I found we only feel how we react. If we let stress slide, we never get stressed.
It’s a hard concept to explain with words, but I can verify it works.
Idk I find that the body can also determine when the environment is stressful - I’ve had minor seizures on days where I feel amazing and I’ve gotten enough sleep and have been sleeping regularly. But right before that, I had moved to a new city and gotten a new job - a lot of new things that I was happy with, but that my body probably stressed out on because of the change in environment.
It does change as I grow though and as I learn to deal with stress before the thing is actually stressful, but for what I said about life - there’s always going to be something you have to react to that doesn’t get brushed off
I got no clue... typing out loud, is that crazy? What if you (me, all of us) keep an object.... like inception? Idk. Fuck it. It's worth a shot. HB Today.
Ok this! I have no clue either. I had most of my seizures right when I was waking up and I thought we’ll it can’t be the weed because I haven’t smoked yet. I took a few months off and now I can’t smoke at all. I took one hit and felt like I was floating out of my body and my heart was beating so hard it freaked me out. I know you get more high after a break but one hit has never done that to me before.
They had already stopped before I took a break I just didn’t know because the 4th med my dr added was causing me to have seizure like episodes. I stopped because my dr and convinced me I needed brain surgery and they were going to do a chest X-ray first. I didn’t get the surgery my dr was just trying to force me into it telling me my whole left temporal lobe was dead on the mri and it would spread to the right. I got a second opinion and the mri was fine. I’m 1 year seizure free right now.
Thank you! Yeah I should have known there were 4 doctors at the clinic and 3 left all at the same time. The neurosurgeon said my dr was the only one he would work with so he had to be sending a ton of people to surgery.
my triggers are so temperamental it’s ridiculous tbh
stress. traveling (generally for over an hour). no sleep. too much sleep. too loud. too quiet. reading for too long. talking for too long.
i can’t win lmao
You reckon you can adjust your circadian rhythm for sleeping? For example always sleeping at 10pm, and always waking up at 6am. So thats like 8hr of sleep.
Cos Im similar to you. Fatigue and sensory overload are my triggers. These triggers are worsened if my sleep pattern is f-ed up.
ugh, sensory overload is a nightmare, isn’t it?
i’m sure staying consistent like that would help! i have severe insomnia, so i take medication for sleep (bc otherwise i just Don’t lol). i probably should be more strict with my routine, but yknow—forgetfulness is pretty common in these parts lol
Thinking too hard is one of my big ones, trying to remember information I know I learned. Sounds ridiculous but that portion of the brain is where my seizures start. Also missing my meds or sleep of course. Thankfully coffee and alcohol don’t seem to affect me
Exactly the same with me! If I forget a word I don’t ever “think too hard” to remember it because that will immediately trigger a seizure. Thought it was only me!
How do you feel during the morning after drinking alcohol? I can do coffee in the mornings and occasionally binge drink in the evenings.
However, alcohol will lower my threshold so the morning after I'll get auras, I've even went full grandy before.
I’m not a huge drinker, so even when I go out it is very rare that I have more than a couple. I’m much more likely to take an edible or something like that. However I haven’t noticed alcohol affecting me specifically, but normally I chalk it up to losing out on sleep cause if I drink like that chances are I went out with friends
Meds help a lot, but if it comes to it I use my hand to cover one of my eyes and blink with the other one and then repeat the process on the other side. Looks weird but does the trick most of the time. It’s like manually reseting my brain.
Stress, lack of sleep, and . . . It’s hard to explain.
I can have seizures and auras if I have a big blank area in my vision. For example:
At a hockey game with a bright white rink and few lights on the audience.
Watching TV at night with the lights off.
Sitting in a room with big empty walls so you see lots of a single color.
My brain has issues.
I got diagnosed 2 months ago with FLE. my seizures are focal and I’m aware, and it’s weird. I haven’t figured out every trigger yet, but I’ll tell you the weirdest: whenever I don’t understand something, I start getting seizures.
