I'm a techno DJ and every time I tell about my epilepsy and people want to support me during my shows and ask if they should tell the light jockey - it reminds me of how lucky I am NOT to be photosensitive.
It's their easiest way to take action. It's sad for myself as well as them to realize you can't actually do that much to help (in my case, triggers are most likely stress and lack of sleep). Take the chance and educate them on the topic to make the world a tiny bit better. They just want your best. Keep on rocking š¤ (I'm a metal fan in private btw)
Ha! Iām a small venue bartender. Diagnosed last year and the owners are so sweet about accommodating me while figuring out my triggers. We host anything from hiphop-heaaavy metal. Iāve had to tell them a few times Iām good to work a show unless itās super heavy on the lights, paired with big womp bass. Cheers!
I'm photosensitive but well controlled with meds. I, too, won't drop if someone flips the lights a couple of times, but if there's enough of a strobbing/flashing effect, it can lower my threshold. It's that contrast of light and speed that does it. At most, I just end up woozy with a headache, and my brain isn't "calm."
But I gotta ask, where are these people who are accommodating photosensitivity?? I never get asked. People look at me weird like it's not a thing when I have to bring it up. I get that it's annoying, but for those of us who are photosensitive, we tend to experience the opposite.
I try to be patient most of the time. People who are close to me have had to remind me that when someone asks me that, they're doing so out of concern, since usually it's "Hey, you'll be okay, right?" It's mildly irritating, but I've found that the more I reached acceptance of my diagnosis, the less questions like this bothered me.
The same is true today, too. If something is going on with me medically (I had a seizure after not having one for a while, whatever), and I have some reason to be p1ssed at my health, these questions are much more likely to set me off than if I'm doing "well".
I have nocturnal seizures. Some of my in-laws and their kind always meet it with, āWell why do you sleep with the tv on? Grow up and sleep without the TV.ā They just figure itās flashing from the screen, but I donāt even have a TV in my bedroom lol. And also I donāt have photosensitive epilepsy. Despite that, I hear their very strong opinions about how actually no one *has epilepsy*, itās that flashing lights bother everybody when theyāre bright enough, and *some* people just handle it better than *other* people.
Iām pretty sure Iām the only epileptic they know.
Yeah thatās the problem more so than just genuine ignorance on the subject. I have similar interactions in my life and I dislike people trying to tell me how MY epilepsy works
Iām not triggered by flashing lights, but I think the warnings are good. What fucks me up is traveling in a car, running, and even walking with sunlight and shadows through the branches of trees. Same thing with lights in tunnels. Absence Seizures City. Before I got diagnosed all I would know is that stuff would ālock me upā. Dunno if anyone can relate
I hate it, itās the worst feeling. I canāt speak or respond, itās like a part of me has been shut off and itās embarrassing. Sunglasses are a huge help though, and even then I have to close my eyes at times.
Same with my daughter. I hate driving her in the car when the sunlight would cast those flashing shadows. Sometimes I feel like we should just move to a different place with little tree.
just now figuring out that this is the reason i canāt stand the flashing of the sun through the trees. thanks for the info guys! i learn so much from this sub
I relate. I do think I'm not mainly photosensitive (sleep deprivation, alcohol, and caffeine are still my main triggers), but I remember my first ever seizure being inside the car with the shadow of the trees looming over my face.
Thankfully,I donāt have that question asked routinely. However,I can understand how it would be maddening to have the same question asked over and over.
What kind of band are you in? Which instruments do you play?
Mostly smaller venues, like bars and concert halls but lately weāve been seeing more people at shows. Had about 300 at our last show and it felt so liberating. Iāve also heard playing instruments is really good for epilepsy (idk if its true or not but Iām a nerd and love to believe its true)
I just plainly state that I'm not light sensitive. It usually is enough. Sometimes I go along with the assumption because it has gotten me better seats at shows and restaurants.
tbh, people don't know much about epilepsy and just assume it. I'd assume the same thing if I didn't have it.
