Talking wipes me out.

[Abdallah]

i have the same issue beside high blood pressure and fast heart beats and taking meds for them helped a little, and i have very bad fatigue

 

[Inca]

I had a stammer as a child and difficulty getting words out but since getting ME as an adult I find having to speak absolutely exhausting. I struggle to work out what people are saying to me too and have constant Tinnitus so the concentration needed to make sense of a conversation and get a reply out uses a ridiculous amount of energy for me.

I can do more on a good day when I'm home alone and don't have to talk to anyone. A couple of hours having to sit up without a break and having long conversations absolutely wipes me out!

 

[Sidney]

Listening is as bad for me - worst of all, for me, is writing an email, trying to say what I really mean…Texting easier but I find often that I’ve spent 5 minutes wording a short one. Choosing emojis takes almost as long as finding the right words…after any of these I am truly wiped out…

 

[DomSaxum]

Just to toss in my 2 cents - talking wipes me out as well. On the plus side - it is one of the few places where my doctor can witness what happens to me firsthand, as I can't get through an explanation of why I've come before I have to stop and pant for a while. When I CAN continue speaking, it is with much less force, sometimes down to a whisper.

 

[Dysfunkion]

This also happens to me and it seems to be related to some informational processing barrier an d when it's crossed all of that information becomes hard to navigate noise. It'll happen with reading, thinking, and talking. I'll know I hit it when I'm talking when I start to lose a little control over how I can form words and the words I can string together. The more it goes on the more social skills I lose and start to get overwhelmed. Even normally in conversation things can be a bit hard because of my troubles with finding words on the fly and pulling things out of my memory but I can generally keep myself spontaneous enough socially to navigate around that. Sometimes socially things can be a bit awkward but it's fine until I hit "the wall" and then I'm almost completely socially dysfunctional. What's the most embarrassing about it is I'm fully aware of what is happening but can't control it and if someone first interacts with you during one of those times you already have likely tanked your image to them.

 

[hapl808]

This also happens to me and it seems to be related to some informational processing barrier an d when it's crossed all of that information becomes hard to navigate noise. It'll happen with reading, thinking, and talking. I'll know I hit it when I'm talking when I start to lose a little control over how I can form words and the words I can string together. The more it goes on the more social skills I lose and start to get overwhelmed. Even normally in conversation things can be a bit hard because of my troubles with finding words on the fly and pulling things out of my memory but I can generally keep myself spontaneous enough socially to navigate around that. Sometimes socially things can be a bit awkward but it's fine until I hit "the wall" and then I'm almost completely socially dysfunctional. What's the most embarrassing about it is I'm fully aware of what is happening but can't control it and if someone first interacts with you during one of those times you already have likely tanked your image to them.

Exactly all of this - information processing. A mindless YT video is fine. Trying to learn something is more difficult. Talking on the phone even more difficult. And I use the same description when talking to friends, because I hit 'a wall' and sometimes rather suddenly. If I stop, then I usually recover in about a day. If I don't stop, then I'll end up in a 2-3 day crash or longer.

If I could fix this one symptom and was still housebound, etc - my life would be much improved. Almost nothing seems to improve it, though.

 

[Dysfunkion]

Exactly all of this - information processing. A mindless YT video is fine. Trying to learn something is more difficult. Talking on the phone even more difficult. And I use the same description when talking to friends, because I hit 'a wall' and sometimes rather suddenly. If I stop, then I usually recover in about a day. If I don't stop, then I'll end up in a 2-3 day crash or longer.

If I could fix this one symptom and was still housebound, etc - my life would be much improved. Almost nothing seems to improve it, though.

Yeah it's among one of my worst and like you if I let it get out of control can lead to multi day energy crashes. There's no emotional factor to it either, it seems to be some purely functional thing about how my brain works (or doesn't for that matter). I haven't found anything myself that improves it, it's one of my most indestructible symptoms.

 

[DomSaxum]

Information processing. A mindless YT video is fine. Trying to learn something is more difficult. Talking on the phone even more difficult. And I use the same description when talking to friends, because I hit 'a wall' and sometimes rather suddenly. If I stop, then I usually recover in about a day. If I don't stop, then I'll end up in a 2-3 day crash or longer.

