PEM from talking patterns

[Dysfunkion]

Right now I'm trying to get to the bottom of a specific PEM trigger group. When I'm in conversation for too long which can vary depending on how much I actually desire to speak and the emotional charge of it I notice something specific would happen and elsewhere I looked up talking and found that others experience the same thing with talking, thinking/talking to themselves, and reading.

Many like me will get a boost of energy but a very hyperactive energy my brain can't seem to put a break on that isn't anxiety but is very restless. I'll be in a great mood and will want to talk more but if I keep going the crash will be brutal. First I'll get the really hyperactive thing, then I'll get a complete drop off into brain fog where I can't form or find words well, I'll get an extreme increase in tinnitus and this electric overload feeling in my head (around forehead and back of neck like usual), and then after I won't be able to process much of anything with the most dreadful sense of malaise for hours after. Almost every case appears to get the burning feeling in their head when it happens.

So it's like in multiple people all with the same neuro-cognitive presentation all have the nearly identical crash process from the same group of things. The only things I seen people that are able to lessen it are dexmethorphan and with some people certain benzo medications. With me a short exposure of red light to the will lessen it but not completely eliminate it immediately and like usual the splash effect of a second exposure in one day no matter how long causes a different kind of crash that 1 and then some of a day.

So it's also like I identified almost 2 distinct crash clusters with me. One is extreme stimulation with the burning related talking and other stimulating activities and the other feels more like a complete drop off into the energy abyss where I can mostly just sit in a chair or move like a zombie until it passes and everything I do is slower like eating and talking. Movements will be slightly delayed. Waking up I'll often to just collapse back into bed if I don't try hard enough to force getting up. Crash type 1 I feel like I'm losing my mind and it's on fire wide awake while crash type 2 feels like I turn into a zombie.

What is everyone's theory on what the specific mechanisms for this is?

 

[Wayne]

Hi @Dysfunkion -- Your description sounds very similar to what I experience, and what I've been doing a lot of research on. You might want to take a look at the following thread I started. I myself have very little capacity to talk these days, and have to monitor my efforts very, very carefully. I'm currently starting some Network Chiropractic therapy that I feel has a lot of potential, and is already giving me some significant stabilization.

Trauma-Based Nervous System Dysregulation​

In this thread, it mentions the following, which I think is pertinent to your situation:

When the nervous system is healthy, it’s flexible — it can shift smoothly between “fight/flight,” “rest/digest,” and “freeze” modes. But trauma — especially chronic, early, or unresolved trauma — can lock a person into a dysregulated pattern. This can look like:​

• Hypervigilance or anxiety (sympathetic overactivation)
• Shutdown, fatigue, or numbness (dorsal vagal dominance)
• A constant swing between both (which can feel like unpredictability or emotional fragility)

 

[southwestforests]

Your recall of the specific details of these happenings is so much better than mine.
All I can say is that over the last decade there is an increasing frequency of times that talking will run down my energy and my voice will fade away.
And that it happens faster in times of increased general fatigue.
And then it is time to go lie down.

 

[Rufous McKinney]

my voice will fade away.

My voice goes first.

The one person I will call occassionally, she understands and knows right away I can't continue to chat. The brain goes next, I start to be unable to complete the sentence or thought I'm having.

I can start shutting down within a few minutes of the call, and enter a type of overall STUPOR. It's like abrupt PEM: all spoons used up. No Spoon Available. I could readily pass out.

After a couple of hours, I might perk up again. It's also possible I might not get a more classic PEM delay. I might be OK, because, maybe I didn't stay on the call long.

The thought of calling anyone- creates considerable anxiety. The nervous system just goes off.

 

[Rufous McKinney]

So it's like in multiple people all with the same neuro-cognitive presentation all have the nearly identical crash process from the same group of things.

I agree this is a really distinctive personal symptom misery we get to enjoy, which does not make alot of sense. ( Except I think Epstein Barr is living in my throat.) (and brain)

Hypervigilance or anxiety (sympathetic overactivation)

My nervous system: its so reactive.

Any sudden noise: I leap out of my skin. And I lead a very calm existence. good Grief.

