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Crisis averted. It turned out that a friend of mine had all the missing files archived on a harddrive. Goddamn did that send some anxiety through my system before it got sorted out. 3 Years of sacrificing my life through brain damage going up in smoke because I hadn't thought about Discord not wanting to keep images stored forever... Eesshhh.
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Mar 22, 2024 13:54
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Love the thread, but heads-up:SerthVarnee posted:So it turns out that there is an app available that does something really great for people with photo-sensitive epilepsy:
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Apr 3, 2024 23:23
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Oof that's a nasty surprise. Further interesting catch-up with my neurologist, not only are the weird deja vu experiences auras, but the rising sensation is as well. I'd always assumed both were the actual seizures by themselves. My description of "it feels different but I can't explain how" was met with "yes, we see this a lot, the difficulty describing the symptoms is what we're actually taught to look for" which is quite funny, in a way, seems that the Lacosamide is working though so up another 50mg I go on that. Apparently it's possible that the auras may never actually be eliminated, which raises the question of how I'd ever know that it was just those and not a seizure if I can't tell the difference. e: that said, the weird deja vu is different and is now more like "holy poo poo I've developed psychic powers and I visioned this!" than an intense flashback to a load of nonsense. Powerful Two-Hander fucked around with this message at 23:36 on Apr 3, 2024 |
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Apr 3, 2024 23:33
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Remulak posted:REMOVE THIS LINK, the target isn't there any more and the tumbler "can't find" page I got the first time was almost malicious. Holy poo poo, yeah, that's mean. For those curious but unwilling to click, it's a full-page, animated disco ball. I don't know why.
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Apr 4, 2024 00:27
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For some godforsaken reason tumblr has had some selection of massively blown up low-res danger gifs for that page for years and it's never gotten better. I'm certain people have complained to them, they just don't care.
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Apr 4, 2024 00:47
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TooMuchAbstraction posted:Holy poo poo, yeah, that's mean. For those curious but unwilling to click, it's a full-page, animated disco ball. I don't know why.
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Apr 4, 2024 02:44
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dirby posted:It's actually random. It was a full page quickly-animated MRI of a human head for me, which I assume is bad for those with photosensitive epilepsy. I reloaded the page and got a different annoying flashy background every time. As if I needed another reason not to go to tumblr!
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Apr 4, 2024 05:34
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Well that was a day to start the morning. Thanks a billion! Link removed. Oh poo poo, now I know how TooMuchAbstraction must have felt each time he woke up and all we European and Asian testers said good morning in the following manner: "we found a new way to break your game! Oh man it is so wild, you gotta see this poo poo." SerthVarnee fucked around with this message at 07:36 on Apr 4, 2024 |
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Apr 4, 2024 07:19
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Powerful Two-Hander posted:Oof that's a nasty surprise. The auras are those "I woke up an eldritch god and should really get around to running now" feelings right? Because if you get those on just random times and just before a seizure, that is one hell of a way to replace caffeine with anxiety.
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Apr 4, 2024 07:28
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SerthVarnee posted:The auras are those "I woke up an eldritch god and should really get around to running now" feelings right? At the moment they're like a "I have not only seen, but been exactly here before talking about this exact thing, is anyone else noticing this?", before it was like an incredibly intense memory but for absolute nonsense. It feels different but in some impossible to describe way. Same with the feeling of motion, it's different somehow. But what's weird is that I thought both of these things were the seizure, and if they're not then what was happening in the actual seizure part???
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Apr 4, 2024 09:38
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Are other people with you when they happen? Do they notice you stopping and staring into space or anything? Absence seizures are a thing and it's very possible you're not really perceiving what's going on when you have the seizure itself, but your brain is very good at filling in the blanks, so you don't really notice it occurring. Obviously ask your doctor and all. The deja vu effect is funny because I've had some meds give me POWERFUL deja vu even as someone who isn't photosensitive and just lurks this thread out of interest. That "oh god wait am I stuck in a time loop and I'm supposed to figure it out and do something different this time?" rear end deja vu. It's so disorienting.
