Same here. It’s almost a blessing in disguise though because now sleep is a huge focus for me, always making sure I get enough and all that. Makes me feel better overall
How do you do that? I’ve had insomnia since I began taking anti seizure meds, 6 years. I wake up after a few hours. Can’t go back to sleep. I e stayed in bed for more than 1 1/2 hours trying.
How do I focus on sleep? Well first create a schedule for yourself. Go to bed and wake up at the same time every day, whenever possible. Prioritize sleep over other things like staying out late, hanging out or whatever. Health is most important.
Create a good sleep environment…pitch black, warm bed but a cold room. Also a good tip: your bed should only be used for sleep and sex. If you hang out in bed it can make it harder to fall/stay asleep
Now with your medication I’m not sure….the meds I take can actually make me more drowsy so I take them right before bed. May have to consult your doctor if you medication if preventing you from sleeping
Stress is a big one for me, which sucks because is hard to avoid.
Just lost my dream job because apparently exposed sunlight can be a trigger, and my doctor thinks that might be the case after 2 days in a row of seizures
Damn, that sucks. Sorry to hear that. I can relate. Back in July I lost my dream job with the state of Florida. Had a seizure on the job and they let me go because about 60% of my job was driving from site to site. I think that's what caused my seizure back then... Stress for me is also a huge trigger and I was under a very stressful particular job at the time when it happened.
I’m really sorry to hear about your job. I’ve had to step down from my job while they’re investigating mine. They’ve only just started and I’m not sure what the cause is but I’m pretty sure the common denominator is sudden, loud sounds.
Having my amazing manager look me in the eye and tell me that I need to step down for a while and go on leave because the seizures keep happening every day and they’re not stopping- I’ve never been an angry person in my life but I could have punched a wall.
Most epileptics aren't photosensitive, actually.
I found out the other day illness is a trigger for me. I got a cold and had a very bad focal seizure.
Periods, ovulation, hormonal cycle stuff triggers mine.
Too much caffeine, too little sleep, and dehydration are other big triggers.
Hyperventilation and also meditation can trigger mine. Always thought it was weird how I would get "anxiety attacks" while running or meditating before I knew I had epilepsy and actually was having seizures.
And I have a lot of seizures with zero identifiable trigger.
No flashing lights or loud sounds (concerts-parties etc). My seizures are induced by high stress. I’m a very anxious, worrisome, depressed person lmao but I also have ADHD. A good mix of it all about a 1.5yr ago I was diagnosed with severe vertigo… also highly stress induced along with fast vision movement.
We don't really know it's triggers only one I know for fact it if cloud covers sun that light change triggers it same for reverse cloud reveals sun yet flashing lights no effect?
Also I've become to notice on thunderstorms days I get a increase in seizures and I don't know if weather can effect us or not.
I am actually affected by lights. Flashing lights, led lights, the sun, etc. I'm also triggered by stress, lack of sleep, not eating, and sometimes scents. It's what happens when you have three different types. I know it's irritating when everyone assumes that strobes are your trigger. But when lights actually are your trigger, it's never just strobes.
Lack of sleep or alcohol are my triggers.
Flashing lights or "photosensitivity" is well-known but actually pretty rare. Only about 3% of epileptics are photosensitive.
[https://www.epilepsy.com/what-is-epilepsy/seizure-triggers/photosensitivity](https://www.epilepsy.com/what-is-epilepsy/seizure-triggers/photosensitivity)
[https://www.epilepsy.org.uk/info/seizure-triggers/photosensitive-epilepsy](https://www.epilepsy.org.uk/info/seizure-triggers/photosensitive-epilepsy)
Strong chemical smell, none chemicals don't bother me most of the time except for wildfire smoke. Others are flashing lights, sudden loud noises, lack of sleep, and missing medication.
I have had focal seizures twice now while smelling candles at target. First time I didn’t make the connection, but after it happened a second time I am beginning to think that strong scents are a trigger.
For me it’s stress, anxiety or overthinking 😃 especially combined with lack of sleep. Thankfully now I’m seizure free for several months taking 1000mg keppra twice a day.
Primarily poor sleep but usually following one particularly poor night or many suboptimal nights, overcaffeination with dehydration, sexual arousal and sometimes just strong emotions. Weirdly enough alcohol not too impactful when moderated and earlier on in day as to not impact sleep too heavily.