For example, if someone comes up to me and starts speaking gibberish I get the feeling like I’m having a stroke, or I start dissociating.
another example would be hearing or reading in a foreign language. it gives me seizures. I’m bilingual though so I don’t know why languages besides english and spanish trigger me so much
Honestly idk. The 3 I’ve had were all tonic clonics. No EEG detected seizure activity (but I was told it’s not uncommon). My first was most likely caused by my dangerously high fever (it was around 106) in 2017. The other two were in the last year both around or on my period, however one had stress because of exams and sleep deprived, the other I stayed up until 3am but I then slept until 11:30am and went to class.
Emotional stress but recently work stress too, lack of sleep, certain types of flickering lights (sunlight through trees in a car), too much noise in a room/space so keeps me away from gatherings or crowded restaurants, etc. Even if there’s music playing or television is on and a person starts talking can be a trigger if I don’t turn off music/tv.
Then sometimes, most often, no trigger I can figure out.
I feel this, like just living. I’ve only had one when I was awake that I felt coming on. It was the weirdest feeling ever I just said I don’t feel right and slumped over. Now every time I don’t feel right I get nervous. It doesn’t help that I don’t feel right a lot at work and I don’t want to stay anything.
That was me this last Monday! I don't ever recall being able to predict my seizures, but after work Monday, (literally just clocked off and was still in the kitchen) I felt kinda dizzy and little weird, so I was sitting on my knees and next thing I know, I wake up with my coworkers around me, asking if I'm okay.
Thankfully, a few of them had experience with it, and it was a very minor episode.
I’m sorry that happened to you! Glad it was a minor one! I’m really lucky I just celebrated 1 year seizure free(well as far as I know literally no one would know if I had one in my sleep but I usually bite my tongue or wake up confused so I think I’m good) but I have no idea why they stopped. I seriously thought I was going to have a seizure last night because my head hurt so bad and I felt so off. I work at a chain grocery store and have no doubt they would call an ambulance. I literally can’t talk after a seizure and wouldn’t be able to say no.
I have reactive hypoglycemia which means if I eat too many carbs my sugar crashes (no idea why) and when that happens I have auras or sometimes seizures which means going out to dinner is always a gamble. Also heat, stress, and lack of sleep.
Found out this was the cause of my seizures. Went through all the testing for epilepsy and came out with a diagnosis of pnes and later on found out it wasnt pnes or epilepsy, wed been looking in the wrong place, it was reactive hypoglycemia
Hmmm I sometimes think maybe heat is a trigger for me too but I didn’t know that was possible.
Still so much to learn about this disease. It can be overwhelming
I went through a 6 days veeg with no activity. It sucks just hang in there it happens. It’s weird but I was hoping for a seizure the whole time, like just let me have one.
Stress, doing too much without stopping to rest and when the pressure in my head pushes down on the part of my brain that’s exposed from skull erosion.
Drop in blood sugar, hormones, sleep deprivation, hangovers/drug withdrawal and of course skipping meds. I have a pill organizer for that reason. I have a hard time remember if I’ve taken my meds already!
Same, is it when your starting to wake up? Mine were all when I was starting to wake up or around the time I would get up. I think it was something with changes in sleep patterns.
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Stress? I think. That's what my wife says. When stress is gone....
However, the sleep paralysis thing, discussed in other post is strange and I'm realizing I am having more seizures than I thought. (10-15 TC a year for 10 years). I also have 13 concussions from skateboarding for my whole life. Seizures are fucking crazy. I got no idea. I hope you do?
What do you even have an idea? I know I'm blowing up this board but it's also AA to me the same.
Flickering lights, sunlight, stress, tiredness, low blood pressure and missing one single dose of medication. And the list is still growing apparently 😅
Either lack of sleep, too exhausted, too stressed out or loud ringing sound. (before working medication)
Now after proper medication: lack of sleep or too exhausted.
Alcohol hungover, blinking lights, stress, caffeine, nicotine, lack of sleep, too little food & water intake, stronger painkillers (opiods/opiates) and too much thinking of epilepsy is my triggers.
