Waking up feeling like I've crashed [PEM] in my sleep?

[RyeRyeBread]

I've been waking up [from naps and general overnight sleeping] feeling like I've crashed in my sleep, and been a little caught off guard because I didn't think I was going to- Anyone else?

When I crash/have a PEM episode,
I usually have a whole handful of symptoms that occur, as somewhat of a "tell" if you will.
I start off feeling really, really tired out of seemingly nowhere, I may have a migraine [with noise, motion, and light sensitivity], I feel horrible brain fog, often have a low-grade fever and feel feverish and have malaise, and this weird "fuzzy/hazy" feeling, physically, and mentally. This feeling is kind of what it feels like to wake up when your feverish - groggy, fuzzy, out of it, with brain fog and overall crappy feels galore. It's both mentally and physically present (i would guess my brain is doing something buggy during these), and is just overall disorienting. I've had it everytime I crash, both during, and then just as I'm getting out of one (usually when i wake up because I try [hah, or have no choice but] to sleep through them - but I have had this feeling regardless of if I've slept through the crash or not)

Lately, I've taken naps or gone to sleep for the night (unaware of how much i must have exerted myself) and woken up with this same feeling; feeling like I've awoken from a crash...

Has anyone else had this experience, or something similar?

Tbh it's a little spooky for me, as usually I can rely on my "tells" so I have an hour or so to prepare for the worst of the crash, but to fall asleep feeling okay, and waking up and having crashed.. ugh

 

[Wishful]

I suppose it's not impossible for the cognitive activities of the sleep state to trigger PEM. I suppose the sleep state could also interfere with neurological functions in a way that exacerbates your symptoms. It sounds unpleasant, and difficult to try to treat. It's easy to give up troublesome foods, but not easy to give up sleep or even change sleep.

 

[Nord Wolf]

Has anyone else had this experience, or something similar?

I get this a lot. For me it has to do with ptsd that runs in my sleep, bringing up night terrors and memories of severe experiences that created trauma. The more intense the nocturnal episodes, the more severe the PEM crashes afterward. Even though I am sleeping, during those episodes my mind isn't resting, and therefore my body is on high alert. The entire nervous system is locked in the re-experiencing of the traumatic experiences of long ago = crash.
So under these circumstances it absolutely causes PEM.
You didn't mention night terrors, nightmares or any other nocturnal disturbance (or sleep disturbance if day napping), so this may not be the case with your issue...

 

[Wishful]

You didn't mention night terrors, nightmares or any other nocturnal disturbance

Is it not possible for people to have such stressful dreams but not remember having them? Besides, it needn't be something scary. Simply chatting with friends was enough to trigger my cognitively-induced PEM, so dreaming about chatting might be enough to do it. Even a dream of driving, or house chores or whatever might do it.

 

[RyeRyeBread]

I haven't recalled having any specifcally tiring dreams whenever this occurs, but from now on I'm going to make note of that, and pay a bit more attention to what dreams I may or may not be having, it's definitely an interesting theory. I definitely have trauma that could manifest that way, as well as just general cognitive-exertion-based PEM that may be occuring due to dream-based brain activity... Definitely weird and fascinating.
(Though, i believe for me personally, it might be less likely to be dream related, since this hasn't happened the entire duration of my ME, and I've had bad dreams before that didn't trigger PEM. But who knows )

I guess it comes down to deciphering if these sleep-crashes happen due to activity during sleep, or before sleep.

 

[Nord Wolf]

Is it not possible for people to have such stressful dreams but not remember having them? Besides, it needn't be something scary. Simply chatting with friends was enough to trigger my cognitively-induced PEM, so dreaming about chatting might be enough to do it. Even a dream of driving, or house chores or whatever might do it.

I would certainly agree. I feel any nighttime (or sleep time) brain activity that causes enough body stimulation/activity could induce PEM. Some people are naturally more "active" during sleep then others. Anytime they dream (even if not recollected during wakening), their body is doing more "work" than other sleepers.

