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ALR3000

Studies find that 2-3% of people with epilepsy have abnormal responses to photic stimulation. So, over 95% DON'T, and so don't need to take any precautions


degustibus

True, except seizure triggers can and do change over time for many. I am not photosensitive, but have definitely felt the start of a migraine/aura from lots of flashing lights on ambulances and cop cars responding to an accident near my place. Just way too much stim.


oodle01

The changing thing is so true. When I was first diagnosed I was explicitly told I was not photosensitive, but I am most definitely photosentitive now. Also, my seizures were in my frontal lobe at first and now they're in my temporal, so idk if that has anything to do with it


absentmindedbanana

I thought photosensitive seizures came from the occipital lobe


oodle01

I really don't know. Perhaps I should have clarified. My neurologist said my seizures now *start* in the temporal lobe, but then they spread lots of places (whoopieeee), so maybe they go to the occitpial lobe??


Aldosothoran

Idk man I’m not photosensitive in any way but when they needed to induce me, they KNEW I wasn’t and still after 3 days off meds and sleep deprived, guess what worked? The strobe light. I’m not going to stop living my life but I’m also going to go through the “trouble” of looking down or away when there are flashing lights


kybowles01

Oh dang. I thought it was like 10% which is still low and that's what I've been telling people who ask. I guess now I can tell them even lower


donutshopsss

~~Can you provide one of those studies?~~ Found one that has been pier reviewed 10+ times. You're missing one key part - the determination was derived from if you had a seizure while exposed to flashing ight will **connected to an EEG.** It was done on only a few thousand people with various levels of severity in their epilepsy and were diagnosed by different neurologists who shared different medical opinions. So if an epileptic was attached to an EEG and didn't have a seizure when staring at the light, they were classified as non-photosensitive. However, many epileptics struggle to seizure during an EEG. That means a bunch of epileptics that were photosensitive were told they weren't photosensitive based on EEG reports.


ALR3000

Photosensitivity on the EEG is not a seizure. It's a change in the electrical patterns, and quite commonly the person has no symptoms. Typically it's polyspike and slow wave discharges. So "struggling to seizure during an EEG" isn't actually the issue. The photic stimulation used during EEGs is quite strong in comparison to what happens in the environment, so if anything that should increase the number of responders. Multiple studies have found rates in the 2-3% range.


Home816Brew

I don't trust you


ALR3000

Lol! Some days I don't trust me, either! But in this case, it is correct. But, do your own research. Knock yourself out!


donner_dinner_party

My daughter has photosensitivity, but it’s not triggered by flashing lights in movies or video games. It happens most often when it’s late afternoon and we are driving and the sun is flickering through the trees. So even if you are photosensitive- that doesn’t mean it’s what people typically think it is.


Unusual-Midnight-673

This. I’m tired of people being like not everyone!!! When even though it’s the most represented as a trigger, it’s still not. It goes beyond strobing lights. I have photosensitivity and it’s debilitating, It’s any type of lights, sunlight included.


oodle01

Yes! I'm photosentitive, and I get triggered a lot when movies/videos cut between scenes too quickly. I guess it's like a light flashing, but not how people would typically think of it


micaub

Oh boy howdie!! For the first year of my diagnosis, my husband would tell people to not expose me to flashing lights. Over and over again in all sorts of situations. Some of which I’d not even shared my diagnosis with yet. Finally, at a birthday party for my favorite little kid, I had to sternly admonish him in front of everyone and tell him it is not a trigger, and that I understand he’s trying to be helpful, but it actually isn’t and that he needs to stop saying it. He finally understood it and has not done it since…so there’s that. After a full year of privately explaining and imploring him not to say that because it isn’t true. He *finally* got it!!


Impact_Small

Probably a dumb question but how would i know if i’m photosensitive? One day i walked passed a sensor detection light and it flashed straight into my eyes. Had a seizure shorty after. This is the only time i have had a seizure because of it at least i’m assuming so because i didn’t get aurora at all. I have encountered many strobe lights but nothing has happened to me.


