Brainstorming Brain Fog PEM Shielders

[hapl808]

Any thoughts beyond the PEM thread for specifically cognitively induced brain fog crashes?

For me, computer work, phone calls, videochats, etc - all lead to awful multi-day crashes. I tried videogames a few times and the crash would start about five minutes in. I can't seem to figure out how to even moderate it other than to just do nothing which is insanely boring and frustrating.

Things I've tried to some degree (although always wonder about dosage): meditation, Chinese skullcap, cumin, Q10, creatine, huperzine, Valium, Cialis, citicoline, Alpha GPC, fish oil, allicin, propranolol, ketotifen, cromolyn, quercetin, curcumin, magnesium (glycinate, malate, threonate), BCAA, ALCAR, baking soda, probiotics, D-Ribose, passion flower, and so forth.

Caffeine helps slightly to relieve the crash, as does ibuprofen (although I try to avoid any regular use). Can't figure out if anything helps shield it.

The headache and brain fog is maybe the worst. Feels like just a constant heat stroke headache that lasts for days, usually with elevated diastolic (85-90) and that wonderful poisoned feeling.

 

[wabi-sabi]

I'd love an answer to this myself. Can't say anything has worked for me except resting and waiting until it passes.

 

[hapl808]

I'd love an answer to this myself. Can't say anything has worked for me except resting and waiting until it passes.

I also have wondered about dopamine connections. Would make sense with some of the gut involvement (and my onset was likely GI problems after enterovirus). But hard to differentiate from things like norepinephrine.

Also some incidence of Parkinson's in my family, although mostly 30 years older than I am.

 

[Wishful]

FWIW, when I had PEM, cumin blocked my physically-induced PEM 100%, but didn't block my cognitively-induced PEM, so those seem to be two different mechanisms. However, when cumin's effect became permanent, I no longer suffered from cognitively-induced PEM either.

When you're considering experiments, look for chemicals that easily cross the BBB. I believe glial cells are involved, so chemicals known to affect those cells would top my list.

Fisetin seemed to give me a slight but noticeable reduction in brainfog, but it stopped working after a few weeks.

 

[hapl808]

Fisetin seemed to give me a slight but noticeable reduction in brainfog, but it stopped working after a few weeks.

Vaguely remember fisetin having a similar effect - have to revisit my notes. I think for me it reduced some brain fog rather than shielded against the worse crash brain fog. I always have a high level of brain fog now - just gets worse during crashes. But I recall fisetin effects diminishing within days not weeks, but again have to revisit my notes because I don't really remember.

 

[lyran]

LDN is the only thing (that I have found) that works for me, so in my case PEM is usually connected to low endorphin levels. Oregano oil softgels also help sometimes when I have that fatigued, angry, itchy, clogged feeling because it lowers inflammation and is an antihistamine.

 

[Consul]

IIRC Cort Johnson wrote that Tylenol helps his PEM.

 

[hapl808]

LDN is the only thing (that I have found) that works for me, so in my case PEM is usually connected to low endorphin levels. Oregano oil softgels also help sometimes when I have that fatigued, angry, itchy, clogged feeling because it lowers inflammation and is an antihistamine.

I have to revisit LDN. Nonexistent endorphins were one of the first things beyond GI issues I noticed after my viral onset (25 years ago), so when I heard about LDN only 5 years ago, I was excited to try it. Just didn't notice much other than vivid dreams - tried from 1.5mg to 4.5mg. But I want to try it again as I think I track my symptoms better now. Even 5 years ago I thought some things must be food triggers because cognitive exertion triggers just didn't make much sense to me.

 

[Wishful]

I started taking LDN again, due to my muscle aches returning recently. It does block those neuropathic aches, but the amazing thing is how much that pain had reduced my willingness to go for walks. Without LDN, 600 m (albeit rough terrain) and I gave up and headed back home. With LDN, the last few mornings I've gone for multi-hour hikes through the tundra (very tiring terrain to hike through). It doesn't affect any other ME symptoms though.

 

[hapl808]

I started taking LDN again, due to my muscle aches returning recently. It does block those neuropathic aches, but the amazing thing is how much that pain had reduced my willingness to go for walks. Without LDN, 600 m (albeit rough terrain) and I gave up and headed back home. With LDN, the last few mornings I've gone for multi-hour hikes through the tundra (very tiring terrain to hike through). It doesn't affect any other ME symptoms though.

Interesting. I lost the ability to walk unaided many years ago, so any improvement there would be welcome.

