How I Explain What A Seizure Feels Like
Sure there’s “getting used to” seizures after having the condition for so long, but there really is no getting buddy-buddy with them I’m sure we can all agree to that. It’s not fun. It’s unsettling. It’s uncomfortable. We don’t want it in our lives. We want it gone. Forever.
Having seizures is a major inconvenience to our lives. It can prevent us from working jobs, taking care of our family, doing the things that we love to do with family and friends, and can even affect our health at times. Consistent seizure activity can lead to physical injuries, brain damages for some, depression, anxiety, stress, and major medical costs.
As we take this journey, we at times hit bumps in the road. These bumps in the road are unfortunately unavoidable for the moment but they can however make us stronger if we allow them to. We can do our very best to steer around them and make the bumps not as hard of an impact by:
- Taking note of our seizure triggers
- Eating right
- Getting good sleep
- Taking epilepsy medications on time
- Avoiding drugs and alcohol
It is so good to know as well, that we can take comfort in the fact that not a single one of us are alone along this journey. No matter how you’re feeling, there are many men, women and children on the exact same journey on a mission for a cure and we will not stop until a cure is found.
I’m going to describe what a seizure feels like from my point of view and from there include an illustration to go along with it. A persons seizure experience is unique to the individual. These are my experiences. I encourage you to describe your experiences following this article!
“A seizure is like being caught up in a tornado.”
“A seizure feels like being dragged deep under water.”
“I feel like I can’t catch my breath.”
“For me, a seizure feels like electricity stuns and weakens every nerve ending in my body.”
“It feels as though black ink is bleeding inward from every which way, causing my vision to slowly fade out.”
“My verbal communication is a pile of babbling gravel.”
“It feels like one long and crazy bad dream. Yet, it’s always real.”
What does your seizure experience feel like? Share your experience in the comments section below!
Tiffany Kairos
I am a happily-ever-after wife, an epilepsy diagnosee, advocate for epilepsy awareness (The Epilepsy Network), life lover & Christ inspired! Life is a journey and I'm loving every moment of it. Even the bumps in the road!
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121 Comments
Jerry Bryan
Mine feel like I’m in my own little world. I can hear people but cannot talk. It’s no fun spending time alone in my own world, so confused and feeling lost, pounding in your head, ears ringing and so much more that you could write a book. #epilepsyawareness
Amy
I feel like I have a chill that’s trying to shoot up my body and I can’t get it and then all of a sudden I feel paralyzed and everything sounds so far away. Then I come to and I don’t remember anything or how my pants got wet. Just nothing
Denise
I have two kinds, tonic clonic, very short prodromal. Then I lose consciousness and wake incontinent with urine and a sore bitten tongue. The more complex is my complex partial seizures. Starts with a funny epigastric sensation, rises into my chest. In my brain I can think but it is too much effort to verbalize and sometimes I say the wrong things (like call my dad by his given name instead of dad). The feeling builds and builds (with strong feeling of deja vu), then a sudden release when I break out in a sweat and the feelings subside. I have read this is a classical presentation of complex partial seizures.
Crys
I had a very violent seizure a yr and a half ago. In 30 years of epilepsy never had one so hard. Since then i have had 3 grand mal(before this only had one every 3 or 4 years). Sometimes i cannot see straight everything is almost jagged feeling. I can be walking and visually can see “zig zags” and slight jerking and jumbled speech for a couple seconds but at the same time be carrying on a coversation. Other days feels like the room is spinning even when im sitting down. Today i was out doing errands walking everywhere and very very stressed and broke down in tears twice when i was at two meetings and the last couple hours(i was like this for about 6 hours) i have finally started to really calm down but now everything seems like a dream..with gaps like i know it was all real but like its not real. I had what i believe was an aura once because usually i would have no warning but i was making dinner and suddenly felt really nauseous and major amount of fear or impending doom but produced no seizure but every time i tried to move a major amount of dizziness and blurred vision came over me. Since that major seizure happened unfortunately no dr has been able to tell me about all these new symptoms i have had since then. If anyone knows a good place to speak with someone and get answers thst would be great also.
