two different sleep inducing drugs (or three), try them out and then take the ones that work, on alternate nights or every three nights.

If you have sleep problems that persist despite your efforts, then a trial of meds is medically indicated.

I have FM and since the onset of the condition have had sleep problems, both falling and staying asleep and every single night, without exception. Typical FM pattern is waking up 10 or more times a night---called sleep fragmentation. Impedes muscle repair because of not enough time spent in deep sleep stage. Not to mention mood, energy levels the next day.

ETA: I know there are drug-drug interactions and serotonin syndrome that have to be taken into account here. Good luck!

 

[SunnyK]

I have taken a quarter of a 1mg pill of clonazepam PRN whenver I can't fall sleep on Trazodone (25-50mg). I have done so for 20-some years without any issues of habituation that I can tell.

If concerned about that or if you require higher doses, why not employ two different sleep inducing drugs (or three), try them out and then take the ones that work, on alternate nights or every three nights.

If you have sleep problems that persist despite your efforts, then a trial of meds is medically indicated.

I have FM and since the onset of the condition have had sleep problems, both falling and staying asleep and every single night, without exception. Typical FM pattern is waking up 10 or more times a night---called sleep fragmentation. Impedes muscle repair because of not enough time spent in deep sleep stage. Not to mention mood, energy levels the next day.

ETA: I know there are drug-drug interactions and serotonin syndrome that have to be taken into account here. Good luck!

Thank you so much, @shak8 . Definitely if I had just been taking clonazepam PRN, I'm sure I wouldn't have become habituated, but I don't tolerate trazodone and was prescribed daily clonazepam back about 17 or 18 years ago. So yes, I've become habituated. I have also it seems become habituated to Gabapentin. I think the trick is finding something that will actually work for me that is not habituating! I really appreciate what you said about the necessity of sleep for body functioning, because that is certainly what I have found.

I am curious if anyone else out there has found that they need a certain amount of daytime sleep in order to be able to sleep better at night? I realize that for a lot of folks, we just take sleep when we can get it and are not on a normal 24-hour schedule. Because I have a certain daily regimen I have to follow for getting nourishment into my gut and getting meds for other conditions, I have to try to follow the average day/night schedule as much as possible. I find I sleep much better when I have a 1 to 2 hour nap in the afternoon, but nearly every doctor I talk to tells me I should not be napping because that will keep me from sleeping at night. When I try to tell them my experience is the opposite, I think they believe that I am deluding myself. Unfortunately, I also need medication to be able to get in that nap. And I think that is where most doctors completely balk. Even if they are willing to entertain the notion of my taking night time sleep aids, afternoon sleep aids just sound like a bad idea. And even as I write this it sounds like a bad idea to me, except that I know what happens when I don't do it.

 

[Belvawain]

I can relate to the struggle with sleep issues in ME/CFS. I’ve also had doctors tell me to avoid napping, but I find that a short afternoon nap really helps me recharge. Without it, I end up feeling exhausted at night, and it definitely affects my sleep quality. It’s frustrating when you know what works for you, but others don't see it.

I started exploring THCA hemp flower as a natural way to help me relax before my naps. It’s been nice to have something that doesn’t make me feel groggy afterward. Sometimes, it’s all about finding what works for your body, even if it doesn’t fit into the typical advice. Trusting your own experience is key, especially when you’re managing different conditions.

 

[Peter T]

I can relate to the struggle with sleep issues in ME/CFS. I’ve also had doctors tell me to avoid napping, but I find that a short afternoon nap really helps me recharge. Without it, I end up feeling exhausted at night, and it definitely affects my sleep quality. It’s frustrating when you know what works for you, but others don't see it.

I wonder how many of us find trying to follow the injunctions of the ‘sleep police’ actually results in poorer sleep. Personally I find just rolling with the sleep patterns my ME throws at me works better than trying to fit in with perceived correct sleep patterns.

 

[Kitty]

Personally I find just rolling with the sleep patterns my ME throws at me works better than trying to fit in with perceived correct sleep patterns.

This! It's amazing how much guilt there still is, though.

