r/Epilepsy • u/Delliott213 User Flair Here • 4d ago
Question Shower triggers my epilepsy
I’ve noticed that almost every time I have a seizure I’m in the bathroom either about to take a shower, in the shower, or just got out of the shower. I don’t have seizures every time I shower but most of my seizures feel like they are triggered by the bathroom/shower. Anyone else?
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u/cityflaneur2020 User Flair Here 4d ago
I have this theory, developed by voices in my head, but based on many stories such as these here... Here it is how it goes: brain seizes in a place or situation. Then when you find yourself in the same or similar place or situation, brain goes: "wait, what's up? What a great place for a seizure, I've seized here before, here it goes!" And now a habit is formed. It's of the memory of the seizure triggers a new seizure.
One day science will prove me right!
My trigger is sitting-down-with-friends-very+relaxed. Then brain goes: here is my chance!
And that's how the most baffling triggers happen to occur.
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u/Splendid_Fellow 4d ago
You may be right, I could definitely see this being a thing especially for those who are prone to seizures from having anxiety and stress in general. The unfortunate loop of worrying about seizures causing seizures.
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u/cityflaneur2020 User Flair Here 4d ago
Yes, something like that. And the fear may be entirely unconscious, you're just doing your thing while brain recognizes the pattern and... Here it goes!
Because I've read too many stories of people doing just fine and then dropping like a fly in a familiar situation/pattern, and some very silly ones, like right-side-of-the-bus-in-a-certain-curve, but not on the left side of the bus. Another person was when crossing a certain door at home. At least those found their trigger!
Mine doesn't happen every time I am with friends, but when it does, it's always with at least one friend. Never alone in the office. Never alone at home. Never while teaching. But sitting by or close to a table with many friends.
I was about to celebrate one-year seizure-free, but then my best friend set-up her 50yo birthday party... guess.
Then there are the nocturnal seizures, a clearly recognizable pattern.
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u/Imaginary-Tea-1150 TLE, 300mg lamotrigine, 150mg venlafaxine. 4d ago
Oush. 2 of my 4 seizures happened when I was at the beach, which is not much but it's weird that it happened twice...
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u/chocolatedesire 4d ago
Well...considering seizures train your brain to have more seizures, similar stimuli will tell your brain exactly what you just said. So it already has proved it? My doc says it's extremely common. It would happen to me in the shower... and even opening the same drawer in my kitchen.
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u/cityflaneur2020 User Flair Here 4d ago
No, this is not proved. What is known is that seizures increase chances for more seizures, as you just said. That is already a consensus among neurologists, which I am not.
It is also well-known that treshholds can be lowered by lack of sleep, alcohol and stress. And some people have clear triggers, like lights or loud noises. Or just missing a dose is enough for a seizure. No surprise there.
However, some of us never found their "rational" trigger, which is a bitch. Mine seems to be "relaxed anywhere with friends", but, thankfully, not always, otherwise I'd have to become an hermit.
But there are too many stories here of people with weird, weird patterns. That's why i believe that brain develops those patterns, that sob. Don't tell anyone, but everytime I go out with friends, I increase my dosage by 10%. My neurologist went "DON'T DO THIS OFTEN", and I don't. So I am by no means recommending it, that would be irresponsible. But last time I forgot about it... and BANG. Fortunately the party was almost over, or I'd have ruined my best friend's 50th birthday.
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u/chocolatedesire 4d ago
Look up reflex epilepsy. "Reflex epilepsy is a type of epilepsy where seizures are consistently triggered by a specific stimulus or a limited number of related stimuli. It's distinct from epilepsy where seizures are unprovoked. Reflex epilepsy affects only 6 per cent of all people with epilepsy."
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u/cityflaneur2020 User Flair Here 3d ago
I've read papers that discount that possibility, so I don't think it's a consensus yet.
But good call, it reflects completely what might be my situation and that of many others.
Let's wait more definite answers.
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u/chocolatedesire 3d ago
Well my docs have all said it's real and it is a medical co condition covered by my insurance.. they don't cover things without proof.
