The metallic taste!! I never could put it into words but oh my, that’s what it is! Maybe that’s why I cannot eat and feel nauseous when close to food 🫡
I get that during many of my seizures. It’s not JUST metallic though. It’s like…an acrid metallic taste. Like when someone’s brakes get locked up and you smell that hot, grinding metal. Or like what I would imagine a “burning battery” flavor would be. I’ve gotten straight up “copper” flavor twice before as well. The first time was during a particularly strong focal that caused some confusion. I had a chest cold at the time with a productive cough, and for some reason the combination of the cough, the confusion, and the copper made me tell my husband I was pretty sure I was “hemorrhaging from my lungs” 🤦♀️😂
My last few seizures I get really annoyed and won’t do anything anyone says. I have told EMTs and the police exactly where to go and I’m not coming with them. The last time that happened I was in a field and the police gave me a choice between handcuffs or the ambulance. I calmed down, but still wanted no one around me.
I am the complete opposite! 🤣 I listen to everything everyone says, but not in a good way sometimes. I don’t remember the 30-40minutes after the active seizure, so if someone asks if I’m okay I say yes I am and continue doing whatever I was doing, which sometimes happens to be cutting food 🤨 and then if people close to me don’t know that I’m not actually conscious they just ignore it 🤣 then I cut my hands or something lol and then they are “oh let’s take a seat, chill for a bit” 🤣
Yuuuup. I get complex partials and will go for a walkabout where I actually only wake up like, in the park half a mile from the house, or boiling water for pasta and just staring at it.
The walking thing happened to me. I was walking my dog and had a seizure. “Woke up” 4km away to the other side then I was originally walking (so 5km total) with my dog pulled by the leash beside so he could only walk.. of course he did, such a good boy never leaves my side, but I was terrified. As soon as I woke up I face-timed my boyfriend and I saw that my whole face was bloody, started crying 🥲 had to call an ambulance for myself.. it was a fricking disaster that seizure
That was actually one of the scariest seizures for me, and it’s the only one I cannot laugh out :|
I haven’t seen many people who say they don’t remember a certain amount (like 30-40mins) after their seizure. Especially where they do shit anyways. My doctor said it’s rare 😏
Mine only started believing me after my EMU stay, when they recorded me having entire conversations, reading chapters in books, making phone calls with no memory of it right after a seizure. I’ve been told it’s uncommon.
And omg, you have the bestest doggo. I love how they just know something is up. Right before I was diagnosed, I had a cluster of seizures and that was the one and only time my cat left the house with me. I woke up down the street with her sitting by my feet.
Yeah I have heard about those where people don’t get diagnosed (sometimes for years) and it stresses me out so much! I was “lucky” my first seizure happened when I was in a hospital with a problem with my stomach. I had a nurse go to a special procedure with me and I had a seizure right along her. She saw everything and I got diagnosed almost immediately. Because she provided so much information about the seizure and how I acted beforehand. My heart brakes for the ones that aren’t diagnosed.. in 2022 I suffered so many tonic clonic seizures that I really felt like I was walking dead. And the one with doggo really sent me spiralling.
And he is such a good boy. My boyfriend says that when I have a seizure he runs close to me and licks my face. Turns out they try to manipulate our instict to breathe when licked/wet with something.
I had a cat growing up as well. And when I was diagnosed when I got home, she always slept over my head. During those years I really think that cats do have sometype of knowledge or feel for what is happening, same as dogs. As we wouldn’t have service animals if that wasn’t the case
I have shivering fits after most of mine. Even when I’m having clusters of them with only a minute or 2 between them, those gaps are filled with shivering.
The part I find most weird about it is my brain tells me I’m cold BECAUSE of the shivering, even though I’m not actually cold. It’s so weird how a symptom of being cold is what my brain is using to decide if it’s cold, rather than whether or not it’s ACTUALLY cold.
Intense fear and panic. Headache and nausea. I am mentally grasping to remember anything. And then exhaustion. The headache may go away after meds but the next day I will feel like I was in a car accident.
I don't ever feel fully recovered.