I guess it comes down to deciphering if these sleep-crashes happen due to activity during sleep, or before sleep.

Sounds like smart detective work Just don't wear yourself out detecting

 

[Judee]

It sounds like Rolling PEM.

From this Healthrising article:

Rolling PEM is when you don’t recover fully after each day or crash, and the PEM accumulates gradually over time. This accumulation of PEM means you get progressively worse over months or years as you fail to recover completely from each incidence of overactivity. This was the key for me and made me hopeful that perhaps I could get back to mild severity if I stepped up my HR pacing game.

I think it applies to some of us who are approaching severe. It might be why you are experiencing this.

Monitor your heart rate. Check it even before you get out of bed. It might give you a clue as to why you are crashing even before getting up.

You can estimate your anaerobic threshold (AT) using this formula:
(220 - your age) * 0.6 = AT, in beats per min (or use 0.5 if you feel like you are in the severe ME category.)

Sue Jackson said, "Even lying down (what's known as resting heart rate), my heart rate rarely went below 90." She talks about that on her website HERE.

I am finding the same thing with my heart rate

This thread also talks about it: https://forums.phoenixrising.me/thr...y-finally-spring-for-an-hr-hrv-monitor.83152/

 

[wabi-sabi]

Lately, I've taken naps or gone to sleep for the night (unaware of how much i must have exerted myself) and woken up with this same feeling; feeling like I've awoken from a crash...

I think it's the "unaware of how much I must have exerted myself" that is key. This sounds like a delayed crash to me. I can go to bed feeling good after a busy ( for me) day and know I will feel horrible the next day because I did too much when I felt OK the day before. Moral of the story- feeling OK doesn't mean you actually are.

Feeling good is my worst tell.

 

[RyeRyeBread]

It sounds like Rolling PEM.

From this Healthrising article:

Rolling PEM is when you don’t recover fully after each day or crash, and the PEM accumulates gradually over time. This accumulation of PEM means you get progressively worse over months or years as you fail to recover completely from each incidence of overactivity. This was the key for me and made me hopeful that perhaps I could get back to mild severity if I stepped up my HR pacing game.

I think it applies to some of us who are approaching severe. It might be why you are experiencing this.

Monitor your heart rate. Check it even before you get out of bed. It might give you a clue as to why you are crashing even before getting up.

You can estimate your anaerobic threshold (AT) using this formula:
(220 - your age) * 0.6 = AT, in beats per min (or use 0.5 if you feel like you are in the severe ME category.

Sue Jackson said, "Even lying down (what's known as resting heart rate), my heart rate rarely went below 90." She talks about that on her website HERE.

I am finding the same thing with my heart rate

This thread also talks about it: https://forums.phoenixrising.me/thr...y-finally-spring-for-an-hr-hrv-monitor.83152/

Probably yeah, would make sense smh

I was monitoring my heart rate actively, prior to my POTS diagnosis. Now I'm on beta blockers, so my heart rate that was usually 110-170+, is now almost always under 100, staying around 80-90 most of the day.... so now, I don't really know how it works

I was prioritizing staying under 110-115ish before, because that's when I started feeling my pots symptoms (which i believe exasperate my ME). So during an activity, if it reached 110, I'd sit, rest, and take it slower or stop completely for a bit.

But now, idk where that is, or how to monitor it now that meds are keeping it relatively stable :[

 

[RyeRyeBread]

I think it's the "unaware of how much I must have exerted myself" that is key. This sounds like a delayed crash to me. I can go to bed feeling good after a busy ( for me) day and know I will feel horrible the next day because I did too much when I felt OK the day before. Moral of the story- feeling OK doesn't mean you actually are.

Feeling good is my worst tell.

Very true, smh I guess I tricked myself into thinking i was more aware of my energy levels & over-exertion than I've actually been

Every time it's happened I've been shocked, genuinely, because most of the time I've been able to detect my crashes early, or at the very least guessed they were coming. Smh another painful reminder that we can't always trust these meat sacks we reside in

 

[Judee]

I'm guessing you might need to go lower on the target max unfortunately, say maybe 95 or 100 at most, i.e. stop sooner and rest.

