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Powerful Two-Hander
Mar 10, 2004

Mods please change my name to "Tooter Skeleton" TIA.


Idk that's got a pretty good prog rocker vibe or something. If you find that offensive I apologise. Also that jacket's cool.

I was talking to a relative that I haven't seen in ages this weekend and discovered that they didn't know I actually had epilepsy and all they knew was that I'd been banned from driving so I guess they thought I'd been drunk driving, glad I cleared that one up!

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Midjack
Dec 24, 2007



SerthVarnee posted:

Best I've got so far is the fancy lenses on my glasses.

Aside from a worrisome case of the hipster look, they make a ton of difference in both blinking lights and color contrast issues.

No glasses just as a baseline.


Old glasses.


New luxurious hipster glasses with protection against seizure.


Once I take them off, the whole world just feels much more reddish/orange and harsh. They also block surprisingly little light, so they barely have any sunglasses effect at all.

You look good. The glasses match the trim in your extremely cute kitchen! :3:

B33rChiller
Aug 18, 2011




Yeah that's pretty rad that simple glasses can help.

B33rChiller
Aug 18, 2011




Midjack posted:

That seems doable, something like "average the brightness of all pixels over the last 10 seconds, reduce brightness of anything more than 2 standard deviations brighter than that to 2 sigma" though you'd have to get pretty deep into the video drivers to do that, I suspect.
I'm guessing "dynamic contrast" settings on displays do something just about opposite of this.
If the program to do what you mentioned is simple enough, it could probably be a setting in a display.

SerthVarnee
Mar 13, 2011

It has been two zero days since last incident.
Big Super Slapstick Hunk

B33rChiller posted:

I'm guessing "dynamic contrast" settings on displays do something just about opposite of this.
If the program to do what you mentioned is simple enough, it could probably be a setting in a display.

Funny you should say that.

https://forums.somethingawful.com/showthread.php?threadid=3987999&userid=0&perpage=40&pagenumber=7#post532538109

and here is the general gist of how the world looks to me now

https://forums.somethingawful.com/showthread.php?threadid=3987999&userid=0&perpage=40&pagenumber=7#post532511676


Also, to all the people saying nice things about my looks: :kimchi:

B33rChiller
Aug 18, 2011




Thanks for sharing these insights. Every day's a school day.

SerthVarnee
Mar 13, 2011

It has been two zero days since last incident.
Big Super Slapstick Hunk
In that case, I have a whole blog for you.

This thread usually get the stream of thought style posts as well as the general discussions about day to day experiences with epilepsy.
The blog gets entries about the effects I find in various games and a description of how it felt to go through each trigger.

https://electronicepileptic.wordpress.com/

Smik
Mar 18, 2014

SerthVarnee posted:

Best I've got so far is the fancy lenses on my glasses.

New luxurious hipster glasses with protection against seizure.


Once I take them off, the whole world just feels much more reddish/orange and harsh. They also block surprisingly little light, so they barely have any sunglasses effect at all.

They look good on you. I don't think they look hipster, hipster would have really thick frames or something right? Glad they help too!

TooMuchAbstraction
Oct 14, 2012

I spent four years making
Waves of Steel
Hell yes I'm going to turn my avatar into an ad for it.
Fun Shoe
"Hipster" is code for "I don't like how you dress/present yourself". It does not adhere to any one particular style.

SerthVarnee
Mar 13, 2011

It has been two zero days since last incident.
Big Super Slapstick Hunk

Hah! I love that comic.
I actually linked that one around on the first day I got the glasses.

Powerful Two-Hander
Mar 10, 2004

Mods please change my name to "Tooter Skeleton" TIA.


I think I'm probably going to get put on Lacosamide as an addition to lamotrigine as the lamotrigine hasn't quite 100% stopped the seizures (I had one about a month ago in an early morning) and the neurologist doesn't want to increase the lamotrigine further because of the side effects. I think the lamotrigine is still disrupting my sleep a bit even after a couple of months at 150mgx2 but that could just be getting old.

God the potential side effects sound weird though. "Rare cases of mania or unsubstantiated sense of wellbeing" what. Also unsteadiness, double vision, confusion or aggression. Cool, look forward to seeing which of those I get.

B33rChiller
Aug 18, 2011




Weird.
Dr: So how are you feeling today?
Patient: pretty great, actually!
Dr: [long inhale] concerning.