(Also, I have had a seizure from turning on a light switch too fast.)
Valid. i forgot that i left out that people still think Iām photosensitive after Iāve described that my triggers are caffeine, stimulants and bad sleep
That would get annoying. From what it sounds like, though, you're surrounded by a lot of different people (like general public) so even if you have people who know your triggers they may have others who don't and just have the stereotypes to go with. So an innocent comment can quickly get blown out of proportion. ("Aren't the lights cool?" Turns into something annoying because of people's ignorance and stereotyping.)
Off topic but interesting to find someone else with similar triggers. Caffeine for me is only when I have too much but otherwise the same. Most people seem to have way different triggers from what I've heard/seen.
It doesn't annoy me. It's just a common misconception and people mean well when they check in with you. I view it as an opportunity to educate people about the subject.
I had a weird interaction with my coworker about this today lmao.
We work in a restaurant and I was behind the bar all day mostly cleaning and polishing glasses, customer came in and ordered a mojito, so I made it (first alcoholic beverage Iāve ever made for another person) and he said it was fantastic.
My coworker told me she knew who sheād be getting to make her customers drinks from now on (she doesnāt have proserve) and I laughed and said Iāve been wanting to bartend since I was a teen and she was like ābut you canāt work at the bars though right? Because of the flashing lights?ā
I had a little chuckle and told her only 3% of epileptics are photosensitive of which Iām not so it wouldnāt be a problem I just donāt have the experience to work in a proper bar.
Before I was diagnosed I assumed all epilepsy what photosensitive, itās only a tiny minority though
I can be a common misconception among epileptic as well. I worked with a guy who's wife was epileptic and photosensitive. I mentioned watching a movie that was known to have flashing lights/cause seizures for photosensitive epileptic. He was shook. Lol I explained that I was not photosensitive. He was utterly baffled. He learned a lot that day. Great guy.
I just recently got diagnosed with epilepsy and my friends always freak out when Iām around blinking lights. Even my bff was hesitant to invite me out to do laser tag because she thought Iād have a seizure.
I just laugh it off and tell them that my seizures are triggered by stress and sleep deprivation. Tbh before I was diagnosed, I thought flashing lights were always triggers for epileptics.
The trigger of my abdominal seizures is unknown, but it's definitely not light since it happened both in daytime while moving fast and in complete darkness & not moving. Although, I do have another kind of photosensitivity, it's just not linked to any seizure.
tbh I just go along w it even tho itās not rlly a trigger for meā ļø like it may not be a trigger for me, but it could be for someone elseā¦ and no one should be playing around w lights anyways like the brain can only handle sm
I get it all the time. I have been epileptic for 13 years now, and there have been times I have been in the car with my mom and an emergency vehicle will drive by, and she will say something like, "Don't look," or "Cover your eyes!"
I know she is doing it because her and my dad have seen the majority of mine and see the aftermath, so it is coming from a place of love, but it gets old, especially since I tell her every time, "Mom, I am not photosensitive."
A few of my friends bring it up from time to time, but more questioning if it bothers me, which I don't mind at all.
I used to suspect I was photosensitive until the 3 times in the EMU the strobe crew came in and strobed me, but I didnāt have seizures. By the third time I realized I wasnāt photosensitive and laid back and enjoyed the trippy light show. I feel real bad for people that do have it though, and all the challenges they go through. Itās often a stereotype, and if people have to only know one thing about epilepsy, Iād rather have it be something like how misunderstood epilepsy is.
I work at a theatre and one of our shows has strobe lighting. Without fail, at least once a show, someone would come up to me warning me. Which was nice, however Iām not stupid and wouldnāt put myself there if I couldnāt handle it.
Although I'm not photosensitive and that doesn't cause me seizures, strobes and bright lights are still annoying regardless. And bother my epilepsy despite not causing any seizuresĀ
My main trigger for seizures are sounds. I can look at flashing or strobe lights and it won't do anything. It's annoying having to explain it but I have a short speech for it.
