What does sleep deprivation in body? - I had almost remission for 2,5 month

[MartinK]

Hi all. I would like to seriously look into this topic and find out the causes that could have been behind my amazing improvement.
Wish it would help more of us...

Long story short: I experienced crazy sleep deprivation after the wrong sleep medication. I thought it was my end, but it ended up causing the biggest improvement in my ME/CFS that we have ever experienced.
After 14 days with minimal sleep (1-2 hours, maximum 3 hours) I started getting amazing waves of energy.
Their effect was increasing, PEM disappeared, other symptoms also disappeared, such as severe pain, massive burning sensations, fatigue. And I still only slept 3 hours!

Over the next 14 days I went from very severe to moderate. Sleep also started to improve.
Living almost normally again was wonderful. It lasted for 2,5 months after that the symptoms started to return.

I want to challenge you all - please, let's discuss, let's find out what changes occur in the body during sleep deprivation.

Maybe it's a chance to find improvement for more of us. I'm terrified of trying to induce sleep deprivation again. But what if it is possible to get benefits even without it, when we come to see what mechanisms and changes it causes?

My ideas:
- it change chemistry in brain (as if the brain stops sending faulty signals to the nervous system, which causes a cascade of symptoms)
- immune system suppression (another idea, but in my case I tried some immune suppressants without success in past (Rapamycin, Methylprednisolone))
- change in hormones (however, in my case, I never noticed a hormonal imbalance)

*btw. I'm one who have some benefits benzos, pregabalin and tianeptine - that's why I lean mainly towards changes in the brain

Can some scientist help us with this? Who to contact?

Thanks everyone in advance!
Martin

 

[Wishful]

My guess is that there are simply too many potential factors for anyone to answer the question. That it's affecting brain chemistry is a reasonable hypothesis, but which chemical ratio? Too many possibilities, and that's just with the known ones. On top of that, it may be multiple chemicals involved, and no one on its own would provide the benefits.

I've had temporary remissions from several different sources, and didn't see any way to follow up on those to make them a longer term treatment. Supplemental iodine or T2 gave me temporary remission, but how to find a researcher who not only has the potential to figure it out, but would be willing to? I just accept it as evidence that ME is treatable: that there is an answer to be found someday.

On a positive note, reliably inducing insomnia is probably a lot easier than treating insomnia, so if you think it's worth it overall, you can experiment. ... with bloodshot eyes.

 

[Florida Guy]

Many people have reported a stressful event that precipitated cfs. An injury, an illness, an emotional event or just a vaccine. Its sort of like something jolted them into the disease state. Its not too big a stretch to think that some other event could flip the person back to normal. Lack of sleep is a stressor and that seems to make people worse. You may have gotten a random improvement, try to nurture it

Things that make an improvement seem to involve pacing, avoiding stress, eating well and getting enough sleep. You risk going backward to a level worse than before your improvement if you push yourself too hard. GET makes people worse.

Were you doing anything different when symptoms began to come back? Were you still pacing and avoiding stress and excess effort? Its tempting to do more when you feel better. If I were you I would go back to taking it slow and doing the things that help. Forget the sleep deprivation. If it worked, hundreds of thousands of people would recover each year and the word would have gotten out long ago

 

[gregh286]

Well agreed that we wake up dead and worse after more sleep at times.
I also can have more.energy with less sleep but it's not a banker....but does have high correlation.

 

[pattismith]

Long story short: I experienced crazy sleep deprivation after the wrong sleep medication.

Hello Martin,

it's nice to ear you had this improvment, even if it didn't last.
It gives hope you will find a way to experience it again!

What sleep medication are you talking about?

 

[MartinK]

@Wishful yes, hard to find answers but I try my best because there is unbreakable hope and it keeps me afloat. You know, if I knew it would 100% happen again after another sleep deprivation, I would have done it without hesitation. However, I am afraid that there are also risks and most importantly - going through it was really painful.

I respond well to meds that affect GABA, I'm wondering if something has happened in that area. Another consideration is dopamine. I know several people have had significant improvement with Abilify, which increases dopamine. I would like to try to significantly reduce glutamate, that might be another good test.

@Florida Guy yes, yes, I also agree with @Wishful on this - I believe that our diseases can be easily cured if we know the right key. I think our bodies are not destroyed by disease, only something keeps us sick... one of my thoughts is that the brain is sending the wrong signals to the body (which is why I had such an improvement after sleep deprivation changed something in the brain)

Another consideration of mine - I assume that if my illness was controlled by an infection or a virus, I would only experience worsening symptoms after sleep deprivation due to immune system suppression. Therefore, I think that no infection or virus may be involved.