 

[hapl808]

Many like me will get a boost of energy but a very hyperactive energy my brain can't seem to put a break on that isn't anxiety but is very restless. I'll be in a great mood and will want to talk more but if I keep going the crash will be brutal. First I'll get the really hyperactive thing, then I'll get a complete drop off into brain fog where I can't form or find words well, I'll get an extreme increase in tinnitus and this electric overload feeling in my head (around forehead and back of neck like usual), and then after I won't be able to process much of anything with the most dreadful sense of malaise for hours after. Almost every case appears to get the burning feeling in their head when it happens.

Yep, all of the above. The actual crash is usually delayed for me. Once I get off the phone, I'll 'recover' within a few hours, but if I overdid it - the next day or two is an awful poisoned feeling crash.

No idea the mechanism, and haven't found anything at all to really address it - including benzos or DXM.

 

[Rufous McKinney]

I asked the computer (not AI per se).....WHY are we so stressed out when we talk to other people?

Google provided this pretty good answer:

It's because people are unpredictable and if you have anxiety or past trauma, unpredictability is scary. For these types of people, interacting with people is also EXHAUSTING.

We're on high alert, reading people's emotions, facial expressions, tone, body language, motives.


....even if its just a phone call: I think all of the above can happen.

 

[Rufous McKinney]

But trauma — especially chronic, early, or unresolved trauma — can lock a person into a dysregulated pattern. This can look like:

• Hypervigilance or anxiety (sympathetic overactivation)
• Shutdown, fatigue, or numbness (dorsal vagal dominance)
• A constant swing between both (which can feel like unpredictability or emotional fragility)

it make sense, somehow. But is it a pattern? Isn't it also an entirely appropriate adaptive response to the physical conditions we experience?

 

[hapl808]

It's because people are unpredictable and if you have anxiety or past trauma, unpredictability is scary. For these types of people, interacting with people is also EXHAUSTING.

We're on high alert, reading people's emotions, facial expressions, tone, body language, motives.

This is not the case for me, although I understand it could be for many.

I am by nature an extravert. I love talking to people - phone, in person, anywhere. I'll talk to my best friend or the cab driver.

Even in high school, I'd talk on the phone for hours. Message people constantly, etc.

It's really not stressful for me to talk to people - it's actually quite stressful for me to NOT talk to people, but my physical health is better when I don't talk to people.

It's quite frustrating because it's not stress, it's not trauma, it's not 'exhausting' in a normal way (for me). It's invigorating - if I get on the phone, I immediately start feeling better…until I start feeling worse. Then I lose my voice, then start getting disoriented.

I get exactly the same reaction to listening to great music. I start to feel better immediately…until I start feeling worse. Then I start feeling that heat stroke sensation - then a crash will probably come (if not immediately, then the next day).

I don't really see how listening to a song that I've heard 1,000 times would be unpredictable or scary or anxiety-inducing, yet I get the same physical reaction.

My very vague guess is that the neurotransmitters triggered are 'good' ones, but the system cannot regulate them properly. It doesn't matter if it's a pleasant song or working on a fun project or a conversation with a friend - the system cannot regulate itself, so bad things happen. Ironically, very boring things seem to be better for me (music in the background that I don't really care for is less likely to trigger bad symptoms - but also does nothing for me).

Anyways, that's me.

 

[Rufous McKinney]

I am by nature an extravert.

so am I. Introvert only started in 2018, in my case.

I immediately start feeling better…until I start feeling worse. Then I lose my voice, then start getting disoriented.

similar here, and that is the typical outcome. I feel particularly disoriented, following calls.

But I understand your experience did not feel related to stress or unpredictable humans. gMine isn't really either.

The thing I think is going on is the Phone Call is an activity which is itself taxing and injurious to our bodies, causing internal physical stress, even if we are enjoying the chat. It's happening regardless of what we think about it.

to listening to great music.

I"ve been able to listen to music more often the last several years, something got a bit better there. But not for long, and not that often.

the system cannot regulate itself, so bad things happen.

Yes: something is going on Boyd chemistry wise.

 

[Viala]

It may be glutamate fluctuations.

Intellectual stimulation -> glutamate release -> overstimulation high -> crash -> compensatory inhibitory system kicks in too much -> fatigue, feeling like moving through molasses, until it normalizes. This can also be the cause of burnout in people who do intellectually demanding jobs, they may finish their shifts much more tired than people who do physical jobs. We in ME may be in a permanent burnout state with singular moments where things lights up and then we pay the price for it.

Other things that may be involved, cortisol, dopamine. Cortisol in stressful situations including eustress, dopamine from music, any pleasant thing impacting reward system.

