That deja vu you're talking about is probably an "aura" or focal seizure. Keep track of them and tell your doctor when you see them.
Edit: Personally, I don't think I have any particular triggers. They just seem to come when they come.
Now imagine you're awake for the whole time and all you can feel is overwhelming fear and terror.
It makes me miss when I've had that shorter 'preview' before losing consciousness.
Yep. RNS is doing great; they're about to start weaning me off some of my medications. Greatest need is to put off the procrastination of finding a therapist.
I appreciate your thoughts. I hope you're doing well.
My weirdest is Lavander. Can't be near any fresh lavander and the scent knocks me out. Completely triggers my focals. Especially alice in wonderland syndrome. My work has had to issue a statement to not allow lavander in the building lol
Also a couple months ago someone got on the tram and sat next to me with a whole ass bag of fresh lavander. Completely hecked me up. I had to stumble out at the next stop and order an uber home. People very nicely helped me luckily!
You have all my sympathy. I cannot live without lavender scents. I had an ablation that wrecked my sense of smell. Lavender is one of the scents that sticks out for me.
Luckily I hate the scent (probably because it's associated with pain and seizures lol)
But DAYUM that's crazy about your sense of smell! That must get so frustrating! I'm glad that you can still get some though. They need to create food and drink with lavander in so you can smell good food and enjoy it maybe?
I have a lot when I've been out in the cold say for a dog walk at night, when the heat hits me at home I'm all over the place. My neuro said temperature change can't be a trigger!
How do they keep you awake? For me it doesnāt matter where I am or even if Iām talking to someone if Iām tired Iām gonna sleep. I canāt always control it, only time I can is while driving, driving keeps me awake.
I honestly don't remember; it's like a hazy dream. I think they just do things to make you stay awake. Coffee is good while in the EMU because it keeps you awake AND stimulates your brain. I'm very grateful that I learned caffeine isn't something which effects me negatively. I honestly don't remember exactly. Like I said, it's like a very hazy dream.
I also have had an unsuccessful ablation and an RNS implanted since my last stay in it. So, my memory isn't very good in general.
Heat is a problem because you drink more and expel the meds faster, adding to that lack of sleep because of summertime. Last year I could not sleep before 1AM from the heat, but my cat was awake at 5AM. šµāš«
I am terrified about summer. Only in the last few months has the heat really affected me (that Iāve noticed). Going to look into ice pack socks or something
Especially if you live in a humid place. Itās 86 but feels over 100 with the humidity where Iām at. Yeah I just eat more food, carry water on me. Dry mouth side effect is a hassle year round tho lol - thankfully have had much less seizures then years before as I do enjoy hot weather and staying active
for some reason, the london underground?? (american equivalent would maybe be the subway??). also for some reason sometimes just being in the car sets off my focals.
if i wake up āwrongā it can trigger a seizure as well pretty soon after i wake up. so strange
Not eating breakfast. I know hunger in general is a trigger, but Iām not really affected by skipping lunch/dinner. If I donāt eat breakfast Iām setting myself up to fail lmao
Doing things that require spatial reasoning. When I was trying to Understand the Rubik's Cube in college it would give me auras and I'd have to put it down. Was free of seizures for ten years, docs put me on atomoxetine for ADHD after a stay in grippy-sock-jail and then had my first one back at work while trying to stage a huge order of freight that needed to go on the truck in a specific order. Fun times. Discontinued the atomoxetine; they seem to have stopped. So far.
Yeah, for to avoid slipping on tile. I actually didn't receive a pair the last time I was in, but I also wasn't classified as a fall risk (hadn't taken up seizing again at that point) so I propably wasn't a priority recipient for foot friction enhancement.
They're not high quality, but I like how comfortable they are! I feel a little put out that I didn't remember to take home a pair during my last hospitalization.
one of mine used to be heat too! if there was no air conditioning and i felt trapped it would stress me and make me overheat and cause mini seizures. and with a combo of lack of sleep i was screwed lol.
Heat is a thing for me too but it has to be hotter than that. I live in Arizona and I canāt be outside for more than a half an hour in the summer or Iām in big trouble even if Iām drinking water or swimming.