@gregh286 is that energy instantaneous without PEM? Because one night without sleep gives me a huge PEM! My improvement happened after 14 days of sleep deprivation...it took a long time.

@pattismith thank you! Big hope! Now I'm back to the baseline and it's very hard for me. My sleep was ruined by the switch to antipsychotics - Sulpiride and then Quetiapin. But I don't want to distract this discussion with it ;-) I want to stick to the topic... I want to find opinions

 

[pattismith]

@pattismith thank you! Big hope! Now I'm back to the baseline and it's very hard for me. My sleep was ruined by the switch to antipsychotics - Sulpiride and then Quetiapin. But I don't want to distract this discussion with it ;-) I want to stick to the topic... I want to find opinions

I try to understand what happened to you, but it means looking at the changes you had in your medications.

You said you swtiched to Sulpiride and then to Quietapin, so I understand that your sleep deprivation started at that time, is it?
How long did you take Sulpiride and Quietapin?
Did you stop Benzo, Pregabaline and Tianeptine when you started taking Sulpiride then Quietapin?

 

[MartinK]

@pattismith about this medication I will write PM to you ;-) but they are certainly not what caused the improvement - improvement came after 14 days of sleep deprivation and I was without medication during those days because I was afraid to try anything else.

 

[MartinK]

This is what chat GPT says:

Hormonal and Neurochemical Changes: Sleep deprivation can lead to an increase in certain neurochemicals and hormones. For example, it might cause elevated levels of cortisol and adrenaline, which can temporarily increase energy levels. However, this is typically not sustainable and can lead to a crash.
Circadian Rhythm Reset: Extreme sleep deprivation can sometimes reset the body's circadian rhythms. This reset might help in conditions where the circadian rhythm is disrupted, potentially leading to temporary improvements in sleep-wake cycles and energy levels.
Immune System Modulation: Sleep deprivation can temporarily modulate the immune system. ME/CFS is thought to have an immune component, so changes in immune activity due to sleep deprivation could have led to temporary symptom relief.
Altered Brain Function: Sleep deprivation can alter brain function in various ways, potentially increasing neuroplasticity or altering neural pathways. This might lead to short-term improvements in certain symptoms, although the long-term effects are generally negative.
Psychological and Placebo Effects: The psychological impact of experiencing a change, even if it’s due to a stressful event like sleep deprivation, can sometimes lead to a temporary improvement in symptoms due to heightened mental alertness or a placebo effect.

 

[bad1080]

there was somebody else on here maybe 3-4 weeks ago who suspected either sleep deprivation or transcranial stimulation (iirc) to be a factor in their improvement. maybe i can find it again... here it is: https://forums.phoenixrising.me/thr...rom-very-severe-to-moderate-in-14-days.92017/ oh nvm it's from you

 

[MartinK]

@bad1080 yes, thats me, but now it seems that the improvement was caused by sleep deprivation, so I'm writing this post to stick to the topic.

 

[Viala]

I have noticed it a few times when I couldn't fall asleep and had maybe 2-3 hours of sleep only. It was not a remission, but a definite improvement for about a day. If I continued this I felt worse from not enough sleep.

There were also a few times when I woke up around 4am and I felt quite healthy and nothing like CFS, just to notice that within two hours my fatigue and pain came back. So definitely it is somehow related to our sleep, it feels as if our bodies are still asleep in some way. Melatonin can come into play here, also cortisol levels, reverse T3.

My circadian rhytm is very good now and I wake up early on my own, but this hasn't improved my energy levels. I sleep well since many months, so I don't think that fixing circadian rhytm would help by itself, something else plays a role here that affects our sleep/awake states, also sleep quality may still be off.

 

[MartinK]

Thank you @Viala !

Few people get benefits from short-term insomnia - this is now evident from the messages you have sent me.
The strange thing is that it took so long for me to see the effects...

I can think of trying to artificially increase cortisol and T3 as possible attempts. Blood tests come back normal but maybe worth a try. This could be the first step i could take...

And one more thing - please all of you, can you think of anyone in the scientific community who I could contact for opinion?

 

[Viala]

@MartinK I tried to increase my cortisol levels with licorice, bright light therapy and vitamin B5. I had more energy for a while but it wasn't a permanent fix for me and sleep deprivation increased my energy levels only sometimes. It all works a bit better in the early years of CFS I think, but I read that these solutions helped some people.

When you couldn't sleep did you stay in bed with eyes closed or watched tv? Using LED screens with a lot of blue spectrum at night can make a difference, light affects cortisol same as circadian rhytm. It's all connected at some level.

I am glad to hear that you are yet another person that reached remission, even if temporary, it means that this condition can be reversed, we only need to find out how.