I think working on GABA and glutamate may be crucial for us. Adding to the symptoms that you guys listed above, I have additional symptom which is a very strong thirst whenever I think or talk too much. I still don't know what causes it, I can drink a lot of water and this thirst just stays there. Possibly brain needing more glucose than it can get in the moment.

Things that helped me in the past with cognitive exertion were BCAA, but after a month of supplementation last year they started to make me very sleepy and I can't take them now, also don't know why, BCAA compete with dopamine for brain uptake maybe that's that. BCAA help some with PEM in general, it may be worth a try.

 

[Dysfunkion]

Yep, all of the above. The actual crash is usually delayed for me. Once I get off the phone, I'll 'recover' within a few hours, but if I overdid it - the next day or two is an awful poisoned feeling crash.

No idea the mechanism, and haven't found anything at all to really address it - including benzos or DXM.

I wasn't going to try either as much as I was curious, I wanted to try hops in that state since they have some kind of mechanism at GABA but I didn't want to mess anything up when I'm doing a bit better here. Guess for many even that doesn't work.

I woke up really histamine'd up today but no effect on the PEM level unless I overdo with what seems to be a bubble of things that do the same thing cognitively. The other day I even had something with a lot of soy sauce in it and that didn't contribute as much as I didn't feel so hot after. The only thing sensory I get is
going wild when it's triggered but my vision/smell/sense of touch/ect- will be fine.

It may be glutamate fluctuations.

Intellectual stimulation -> glutamate release -> overstimulation high -> crash -> compensatory inhibitory system kicks in too much -> fatigue, feeling like moving through molasses, until it normalizes. This can also be the cause of burnout in people who do intellectually demanding jobs, they may finish their shifts much more tired than people who do physical jobs. We in ME may be in a permanent burnout state with singular moments where things lights up and then we pay the price for it.

Other things that may be involved, cortisol, dopamine. Cortisol in stressful situations including eustress, dopamine from music, any pleasant thing impacting reward system.

I think working on GABA and glutamate may be crucial for us. Adding to the symptoms that you guys listed above, I have additional symptom which is a very strong thirst whenever I think or talk too much. I still don't know what causes it, I can drink a lot of water and this thirst just stays there. Possibly brain needing more glucose than it can get in the moment.

Things that helped me in the past with cognitive exertion were BCAA, but after a month of supplementation last year they started to make me very sleepy and I can't take them now, also don't know why, BCAA compete with dopamine for brain uptake maybe that's that. BCAA help some with PEM in general, it may be worth a try.

I'm thinking the same thing but LOCAL fluctuations since consumed glutamate doesn't really seem to contribute (maybe in extreme amounts it might? idk I don't wanna test that out since realistically I don't run into anything too glutamate rich often). That must be it but it's also like the compensatory inhibitory system may be engaged in some low grade fashion all the time since that crash can occur without this likely glutamate reaction. Dopamine when it's going on also won't be able to fire, coffee won't even really do anything if it's going on. I remember the near miss with curcumin I had some months ago and that crash occurred without any of the traditional talking type PEM in the opposite direct. Another interesting thing is that typical stress won't cause the specific talking PEM crash but when I was worse a spike of stress would make me feel like the absolute worst side effects of ultra high dosing vitamin C. It used to also almost instant give me cotton mouth and the tingles everywhere but now this doesn't happen even when I get a sharp spike of it but not sure what helped get that down. I'll consider the giving a small amount amount of the BCAA next, probably one of the only things I haven't yet.

I'm actually thinking it may even have something to do with the auditory cortex specifically or at least for some reason it's almost always involved. Even when talking to myself or reading this will happen but there needs to be the mental vocalizations without actually talking and a lot of connecting of information. When I was at the lower end of moderate in severity even listening to music for minutes after it was badly triggered would cause a further downfall. I'm an extremely vocal thinker as well as a motor mouth (this is not a fun combination with this) so I don't really process things like text without internally reading it all out loud.

I found this on the page of the wiki on the auditory cortex quickly looking it up "The primary auditory cortex is subject to modulation by numerous neurotransmitters, including norepinephrine, which has been shown to decrease cellular excitability in all layers of the temporal cortex. alpha-1 adrenergic receptor activation, by norepinephrine, decreases glutamatergic excitatory postsynaptic potentials at AMPA receptors.[22]"

I wonder if this is why ultra high dose vitamin C gave me that raw sense of over stimulation after first what felt like boosting my dopamine. If I kept going with it I would just keep up there but the crash down from it wasn't the same exact presentation of the talking type over stimulation PEM. Nothing else has ever done that for me in a very long time but at the same time that backfired so I went back down to a couple grams in the morning.