SerthVarnee
Mar 13, 2011

It has been two zero days since last incident.
Big Super Slapstick Hunk

Powerful Two-Hander posted:

I think I'm probably going to get put on Lacosamide as an addition to lamotrigine as the lamotrigine hasn't quite 100% stopped the seizures (I had one about a month ago in an early morning) and the neurologist doesn't want to increase the lamotrigine further because of the side effects. I think the lamotrigine is still disrupting my sleep a bit even after a couple of months at 150mgx2 but that could just be getting old.

God the potential side effects sound weird though. "Rare cases of mania or unsubstantiated sense of wellbeing" what. Also unsteadiness, double vision, confusion or aggression. Cool, look forward to seeing which of those I get.

Going through the epilepsy meds has got me looking at "regular" meds and their side effects and just bursting out "Is that all you got?!"

Also I noticed that I still get a sort of "heads up" signal whenever I come across something that would have been a seizure trigger before my medicating. Sort of the lightheaded feeling you get when you randomly stop just at the edge of a precipice and realize how close you were to taking a ride on the gravity train.

SerthVarnee fucked around with this message at 19:15 on Sep 24, 2023

Powerful Two-Hander
Mar 10, 2004

Mods please change my name to "Tooter Skeleton" TIA.


SerthVarnee posted:

Going through the epilepsy meds has got me looking at "regular" meds and their side effects and just bursting out "Is that all you got?!"

Also I noticed that I still get a sort of "heads up" signal whenever I come across something that would have been a seizure trigger before my medicating. Sort of the lightheaded feeling you get when you randomly stop just at the edge of a precipice and realize how close you were to taking a ride on the gravity train.

That's a great way of describing that feeling and I think I've been having the same thing. Should probably tell the neurologist that!

B33rChiller posted:

Weird.
Dr: So how are you feeling today?
Patient: pretty great, actually!
Dr: [long inhale] concerning.

Dr: have you considered we're all going to die?
Patient: wow that's a downer i don't feel great any more.
Dr: I pronounce you cured.

SerthVarnee
Mar 13, 2011

It has been two zero days since last incident.
Big Super Slapstick Hunk
Took me about 4 months, but I finally found something that can push through my meds and give me hours upon hours of nausea!

Pro tip, don't do long distance warps in Dyson Sphere Program if you are sensitive to flowing lights pulsating around you as you "warp" towards a distant star.

SerthVarnee
Mar 13, 2011

It has been two zero days since last incident.
Big Super Slapstick Hunk
I spent the day in Denmark yesterday.
Not doing that again ever.
The medicine works fine unless you expose me to a 2 hour train ride through a sunrise peeking through the forest

I had a lovely time eating lunch with my family (while being dead quiet and looking like I had a massive hangover). When we walked back to the station I was perpetually about a meter behind the group cause my brain couldn't give walking instructions to my legs faster than that and I ended up asking my dad to take a little side tour and escort me home to sweden, cause I wasn't sure I'd be able to get myself to the correct station.

So yeah, good lunch, horrible journey.

And I think that was painfully obvious to my family as well, since they know that my general health can be determined by the amount I babble.
Dead quiet? Something is very wrong.

This is however only the third time, in all the time I've been medicated, that I've had any issue with my epilepsy at all.
The other two times you can see described on my fancy rear end blog here.

https://electronicepileptic.wordpress.com/

They even come with the triggering videos/gifs as visual examples and I don't recommend actually looking at those (don't worry they won't autoload on entering the site, you have to actively fix a typo in a link to see them) if you don't want to start generating nausea powered electricity.

SerthVarnee fucked around with this message at 09:27 on Oct 17, 2023

Powerful Two-Hander
Mar 10, 2004

Mods please change my name to "Tooter Skeleton" TIA.


Oof that sucks, and it's something you can't do anything about. Do sunglasses help at all by damping down the flashes of light?

When I was a kid my mother thought that maybe the same thing was causing the migraines I used to get but that wasn't the case.

I stopped having them for years until pretty much when I started having the seizures, but fortunately the lamotrigine seems to have stopped them again and I haven't had one for a year. I should probably look up if there's a link where seizures cause migraines or migraines can cause seizures.

I had some more a few days ago so will probably be adding Lacosamide into the mix, I hope I can bring the lamotrigine back to 200mg a day though because above that it has been loving with my sleep.