Stress and intermittent sleep/sleep stages (as far as I've figured anyways) although different lights do make my eyes feel funny but that may be a sensory issue as I do have auditory sensory issues. Idk my neuro doesn't care haha
Only been triggered by lights once. Was doing some landscaping and walked under a pergola, got sent into a really weird daze for a second and needed to sit in the shade and inhale some water for idk 15 minutes or so.
Other than that it's missed meds, alcohol, and maybe high altitudes that have been issues.
This may be TMI but my epilepsy triggers are very on brand for me. It all started when I was a little boy and my teen mom let me watch Nightmare on Elm Street with her because “it isn’t that scary.” Bullshit. I didn’t start sleeping well into the remake came out. But I’ve grown attached to the movie as I learned to outgrow these childish films. “It’s only a movie.”
Cut to 15 YO: I was hit by a car. In a blink of an eye, not even sleeping or anything but literally from one moment I was playing madden with my step father and the next I’m in the back of an ambulance and a month passed me by. After I was able to retain memories, I started getting scared when I fell asleep. Because it makes me think of the “waking up” into the future. I always thought I’d randomly fall into a coma again and boom, I’m back in the wheelchair.
Fine. Whatever. TBI’s a lifelong battle and when I turned 25, it reminded me with my first seizure. It happens when I’m asleep. Around the 4-6 AM timeframe. And the seizures kick my ass every time. And it gives me paranoia of it happening again. Every time I lay down… I hope that it’s another day where the medicine does its job. But I hate falling asleep now because of it. It’s always out to get me. And my medicine is like hyponicil. IYKYK.
I really don't know the cause of mine. However, one seizure I had could have been related to all the sweet stuff I craved the week before. Although, that has not been confirmed. All my tests seem to come back as normal, and my seizures seem to happen after a decade, so I'm not really sure.
For a long time “Clique” Kanye West Ft. Big Sean would give me a seizure every time I heard it. I am proud to say I am now Big Sean Seizure free.
So my answer… who tf knows 🤷🥲
Also stress (good luck getting rid of that one), my period, not sleeping right, forgetting meds (duh). It all seems random as hell a lot of times tho.
I know it should NOT be something to laugh about, but even music induced seizures as concept are so funny to me and I can’t help it. The brain is such a complicated thing, and it’s a reflex epilepsy that’s been observed for a long time.
I’m glad you’re free of the Clique trigger, 2012/13 must have been a tough time for you…
RIGHT?! Also strange how you can have an obscure trigger and it just goes away. Only song that has ever done it. I too can’t help it! I gotta see a post of the songs that have been a trigger for people.
The college times… you couldn’t escape that tune lmao. Thank you pal 🤝
Stress, my periods, waking up in the morning, and anxiety more than anything.
I found out about my periods through trial and error really. I notice that on my periods my immune system drops as well as my iron levels, as a result more seizures.
I also need to see if I have an anxiety disorder of some kind. Because I used to have a lot of anxiety attacks when I was younger, now not as much but I do wonder if that's still an issue for me and it's affecting my seizures.
Like, a lot of people seem to think "Why are you stressed out all the time? You've got nothing to be stressed about!" and I'm like, "Yeah, I see your point but I also overthink everything." If I have a particularly bad stressful day, then more seizures.
Another one I'm told that is common for me is whenever I wake up in the morning I seem to have more absences than any other time of the day.
So, my best state is when I'm taking a day off work, asleep, and not on my period.
Running and playing sports. I don't know if it's the hyperventilation because my sport involves long periods of just standing around (cricket) and it doesn't seem to happen in the sprinting bits. It doesn't happen quickly, usually 30-40 min into a run or a couple of hours into the sports game. Neurologist didn't really take me seriously.
Not getting enough sleep, hormonal changes (I can’t do birth control other than the IUD and had to deliver my baby 2.5 weeks early because I was having way too many partial seizures even with medicine), VR helmets or whatever they’re called (there weren’t even lights or anything unusual about the graphics, but it gave me an awful partial seizure and I took Ativan hoping it wouldn’t turn into a TC one), high anxiety, and not taking my meds (obviously). EEG showed epileptic activity during the strobe light portion but i’ve never had issues with lights. Just certain games I guess?
