PEM yourself to sleep (simple technique to get to sleep when your brain is too wired)

[Sundancer]

I agree.





That is actually true and in MCAS, exercise or exertion is a trigger of histamine for many people and can trigger an allergic reaction/episode.

would that someone ( a doctor????) would have told me that 6 years ago, would have suffered a lot less and a lot less damage to my body too)

 

[Gingergrrl]

would that someone ( a doctor????) would have told me that 6 years ago, would have suffered a lot less and a lot less damage to my body too)

Here is a list from TMS (the Mastocytosis Society) of potential triggers. I highlighted "exercise" so you could see it on the list. One of the major triggers not on the list for me is artificial dyes found in many foods and meds, especially Yellow #5 or Tartrazine. But exercise is a huge mast cell trigger for many people. This is the link: https://tmsforacure.org/symptoms/symptoms-and-triggers-of-mast-cell-activation/

Figure 1. Some Potential Mast Cell Triggers

• Heat, cold or sudden temperature changes
• Stress: emotional, physical, including pain, or environmental (i.e., weather changes, pollution, pollen, pet dander, etc.)
• Exercise
• Fatigue
• Food or beverages, including alcohol
• Drugs (opioids, NSAIDs, antibiotics and some local anesthetics) and contrast dyes
• Natural odors, chemical odors, perfumes and scents
• Venoms (bee, wasp, mixed vespids, spiders, fire ants, jelly fish, snakes, biting insects, such as flies, mosquitos and fleas, etc.)
• Infections (viral, bacterial or fungal)
• Mechanical irritation, friction, vibration
• Sun/sunlight

 

[Sundancer]

Here is a list from TMS (the Mastocytosis Society) of potential triggers. I highlighted "exercise" so you could see it on the list. One of the major triggers not on the list for me is artificial dyes found in many foods and meds, especially Yellow #5 or Tartrazine. But exercise is a huge mast cell trigger for many people. This is the link: https://tmsforacure.org/symptoms/symptoms-and-triggers-of-mast-cell-activation/

Thank you, I'll print that. It is more elaborate then from the dutch counterpart.

I have tested tryptase and that was allright


next I'll start to study what to do to get this better....
Last week I read a paper that mentioned nitrosative stress as one of the culprits. So i quickly started back with the supplement I take that lowers this.

Could you point me to a starters what are causes for this and what can be done in the food/natural supplements department?

I've been on a verylow histamine diet for years now, lately I found that when taking the antihistaminicum I can handle small amounts of cheese/chocolate ( nomnomnom) but not too much of course .

Just had a flare up, last 2 nights hardly any sleep. But learned something and now for seeing how to find a better balance as liver has problems with the prescription medication I now take.

endless circles in circles. But the combi of hydroxy injections and low dose antihistamincum does work wonders for me.

( eating too much cheese and chocolate was the culprit that threw me back in the pit of pain/sleeplessness/brainfog, now climbing out again)

 

[leokitten]

@Hip do you believe the nightly wired and related symptoms are due to glutamate overactivation and not something else plausible like lactic acid buildup in the brain?

Have you experimented with any NMDA receptor antagonists to test this hypothesis?

I’ve been taking memantine and tiagabine (not an NMDA antagonist but GABA reuptake inhibitor) on and off for years and they seem to have a limited effect on this crushing symptom.

It could be that the activation in ME is strong enough I would need something stronger, though I’m wondering if it really is due to something else.

 

[Gingergrrl]

Could you point me to a starters what are causes for this and what can be done in the food/natural supplements department?

@Sundancer I am happy to help if I can but don't want to take this thread off track (which is my specialty ). Can you let me know via PM if you have specific questions re: MCAS? I am a little behind on PM's but I always reply. So many people went above and beyond to help me when I was acutely ill and I want to do everything I can to pay it forward. The TMS website is a good resource and let me know what you are looking for via PM so I don't take Hip's thread off track.

 

[Sundancer]

@Sundancer I am happy to help if I can but don't want to take this thread off track (which is my specialty ). Can you let me know via PM if you have specific questions re: MCAS? I am a little behind on PM's but I always reply. So many people went above and beyond to help me when I was acutely ill and I want to do everything I can to pay it forward. The TMS website is a good resource and let me know what you are looking for via PM so I don't take Hip's thread off track.

I'll first recover from my cheese and chocolate feast... till feeling bad and brainfoggy
then start looking for the first outlines, then the questions will arise. Thanks, when I have those questions you'll find a PM from me

 

[Hip]

@Hip do you believe the nightly wired and related symptoms are due to glutamate overactivation and not something else plausible like lactic acid buildup in the brain?

It's possible that the wired overstimulated symptoms of ME/CFS are glutamate-related, given that activated microglia pump out a lot of glutamate, and that glutamate is an excitatory neurotransmitter. But of course that's just a guess, it could be due to something else.

But on that assumption, I suggested some treatments in this thread which might reduce glutamate and thus hopefully the wired symptoms.


Lactic acid interestingly enough might be used as an energy source for neurons in the brain, although I don't think this is yet proven. Ref: 1

 

[Rebeccare]

I've used a similar strategy, but instead of getting up and doing squats, I stay in bed and do the bicycle thing:

For me that works partly because my legs get restless, so this kind of exercise helps to tire them out without tiring out the rest of me!

