Poisoned by sleep, please help

[JES]

Sleep deprivation and catching a cold/flu are the two best ways I can consistently reduce certain symptoms. Unfortunately I have not figured out a way to consistently sleep less without avoiding the tiredness side effect that OP mentioned, but something like polyphasic sleep could perhaps be the solution. A Russian project manager who employed this strategy has managed to sleep 4.5 hours a night for two years if we trust his words, so maybe this would be worth trialing.

 

[Hope78]

Unfortunately I also get this after an afternoon nap if it was longer than 30 minutes. That sucks :-(

 

[soxfan]

I am having this problem today. Felt as though I slept good...woke up a few times but right back to sleep. Got up my usual 7am like everyday. Within an hour I was hit with the weird fatigue where you feel sleepy and tired but not enough to actually sleep. My body does not feel physically tired but my brain does.

I don’t get this often and have no idea why but it’s probably the worse type of fatigue I have because it sticks around all day and makes me useless and uncomfortable.

I have rested a couple times without falling asleep and nothing relieves it. I guess I can only hope I don’t have it again tomorrow. I get totally debilitated with this type.

The less I sleep the more energy I have as well...I would rather have a bad night sleep than feel like this with a decent night sleep...

 

[Hope78]

I am having this problem today. Felt as though I slept good...woke up a few times but right back to sleep. Got up my usual 7am like everyday. Within an hour I was hit with the weird fatigue where you feel sleepy and tired but not enough to actually sleep. My body does not feel physically tired but my brain does.

I don’t get this often and have no idea why but it’s probably the worse type of fatigue I have because it sticks around all day and makes me useless and uncomfortable.

I have rested a couple times without falling asleep and nothing relieves it. I guess I can only hope I don’t have it again tomorrow. I get totally debilitated with this type.

The less I sleep the more energy I have as well...I would rather have a bad night sleep than feel like this with a decent night sleep...

Soxfan, I know exactly what you mean. It also leaves me completely useless the whole day until late in the night, when my system finally wakes up
I once took a monster dose melatonin and this felt somehow similiar. Maybe a mix between low cortisol and melatonin not being degraded fast enough? When the detox pathways are compromised (melatonin degradation needs acetylation, sulfation, and some more) I can imagine it lingers in the system much longer? Probably its much more complex, but maybe this is one piece of the jigsaw, how knows?

 

[soxfan]

@Hope78 ...yes it’s like my brain can’t wake up. Almost like I woke up at the wrong time when I was in the middle of a deep sleep cycle. I always get up the same time so have no idea why this happened today.
I can’t take melatonin at all...it makes me feel terrible the next day..even a tiny dose.

This is defiantly the worse type of fatigue for me. Most of the time I can fight through whatever fatigue I have and at least go out or get some things done. With this kind can’t function at all

 

[Hope78]

@Hope78 ...yes it’s like my brain can’t wake up. Almost like I woke up at the wrong time when I was in the middle of a deep sleep cycle. I always get up the same time so have no idea why this happened today.
I can’t take melatonin at all...it makes me feel terrible the next day..even a tiny dose.

This is defiantly the worse type of fatigue for me. Most of the time I can fight through whatever fatigue I have and at least go out or get some things done. With this kind can’t function at all

Same for me, cannot tolerate melatonin! Thats why I thought this might be involved.
Large doses of coffeine sometimes help, everything which gets my stress hormones going. Normally they are too high but on these days I think they are all low. Methylated folate along with b12 injections sometimes help too. But only to some extrend and not always. I also experimented with 10mg doses of hydrocortisone and sometimes noticed an improvement

 

[soxfan]

@Hope78 ...my doctor won’t give me hydrocortisone so I ordered some adrenal complex . I had a low “normal” blood cortisol at 8am which was 8.2 (range is 5-24) She said she would only give me Cortef if it had been 5.

I sometimes think it has to do with my sleep cycles but I don’t get this type of fatigue a lot...maybe once a month or so. I have no clue...as to why I sometimes have it.

 

[jesse's mom]

The best medication i have used is Halcion it has a 5 hour half life and sometimes i sleep and dream if I am able to sleep 7 to 9 hours. I cannot nap either.
Trazadone left me feeling groggy all day.
I take lyrica for pain, it does make me tired, but pain is exhausting.
Best of luck to you, gentle hug.

 

[alldayeveryday]

Omg I have exactly the same thing going on!
I did a post on this today in the sleep forum.
After 7-9 hours of sleep I feel so drugged up the whole day, its a nightmare. I function better with 5 hours of sleep, but am too wired to nap then.
What the *#&§* is going on here? Never ever had this before!