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Apr 4, 2024 14:40
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My housemate sits in the same room, but he is autistic, likes his music loud and our screens block our vision of each other, so technically yes, but actually no.
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Apr 4, 2024 16:40
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To my knowledge nobody has ever noticed me having one, or nobody has mentioned it anyway. I actually had one while part of a whole group of people on skates and a)nobody noticed and b) I didn't fall over. I also definitely had one while in a conversation with someone and they didn't mention anything either. When I've told my wife after the fact, she said something like "you talk differently but I only notice that because it's me". Weirdly she only told me that recently when I haven't actually had one for a while.
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Apr 4, 2024 18:28
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Well that was a good first day of the Games accessibility conference. Got my blog out there, got a potential Q&A set up with Disney, got a shoutout to Waves of Steel and didn't even have a seizure. Oh and apparently also a potential participation opportunity with The Royal Society. UK’s national science academy, who are looking into accessibility in gaming as part of their Digital Assistive Technologies (DigAT) project.
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Apr 22, 2024 18:26
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Second day done, managed to snag a potential Q&A session with SplashDamage as well. Also made a few new contacts and friends (and I managed to unfuck my having stepped on the toes of two people from EA) Seriously though. If you don't want me to stomp on your toes during your prerecorded presentation, don't start the presentation with a huge screen saying "this entire presentation is 100% guaranteed safe for photo-sensitive people" and then proceed to gently caress up my eye with visuals. Both sides are lucky that I was on medication and there weren't anyone else seriously affected at the time. They have now gone from condescending to extremely apologetic and working with the conference organizers to have that slide removed from the youtube version, because I kept hammering on the fact that I wasn't trying to hurt them, I was trying to save their loving jobs before EA noticed the massive liability these two just opened themselves and their company to.
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Apr 24, 2024 08:18
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What was the image (if that even makes sense as a question)? I wonder if they "tested" it or just, pardon the pun, eyeballed it. Anyway, we visited a friend of my wife she hadn't seen in years and his wife is a consultant paediatrician who turned out to be doing some parallel work on epilepsy so we diverted the entire conversation onto that, much to the disappointment of everyone else I suspect. She mentioned that there's current research into a form of gene therapy that rather than adjusting current neurons, sort of "adds new ones" that then persist and act as dampeners on the brain activity causing the seizures, "permanently" apparently. She also mentioned that because of the under diagnosis of temporal lobe epilepsy due to its weird symptoms (and despite them being very specific I was misdiagnosed by a neurologist anyway) that the incidence is likely much higher, particularly among children I'd guess.
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Apr 24, 2024 08:58
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They used three still images from the good old Pokemon episode that sent kids to hospital in droves. It still hit me right in the right eye even though it wouldn't have done anything to me 3 years ago. Their whole showcase was on a program that EA has developed and is now making open source, which tests for graphics that passes the threshold of the accepted safety standards. All nice and dandy, except those thresholds are the once keeping people from having severe enough seizures to go the hospital in noticeable numbers. It is NOT 100% safe as they claimed and they were releasing this into the open with a very confident attitude, which tons of devs and advocates of accessibility was celebrating loudly while I was sitting there going "nononononNONONONOOOOO". Interesting stuff from your own little gettogether thing. Can't say I understood most of the fancy words, but getting just a tiny step closer to fixing the issues permanently without using a shovel and a coffin is very interesting. Let's see if they've fixed it yet. https://www.youtube.com/watch?v=W8awdBGv4vw&t=15367s Time stamped for your outrage pleasure. Yup their career suicide is still up there. SerthVarnee fucked around with this message at 11:25 on Apr 24, 2024 |
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Apr 24, 2024 11:22
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Love the "first, a disclaimer: this is all completely safe", I'm surprised there wasn't a lawyer that suddenly started screaming somewhere in the room. And yeah, I can see what you mean even without being photosensitive. Likewise that "we look for things of 3fps or more" doesn't really seem like it's going to work if it's a flicking back and forth
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Apr 24, 2024 12:25
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I upped the Lacosamide dose and searched for something related to the possible side effects (don't remember what now) and this led me down a Reddit community rabbit hole and wow are there some takes on driving in there. I'm still on a revoked licence (but have sent a review request), but there are people there that are like "I just didn't tell the DMV and lie to my neurologist about it. I have clonic seizures" and one guy that said "I once blacked out with a seizure while driving but when I came to I was at home so I guess it was fine"  Anyway, my case is essentially that I don't get any impairment and never have (there's an argument here of "if I did I drat well would have got a second opinion after being misdiagnosed instead of waiting 3 years") but even aside from that I'm nearly at the point where I'm sufficiently free for long enough to hit the default time limit. What's weird is that some people on that Reddit thread seemed to think that the auras count as seizures when my neurologist has very explicitly said that they're not . Also the new Lacosamide dose makes my eyes *lag* for about 3 hours. It's loving weird.