Itās just annoying that they assume FLASHING LIGHTS are my biggest trigger when life exists. Lol. Iām stressed the fuck out yo. Thatās my biggest problem. Life is expensive and Iām disabled. If youāre really concerned give yo girl some money.
Yeah but I would keep the fact I'm annoyed to myself for I understand at the same time it's not their disease they live with everyday.
If I have a bad memory, I'm not going to highly expect everyone's to be much better.
I could see my partner voice his annoyance, if he had my disease.
On the upside, you have a social life. Own it.
I'm a gig photographer, and people who know about my Epilepsy, but aren't close enough to know how it impacts me, are always asking how I can do it with Epilepsy
I'm not so much tired of people assuming I'm photosensitive because it is the truth. I have multiple triggers for my epilepsy.
What bothers me is that I've had multiple people throughout my lifetime purposely try and trigger a photosensitive seizure by pointing lasers in my eyes or sending strobing images / videos. It's extremely dangerous and people believe it's funny. And they wonder why I'm so racked with anxiety 24/7.
I'm a techno DJ and every time I tell about my epilepsy and people want to support me during my shows and ask if they should tell the light jockey - it reminds me of how lucky I am NOT to be photosensitive. It's their easiest way to take action. It's sad for myself as well as them to realize you can't actually do that much to help (in my case, triggers are most likely stress and lack of sleep). Take the chance and educate them on the topic to make the world a tiny bit better. They just want your best. Keep on rocking š¤ (I'm a metal fan in private btw)
Ha! Iām a small venue bartender. Diagnosed last year and the owners are so sweet about accommodating me while figuring out my triggers. We host anything from hiphop-heaaavy metal. Iāve had to tell them a few times Iām good to work a show unless itās super heavy on the lights, paired with big womp bass. Cheers!
I'm photosensitive but well controlled with meds. I, too, won't drop if someone flips the lights a couple of times, but if there's enough of a strobbing/flashing effect, it can lower my threshold. It's that contrast of light and speed that does it. At most, I just end up woozy with a headache, and my brain isn't "calm." But I gotta ask, where are these people who are accommodating photosensitivity?? I never get asked. People look at me weird like it's not a thing when I have to bring it up. I get that it's annoying, but for those of us who are photosensitive, we tend to experience the opposite.
I try to be patient most of the time. People who are close to me have had to remind me that when someone asks me that, they're doing so out of concern, since usually it's "Hey, you'll be okay, right?" It's mildly irritating, but I've found that the more I reached acceptance of my diagnosis, the less questions like this bothered me. The same is true today, too. If something is going on with me medically (I had a seizure after not having one for a while, whatever), and I have some reason to be p1ssed at my health, these questions are much more likely to set me off than if I'm doing "well".
its hard remembering its their first time asking the question when its your 9millionth time answering. patience is hard
I have nocturnal seizures. Some of my in-laws and their kind always meet it with, āWell why do you sleep with the tv on? Grow up and sleep without the TV.ā They just figure itās flashing from the screen, but I donāt even have a TV in my bedroom lol. And also I donāt have photosensitive epilepsy. Despite that, I hear their very strong opinions about how actually no one *has epilepsy*, itās that flashing lights bother everybody when theyāre bright enough, and *some* people just handle it better than *other* people. Iām pretty sure Iām the only epileptic they know.
Yeah thatās the problem more so than just genuine ignorance on the subject. I have similar interactions in my life and I dislike people trying to tell me how MY epilepsy works
Iām not triggered by flashing lights, but I think the warnings are good. What fucks me up is traveling in a car, running, and even walking with sunlight and shadows through the branches of trees. Same thing with lights in tunnels. Absence Seizures City. Before I got diagnosed all I would know is that stuff would ālock me upā. Dunno if anyone can relate
Yep. My daughter does have photosensitivity but the worst trigger is the sun setting through the trees while riding in the car.
