Chat and Community Forums Closed

Due to the popularity of social media, we have seen decreasing engagement on our forums and chat. Please know we want to keep talking to you about epilepsy, seizures, and what you need. We want to stay connected with you.

Community Forum

What do you feel?

I am very sorry to ask, and I apologise if this is too personal. I would just like to ask what do you actually feel during a seizure. How do you know when you have a seizure - I hear that epileptics can smell rotten eggs, or burnt rubber. Are you concious during a seizure, and do you realise that you are having one.

Thank you, from Amrou

Comments

I feel like im falling super

I feel like im falling super fast.  Ive been skydiving a few times and when i have an episode.  I feel like im falling at first. But faster than a free fall......Then i stiffen up and cant move for about 10 seconds.  I seem to be able to pull myself back but that is hard to explain.Every event i have starts with me feeling like im falling........

Hi I’m sorry if this upsets

Hi I’m sorry if this upsets anyone but I would like to know if what I experienced was some sort of seizure. I woke up to experience a noise in my ear similar to someone blowing into it, I sat upright and my vision was double and sort of staggered. The best way to describe the pain in my head was a bomb about to blow up and there was a pain beeping quicker and quicker in the middle of my brain and it felt like it was ready to explode. I found it hard to breathe and my significant other could hear my heart beating from the other side of the bed and I could barely move. When I was able to move it was hard to see and my eyes were very droopy still seeing double. I sat beside the door to get fresh air struggling to snap out of it and trying to get to grips with what was going on. I then proceeded to throw up and my head was still in immense pain. It calmed down a slight bit so I tried to sleep it off, I woke up in the morning and up until midday I had a headache and felt tired. Thanks to anyone who lets me know

May I speak with you

May I speak with you privately?

I had a bad one yesterday and

I had a bad one yesterday and here's this one felt I like floated out of chair and slammed on the bed then I was stuck barley take a breath could not move first time I had a partial seziure really weird to me 

I have mine when I'm starting

I have mine when I'm starting to wake up. I'm usually aware I'm having a seizure, but there have been a few I dont remember and just wake up several times afterwards in a panic and I dont know why at the time. During the ones I'm aware of I typically enter a dream like state where I've thought I've been abducted by aliens(was watching a lot of X-Files at that time), that theres a doctor talking to someone who's taking care of me about my seizures and dosage, I've walked down a dark cavernous hallway with a strong female person who tells me I know what's going on and reassures me, and some times theres no dream. I get a high pitch ringing as I'm finishing my seizure and finally it stops and my limbs get a weird uncomfortable tingle. I'm always out of breath, and I used to cry all the time. Now I understand what's happening, my husband is almost always there. I always need to pee after, but cant walk for about half hour. Talking is difficult, no coordination, cant roll over in bed. It's hard, but its mine so I need to deal with it. I'm very grateful for my family, friends and coworkers who support me to the end. 

What you experienced sounds

What you experienced sounds just like sleep paralysis. People can get a few episodes in their lifetime but myself I have narcolepsy so I have experienced a lot. Look it up, I hope it gives you more clarity. 

I saw my friend have one a

I saw my friend have one a year ago and it was the scariest thing I ever seen, if someone ever stutters on front of me I panic thinking their goning to have a seizure, but when I asked him what does he feel when he’s having one he told me, he can first( not always) taste steel in his mouth ( like he’s sucking on a spoon) but he says when he going into the seizure it feels like he’s getting shocked in his brain but the shock is going through his body. His suizure that day lasted 20 minutes before he came out of it. I’ve never seen anything like that before and to be honest I didn’t know what was happening, he just stopped mid conversation and started staring at me and he pointed so I thought he was pointing at something on my wall but then he started twitching and moving his hand real fast so I put him on his side and called my mother to ring an ambulance. He wouldn’t go in it and I found out later that he doesn’t take medication for it and has about 4 seizures a weeks. I worry about him at lot we fell out because he wouldn’t take anything for it and I was too scared too see it happen again. 

