Sleep problems in ME/CFS - discussion thread

I am going to try this. Is there one brand in particular that you tried?

 

HRT is a tricky one for me. Because of my history of blood clots, my gyno refused to prescribe even the Estradiol patch despite the fact that on the front page of the American College of OB/GYNs it explicitly states that the patch does not raise the risk of clots because it bypasses the liver. When I tried to push back on that, she simply came up with another reason not to prescribe (I get headaches that at one time were dx as migraines but probably aren't). It was clear she just didn't want to prescribe it. She did prescribe progesterone alone, but that actually kicked off a whole new round of horrible hot flashes (to say nothing of awful affective symptoms) and may have caused my bad crash this summer (or it might have just been coincidence). The worst is that the hot flashes that wake me up at night also cause this terrific pain that, at its worst, feels like a blood pressure cuff made of broken glass squeezing the tissue beneath my skin. So now I must wait until next year to get into a specialty menopause clinic.

Er...sorry, I think I've taken this way off topic. Venting I suppose.

 

I use either Gron chocolates or Tasty's gummies. I wasn't sure if it was ok to link to their websites from here given that S4ME is a UK site and cannabis is still illegal there.

 

There's definitely a hormonal aspect to insomnia.
My daughter gets no sleep at the beginning and end of her period. Like clockwork . Drains her more.


Tried slow release melatonin years ago but it just ramped up headaches after a couple of weeks - perhaps her body prioritised it's anti oxidant properties over sleep .

Vampire behaviour ( sleep reversal) seems to be concentrated in winter which always coincides with a downwards slide health-wise , so could be part of the regression process.

We know so little about the intricacies of sleep .

 

I know, right? I read Matthew Walker's Why We Sleep a few years ago but like most neuropsychs he so overeggs our knowledge about what we actually do know about sleep (and some would say he's just flat out wrong about a lot of what's in there).

My understanding is that the hypothalamus is apparently rich in estrogen receptors, so hormone fluctuations may then affect sleep, temperature (hot flashes), mood, etc. I can definitely attest to increased insomnia during the luteal phase of my cycle. And, of course, perimenopause has been a nightmare.

 

@Michelle Thank you. I'll order online.

There are 3 cannabis shops on the main street a block from where I live but there are so many products to choose from, I didn't know what to buy.

 

When I went to a state-run dispensary in Seattle, it was staffed by budtenders, who were really well informed. I wouldn't have known what to buy, either, if I hadn't had guidance.

I asked for a product to help with pain and inflammation that wouldn't get me really high, and the woman helping me suggested a very low THC edible. I found it really helpful. My sister asked for something that would help boost her mood when socializing, and she got a different product. I have to say that these budtenders seemed really happy with their jobs!

In Canada, are the cannabis shops government run, or can private businesses sell cannabis?

 

Provinces and municipalities are responsible for developing their own regulations for sale and distribution. I'm assuming they are private business owners.

I went to one shop years ago b/c it was close by and the guy spoke like a chemist. He was very passionate about the products and I appreciated his knowledge, but got a little fatigued from standing and listening. I should have explained that I wanted something for hormonal/meno insomnia.

Agree!

 

This is true and I think the longer daylight in the summer affects sleep too. My brain feels much more relaxed during the darker longer days in the winter.

 

Thank you to all of you. The cannabis thing is interesting. I've had lots of people suggested for various ailments I have, but they weren't knowledgeable people so I kind of felt like it was snake oil du jour. But I definitely trust you all. The tricky thing will be figuring out if any of it is contraindicated with the long list of other meds I'm on for everything from rheumatoid arthritis to various GI issues to depression/ anxiety management.

As for hormonal stuff, it's possible that I was already perimenopausal when the sleep issue got particularly bad around the time I turned 40, but before then and until age 52, I was on an estrogen-based birth control pill which meant I had no other menopausal symptoms that other people have described. No hot flashes for instance, and I forget what the other symptoms are. I am now over 3 years post menopause and the sleep is just getting worse as my ME is getting worse.

 

I officially started menopause at age 53 and the insomnia keeps getting worse over time.

I'm headed for a nearby cannabis shop on Wednesday (hopefully), 5 minute walk from my place. I've done a little reading (based on Michelle's experience), they have a gummie product that is 1:1:1 CBN/CBD/THC- contains 2mg each. They have 5 gummies per pack so I will give it a trial to see what type of reaction I get and go from there.

 

Sleep is an active biochemical process, orchestrated in different ways at different times across the brain. Its initiated by, amongst other things, a release of prostaglandin D2.

Sleep is not a passive letting go. If you are fixated on some thoughts or feelings that block sleep, then dealing with those might help. So in mild situational insomnia, anything that makes you drowsy or relaxed might help, so CBT might have some limited value.