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May 1, 2024 22:51
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Meanwhile, I'm starting to wonder if I'm starting to run into some sort of early onset dementia. It's mostly all tiny things like "did I take a bath today?" while my hair is still drying from my bath. "Did the dog poop on this walk?" while I probably stood there looking at him spend 5 minutes to pick the perfect place before pooping. But it's also things like people asking me what I did this weekend and I'm just...drawing a blank. "I think I played video games?" "oh yeah that sounds like your usual weekend, which ones did you play?" cricket noises... I've always been known as the guy with a frustratingly good long term memory, but also as being kind of distracted most of the time. Worst one I had was when I started on the process of getting a neurologist to see me and starting up the medication thing. I had to go to town and ran through a gauntlet of about 7 micro seizures due to various minor triggers along the trip. I had 1.5 hours of waiting to do at the doctor's office and spent that time reading one of those waiting room magazines with like 6 lines of text on each page. 1.5 hours later, I had gotten halfway through the magazine (I'm usually a speed reader) and all I could tell you was that it was something about plants. When I came home, my mom asked me if I'd gotten all the little errands done aside from the doctor's appointment and I had to check my wallet for the receipts just to figure out where I had been. That confirmed at least that I had been all those places, but even with that and the time stamps I still couldn't piece together the chronological order of my day. Now that I'm starting to notice these tiny instances of forgetting everyday activities, I'm wondering if there is something slowly escalating and if so, is it the epilepsy damage or the meds that's doing it. Or maybe I'm just getting old. Hell I could even just be getting anxious about it because I notice some minor things, start thinking there's a pattern and get myself worked up over nothing. If I ever get that neurologist appointment (got a referral for one in December, have gotten confirmation that they've received the referral and that they are looking into when they have time to see me. This was confirmed to me in...March.), I'll definitely be talking to them about it.
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May 2, 2024 10:34
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Memory stuff is weird (and scary). I went for a second opinion precisely because I couldn't remember anything and my wife said "something is not right here". Like I didn't remember entire trips to places and of course didn't know that I didn't remember. But mine is temporal lobe and that's memory so there was a straight line to draw there. I'm gonna have to look up the lamotrigine side effects (you're on that right?) again, I don't remember (lol) if memory was one of them and I definitely had a bunch of them. I've weirdly started remembering things from like 30 years ago though, or maybe I'm more conscious of it idk. Then again my sister said I don't remember poo poo anyway because "you don't pay attention" so there is that.
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May 2, 2024 12:47
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Yup Lamotrigin Actavis. I mean it could also just be because there is a lot of dementia and Alzheimer rampaging through the extended family, only one of which I'm directly related to, the others are spouses of family members. We've had 4 people with it at the same time (down to 2 now, which I'm not sure if that is a blessing or a curse really.), so the topic presents itself very readily when things seem off for a little while.
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May 2, 2024 13:38
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