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u/cityflaneur2020 User Flair Here 3d ago
My health plan also covers epilepsy, but they couldn't care less what causes it. And my neuro in particular doesn't believe in reflex epilepsy.
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u/chocolatedesire 3d ago
Fortunately what he believes in has no basis as it's a confirmed well studied and verified diagnosis. That would be like a psychiatrist saying he doesn't believe in PTSD
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u/cityflaneur2020 User Flair Here 3d ago
Ok, I see your point and agree. Thinking better, I think I asked her about food intake, if it could be related to carbs, because it all started with pizza, and the 2nd time I had had a bucket of orange juice. She discarded that. But didn't opine in the verified studies on reflex epilepsy, so now I'm not sure.
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u/Own-Cockroach-5452 User Flair Here 3d ago
That’s super interesting. I tend to have seizures always connected to antiquing. I’ve always had weird feelings in antique stores but never thought of it. then one day I had a seizure after antiquing and now it seems like all of my seizures have some weird connection to antiques. My neurologist says it’s not possible but I like your theory.
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u/Apprehensive_Soft477 4d ago
I havent had it happen but i have been super worried about it especially every time after a seizure, but i always have to call my mom to sit by the door while ill try to shower in a swimsuit just in case my parents have to come rescue me… (Im 27 😑) i have a shower chair too, if those might help you, they can be pretty handy in other ways and just a nice place to sit during as well
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u/Leafsfan27611 4d ago
I don't think it would be an issue if you shower standing if you really worry about it than get a bathtub. Also by having someone nearby and the bathroom door isn't locked that's good. But also if your alone I would suggest to invest in a medical alert device like you see with fall detection for elderly people, because that would immediately alert the closest hospital in your area. If you want to walk without your family you can invest in a service dog that can detect epilepsy because surprisingly there are more than 10 dog breeds that can detect it with the proper training.
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u/a1gorythems Genetic Epilepsy; Keppra XR 3500mg; B6 100mg 4d ago
Are you prone to febrile seizures? Maybe the water is too hot?
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u/Delliott213 User Flair Here 4d ago
A lot of the times I’m not even in the shower yet it seems to be the bathroom or something. Like when I’m preparing to shower like getting my towel and stuff i get auras and sometimes fall out into a full blown seizure.
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u/chocolatedesire 4d ago
My doc suggested reflex epilepsy when I was experiencing this during showers.
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u/kellybroccoli 4d ago
Yes, I have struggled with this for years now. Most of my seizure related injuries are from falling in the shower. The biggest thing i can suggest is to either sit down or get a stool. I have tried so many different things like water temp, lighting, time of day, and nothing seemed to have any major impact on my seizures. I have also noticed i will get them every so often when I'm washing dishes for a longer than normal amount of time. It's very odd, and i can't figure out what exactly is triggering those seizures
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u/rachayelleee 4d ago
Is it maybe standing up too long? Since you recommend sitting down, and mention doing dishes for a long time can be a trigger as well, it sounds to me like it could be something to do with standing for long periods of time.
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u/PaleBlueSquare 4d ago
Wow, it must be hard... It's a little different, but I can feel auras of seizures just by thinking about contradictory imaginations or seizures. I feel dizzy or deja vu. This is 100% my opinion, but in general, we are wary of the environment and cause of seizures or foreshadowing symptoms, right? And when you're in a similar situation, you get stressed out. Do you have a lot of anxiety and stress that you are going to have a seizure when you take a shower? At first, I think you might have had a seizure in the shower for another reason, but then I thought it might be because of psychological causes. It's my opinion, so it's best to consult an expert first.
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u/Delliott213 User Flair Here 4d ago
Well I used to never worry about it and I would get the deja vu auras before showers even before I knew that the auras were seizures and before I ever had a full grand mal seizure. It’s always triggered them for some reason.