Frustrating, I know.

 

[Wishful]

Some people are naturally more "active" during sleep then others.

I hadn't thought of that. It could be physical exertion during sleep. There must be some reasonably convenient way to measure movement or heart rate overnight.

 

[wabi-sabi]

It could be physical exertion during sleep.

And since most of us sleep badly, we aren't getting good quality rest.

 

[wabi-sabi]

staying around 80-90 most of the day.... so now, I don't really know how it works

Here's a thought if you want to try heartrate pacing. One way: find your lowest resting heartrate when you aren't in a crash. Use that as a baseline and then stay within 15 beats per minute of it. So if you're walking around with a HR of 90, but when you lie down and rest it's 60, then 75 is what you want to aim for to keep from crashing.

Or: just experiment to see what HR you need to stay under to prevent a crash. You already know that 90 is too high, so you're off to a good start! This may be annoying and time consuming at first, but helpful in the long run.

 

[RyeRyeBread]

Here's a thought if you want to try heartrate pacing. One way: find your lowest resting heartrate when you aren't in a crash. Use that as a baseline and then stay within 15 beats per minute of it. So if you're walking around with a HR of 90, but when you lie down and rest it's 60, then 75 is what you want to aim for to keep from crashing.

Or: just experiment to see what HR you need to stay under to prevent a crash. You already know that 90 is too high, so you're off to a good start! This may be annoying and time consuming at first, but helpful in the long run.

Thank you! Yeah, looks like i gotta take a step back recalibrate my HR bearings lmao
I had it down to a T before medication smh
hopefully I can get back to that level of understanding

I've worn a samsung watch with hr tracking from sun up to sun down since onset, so hopefully the recorded data over the past few weeks will assist me in there

 

[Judee]

Also I just thought of something else, @RyeRyeBread do you (or back when you posted this, did you) roll over in your sleep? I just ask because when I was on a whole bunch of hormones (2 kinds of thyroid, dhea) plus an iodide supplement, I used to get something I called my, "spiral down" anytime I rolled onto my right side.

It almost felt like doing so was causing me to start to black out or something. For almost a year and a half probably, I could not lay on my right side without this happening. So during that time, I could only lay on my left side or back.

Blessedly, I noticed it was one of the things that resolved unexpectedly when I weaned off of those meds/supplements but I do wonder if I had rolled over in my sleep (I don't tend to do that) during that time, if that would have caused me to crash during my sleep like you described.

???

Anyway, just a thought.

 

[Nord Wolf]

Also I just thought of something else, @RyeRyeBread do you (or back when you posted this, did you) roll over in your sleep? I just ask because when I was on a whole bunch of hormones (2 kinds of thyroid, dhea) plus an iodide supplement, I used to get something I called my, "spiral down" anytime I rolled onto my right side.

It almost felt like doing so was causing me to start to black out or something. For almost a year and a half probably, I could not lay on my right side without this happening. So during that time, I could only lay on my left side or back.

Blessedly, I noticed it was one of the things that resolved unexpectedly when I weaned off of those meds/supplements but I do wonder if I had rolled over in my sleep (I don't tend to do that) during that time, if that would have caused me to crash during my sleep like you described.

You may already be aware of this, but I never like to assume.

The liver sits on the right side of our body. All medications, herbs, foods, toxins, etc that we ingest, inhale or absorb into our systems gets processed by the liver. The liver does its most work (house cleaning) between 1 and 3 am. That is the time our liver is under the most duress from its labor. If we sleep on our right side during those hours, it can heat the liver up too much, making its work even harder. This causes the organ to produce stress hormones that flood our circulatory system. In turn, that can cause many sleep issues and, in my experience, even PEM.

Perhaps the hormone type medications you were taking couldn’t be properly processed by your liver?