What Does a Seizure Feel Like?
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:
“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)
“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!”
“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.”
“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.”
“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.)
“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.”
“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).
“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
“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.”
“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.”
“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. ”
“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.”
“My son does not remember anything about the seizure. Sometimes it is preceded by the yawn. Sometimes he remembers the yawn and sometimes not.”
“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.”
“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
“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
“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)
“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
“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
“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.”
“What Does a Seizure Feel Like?”