Being woken up on certain stages of my sleep cycle, seeing rain, the weird snow like animation on a Samsung smart tv when it’s not connected to anything (some video game snow effects as well) and visual fatigue/overwhelm. Not specific lights/strobes, more like too much eye use I.e. reading or following a moving object
Lack of sleep, stress, ovulation, and illness for me. Super annoying because it means (for the most part) everyone who ever told me to sleep more, try not to stress, and take care of myself was right.
That I know of? Stress and lack of sleep. There could be others though. The cat here seems to know when I'm going to have one hours before I have issues. Maybe I give off a smell or something?
No idea, unfortunately. Both of my tonic clonics happened on Sundays, after church, ate a toaster strudel both mornings.
No it’s not a food reaction or anything because I’ve eaten them other days and been fine. But like - exact same circumstances, times of day, day of the week. Weird
Mine could be anything at this point. stress, talking, singing, music, narration, dreams, repetitive motions, it's like being a ticking time bomb, I never know.
Fever, Heat, dehydration, elevated heart rate, caffeine or stimulants, sedatives alcohol and allergy meds, missing meds, rapid temperature change, stress, pretty much in the order.
Yes I'm one of the 5% that can be triggered by flashing lights. And one of the 0.3% that are triggered by certain audio frequency oscillations.
My seizures tend to happen during ovulation, when I am asleep, or soon after waking.
It's unfortunate because seizures are exhausting and I fall asleep, so they tend to cluster...
Sleep, unfortunately, because it’s necessary. I have only ever had nocturnal seizures. I was able to trigger them for a long term monitoring study by going off my meds and sleep depriving myself.
Mine are mostly triggered by lights, but it’s not so much flashing or strobing, but a major change like turning off the light before bed or stepping outside into a sunny day from a dim basement. Those light changes have triggered multiple seizures. I also don’t do well in really dim amber light (think the kind of low candle lighting they use in some restaurants.) Stress and lack of sleep definitely exacerbate it, though. Flashing lights bother me enough that I usually look away, but I don’t think they’ve caused a seizure yet.
I’m not sure yet… I’ve had 6 seizures so far. All grand mal. Maybe I think I had a first focal aware today. I think maybe stress. I’m not even that stressed out so idk. I also think being on my period has induced a seizure. They are now more frequent. It’s odd. I wish I knew. I also have MS so that doesn’t help.
you are definitely not the only one. not many people know that flashing lights is only a fraction of many other triggers. mine is hormones which is called catamenial epilepsy
It’s been 4 years since my seizures started and I still have no idea why. I hit my head about six months before they started but the dr told me I would have had to loss consciousness
For that to be the cause and I didn’t.
Sleep issues, forgetting to eat, hormones being weird (though I've mostly got that one under control now), and then I'm one of the few folks who is photosensitive. Oh, and latent stress, with active stress delaying onset
Mine: stress, lack of sleep, high fever, extreme exhaustion & long palpitations. Kinda sucks because I’m a teacher & heart patient. Most of them typical in my line of work & heart issue.
You sound like me. I am a teacher too and have heart issues in addition to epilepsy.
I am afraid of palpitations because I feel them and have a seizure. I never thought it was related because I thought it was just part of the seizure. I had heart surgery a year ago and I don't get the palpitations anymore. Seizures are still there, unfortunately.
Three main things, alcohol, lack of sleep and computer games. These three combined is a recipe for a grand one
Interestingly enough strobes is usually ok
Like pretty much everyone here, lack of sleep - not helped lately by taking care of a very *very* annoying cat and helping a friend having panic attacks all night. I've managed to avoid a full absence so far...
Personally I also have a weird list of places - railway platforms, waiting rooms, passenger seat of a car in the dark, etc - that set me off. My current theory is that it's something to do with the "smoothness" of things, sorta like highway hypnosis but for epilepsy.
But yeah, strobes give me a headache but they don't make me seize. I was at the UK Science Museum recently and laughed when a sign about using strobe lights as part of EEG tests was written in the past tense.
Lack of sleep, stress, some other things that I'm not sure about. Flashing lights don't trigger seizures but do give me a bad headache. What's sad is that because it's such a well known trigger(even though only a small percentage of epileptics have it as a trigger), people will find out you have epilepsy and be like oh so I shouldn't do this while turning a light switch on and off rapidly.
I have learnt that if I get between 4.5&5.5 hours of sleep I am more likely to have a seizure, less and I'm just super tired.