Just what I would have said . . . if I could talk for that long!
This energy drain due to information processing seems to increase if I must quickly switch trains of thought, as when someone asks a question about a different topic.

 

[Wishful]

This energy drain due to information processing

I think it's too early to jump to such conclusions. It may not involve ATP production, but rather it might be sensitizing--or desensitizing--neurons (or supporting glial cells) or some other such mechanism. Something caused by specific kinds of cognitive tasks, causes changes that result in dysfunction and possibly other symptoms elsewhere in the body. The fact that other cognitive tasks, which should be demanding of ATP, don't have this effect, means that it's probably not simple energy drain. The fact that it takes place in specific areas of the brain might be an important clue to what's going on. What's different in those areas?

 

[Wishful]

I have a problem with insomnia caused by specific types of cognitive exertion during a specific period of day. I can play a first-person shooter (involves rapid processing and evaluation and reaction) past 1:15 PM without triggering insomnia. Playing a turn-based strategy game (also involves processing and evaluation) to 1:25 does trigger insomnia. That doesn't seem to be as simple as "energy drain". My guess is that it involves changes in the environment in parts of the brain: building up or depleting something, or triggering a timer for scheduled maintenance, or some such thing. It could be more complex, such as triggering subconscious processing of events, maybe leading to replaying conversations or game moves with different outcomes, and no easy "stop now" signal.

There's an idea for a research project: EEGs of people who suffer from this abnormal reaction to socializing or other cognitive tasks, to see whether there's an abnormal level of activity, possibly persisting after the task is done.

 

[DomSaxum]

Daniel Kahneman in his book "Thinking Fast and Slow" recounts some fascinating research on the brain's use of energy under differing loads.

 

[DomSaxum]

Issues, to use the broadest term, seem to affect each of us first / the most at our weakest point. EXAMPLE: Run hard and you get a pain in your side, or sometimes a thigh. But one side more than the other. So, your weakest side / point shows the stress' impact first / most. Mental functions are as 'organic and electro-chemical' based as anywhere else in the body. So, different individuals would certainly have varying degrees or locales of impact. Just one more example of why ME sufferers are not uniform in symptom prestation, even if we knew the root cause was singular.

 

[Wishful]

Instead of "weakest", I'd say "most susceptible". Certain brain cells could be strongly superior in most ways, but that also might make them more sensitive to signals, resulting in them showing symptoms first. I wouldn't be surprised if brain cells retain some sort of memory of conditions (hormones, nutrient levels, cytokines, etc) when they developed, resulting in different responses to later signals. One person might have smell-processing neurons that are overly sensitive to certain signals, while someone else, who ate different baby food on day 112 and had broken sleep the previous night, might have overly sensitive brain cells in the region that processes pain signal from their feet. When those people get PEM, they display different symptoms. Just a thought experiment.

 

[triffid113]

I asked about this a year ago but I thought I'd revisit it since it's still an issue.

Talking wipes me. Even a short conversation.

After I talk it feels like someone stuck a vacuum down my throat and sucked all the air out. My chest aches. This is maybe more exhausting than doing something physical. Sometimes my throat hurts but not all the time.

I know its not a pulmonary issue. My O2 is fine after this. My lungs are fine. It's a crazy ME thing.

i know others have this problem. Has anyone figured anything out? It's one thing to not be able to go out but when talking does you in, how do you function? Email and Chat only go so far.

Please tag me. Thanks

Wow! My bf hates to talk. I didn't know this was a thing. He says he finds it taxing. I observed a couple at a mineral and gem show across the street and he communicated with her almost entirely by hand signals, facial expressions and an occasional encouraging sound / grunt.

 

[triffid113]

Issues, to use the broadest term, seem to affect each of us first / the most at our weakest point. EXAMPLE: Run hard and you get a pain in your side, or sometimes a thigh. But one side more than the other. So, your weakest side / point shows the stress' impact first / most. Mental functions are as 'organic and electro-chemical' based as anywhere else in the body. So, different individuals would certainly have varying degrees or locales of impact. Just one more example of why ME sufferers are not uniform in symptom prestation, even if we knew the root cause was singular.