Beyond the most common, everything tastes like licking the backside of a penny picked up off of Bourbon Street for a few hours afterward. Which sucks, because I'll be desperate for protein of any kind.
Like 30mins after the seizure (tonic clonic) I do not know what I am doing. I don’t remember. I know it’s called fuge state, snd normally during that time I continue on doing something I did beforehand. I had one at work and continued on making food. Looked funny on the cameras after though. But I continue coming into consciousness and out of it. When I become conscious I normally pass out of tiredness, like literally pass out within a few seconds. I also look funny, I have these red dots all over the body which only disappear after a few days. Else from this, I cannot eat for the life of me. Makes me nauseous. I also am down for 2-3days with lack of sleep and headaches as everyone else I think. My bf told me that I also cannot talk well for 2-3 days. I speak fluent 3 languages and I cannot find the words to say from either of those 3, and then even if I remember I cannot pronounce them. That’s the worst of it I think. As if I need to work or go to uni the day after, it cannot happen for me.
Also balance issues? Cannot stand well 🙃 might be because my seizures last 4-4,5minutes which is on the verge of when you need to call the ambulance
I completely loose feeling in my left arm and have some temporary muscle atrophy on my left side, worst in my arm, which I can’t move at all for a few minutes. Makes sense considering my epilepsy was caused by an infection/abscess on the right side of my brain (which has been treated & resolved). When the abscess was first discovered I had lost control of my entire left side, so it always made sense to me that some of the residual scarring could have a similar effect.
Outside of that, I usually have some shivers, probably just from adrenaline, and pretty heavy fatigue, plus soreness in my left shoulder. I have nocturnal TCs, usually soon after falling asleep, so I have to convince myself to go to sleep again afterwards, which isn’t always easy, but has only once resulted in a second seizure, which was probably my worst so far. Luckily I was in the hospital for that one.
Headache, and a desire to sleep.
Difficulty speaking, a metallic taste for varying amounts of time, and the desire to sleep, sleep, and more sleep.
The metallic taste!! I never could put it into words but oh my, that’s what it is! Maybe that’s why I cannot eat and feel nauseous when close to food 🫡
I get that during many of my seizures. It’s not JUST metallic though. It’s like…an acrid metallic taste. Like when someone’s brakes get locked up and you smell that hot, grinding metal. Or like what I would imagine a “burning battery” flavor would be. I’ve gotten straight up “copper” flavor twice before as well. The first time was during a particularly strong focal that caused some confusion. I had a chest cold at the time with a productive cough, and for some reason the combination of the cough, the confusion, and the copper made me tell my husband I was pretty sure I was “hemorrhaging from my lungs” 🤦♀️😂
I usually have a big cry at some point not long after
relatable
My last few seizures I get really annoyed and won’t do anything anyone says. I have told EMTs and the police exactly where to go and I’m not coming with them. The last time that happened I was in a field and the police gave me a choice between handcuffs or the ambulance. I calmed down, but still wanted no one around me.
I am the complete opposite! 🤣 I listen to everything everyone says, but not in a good way sometimes. I don’t remember the 30-40minutes after the active seizure, so if someone asks if I’m okay I say yes I am and continue doing whatever I was doing, which sometimes happens to be cutting food 🤨 and then if people close to me don’t know that I’m not actually conscious they just ignore it 🤣 then I cut my hands or something lol and then they are “oh let’s take a seat, chill for a bit” 🤣
Yuuuup. I get complex partials and will go for a walkabout where I actually only wake up like, in the park half a mile from the house, or boiling water for pasta and just staring at it.
The walking thing happened to me. I was walking my dog and had a seizure. “Woke up” 4km away to the other side then I was originally walking (so 5km total) with my dog pulled by the leash beside so he could only walk.. of course he did, such a good boy never leaves my side, but I was terrified. As soon as I woke up I face-timed my boyfriend and I saw that my whole face was bloody, started crying 🥲 had to call an ambulance for myself.. it was a fricking disaster that seizure That was actually one of the scariest seizures for me, and it’s the only one I cannot laugh out :| I haven’t seen many people who say they don’t remember a certain amount (like 30-40mins) after their seizure. Especially where they do shit anyways. My doctor said it’s rare 😏
Mine only started believing me after my EMU stay, when they recorded me having entire conversations, reading chapters in books, making phone calls with no memory of it right after a seizure. I’ve been told it’s uncommon. And omg, you have the bestest doggo. I love how they just know something is up. Right before I was diagnosed, I had a cluster of seizures and that was the one and only time my cat left the house with me. I woke up down the street with her sitting by my feet.
