What does a seizure feel like? Am I having a seizure? Do my
seizures feel like other people's seizures? How can I explain what
this feels like?
We asked these questions of our subscribers. What follows are their
answers:
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"Sometimes I see blurry, like I'm under water and then I don't see
anything" "I can hear you a little bit, Mom." "I forget what I'm
doing or where I am too!"
- Declan (Connecticut)
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"When my son had "big seizures" as we called them. He said it was
"dark." Otherwise, I would say "PAINFUL." Chase has (used to have
before the K-diet) drop attacks. He would have 30-100 of these a
day. His day would start with his face falling into his bowl of
cereal, or dropping into the toilet while going to the restroom, or
his face would plant into his bike handles. He mostly sat on the
couch (his safe zone) during that time.
Fortunately, the diet is working and he is back to his old self and
SEIZURE FREE!!! God has worked a miracle in his life!"
- Cheryl
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"Having a seizure is kind of just like being off somewhere else
because you can't feel anything and you don't know it's happening
until you wake up. When I wake up after having a seizure I feel kind
of confused and don't know what's going on but after a minute I look
at my mom or dad and just say "seizure?" and they say yes. When I
wake up I have a really bad headache from my brain freaking out. I
always dream when I have a seizure and it's always the same and I've
tried to explain it to my mother but I can't I think it's because my
brain was still recovering from the seizure but I'm not quite sure.
But overall a seizure is just like being in another place for
awhile."
- Briana
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"My name is Robin I am 55 yrs old and I also have epilepsy.
What does a seizure feel like? Mine feel like The Day the Earth
Stood Still. I feel like I am lost in space. When I wake I feel like
I took a trip in a time machine. This is how out of it I become. I
feel very tired, all I want to do is to sleep. I don't feel like
eating I become nausea. I also get very bad headaches.
I don't have the energy like I did before I would have a seizure. It
takes me a few days to begin to feel like myself again."
- Robin
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"It feels like you can't move, but you are awake."
-Nevin (age 6 1/2, ideopathic epilepsy, 5 seizure types,
seizure-free and med free on the ketogenic diet.)
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"I have twin girls that both have no seizure control. Addleigh has
drop seizures and always blacking her eyes and hitting her head,
they hurt really bad. Kennedi has 30 seizures a day..and she never
really gets over all the seizures before another one happens."
- Brittany
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"I like to think of seizures as two or three different parts.
They’re similar to how I would classify the different parts of my
sleep. The first part I can only really describe as being asleep. It
is a period of time where I personally am not aware of anything. I
might be walking, or even as has happened occasionally, talking
slurred, but I won’t be experiencing that in any way. Do you
remember actually talking, if you talk in your sleep? Or how about,
do you remember walking if you sleep walk? Likewise, I have no
recollection whatsoever in that ‘stage’ of my seizure.
"The next stage only occasionally happens. Just when you sleep,
occasionally, I dream. In fact, I have had nightmares before! The
most reoccurring one I remember because I popped out of my seizure
faster than normal from sheer fright. Did you know that you only
remember the dreams that you have right before you wake up? Once
again, it is the same in my seizures.
"In these nightmares, (I’d have them as I was trying to fall
asleep.) - and I know this will sound silly, and I thought it silly
that I was so scared once I popped out, but I believed completely in
it during my seizure just as a dream – anyway, a big, brown, hairy
monster with a big purple (darker) nose would be chasing me, or
other people. Often, he would eat other people. He had a mouth full
of sharp teeth that would only be revealed when he opened his mouth.
I think he had black eyes, the size, I’m not positive - if he had
any. Quiet a lot, it would end with the black sea of his mouth
enveloping my vision. Besides that, I remember one other nightmare.
I was looking up a light, the kind in a class room – big,
rectangular, in the ceiling, quite often with florescent light bulbs
I believe. Anyway, I went into a seizure, and since I don’t remember
the first stage at all, all that I experienced went right to the
‘dream’ part. Just like when you fall asleep, you seem to jump right
from trying to the dream right before you wake up. So, as I was
staring at this light, (Landon, my little brother was next to me,)
it started to fall on us. I love Landon, and I was so scared for him
that I popped out.
"Besides those nightmares, I remember, for sure having a ‘dream’,
but the moment I pop out, it is slipping away from my memory. It is
in this second stage that occasionally, I’ll have a unique seizure.
I’ll remember something in it, or relieve something I didn’t that I
don’t actually remember doing. Something along those lines that
don’t make it just another seizure.
"And finally, the last stage. I am ‘waking up’. Do you ever feel
groggy in the morning, or even in the middle of the night if
something randomly woke you? Half the time you’re are wide awake in
a second. The other half, you have to take a moment to figure out
just what was happening a moment ago, and what in the world you’re
doing here! It’s the same with my seizures. Sometimes, I’m
immediately awake and into the moment, or (especially if I walked
through my seizure or had a dream,) it takes a bit to realize that
the dream wasn’t real, and I’m not sleeping.