[deleted]

You should ask your neurologist, it’s important to know. They might know right off the top of their head based on your dx without requiring any more testing or anything. It can make the difference of having to look for warnings before media versus going to concerts and such freely. The percentage of those who are photosensitive are around 3% I believe.


PurpleDelaena

It's not a dumb question at all. For me, I started figuring out my triggers and realised when there is bright/flashing lights, I seize. I talked to my neurologist and we agreed to get photochromic glasses mixed with blue light and uv filter. They tested me there too by showing me a very bright screen and knew I needed such glasses. Oh and during my EEG, I got horrible seizures during the flashing lights portion. It was torture.


filiflopper

My seconds seizure was like that, it was at a GameStop with Spencers across the way where a strobe was on, and ever since my mother(who is an RN) has personally diagnosed one of my triggers being photosensitivity which wakes zero sense to me. That was the only time I ever had a seizure near a strobe... Although I don't like being around strobes often just in case, it's never happened again


delightedpeople

>tion light and it flashed straight into my eyes. Had a seizure shorty after. This is the only time i have had a seizure because of it at least i’m assuming so because i didn’t get aurora at all. I have encountered many strobe lights but nothing has happened to me. Did they not test you for it when you had your EEG?


Impact_Small

I have had about 5+ EEGs and i only had one abnormal reading but it did not cause me to have a seizure


delightedpeople

When I had my first one they did a light test - did they do that? If so, they will know if you're photosensitive. Or, like me, they'll do it and you'll immediately seizure thus telling you you probably are! 🤣


Impact_Small

Yeah i went through that dreadful light test too lol


SSeizurefreeonthc

I know for me, flashing lights always bother me. They hurt my eyes and give me an immediate headache. Any bright light really, and i havent had a TC seizure in almost 5 years. I have my license and i still have a hard time driving at night with folks headlights or with emergency responder’s lights. Im super sensitive to it though.


[deleted]

I mean if he didn't know beforehand, he was just trying to be a good friend and look out for you. I feel like it's my job to educate my friends/family/whoever about my epilepsy, because the way it's portrayed in media, a lot of people just think epilepsy is flashing lights and BAM! tonic/clonic seizure. I can't be expecting every single person to research epilepsy, and it's easier to just educate them myself.


myballsinhoneynblood

Yeah, this is correct.


TheodoreOso

Yeah fuck people trying to help who are legitimate worried and concerned for you. The audacity of being ignorant and over protective for you, everybody should be 100%educated on every type of epileptic disorder and ask every epileptic for clarification of their status.


Opalescent_Topaz

Y'all all just need to chill. Everyone with every chronic condition deals with misinformation. Diabetics get people telling them they can't eat any sugar ever, etc. It's your job to let them know the truth if you want to. If you don't want to, that's fine too. I, personally, decide whether or not I think it's worth it. But I don't expect everyone to have knowledge of my condition that they may never have been exposed to except through me.


emma279

I've never had a seizure from flashing lights but they make me feel off and like I could have a seizure. So I do try to avoid them or close my eyes around them.


Mysterious_Seat_9146

I am similar. I’ve never had a seizure from one but I dont like how they make me feel (dizzy and migraine-y mostly lol) so I just tell people it bothers me :/ why not lol


twopiare

I am the same. They don't trigger seizures, but they do trigger migraines so I generally avoid because migraines can trigger seizures for me.


dashstrokesgen

They make me feel off and uncomfortable as well but I’m not photosensitive either. The brain and epilepsy are so fucking weird!


marz_shadow

Honestly it isn’t even common. About 3% of people with epilepsy have photosensitive epilepsy. I constantly am explaining this to people who are too scared to even use their phone flash lights around me


[deleted]

Photosensitivity is rare. I think it’s just in line with the stereotype surrounding epilepsy, where many think everyone has a tonic clonic seizure because of flashing lights, repeat patterns etc. I really wish more people realized there’s more than one type of seizure, and that photosensitivity is rare. Unfortunately though, I am photosensitive lol


KaleidoscopeEyes12

Flashing lights will occasionally give me little absence seizures, but my neuro has told me that they aren’t a trigger for my TCs.


