Of all the things you hear about the digestive tract / microbiome research and the supposed influence it would have on the brain and general functioning of the body (a lot of which I am actually very skeptical about most of the time, something you would not expect from someone in my situation) they hardly ever talk about it having a relationship with sleep.
Well have I got news for you. Because of all the strange effects you get with this disease sleep problems / changes is a major one. You never ever sleep well if you have this disease severely. You never feel really rested anymore either.
I can even look back at my youth to see this whole process developing completely linear with the development of the disease. I was always a bit of a night-owl type, mornings are not my thing only in the afternoon I started to feel really awake and got going a bit. Sleep was still okay though. During my illness I took many saliva cortisol tests and when plotted out throughout the whole day the results look almost like a slightly down sloping straight line, starting not at a very high level and gradually ending at the bare minimum. There is no “get-go” for me in the morning and I believe something like that was already happening in my youth.
In the years before I finally fell ill I can see my overall sleep getting worse and worse. I started to move to biphasic sleep, I needed a nap later on somewhere in the day. In the beginning I did not think much of it there are many cultures who have a siesta right ? But my long sleeping hours in the night got ever more shorter and I needed the nap ever more and more. At the peak of my illness I slept only about 3 or 4 hours max and at least 2 naps later. That window of the longest sleep could also be almost anywhere in the night though started very late usually at 3 AM or 4 AM. But it could just as well be 11 PM to 2 AM and I would be awake all night till 10 AM in the morning and then take a nap again because I felt incredibly tired. But I could also not have any sleep at all in the night when I simply could not fall asleep and felt “wired” with tossing and turning and I would just give up and only go to sleep at 10 AM in the morning and sleep till 2 PM or so ! Not one day was the same ! Completely sleep-pattern disrupted. Also waking up in the middle of these short sleeping episodes sometimes so not even those short periods would happen uninterrupted.
Another important thing to mention is that apart from sleeping I could lay in my bed something like 8 times a day just for a moment when I felt tired and feeling like a complete wreck with pain everywhere and such. If there was no time for that because I had to go somewhere during the day this would all add-up to a more severe “crash” afterwards of which I had to recover. My bed was extremely important ! I had all these sleep and tiredness “attacks” sometimes where I simply felt I absolutely had to take a break and lie down. I really, really needed it then.
Also if I would sleep for a lot longer time than usual on a rare occasion after a crash or built up sleep deprivation I am a complete wreck. Pain everywhere, groggy not awake afterwards etc. It hardly helps… In short : I have never felt like I have slept well or felt really normal for many years now, I don’t know what that is anymore. And even though trying to get enough sleep is always a good thing and slightly better it never leads to feeling rested anymore no matter what I do.
It seems the acetaldehyde is a strong sleep influencing substance.
I think there are actually some clues to this if you look at alcohol research. People who get drunk may want to go to sleep / fall asleep easily afterwards, we all know that right ? But sleep quality is scientifically proven to be bad as far as I know. It seems the acetaldehyde may play a part in this.
Another clue might be the people with the genetic differences (mostly Asians) who metabolize alcohol poorly and have much higher acetaldehyde levels when drinking. And I have a lot of those symptoms these people have in general too because of my disease. Reported feelings under the eyes / puffy eyes / bloodshot eyes / skin changes and much more I have had exactly the same thing happening but for me it was a daily occurrence.
One of them said the acetaldehyde effect made them feel sleepy. Well that is what I have too :the higher my acetaldehyde levels get I feel more tired, in general I don’t want to do anything anymore and actually want to lie on my bed more often and when this is severe I might actually fall asleep. I can force this effect somewhat by eating lots of carbs and such which can produce higher acetaldehyde levels overall and this makes me more ill but also produces the wanting to go to sleep effect. Paradoxically when I try to treat my disease with taking anti-microbial stuff (to try to kill something living inside me) this can also produce more endogenous acetaldehyde because it “reacts” and I get the same effect : I just don’t feel well don’t want to do anything anymore, become more incapacitated and feel more… sleepy. The more ill I was the stronger all these effects were.
And this disease is full of paradoxic effects because on the other hand it also keeps you awake at times even when you are very tired because it disrupts the sleeping pattern completely but also because you feel you can’t “shut off” and you keep on thinking. It can make you wired / exited in all kinds of thought processes.
I believe this also has to do with what people with ME / CFS describe as the “wired but tired” feeling.To understand why this is happening you need to know that the acetaldehyde influence on the brain has some strange energetic component to it too. In fact it is also part of the temporary energy rush / euphoria effects of what happens when somebody gets drunk from alcohol for a certain period of time. The ethanol (alcohol) is the “enabler” of this whole process they work together. But the acetaldehyde also seems to be involved in the energy crash afterwards of thedrunk person.
However if you constantly walk around with high endogenous acetaldehyde blood levels day in day out all the time on its own it turns you into a complete wreck and you constantly feel very tired and “crash” after the slightest physical and mental effort. But you still have that weird slightly energetic component going on also sometimes. So you can have two things happening at the same time.Sometimes I could even use this strange form of “wired energy” effect when doing something during the day but I would always crash more severely afterwards, there is only so much energy available that you can use up and you always pay for it in the end.
So you can be tired / a wreck / sleepy and restless / wired / keeping you awake all together in a strange alternating mix…. Does not sound very good for overall sleep quality does it ?
Another interesting observation looking at the past is that sometimes I had a bad day. Just one of those days when you don’t feel that well and nothing is going right, the kind of useless days you want to forget about and hopefully tomorrow will be better. The more I was progressing towards falling ill the more these kind of bad days were happening. They were the beginning of what later became serious dysfunctioning in so many ways.
And I can remember thinking at those times : “this is not a very good day I don’t feel that good maybe I did not sleep well” as a cause for it. Well that may have been the case too sometimes but what I was actually feeling was simply a higher level of disease. I was simply more ill than other days. It has some “waviness” to it in severity and sometimes it seems to almost have a bit of a life on its own in its effects, not every day is the same and you get good and bad days as a result. Something was influencing me without me being aware of what that thing was. Although the general trend was that it was getting worse throughout the years not every day / week or even month was the same. I now know that a lot had to do with what things I ate / drank having some effect later on.
The good news is that sleep has improved quite a bit as I managed to make my disease less severe. Less acetaldehyde = better sleep. These days I can sleep for about 5 hours relatively uninterrupted without my sleeping hours being all over the place and an hour long nap or so somewhere later in the day. On very good days I can even skip the nap sometimes. Far from normal but I feel a bit more awake. Overall a good improvement on how it used to be.
Who could ever have imagined that the digestive tract had such a strong direct influence on sleep ? All working in the background of someone’s life without being aware of what is actually causing it.
This is truly a very interesting and important discovery.