"The second this stage starts, I often feel the urge to apologize,
and sometimes I say “Sorry!” or “Seizure.” Before I know what’s
happening. Now tell me, would you prefer to wake up in the morning
on your own time, or someone scratching your back or holding your
hand instead of clapping in your face or shaking you? Me too. I
can’t stand it when people try to ‘wake me up’ before I’m ready. But
a hand in mine or on my shoulder to steady me comforts me
incredibly.
"Now the question is, if I’m not aware of my seizure, how do I know
that I just had one? Well, picture you were just in a bad accident
and you wake up in the hospital, and you can’t remember a thing. How
do you know that you can’t remember? Well, you’re not a newborn baby
with years space of memory completely empty. No, you’ve done things,
you know things… but what? My point is, I can tell that I missed
something. I period of time is missing from my memory. Not my entire
life, but a minute or so each time. And that, is what my seizures
feel like."
Brooklyn - Colorado, USA (Brooklyn is the inspiration and co-creator
of this website with her father, Michael. You can read more about
our story here).
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"In my seizures, I twitch a lot at first and then I start screaming.
While I'm screaming I try to say "Daddy" even though he's right next
to me. To me, the worst part is I can't control my screaming. It's
almost like it's involuntary. Like breathing or my heart beating. I
always feel like I have to say "I'm sorry" for screaming after I
have a seizure."
- Hannah, in Sarasota, FL
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"My son is Dalton. He is now 8 years old and was having seizures
from 17 months old. He was having the seizures that affect his
language and learning skills. Our Doctor who we only met two years
ago is the most brilliant compassionate man one could ever have as a
Doctor. He took our child from having 30 seizures a day to seizure
free. Dalton had brain surgery 3 months ago at Sutter Memorial
Hospital in Sacramento and between Dr Michael Chez and Dr
Cirrocello, Dalton under went a very tough surgery that lasted about
3 hours. They removed part of his right frontal lobe and as of today
he is starting his life all over again seizure free and learning to
talk and read and doing amazingly well thanks to these two very
special doctors. Other doctors had written him off and said it is
what it is and my husband and I were not willing to accept that.
When Dalton had a seizure it made him very distant and looses his
train of thought for several hours. He would also wet himself and
just be miserable. We feel so blessed to have our child have a
second chance at life."
- Michele
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"My seizures always take place when I am sleeping; I've never had
one from full consciousness. From what I understand, I usually
"doze" off pretty quick, and go right into a seizure. I don't
remember what happens, but I know when I wake up, I feel very
uneasy, out of sorts, and I don't even know where I am. My wife says
that I don't even know who people are. I am usually combative too.
It takes me quite a while to calm down and talk to everyone. I'm
active duty Army, and when I was deployed to the Gulf a couple of
years ago, I had a Grand Mal Seizure, and I ended up while I was
asleep in my "rack". After it had finished, I got up, and walked
around the compound in my underwear, not knowing where I was, nor
did I have a clue what was going on. My feet were bloody, and
someone had to take me to the medical station. I was very
embarrassed when it happened. So, to make this a short message, I
don't really feel a whole lot, as I really feel like I'm sleeping,
and when I come out of it, I feel like someone is waking me up, when
I don't want to be awakened. It's one of those moments, when you may
feel grumpy, as if you didn't get enough sleep."
- Jeffrey
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"My seizures are complex partial seizures that happen while I'm
sleeping. I wake up as I am jumping out of the bed, all of the
blankets flying onto the floor. I stand in the middle of the room
sure that something is terribly wrong, maybe I'm dying, maybe I'm
having a heart attack, something is WRONG -- but I don't know what
it is. If someone is in the room with me I will try to talk to them,
but be unable to speak. It's like there is nothing in my head in the
moment I want to say something, or like my mouth is paralyzed. It
feels like there are spikes, where I can think for a split second
but then I can't, so I try to communicate in the intervals between
spikes. I am terrified afterwards, sometimes shaking with
adrenaline, and then I realize that I have had a seizure. They last
about 30 seconds. "
- Beth
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"I'm doing whatever I'm doing ---getting ready for work, watching
TV, etc. Then I lose consciousness with no warning whatsoever. Some
people experience auras, but I never have. The lack of consciousness
lasts a little while. Then I come out of the seizure. I may be a
little bit groggy at first. Curiously enough, I don't usually know
I've had a seizure unless someone informs me of the fact. There is
one exception to this, but I won't go into it right now. Two more
things, not really answers to your question, but worth noting: I do
not have reason to believe I am photosensitive (not all epileptics
are), and my last seizure was in 2006."
- Allen
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"My son does not remember anything about the seizure. Sometimes it
is preceded by the yawn. Sometimes he remembers the yawn and
sometimes not."
- Julia
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"My son, 10, says a seizure feels like he misses out on something,
then he wakes up and realizes he just had a seizure, and he feels
bad and grumpy."
- Lisa
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"I'm not exactly sure what my daughter goes through when she has a
seizures because she is now nonverbal and very limiting ability to
tell me what is happening to her.
"I know that is sometimes painful for her-that her body aches. When
she comes to I see the groggy look in her eye that says... help me.