I honestly have no clue but getting those 7-9 hours really does absolutely destroy me. I am so sorry your going through that as well although I am partly relieved that at least someone can relate in some way, it is by far my most baffling and devastating symptom. When I sleep less and my mind actually works and has some clarity I almost stop believing how bad it can be, especially when the sleep deprivation mounts and I want sleep. Then I wake up and find out what real true exhaustion and brain fog is. At this point I'm just focused on seeing how far I can push the get sleep envelope without being devastated envelope. I can get 5 and a half and not be utterly devastated but around 6 things get really thorny. What really sucks is it's a binary switch, if I fuck up and get 6 hours and it's deeper then usual and I feel awful I'm feeling awful for the whole day, rarely do stimulants work. I'd love to see if I could get some kind of bimodal sleep thing going but while I feel 70% better with less sleep, I to am too wired all day to nap, even when sleep deprived as all hell. That wired but tired feeling is a weird thing in and of itself but it's just miles better then the exhausted zombie I become with sleep.

There is something going on that makes sleep so bad for us, when I got the fog and was able to make it go away for an hour or two with ritalin and coffee I could literally feel the energy leave my body as the effect wore off and in particular my hands got cold, it felt like something was going on with my circulation. I'm wondering if it could be some form of POTS that's being aggravated by laying down for a longer period or something immune related wherby sleep deprivation makes our bodies to tired to attack themselves but honestly, I just don't know. All I know is the juxtaposition between how I feel with and without adequate/quality sleep is so large it's almost comical.

Please let me know if you find anything that seems to help you or is a clue, it seems like CFS is heterogeneous enough that it's hard to find things that help a large subset of people. However, it seems that at least you and I and some other people on this forum experience this particular set of symptoms in a similar manner so perhaps something that would help one of us would help others. Even finding some way to sleep just a bit more without being poisoned would probably be beneficial in the long run, I'll do the same.

 

[alldayeveryday]

Sleep deprivation and catching a cold/flu are the two best ways I can consistently reduce certain symptoms. Unfortunately I have not figured out a way to consistently sleep less without avoiding the tiredness side effect that OP mentioned, but something like polyphasic sleep could perhaps be the solution. A Russian project manager who employed this strategy has managed to sleep 4.5 hours a night for two years if we trust his words, so maybe this would be worth trialing.

Funnily enough I seem to get classically sick far less frequently since I started developing ME/CFS symptoms but I did get a pretty high fever somewhat randomly about a year ago and remember feeling far better literally burning up energy wise then I do on my typical non sleep deprived night. I've seriously thought about getting myself a cold/flu to get better but am reminded of all the people who seem to get worse after getting sick so I don't think it's worth the risk.

Have you found anything that has modulated the risk/reward ratio of amount of sleep/level of disfunction you experience? For example, I think the 20mg of amitriptyline(do not have the means to validate this again) that I take has allowed me to sleep 5:30, sometimes up to 6 hours without getting 'poisoned', while before I could only sleep up to like 5 and have that assurance. It's a tiny thing but any extra sleep I can get does fend off the worst of the sleep deprivation for at least a little longer.

 

[PatJ]

wired but tired feeling

Have you seen Hip's thread listing Wired-but-tired remedies?

 

[JES]

Have you found anything that has modulated the risk/reward ratio of amount of sleep/level of disfunction you experience? For example, I think the 20mg of amitriptyline(do not have the means to validate this again) that I take has allowed me to sleep 5:30, sometimes up to 6 hours without getting 'poisoned', while before I could only sleep up to like 5 and have that assurance. It's a tiny thing but any extra sleep I can get does fend off the worst of the sleep deprivation for at least a little longer.

I have not experimented much with less sleep yet, as I always thought sleep was essential in this disease and because I noticed when I get past the 8-9 hours mark, I always feel like wanting to continue sleeping for a few hours longer. But it has now become clear to me that sleeping (especially if 10+ hours) absolutely affects me negatively. A night ago I was forced to only sleep 4 hours and I felt great the same evening after overcoming the initial tiredness. It feels almost like this cell-danger response that Dr. Naviaux talks about kicks in stronger the more I sleep, making me feel sicker in many different ways (I wonder if suramin would help me...). I also feel that blood flow to my extremeties and POTS symptoms get worse the more I sleep.

Next few weeks I decided to experiment with changing my sleeping schedule. Even five hours per night should be doable, especially with a biphasic sleeping rhythm, which would involve a nap of around 90 minutes seven hours after waking up. It also seems that meditation would allow less sleep. I think the body is way more adaptible than most of us think and that many people would do well on different sleeping schedule with a little bit of experimentation. It became socially the norm to sleep 7-8 hours in one pass, but there isn't much evidence that our ancestors and genetics were optimally tuned for this kind of sleeping rhythm.

 

[perrier]

I've found a Genova Diagnostics NutrEval to be most useful in customizing a program.

Thorne MethylGuard is a good product, as are MethylGuard Plus, Neurochondria, and 5-MTHF. There are similar high quality products from Seeking Health and Designs for Health. 5-MTHF is the form that your body uses, you don't have to convert from the other forms, so it's easier for most people's bodies to use.

If you start down the path of folate and B12 supplementation, be aware that you may also need more magnesium, molybdenum, B6, B2, B1, amino acids, and possibly TMG, potassium, and methionine. How much you need of each will depends on your genetic and environmental factors. A functional medicine doctor could be extremely helpful, but you can learn a lot these days on the internet (though the quality of info varies).