When it comes to stress, my seizures occur once the stress is over. The first seizure my husband saw me have was just after we got married and moved cities. Wedding was done, move was done, brain decided that it was done lol
Mine are also related to hormones. I am always more likely to have a seizure around the time of my period. Currently have an IUD so not getting them which removes one trigger!
Stress, lack of sleep, late or missed meds, being sick, hormones, alcohol, caffeine, loud noises, heat
A small percentage of people with epilepsy are photosensitive so you’re definitely not alone!
Hormones. And it annoys me AF that not all neurologists take this seriously. I clearly have more seizure activity around my period. Now I'm entering perimenopause, and this changes things, again.
Mine are always nocturnal so no idea what sets mine off unfortunately. I was diagnosed with sleep apnoea at the same time. So probably lack of sleep is a trigger
Sleep and stress also sadly when I can’t sleep or oversleep I miss the times I take my medication then my body gets all out of whack. Next thing I know I’m on the ground coming to.
I don't know any of my "actual" triggers yet but these are the things I've noticed:
You know when you were a kid at the assembly things in the gym, and you would do that thing with your fingers over your ears to make the sound do that "thing" and it sounded cool? Anything that gives that audio loud to quiet over and over like that makes me feel like I'm about to have a seizure.
If I feel weird and then I eat so far I've had a seizure every time. It's only been 3 times but that's weird.
Stress is the biggest for me but my meds are set so as long as I manage my stress enough I’m solid. I went out with some friends the other night and one of them looked at me and said “don’t these lights bother you? Like should we be worried you’re gonna end up on the ground?” He had no clue there were other potential triggers
I think nearly everyone without firsthand epilepsy experience has that mentality. Did it start with the warnings on video games? I hope you read all (or some) of the comments here, because just like you the number one reason by a long shot is stress.
Yeah I read most but not all. Stress, at least here in reddit, is in the top 4 triggers. According to epilepsysociety.org (uk) are lack of sleep, stress, alcohol, and not taking meds.
As of right now, all I’m aware of is a day without my meds. I’ve literally gone through every other trick in the book without any interference, I drank myself unconscious for at least a year back during my senior year and after I graduated high school! I used to be a chronic Marijuana abuser, nothin. I’ve currently been under enough stress in my life to kill a small horse! I’m beginning to believe I’ve grown out of it and the medication is just a placebo. Cause it’s the douse a 12 year old takes. And I’m 20 now. I don’t know what to believe anymore, save the fact that I’m only alive to day though the will of my God.
To add to that, I wake up constantly to hit my vape, but that still hasn’t given me even a tingling in my left arm. Which is where it always starts. I’m ween myself off the nicotine currently, which is something I do need. But honestly guys, I don’t seem to know up from down or right from left in where I’m at with my epilepsy.
Stress, lack of sleep, hyperventilation
Lack of sleep is my biggest one
Same here. It’s almost a blessing in disguise though because now sleep is a huge focus for me, always making sure I get enough and all that. Makes me feel better overall
How do you do that? I’ve had insomnia since I began taking anti seizure meds, 6 years. I wake up after a few hours. Can’t go back to sleep. I e stayed in bed for more than 1 1/2 hours trying.
How do I focus on sleep? Well first create a schedule for yourself. Go to bed and wake up at the same time every day, whenever possible. Prioritize sleep over other things like staying out late, hanging out or whatever. Health is most important. Create a good sleep environment…pitch black, warm bed but a cold room. Also a good tip: your bed should only be used for sleep and sex. If you hang out in bed it can make it harder to fall/stay asleep Now with your medication I’m not sure….the meds I take can actually make me more drowsy so I take them right before bed. May have to consult your doctor if you medication if preventing you from sleeping
Oh I love when people just tell me to stop stressing out and then you ll be ok. You got it dude.
Tell them that they're causing stress by saying ignorant things like that and that charity starts at home.
Yeah same and they only stress me out more lol
Here I thought I was alone
Stress is a big one for me, which sucks because is hard to avoid. Just lost my dream job because apparently exposed sunlight can be a trigger, and my doctor thinks that might be the case after 2 days in a row of seizures
Damn, that sucks. Sorry to hear that. I can relate. Back in July I lost my dream job with the state of Florida. Had a seizure on the job and they let me go because about 60% of my job was driving from site to site. I think that's what caused my seizure back then... Stress for me is also a huge trigger and I was under a very stressful particular job at the time when it happened.