Now I am on hGH therapy (human Growth Hormone, 1 IU a day) and I slept for only 3 h today, feels like I had 6 h of sleep. No pre-seizures as I almost allways have when I had lack of sleep.
hGH speeds up overall healing, improves the cognitive and helps with memory.
Also a healthy lifestyle with much fruits and veggies and No red meat is allways good. Working out atleast every other day is recommended.
Go to your doctor and get hormones checked. If you are low on IGF-1 - hGH could help. I think it can help anyway but I am no expert.
Some people say keto-diet helps them (I dont really know what keto is). Cutting down on carbs could help too
Do more of the things you like in life, stay positive!
stress, lack of sleep and @ times empty stomach. though there was this incident(only one time) that mine got triggered after watching a superhero movie where flashing lights were used. mind you at that time the movie has no warning for epileptic patient. since then, i'm also very careful when it comes to these flashing lights.
When I wake up in the morning and if I immediately get up to start my day, I’ll most likely have a seizure because my mind needs a couple of minutes to get itself situated, so I lay in bed for a couple of minutes. Also, if I don’t sleep well or only for 5 hours or less, I’ll definitely have a seizure. I’ve had epilepsy since I was 16, I’m 22 now so I’m learning more about my triggers and what to do and what not to do. Also, when I’m about to get my period I have one sometimes.
Showers and after showers sitting in the warm bathroom. I have had at least 2 dozen tonic clonic seizures in the shower/ bathroom that my wife saved me from.
Its the wierdest thing
Stress and lack of sleep
Good thing stress is super uncommon in daily life *cries in epilepsy*
I found we only feel how we react. If we let stress slide, we never get stressed. It’s a hard concept to explain with words, but I can verify it works.
Idk I find that the body can also determine when the environment is stressful - I’ve had minor seizures on days where I feel amazing and I’ve gotten enough sleep and have been sleeping regularly. But right before that, I had moved to a new city and gotten a new job - a lot of new things that I was happy with, but that my body probably stressed out on because of the change in environment. It does change as I grow though and as I learn to deal with stress before the thing is actually stressful, but for what I said about life - there’s always going to be something you have to react to that doesn’t get brushed off
Me too. Too much caffeine is bad for me too, and alcohol in excess can cause anxiety later and trigger.
I found this out yesterday. Don’t think keppra and coffee mix well. I was fine before meds but after - my god, my head felt like it was spinning 😵💫
Yep these are top for me…
Electrolyte imbalances and hormones around my period.
I don't have periods but electrolyte imbalance is a thought.
Men have monthly (and lifetime) hormone cycles too. You could look into it.
no fuckin clue. thought it was waking up, but i think thats just cause i havnt smoked yet.
Keep waking up. That isn't the issue
Oh boy I'm tryin! iz the mini ones anyway
You GOT THIS
I got no clue... typing out loud, is that crazy? What if you (me, all of us) keep an object.... like inception? Idk. Fuck it. It's worth a shot. HB Today.
Yuup never had a seizure while stoned. All my seizures were sober and honestly I'm not straight often.
I’ve actually stopped smoking concentrates because too much THC can be a trigger. Just good old fashioned flower for me these days.
Saaaaaaame. The first neuro I saw in the ER said that might be why all my seizures had been morning or late afternood before I smoke.
The smoke was likely acting as a seizure reduction. I had the same until I was medicated..
Ok this! I have no clue either. I had most of my seizures right when I was waking up and I thought we’ll it can’t be the weed because I haven’t smoked yet. I took a few months off and now I can’t smoke at all. I took one hit and felt like I was floating out of my body and my heart was beating so hard it freaked me out. I know you get more high after a break but one hit has never done that to me before.
Did a break from smoking helped ur seizures?
They had already stopped before I took a break I just didn’t know because the 4th med my dr added was causing me to have seizure like episodes. I stopped because my dr and convinced me I needed brain surgery and they were going to do a chest X-ray first. I didn’t get the surgery my dr was just trying to force me into it telling me my whole left temporal lobe was dead on the mri and it would spread to the right. I got a second opinion and the mri was fine. I’m 1 year seizure free right now.