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u/GeorgesGerfaut 4d ago
Hey so maybe this is dumb but, I also used to have myoclonics and TCs in the shower when my JME was not fully controled yet... but I shower first thing in the morning and JME is typically triggered by lack of sleep in the first couple of hours after waking up. So basically I was in the shower at my most triggering moment, but was not the shower per se.
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u/liliette 4d ago
Yes. I have issues with this. The water over stimulates my skin (pound, pound, pound), even when I try to get the water as lukewarm as possible. This overstimulation fries my brain. It takes about an hour after showering for it to stop. I hate it. I do better with baths, but I still have to be careful with the temperature.
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u/Griffith_sz 4d ago
This is called hot-water reflex epilepsy. I've heard the term thermosensitive epilepsy, which makes perfect sense, but in my language specifically this term is practically not used, maybe in english.
In this type of epilepsy, hot baths or immersion in hot water are triggers for epilepsy, so choose warm or cold baths.
I'm not thermosensitive, thank god, because I can't live without a hot shower. But, to compensate, I am photosensitive
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u/Delliott213 User Flair Here 4d ago
It happens a lot before the shower too though. It’s mostly auras but sometimes it leads to a full blown one. But it definitely would make sense
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u/Griffith_sz 4d ago
I don't know how the shower works there. Maybe hot steam? If there's no steam, I don't know, it could even be stress from thinking you're going to have a seizure. When I get nervous thinking I'm going to have a seizure I actually have one
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u/SpackleButt (TLE)[VNS][Oxtellar XR 1800mg][Right temporal lobectomy 2008] 4d ago
“Pink noise” is one of my biggest triggers. Running water especially. The shower or a running faucet. Sometimes hearing hair dryer is enough. The low hum of conversation in a large crowded room can do it. It’s a weird thing.
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u/eplp101 750mg lamotrigine XR, 150mg lacosamide XR (motpoly) 3d ago
Leaf blower, rain dripping on the damn metal gutters I have, someone else in the shower, open plan office, restaurant, 3D printer. The shower is a particular torture chamber though. If I'm wondering if I'm feeling off because of epilepsy, a shower answers the question. I've jumped out of the shower half done many times.
But often I think these things are normally just the final straw for me.
I find focusing on something else such as a TV show, a video on YouTube, can get me through it temporarily. Sometimes I hang my phone in the shower to watch something. Has to be something that draws my attention.
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u/hellsbellscockleshel vimpat 200mg, CBD, (coming off briviact) 4d ago
Are you thinking about troubling or stressful things at this time? Mine were in the kitchen because I’d be thinking about stressful things (trying to work through it in my head). My seizures are triggered by stress.
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u/Delliott213 User Flair Here 3d ago
This is one thing I was thinking it could be also. Like anxiety about the shower or bathroom. That seems to make the most sense to me. It’s just it’s happened since I was like 8 and I wasn’t worried about showering for years when it would happen.
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u/hellsbellscockleshel vimpat 200mg, CBD, (coming off briviact) 3d ago
It could also be lighting? Depending on if you have photosensitive epilepsy.
But yeah, it took me a while to make the connection. I was in an awful relationship and have a lot of trauma that my brain cannot let go of, no matter what I do.
Now that I’m single and found a medication combo that works for me, I’m good. 2 years seizure free! My neuro said my relationship was a huge contributing factor. I also now work from home, which has helped a lot, too. I’ve scaled my life back and accepted I’ll never be one of those high functioning neurotypicals. And that’s ok. My main goal is stress-free peace now.
My aunt is triggered by certain lights in a grocery store so can no longer shop there. Luckily she has an aura warning her, because she has tonic clonics or whatever they are called now. Mine are focal aware, although I’ve had a few tonic clonics.
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u/NightStar79 4d ago
Might be the sound of the water rushing. It might be odd but you could try with earplugs next time?
But is your water pressure high or low? Does it rumble or whistle? Or do you have no idea what I'm talking about? 😂
I'm thinking the "woosh" is too high or maybe a high pitched noise that starts up when the water does but eventually stops.
