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Yeah that slow grow was how they started me out as well. But this one was ostensibly to save me the hassle of having to gently caress around with all those different dosage pills. Really relieved it went this smoothly, although the nightmares are yet to be experienced.
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Jan 4, 2025 18:33
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Finally had one of the nightmares, compliments of the new medicine dosage. Roughly how long can the human body go without sleeping? Asking for a friend.
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Jan 15, 2025 07:49
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SerthVarnee posted:Finally had one of the nightmares, compliments of the new medicine dosage. Too long I think? Or not long enough? Have you mentioned the sleep disruption to your neuro? It's a known side effect and if it persists then you may need to reduce or switch from lamotrigine like I did. 150mg was definitely loving up my sleep, I'm down to 75mg now and I've definitely noticed a difference. Will be asking to go down to 50 at my next consultation and probably up on the Keppra. Lamotrigine I could maybe come off but it instantly stopped my migraines and there's no way I want those back. On the flip side I can't tell if Keppra is causing some hair loss or I'm just getting old.
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Jan 15, 2025 09:43
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Eh, I'll live with the nightmares (even if they make me whiny and creeped out right as I wake up). The new dosage has made a huge difference, removing even the general discomfort of looking at blinking lights, mounted on various work vehicles.
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Jan 16, 2025 09:28
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Powerful Two-Hander posted:
So I got this sleep EEG done yesterday morning. First off, I did not expect them to only use it around my peripheral vision. Second, I absolutely didn't expect it to a complete non-issue. If that part of the test was to prove I actually have photo-sensitive epilepsy instead of other versions, then my upgraded meds might have hosed me over here. Also, goddamn did I feel my age. It has been two decades since my teenage years of staying up all night. Came home around 11am and slept until 8pm. Now I just have to keep awaked for another...11 hours and I'll officially have fixed my sleep schedule. Still weirded out by the blinking lights being absolutely fine. She did mention that they didn't do the blinking lights test during that screening. And then later on she used it on me anyways. Maybe the peripheral vision one isn't the real blinking light fiesta?
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Jan 30, 2025 10:46
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I guess they do different things maybe for different presentation of symptoms? I'm getting absolutely *wild* dreams while reducing lamotrigine, hopefully that one fades away as I'm not getting much sleep due to constant things like try to break into my own house but somehow Run DMC have got in there already by using a secret tunnel in the garden and they refuse to open the door for me 
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Feb 4, 2025 13:10
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Yeah the dreams are something special. Anyone who is bored with their life needs to try this poo poo out. Then again, we're living in interesting times, so I doubt many people would want more excitement. Edit: gently caress THE NIGHTMARES. Why do they always have to include my dog getting murdered? SerthVarnee fucked around with this message at 04:57 on Feb 5, 2025 |
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Feb 4, 2025 14:49
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Found a new thing for trailers not to have! https://store.steampowered.com/app/1675830/1000xRESIST/ You'll know when you see it, 20 seconds in. Hit me point blank in my left eye. Medicated it was "just" a good punch deep into my eye socket. Unmedicated? Absolutely an instant seizure. loving hell did that ever come out of nowhere.
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Feb 9, 2025 13:43
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Hah! got myself a new addition to my network. I can add the CEO and founder of Sunset Visitor Studio to my list of contacts (they are the ones who made 1000xRESIST, linked in my previous post). Man I love when dev studios take the time to reply to a disabled dude, who cold calls them with an issue.
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Feb 17, 2025 00:56
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SerthVarnee posted:Hah! got myself a new addition to my network. Nice! Did they change the trailer? I guess they'd need to know what to check for in future. Keppra dosage changes: yet again I forget that all this poo poo makes me incredibly irritable when being changed and wonder why I'm being such a jerk until I remember. Then I get the tiredness, muscle weakness and tremor and it's like "oh yeah, I remember that this sucks".
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Feb 17, 2025 21:34
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Powerful Two-Hander posted:Nice! Did they change the trailer? I guess they'd need to know what to check for in future. It's marked "flashing lights: in the video title now.
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Feb 17, 2025 21:43
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This is the response I got: Thank you for writing to us about this! Apologies for the delay, as I was away from my computer for the last two weeks. We immediately added "(Flashing Lights)" to the trailer description on Steam. One can see this if you hover your mouse over the video on the Steam page. I really wish Steam allowed for some more visible overlay warnings on videos, on their store page. We can also look to include a warning at start up of the game — this may take a bit longer, as we're circling around on patch updates. We've been talking about a photosensitivity mode, but have yet to have time/labour to address it! We will assess some things upcoming! In the meantime, we have asked our Publisher to add flashing light warnings where appropriate on Steam — hopefully this will come into effect soon. Thank you for writing in about this — we'll try and do our best to address it!
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Feb 17, 2025 21:59
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Of all the countries in the world... So I found a Youtube channel where a guy travels with public transportation, documenting how accessible each place is for him and his wheelchair. Japan certainly win a price for helping wheelchair users. However. It turns out that signage, lighting and advertisement boards try to get people's attention with...strobe lights. SerthVarnee fucked around with this message at 14:52 on Mar 3, 2025 |
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Mar 3, 2025 14:48
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Yeah that's not so good, definitely not near railway tracks. I had a bunch of seizures yesterday, half way through changing my Keppra dose but whether it was that or poor sleep or something else (booze) it's impossible to tell. It's weird that I get them in a cluster then like...nothing. I think that it had been two months since the last but then again it's hard to really tell because what might feel like a crazy dream is actually a seizure or vice versa. Now I'll have to see if I get another set once I'm up to the consistent new dose. There's still headroom to increase it though.