I am far too out of date on the science of circadian regulation to be sure of much, but there are multiple chemical clocks in different parts of the body, and suprachiasmatic nucleus regulation of sleep was known to be regulated by at least fifteen different things, including chemical concentrations, some decades back. Now we know there might be a second regulation location in the brain stem, but I know nothing about that. Its not simple.

CBT might help you let go and therefore relax, but if the biochemistry of sleep is perturbed it will do nothing.

Insomnia is like stage one sleep disorder, based on a listing I read years ago. Stage or rank 5 is non-24 hour disorder, typically attributed to blindness due to loss of light entrainment. I have it and so do many with ME I have talked to over the years.

I also have what I consider two further stages at times. I call the next aggressive non-24, where sleep does not move an hour a day, but 4 or 8 or 12 hours a day.

After that is the one I find the worst, total loss of circadian rhythm. I sleep when I sleep, for short periods, randomly, with no obvious pattern. If I try to go too long without sleep its a problem.

To complicate things I get something I call non-narcolepsy. I feel an overwhelming need for sleep that hits suddenly, but unlike narcolepsy proper I can fight it ... if I do nothing else but fight it. That renders me incapacitated. Much better to just go sleep.

We also have circadian reversal at some prevalence, typically only seen in African sleeping sickness, I know several ME patients who have it including me. It might be related to alterations in PGD2, as suggested for African SS. Prostaglandin D2 might be related, though it might have other causes. If deficiency of prostaglandins is involved then it might also relate to salicylate sensitivity, which in turn is related to oxidative stress and glutathione.

I am now in my 55th year of ME. Some of these issues took decades to show up. I got hypersomnia in the earlier years but it gradually got displaced by various issues preventing sleep.

CBT tries to be a one stop shop, applying simplistic methods to complex problems, and if its like other applications of CBT research we are aware of its extremely unreliable research, and sometimes verging on scientific misconduct, and in at least one case actual scientific misconduct. As others have said, its an admission of failure. Do CBT because we don't have a clue how to fix what is wrong, or even what the mechanisms are!

 

It's always been insomnia for me with my ME. I hate to think how many hours I have lost over the period of 22 years from very severe ME until now.

The severer the ME the worse the insomnia. In my very severe years I was getting 2 hours, or 4 hours sleep a night. Now at moderate I manage to get at least 6 hours sleep most nights except for when PEM is worse than usual.

 

The issue for me is 'brain chatter' and thoughts that won't stop before I go to sleep. I've tried breathing techniques which helps a little, but that feeling of rage and resentment builds up. It's weird.

Why do some women only experience 6 months of mild symptoms while others go through hell? Insomnia/night sweats are the worst symptom for me.

 

Has anyone been offerred this? -
"QUVIVIQ (daridorexant) – Europe’s first dual orexin receptor antagonist – is now available for patients with chronic insomnia disorder in Italy and Germany"

https://www.nice.org.uk/guidance/ta922/chapter/3-Committee-discussion
https://www.idorsia.com/investors/news-and-events/media-releases/media-release-details?id=2875642

My daughter had a sleep study in June 21, after an initial phone appt in June 2020.
This followed appts with Dr Gall, POTS neurocardiologist at Kings.

We weren't really expecting much, but the feedback was good.
The study had shown poor sleep efficiency at 65%. Is usually in the 90s for young adults. Amount of deep sleep was small and very fragmented. There were only a couple of sessions of REM, which occurred towards the end of her sleep (usually much earlier). The initial time to get to sleep was over an hour. There was a great deal of N1, which is light sleep and should only be about 5% of total.

The doc was very understanding re the life-changing impact ME is having on sleep and daily function, accepted that the NHS ME/CFS clinics had not helped, that sleep hygiene measures made no difference.

The hospital is going thro the stages of approving the above drug and he is quite hopeful that she would be a good candidate to try it.
She will do some insomnia CBT first... online. But she is OK with that.

This might be of significant help. Even a small inprovement, could make a big difference.

 

Interestingly, the sleep study and follow-up was at Guy's, all part of the "King's" network.

 

Absolutely @NelliePledge, I thought that they could only help with sleep apnoea, restless legs etc.
When they then recommended the Sleepio App and the following book, I was not hopeful.

Overcoming Insomnia and Sleep Problems: A Self-Help Guide Using Cognitive Behavioral Techniques Paperback – 26 Jan. 2006
by Colin A. Espie (Author)

The above book is as bad as it sounds.

The study did at least show that when she was not awake the patterns of the various stages were very far from normal.

I think that Dr Gall, is keen to involve doctors from a range of specialisms to raise awareness and curiosity.