Auditory and visual seizures in my ME brain

While going to Dr Hyde’s office today, I had a visual hallucination. I was going 120km/h on the highway and saw a female deer running towards me, on the left hand side. I was startled, but no other car driver seemed to notice it. Then I looked in my rear view mirror, expecting the see the deer get hit by one of the many cars on the highway, but there was nothing. Not on the sideway, not on the highway. Nowhere.

Then I realized there was no deer. I was freaking out because for the past 2-3 months I had been having auditory hallucinations. I know they weren’t real noises, because I always had a witness to confirm they did not happen. To me it’s the same as a real noise, just like the deer looked like the real thing. So I probably have even more when I am alone, but don’t know it.

I told Dr Hyde about that and he immediately said he knew what it was. He explained they were not hallucinations, because hallucinations are not real. What I have is real, it’s auditory and visual seizures caused by my brain injuries, and the output is a real image and real sound, produced by my brain. I have moderate to very severe hypoperfusion on many parts of the brain due to the enterovirus infection that led to ME.

Dr Hyde says I could take anti-convulsion medications, but he would rather I don’t unless it becomes severe. He also gave me the name of a neurologist who specializes in those and treats another one of his patients, who has them so severe he cannot function. He asked me if I also have olfactory hallucinations, but unless somebody tells me it’s not real, I can’t know. My brain is just “ printing “ random visual, auditory and olfactory memories, for whatever reason, and I can’t tell the difference. The deer probably happened because I saw a deer crossing sign and unconsciously worried about it.

Dr Hyde also noticed on my brain map from the SPECT scan that I had a severe lesion on the right side, near my eye, that was due to an “ almost “ stroke. He was right on, because I lost my vision in the right eye in 2014 and doctors thought I had a small stroke. So everything holds together.

I am relieved because I thought I was starting dementia, but this is scary stuff also...

I thought it would be interesting to share. Maybe others have it too, since apparently it’s not uncommon in ME patients.

 

I have had both visual and auditory hallucinations, due to lack of reference points currently I am unable to determine how frequently these are currently occurring. More common, at least more obvious, are hallucinations where things disappear. I try and walk through things that are there, that exist, but I cannot see them, even upon hitting them, I check to see what I hit, see nothing, so attempt to proceed, and then collide with the same object again.

This has been known to occur with people, as well.

I've never met anyone else who has experienced this, or who understands it, positive hallucinations are one thing but deletions - no one.

 

Well, I am glad you posted this because I think it happened to me as I was leaving to go back home.

Dr Hyde was in my car, and told me to go to the next stop because he wanted to explain to me how to find my way to the highway (I am in a city that I don’t know well). So he explained and got out of the car and stood on the sidewalk, waiting for his pedestrsin light.

I was at a four way light stop. This was a big intersection and cars were passing by. I was turning left, but there was no light to show me what to do. There were lights on all other 3 corners, but not in front of me, so I couldn’t tell if I had the right of passage to turn left. I could see the pedestrian light, though and it was showing time to cross and counting down from 25 seconds.

So I stayed there, very confused, trying to understand why one light was missing and wondering what I would do. After about 30 seconds, and before I got into a panic state, I saw Dr Hyde on my right, waving at me and telling me to go and turn. Thank god !

This is very, very scary stuff. I’m not even sure if Dr Hyde was really waving. I put a reminder on my calendar and will call him on monday to find out. Then I might decide not to drive agsin, at least not in strange places, and no more long distance driving.

From what Dr Hyde explained to me, this fits also with the seizures. Our brains are simply printing information when seizing and altering existing, real images but we can’t tell the difference.

Are you still comfortable enough to drive or did you stop ?

 

@Wonko maybe the anti-convulsion medication would help you if this is disrupting your life too much.

Have you seen a specialist ?

 

I stopped driving in 1994 due to the number of unexplainable accidents I was having

At the time it was thought it might be epilepsy but this was later discounted.

edit - it's not frightening, at least for me, it's concerning when I try and walk through people, I can see somethings wrong, I can feel somethings wrong, but have no idea what. It's painful and expensive when I repeatedly try and walk through a bed, that I should know is there, but can't remember or perceive, with enough force to break it, that's another defect, when I encounter a problem not subject to a rational explanation I tend to assume that my command to my body must have been faulty/weak, so ramp it up - unsurprisingly this doesn't always work but it seems to be a hardwired response.

 

In the 90's I was tried on a few anticonvulsants, initially with some positive effects, but over time, a fairly short time, the distortions they produced in both perception and my temporal sense were not tolerable.

i.e I would see things moving in waves, the ground was rippling, buildings the same, and it completely destroyed my sense of what time was, tell me you'll be back in 5 minutes and I'd have no idea, at all, what you were talking about. Prior to taking tegretol for instance I had, to my knowledge, never experienced an absence seizure, they became quite common, lasting for hours. Stopped the tegretol they largely went away, or at least my awareness of them did - people tell me I still have them but they are short, not take a step in the morning and the next it's dark.

