I’m unable to read, watch TV, listen to the radio or even go on my phone for long periods of time. When I do these things, I feel a horrible sensation in my head, so I have to stop.
Does the sensation intesify the longer you do the activity? And does the sensation take longer to fade if you spend longer doing the activity?
I get this but I can also have poor coordination, speech difficulty, nausea, and poor balance.
Here are some specifics in case you also exerience these effects:
* Sound: I can't listen to any noise that comes out of a speaker because it causes brainfog, poor balance, and nausea. The more I push it, the more sick I will feel. Vestibular hyperacusis is the closest medical term that I've found to describe what happens.
* Sound: Rapid, repeating sounds cause similar problems.
* Light: LED and most flourescent lighting cause the same sensations in my head. LED is much worse and causes symptoms to arise more quickly. I can't use regular computer monitors because of this problem. I have to rely on an old laptop with a faded screen, dimmed, with light text on a dark background to reduce the light exposure. This light on dark setting helps a lot.
* Reading: I can't read anything on paper anymore without
rapidly (ie. within a single paragraph or two) experiencing head pressure, nausea, etc. that can last for up to 24 hours if I try to push it.
I think this has to do with neurological kindling and maybe partial brain seizures. I used to be able to read on paper but in moderation due to fatigue. A couple of years ago I pushed reading far too much over a couple of days and something 'broke' in my head/perception. This is why I think neurological kindling is involved. I'm now super-sensitive to reading text on paper.
Weirdly, I can read text on screen. I think this is because screen based text is known to engage more areas of the brain than reading text on paper. When reading on screen, maybe something in my brain is countering the effects that occur in my brain when I read on paper.
I've noticed that I start to feel ill when I engage in tasks that require a lot of repetition (doing, or perceiving). Drawing too long can do it, doing the same origami shape more than a few times can do it, seeing or hearing anything that involves rapid repeating patterns can do it. This is why I think partial brain seizures may be involved because certain types of repetition is a known trigger for some people with epilepsy. Maybe ME induces a lower seizure threshold for some of us.
Another idea is that it's a sort of induced migraine (migraine and epilepsy overlap in some ways). I used to get migraines in the past and have noticed some similarities between migraines and the symptoms I experience now.
Any ideas what it could be please?
Just the ideas listed above and the idea that it's probably related to overstimulation due to exertion. It's times like this where the IOM definition of "Systemic Exertion Intolerance Disorder" makes a lot of sense.
Sitting in a quiet field on a warm day is generally relaxing and doesn't require much in the way of exertion. Add a radio and now your brain would be processing more information, exerting itself more. Watching a movie requires even more exertion because now your brain needs to process video as well as audio. Add subtitles to that movie and there's even more processing from text shape recognition and interpretation and coordinating the text with the onscreen events. Even though you're just sitting there, your brain is doing a lot of work.
All this exertion is something healthy people can handle well for long periods but can be a severe strain even in short durations for people with ME.
I’m really annoyed because I’m literally doing nothing with my days, and it’s such a drag.
I'm severely limited in what I can do. No TV, no radio or music, no reading on paper, limited reading on screen, no board games that involve text or complex thinking, limited ability to draw due to muscle fatigue, can't meditate due to ME induced narcolepsy, can't exercise or even leave the house because I'm partly bedbound due to OI and fatigue.
So I spend a lot of time in my imagination. I imagine stories, imagine what different occupations or experiences might be like, try out scenarios where my life might have been different if I had made different decisions etc.
When I first started doing this I noticed that after a week or so I was getting better at it, with more vivid images and details in my mind. Now it's like living in a story with different characters that have their own personalities and sometimes even surprise me with what they say. I've read that authors notice this effect. They imagine detailed characters and a certain story line but then the characters gain a sense of life and take over the story in unexpected ways.
I'm so deeply limited in what I can do with my body, so I spend most of my time in my imagination.