Vicki
It’s really hard to describe what a seizure feels like but I’ll do my best! I’ve only ever had grand mal/tonic clonic seizures when I’m asleep but the majority of the time I will wake up just before I go into one. It feels like I am spinning around in circles on my bed and everything feels really heavy along with a strange sense of deja vu, if I concentrate hard enough and force myself to stay still or go rigid on purpose then I can ‘pull’ myself out of it which is good but I find that when I do actually have one the hardest part is when I wake up almost immediately afterwards. Most of the time I will get out of bed, everything is foggy and my body is super sensitive so when I’m reaching out for something or touching a wall its a slippery, tingling feeling and it makes me feel sick. I feel scared, alone, very disorientated and will wander around the house touching things and calling out for my mum even though I know I’m not actually saying the words and she is not there, it’s all just very wobbly! It’s also difficult to go back to sleep cause you are frightened it will happen again then in the morning you have a splitting headache and every muscle in your body hurts, you feel extremely weak and all you want to do is sleep which obviously affects your working life. Most of the time I am able to just get on with the day and make it work, I’m lucky in that regard as my epilepsy doesn’t prevent me from doing anything. When I was diagnosed the first thing I said to the doctors was ‘oh thank f**k’ and they looked at me like I was crazy asking if I understood what they had just said to which I replied ‘yeah now I know whats been causing this weird s**t to happen and you can fix this’ we all then had a laugh. I won’t deny that this is scary cause it really is, it’s a horrible, sick, disgusting feeling and it’s more difficult when you can’t explain it to people who don’t have it cause they just don’t understand. I just tell them it feels yucky and leave it at that 🙂
Michele
My seizures start with the aura. I feel brain zaps, nausea and tunnel vision. Then I experience deja vu moment where I hear my mother talking in my head. Then I feel panic set in and that pushes into a seizure which leaves me unconscious and on the ground. When I come to, I am disoriented and confused, my memory is gone. I feel shaky, weak and headachy and sometimes have woken up with a nasty bite on my tongue or a bloody nose and mouth. Horrible experience!
jade
For me an aura can start a few seconds before a tonic clonic, a few days before or on it’s own. I have an awful collywobble/butterflies in the stomach feeling like continuously falling with a unbearable feeling of dread. I get confused like everything is a second or two off. Almost if like you are watching a movie and the audio doesn’t match up. It takes much more effort to move or think and often I can only focus on one repeating thought or idea. Most of the time my left hand and foot will begin to draw up, my hand and fingers going towards the inside of my wrist, my arm going up like it’s in a sling, and my foot turns on the side and i drag it. When the seizure actually starts I can feel myself kind of shrinking into my body like opposite out of body experience and I’m trapped in this shell that does whatever it wants. When I come too I usually have a splitting headache, I can’t really move and I try to talk but what I’m meaning to say comes out all garbled. It’s very frustrating because I think I’m saying one thing but it’s just gibberish. Once I can move in need help getting up and walking and moving takes a huge effort. I will be holding something and I’ll crush it or my hand is just floppy. I hate seizures so much. I hate feeling helpless, I hate needing help, I hate people looking at me and treating me like a grenade with a loose pin. I’m very independent and never want anyone to do anything for me, but without being able to drive, or work, or even be left alone for more than a few minutes or drives me crazy. I feel like this huge burden on everyone I love and I hate having to tell my husband I don’t feel well, because it is admitting that is going to happen and I feel like it’s a huge inconvenience. Anything anyone had planned or wanted to do is nullified do to me. It is very easy to get depressed and feel worthless. It is something I deal with every day.