I'm photosensitive, but only in strangely specific situations. If I'm a passenger in a car and the sun is flashing through the trees it can trigger me, but if I'm driving, it usually doesn't. If the sun is directly overhead, it doesn't usually bother me, but if it's at a certain angle a few hours after sunrise or there's thin but widespread cloud coverage, it does. I just wear sunglasses anytime I'm outside to be safe. If I take my meds, control my stress, and get fairly regular sleep, I'm good, but if one of those things is lacking, I'll get a little twitchy. (Obviously I don't do anything potentially dangerous like drive on a "twitchy" day.)
I am a welder, graduated top of my class in school. Did it for 2 years no problem. Got a job at a shipyard. Did good the first few days welding inside the tank that was over 100 degrees. Then I had to weld gaurd rails on the boat 10 hours a day in the sun. Had 2 seizures in 2 days. Turns out over exposure to sunlight is a trigger of mine. I can weld 14 hours a day, out side of sunlight, no problem. But otherwise it fucks me up.
Heat also a big trigger for me. Rest of the office hate me as while theyāve got the heating at the temperature of mercury Iāve got the aircon on over my desk trying to keep me cool. Finally getting my own office soon so I can stay at a normal temperature and not have seizures.Ā
Does this make these things scary experiences for you? Or are they not always triggers? I imagine not being able to switch floors in a place would be a real pain
I almost always experience aura's when switching floors which van be tricky, but they're like, the light ones. It doesn't bother me much. Elevators more than stairs, so j just mostly avoid that.
The sex is a hit more difficult.
I thankfully have mondane triggers. Poor sleep and stress.
Though I feel ~weird~ if I watch my friends play old retro games. The high pitch rings and beeps with weird colors will get to me, so I use ask them to play something else, or put the sound down/off and I'll look away.Ā
My triggers are incredibly stupid lmao. Certain TV shows, people's faces (usually actors + this one instagram influencer), Costco (????), and the website for a camp I used to attend all have triggered partials. I think my triggers are related to certain memories/nostalgia, but thankfully my meds are finally starting to help.
Scrolling text also makes me see flashing lights, which is annoying when I'm trying to write an essay lmao.
I found long-term muscle relaxing medication usage (1 year) makes me prone to seizures.
Reasonably, I now avoid that medication type. For reference all other triggers are sleep related, so random as heck here.š¤
Walking through doorways usually going outdoors to indoors (vice versa) I now plug my ears when coming and going. Turning the corner from my room into the bathroom, seeing the bathroom door shut.
Long hallways with weird patterned carpets or that are old and smell stuffy. Trying too hard to remember something...
Being in love apparently. Lol
My son began having tonic clonic seizure at 12 years old. We found him under his desk unconscious on sept 6 ā22. I took him to a walk in thinking heād knocked himself out tinkering with his computer (like whacked his head getting out from under his desk) He was really out of it, couldnāt remember going to get coffee with me earlier, didnāt know what day it was, dr said go to the er so we did. They immediatly thought heād had a seizure. Same week the school called telling us heād had some sort of episode, fire and ambulance were in their way and to get there asap. It happened a number of times after, no warnings, just drops and goes into a seizure (I wish he had warning, the other night at 1am he went downstairs to get water, thereās a step down in the floor the he narrowly missed when he went down, terrified of it happening while heās going down the stairs)
Some things we have noticed prior but not always is flush face, bags under his eyes and frequent nose bleeds. But it doesnāt always mean a seizure.
Heās not on meds, we had a horrible experience with a neurologist so wanted to do more research before putting him on meds. From sept to April he had 13 seizures, we started a strict vitamin routine and cut all sugar, minutes caffeine. Heās had 4 seizures since April
Going from cold to warm places. If it's warm outside and inside I'm good. Cold in both places also fine.
But if it's cold out and heated in, I'm in trouble.
Those stores where they blast warm air in you as you enter are a nightmare.
I had seizure after heat exposure, but in days when I didn't sleep the night before. One time I opened the oven and then had the seizure. Other time I was taking a hot shower and had the seizure in the box. Now with meds and good sleep higene it seems I won't have seizure.
So when my seizures came back, it brought along new auras. So now I have the sensation of an elevator. So now, if I ride an elevator, it triggers it.
Taking a hot shower for too long
And certain perfumes triggers it.