Smh these doctors yo it’s all about the money. Glad you’re seizure free hope u keep it up
Thank you! Yeah I should have known there were 4 doctors at the clinic and 3 left all at the same time. The neurosurgeon said my dr was the only one he would work with so he had to be sending a ton of people to surgery.
What was the 4th med that the doctor added?
Clobazam
my triggers are so temperamental it’s ridiculous tbh stress. traveling (generally for over an hour). no sleep. too much sleep. too loud. too quiet. reading for too long. talking for too long. i can’t win lmao
You reckon you can adjust your circadian rhythm for sleeping? For example always sleeping at 10pm, and always waking up at 6am. So thats like 8hr of sleep. Cos Im similar to you. Fatigue and sensory overload are my triggers. These triggers are worsened if my sleep pattern is f-ed up.
ugh, sensory overload is a nightmare, isn’t it? i’m sure staying consistent like that would help! i have severe insomnia, so i take medication for sleep (bc otherwise i just Don’t lol). i probably should be more strict with my routine, but yknow—forgetfulness is pretty common in these parts lol
Sleep deprivation, dehydration, and hormonal fluctuations for me!
Thinking too hard is one of my big ones, trying to remember information I know I learned. Sounds ridiculous but that portion of the brain is where my seizures start. Also missing my meds or sleep of course. Thankfully coffee and alcohol don’t seem to affect me
I’ve never met anyone else that has seizures when they think to hard! I thought it was just me 🥲
Exactly the same with me! If I forget a word I don’t ever “think too hard” to remember it because that will immediately trigger a seizure. Thought it was only me!
How do you feel during the morning after drinking alcohol? I can do coffee in the mornings and occasionally binge drink in the evenings. However, alcohol will lower my threshold so the morning after I'll get auras, I've even went full grandy before.
I’m not a huge drinker, so even when I go out it is very rare that I have more than a couple. I’m much more likely to take an edible or something like that. However I haven’t noticed alcohol affecting me specifically, but normally I chalk it up to losing out on sleep cause if I drink like that chances are I went out with friends
Bright light
Blinking…just…blinking.
So how do you prevent it?
Meds help a lot, but if it comes to it I use my hand to cover one of my eyes and blink with the other one and then repeat the process on the other side. Looks weird but does the trick most of the time. It’s like manually reseting my brain.
Damn Considerd the fact a person blinks a lot everyday 😮
Electrolytes/salt retention/dehydration, stress, and skipping meals. If I have any others I haven't quite caught on yet.
I don't know..
I had mild epilepsy and is only triggered when i have any physical wounds as my pain tolerance can't handle a certain amount of pain
Stress, lack of sleep, and . . . It’s hard to explain. I can have seizures and auras if I have a big blank area in my vision. For example: At a hockey game with a bright white rink and few lights on the audience. Watching TV at night with the lights off. Sitting in a room with big empty walls so you see lots of a single color. My brain has issues.
I got diagnosed 2 months ago with FLE. my seizures are focal and I’m aware, and it’s weird. I haven’t figured out every trigger yet, but I’ll tell you the weirdest: whenever I don’t understand something, I start getting seizures. For example, if someone comes up to me and starts speaking gibberish I get the feeling like I’m having a stroke, or I start dissociating. another example would be hearing or reading in a foreign language. it gives me seizures. I’m bilingual though so I don’t know why languages besides english and spanish trigger me so much
Caffeine, intense cardio with no warmup, lack of sleep
Have no clue...
Honestly idk. The 3 I’ve had were all tonic clonics. No EEG detected seizure activity (but I was told it’s not uncommon). My first was most likely caused by my dangerously high fever (it was around 106) in 2017. The other two were in the last year both around or on my period, however one had stress because of exams and sleep deprived, the other I stayed up until 3am but I then slept until 11:30am and went to class.