Ryan Gould
I have epilepsy too Tonic Clonic Epilepsy, Honestly. If i could explain i would. I’ll do my best to though. Basically before i was diagnosed with it, I had these twitches & Jumps(If to say) I could be face to face talking to you. I’ll ‘jump’ Then kind of forget i was talking to you.. The twitches although. They started it all, I spoke to my doctor and said “I keep twitching, For example smoking a cig, I’ll twitch and drop it, Although my brain wouldnt know, It’s hard to explain my seizures in a way i could actually tell you. But Everyone who has saved me and woke me up from one has the same explanation… I’d just drop(Unknown to anything till i awake from it) Id have my episode But i always seem to wake up extremely tired, Also i tend to chew my tongue and lip, I would also feel week, Very week But mainly just need sleep. I truely understand how you all feel and i respect all your comments. Hope you get better one day
Angel
This post is over a year old but I’m so glad I found it. I’m 35, wife and mother and epileptic. My seizures feel scary, being in my temporal lobe they trigger anxiety and agitation hours before the seizures strike. They take my control away which terrifies me. I become helpless my speech paralyzed, sounds instead of words. I tell myself stay calm I’ve learned not to try and gasp for breath it only makes the lack of air lack of control worse. Epilepsy is a living nightmare for so many. Somehow all of your stories make me feel less alone, less abnormal, more informed. Not allowing ourselves to become isolated and introverted these are the two most important things and the hardest for me. My prayers and love to all of you fighting back against your seizure disorders. May you have peace in the midst of your journey and the strength to carry on. XOXO
Lonewalker
Many thanks for your responses. Do you actually stay conscious and feel it all then? My son said the last one he had felt like everything inside was jerking and colliding but doesn’t know if it was happening on the outside and was aware of something going on what felt like a long way off but couldn’t respond? Thank you so much – I will look on the Facebook page too…
Tiffany Kairos
Hi Lonewalker –
I don’t always stay conscious. Sometimes I have Grand Mal Seizures, sometimes I have Complex Partial Seizures. Has your son had testing by his neurologist to determine what kind of seizures he is having? You’re very welcome! 🙂
All the best to you,
Tiffany
Heuro
It would be so good if you can tell the world in your own voice what it feels like to have a seizure
https://sonic.ai
People don’t understand epilepsy, and first step to overcome it is to explain it better
Jeff
Mine start with a pins and needles type feeling mixed with being very uncoordinated on my left arm. Then it turns into a light shocking feeling in my hands. As it progresses , the shock goes up my arms and gets way stronger. I’m eventually on the floor getting shocked all over.like I stuck my finger in a light socket. My arms, legs, and back are stiff as a board. I wake up a few minutes later feeling like I just ran a few hundred miles. Also I’m not much use at anything for a few days.
Mike
I have had seizures for the last 40 years (now 42) and I am tired of holding back and hiding my feelings about it. Am I aloud to curse on this page? I am f-cking tired of the seizures, auros, medications, doctors, bloodwork, eegs etc. I know that I am lucky because it could be worst.
I am a teacher (preschool disabled) and I have had to ask for a ride home after having a myoclonic seizure. The last thing I want is for my daughter or my students to see me having a seizure. Sorry, for they typos but I am crying as I write this.
Tiffany Kairos
Hi Mike –
You should never have to hold back nor hide your feelings about living with epilepsy. I would always encourage you to be open and honest about how you feel. 🙂 Regarding cursing, of course I would ask that you do your best to keep cursing to a minimum as there are people of all ages that read and post to this blog. I thank you for blocking the word that you used. I do understand so very much how you feel however! I myself have not driven since becoming diagnosed with epilepsy. I by my own choice gave up driving. I still hold a drivers license, however I do not feel that it would be safe for me or others if I were to be behind the wheel. I miss taking myself to and from places, however I have adjusted over time and have learned to love other means of transportation. 🙂 I can understand not wanting family or others to see you having a seizure. However, should they see you have a seizure, it is okay because it is an opportunity for them to learn more about seizures and epilepsy. To become adjusted and overcome the fear of seizures. Seizures can happen to anyone, at any time and it is something that we must make the public more aware about. If we don’t, the stigma will continue for years and years. We should not allow this to continue on. In order to make things better for all of us living with epilepsy and to further progress, we have to raise our voices. 🙂 Rise above epilepsy. I pray the very best for you Mike! God bless!
Taylor
I’m so glad I found this post! I recently had my first seizure and tried to explain the feeling to one of the ER docs. He proceeded to tell me that when you have a true seizure you don’t remember what it felt like. He made me feel like I was crazy and basically told me there was no way I had a seizure because I remembered the feeling.