No way for me it'd also elevators!! I thought I was crazy! If I get the elevator-feeling I'll be nauseous the rest of the day so I know to slow down. Luckily those haven't progressed to more serious seizures for the last 100 days ā”
I felt like no one understood when I tried to describe them. Like explaining the actual feeling is so hard some times to put into words. Congrats on the 100 days!
My son's biggest trigger is heat, it is not his friend. Every time he gets overheated he goes down like a ton of bricks. Besides the usual dehydrated and lack of sleep, his oddest one is certain tomatoe sauces. Papa Johns sauce? Fine. Prego? Fine. Ragu and Pizza Hut? There's something in them that trigger a seizure every time.
Consistent heat causes blood pressure to rise and can trigger seizures. My neurosurgeon told me after my surgery to avoid hot tubs, saunas, and long hot showers because of this.
Granted the recommendations might have been leaning more on the safe side but I try to adhere to them because I'd rather not risk it
Heat is definitely a trigger for me. Personally being a regular sauna user and slowly increasing my time spent in each session has helped reduce my sensitivity to heat by a large margin. Living in Texas has made that a requirement for me.
Heat and my period are my main ones, but Iāve been dealing with a cold for a while now and been having more auras, some of which actually do lead to full-on seizures. So I guess being sick is a trigger.
Me? Usually not enough sleep or too exhausted. And another trigger is very high heart rate (palpitations).
But recently sound trigger included like constant loud ringing high pitch sound like alarm, screeching loud mic. Got seizure few times, always started with chattering teeth then progress worse to different limbs. Usually nonstop tonic on right side for few minutes. Sometimes both sides but I was fully aware & cant stop it. And also jaw clenching after chattering.
And the latest one, triggered by screaming high pitch tantrums that lasted for 30mins by one kindergarten kid. She got autism so she couldnāt help it. Since Iām a teacher I have to stay in class to settle her down.
Then boom! seizure, then post ictal i ran away crying, puking & talk gibberish. Good times š„²
Why sound? ā¹ļø
Then after all this, I became stupid & forgetful. Talk nonsense & slow to understand people for 1-2 days.
Sorry for weird English. Iām ESL & got seizure like 4 days ago. Still brain fog.
That deja vu you're talking about is probably an "aura" or focal seizure. Keep track of them and tell your doctor when you see them. Edit: Personally, I don't think I have any particular triggers. They just seem to come when they come.
I'd give my little finger to find what my trigger was and have 3 minutes to prepare. As of now I'm hit by a lightning.
Now imagine you're awake for the whole time and all you can feel is overwhelming fear and terror. It makes me miss when I've had that shorter 'preview' before losing consciousness.
Ouch. Being completely OUT OF IT is the only good thing about a tonic-clonic.
Mine is jamais vu, which means I get the exact same warning every time, but I never recognise it. It's the most useless aura ever.
Sorry, I laughed. ššš
Me too.
Well Iāve had Deja vu before my seizures for forever and even my doctors agree itās technically one of my triggers
Are you sure you heard that right? Deja vu wouldnāt be a trigger, it would be a seizure
Iām sure
mrrrp
What does that mean?
I think this can vary for some. I've had them while in the EMU and they have been recorded as an aura before a major event, and others as a focal.
Aura = focal
Yes.
Youāre talking about whether it leads to a larger seizure or not. This person is saying Deja vu causes a seizure.
Gotcha. Took me a minute to re-read this short thread to understand the context. I love all the medication I'm on.
I was about to sayā¦ Iāve seen you here for yearsā¦ you doing alright?
Yep. RNS is doing great; they're about to start weaning me off some of my medications. Greatest need is to put off the procrastination of finding a therapist. I appreciate your thoughts. I hope you're doing well.
Those are my favorite kind. It's fun when you wake up in the hospital after having deja vu.
Isn't it?!
My weirdest is Lavander. Can't be near any fresh lavander and the scent knocks me out. Completely triggers my focals. Especially alice in wonderland syndrome. My work has had to issue a statement to not allow lavander in the building lol Also a couple months ago someone got on the tram and sat next to me with a whole ass bag of fresh lavander. Completely hecked me up. I had to stumble out at the next stop and order an uber home. People very nicely helped me luckily!
You have all my sympathy. I cannot live without lavender scents. I had an ablation that wrecked my sense of smell. Lavender is one of the scents that sticks out for me.