So, you think this is a lack of ATP in brain? Interesting. I guess people have to think about what they are going to say. Although, sometimes I do wonder if everyone engages their brain to speak (please excuse my humor, it is directed at politicians, not anyone here)

 

[triffid113]

@minkeygirl

I wish you could find a reason for this. It much harder for you having no-one else to help sort out any day to day problems for you so I know its ongoing, I can't even imagine how hard that is. I get stressed at just the thought of having a conversation which involves complex issues, I can feel quite ill within secondsI've been told by an ME doc we don't realise how much energy is used in verbal communication. Wish you could find a solution xx

Actually I also find convo taxing when in person because I am one of those people who likes to not be noticed and convo definitely gets you noticed. I never thought about how it might take more energy to do or if that could be part of it. Interesting idea.

 

[Dysfunkion]

Actually I also find convo taxing when in person because I am one of those people who likes to not be noticed and convo definitely gets you noticed. I never thought about how it might take more energy to do or if that could be part of it. Interesting idea.

Actually I also find convo taxing when in person because I am one of those people who likes to not be noticed and convo definitely gets you noticed. I never thought about how it might take more energy to do or if that could be part of it. Interesting idea.

I had an interesting experience this week., if I keep a conversation casual I don't tend to have many issues but once I need to dig for thoughts and connect information too much then things tank and it can happen very quickly. At therapy yesterday I had a massive amount of information to go over and over the past days I wasn't doing too bad. I was even able to listen to some albums end to end the other night without much stress while doing other stuff online that was a bit mental resource intensive. After that session though I could barely use my voice properly, thoughts were somewhat scrambled and it was hard to immediately bring up information and process it, head was a bit more pressurized especially at the base of neck, couldn't move as well as I did before and was a bit jerky, and sleeping was harder.

The next day which was today I was clearly worse and everything from the night before stuck around but since some time has passed it wasn't as intense. As I was walking home today from work someone casually interacted with me and there was a huge delay in my response and I responded with something embarrassingly short and stupid way too late as I was still processing if they were even actually talking to me or not. When I went home from work I noticed I couldn't handle music as much as I did before and had to stop listening and my coffee didn't do as much either. the night before with music I just stopped when I wanted later at night and slept just fine. I was also not working and on vacation at the time so I had a lot more time to just relax and live at my own pace. So whatever this is, is an overarching mechanic governing everything using any kind of energy at all and it seems to begin in the brain. If it gets under a certain threshold then some activities are just unlocked again until something crosses an energy barrier and then downward slopes can happen much more with much less energy used. Conversation when very intense appears to be one of the most dangerous things I can do since it crashed me to a step lower over night from a single hour of it when hours of walking and watching things/listening to music over the week did just about nothing when over a high enough threshold in mild territory.

So, you think this is a lack of ATP in brain? Interesting. I guess people have to think about what they are going to say. Although, sometimes I do wonder if everyone engages their brain to speak (please excuse my humor, it is directed at politicians, not anyone here)

I wonder this too and I wonder if this is why I don't get physical PEM, I for some reason don't use much of my brain for things like walking around or lifting. But speaking and having an intense conversation engages so much of the brain at once that like an over heating processor it starts to damage the hardware the longer it goes on. This will happen in general but intense conversation does it noticeably quicker. When observing healthy people having a conversation I'm always blown away at how fast they are and how quick they can access and articulate information. I know all of that same information is there with me but it gets way too bogged down way too quickly and I crash. I am extroverted I notice from when I have extremely rare windows where I'm able to interact with someone and it goes smoothly but something is getting burned up for fuel by conversation very quickly that runs the whole show. When I hit severe before I didn't even have physical PEM as much as I could barely do anything save for sit back or lay down all the time. Speech though? I was barely even able to get the thoughts to mouth and all the thoughts were scrambled or just didn't really arrive at all.