Tiffany Kairos
Hi Taylor 🙂 I’m sorry to hear that you’ve had a seizure! I pray that you feel better very soon as I know that seizures can take a lot out of you. Sometimes you don’t remember what it felt like, however sometimes you do remember what it felt like. It all depends. Seizures are unpredictable. I wish you all the very best in your journey! God bless! 🙂
mandy wright
Hi there i have had epilepsy since i was 11yrs i can´t describe what it feels like when having one as i have something called nocturnal ones they are the ones that you have when you are sleeping. I know when i have had one because my mouth is all warm inside my bones ache, my head is all full of stuff and feels like it´s going to explode. I sleep all day too my husband say´s i foam at the mouth and my eye´s open and i stare into space i can´t remember some things from that day or when woken straight away seeing who is who is strange. When i was 11 i used to have full 20mins seizures which is quite dangerous for that age. But now i haven´t had any for a while which is good. I have 2 children which scared my daughter when she saw me have a seizure for the first time. I have Grand Mal seizure´s. I have never let my Epilepsy stop me from doing anything i have achieved all my goals and more which is good it´s been a struggle but it´s worth it in the end i am 40 now and enjoying every min of life xxx <3
Melissa
Well have 2 types of seizures. The convulsive where I thrash around and go unconscious. Thoes are treated and under control. I also have been recently diagnosed with non convulsive seizures. I am completely conscious and aware of these seizures. But sometimes I just can’t speak. I also get loss of hearing at times. Only while seizures happen. I am on meds and the convulsive seizures are controlled as for the non convulsive seizures they are almost stopped by meds. I reckon another meds adjustment may stop it completely well you know what I mean. Controlled
Laura
I’ve just been diagnosed with epilepsy I don’t get any warning signs I can be doing something totally normal I then have a tonic clonic seizure when I wake up its like being in a dream people’s voices sound as if they are echoing I then get very confused I don’t know where I am feel sick and just want too sleep and my legs feel like jelly I struggle to talk aswell and feel like my brain won’t function too make a sentence for me a seizure feels like I’m trapped in a bad dream
Tiffany Tate
Wow, great description. All of your posts – ones with or spouses of are amazing to read. I am very recently diagnosed and only having a handful I wasn’t sure how to explain what I felt or what was happening. I just knew something wasn’t right and it was the same exact something each time. After 2 episodes of waking up in an ER, with the chewed up tounge and body feeling like I was ran over by a bus; I couldn’t tell what was worse the before or after……regardless after reading these post it brings me a little peace that I’m not alone and this new normal will be ok. Thanks for sharing. I wish everyone well.
Mrs Alison Wilson
I feel ill for a week after a grand mal seizure. I am pale and wan looking, with migraines. It doesn’t happen often, but when it does I suffer!
Bethan
i hate when I have a fit, people who don’t have this don’t understand but I don’t know who I am when I wake up or who anyone is, I had a fit a few months ago and didn’t know my boyfriend of 8 years I was scared and in a house I didn’t know, when I have had one my body feels like it has broke and every movement hurts even blinking hurts, I got told I had this when I was 18 and had to change all my life goals to suit this, I am now 27 and still hate the fact I have to take medication for the rest of my life, it’s nice when you know other people who have this has you don’t feel so alone, as many times I have done in the past. The only thing about epilepsy has made me see is how precious life is. And that at times it does became a little easier but when it does get easier for me I normally have fit then feel right on edge again thinking when is the next time I am going to have one, and hoping it is not whilst am out or near stairs or cooking this takes a lot of getting used to and I don’t think people who have never had epilepsy realise this. Sorry for my rant it is the first time I have came across a site like this and I don’t feel so alone.
Gemma lamoratta
I have photosensitive epilepsy and I’ve battled with it since I was 12 years old. It took my life away and stopped me from achieving my goals. Couldn’t drive or do the job I wanted. It’s taken my memory + even my ability to speak or access words at times + frightened the life out of my husband and children. But now I’m taking my life back at 32 years of age. I’m currently learning to drive to get my ideal job and have been fit free for almost 2 years. I can’t cope with nightclubs or the sun behind the trews but I look after myself, eat well and sleep as much as possible. I try to not let stress get to me and remain optimistic. Keep fighting and never give up!!!!! ☆
Matthew
Going into a seizure I would firstly get a strange metallic taste in my mouth followed by a strong sense of deja vu which can be described like watching a film for the second time. Everything around me seems unreal or fake as if I was in a dream. Then the world feels like it is incredibly large and I am incredibly small. After that I have no memory of what happens next, usually I will find that I have wandered somewhere. Coming out of it I am extremely exhausted and very confused. I also loose my linguistic skills and English just seems like a foreign language to me.
Bethan
I also have this to Matthew its horrid xxxx
Karla Richards
Seems a lot like my experiences. I don’t have the metallic taste but have sneezing at the onset.