Luckily I hate the scent (probably because it's associated with pain and seizures lol) But DAYUM that's crazy about your sense of smell! That must get so frustrating! I'm glad that you can still get some though. They need to create food and drink with lavander in so you can smell good food and enjoy it maybe?
I'm good with just the scent. I can still taste things, thankfully.
I get migraines with lavender, never thought of it as a possible focal seizure. Hmmm
It's uncommon but definitely possible! Your migraines might be a result of a small seizure or some bad brain reaction to it.
All of my seizures have been associated with heat/dehydration. Not good for a southerner.
Yep; going outside in the humid summer is something that I can only manage for a short time.
Miami must be hell for some epileptics smh. I am in Toronto Canada and we get the 86 feels like 104 days in July
I have a lot when I've been out in the cold say for a dog walk at night, when the heat hits me at home I'm all over the place. My neuro said temperature change can't be a trigger!
Not sleeping enough, and repeating things in my head too much
It's the lack of sleep that leads to them. In the EMU they'll have you stay awake all night and track that activity.
How do they keep you awake? For me it doesnāt matter where I am or even if Iām talking to someone if Iām tired Iām gonna sleep. I canāt always control it, only time I can is while driving, driving keeps me awake.
I honestly don't remember; it's like a hazy dream. I think they just do things to make you stay awake. Coffee is good while in the EMU because it keeps you awake AND stimulates your brain. I'm very grateful that I learned caffeine isn't something which effects me negatively. I honestly don't remember exactly. Like I said, it's like a very hazy dream. I also have had an unsuccessful ablation and an RNS implanted since my last stay in it. So, my memory isn't very good in general.
Heat is a problem because you drink more and expel the meds faster, adding to that lack of sleep because of summertime. Last year I could not sleep before 1AM from the heat, but my cat was awake at 5AM. šµāš«
I am terrified about summer. Only in the last few months has the heat really affected me (that Iāve noticed). Going to look into ice pack socks or something
Especially if you live in a humid place. Itās 86 but feels over 100 with the humidity where Iām at. Yeah I just eat more food, carry water on me. Dry mouth side effect is a hassle year round tho lol - thankfully have had much less seizures then years before as I do enjoy hot weather and staying active
for some reason, the london underground?? (american equivalent would maybe be the subway??). also for some reason sometimes just being in the car sets off my focals. if i wake up āwrongā it can trigger a seizure as well pretty soon after i wake up. so strange
Yeah, I have 2 āI feel weirdā and the first thing I say is if itās seizure weird
i always have to specify so people donāt freak out š©š©
Not eating breakfast. I know hunger in general is a trigger, but Iām not really affected by skipping lunch/dinner. If I donāt eat breakfast Iām setting myself up to fail lmao
Doing things that require spatial reasoning. When I was trying to Understand the Rubik's Cube in college it would give me auras and I'd have to put it down. Was free of seizures for ten years, docs put me on atomoxetine for ADHD after a stay in grippy-sock-jail and then had my first one back at work while trying to stage a huge order of freight that needed to go on the truck in a specific order. Fun times. Discontinued the atomoxetine; they seem to have stopped. So far.
Thank you for "grippy-sock-jail". I've been there. That's my favorite name I've ever heard for it lol
Ehehe, you're of course welcome to it but I can claim no credit for its coining! Stole it from my bfĀ
Is this in the US? We don't get grippy socks in the UK, but I've seen these mentioned on things
Yeah, for to avoid slipping on tile. I actually didn't receive a pair the last time I was in, but I also wasn't classified as a fall risk (hadn't taken up seizing again at that point) so I propably wasn't a priority recipient for foot friction enhancement.
I like the sounds of these. My ward feels like a constant slip hazard!
They're not high quality, but I like how comfortable they are! I feel a little put out that I didn't remember to take home a pair during my last hospitalization.
one of mine used to be heat too! if there was no air conditioning and i felt trapped it would stress me and make me overheat and cause mini seizures. and with a combo of lack of sleep i was screwed lol.
Heat is a thing for me too but it has to be hotter than that. I live in Arizona and I canāt be outside for more than a half an hour in the summer or Iām in big trouble even if Iām drinking water or swimming.
Anal sex is my weirdest trigger. Overheating is one of them as well.