SerthVarnee
Mar 13, 2011

It has been two zero days since last incident.
Big Super Slapstick Hunk
Sunglasses help, but when the sun is coming at you from the side during a sunrise, you can't block it out without pulling a bag over your head. Which is basically what I had to do for 1 hours of the ride.
That makes you feel oh so smart out in public and oh so safe around strangers.

You'll want to give this video a look and I can tell you that watching that talk was a horrifying experience as their descriptions were word for word descriptions of what would trigger a seizure for me.
https://www.youtube.com/watch?v=fqLxzWMjpIg

SerthVarnee fucked around with this message at 10:07 on Oct 17, 2023

Powerful Two-Hander
Mar 10, 2004

Mods please change my name to "Tooter Skeleton" TIA.


The Spidey Sense comment definitely tracks. I get that when I'm awake in that "feel like I'm about to but don't" sense, the only ones I've had recently have been when I've been in light/disturbed sleep and I think that's just straight into the seizure.

I never had a defined trigger for migraines apart from possibly stress, but even that was inconsistent.

Powerful Two-Hander
Mar 10, 2004

Mods please change my name to "Tooter Skeleton" TIA.


The guy sitting next to me on this train just opened his laptop and started playing vampire survivors which has a very large and obvious epilepsy warning when you start it and I've just missed a golden opportunity to say "excuse me!" and then start playing it myself 5 minutes later.

e: this is much less funny when I sober up slightly and think about of it in context of someone who is photosensitive being next to someone doing this.

Powerful Two-Hander fucked around with this message at 00:01 on Oct 25, 2023

SerthVarnee
Mar 13, 2011

It has been two zero days since last incident.
Big Super Slapstick Hunk
So yesterday loving sucked.

The highlight of the day was when my dog peed on the carpet. It all goes downhill from there.

Couple of hours after the dog pee incident (which I had no problem laughing about), the internet dies and comes back repeatedly. No biggy.

An hour after my internet finally stabilizes and I can say to actually have contact with the outside world again, I am informed that my uncle (dad's sister's husband) is dying of kidney failure after he and his Alzheimer got his leg wedged in between his bed and the wall for several hours while sleeping. Leg had to be amputated, but everyone agreed with the doctors that he wasn't going to understand that he no longer had a leg, so he'd end up injuring himself repeatedly until doing so fatally. So what was the point in amputating?

So he is dying, and I won't be able to travel the 250km to go to his funeral without ending up looking like I'm standing in line at the undertaker's shop.

15 minutes after that lovely news, my mom mentions that her sister is finally getting around to having that skin cancer on her nose looked at (she has been distracted by her hip operation and subsequent allergic reaction to the painkillers).

God I'm tired.


Powerful Two-Hander posted:

The guy sitting next to me on this train just opened his laptop and started playing vampire survivors which has a very large and obvious epilepsy warning when you start it and I've just missed a golden opportunity to say "excuse me!" and then start playing it myself 5 minutes later.

e: this is much less funny when I sober up slightly and think about of it in context of someone who is photosensitive being next to someone doing this.

This is a great example of why I won't be able to appear at the funeral. Simply can't risk it when the sunrise alone fucks me up for a full day.

As an added bonus to the suckage of my uncle's passing, my father's other sister's partner is also seriously hit by dementia and so is my grandmother on my father's side.
So whenever my aunt visits her mother at the retirement home (which she does weekly), she'll have to deal with the question of "so how is your husband doing" roughly every 15 minutes, cause grandma can't remember that the dude is dead.
Since grandma is a stubborn old lady, there is a big chance of her outliving the other dementia stricken member of the family and ending up wrecking the feelings of both her daughters every time they visit.

SerthVarnee fucked around with this message at 07:28 on Oct 26, 2023

SerthVarnee
Mar 13, 2011

It has been two zero days since last incident.
Big Super Slapstick Hunk
Steam autumn sale is on
And yep, not healthy for people like me
Again.
Interestingly enough, Steam doesn't have any support sections that cover the Steam Store. If you contact their support department, all they can do is apologize and send an email to their marketing department, which apparently did nothing.

Powerful Two-Hander
Mar 10, 2004

Mods please change my name to "Tooter Skeleton" TIA.


That doesn't surprise me at all tbh. Is there an option anywhere to disable autoplay of store adverts?