Chris
I always tell people that it “feels like I am on a rocket ship to Mars. I’m not sure if it is going to make it there or if it will blowup at some point, but I always know there is going to be a problem with it at some point soon. However, it always feels like I’m on Mars after one. I can’t figure out where I am, who I am, or who anyone else is…everything is an alien to me. And I know I’m never going to make it back to earth because I just wait for the next problem to happen with the space ship.”
Charlotte
Epilepsy is a burden. Seizures started when I was 17, 21 years ago. Feels like my brain is dunked in sherbert, then I’m sinking in black sea. Grand mal seizures have no warning and if I’m out and about then will wake in hospital. One morning I woke under a lorry, was riding bike to work, had a seizure, lucky the lorry was parked up and not moving.
Rylan Kellum
My seizures feel like I’m stuck between two rocks and all I can do is just struggle to get out and I can’t. It also makes me lose all control over my thoughts. So I picture really creepy things while having a seizure. They are just painful and I wish everyone could have the chance of experiencing what a seizure it’s like. Whether it be Epileptic or just absent, that way the people who do have seizures aren’t made fun of for having them.
Amanda Lupacchino
There are two ways I describe the grand mal seizures that any epileptic has. The first one is very simple: falling asleep. Think about staying up very late and suddenly you find yourself waking up somewhere else. The only difference is you have a sore tongue, you get dizzy, and you have a very difficult time remembering what happened before waking up.
The second way I describe grand mal seizures is a little more complex. Think of your brain as a computer. The brain of an epileptic is a computer with a virus or anything of that nature. What do computer users do when they discover an error? They restart it. The brain is doing the same thing in a way. It found something wrong. So it is refreshing itself.
Those are the two ways I describe seizures. But I wouldn’t necessarily say epilepsy keeps me from living life. I still work part time, hang out with friends and family, and much more. Because I don’t allow a simple diagnosis to define who I am.
Natalie
Wow i can relate to everything you have just mentioned to what your seizures feel like. Ive never been able to explain what they feel like until i just read yours and that is exactly how i feel xx
Matt Conneally
Epilepsy to me feels like a broken record… one part of the song is constantly repeating itself over and over again!!
Tara S
i have photosensitive epilepsy..but it is manageable as long as i stick to a strict regimen of the following;
-lots of sleep(8-10)
-eat well
-little to no alcohol
-take my meds on time
-minimize stress
If i do have a seizure its bc i havent followed the above and/or stress is too much.
The best way to describe my seizures, is kinda like turning off a light switch and everything goes dark…i cant see, hear,feel anything until i come out of it and then im seriously confused and its like a Mac Truck has hit me. I am exhausted, sore and sleep for days.
Jessica
My heads up is “hiccups”, which is actually apparently one type of seizure. It’s like I can’t get out more than a word at a time without a hitch. It’s really frustrating and I have a hard time thinking. Then I just go blank as I go into a tonic-clonic seizure. When I wake up I’m totally out of it and can’t answer questions, even the most basic ones. It usually takes about an hour before I’m fully in focus, but I’m exhausted for at least 24 hours after the seizure.
Romy
Mine feel like I get out of my body and I see everything from the outside.
Rachelle
When a seizure happens to me, I can explain it starting out as a seriously uncomfortable moment….I start hot flashing, having racing thoughts and I normally get the one thought no one wants to think, “is this going to be the end?”
Once those thoughts come into play and a seizure is going to happen…they just do. Depending on the type of seizure I’m going to endure, if it’s a peti mal seizure, things go black at a slower but fast enough rate that I have no control. Then I wake up with a bunch of people staring down at me wondering what the hell they had just seen. If it’s an absent seizure, I usually just black out…slowly coming together with people looking at me and talking to me trying to figure out how far gone I really am.
At the end of every seizure, I can say that I am truly exhausted. Having that much nerve power take over the body for any amount of time really does take a toll.
Anonymous
Thank you so much for this post! I personally do not suffer from seizures, but I have close friends that do. One has a small “moment” daily where she forgets where she is, who shes is with, and what she is doing. They last about 5 minutes or so. Both of my friends have occasional grand mal seizures, which can be scary if you do not know what to do.