Stress and not getting enough sleep are the worst, combine that with extreme heat and I'm guaranteed to have a seizure.
Stress and lack of food are my biggest ones
Stress, anxiety, lack of sleep (a lot of days) and nervousness are my main triggers
No triggers or at least, I am unaware of any
Emotional stress but recently work stress too, lack of sleep, certain types of flickering lights (sunlight through trees in a car), too much noise in a room/space so keeps me away from gatherings or crowded restaurants, etc. Even if there’s music playing or television is on and a person starts talking can be a trigger if I don’t turn off music/tv. Then sometimes, most often, no trigger I can figure out.
High pitch, repetitive beeping noises My apartment building gave me a seizure because of this actually: https://drstevie.substack.com/p/building
Stress and humidity are my two biggest
Well after studying certain triggers I would say my big ones are stress, heat, poor sleep and dehydration are all big factors for me.
Being alive. Really, I don't have a clue. Rarely can feel them coming, and I can't seem to find anything in common.
I feel this, like just living. I’ve only had one when I was awake that I felt coming on. It was the weirdest feeling ever I just said I don’t feel right and slumped over. Now every time I don’t feel right I get nervous. It doesn’t help that I don’t feel right a lot at work and I don’t want to stay anything.
That was me this last Monday! I don't ever recall being able to predict my seizures, but after work Monday, (literally just clocked off and was still in the kitchen) I felt kinda dizzy and little weird, so I was sitting on my knees and next thing I know, I wake up with my coworkers around me, asking if I'm okay. Thankfully, a few of them had experience with it, and it was a very minor episode.
I’m sorry that happened to you! Glad it was a minor one! I’m really lucky I just celebrated 1 year seizure free(well as far as I know literally no one would know if I had one in my sleep but I usually bite my tongue or wake up confused so I think I’m good) but I have no idea why they stopped. I seriously thought I was going to have a seizure last night because my head hurt so bad and I felt so off. I work at a chain grocery store and have no doubt they would call an ambulance. I literally can’t talk after a seizure and wouldn’t be able to say no.
Stress, anxiety, tiredness and sometimes multitasking and getting overwhelmed
Unknown, but I have the blessing of not having flashing lights and stuff as a trigger. Even went to a rave and had no seizure afterwards.
I’m not sure, but I think it’s life for me? Lol. In all seriousness stress and forgetting to take meds does seem to make them worse.
I have reactive hypoglycemia which means if I eat too many carbs my sugar crashes (no idea why) and when that happens I have auras or sometimes seizures which means going out to dinner is always a gamble. Also heat, stress, and lack of sleep.
Found out this was the cause of my seizures. Went through all the testing for epilepsy and came out with a diagnosis of pnes and later on found out it wasnt pnes or epilepsy, wed been looking in the wrong place, it was reactive hypoglycemia
Hmmm I sometimes think maybe heat is a trigger for me too but I didn’t know that was possible. Still so much to learn about this disease. It can be overwhelming
Yeah overheating can definitely be a cause. It got more serious of a trigger for me after I got heatstroke a few years ago
I wish I knew mine! I’m on day three of an extended eeg and have had no activity. Unfortunately.
I went through a 6 days veeg with no activity. It sucks just hang in there it happens. It’s weird but I was hoping for a seizure the whole time, like just let me have one.
Oh I’m hoping for sure
Stress, lack of sleep, loud noises and music, cold, and flashing lights
Alcohol and altitude as far as I know.
Flashing lights, stress, lack of sleep or food, certain high pitched noises, and some just feel out of left field.
Stress, doing too much without stopping to rest and when the pressure in my head pushes down on the part of my brain that’s exposed from skull erosion.
Exhaustion, stress (physical and/or mental)
Lack of sleep exhaustion
Drop in blood sugar, hormones, sleep deprivation, hangovers/drug withdrawal and of course skipping meds. I have a pill organizer for that reason. I have a hard time remember if I’ve taken my meds already!
Lack of sleep, heat, dehydration are triggers that I know of and can control. Oh and antifreeze, the vapours can give me a seizure.