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Mar 3, 2025 15:08
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Well today was a good day to be medicated! Went down to get the groceries, entered store, turned a corner, passed two aisles and the next aisle had a display with a couple of electronics, in this case various lights. One of which is the unholy abomination lovechild of a Christmas dome and a disco ball. The instant I saw it, it felt like I took a loving spear to the left eyeball. very bright blue light with an array of soft glowing lights slowly swirling around it. Fortunately the store staff took me very seriously when I mentioned it, especially when I mentioned that they'd have had to pick me up from the floor and get me an ambulance without my meds. So they apologized several times and immediately pulled the plug on it. No clue if they're going to put up a warning on them in general, but I can't image they'll be scrapping the whole batch. Quite sure that they won't be plugging it back in though. Took like 10 minutes before I could say I was back to full comprehension and general motor control, plus about 15-20 minutes before my eye stopped feeling like it had been stapled to my skull
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Mar 5, 2025 12:46
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So back when I started this thread, I just assumed I'd be ending with a 2-3 pagers thread, read by like 10 people and that would be it. Since then I've been in contact with so many organizations that I never ever expected to talk with. This Thursday I got to do a talk with PhD student from Stanford University, where I made a good enough impression to have my Q&A session be used for teaching material and be asked to hang around for future sessions. So uh...Thank you guys for asking me to tell a bit more about my disability. That is, so far: DigiPen Institute of Technology paying me to ramble, twice. Stanford University paying me to ramble. IO Interactive paying me to ramble. Being in direct contact with NASA. Participating in a podcast that helped fix the color blindness mode in Tekken 8. Getting Sea of Thieves to work on fixing some effects. Getting Valheim to fix a ton of effects. Helping a ton of indie devs find and fix a bunch of graphical issues. Having the head of Ubisoft Accessibility tell me that my ranting has made them change flashbangs from flashing white to flashing black, starting in Rainbow 6 Siege and being the new standard in all Ubisoft games going forward. Having a Microsoft director email me out of the blue, telling me that my feedback has made them remove Wasteland 3 from the steam store immediately and making a whole project out of fixing the seizure triggering webpage associated with the game. Being listed as an expert epilepsy consultant on Microsoft's database of accessibility resources. Plus my archive has officially had visitors from every continent except Antarctica. It did end up crippling me on the way there, but holy poo poo. I went from having low self-esteem and gently caress all confidence, to being able to say I've done my part in making the world a better place for people I'll never meet. SerthVarnee fucked around with this message at 09:58 on Mar 17, 2025 |
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Mar 17, 2025 09:02
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SerthVarnee posted:I went from having low self-esteem and gently caress all confidence, to being able to say I've done my part in making the world a better place for people I'll never meet. You really have, and even though I don't have epilepsy I really appreciate all you've done to educate people like me who want to make games that don't accidentally hurt/kill people in real life.
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Mar 17, 2025 09:46
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These terrible dead forums once again deliver meaningful change and slowly balance out accidentally starting 4chan and that time the secret service investigated lowtax because that one guy made bomb threats against George W Bush or whoever it was. Anecdotally, I have spotted a lot more by way of flashing light warnings but maybe that's just because I'm paying attention. Some are good (Stalker 2 has them up front before there are any lights in game), some are terrible (news programmes showing the warning while there are active camera flashes on screen, lol no poo poo guys), many in games I'm not sure you can actually quit out from.
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Mar 17, 2025 11:28
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Entirely unrelated but a child at my daughter's nursery has seizures from a form of epilepsy which prompted her to a) randomly announce this and b) say "my stomach hurts, maybe it's epilepsy?" Because all she knows is that it's some sort of illness and she's <5 so why not draw a line between the two? Later on she barfed everywhere. Anyway, I kept quiet on mine as trying to explain tonic clonic vs. focal aware and loves of the brain was probably going to confuse things even more but ugh poor kid. I think the carers have to be on it if he has one for his safety but also so the other kids don't run over to see what's happening.
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Mar 17, 2025 11:32
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Powerful Two-Hander posted:Entirely unrelated but a child at my daughter's nursery has seizures from a form of epilepsy which prompted her to a) randomly announce this and b) say "my stomach hurts, maybe it's epilepsy?" Because all she knows is that it's some sort of illness and she's <5 so why not draw a line between the two? Ah the memories. I spent...15 years or so, being absolutely poo poo scared of throwing up, because I had a clonic tonic seizure around the age of 10-12. Woke up on a different floor, foam covering my mouth, surrounded by gawking kids, with an EMT leaning over me, stating "drat lucky that he didn't throw up into his lungs and choked." I basically associated nausea with 50/50 chance of death by seizure induced vomiting. Someone might want to help that kid stop associating the two things.
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Mar 17, 2025 11:45
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SerthVarnee posted:Ah the memories. Oh I wrote that poorly, it was my daughter announcing this about the other kid. We were reading a book about idk wizards or something when she suddenly told me that. Her reference to her stomach ache and epilepsy was entirely coincidental/making associations at random. Yesterday she said "hmm maybe my head is allergic to wardrobes" because someone had mentioned allergies earlier in the day and later on she'd smacked her head on a wardrobe so clearly these two things were connected 
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Mar 17, 2025 11:50
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Lol, well that does indicate a healthy amount of creativity in your kid.
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Mar 17, 2025 11:51
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I'm super impressed by everything you've accomplished, Serth! I'm glad I was able to play some small part in your journey. Thank you so much for everything you've done for game players and developers. <3
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Mar 18, 2025 01:25
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Lol, I'm loving my new red text. Obviously meant as an insult, but I can't say that it's wrong.
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Mar 18, 2025 06:11
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