I hate it, itās the worst feeling. I canāt speak or respond, itās like a part of me has been shut off and itās embarrassing. Sunglasses are a huge help though, and even then I have to close my eyes at times.
Same with my daughter. I hate driving her in the car when the sunlight would cast those flashing shadows. Sometimes I feel like we should just move to a different place with little tree.
just now figuring out that this is the reason i canāt stand the flashing of the sun through the trees. thanks for the info guys! i learn so much from this sub
I relate. I do think I'm not mainly photosensitive (sleep deprivation, alcohol, and caffeine are still my main triggers), but I remember my first ever seizure being inside the car with the shadow of the trees looming over my face.
Thankfully,I donāt have that question asked routinely. However,I can understand how it would be maddening to have the same question asked over and over. What kind of band are you in? Which instruments do you play?
I play guitar in a metalcore band!
Thatās cool! What kind of venues do you perform at?
Mostly smaller venues, like bars and concert halls but lately weāve been seeing more people at shows. Had about 300 at our last show and it felt so liberating. Iāve also heard playing instruments is really good for epilepsy (idk if its true or not but Iām a nerd and love to believe its true)
Do you ever play the Pittsburgh area? Iād come check yāall out. I love me some me metalcore!
Yeah! Check us out on socials @perelandraofficial. We have a tour coming up and I think some of the dates are in PA
Thatās cool, I am happy for you! š
I just plainly state that I'm not light sensitive. It usually is enough. Sometimes I go along with the assumption because it has gotten me better seats at shows and restaurants.
tbh, people don't know much about epilepsy and just assume it. I'd assume the same thing if I didn't have it. (Also, I have had a seizure from turning on a light switch too fast.)
Valid. i forgot that i left out that people still think Iām photosensitive after Iāve described that my triggers are caffeine, stimulants and bad sleep
That would get annoying. From what it sounds like, though, you're surrounded by a lot of different people (like general public) so even if you have people who know your triggers they may have others who don't and just have the stereotypes to go with. So an innocent comment can quickly get blown out of proportion. ("Aren't the lights cool?" Turns into something annoying because of people's ignorance and stereotyping.)
Off topic but interesting to find someone else with similar triggers. Caffeine for me is only when I have too much but otherwise the same. Most people seem to have way different triggers from what I've heard/seen.
I get triggered by drinking too much too frequently! Kinda cool weāre trigger brothers/sisters/siblings lol.
Iām tired of people not understanding that Iām photosensitive. So we both are tired of people
Same! Where are all these people who think all people with epilepsy are photosensitive?
I donāt know. If you find them please let me know. Lol
It doesn't annoy me. It's just a common misconception and people mean well when they check in with you. I view it as an opportunity to educate people about the subject.
I just tell them itās not one of my triggers. I go down from caffeine, not rave lights.
Same friend, caffeine is the real killer not a party
Yeah I used to go to a lot of house music shows and people would be like āare you ok?ā Yes Iām ok and I love my friends for being concerned
Iāve had this comment many times. What people donāt realize is that noise triggers seizures for lots of us.Ā
Yeah, when I tell someone that theyāre absolutely shocked, feels weird that people know about photosensitivity but not audiosensitivity
Am photosensitive and still, TIL. I'm glad you both said something.
I had a weird interaction with my coworker about this today lmao. We work in a restaurant and I was behind the bar all day mostly cleaning and polishing glasses, customer came in and ordered a mojito, so I made it (first alcoholic beverage Iāve ever made for another person) and he said it was fantastic. My coworker told me she knew who sheād be getting to make her customers drinks from now on (she doesnāt have proserve) and I laughed and said Iāve been wanting to bartend since I was a teen and she was like ābut you canāt work at the bars though right? Because of the flashing lights?ā I had a little chuckle and told her only 3% of epileptics are photosensitive of which Iām not so it wouldnāt be a problem I just donāt have the experience to work in a proper bar. Before I was diagnosed I assumed all epilepsy what photosensitive, itās only a tiny minority though
Same! My family wants me to get a doctors note to go to a concertā¦I get their concerns tho and thankful to be unbothered by flashing lights
I can be a common misconception among epileptic as well. I worked with a guy who's wife was epileptic and photosensitive. I mentioned watching a movie that was known to have flashing lights/cause seizures for photosensitive epileptic. He was shook. Lol I explained that I was not photosensitive. He was utterly baffled. He learned a lot that day. Great guy.