I encourage you all to tell those you spend a lot of time with what to do or expect in case you have a seizure, whether it be a “moment” or a grand mal. It took some pursuading to get one of my friends to talk to me about it, but I have been with her almost every time she has had a grand mal in the past couple of years, and knowing what to do to help ease her stress, calm her down, or alleviate the effects of the seizure help me worry less about her well-being and safety.
William
i have both simple partials seizures and gran mal. I explain the simple partial like this. Imagine if you were about to get on a roller coaster. Even better, imagine two groups of people that ride a roller coaster. Group one loves to ride roller coasters, they can’t wait to hit turn nine and six, and once the right is over there back in line to ride again. Group 2 tries her for the first time, and realizes just as the roller coaster begins to move that they’re in for the worst experience of their lives. By the time they’re off of the roller coaster they had for the bathroom and are sick for the rest of the day. Every emotion that they felt was the worst terrifying emotion in the world. They are in no hurry to go on any other ride that day, or any roller coasters for the rest of their lives. Group one on the other hand, looks forward to the next day they get to ride that roller coaster, as well as any other ones that they have not yet tried.
For me, simple partial epilepsy is the roller coaster that turns all of my motions upside down, and is the worst feeling that I ever feel. I can truly say that I suffer with this. And while grand mall seizures are horrific as well they are less emotionally draining for me. I rather not have either one.
What makes simple partials so bad for me, is the feelings as well as the things I hear and see. Can anyone else attest to this?
Michele
I can feel them coming on recently. I get a “funny feeling” that’s hard to describe. Then all of a sudden I feel like I’m falling backwards into a canyon of darkness. I even try to talk my way out of them “Please no, don’t. I don’t need this, please no, go away, go away….” My husband said I start w/a blank stare and then I’m completely zoned out but still talking, only by now it’s gibberish. Last week he had to call 911 bc I couldn’t reorient myself, he said I was in & out. To have your EMT hubby call 911 for his RN wife bc he is scared scares me. By the time medics arrived, I was so out of it, i didn’t realize there were 6 medics in my living room trying to talk to me.
They started 7/23/2009 w/one whopping Grand Mal that left me so worn out it took about 4 days to fully recover. No auras, no previous history and still as of last week 5/2015, negative CT scans.
I’m so scared that next one will be my last, and I have 2 special needs children (10 yo son son is Autistic & 8 yo dtr w/various deficits) who have witnessed EVERY SINGLE ONE. They only know “Mommy doesn’t feel well and had a seizure.”
Katiesmomma
thank you all for sharing what you feel with seizures. My 14yr old daughter is nonverbal and has had seizures from 3months on. On a “good” day she has 75-150. We won’t even discuss a “bad” day. It breaks my heart to see her fight through each day and brings me joy when she is able to do something new. Does anyone else have extreme photo sensitivity? Sunlight will set off seizures faster than heat. Heat is bad but light is soooooooo much worse.
Patricia Ann Kuhn
I can give you observations from a spouses point of view. My husband Nathaniel’s seizures are a result of Agent Orange exposure in Vietnam. I can usually tell when a one is about to occur. We are in the moving car and he stops talking. I look over at him and he’s into it. They usually last about 30 seconds to a minute on average. He usted to drive (he voluntarily gave up his license in 2000) and he’s had numerous serious accidents before that time, but praise the Lord, he’s never injured himself or anyone else. Just totaled several vehicles. I always ask him after he’s completely come back “any warning”? Sometimes, sometimes not The only kinda scary ones are the unexpected. He’s had several of those over time in Macy’s (by himself), Wal Mart (i’m present). In Wal Mart he’s pushing the cart while i’m shopping and the next thing I know I hear a thud. He’s prostrate one the floor writhing. Happened at the register. We’re waiting/talking next he’s down and briefly out. Store personnel/managers come running . “Do we need 911. I tell them no. By the time slow 911 arrives he’s ok enough to carry on. They just wanna make sure we’re NOT gonna sue them. LOL. Happened in Pizza Hut. Similar scenario. The only other “strange” once in awhile occurances are driving along, seizure occurs. In middle of same he attempts to open door to go who knows where, or seizure occurs I pull over again in middle of same he opens door and proceeds to urinate. Never mind folks could pass by and see him doing his business. Never a DULL moment during seizures. We have a nickname for them: numbers. That way we don’t freak folks out talking about them, etc.