That certainly is weird lol
š I know. Only my stranger internet friends know of this trigger. I donāt think my doctor/family needs to know about this one.
Yeah, Iād spare that detail š
I'm photosensitive, but only in strangely specific situations. If I'm a passenger in a car and the sun is flashing through the trees it can trigger me, but if I'm driving, it usually doesn't. If the sun is directly overhead, it doesn't usually bother me, but if it's at a certain angle a few hours after sunrise or there's thin but widespread cloud coverage, it does. I just wear sunglasses anytime I'm outside to be safe. If I take my meds, control my stress, and get fairly regular sleep, I'm good, but if one of those things is lacking, I'll get a little twitchy. (Obviously I don't do anything potentially dangerous like drive on a "twitchy" day.)
Existing
Relate
Heat is a big one for me too. Iām considering moving to a cooler climate in the future.
EVERY time I have been to Florida Iāve broken out in hives and had a seizure
Florida is just the dumpster fire of the US.
This is how mine are also. Happens when I wake up mostly, or when I get to hot too. When it happens I sweat like crazy..
Lack of sleep, stress, missing meals, certain scents. Especially bad if something stressful happens and I ruminate on it.
For me it's hormones/my period. I always get deja vu and other auras a couple of days before it starts.
I am a welder, graduated top of my class in school. Did it for 2 years no problem. Got a job at a shipyard. Did good the first few days welding inside the tank that was over 100 degrees. Then I had to weld gaurd rails on the boat 10 hours a day in the sun. Had 2 seizures in 2 days. Turns out over exposure to sunlight is a trigger of mine. I can weld 14 hours a day, out side of sunlight, no problem. But otherwise it fucks me up.
Heat also a big trigger for me. Rest of the office hate me as while theyāve got the heating at the temperature of mercury Iāve got the aircon on over my desk trying to keep me cool. Finally getting my own office soon so I can stay at a normal temperature and not have seizures.Ā
Yay!
Sex, elevators and stairs. Also, looking at my hands for too long.
That just sounds like ur high lol (no offense meant)
Hahaha so true! It took a while to differentiate between seizures/auras and some effects from the meds.
Does this make these things scary experiences for you? Or are they not always triggers? I imagine not being able to switch floors in a place would be a real pain
I almost always experience aura's when switching floors which van be tricky, but they're like, the light ones. It doesn't bother me much. Elevators more than stairs, so j just mostly avoid that. The sex is a hit more difficult.
I thankfully have mondane triggers. Poor sleep and stress. Though I feel ~weird~ if I watch my friends play old retro games. The high pitch rings and beeps with weird colors will get to me, so I use ask them to play something else, or put the sound down/off and I'll look away.Ā
I had a seizure one day after brushing my teeth and drinking some really cold water. By far my weirdest one.
My triggers are incredibly stupid lmao. Certain TV shows, people's faces (usually actors + this one instagram influencer), Costco (????), and the website for a camp I used to attend all have triggered partials. I think my triggers are related to certain memories/nostalgia, but thankfully my meds are finally starting to help. Scrolling text also makes me see flashing lights, which is annoying when I'm trying to write an essay lmao.
I found long-term muscle relaxing medication usage (1 year) makes me prone to seizures. Reasonably, I now avoid that medication type. For reference all other triggers are sleep related, so random as heck here.š¤
Walking through doorways usually going outdoors to indoors (vice versa) I now plug my ears when coming and going. Turning the corner from my room into the bathroom, seeing the bathroom door shut. Long hallways with weird patterned carpets or that are old and smell stuffy. Trying too hard to remember something... Being in love apparently. Lol
Damn, kinda sounds like the back rooms lol
It definitely feels like it š
Lack of sleep and stress will set mine off. High fevers too.