I know she has headaches and she is scared because the few words
that she has she does when she is having seizures which is "all
done". It is very painful as a parent to watch your child have this
condition and not be able to do much about it. When she says those
words it breaks my heart and I do so much of my spare time
researching new ideas, diets, drugs etc to somehow give her some
relief.
"Meghan would describe her seizures like this " I get scared when I
have a seizure and when I fall down sometimes I get really hurt. I
don't know how I got there and why I am bleeding. My mom is
comforting to me and she is ALWAYS with me when I have them. When my
seizures don't stop I have to go to the hospital. I am very used to
this and my mom always tells the staff I will be there best patient.
I am very proud how I handle this but I wish we could find a way for
them to stop. When I have many seizures I have a hard time standing
still and my left side gets very weak. I My head hurts sometimes and
my body aches like I've run a marathon. I just tell my mom over and
over all done all done and wishing they would stop!"
- Meghan, Hartland, Wisconsin
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"I get a form of omen , before having a Seizure. That makes me
feel nauseas, and everything seems unreal . Sometimes my over lip
start to feel numb.
During the Seizures, I sometimes feel left out, or as if I´m not
there. I hear the surroundings, but are unable to react.
When I pop out of it, I´m tired, maybe dissolved in tears, and can´t
always remember or understand the fuss around me...sometimes [I]
have the ... feeling...like I have to say "I´m sorry"...when my
Seizure ends."
-Eva-Christina Jørgensen, Denmark
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"My name is Barry and my daughter has about 10 / 15 seizures a day.
She begins with saying "Why do birds suddenly appear? Where have you
been dad? are you going away? Dad, where have you been, I'm having
dreams about this, Where have you been? Have I done this before?
When she comes out of it she always says "Dad, I'm sorry" and is
exhausted. She asks if she looked funny. During the seizure, I tell
her to breath slow and deep and they last between 2/3 minutes.
She is also bipolar and mood swings with emotions seem to bring them
on.
She is still seeing the Dr. to get her Meds to do a better job but
trial and error takes a long time."
- Barry (Chatsworth)
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"I don't remember anything for a while before and after the seizure.
When I become conscious i see myself lay on a bed and people looking
worried.
I feel I don't have any energy at all to even sit up, I feel so
dizzy and dont remember anything I start asking what has happened
and where was I, where when and who observed it.
I feel sick, I feel like sleeping afterward to get some energy back
. I have a bad taste in my mouth. I usually feel pain somewhere on
my body due to falling down on something or just the ground."
- G. from Perth
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"I have had seizures for ten years. In my opinion having Grand-mal
seizures is mostly comprised of what you remember and feel before,
what you remember and feel after, and what other people recall as
having happened. For me it begins when I first experience what most
Dr.'s refer to as a aura ( a warning sensation or distinctive
feeling ). While working as a Unit Secretary at the local hospital I
was sitting at the nurses station desk when I started to feel
different. All of a sudden I couldn't remember exactly what I had
been doing or exactly what I had been thinking. I couldn't really
think clearly. It was as if I had started to slow down or shut down
both mentally and physical. Within the next few seconds both of my
arms jerked so forcefully that I couldn't even keep a hold on the
pen that was in my hand. At this point I knew something was very
wrong and as my heart started to race and panic set in I stood up to
get help. That was the only thing I remember before waking up in the
emergency room several minutes later. The first thing I noticed
aside from the fact that my whole body ached was that a woman who
seemed familiar to me was standing by my bed, but for the life of me
I couldn't remember her name. When she asked if I knew who she was
or if I could remember my own name I tried to say no but I just
couldn't form the word so I shook my head. She then asked if my name
was crystal, and I knew that it was so I shook my head yes. Then she
told me what had happened. Slowly my memory returned and I could
remember the names of people I worked with, family members, and
other personal information. Within thirty to forty-five minutes I
was able to speak clearly if not a little awkwardly because I had
bitten the insides of my cheeks and the edges of my tongue. Not only
did I become more mentally aware but I also became more physically
aware of my injuries. After standing up, according to the
recollection of my coworkers, I turned around took a few steps away
from the desk then fell backwards hitting the back of my head on the
edge of the desk. Then I began to have a Grand-mal seizure. I'm
kinda glad that I don't remember the whole episode as it seems I am
always standing up and always falling usually hitting something very
hard whether it be the ground or an object. I also consider myself
lucky because I do have these warning sensations and they have
helped me over the years to be able to detect these seizures before
they actually occur. As some have also stated I too often experience
the need to apologize to those around me for having a seizure almost
as if I could have in some way controlled it, but I know I
couldn't."
- Crystal, Clio, SC, Age 29
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"My daughter has no warning that it is coming. After she comes out
of the seizure she is confused and said it reminds her of Star Trek,
where she is in one place prior to the seizure and transported
another place, usually with me or her dad by her side. She also can
not believe that she has had one when she comes to until she
realizes one minute she was in a chair at home and the next she is
on the floor at home. She is in a state of "why me?". To which no
one can answer."
- Noreen
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