[cocire]

They really only took a tiny piece of brain out, I guess. They didn't show me, sadly. :(

It was all occipital lobe so vision would have been the only thing affected. I had terrible vision in the lower-left quadrant of both of my eyes anyways, based on a medical field-of-vision test, along with my own tendency to bump into people and things on my left side (still the case).

Based on many electroencephalographs (EEGs), they decided my epileptic seizures stemmed from the lower right occipital lobe of my brain. It is kind of neat proof to me that the opposite side of your brain has effects on the other side of your body; right occipital lobe affecting left visual field.

So, they removed some brain, which actually did not affect my epilepsy at all, positively or negatively. I went into the hospital, got surgery, and was out maybe a week later - when that photo was taken. I had to go back a week or two later to have the staples taken out.

My lower left peripheral vision is worse than it used to be. I have about eight visual seizures that each last maybe a minute or two per day, but I can carry on a conversation and nobody even knows. I take seven pills every morning, and another four each night. I do not have a drivers license, car, or really ever plan to drive again, but that is kind of why I moved to live in a city where I can walk, take public transit, and get deliveries quickly/reliably.

On the nerd side, I track my seizures with my own homemade Python Django (w/ REST Framework) application, PostgreSQL, and an Apple Shortcut, usually from my iPhone or watch. Datasette and Highcharts make visualizing all my seizures tracked since December 2021 pretty cool.

[sitkack]

Thanks for being so open about this. Have you worn one of those diy and prosumer EEG devices? So when you have visual seizure, I can only imagine it is somewhat similar to visual migraine, that is my only reference, you tap log it on your device which triggers some web request. Have you noticed any patterns? What do your doctors think of the data? You sound ideal for working in a neuroscience lab, :)

[cocire]

Never heard of a DIY/prosumer EEG! I did do an ambulatory EEG for the hospital once overnight where I left wearing the fancy cap while all wired up, with a little backpack for the electronics and recording device. All the EEG leads fell off when I was sleeping overnight, so it ended up only getting about 6 hours of data, instead of 12 hours (but I got charged like $600 anyways).

My whole Django app is actually open source, including the Apple Shortcut that sends a JSON POST to Django REST Framework to add seizures.

https://github.com/ericoc/seizures.ericoc.com (lots of screenshots and examples of the live data)

I definitely have patterns. I swear my occipital lobe needs its watch battery changed. I occasionally will have 3-6 seizures all spaced exactly 10 minutes after one another. Sometimes exactly an hour apart too. To the minute.

Doctors like when I hand them a chart showing my seizures going down over time, but hate it when the chart shows them trending towards more frequent. The brain seems SO poorly understood from my perspective. I get the feeling that neurologists are not sure what to say or think about the data, since it is not an EEG or MRI.

I called my seizures "double visions" as a kid. They usually only last a minute or two. I can generally carry on a conversation without anyone knowing (besides from noticing me tapping my watch, maybe). My parents and my ex-wife could occasionally tell when I was seizing, but I live solo, commute on foot, and keep my cat alive.

My seizures really just consist of an odd minute or two of an "aura" (I know it's happening) with double vision and confusion. However, I have occasionally had much worse seizures - usually only if I miss medication, and when asleep. I once woke up to a passenger on a commercial flight telling me that they were a doctor while we were mid-air, before I threw up. I have also woken up on my bedroom carpet with bumps, bruises, and scratches maybe half a dozen times in ten years, but have never had any seizure-related injuries requiring urgent/emergency trauma care.

Stress definitely seems to be a trigger for my seizures, but not photosensitivity. I do not really mind strobe lights, but the randomness of the Sun shining through tall thick trees while driving down a long straight road is terrible.

[layla5alive]

Have you worn a CGM? Are they at all mediated by carbohydrates/diet?

[cocire]

never worn a CGM (had to look up the acronym, admittedly).

I do not drink coffee anymore, alcohol or much caffeine, and try to avoid super sugary drinks. I try to stick to milk, juice, but mostly just water. The neighborhood corner store sells these super yummy Boylan Black Cherry sodas though...

None of my doctors or I have ever really associated my seizure frequency with diet. I have definitely heard of people having improvements with things like a ketogenic diet for some types of epilepsy though!

[interloxia]

Do you also track /check your field of view?

A long time ago I made a simple tool to check my father's visual field changes due to cancer. At first he found it interesting to track his condition. Unfortunately it accurately tracked his condition and he, in my option wisely, stoped using it.

All the best managing and tracking

[cocire]

I never have really tried to measure my own peripheral visual field - no! I am not sure how I would track it - how did you?

I mostly notice bumping into things on my left side. While generally people "walk to the right" on sidewalks and such, I prefer to stay as left as I can on a path. For example, walking home through downtown, I like to try to keep my left shoulder as close to buildings as I can, to avoid people coming up behind me on my left side, since I always risk bumping into them. I always choose seating in venues that is very left of center as well.

While I generally do not have serious seizures resulting in falls, it's funny that the fall detection on my Apple Watch has only ever gone off when I accidentally bang my left wrist against a door frame because of my poor peripheral vision.

[interloxia]

I did a little reading about Hemianopsia and came up with a very simple test about 15 years ago. It was a simple winforms app. One could write it/vibe code it very quickly in just about anything.

The test was run seated at a desk with a 24'' monitor. I drew a small square in the center of the screen on a back background and created a regular grid of dots which could be subdivided. Each small dot at random was briefly shown and I recorded the time it took him to hit a key. The defaults were .5 to .8 seconds and an off time from .75 to 2.5 seconds on a 7x5 grid with subdivisions for the areas he had trouble, but it's long enough ago that I don't remember what settings he preferred. The sample file I have to hand has 140 dots.

I set it up so that he could customise the number of columns and rows and the number of subdivisions to target his vision loss without having to spend too much time where it didn't matter. The outputs were a grayscale image of the reaction times and the reaction time values. It was helpful to preview all the dots before starting the test.

The main issue with the test was to keep it relatively short. If it took too long he found it boring and caused a bit of eye strain.

If I were to write it again I would to move the center square occasionally throughout the test, and then offset the test grid from that location. Unfortunately he didn't have much time and it eventually became a bit stressful to know the rate of progression of his disease so he/we let it go and I never tried to ease the eye strain issue.

> "walk to the right" on sidewalks and such, I prefer to stay as left as I can on a path." Visit Australia for a mostly keep left experience (at least in the past) :)

[cocire]

This sounds like such a cool useful project!

I had to look up the proper name for it, but I have always had my visual field medically tested with a "Humphrey" visual field test machine in a hospital:

https://www.ncbi.nlm.nih.gov/books/NBK585112/

TIL, there is also something called the "Goldmann" perimeter test.

Visiting Ireland, as a kid, was fun for sure! I remember my father driving a "right-hand drive" car that had the steering wheel on the opposite side of what I was used to - on the opposite side of the road from what I was used to - all, while shifting the manual transmission with his left hand, but the floor pedal arrangement was the same.

Curiously, both of my parents are left-handed, but I am right-handed. I have no family history of epilepsy either! Maybe I am adopted.