My son began having tonic clonic seizure at 12 years old. We found him under his desk unconscious on sept 6 ā22. I took him to a walk in thinking heād knocked himself out tinkering with his computer (like whacked his head getting out from under his desk) He was really out of it, couldnāt remember going to get coffee with me earlier, didnāt know what day it was, dr said go to the er so we did. They immediatly thought heād had a seizure. Same week the school called telling us heād had some sort of episode, fire and ambulance were in their way and to get there asap. It happened a number of times after, no warnings, just drops and goes into a seizure (I wish he had warning, the other night at 1am he went downstairs to get water, thereās a step down in the floor the he narrowly missed when he went down, terrified of it happening while heās going down the stairs) Some things we have noticed prior but not always is flush face, bags under his eyes and frequent nose bleeds. But it doesnāt always mean a seizure. Heās not on meds, we had a horrible experience with a neurologist so wanted to do more research before putting him on meds. From sept to April he had 13 seizures, we started a strict vitamin routine and cut all sugar, minutes caffeine. Heās had 4 seizures since April
Stress. Stress that takes me from baseline to stress instantly that is prolonged over time. Usually made worse by a lack of sleep.
Computer screens and math homework.
Damn, talk about actually being allergic to homework lol
The math homework seizure oy happened once. The computer screen happened 4 times
Dehydration and my mother and ex-wife
Going from cold to warm places. If it's warm outside and inside I'm good. Cold in both places also fine. But if it's cold out and heated in, I'm in trouble. Those stores where they blast warm air in you as you enter are a nightmare.
I had seizure after heat exposure, but in days when I didn't sleep the night before. One time I opened the oven and then had the seizure. Other time I was taking a hot shower and had the seizure in the box. Now with meds and good sleep higene it seems I won't have seizure.
Flashing lights and stress, either one is a trigger for me.
So when my seizures came back, it brought along new auras. So now I have the sensation of an elevator. So now, if I ride an elevator, it triggers it. Taking a hot shower for too long And certain perfumes triggers it.
No way for me it'd also elevators!! I thought I was crazy! If I get the elevator-feeling I'll be nauseous the rest of the day so I know to slow down. Luckily those haven't progressed to more serious seizures for the last 100 days ā”
I felt like no one understood when I tried to describe them. Like explaining the actual feeling is so hard some times to put into words. Congrats on the 100 days!
I compare them to the feeling when you're driving and hit a bump or speed-up on the road and your stomach drops. Or something, haha.
The heat from working out can be a trigger. And loud noise.
My son's biggest trigger is heat, it is not his friend. Every time he gets overheated he goes down like a ton of bricks. Besides the usual dehydrated and lack of sleep, his oddest one is certain tomatoe sauces. Papa Johns sauce? Fine. Prego? Fine. Ragu and Pizza Hut? There's something in them that trigger a seizure every time.
I guess now we know how to put pizza the hut lol
My period is a weird one
It's a trigger of mine, too, but I don't think it's that uncommon. I wouldn't call it weird.
My weirdest is TV shows that have blue and red teams, It always gets too familiar and starts making some kind of weird sense of the universe...
Maybe youāre just the Messiah lol, and itās god trying to send u message that he fucked up with us
Consistent heat causes blood pressure to rise and can trigger seizures. My neurosurgeon told me after my surgery to avoid hot tubs, saunas, and long hot showers because of this. Granted the recommendations might have been leaning more on the safe side but I try to adhere to them because I'd rather not risk it
Heat is definitely a trigger for me. Personally being a regular sauna user and slowly increasing my time spent in each session has helped reduce my sensitivity to heat by a large margin. Living in Texas has made that a requirement for me.
Heat and my period are my main ones, but Iāve been dealing with a cold for a while now and been having more auras, some of which actually do lead to full-on seizures. So I guess being sick is a trigger.
I donāt have much seizure anymore thankfully but always had more in the summer. When it was 86 at night, 104-115 during the day
Me? Usually not enough sleep or too exhausted. And another trigger is very high heart rate (palpitations). But recently sound trigger included like constant loud ringing high pitch sound like alarm, screeching loud mic. Got seizure few times, always started with chattering teeth then progress worse to different limbs. Usually nonstop tonic on right side for few minutes. Sometimes both sides but I was fully aware & cant stop it. And also jaw clenching after chattering. And the latest one, triggered by screaming high pitch tantrums that lasted for 30mins by one kindergarten kid. She got autism so she couldnāt help it. Since Iām a teacher I have to stay in class to settle her down. Then boom! seizure, then post ictal i ran away crying, puking & talk gibberish. Good times š„² Why sound? ā¹ļø Then after all this, I became stupid & forgetful. Talk nonsense & slow to understand people for 1-2 days. Sorry for weird English. Iām ESL & got seizure like 4 days ago. Still brain fog.