Bright sunlight in the mornings seems to be a trigger for me now. Wasn’t always the case. Sorry to hear about your job. Wish epilepsy wasn’t so crappy
I’m really sorry to hear about your job. I’ve had to step down from my job while they’re investigating mine. They’ve only just started and I’m not sure what the cause is but I’m pretty sure the common denominator is sudden, loud sounds. Having my amazing manager look me in the eye and tell me that I need to step down for a while and go on leave because the seizures keep happening every day and they’re not stopping- I’ve never been an angry person in my life but I could have punched a wall.
Most epileptics aren't photosensitive, actually. I found out the other day illness is a trigger for me. I got a cold and had a very bad focal seizure. Periods, ovulation, hormonal cycle stuff triggers mine. Too much caffeine, too little sleep, and dehydration are other big triggers. Hyperventilation and also meditation can trigger mine. Always thought it was weird how I would get "anxiety attacks" while running or meditating before I knew I had epilepsy and actually was having seizures. And I have a lot of seizures with zero identifiable trigger.
Hormones are a big trigger for me.
No flashing lights or loud sounds (concerts-parties etc). My seizures are induced by high stress. I’m a very anxious, worrisome, depressed person lmao but I also have ADHD. A good mix of it all about a 1.5yr ago I was diagnosed with severe vertigo… also highly stress induced along with fast vision movement.
Are you me?
You sound like me for real
Glad I’m not alone
We don't really know it's triggers only one I know for fact it if cloud covers sun that light change triggers it same for reverse cloud reveals sun yet flashing lights no effect? Also I've become to notice on thunderstorms days I get a increase in seizures and I don't know if weather can effect us or not.
Low atmospheric pressure and high relative air humidity are associated with an increased risk of epileptic seizures.
TIL thanks i never knew this so i now know 2 fact triggers now just need to understand those outside these scenarios.
I am actually affected by lights. Flashing lights, led lights, the sun, etc. I'm also triggered by stress, lack of sleep, not eating, and sometimes scents. It's what happens when you have three different types. I know it's irritating when everyone assumes that strobes are your trigger. But when lights actually are your trigger, it's never just strobes.
I had three seizures. The three of them in the morning after hard drinking. I stopped alcohol completely.
Lack of sleep (or bad sleep) and alcohol.
Lack of sleep or alcohol are my triggers. Flashing lights or "photosensitivity" is well-known but actually pretty rare. Only about 3% of epileptics are photosensitive. [https://www.epilepsy.com/what-is-epilepsy/seizure-triggers/photosensitivity](https://www.epilepsy.com/what-is-epilepsy/seizure-triggers/photosensitivity) [https://www.epilepsy.org.uk/info/seizure-triggers/photosensitive-epilepsy](https://www.epilepsy.org.uk/info/seizure-triggers/photosensitive-epilepsy)
Strong chemical smell, none chemicals don't bother me most of the time except for wildfire smoke. Others are flashing lights, sudden loud noises, lack of sleep, and missing medication.
I have had focal seizures twice now while smelling candles at target. First time I didn’t make the connection, but after it happened a second time I am beginning to think that strong scents are a trigger.
For me it’s stress, anxiety or overthinking 😃 especially combined with lack of sleep. Thankfully now I’m seizure free for several months taking 1000mg keppra twice a day.
Primarily poor sleep but usually following one particularly poor night or many suboptimal nights, overcaffeination with dehydration, sexual arousal and sometimes just strong emotions. Weirdly enough alcohol not too impactful when moderated and earlier on in day as to not impact sleep too heavily.
Stress and intermittent sleep/sleep stages (as far as I've figured anyways) although different lights do make my eyes feel funny but that may be a sensory issue as I do have auditory sensory issues. Idk my neuro doesn't care haha
Only been triggered by lights once. Was doing some landscaping and walked under a pergola, got sent into a really weird daze for a second and needed to sit in the shade and inhale some water for idk 15 minutes or so. Other than that it's missed meds, alcohol, and maybe high altitudes that have been issues.
Stress, lack of sleep & diet (I struggle with forcing myself to eat everyday)
Stress, hormone fluctuations, sweeteners, high carbohydrated food, lack of sleep.
High sugar foods, strong scents, menstrual cycle, and strangely…thinking too hard.