As for dosage, you'll have to work out a plan customized to you, rather than following some recipe for someone else. It's best to start with a balanced approach and gradually increase/adjust doses.

Some people can tolerate only the tiniest amounts, while others of us need massive amounts. For example, I recently learned that though I'm taking 250mg B2 (riboflavin) a day, I'm still severely deficient, even with 19,000% of the "daily value" for normal people, which is not a good idea as its essential to making ATP, our body's energy currency. (It's also one of the deficiencies noted in the metabolomics study, so not too surprising.)

Best wishes...

Dear Learner
WE have the Nutreval kit here but haven't done the blood draws. I looked at a sample result on their website. It looked rather standard, in the sense that minerals levels were measured, etc. CFS patients who go to CFS doctors often have nutritional tests done. So, we have a ton of all kinds of testing which hasn't led to anything.

Please indicate how you found this test useful. Perhaps the sample result just isn't indicating how useful the test
can be. Are there others here who have found this testing at nutreval useful. Thanks

 

[JES]

Can we keep this thread on topic, i.e. effects from modulating sleep?

 

[Learner1]

Dear Learner
WE have the Nutreval kit here but haven't done the blood draws. I looked at a sample result on their website. It looked rather standard, in the sense that minerals levels were measured, etc. CFS patients who go to CFS doctors often have nutritional tests done. So, we have a ton of all kinds of testing which hasn't led to anything.

Please indicate how you found this test useful. Perhaps the sample result just isn't indicating how useful the test
can be. Are there others here who have found this testing at nutreval useful. Thanks

The NutrEval has been extremely useful. It has shed light on the damage done by my infections and how better to support my biochemistry to help my body do its job better.

And, @JES it has been helpful in pointing out deficiencies and imbalances that affect sleep.

 

[JES]

@Learner1 Sure, I don't doubt deficiencies affects sleep. My point was that this thread is about the paradoxical effect that thread starter explained, which I can perfectly understand as I have the same issue, i.e., the less we sleep, the better, up to a certain point. Anything more than six hours of sleep (in one pass) will produce worsening of CFS symptoms the following day. I have had contact with at least 3 or 4 people on PR with the same issue. I don't have any issues with sleep disturbance, in fact I would love to sleep 9 hours a night, but it has become clear to me that it has a paradoxical, detrimental effect for me. That's why I was suggesting we keep this thread on topic of the headline and discuss general sleep problems elsewhere.

 

[Hope78]

Ok, so I did a bit of research and I think (at least for me) I know (or I partly know) where this horrible feeling after a full night of sleep comes from.

We all know what often occurs in CFS is a downregulation of the hpa axis. That means the hypothalamus/pituitary system and the adrenals underresponds to stress. Thats most often a consequence of inflammation and stress activating the hpa axis and then, in order to protect the body from too much stress hormones, the axis gets downregulated.

When it comes to sleep there are several thinks known:
- sleep deprivation activates the hpa axis and people who are sleep deprived have higer levels of cortisol in their system
- the longer the sleep, the lower the level of cortisol.

Well, so even healthy people have this feature. With the difference they dont have a down regulated hpa axis. So I assume what happens for some of us CFS people is:
- sleeping less activates the stress system, more ACTH from the pituitary, more cortisol, feeling better!
- sleeping enough quites the already too downregulated hpa axis. In consequence the already low cortisol gets even lower!

PLUS: most people have a problem with detox. To degrade melatonine you have to have your detox pathways functioning.

AND: Cortisol is the natural counterpart of melatonine.

So imagine what might me the case if your melatonine stays too long in your system because your detox pathways are compromised & at the same time the substance that supresses melatonine (cortisol) is very low. What you feel then is a very bad hangover because your brain is still half asleep.

I am pretty sure for me this scnecario is true. Unfortunately I dont know what to do battle that. I have constant inflammation going on, that puts an extra burden on the functioning of my hpa axis.

Curious what you guys will think about this. Sry for my ENglish!

 

[PatJ]

I am pretty sure for me this scnecario is true.

That's something that might be testable with at-home saliva cortisol tests. Test one: get a normal night of sleep where you feel terrible, then test your cortisol for that day. Test two: get a shallow night of sleep where you feel decent and do another day of cortisol tests. Then send the tests to a lab and see if the results match your research.

 

[Hope78]

That's something that might be testable with at-home saliva cortisol tests. Test one: get a normal night of sleep where you feel terrible, then test your cortisol for that day. Test two: get a shallow night of sleep where you feel decent and do another day of cortisol tests. Then send the tests to a lab and see if the results match your research.

Thats exactly what I intend to do, just waiting for good test days. I will also test the catecholamine levels.

 

[Seven7]

it’s like my brain can’t wake up. A

That for me is when brain is inflamed. I have to lower any new meds. Any new teas or food. If I cannot find the culprit, then antimflamtories do the trick ( advil, Celebrex....)