Request for resources - sleep

[Saz94]

Can anyone suggest some resources explaining that people with MECFS often need medication support with sleep long-term?

My psychiatrist has started me on trazodone, but i get the impression that he views this as "helping me to get off the zopiclone" - rather than recognising that the whole reason i developed the zopiclone addiction in the first place is because of the sleep issues caused by MECFS.

I'm in the UK by the way.

 

[Jonathan Edwards]

Can anyone suggest some resources explaining that people with MECFS often need medication support with sleep long-term?

I don't think there is anything that indicates that long term sleep medication is useful and safe for people with ME/CFS any more than for people with other problems. I suspect that 20-30% of the population have chronic insomnia for one reason or another and if there was a safe and effective solution they would all be on it.

 

[Saz94]

I don't think there is anything that indicates that long term sleep medication is useful and safe for people with ME/CFS any more than for people with other problems. I suspect that 20-30% of the population have chronic insomnia for one reason or another and if there was a safe and effective solution they would all be on it.

Well I'm pretty sure it's less safe for me to be sleeping less than an hour a night

 

[Mij]

I took low dose trazodone for sleep years ago and it worked very well for me and my natural sleep came back after 2 years. I had no issues getting off it. It's non addictive.

Trazodone did nothing for my friend who had severe insomnia for 18 years since ME onset though. He tried many sleep meds and had to take off-label Ambien. His insomnia was severe.

I wish they could figure out severe insomnia in ME/CFS.

 

[Mij]

My ME doctor prescribed Imovane in the mid 90s. I ended up not taking it because trazodone worked ok and was much cheaper in price.

I hope trazodone works for you.

 

[Peter T]

The NICE guidelines indicate the need for symptom management and indicate sleep issues is a feature of ME/CFS, but whether a psychiatrist would interpret this as supporting long term use of sleeping pills is up for grabs.

 

[Saz94]

The NICE guidelines indicate the need for symptom management and indicate sleep issues is a feature of ME/CFS, but whether a psychiatrist would interpret this as supporting long term use of sleeping pills is up for grabs.

Yeah the guidelines section on "rest and sleep" doesn't say anything about medication, and the section on "symptom management" doesn't mention sleep

 

[duncan]

I don't think there is anything that indicates that long term sleep medication is useful and safe for people with ME/CFS any more than for people with other problems. I suspect that 20-30% of the population have chronic insomnia for one reason or another and if there was a safe and effective solution they would all be on it.

I'd be careful combining "useful and safe" in the same sentence - for people with intense chronic diseases like ME/CFS, half of that equation has had its significance diminished.

20-30% of the population don't have ME/CFS.

Some pwME report severe consequences for not achieving a certain sleep threshold.

 

[Jonathan Edwards]

Some pwME report severe consequences for not achieving a certain sleep threshold.

They may do but how could they possibly know that the 'consequences' were due to the lack of sleep rather than the lack of sleep being another consequence of the same cause (of these consequences, whatever they are)?

Anyway, let's keep this thread to @Saz94 's specific request.

 

[duncan]

They may do but how could they possibly know that the 'consequences' were due to the lack of sleep rather than the lack of sleep being another consequence of the same cause (of these consequences, whatever they are)?

They learn. And these two issues are almost certainly tied into one another. They just learn to distinguish the root issue from an immediate downstream event. It's similar to avoiding PEM as best as you can; you become sensitive to key thresholds.

 

[Jonathan Edwards]

Anyway, let's keep this thread to @Saz94 's specific request.

 

[duncan]

Can anyone suggest some resources explaining that people with MECFS often need medication support with sleep long-term?

Understandable request.

I don't think there is anything that indicates that long term sleep medication is useful and safe for people with ME/CFS any more than for people with other problems. I suspect that 20-30% of the population have chronic insomnia for one reason or another and if there was a safe and effective solution they would all be on it.

How does this keep the thread specific to @Saz94's request - other than undercut it? I've had a few well-known MECFS experts recommend sleep meds to me.

 

[Mfairma]

There’s a small section on sleep on page 12 of this paper on managing ME:


Pharmacologic section reads:

“Trazadone, low-dose tricyclic antidepressants (eg, amitriptyline, doxepin), mirtazapine, antiepileptics (eg, gabapentin, pregabalin), clonazepam, cyclobenzaprine, zolpidem, eszopiclone, tizanidine, suvorexant, topiramate, hydroxyzine, alpha blockers (eg, clonidine, guanfacine, prazosin), diphenhydramine”

Personally, I’ve taken mirtazapine since 2011. I’ve gone off it a few times without difficulty, but my sleep becomes more shallow. I wake during the night, frequently wake a couple hours earlier than I would while medicated, and feel quite a bit worse, particularly on days I wake early. I’ve taken 4-7 mg nightly. It’s been the most beneficial medication I’ve tried by a very long margin.

Earplugs have also been very helpful.

 

[duncan]

There’s a small section on sleep on page 12 of this paper on managing ME:

I think I've had at least three of these well-known research/clinicians recommend sleep meds for my ME/CFS. Four?

Go figure.

Maybe there's an experience gap between theory and practice that clinicians often can bridge better than academians. - and thereby better serve the patients both profess to represent.