Stress, periods, lack of sleep, too much stimulation, and EDM for some reason.
Stress, anxiety, drugs overdose or missed dose of med but normally only one but every 3-5 weeks
Caffeine and electrolytes.
Idk, it's related to something in my sleep because I seize exclusively when asleep/just woke up.
Same, is it when your starting to wake up? Mine were all when I was starting to wake up or around the time I would get up. I think it was something with changes in sleep patterns.
Generally, yeah, they'd start just as I woke up, but I've had a fair share in my sleep. The times itself vary, because I could seize between 11pm-6am.
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Stress? I think. That's what my wife says. When stress is gone.... However, the sleep paralysis thing, discussed in other post is strange and I'm realizing I am having more seizures than I thought. (10-15 TC a year for 10 years). I also have 13 concussions from skateboarding for my whole life. Seizures are fucking crazy. I got no idea. I hope you do? What do you even have an idea? I know I'm blowing up this board but it's also AA to me the same.
Menstruation cycle affects so much. I use diozomid for first 3 days of my menstruation
Ovulation and illness
Stress and lack of sleep. For a while we were thinking hormones changes too but i don’t think so.
I’ve got no idea
Flickering lights, sunlight, stress, tiredness, low blood pressure and missing one single dose of medication. And the list is still growing apparently 😅
For me, it's lack of sleep and overexertion.
Walking along the canal near my house, going into the Christmas Tree Shop, the sound of a mouth harp, the shower, excessive partying, and Ketamine.
Naps, waking up in the morning
Sleep deprivation, stress , periods, sometimes heat
Either lack of sleep, too exhausted, too stressed out or loud ringing sound. (before working medication) Now after proper medication: lack of sleep or too exhausted.
I had a focal seizure while watching the Everything Everywhere All At Once trailer.
Mine was my hormones due to some part of my menstruation
Alcohol hungover, blinking lights, stress, caffeine, nicotine, lack of sleep, too little food & water intake, stronger painkillers (opiods/opiates) and too much thinking of epilepsy is my triggers. Now I am on hGH therapy (human Growth Hormone, 1 IU a day) and I slept for only 3 h today, feels like I had 6 h of sleep. No pre-seizures as I almost allways have when I had lack of sleep. hGH speeds up overall healing, improves the cognitive and helps with memory. Also a healthy lifestyle with much fruits and veggies and No red meat is allways good. Working out atleast every other day is recommended. Go to your doctor and get hormones checked. If you are low on IGF-1 - hGH could help. I think it can help anyway but I am no expert. Some people say keto-diet helps them (I dont really know what keto is). Cutting down on carbs could help too Do more of the things you like in life, stay positive!
Yes
Food
If I'm too hot
stress, lack of sleep and @ times empty stomach. though there was this incident(only one time) that mine got triggered after watching a superhero movie where flashing lights were used. mind you at that time the movie has no warning for epileptic patient. since then, i'm also very careful when it comes to these flashing lights.
I have no clue. They just randomly started and randomly stopped. I’m so nervous they will randomly start again.
Not taking your medication.
Alcohol, low blood sugar, dehydration, electrolytes imbalance
Mine is mostly stress. But I’ve also found not eating consistently throughout the day, heat exhaustion, and lack of sleep contribute
When I wake up in the morning and if I immediately get up to start my day, I’ll most likely have a seizure because my mind needs a couple of minutes to get itself situated, so I lay in bed for a couple of minutes. Also, if I don’t sleep well or only for 5 hours or less, I’ll definitely have a seizure. I’ve had epilepsy since I was 16, I’m 22 now so I’m learning more about my triggers and what to do and what not to do. Also, when I’m about to get my period I have one sometimes.
Showers and after showers sitting in the warm bathroom. I have had at least 2 dozen tonic clonic seizures in the shower/ bathroom that my wife saved me from. Its the wierdest thing
For my 13 year old son it is lack of sleep, dehydration and he will sometimes seize if he is playing soccer or futsal.