Laura Blake
I have been dealing with a seizure disorder for about 25 years now. I too have Dejavu’s I also now recognize a smell of acidic or wires burning, also a quick extreme headache. The worse though is my heart does some crazy beats and I can not breathe correctly. I actually feel blessed that I have these pre warnings as I have been able to warn people hey get me to the floor, call 911, or family etc. I am now dealing with liver damage from the meds I have been on for 20 plus years. They want to change meds but I am scared to death.
I have been medicine controlled now seizure free for 2 years of gran Mal yet I have had petit mal . I was once ashamed but now I tell everyone as I do not want anyone to fear my disorder.
How it feels is scary always,,,,those few minutes that are gone yet feels like hours. My first gran mals I lost 2 weeks of my life in a coma and brain damage so it is always scary I never want to wake up that way again.
Kathy
It’s amazing how everyone has explained what a seizure feels like…all so different and unique. When I have a seizure, I get what I call flashies. I can be talking to someone and completely forget what I just said. Then it’s like my brain rewinds so fast to remember what I said. This all happens in less than a second…the person I’m talking to never realizes what happens. Then after a few minutes of forgetting and rewinding I have a tonic-clonic. (Which btw, sounds like a great name for a drink!). When I finally gain consciousness, I can’t remember anything except the rewinding and forgetting. And I apparently go in and out of consciousness for several minutes until I finally break through. After a seizure I’m completely exhausted, tired, and usually have a massive headache. Praise God that it has been 5 years since I’ve had my last seizure! But as we all know, it can and will happen again. The waiting is torture 🙁
Bruce wiggins
its like being on a fast bumpie train ride, talking to the person next to you they’re looking at you but not responding, it’s like I’m in a foreign land, it’s times I don’t rimimber anything
Awnryprincess
Depends on which kind I have. Some just feel like my thinking is a lil off. Some are real quick and sudden and I lose my breath for a second. Some feel like a reset button keeps being pushed over and over and over.
Jill
The auro i feel is like everything around me is in slow motion but I keep moving as if nothing is wrong. Until the moments come that I stop and feel like I am staring through a klidoscope but my world is all moving. Yes I have absence seizures. And the after effects are of course the worst. We all know what the migraines feel like. Sometimes I have bouts of what is called Foreign Accent Syndrome. It is my body’s way of ‘turning down my own sound,’ because my head hurts so much.
Ronnie
I feel like the air is crushing me from all sides. My eyes are forced shut. Everything is loud. And it doesn’t stop. I can’t relax my body at all. Everything and everyone around me makes it worse. I can’t remember
Carrie
Our son was diagnosed with epilepsy at 3 years old. His first seizure happened while watching The Wizard of Oz and he kept scooting up closer to the TV because he told us he couldn’t see. Then he said he couldn’t see us and then he had a full blown Grand Mal seizure. He will be 23 next month. He has had the complete range from Grand Mal to Focal Absence seizures over the years. He has been on numerous meds – taking Keppra, Lamictal and Onfi now. Still not controlling them completely as he had 2 absence seizures last week. He is a senior in college and is taking 2 summer classes to complete his BS Degree in Chemistry. He sometimes has a warning and he will “instinctively” call me – his college is 5 hours away – and then he goes in to the “lip-smacking” and I will ask him to sit down – I don’t care where LoL. When he kind of comes out of it he will be exhausted. Usually he will ask me why I called! I just tell him he sounds tired and to call me after he lays down. The only part he can sometimes remember is when I tell him to call me after he lays down. The 2 last week -since he was home with us – I heard the lip smacking and I just went over to where he was standing and hugged him to make sure he didn’t fall. He laid his head on my shoulder then he looked up at me and gave me – that little boy smile that he was ok – then I told him to go sit down in his room. As he came out of it before he sat down he asked, “So you want me to take a nap?” I told him sure if he was tired. When he got up the only thing he remembered was when I told him he could take a nap if he wanted to. For caregivers seizures are terrifying also BUT we can not show any fear and must remain calm because it just adds to their fear.
Angela Rogers
When I had my first seizure 8 months after brain surgery. I was on the bus. I felt a surge of energy that was like I wanted to blurt out everything I ever knew and everything that I knew on a pyschic level. It was ecstatic and full of Alchemical creation. Unfortunately I now associate that feeling with fear & terror. Then comes the stuttering then I pass out. I’ve tried to out run them but I fell backwards & hit my head. It’s a nightmare not knowing when they will come.