Im awake i feel like im

Im awake i feel like im falling asleep and then my legs and arms lose control im 41 the first time i had one i was in kindergarten i passed all the way out i got weird feeling like im falling

I have had three seizures in

I have had three seizures in my life. Two of them I don't remember as they happened when I was under 10 and my entire childhood is gone. The latest one happened three days ago. I was brushing my teeth when I felt light headed. I finished what I was doing, and as I was walking back to my bedroom I felt my left are starting to shake and tingle. I made it to my bed and almost immediately collapsed on to it. I curled and covered myself with blankets as at this point I was freezing. I felt so tired. Unbelievably tired. My whole body felt heavy, like I was encased in concrete. I started to shake harder, like when you shiver really hard from being way too cold. I vomited a lot, and if it wasn't for my boyfriend knowing what to do I would probably not be alive. I woke up 13 hours later in the hospital, intubated. They told me that they don't know what happened, but that I had respiratory arrest because of complications from Pneumonia. They didn't seem to believe me when I told them about the seizure, but they did offer a referral to a Neurologist. So to answer your questions one at a time."What do you actually feel during a seizure?": I felt tingling, and short of breath. I felt very cold and completely unable to move/speak."How do you know when you have a seizure?": I didn't know that I was going to have a seizure, but I knew something was going to happen and very very soon."I hear that epileptics can smell rotten eggs, or burnt rubber.": I did not."Are you concious during a seizure.": I felt everything. I was completely aware for the seizure, but I lost consciousness before the paramedics arrived. "Do you realise that you are having one?": I did not, and it wasn't until I revisited the event over and over that I realised, 'Wait a minute, that was a seizure.' I had even forgotten that I had them in the past for so long that my boyfriend of three years didn't know. 

Not much information I can

Not much information I can give. I've had three throughout my life. One per year and it's been very consistent. The feeling though. Well as I've progressed with them I become more and more detached with myself Everytime they happen. It's almost as if I'm loosing who I am. Memories seem missing and thoughts out of place I've been mentioning things that happened way farther back then what I think they did. Things that happened 3-4 years ago feeling like just last week. I'm unsure of this and I'm not sure if anyone else feels this way but thought pointing it out here would be a good idea. I tried looking online and didn't find much. But I don't feel like the person I was before and Everytime it happens. I feel more and more lost.

first see a doctor and if

first see a doctor and if everytime seems fine, mri and tests come out fine, it's most likely stress, happened to me when I was super stressed, your brain contains cortisol and when you're overthinking for a period of time, cortisol rises and you start to feel very anxious, scared, confused, and crazy, manage your stress by smiling more, doing something you love, don't think about those issues and in a period of time, you'll be fine, i felt pain all over parts of my body, burning pain and anxiety lasting hours, feeling like i was going manic, it was my stress levels because everytime i went to the hospital, all my blood tests and urine tests would come out fine, but my body would ache and sting in certain places, you might not think its stress, you might think what am i stressing about? but even I thought the same, sometimes it doesn't have a reason.

I've had an epileptic

I've had an epileptic seizures since I was bor and I can tell you the order that I've always seem to feel give me about the 22n seem to fit to give me about a 20  warnin I've had metallic flavor in my mouth but in general it almost feels like somebody just put the oxygen mask on you and it just kind of spreads across my face in that way.. I often try and recall wh images I saw or dreams that I might have had in my seizure the best I could have ever put it is like an extraordinarily fast strobe light that's showing pictures of things that my brain can't even comprehend they're moving so fas other than that one tim I've never been able to remember anything that I've seen while I was in a seizure

Hi... Analogy time... Ever

Hi...

Analogy time...

Ever fall asleep in a rooom (say, in front of the TV) and wake up with no idea how long you'd slept? = a 'complex partial' or a 'generalized' seizure since a surge in electricity from both sides of one part (=complex partial) or throughout the entire brain (generalized) also causes unconsiousness.

So it's moot how the seizures manifest themselves (that fact has value only to the observer...not to the one having the seizure) all are equally devastating to the patient.

I know I've had a seizure if I'm missing time (there are about 40 variations of epilepsy). Sometimes I don't know I've had a seizure (like our lack of memory for the dreams we have each night, amnesia often follows seizures too)

If you are really curious, I'd suggest you go to www.epilepsy.com as it's an excellent site and can answer your questions.