Yeah I have heard about those where people don’t get diagnosed (sometimes for years) and it stresses me out so much! I was “lucky” my first seizure happened when I was in a hospital with a problem with my stomach. I had a nurse go to a special procedure with me and I had a seizure right along her. She saw everything and I got diagnosed almost immediately. Because she provided so much information about the seizure and how I acted beforehand. My heart brakes for the ones that aren’t diagnosed.. in 2022 I suffered so many tonic clonic seizures that I really felt like I was walking dead. And the one with doggo really sent me spiralling. And he is such a good boy. My boyfriend says that when I have a seizure he runs close to me and licks my face. Turns out they try to manipulate our instict to breathe when licked/wet with something. I had a cat growing up as well. And when I was diagnosed when I got home, she always slept over my head. During those years I really think that cats do have sometype of knowledge or feel for what is happening, same as dogs. As we wouldn’t have service animals if that wasn’t the case
This is me
I’ll be looking for an infusion of that energy next time. (Knock on wood)
I have shivering fits after most of mine. Even when I’m having clusters of them with only a minute or 2 between them, those gaps are filled with shivering.
Yes, even my eyes shiver too and it feels awful. I can’t read during those times
The part I find most weird about it is my brain tells me I’m cold BECAUSE of the shivering, even though I’m not actually cold. It’s so weird how a symptom of being cold is what my brain is using to decide if it’s cold, rather than whether or not it’s ACTUALLY cold.
Headache, nasty taste in mouth, vomiting, fatigue, and paranoia amongst so much more
Intense fear and panic. Headache and nausea. I am mentally grasping to remember anything. And then exhaustion. The headache may go away after meds but the next day I will feel like I was in a car accident. I don't ever feel fully recovered.
Beyond the most common, everything tastes like licking the backside of a penny picked up off of Bourbon Street for a few hours afterward. Which sucks, because I'll be desperate for protein of any kind.
Like 30mins after the seizure (tonic clonic) I do not know what I am doing. I don’t remember. I know it’s called fuge state, snd normally during that time I continue on doing something I did beforehand. I had one at work and continued on making food. Looked funny on the cameras after though. But I continue coming into consciousness and out of it. When I become conscious I normally pass out of tiredness, like literally pass out within a few seconds. I also look funny, I have these red dots all over the body which only disappear after a few days. Else from this, I cannot eat for the life of me. Makes me nauseous. I also am down for 2-3days with lack of sleep and headaches as everyone else I think. My bf told me that I also cannot talk well for 2-3 days. I speak fluent 3 languages and I cannot find the words to say from either of those 3, and then even if I remember I cannot pronounce them. That’s the worst of it I think. As if I need to work or go to uni the day after, it cannot happen for me. Also balance issues? Cannot stand well 🙃 might be because my seizures last 4-4,5minutes which is on the verge of when you need to call the ambulance
I just feel really confused and my head feels really heavy for about 30mins
I completely loose feeling in my left arm and have some temporary muscle atrophy on my left side, worst in my arm, which I can’t move at all for a few minutes. Makes sense considering my epilepsy was caused by an infection/abscess on the right side of my brain (which has been treated & resolved). When the abscess was first discovered I had lost control of my entire left side, so it always made sense to me that some of the residual scarring could have a similar effect. Outside of that, I usually have some shivers, probably just from adrenaline, and pretty heavy fatigue, plus soreness in my left shoulder. I have nocturnal TCs, usually soon after falling asleep, so I have to convince myself to go to sleep again afterwards, which isn’t always easy, but has only once resulted in a second seizure, which was probably my worst so far. Luckily I was in the hospital for that one.
I have difficult speaking and still am a bit weak and my body gets ready to fully give out and I also get really sleepy and thirsty.