"It's quite frustrating because it's not stress, it's not trauma, it's not 'exhausting' in a normal way (for me). It's invigorating - if I get on the phone, I immediately start feeling better…until I start feeling worse. Then I lose my voice, then start getting disoriented." - Yeah I'm not getting stressed in interactions or doing anything, in fact i'm technically less stressed out than I ever been but it still happens. It's entirely mechanical to the point where it's like dictated by some complex internal algorithm with repeatable results that are very difficult to replicate with exact timing precision.

 

[Dysfunkion]

so am I. Introvert only started in 2018, in my case.


similar here, and that is the typical outcome. I feel particularly disoriented, following calls.

But I understand your experience did not feel related to stress or unpredictable humans. gMine isn't really either.

The thing I think is going on is the Phone Call is an activity which is itself taxing and injurious to our bodies, causing internal physical stress, even if we are enjoying the chat. It's happening regardless of what we think about it.


I"ve been able to listen to music more often the last several years, something got a bit better there. But not for long, and not that often.


Yes: something is going on Boyd chemistry wise.

I never talk on the phone much it happens much quicker and worse with the phone but then again I do have EMF sensitivity so that dog piles onto the response compounding it. I can listen to slow quiet music with a lot of space almost all the time without issues (right now Brian Eno's - Neroli piece) but when things get too fast, too much pulsing, and too much bass that's where I start to have big issues faster. But speed of pulses in music is the worst offender, the fastest way to induce auditory PEM for me is putting on a loud buzzing sound made of individual pulses. This is also super interesting because it's actually a wall that appears to be presenting itself in RLT too. More pulses of the red light a day, more rebound fatigue but it doesn't present itself like the auditory/internal voice/speaking PEM. I'll just go straight into zombie mode over some hours when I overdo it in pulse frequency. It's almost as if there's something super messed up with my ion channels themselves.

 

[Dysfunkion]

Hi @Dysfunkion -- Your description sounds very similar to what I experience, and what I've been doing a lot of research on. You might want to take a look at the following thread I started. I myself have very little capacity to talk these days, and have to monitor my efforts very, very carefully. I'm currently starting some Network Chiropractic therapy that I feel has a lot of potential, and is already giving me some significant stabilization.

Trauma-Based Nervous System Dysregulation​

In this thread, it mentions the following, which I think is pertinent to your situation:

When the nervous system is healthy, it’s flexible — it can shift smoothly between “fight/flight,” “rest/digest,” and “freeze” modes. But trauma — especially chronic, early, or unresolved trauma — can lock a person into a dysregulated pattern. This can look like:​

• Hypervigilance or anxiety (sympathetic overactivation)
• Shutdown, fatigue, or numbness (dorsal vagal dominance)
• A constant swing between both (which can feel like unpredictability or emotional fragility)

I've made a lot of progress there but this isn't it. I mean if I experience a response when in PEM from this exact mechanism it's far worse but having getting locked in that shell shock like state almost weekly from triggers I can't entirely escape from it doesn't do what I'm referring to here. That response in the freeze bubble doesn't even really cause any of that brain burn and I just generally feel wired and partially paralyzed until it calms down. A sudden shock to my system also doesn't do the same thing there but doesn't hurt as much anymore.

 

[southwestforests]

I am currently living, as in right now this very moment, a little bit of this.

A few minutes ago got off phone with my 84 very soon to be 85 years old Dad to report that when I went to do a couple important errands this morning related to housing renewal, I checked mailbox for yesterday's mail and an important document they mailed me had arrived.

The conversation lasted only a few minutes till my voice gave out.
After being out in the heat wave morning I had to rest several hours before being up to calling my parents.
And the call began with my voice already iffy because of that fatigue.


In healthier days I'd be making progress on a model or miniature right now while it is too hot to go out this afternoon.
(currently 93F, heat index 106F, 33.8C & 41.1C @ 2:50pm)
Too fatigued right now to focus on that kind of thing.

This lifestyle is very, Very, VERY, frustrating.
(so is this heat wave, but that's another topic)

 

[Dysfunkion]

I am currently living, as in right now this very moment, a little bit of this.