I did see a few neurologists, psychiatrists, and even a psychologist, result - "yes you're having seizures, they are not epilepsy, you've been referred for an epilepsy assessment, so go away (but have you tried <alternative medicine, can't remember it's name but it was the smells one>)", "you're perfectly okay, handling a difficult situation very well", and "I suspect organic brain damage below the gross level we can currently detect, come back in 3 months", which never happened coz I kept getting my appointment bumped, by them.

Basically, my brain, sometimes not that functional on the basics, hasn't been for quite a while.

...and sorry @Dechi for apparently, accidentally, taking over your thread

 

I do, sometimes get migraines, I used to get them much more often, generally without much "pain", I have also had periods where they were really quite ouchy, I couldn't lie or even sit down for any length of time due to the increased pain, for days on end, possibly longer, time does weird things under those sort of situations, there is almost nothing but the pain, the pain has always existed, it will always exist.

I can, now, sort of tell when a perceptual muck up is occurring, at least some of the time, but generally I've resolved issues by moving stuff, if the bed was frequently invisible in a certain position, and kept being collided with, moving it to a totally different position helps, when going through doorways I've learnt to do it a certain way, as that way I don't walk into the edge of the door, first times unpleasant, the second and subsequent ones, within a few seconds, not nice.

 

@Wonko thank you for contributing to this thread. It is very informative and since this is rarely discussed, I am sure it will help others.

I do find it frigtening because up until now, I could still drive. My surroundings are not well adapted to life without driving. This is too big of a loss for me to envision at this point.

I upped my nimotop medication this morning. I had decreased it this summer, because of money issues. It’s very expensive. While I was at my normal maintenance dose, ie 60 mg, I never had this issue (or maybe didn’t realize I had it yet).

If it works, I’ll let you know. Nimotop is usually given at much higher dose to people who had a stroke. On a very short period. It increases blood flow to the brain and flushes toxins, that’s its only purpose. I did well on it for more than 1 year, so hopefully it helps.

 

Sorry to hear of both of your experiences.

Visual agnosia sounds interesting in light of this thread.
https://en.wikipedia.org/wiki/Visual_agnosia

If you have trouble reading the page, let me know and I'll break it up into smaller paragraphs.

 

Nope - that's not it Luther. The "objects" visually are simply not there, frequently when it's known they should be, no amount of looking, adjusting perspective (by say turning the head), brings them back, at least for a while. There is no apparent "gap", just normal vision without the object. Other sensory input, such as pain, doesn't cause the objects to become visible.

Then there's the other side, where knowledge of the particular object is not present, e.g. the bed, I presumably know that beds are a thing (although how I would verify this in that situation is unknown, for some reason when I collide with things the automatic response isn't to make a list of all the things I know exist and attempt to find if something's missing, as it would, in that situation be impossible to detect), I should know the location of a bed in my own home, but at those times, I don't.

I have no idea what I have collided with is a bed, I have no real idea that I have collided with anything, just that movement in a particular direction seems blocked, for no apparent reason. This is not a tenable state, it is not a state that instinctively makes sense, the "rational" response of stopping and examining the situation closely is not something I am capable of in that situation.

The only reason getting through open doorways was solved is because walking into the edge of a door smarts a bit, when this is immediately followed by another attempt, using more force, and then another, using yet more force, it hurts enough so even my brain takes notice and gives up for a while, and after a while I was able to see the door and figure out what must have happened, and come up with a solution, which eventually, after several more incidents, became habitual.

*edit - I should point out that these are not, generally, every day events, they tend to happen in batches, i.e. I will have a month or 2 where they are fairly frequent, happening several times, and then nothing, nothing I notice anyway, for a while.

I have no idea if these sorts of things are still generally occurring, or not, because I would suspect in most situations it doesn't matter if I see, or don't see things, the disappearance of most objects, especially smaller ones, for a while, has no impact so doesn't get noticed.

Or it may simply not be currently happening.

(the solution to the door thing was initially, as all but one of my doors open on the left, to put my left arm out and wave it about a bit to see if it makes contact with anything before attempting to go through a doorway.

The logic behind this was simple, even if I don't notice that my arm has encountered something, which as far as I know has never occured, my left arm tends to be on my left hand side, if it did encounter something the fact it's attached to me, on that side, would prevent me from impacting whatever it encountered if that object was to the left of my left arm, which doors that are hinged on the left tend to be.

Now, with the advent of modern technological solutions, I use a combination of wedges, hooks and arm waving )