 

[Wishful]

@MartinK , before you commit to something costly in the search for why 14 days of sleep deprivation triggered remission, keep in mind that you don't know for sure that the sleep deprivation was responsible. It could have resulted from a myriad of possibilities, and only coincided with the sleep deprivation. Maybe your body's response to going of that drug was responsible, with the sleep deprivation not involved. Without repeating the experience several times, you just don't know for sure. It's certainly a possibility, but not something to gamble something important on.

 

[lenora]

Hello Everyone.....I doubt that most people have suffered the sleep deprivation I have. Over 35 years or more, I'm talking. Before that, sleep was normal and I didn't have a complaint.

The deprivation started at about the same time as my syringomyelia and led to ME/FM. I do think FM played a large role in this.

My neurologist at the time, tried me on every single sleep drug available. One night was the average time they would work. I gave up taking sleep drugs (oh, after two visits to sleep clinics also) approximately 15 years ago. Why take a drug if it isn't going to work. The drugs included rohypnol....and that was the end of trying anything else. I'm on my own now.

Some nights I sleep....but it's usually for 3 nights max and then 3-4 nights awake. It's almost a pattern and there is not point in fighting it (in my case). Funny thing is that people tell me I look rested after I've had no sleep. I look worse on the days I sleep.

I'm 77 yrs. old now and I find it much much harder to manage without sleep. Life is a daze, even after a nap. No, I'm not bipolar.....I've had that checked out and it isn't the cause. That did concern me.

If someone can take something away from this, I'm glad. Oh, naturals like melatonin, valerian and the like make things even worse so they've joined the sleep drugs. I wouldn't be surprised if sleep is somehow involved in this b/c it's so pervasive with many of us. Glad you're doing fairly, Martin. Yours, Lenora

 

[JES]

Interesting observations. About cortisol, I usually feel best a couple of hours before sleep time and the worst in the mornings, which would go against increasing it in my case. Maybe the reverse problem for me then.

Regarding sleep deprivation, I had the same observation. I can still get improvement from it and the improvement extends to the next day, but not much further, perhaps because I haven't really dared to try it for several days in a row.

Regarding other "weird temporary hacks", I made a list of things that gave temporary improvement for me (post). The key here is temporary though, as unfortunately none of these work permanently any many like improvement from a cold cannot even be realistically anything other than temporary.

 

[vision blue]

If its not adrenaline, Maybe for same reason that some report feeling more normal if they have a cold or injure their foot - body now has more urgent things to do than its usual maintenance , something about which makes us sick (eg self attack)

Would be cool to do a metabolomic assesmment normally a d when sleep deprived Easy enough to do but will cost 300 for each assessment

Did you say you tried rapamycin? If you get a chance, can you comment on your experiences with that? What was your dose, how often did you take it and what were your reactions?

 

[MartinK]

@Wishful at first i thought tdcs might also have brought the improvement but firstly i repeated it with no effect and secondly i remember that the first waves of energy came a few days before i started tdcs then. And as for the meds - they were long gone from my body. That's why I try to keep searching.
Your improvement with T3 - are you hypothyroid or is it fine and you tried it anyway?

@lenora that's an insanely long time... I wish your sleep would improve, for example with some new type of medication like Dayvigo or Quiviviq.

@JES thanks for the insights! I also usually feel best in the evening. Unfortunately measuring cortisol is complicated :-/
My other interesting improvement for few hours was perhaps after a fever - probably something similar to yours. Apparently various "shocks" to the organism tend to return something to normal... I have to keep looking and trying.

@vision blue An interesting insight - yes, in short, it's as if strange "events" led the body out of the captured stereotype of the disease. In my case, sleep deprivation made a really massive effect. What is quite exceptional about it is that the improvement lasted for a long time... what has returned to normal I hope must be helped to return to normal by another process.

I did the metabolic assesmment only in a "normal" state - that is, with all the symptoms, when everything came out completely normal.

Rapamycin - only once 1mg and it caused really unpleasant effects, feeling inflamed, flu-like symptoms that lasted almost a month...it was terrible. Since then I've been afraid to experiment with immune suppression (yet it's pretty obvious that my sleep deprivation must have caused it too, but without these ill effects)

 

[Viala]

I often feel better in the evening too and I still benefited from licorice. It can be that cortisol levels in CFS are not normal and lower than they should be during the highest demand in the morning. My cortisol lab tests were fine, but tests aren't always a good indication of what's really going on in the body. There may be a functional deficiency.

It's one of possible explanations, it can also be that cortisol doesn't have much to do with it and it's some downstream effect, hence only temporary improvements.