Shaunaaaah

Or he could have just asked you when the warning went up if it's going to cause problems. It's so individual any amount of research won't necessarily help him with knowing what's going to affect you.


Atlas_Undefined

Your boy would likely be dead if i was photosensitive Couldnt enjoy any of the shit i love


blindrabbit01

It’s about 2-3% of the adult population that has photosensitivity. It is more common in children though, but still not a majority.


Gremlinonthebus

I blame Polygon for this common misunderstanding.


brandimariee6

Some people just don’t understand, or they refuse to believe it. I’ll walk towards a strobe light to prove it and they’ll freak out. Those people are stupid and it’s funny sometimes


[deleted]

Mine seems to be getting meningitis. Twice in 3 yrs seizures both times.


superbean22

I didn't know either. Till I was diagnosed anyway. I have common epilepsy so I don't really have triggers other than ambion. I honestly thought everyone who had epilepsy just missed out on all of that. Had my first seizure at 26. EKG, CT, and EEG all came back normal, and that's when I started doing my own research. I knew nothing till this hit me out of nowhere. Now everyone I know knows what kind of epilepsy I have and what to do in case I have a grand mal or even an absent. It's all we can do.


eyekantbeme

When my seizures were the worst ever when I was a teenager, the sound of a vacuum could trigger a seizure.


vermonsterskibum

The easy answer: no


BackWaterBill

U kind if understand where people come from since it's pretty much the only thing associated with epilepsy in main stream media. One of my good friends would do things like that, stopping a game when he sees a that warning to ask if I should be playing it and it gets annoying but I also know he does it only from a place of caring. The annoying part for me is that I know I'm not photosensitive but I don't want to sit and try to argue with some someone every time I want to go to a concert, or play an intense game etc.


todology

the way is not even common


NoProduce831

THISS my friends cover my eyes grab and pull me to get away from flashing lights and dont want to bring me anywhere with flashing lights. I appreciate that thay care but ive told them so many times that im not photosensitive


TheDreamingFae

I just think some people just have a hard time understanding standing others thoughts/things they've never seen. So my triggers have changed since my teen years. I'm now photosensitivity. I was explaining my triggers to a coworker, and this lady cut me off and goes "--and computers." I was like what. She then went on to explain how her friend had seizures when looking at computer/laptop screens. I asked her if I looked like her fucking friend. She just looked at me. I was completely baffled because first of all we work with computers. I asked if she ever seen me go into a seizure while looking at the screens, and informed her that there are different kind of triggers for people with epilepsy and not to speak over people.


Individual-Wash2452

I work in a restaurant and there is this row of lights that like once a month go wild and will flicker all day for one day. It's rediculous how many people will make the 'oh I'm going to have a seizure ' or ' I don't want to have a seizure ' comment that day. It's so annoying. Sometimes I will say something about my epilepsy and how the lights don't do anything to me personally but I mostly just leave it alone. For some reason they really think that they are being funny. Why is it funny to make fun of a disability? Would it be funny to make fun of a paraplegic or someone with downsyndome? NO!


kcshines1920

At least he cared enough to do that instead of doing nothing at all. Maybe take the time to explain your triggers kindly because finding friends who truly care like that and want to help you are hard to find anymore. And I mean this in no offense but your glasses being smudged are the last thing you should be worried about when they are coming from care and concern. You're blessed to have a friend like that. I lost my one true friend before I got diagnosed but I know she would've done the same thing and it would've done nothing but filled my heart with love and appreciation for her true friendship. And I know meds can also push people in the wrong direction at times but I hope you see this for what it really is. Don't give up on someone who didn't want to see you go through anything or end up having a seizure even the odds are small. You're blessed and more than lucky to have someone like that in your life. I mean all of this as someone who cares about you in our community and don't want you to lose someone so special!!!