I've been more aware of things like this despite not being photosensitive, for instance there are two buildings I walk past fairly regularly where the external lights have been broken and flickering for a ridiculous amount of time. One thing I also noticed (because it happened in my house) is that incorrectly selected dimmers can create huge flickering in LED bulbs if types are mixed on a circuit, though that's less likely if your switches weren't wired by clowns.

I get to go on Lacosamide to see if that gets the last of the infrequent seizures to stop seeing as upping lamotrigine hasn't and has messed my sleep up. Don't know if I'll be on both or bring the lamotrigine down to zero, that'll take ages as it's 25mg in two week reductions so every 50mg takes two months. That means 6 months of going down while waiting to see if the seizures come back with only Lacosamide.

SerthVarnee
Mar 13, 2011

It has been two zero days since last incident.
Big Super Slapstick Hunk
I hope the new meds work out for you.

That distant relative of mine (I've mentioned her a couple of times before, she has about a 10% chance of dying with each seizure due to her lizard brain threatening to just shut itself off each time) has been put on some heavy dosages of epilepsy meds and the side effects for her include, but are not limited to, paranoid schizophrenia.
Her seizures are so severe and so life-threatening that the doctors don't dare switch out her meds for something with milder side effects.
So she is just going to have to live with it.

Compared to that kind of quality of life wreaking bullshit, I'm quite happy with the nightmares.

Powerful Two-Hander
Mar 10, 2004

Mods please change my name to "Tooter Skeleton" TIA.


Yeah well that probably puts my reading of the side effects of Lacosamide including "caution while drinking alcohol" and going "oh what this sucks" in perspective, because I probably enjoy drinking too much, if I'm honest. I think though this is because of the potential dizziness side effect as there's no "do not do this!" Listed anywhere

Anyway, that's terrifying and I cannot imagine living with it.

What is also kind of funny is that in looking at people's experience on Reddit (lol), there are people going "I fall over/get worse hangovers/get dehydrated and have seizures" and then others going "I get absolutely smashed twice a week and it's fine", I guess it's a land of contrasts!

e: I hate the fact that the only way to know if any of this works is to just wait and see, possibly for months.

Powerful Two-Hander
Mar 10, 2004

Mods please change my name to "Tooter Skeleton" TIA.


I am of course going to trip report this in true goon style.

Probably just as well I'm no longer in basically any point in my life from 18 until my mid 30s where I was getting hammered a minimum of two times a week.

SerthVarnee
Mar 13, 2011

It has been two zero days since last incident.
Big Super Slapstick Hunk
I've never understood people's fondness for drinking themselves unconscious.

If I want to wake up somewhere else sporting a massive hangover and the general appearance of having either recently died or being about to do so, I'd just have myself a seizure.

Super convenient, doesn't have an age limitation, also prohibits me from driving and is far cheaper.

Powerful Two-Hander
Mar 10, 2004

Mods please change my name to "Tooter Skeleton" TIA.


Societal conditioning I think. For millennials in the UK, drinking was basically what you did as soon as you could, then university was almost advertised as an excuse to drink heavily and frequently.

Then it was probably 50/50 if you carried on doing that (to some extent) and I went to work in an area that had a big drinking culture as well. This is changing though apparently, and young people drink less on average. That's probably because it's so expensive though and they all take nitrous instead.

Anyway I don't do all of that anymore, these days I'm more of a middle aged habitual drinker. Just like the other millennials!

e: I do not necessarily endorse this behaviour! It'll probably do me some good to cut down a bit.

Powerful Two-Hander fucked around with this message at 18:57 on Nov 25, 2023

Powerful Two-Hander
Mar 10, 2004

Mods please change my name to "Tooter Skeleton" TIA.


Lacosamide week one (well, 6 days I guess)trip report: some nausea (I think), irritability which is a rare one but I got it with lamotrigine (well, that was more like rage) so kind of makes sense, and dry mouth which I absolutely hate and sucks. At least it's not falling over or double visions and I had two beers without falling over :toot:

I had a half asleep seizure as well, but medication adjustment can do that, particularly if it fucks with your sleep, and I'm only up to half dose.

e: also tiredness which makes the irritability worse, cool. I hope this wears off in the next couple of weeks like it did with lamotrigine

Powerful Two-Hander fucked around with this message at 15:50 on Dec 2, 2023

Powerful Two-Hander
Mar 10, 2004

Mods please change my name to "Tooter Skeleton" TIA.