 

[triffid113]

oh, this sounds a bit like my boyfriend... ok, I don't really know what's going on with him because he doesn't like to talk about anything that matters... just light stuff. But I am an intense person...my brain is always busy, always wondering about things, coming up with hypothesies, trying to understand new things and explain them (I am a nerd, and I have nerdgasms... cannot leave my brain idle for 2 minutes unless you shoot me!). My bf says he finds my convo "taxing". He can't drive when I talk (but that son-of-a-bleep can talk and ask me questions, I just can't answer them!). He does a lot of "zoning out" at home, which I identified by intense curiousity about how he could stand to watch anything as boring and slow on tv as pool or poker. And there are "random" nights when he can't sleep, although by and large, despite his claims of sleep issues, he falls asleep immediately. He would not take melatonin because it disagreed with him, but I relentlessly explored that because it seems unusual that one could not tolerate a natural product. I observed a link between his consuming alcohol and his inability to tolerate melatonin, so I convinced him to only skip it when he had alcohol that day (works so far). He takes a nap midday, most days. And he often claims that I talk too fast before he can process what I'm saying. (Women do speak faster than men, but... I never ran into issues like that before). The thing is...my bf is a normal, healthy guy - he's just old (10 years older than me). I never considered that what he needs is better functioning mitochondria... that he is declining into a disease state. That's the problem with growing old... you get sick and everyone assumes you're just growing old. You don't even realize there is a potentially fixable problem.

Well, I am now looking into mitophagy. Mitophagy is a type of autophagy. Autophagy replaces nonfunctioning organelles in a cell with good ones. Mitophagy is autophagy targeted at broken mitochondria. There are products online which induce it or you can try tea, pomegranate, resveratral, fasting, things like that. The newest one is rosuvit from oak. I take luteolin from celery, but I discovered it because I ordered the wrong cal-mag supplement (it had no magnesium and I was unaware). My blood pressure went way up so I had to find another means of controlling it. Luteolin helped tremendously in normalizing it. But when the bottle came it was labelled "autophagy". I started looking into that. It turns out mitophagy is a type of autophagy - it replaces nonfunctioning organelles in cells with new ones. So rosuvit is supposedly targetted at mitochondria. idk if the rest of the autophagy inducers can also fix mitochondria. Just found out about this today. I can't be sure my bf will try it because he doesn't like to take a lot of pills. I started luteolin myself only this year, so am sticking with that one. Still it should be on our radar.

 

[triffid113]

"Speech though? I was barely even able to get the thoughts to mouth and all the thoughts were scrambled or just didn't really arrive at all."

You sound really bad. I -myself- would focus on antioxidants to protect my neural mitochondria - like astaxanthin and melatonin and trying some kind of autophagy or mitophagy pill or substances. I have no problem taking pills and I rate antioxidants as one of the most important things to be taking. However, before I gave up on that I would do some investigating of doses...it might be important not just to know to drink tea, but how much.

 

[triffid113]

I had a stammer as a child and difficulty getting words out but since getting ME as an adult I find having to speak absolutely exhausting. I struggle to work out what people are saying to me too and have constant Tinnitus so the concentration needed to make sense of a conversation and get a reply out uses a ridiculous amount of energy for me.

I can do more on a good day when I'm home alone and don't have to talk to anyone. A couple of hours having to sit up without a break and having long conversations absolutely wipes me out!

I have tinnitus. I first got it when I started having thyroid trouble. Check your TSH - it should be between 1 and 2. Check lifeextension.com lab reference ranges. The reference range for TSH is bogus, not based on science. So, for me, it was caused by too much iodine. I corrected that and it went away. But a few years later it came back low level. I have really trouble keeping my thyroid where it should be - bad allergies wear out my thyroid, for instance. However, my tinnitus is now low level and easily forgotten. There are supplements with thyroid cofactors you can take if needed.

Wow. I wonder if a stutter is related to a need for neural antioxidants? I would look into astaxanthin and melatonin to see if they help. Surely there are others if you don't like either of these. But melatonin is the number 2 antioxidant for the brain next to dopamine. And astaxanthin is MUCH stronger than C + E. These are really very good choices.