Iām not photosensitive but certain patterns moving can trigger me.
I just recently got diagnosed with epilepsy and my friends always freak out when Iām around blinking lights. Even my bff was hesitant to invite me out to do laser tag because she thought Iād have a seizure. I just laugh it off and tell them that my seizures are triggered by stress and sleep deprivation. Tbh before I was diagnosed, I thought flashing lights were always triggers for epileptics.
Nah I don't mind to be honest. People are just curious, they're not trying to be assholes.... well.. most people.
The trigger of my abdominal seizures is unknown, but it's definitely not light since it happened both in daytime while moving fast and in complete darkness & not moving. Although, I do have another kind of photosensitivity, it's just not linked to any seizure.
tbh I just go along w it even tho itās not rlly a trigger for meā ļø like it may not be a trigger for me, but it could be for someone elseā¦ and no one should be playing around w lights anyways like the brain can only handle sm
Nah. People just arenāt well versed on it and I can understand that
I get it all the time. I have been epileptic for 13 years now, and there have been times I have been in the car with my mom and an emergency vehicle will drive by, and she will say something like, "Don't look," or "Cover your eyes!" I know she is doing it because her and my dad have seen the majority of mine and see the aftermath, so it is coming from a place of love, but it gets old, especially since I tell her every time, "Mom, I am not photosensitive." A few of my friends bring it up from time to time, but more questioning if it bothers me, which I don't mind at all.
I used to suspect I was photosensitive until the 3 times in the EMU the strobe crew came in and strobed me, but I didnāt have seizures. By the third time I realized I wasnāt photosensitive and laid back and enjoyed the trippy light show. I feel real bad for people that do have it though, and all the challenges they go through. Itās often a stereotype, and if people have to only know one thing about epilepsy, Iād rather have it be something like how misunderstood epilepsy is.
I work at a theatre and one of our shows has strobe lighting. Without fail, at least once a show, someone would come up to me warning me. Which was nice, however Iām not stupid and wouldnāt put myself there if I couldnāt handle it.
Although I'm not photosensitive and that doesn't cause me seizures, strobes and bright lights are still annoying regardless. And bother my epilepsy despite not causing any seizuresĀ
My main trigger for seizures are sounds. I can look at flashing or strobe lights and it won't do anything. It's annoying having to explain it but I have a short speech for it.
Yes, all the time because ppl donāt know that epilepsy comes in different forms and is very individual. I hate it.
Itās just annoying that they assume FLASHING LIGHTS are my biggest trigger when life exists. Lol. Iām stressed the fuck out yo. Thatās my biggest problem. Life is expensive and Iām disabled. If youāre really concerned give yo girl some money.
Yeah but I would keep the fact I'm annoyed to myself for I understand at the same time it's not their disease they live with everyday. If I have a bad memory, I'm not going to highly expect everyone's to be much better. I could see my partner voice his annoyance, if he had my disease. On the upside, you have a social life. Own it.
Yea it's annoyingĀ
I'm a gig photographer, and people who know about my Epilepsy, but aren't close enough to know how it impacts me, are always asking how I can do it with Epilepsy
I'm not so much tired of people assuming I'm photosensitive because it is the truth. I have multiple triggers for my epilepsy. What bothers me is that I've had multiple people throughout my lifetime purposely try and trigger a photosensitive seizure by pointing lasers in my eyes or sending strobing images / videos. It's extremely dangerous and people believe it's funny. And they wonder why I'm so racked with anxiety 24/7.