 

[Rufous McKinney]

With LDN, the last few mornings I've gone for multi-hour hikes through the tundra (very tiring terrain to hike through)

wow how nice!

 

[heapsreal]

Tough question, as you have to know what's causing the pem. Is it a specific inflammatory cytokine, so blocking it should help.
Getting adequate sleep if you have had a big day can help. But sometimes I've found a big day screws up my sleep.
Pem is one of those core symptoms of cfsme.

 

[hapl808]

Tough question, as you have to know what's causing the pem. Is it a specific inflammatory cytokine, so blocking it should help.

Yep. Immensely frustrating because I'm severe enough that no amount of rest makes the brain fog go away. But I can relatively easily push through it for up to an hour or even 1.5 hours on a good day (work on the computer, talk on the phone). But if I do that, I pay for it with a PEM crash of maybe 3-10 days.

 

[heapsreal]

Yep. Immensely frustrating because I'm severe enough that no amount of rest makes the brain fog go away. But I can relatively easily push through it for up to an hour or even 1.5 hours on a good day (work on the computer, talk on the phone). But if I do that, I pay for it with a PEM crash of maybe 3-10 days.

I see brain fog as different to pem.
For me brain fog is a sensation I feel in my head like it's full or full of cotton wool. The fog can progress to a headache of different severities.

Pem for me is fatigue I get the following day after doing some sort of activity that drains your batteries more than expected.

A crash is from a viral reactivation or overdoing it for too long and your batteries have run dry and no jump start will help. All you can do is wait or veg it out for several days as the batteries get some charge back in them. It's a slow return. That's when I find just trying to get as much sleep as possible is all that will help.

 

[Wishful]

wow how nice!

It really is. After suffering worse symptoms for a while, I really appreciate being able to enjoy hikes again.

As I read the tracks, wolves like to stop and play (or dance together?) frequently, and otters love sliding down snowy slopes. Nature.

 

[Rufous McKinney]

otters love sliding down snowy slopes. Nature.

are you near a river?

 

[hapl808]

I see brain fog as different to pem.

Yes and no for me. I have constant brain fog, but during a crash that brain fog gets much worse and even more debilitating. Muscle pain is the same. Always some level, but during a crash it gets much worse and maybe changes a bit to feeling 'poisoned' instead of just regular discomfort.

Sometimes it can be hard to differentiate PEM crashes from just symptoms worsening temporarily. Some symptoms change in severity, some in quality, etc. Once you're severe, though, I don't think most of the symptoms ever go away no matter how much you rest. For me that's the significant difference between moderate and severe - I have no 'good' days or hours anymore.

Anyways, I think it's all a matter of semantics, as what length of crash qualifies as PEM, or can you have PEM without experiencing a crash, etc. And since we all experience it differently it seems, even harder to categorize.

 

[wabi-sabi]

Sometimes it can be hard to differentiate PEM crashes from just symptoms worsening temporarily. Some symptoms change in severity, some in quality, etc. Once you're severe, though, I don't think most of the symptoms ever go away no matter how much you rest. For me that's the significant difference between moderate and severe - I have no 'good' days or hours anymore.

This is me too. Brain fog is something I always have, but it gets significantly worse in a crash. For example on a good day, reading is hard. On a crash I can't read and have difficulty making words out loud.

Sometimes it is hard to tell the difference between a bad day and a crash... and then I crash and remember how much worse things can get. It's a frightening place of disorientation, paranoia and almost hallucination. During a crash, I don't just have a hard time thinking- I feel like I am loosing my mind. It really feels like I am dying as I feel the lights go out in my brain. Now I am really scared to die, because I know it's not a peaceful falling asleep forever, but a horror of disorientation and terror where nothing makes sense. Guess I'm feeling sort of dark today...

 

[hapl808]

Guess I'm feeling sort of dark today...

And every day, but sometimes we are able to sublimate and hide it better. :/

But yeah, that's a good description. I think I can't tell the difference, then I do a videochat and the next week is remembering how much worse I can get. Not sure if the semi-crashes are still crashes or only the ones that put me in bed for multiple days.

Anyone tried TUDCA? Just stumbled across some potential benefits for acid reflux, and since my crashes start with acid reflux thought it might be useful. I bought it awhile ago for liver benefits with some of the medications I was taking, but don't think I ever properly trialed it.

 

[wabi-sabi]

I have tried LDN and it helps on sleep and pain. So maybe that helps on PEM too, in a round about way. It hasn't made me able to miraculously walk.