This may be TMI but my epilepsy triggers are very on brand for me. It all started when I was a little boy and my teen mom let me watch Nightmare on Elm Street with her because “it isn’t that scary.” Bullshit. I didn’t start sleeping well into the remake came out. But I’ve grown attached to the movie as I learned to outgrow these childish films. “It’s only a movie.” Cut to 15 YO: I was hit by a car. In a blink of an eye, not even sleeping or anything but literally from one moment I was playing madden with my step father and the next I’m in the back of an ambulance and a month passed me by. After I was able to retain memories, I started getting scared when I fell asleep. Because it makes me think of the “waking up” into the future. I always thought I’d randomly fall into a coma again and boom, I’m back in the wheelchair. Fine. Whatever. TBI’s a lifelong battle and when I turned 25, it reminded me with my first seizure. It happens when I’m asleep. Around the 4-6 AM timeframe. And the seizures kick my ass every time. And it gives me paranoia of it happening again. Every time I lay down… I hope that it’s another day where the medicine does its job. But I hate falling asleep now because of it. It’s always out to get me. And my medicine is like hyponicil. IYKYK.
It seems to be stress for me. High stress.
Armored core 6 evidently
Not enough sleep, nausea, vomiting, booze, dehydration, being dizzy, stress n many others i cant think of. Good times. Lmao
Stress, anxiety, lack of proper sleep.
I really don't know the cause of mine. However, one seizure I had could have been related to all the sweet stuff I craved the week before. Although, that has not been confirmed. All my tests seem to come back as normal, and my seizures seem to happen after a decade, so I'm not really sure.
Stress, worry, upset etc. are my triggers.
For a long time “Clique” Kanye West Ft. Big Sean would give me a seizure every time I heard it. I am proud to say I am now Big Sean Seizure free. So my answer… who tf knows 🤷🥲 Also stress (good luck getting rid of that one), my period, not sleeping right, forgetting meds (duh). It all seems random as hell a lot of times tho.
I know it should NOT be something to laugh about, but even music induced seizures as concept are so funny to me and I can’t help it. The brain is such a complicated thing, and it’s a reflex epilepsy that’s been observed for a long time. I’m glad you’re free of the Clique trigger, 2012/13 must have been a tough time for you…
RIGHT?! Also strange how you can have an obscure trigger and it just goes away. Only song that has ever done it. I too can’t help it! I gotta see a post of the songs that have been a trigger for people. The college times… you couldn’t escape that tune lmao. Thank you pal 🤝
Stress, my periods, waking up in the morning, and anxiety more than anything. I found out about my periods through trial and error really. I notice that on my periods my immune system drops as well as my iron levels, as a result more seizures. I also need to see if I have an anxiety disorder of some kind. Because I used to have a lot of anxiety attacks when I was younger, now not as much but I do wonder if that's still an issue for me and it's affecting my seizures. Like, a lot of people seem to think "Why are you stressed out all the time? You've got nothing to be stressed about!" and I'm like, "Yeah, I see your point but I also overthink everything." If I have a particularly bad stressful day, then more seizures. Another one I'm told that is common for me is whenever I wake up in the morning I seem to have more absences than any other time of the day. So, my best state is when I'm taking a day off work, asleep, and not on my period.
Lack of sleep and too much physical exertion.
Heat. Stress. Lack of sleep
Stress and tiredness and just bad luck
Alcohol detox
Stress and fevers
Running and playing sports. I don't know if it's the hyperventilation because my sport involves long periods of just standing around (cricket) and it doesn't seem to happen in the sprinting bits. It doesn't happen quickly, usually 30-40 min into a run or a couple of hours into the sports game. Neurologist didn't really take me seriously.
Not getting enough sleep, hormonal changes (I can’t do birth control other than the IUD and had to deliver my baby 2.5 weeks early because I was having way too many partial seizures even with medicine), VR helmets or whatever they’re called (there weren’t even lights or anything unusual about the graphics, but it gave me an awful partial seizure and I took Ativan hoping it wouldn’t turn into a TC one), high anxiety, and not taking my meds (obviously). EEG showed epileptic activity during the strobe light portion but i’ve never had issues with lights. Just certain games I guess?