The other day I didn't wake up till 12:30 pm, and there it was: "Look at you, laying in bed half the day". But as I'd been wide awake until 4:00 am and wouldn't have fallen asleep until some time after that, there was no lazy teenager vibe about it at all. I was getting the normal amount of sleep, just at a slightly unusual time.

 

[NelliePledge]

This! It's amazing how much guilt there still is, though.

The other day I didn't wake up till 12:30 pm, and there it was: "Look at you, laying in bed half the day". But as I'd been wide awake until 4:00 am and wouldn't have fallen asleep until some time after that, there was no lazy teenager vibe about it at all. I was getting the normal amount of sleep, just at a slightly unusual time.

That’s quite a common schedule for me. I usually wake around 11 go to the loo take my paracetamol etc and go back to lying in bed for about an hour until the paracetamol takes the edge off

 

[JellyBabyKid]

I find that a short afternoon nap really helps me recharge. Without it, I end up feeling exhausted at night, and it definitely affects my sleep quality

Yes! I have had to have an afternoon nap since I had lung surgery (one of the contributors to me ME) 14 years ago and it is not an option - my body will insist at some point and if I try not to, or have over done it I wake up at 1am for at least an hour - and this totally disrupts how I feel the next day, as any sleep after that is broken and dream riddled - often truly awful nightmares.

In a really bad crash I need a morning nap too. I rarely manage more then 90mins total even with two naps, no matter how exhausted and PEM I am..it's really weird, like I am always in sleep debt but I cannot ever sleep enough to make up the deficit

how much guilt there still is

Yes. This. And it's friend; extreme frustration.

 

[Yan]

Showing a screencapture of my last year's sleep data from my smart watch (hope I'm doing it right!). The reason I'm not showing this year's is that it became uncomfortable to wear the device so I didn't wear it for about 6 months and the graph doesn't look nice. Although not perfectly accurate, I think this shows what non-24 hours sleep disorder looks like. There's a problem with most(?) sleep recording devices/software that they don't understand this kind of sleep. For example my smart watch has a setting where I have to input when I usually sleep (from which hour to which) and it often ignores other times. Also naps are not shown. I think that it could be overcome by manually changing the setting every few days but I haven't bothered..

For me my sleep cycle advances every day about 1 hour in average. Almost never backwards. In the picture it's visible that on July-August my cycle stopped for about a month. This sometimes happens for reasons I don't understand. But if I forcibly try to do it, it backfires with poorer sleep quality, more fragmented sleep, and longer naps. I also believe that this is caused by my ME/CFS symptoms severity. Ie. When I'm feeling less symptomatic my sleep disorder probably gets less "runny". I haven't found melatonin supplement of any use in correcting this either.

A large problem for me is that the society isn't built for this, at least not on our planet! I need to plan appointments according to my cycles so that I'd be at my most likely best moment for those. For that reason I dread longer waiting periods where I have no control (other than cancel the appointment) on deciding dates/times. Also lot of laboratory tests require that it'd be taken for example in the morning during 7-9. I'm not sure how reliable my tests are even if I manage to fit those to my sleep-wake cycle.

I had a sleep study performed about 5 years ago. I got the monitoring equipment from hospital to do it at home. The problem was that it too was scheduled tightly on one night decided by hospital staff, and unfortunately my cycle at the time was that I was sleeping at day. I only managed to sleep a bit over hour during that night. Even though it barely recorded any normal sleep of mine, and I explained my situation, they managed to diagnose me with mild sleep apnoea. And it have backfired years later when visiting a doctor for a problem that was not very much related to sleep. That doctor wrote to my documents something like "patient's sleep is very fragmented and is often sleeping only 1-3 hours per night so symptoms are probably caused by poor sleep". I don't know for certain where they got that, but i suspect that it was from that old dubious sleep study data. Also on different appointment I tried to show a graph similar to the picture I've uploaded here and the doctor just ignored it saying that it'd have to be recent(that time I was not wearing any devices to be able to show recent data). The stiffness of the system is very frustrating sometimes.

For people suspecting sleep apnoea I'd recommend trying a smart phone app to record the sounds during your sleep. If it shows lot of sounds/snoring, then it could be basis to ask for a sleep study. That's how I got mine at least. I tried using a CPAP for 6 months but found no benefit from it and discontinued it with agreement from doctor. Also my AHI rarely got to apnoea levels. But still it was a worthwile experiment I think.