~sol

durnit - don't know why this

durnit - don't know why this posted twice !! Sorry bout that

Barbie

Re: What do you feel?

Hi Amrou,

This is a very interesting question. There are many different seizure disorders, and many of them manifest themselves differently. I have a few different types of seizures, and can only answer from my experiences:

1. I have myoclonic seizures every once in a while. These are seizures which manifest as muscle spasms or jerks. Mine are usually in my left leg, or in my right arm and the face. They are not painful to me, just very annoying. sometimes, I have only one or two at a time, sometimes they continue in a series for quite a while.

2. I have simple partial seizures, and mine usually are a strange sense of dizziness, detachment, or hearing music when none is present.

3. I also have complex partial seizures. Sometimes, they are preceded by one of my simple partial seizures, sometimes not. Sometimes, I get a strange feeling in my stomach, that rises to my chest. After that, I have no idea what happens. My family says I stare off in the distance, and fumble or fidget with my hands. Sometimes, my hands shake. During the seizure (usually no more than a couple of minutes), I am totally unaware of what is happening as my consciousness is affected. Typically, after a seizure, it takes me a while to really gain full awareness back. I am usually very tired and sometimes have a bad headache. The only way I am 100% certain I have had a complex partial seizure is if someone is with me and has witnessed it, or if I have dropped something and am missing my memory for what has happened. I have fallen a few times during these types of seizures.

There are many, many different types of seizures, including some where people get a smell "aura", such as you describe. Check out the main website information on types of seizures - located at http://www.epilepsy.com/epilepsy/types_seizures.html for more information.

((( hugs ))),
Barbie

***************************************
"We are each of us angels with only one wing, and we can fly only by embracing each other." -lucian de crescenzo

Re: What do you feel?

The type of seizures I have is called psycho-motor ones. Before I have a seizure, I have a aura, just like the last person said. I used to have so many, (auras), that thats why I never tell anyone when I'm having a warning sign. I would experience a aura, than not have a blackout seizure. But never have a seizure without first having a aura. I have about 20 second notice to get to safety.

The smell of auras aren't eggs at all. To be honest with you, I honest to god can't explain what it smells like. everyone in my family already asked me a million times and I really can't explain it. its just an abnormal smell.

I can easily tell when I had a blackout seizure. Because when I wake up and come back to reality, I have at least 1 bruise on my body somewhere.

Re: Re: What do you feel?

Hi
I will try and explain what happens to me before and after a seizure I appologise if it is a bit confussing.

In most cases I get a warning before I am going to have a tonic clonic seizure, but sometimes I get an aura on its own I think this is a simple partal seizure.
During the aura I will feel disconnected from things. I kind of know that there are things and people around me but I can not connect with them. I get a strange heat sensation rising up inside. I also start to feel very tired. People tell me that I go very flushed in the face.

I usually know that I have had a seizure beucase I have bitten my cheek or toung. I am confussed take me a while to een figure out my name. I am also tired and I have a very bad headache and fell sick and sometimes I am sick.

I hope that this makes sence
take care
from Honeybear

Re: Re: Re: What do you feel?

Hi from Joe Dupuis

I've also felt the inner heat in my neck then it rises up to my head. I've tasted metal in my mouth and was told my face appeared flushed.
Then I'm drained of all energy and must rest.
Sometimes I feel deja vu,sometimes I've noticed doublevision.
Mine are known as temporal lobe seizures

Re: What do you feel?

I have only had two seizures that I know of, but have also blacked out a couple of times and puked immediately.
Anyway, I had one seizure when I was watching tv, and I had one when I was watching a movie, it almost felt like an Alfred Hitchcock movie when they happened, like the scenes where the camera focus's in and out at the same time, its real bizarre and then all of a sudden my cheek on the the right side of my face started to shake like crazy. I am almost positive that I prevented an additional seizure by walking out of a room during a film strip presentation because I felt oncoming symptoms. Another weird thing is that I have serious Deja vu a couple times a year, I heard Deja Vu and seizures are related.

Our Mission

The mission of the Epilepsy Foundation is to lead the fight to overcome the challenges of living with epilepsy and to accelerate therapies to stop seizures, find cures, and save lives.

 
24/7 helpline