 

[taniaaust1]

What I find tends to trigger more fatigue and brain fog than you might expect is any activity that involves crouching down for a while, then standing up, and doing this repetitively. Like for example cleaning the bottom of your cupboards. I think that's because with POTS, my body cannot adjust blood flow properly when standing up after being crouched down for some time.

It's possible I guess that some of the tiredness that comes on after I do the squats is POTS-related (rather than just muscle fatigue-related). But in any case, when I am trying to get to sleep, in those circumstances that tiredness is welcome and useful.

I have trouble just getting up on the floor and often have to actually pull myself up using something to stand. So I can not imagine trying squats.....

I'd like to say that I calling "tiredness" or fatigue - malaise is probably not at all good and will further confuse those who do not undertand ME if they read this post. Muscle tiredness IS NOT malaise (so the term PEM yourself to sleep should not be used for this). Here is a definition of what Malaise is (with this exercise use simple muscle fatigue to get you to sleep, you are not relying on feeling not right, discomfort or illness (this is malaise) to get yourself to sleep.

Dictionary result for malaise

/

1. a general feeling of discomfort, illness, or unease whose exact cause is difficult to identify.

..............

if I do anything at all active (high intensity of anything) I just stimulate my brain more, even more wired. I think I can explain why this occurs .... I have too much adrenaline coursing through my body to start with (according to lab test results) so anything which produces more, not so good for sleep. (I dont calm down from adrenaline easily either, much slower than a normal person. I can take 2-3hrs to calm down from an adrenaline rush). I know my body does not respond to exercise in healthy persons ways.

Here is some scientific info on adrenaline.

Epinephrine, or adrenaline, is a hormone secreted by the adrenal glands. Part of the body's 'fight or flight' response, adrenaline is released during periods of stress on the body. It plays a role in exercise physiology and even the thought of exercise may stimulate an adrenaline rush. Mar 24, 2017

that quote above was not based on ME/CFS stuff but on a normal physiology of a human body.. just "the thought" of exercise is capable of causing an adrenaline rush.

 

[percyval577]

@taniaaust1 is utterly right, I would say.

PEM can hinder sleep.
Sleeping is a (special) kind of doing, and when you have PEM you cannot do.

This is also a generel misconception on our illness: that the ill people would rest so much.
The opposite is true, with this illness you have difficulties to rest properly (therefore I "rest" so much).

 

[taniaaust1]

When I was able to exercise, I'd like to also add that I found that doing leg exercises before bed caused restless leg syndrome at night .. so that also hindered sleep. I dont know if that was due to extra blood pooling into the legs due to standing to do exercises or not.

 

[taniaaust1]

Yes, that's what I do myself for exercise, a stroll down my road.

But the technique detailed here is not really for exercise purposes, but to help get to sleep. And I think this technique will probably only work if you do it just before you get into bed.

It is fairly well known in "healthy people" that adding "some exercise" in their day (not necessarily right before bed) can help with insomina. So I guess those who only have ME/CFS mildly may well find it the same.

 

[taniaaust1]

Sit-up might then be a better substitute, though the amount of exercise performed would have to be figured out carefully; you would not want to do so much that you cause PEM the next day.

For some patients it may be that for example just 90 seconds worth of sits-ups as you get into bed may reduce the "wired" state enough to help sleep; but doing more than that may lead to PEM. That's assuming this technique does work for other ME/CFS patients.

Your post made me curious if I could even do a sit up (to sit up in bed due to weakness I roll over to my side and then use my hand to sit up). Any way the result of trying to do just ONE SIT UP was.. sure enough a complete fail.

I cannot even do a half sit up with my legs bend or straight. I can get my head up okay and just barely my shoulders off of what they are touching and doing that just once just gave me bad head spins which Im now waiting to settle down.

edit. I should not have tried that cause I just remembered when I tried sits ups years ago (a physios suggestion to try to strengthen me who supposely saw others with ME/CFS) during her session with her, I actually injured myself trying and it was like I actually tore a muscle on my first attempt to do one. I was left in a lot of pain.

It's interesting that I was stronger back then though I hurt myself but cant do so now (and that physio session had been after many months of being totally mostly bedbound so my ME/CFS was worst). Im shocked to find out just how weak I am now.

 

[percyval577]

So I guess those who only have ME/CFS mildly may well find it the same.

I might be allowed to assume for now that all feelings of our illness are generated in the brain.
It´s at least not completly true (because the intestinal issues are an own act, at least to some extent).


Then the question is, how manny of your nerves are affected by exercise.
If not too much you can pace, and squats asf. might be helpful for falling asleep.
Such an exercise might even help to distract some bad-actions from other regions in the brain.

But if an exercise goes more completly around in the brain, it will not be possible anymore.


Principially I like to think:
We get exhausted, but we get not tired.

 

[valentinelynx]

This "PEM yourself to sleep" technique involves doing a very short burst of intense exercise

LOL! My dog invented this... It looks for all the world like she does this deliberately—When she's ready to lie down and chill, she tears around the room, spins in circles and digs like mad for a minute or two, then, panting, she lies down and is asleep within seconds!

 

[Hip]

Im shocked to find out just how weak I am now.

Sorry to hear that you are weak at the moment. I hope you can find drug or supplement that might make improvements.