Sorry for the long message.

 

[Sly Saint]

Has anyone tried mouth taping?
Mouth taping: benefits, how to do it and if it changes your face

 

[shak8]

Has anyone tried mouth taping?
Mouth taping: benefits, how to do it and if it changes your face

I was thinking of trying that, though not for sleep, but for when I walk in the neighborhood, socially isolated that I am.

 

[Haveyoutriedyoga]

LOL what a silly thing to do...

Yes.

Has anyone tried mouth taping?
Mouth taping: benefits, how to do it and if it changes your face

Edited just in case it came across unintentionally rude!

 

[perchance dreamer]

Has anyone tried mouth taping?

I've done mouth taping before bed ever since I read James Nestor's book on breath. It really helps my sleep.

I don't tape my entire mouth, just a small piece in the middle of my lips. If, for some reason, my nasal breathing failed while I was sleeping, I'd still be able to breathe. I've never had a problem with mouth taping, just benefits. I use Durapore medical tape or Nexcare cloth tape, which I buy from Amazon.

 

[Trish]

I listened to the Radio 4 health program from this week. They advised against experimenting with mouth taping on grounds of problems with choking on saliva or vomit.

 

[Yan]

Having a full beard and chronic stuffy nose I can only think of taping my mouth with horror. "Forgetting" to breath, then suddenly brain remembering that oxygen is quite essential and gasp for breath. But being unable to open the mouth or breath well trough nose the only choice is to quickly rip away the tape. Ouch!

 

[Haveyoutriedyoga]

I can't remember it working noticeably well , I think I tried it shortly before having a polysomnography sleep study which showed no sleep apnoea.

They did find I had Periodic Limb Movement Disorder, a few points over the threshold - not sure whether that affects its significance but PLMD gets worse the less rested you are, which interests me.

I recommend Sleep by Nick Littlehales to those who haven't read a lot of self help books about sleep already.

 

[Haveyoutriedyoga]

Sleep disturbances in MECFS by the Bateman Horne Centre

Primary sleep disorders and ME/CFS

‣ Treating primary sleep disorders may or may not help the symptoms of ME/CFS (Libman et al 2009, I0M report)

‣ Studies comparing clinical presentation of ME/CFS patient with and without sleep disorders have found no differences between the two groups (Le Bon et al 2000, Libman et al 2009, I0M report)

‣ There is evidence to suggest that primary sleep disorders should be considered important co-morbid conditions. There is little evidence that treatment of primary sleep disorders improves ME/CFS symptoms.

I like some of the Bateman Horne stuff, but slightly questioning the latest outputs on craniocervical instability and surgery.

 

[SunnyK]

I can relate to the struggle with sleep issues in ME/CFS. I’ve also had doctors tell me to avoid napping, but I find that a short afternoon nap really helps me recharge. Without it, I end up feeling exhausted at night, and it definitely affects my sleep quality. It’s frustrating when you know what works for you, but others don't see it.

I started exploring THCA hemp flower as a natural way to help me relax before my naps. It’s been nice to have something that doesn’t make me feel groggy afterward. Sometimes, it’s all about finding what works for your body, even if it doesn’t fit into the typical advice. Trusting your own experience is key, especially when you’re managing different conditions.

Thank you, Belvawain. I appreciate knowing I am not the only one, and I also was interested in hearing what helps you.

It looks like you are a fairly new member to the Forum, so a belated welcome from me!

 

[SunnyK]

I wonder how many of us find trying to follow the injunctions of the ‘sleep police’ actually results in poorer sleep. Personally I find just rolling with the sleep patterns my ME throws at me works better than trying to fit in with perceived correct sleep patterns.

Definitely, Peter, and if I didn't have medications that need to be taken, or need nourishment (my gastro doctors, because of my gastroparesis, want me eating six small meals a day and I told them there was just no way I could do that, especially since I am supposed to be upright for an hour after each one ) on a schedule that assumes a "normal" waking and sleeping pattern, I would just go with the flow and probably not need a lot of the meds that I take to help me sleep.