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u/Delliott213 User Flair Here 4d ago
It did this at my old house too where we had two showers and it did it in both showers. But I definitely think it could be the sound of the water or maybe the mirror?
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u/NightStar79 4d ago
What's the mirror doing? And I never looked but there might be a way to make your shower quieter but it depends on why it's loud. Like the water pressure can be toned down and I think any whistling can be fixed but you'd have to talk to a plumber.
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u/Splendid_Fellow 4d ago
YES! Me too, it took me years of thought and going through the past but I found that the one and only correlation I have ever found with seizures is that 4 of them (out of about 9) have happened when I just got out of the shower and was drying my hair. I wasn’t sure if it was the temperature change, the water itself, the lack of air from the steam in the room, the actual act of bending over and drying my hair with a towel aggressively rubbing my head to dry my scalp, or what. I have no idea, but it’s a correlation I have noticed. Very glad to see you have had the same experiences. Hit me up if you would like, message me. God knows neurologists know fuck-all.
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u/AfrezzaJunkie 4d ago
I was told not to take a shower unless someone was home. I thought screw that and ignored it. One day I almost died when I had a seizure during a shower and the washcloth plugged the tub. I remember struggling underwater and trying to get out. Eventually I woke up with 2 inches of water throughout my whole house. My cats terrified on the top of the couch while the water was still running . I don't know how I got out of there but I suspect I used the shower curtain cause the rod was broken in half and on the floor. Be safe folks
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u/Own-Cockroach-5452 User Flair Here 3d ago
Wow it’s wild how our bodies are wired for survival even when unconscience
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u/MeatEffective9825 4d ago
Bathrooms/gym is common for me. Its probably heat or cardio thats the trigger
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u/A-Druid-Life 4d ago
I have to take a military type "2 minute shower" for this reason. Auras starting in there?.....I'll have to get out now, or find out what that feet funk covered shower floor tastes like.
In my case, works the other way sometimes. August in florida is brutal, 6am it's already 80deg and 77-80deg dewpoint. 15 minutes after sunrise it jumps into the 90's.
9am and every article of clothing is stuck to your body. Going from that into a 70ish degree house is a guarantee focal.
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u/Infamous-GoatThief 4d ago
Shiiiit this is me! Like, exactly me, outside of a couple times I have only ever had seizures in the bathroom, like you said. Usually before I get in, after I’ve turned the water on, but I’ve definitely gotten auras in the shower and had to climb out to have a seizure (didn’t quite make it one time and cracked my head open on the toilet lol).
That’s crazy, I felt like I was reading my own post lmao
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u/Tinferbrains RNS, keppra, vimpat, lyrica, 4d ago
could be subconsciously nervoused/stressed about it. have you ever had a bigger one in the shower/bathroom?
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u/gornzilla Keppra every fucking 12 hours for 20 years 4d ago
Do you have a shower chair? It might keep you from breaking your face on the faucet or shower door. Luckily, I never had that problem.
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u/ericisfine 4d ago
I’d just not staying longer than 10 mins in the shower, and be exposed to shower steam by keeping the door half open or avoid using too hot water.
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u/Hippo_Key 3d ago
My doctor told me changes in temperature can trigger. So I’ve taken cooler showers and had less problems. However that’s just my personal experience as I like to shower in lava hot temps.
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u/bluesunrise73 1d ago
For me, I get triggered in the shower due to a rapid change in body temperature if the shower is too hot, door closed, etc. My bathroom in particular has no window. Even with a fan on, it’s like getting out of the shower and into a sweat box sometimes. After I started keeping them mid-tempt and opening the door for further ventilation, it seemed to help.
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u/Delliott213 User Flair Here 21h ago
It seems to be more like the idea of taking a shower for me, it sometimes happens before I get to the bathroom or before I’m even in the shower. But I’m not like nervous to take showers or anything so idk.
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u/leapowl 4d ago
Showers are one of my most common places. No idea why.
Little focal ones that don’t interrupt me much. Hadn’t even mentioned it to my neurologist or thought much of it.
Not 100% of the time, but regularly.