A few minutes ago got off phone with my 84 very soon to be 85 years old Dad to report that when I went to do a couple important errands this morning related to housing renewal, I checked mailbox for yesterday's mail and an important document they mailed me had arrived.

The conversation lasted only a few minutes till my voice gave out.
After being out in the heat wave morning I had to rest several hours before being up to calling my parents.
And the call began with my voice already iffy because of that fatigue.


In healthier days I'd be making progress on a model or miniature right now while it is too hot to go out this afternoon.
(currently 93F, heat index 106F, 33.8C & 41.1C @ 2:50pm)
Too fatigued right now to focus on that kind of thing.

This lifestyle is very, Very, VERY, frustrating.
(so is this heat wave, but that's another topic)

My dad is older himself and he can't relate to any of this. The only person who somewhat gets me now is my grandmother is in her late 80's right now (she's still pretty healthy for her age too, she may just live to the late 90's or even higher). The anger at my brain only makes it worse too, I wonder if it in general has to do with our brains not having any break system. It's like it can't degrade or release things when things dip under a certain point properly so I get put into a state of either hyper stimulation or borderline zombification with barely any in between.

If I was healthy right now is something I don't think about too much because it only makes me depressed. I try to be thankful I'm in mild and I don't ever compare my situation to people who are bedbound or nearly so (closest I got at worst was near chair bound and that was terrifying enough, I couldn't even imagine there's a level lower). The Summer heat here hasn't been too bad, I think we're actually going to be getting some cooler weather soon though I'm sure at the very end of Summer this is going to rebound into something like the brutal heatwave it opened up with.

 

[Rufous McKinney]

I have additional symptom which is a very strong thirst whenever I think or talk too much.

that happens alot, too.

 

[Rufous McKinney]

having any break system. It's like it can't degrade or release things

that is an insightful observation. We seem to experience unrefreshing sleep. For me that started up twenty five years ago. Thinking about it almost symbolically, we are not releasing things well. It's not getting flushed out. We need a break. Brake.

 

[Dysfunkion]

that is an insightful observation. We seem to experience unrefreshing sleep. For me that started up twenty five years ago. Thinking about it almost symbolically, we are not releasing things well. It's not getting flushed out. We need a break. Brake.

My sleep feels like nothing often, it's uncomfortable, I'm too hot and then too cold, and then it's morning and depending on what side I'm on one of two things happens.

1. I'm jolted awake and just keep trying to go back to sleep but can't looking at the time waiting till at least 5 AM and start the day cause sleep clearly isn't happening. or..

2. If I'm on the low/under release of neurotransmitters/hormones/whatever is going on side and I try to get up but I keep fainting back into bed losing huge chunks of time each time it happens until I can finally get going enough to get out. Those nights the sleep will be almost instant and heavy but I won't feel refreshed.

It's really the only thing that makes sense with my PEM and crash patterns, I think it's best I actually stay on the higher side I often dig around the net in general looking for symptom clusters and I always find all of these super specific patterns in the noise but no one can seem to figure this out.

I went from having one of those over stimulating days before into zombie mode as I type this, so it can shift almost instantly too. No I have 0 stimulation and max fatigue. Like usual it starts building around 8 and hits hard 9-11 PM and just getting to bed time is a struggle because my brain suddenly has a need to just shutdown right then and there.Had this post open for more than an hour now taking it piece by piece. If I sleep before 11 PM I won't be able to actually sleep though so it's like a trap. 45 minutes to go, this is torture. Can't focus on or do anything but sit with quiet anything on in the background at most, nothing connects. The air hunger hits on and off the whole time. It feels like I'm a robot where someone hit the off switch. Watch tonight I'm going to practically faint in bed almost instantly and tomorrow morning I'm going to keep fainting back into bed, calling it now.

 

[Viala]

My sleep feels like nothing often, it's uncomfortable, I'm too hot and then too cold, and then it's morning and depending on what side I'm on one of two things happens.

My circadian rhytm is very good now, it's actually the best I ever had. Sleep was one of the things on my checklist to test if regulating it would make a difference. I wake up without an alarm clock early on most days and fall asleep fast.

It didn't change my ME symptoms much, I feel better a bit when I go to bed earlier and that's it. On days when for some reason I go to bed late or can't fall asleep, I am more tired, but that seems pretty normal. It's probably a different thing if someone can't sleep well on a regular basis. I wake up refreshed only when I'm in remission or close to remission.