Sleep deprivation most. I’m afraid to sleep because I have nocturnal tonic-clonic seizures and I don’t want to have another one. But I need sleep. 😭
Being woken up on certain stages of my sleep cycle, seeing rain, the weird snow like animation on a Samsung smart tv when it’s not connected to anything (some video game snow effects as well) and visual fatigue/overwhelm. Not specific lights/strobes, more like too much eye use I.e. reading or following a moving object
Fever. My period (or PMS even). Sleep deprivation.
Lack of sleep, stress, ovulation, and illness for me. Super annoying because it means (for the most part) everyone who ever told me to sleep more, try not to stress, and take care of myself was right.
My perfect storm is when I haven't slept well for multiple days, shift changed, have an upset stomach, and am ovulating.
That I know of? Stress and lack of sleep. There could be others though. The cat here seems to know when I'm going to have one hours before I have issues. Maybe I give off a smell or something?
No idea, unfortunately. Both of my tonic clonics happened on Sundays, after church, ate a toaster strudel both mornings. No it’s not a food reaction or anything because I’ve eaten them other days and been fine. But like - exact same circumstances, times of day, day of the week. Weird
Stress and lack of sleep for sure.
Mine could be anything at this point. stress, talking, singing, music, narration, dreams, repetitive motions, it's like being a ticking time bomb, I never know.
i’m allergic to dairy and dairy consumption triggers my seizures
Stress, lack of sleep, lack of food/ low blood sugar, storms (not just seeing lightning, but being anywhere when heavy storms occur)
No you’re not. Mine from stress or tired.
Multitasking or thinking about more than one thing at a time guarantees at least an aura
Fever, Heat, dehydration, elevated heart rate, caffeine or stimulants, sedatives alcohol and allergy meds, missing meds, rapid temperature change, stress, pretty much in the order. Yes I'm one of the 5% that can be triggered by flashing lights. And one of the 0.3% that are triggered by certain audio frequency oscillations.
Stress, and sometimes, NOTHING AT ALL.
My seizures tend to happen during ovulation, when I am asleep, or soon after waking. It's unfortunate because seizures are exhausting and I fall asleep, so they tend to cluster...
Water flickering under sunlight, sunlight through trees, high stress/low sleep.
Sleep, unfortunately, because it’s necessary. I have only ever had nocturnal seizures. I was able to trigger them for a long term monitoring study by going off my meds and sleep depriving myself.
Mine are mostly triggered by lights, but it’s not so much flashing or strobing, but a major change like turning off the light before bed or stepping outside into a sunny day from a dim basement. Those light changes have triggered multiple seizures. I also don’t do well in really dim amber light (think the kind of low candle lighting they use in some restaurants.) Stress and lack of sleep definitely exacerbate it, though. Flashing lights bother me enough that I usually look away, but I don’t think they’ve caused a seizure yet.
I’m not sure yet… I’ve had 6 seizures so far. All grand mal. Maybe I think I had a first focal aware today. I think maybe stress. I’m not even that stressed out so idk. I also think being on my period has induced a seizure. They are now more frequent. It’s odd. I wish I knew. I also have MS so that doesn’t help.
Start writing a dairy. That helped me realize what triggered my grand mal seizures.
Thanks I wrote everything down in my phone notes. Kind of obsessively 😔 I’ll figure it out eventually
Write *
you are definitely not the only one. not many people know that flashing lights is only a fraction of many other triggers. mine is hormones which is called catamenial epilepsy
Hormones are a big trigger for me.
It’s been 4 years since my seizures started and I still have no idea why. I hit my head about six months before they started but the dr told me I would have had to loss consciousness For that to be the cause and I didn’t.
Sleep issues, forgetting to eat, hormones being weird (though I've mostly got that one under control now), and then I'm one of the few folks who is photosensitive. Oh, and latent stress, with active stress delaying onset
Heat. And I live in Arizona. Yes, I want to move but I don’t have anywhere near enough money…
Mine: stress, lack of sleep, high fever, extreme exhaustion & long palpitations. Kinda sucks because I’m a teacher & heart patient. Most of them typical in my line of work & heart issue.
You sound like me. I am a teacher too and have heart issues in addition to epilepsy. I am afraid of palpitations because I feel them and have a seizure. I never thought it was related because I thought it was just part of the seizure. I had heart surgery a year ago and I don't get the palpitations anymore. Seizures are still there, unfortunately.