Alright the dry mouth and tiredness wore off, I had like three more seizures at the weekend though, but none the last couple of days so fingers crossed that was just a new medication blip. I go up to 100mg X2 next Monday, hopefully that doesn't cause the same stuff.

SerthVarnee
Mar 13, 2011

It has been two zero days since last incident.
Big Super Slapstick Hunk
Ah December. The season of joy, snow, family, panicky shopping, advertisements and all the blinking lights you could possibly fit on your house.

I've started to adjust my dog-walking routes based on which blinged out house makes it impossible for me to walk past it without medication.

Oh and the snow plows all have blinking lights that try really really hard to get that "strobe" speed.

Powerful Two-Hander
Mar 10, 2004

Mods please change my name to "Tooter Skeleton" TIA.


Powerful Two-Hander posted:

Alright the dry mouth and tiredness wore off, I had like three more seizures at the weekend though, but none the last couple of days so fingers crossed that was just a new medication blip. I go up to 100mg X2 next Monday, hopefully that doesn't cause the same stuff.

Switch up to 100mg twice a day was nowhere near as bad, just the tiredness I think.

Now I get to titrate down lamotrigine to 100mg twice a day and see what that does, hopefully stop me sleeping badly and having wild dreams! Not gonna start that until January though, new year, new you etc.

Powerful Two-Hander
Mar 10, 2004

Mods please change my name to "Tooter Skeleton" TIA.


I was mildly panicking that the Lacosamide wasn't working as I got another blast of extreme tiredness (like, absolutely wide awake to exhausted to asleep in the space of a couple of minutes at Ike 6pm) and a mini seizure, but then I remembered I have only been on the increased dose for 10 days and it just feels longer because of the time of year so fingers crossed that's just a side effect of increasing the dose.

Anyway, turns out my mother has been telling people I have epilepsy, which I don't mind at all except that she's been saying more or less "something wrong with his brain" so I had various relatives asking "so what's going on with this.....thing".

SerthVarnee
Mar 13, 2011

It has been two zero days since last incident.
Big Super Slapstick Hunk
I mean...it's not wrong...but it might have been smarter to have phrased it differently.

Powerful Two-Hander
Mar 10, 2004

Mods please change my name to "Tooter Skeleton" TIA.


SerthVarnee posted:

I mean...it's not wrong...but it might have been smarter to have phrased it differently.

Quite. Same thing happened with my dad telling me stepsister, she was like "so what is going on because I was told you can't drive anymore because of something but I don't know what". She probably thought I was drink driving and got banned or something.

SerthVarnee
Mar 13, 2011

It has been two zero days since last incident.
Big Super Slapstick Hunk
Does your family only communicate in vague, unfinished

SerthVarnee
Mar 13, 2011

It has been two zero days since last incident.
Big Super Slapstick Hunk
Goddamn the internet just comes out swinging at you sometimes.

The gif thread is one of those minefields I irresponsibly keep going back to, even though this isn't the first time they've cause me issues.

I don't know what the lore is behind this "Gooncam" thing, but holy poo poo that felt like getting straight up punched in my right eye.

Hel
Oct 9, 2012

Jokatgulm is tedium.
Jokatgulm is pain.
Jokatgulm is suffering.

SerthVarnee posted:

Goddamn the internet just comes out swinging at you sometimes.

The gif thread is one of those minefields I irresponsibly keep going back to, even though this isn't the first time they've cause me issues.

I don't know what the lore is behind this "Gooncam" thing, but holy poo poo that felt like getting straight up punched in my right eye.

Gooncam is just a goon modified version of Gifcam, a program for recording your screen straight to gifs. So the problem is still whatever source they recorded from.

SerthVarnee
Mar 13, 2011

It has been two zero days since last incident.
Big Super Slapstick Hunk
Ah. Well in that case, I have no clue what the original creators of that abomination was thinking, but at least I got another blog post out of it and a nice unscheduled stress test of my current dosage of meds. (They held up to the test fortunately).

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Powerful Two-Hander
Mar 10, 2004

Mods please change my name to "Tooter Skeleton" TIA.


SerthVarnee posted:

Does your family only communicate in vague, unfinished

Pretty much ye

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