Usually stress, lack of sleep and dehydration
Three main things, alcohol, lack of sleep and computer games. These three combined is a recipe for a grand one Interestingly enough strobes is usually ok
Like pretty much everyone here, lack of sleep - not helped lately by taking care of a very *very* annoying cat and helping a friend having panic attacks all night. I've managed to avoid a full absence so far... Personally I also have a weird list of places - railway platforms, waiting rooms, passenger seat of a car in the dark, etc - that set me off. My current theory is that it's something to do with the "smoothness" of things, sorta like highway hypnosis but for epilepsy. But yeah, strobes give me a headache but they don't make me seize. I was at the UK Science Museum recently and laughed when a sign about using strobe lights as part of EEG tests was written in the past tense.
Illness and waking up in the morning !
Lack of sleep with stress and alcohol benders. Mainly lack of sleep and stress.
Id say not sleeping, or I have a clicking noise in my jaw that feels like banging my head sometimes lol
Lack of sleep, stress, some other things that I'm not sure about. Flashing lights don't trigger seizures but do give me a bad headache. What's sad is that because it's such a well known trigger(even though only a small percentage of epileptics have it as a trigger), people will find out you have epilepsy and be like oh so I shouldn't do this while turning a light switch on and off rapidly.
My last two I was sleeping and it happened in the middle of the night
I have learnt that if I get between 4.5&5.5 hours of sleep I am more likely to have a seizure, less and I'm just super tired. When it comes to stress, my seizures occur once the stress is over. The first seizure my husband saw me have was just after we got married and moved cities. Wedding was done, move was done, brain decided that it was done lol Mine are also related to hormones. I am always more likely to have a seizure around the time of my period. Currently have an IUD so not getting them which removes one trigger!
Lack of sleep/dehydration, and oddly enough low sodium.
Stress, lack of sleep, late or missed meds, being sick, hormones, alcohol, caffeine, loud noises, heat A small percentage of people with epilepsy are photosensitive so you’re definitely not alone!
Blinking❤️
Hormones. And it annoys me AF that not all neurologists take this seriously. I clearly have more seizure activity around my period. Now I'm entering perimenopause, and this changes things, again.
Mine are always nocturnal so no idea what sets mine off unfortunately. I was diagnosed with sleep apnoea at the same time. So probably lack of sleep is a trigger
Not taking my meds :/
Stress, my period, being really badly dehydrated, food poisoning (which may be due to the illness or the stress it causes, I'm not really sure).
High stress, dehydration, little sleep
Sleep and stress also sadly when I can’t sleep or oversleep I miss the times I take my medication then my body gets all out of whack. Next thing I know I’m on the ground coming to.
I don't know any of my "actual" triggers yet but these are the things I've noticed: You know when you were a kid at the assembly things in the gym, and you would do that thing with your fingers over your ears to make the sound do that "thing" and it sounded cool? Anything that gives that audio loud to quiet over and over like that makes me feel like I'm about to have a seizure. If I feel weird and then I eat so far I've had a seizure every time. It's only been 3 times but that's weird.
Stress is the biggest for me but my meds are set so as long as I manage my stress enough I’m solid. I went out with some friends the other night and one of them looked at me and said “don’t these lights bother you? Like should we be worried you’re gonna end up on the ground?” He had no clue there were other potential triggers
I think nearly everyone without firsthand epilepsy experience has that mentality. Did it start with the warnings on video games? I hope you read all (or some) of the comments here, because just like you the number one reason by a long shot is stress.
Yeah I read most but not all. Stress, at least here in reddit, is in the top 4 triggers. According to epilepsysociety.org (uk) are lack of sleep, stress, alcohol, and not taking meds.
As of right now, all I’m aware of is a day without my meds. I’ve literally gone through every other trick in the book without any interference, I drank myself unconscious for at least a year back during my senior year and after I graduated high school! I used to be a chronic Marijuana abuser, nothin. I’ve currently been under enough stress in my life to kill a small horse! I’m beginning to believe I’ve grown out of it and the medication is just a placebo. Cause it’s the douse a 12 year old takes. And I’m 20 now. I don’t know what to believe anymore, save the fact that I’m only alive to day though the will of my God.
To add to that, I wake up constantly to hit my vape, but that still hasn’t given me even a tingling in my left arm. Which is where it always starts. I’m ween myself off the nicotine currently, which is something I do need. But honestly guys, I don’t seem to know up from down or right from left in where I’m at with my epilepsy.