Sara
To me, it feels like I’m in a straight jacket that I can’t get out of, and thrown into a tub of water while everyone is watching. It hurts physically and mentally.
Nancy Clark
My seizures feel like my brain is being squeezed tightly and hard and one by one the senses that connect me to the living world are being disconnected. First smell goes, then hearing is replaced by repetitive mechanical throbbing, then speech is reduced to 1 syllable words I have to force out. Then vision goes back and I finally lose motor control.
Melissa Truell
I’ve lived with seizures for 28 years beginning at 21. I don’t remember the actual seizures but coming oeut of them I see angels and become apologetic and can’t stop crying. I think I feel bad for the person who has to clean up. My body feels like I went on a drinking binge and fell down a couple of flights of stairs. I want to sleep for hours but I also want an Epsom salts bath and aspirin. They added an anxiety medication to my seizure meds 2 years ago, it’s been almost 2 years since my last seizure.
Dena
I have fought grand mal seizures since 1979. Sometimes when I wake up of a morning I just know by feeling that I will have one that day. My ex husband could tell just by looking at my eyes because they will dialate. I would have auras (mine are colorful circles that only I can see with a black circle in the middle with movement. I have a very intense fear of the black part) and be very tired. My muscles will tense up and i will make a fist. I can’t think straight during this period. Then I will have the aura that I can’t seem to get away from and I am drawn into the circle with a feeling that starts from my toes and fingers and comes toward my heart. I know that when it hits my heart I will black out. I have tried grabbing a hold of things to keep me from falling into the black hole. I have also had the feeling of backing myself into something to prevent from falling. The whole time this feeling is coming to my heart I am extremely scared. Once I black out the next thing I know is waking up, sore but aware of my surroundings and what happened then I get sick.
I have had 3 or 4 with no warning signs at all and in my 47 years of living I have only had 46. I had 1 year where I was having 2 in one day. I feel very lucky for not having that many grand mal seizure but here lately I have been having auras really bad. It has been over 4 years since my last grand mal seizure and I don’t want any more. I am concerned about how I will be going through menopause as they tend to hit around that time of the month. It also appears that I am starting to go through menopause now, sorry if this seems like to much information but it is a concern of mine with seizures.
I have learned that if I can get someone to ask me simple questions that I should know the answer to such as 1+1=2 I can pull myself out of it. Otherwise I sleep because I am so tired. Having L Transposition of the Great Vessel doesn’t help either. For those of you that dont know, it means my heart works backwards to yours. Strong side does weak side and weak side does strong sides work.
Frankie
Mine feel like I’m on a board swaying trying to tip me over board and I get extremely dizzy and vision blacks out slowly 🙁 x
Spaz
I’d described my seizures as feeling like I’ve just been drugged and getting high without consent after being locked in a hot car with no air to breathe as worms are devouring right under my skin. I keep wanting to punch, kick, and cry it away but it doesn’t leave like that. I grit my teeth and clinch my fists as someone has set the saturation of my vision up far higher than it should be, and my mind keeps skipping and freezing as I try to speak and understand what’s being said to me. Then the bad trip is finally ceasing and the fatigue sets in, and I just want to lie down wherever I am and sleep for hours.
Dwayne
Mine feel like, suddenly my brain is trying to fall out of my head down into my body. Then a complete feeling of loss, as if my mind and body were “turned off”. Afterwards weakness and fatigue that can last a day or two.
Susie
Thank you for describing your experience. I have an infant grandson that has seizures. This helped me to understand what it is he might be going through.
Teresa
My husband had is first grand mall last year. He doesn’t remember anything and I thank god everyday for that. I watched him seize for just under five minutes. When he started to come out of it the only person he would let near him was me otherwise he was trying to fight the doctor who we know well ( we were in the Dr’s office already for our son.
Since then we have found out he has brain damage from a childhood injury that was never dealt with. The things he can tell me is before a absent seizure he smells tobacco so we know it’s coming, sometimes he just stares others his eyes can’t stop moving. The worst one came with no smell, he opened the car door and got out while we were moving and started walking ( I had just started moving so it wasnt bad) then he walked and my son followed on foot and I by car when I could pull over in front of him he was coming out of it but his moods after are always mean. He apologizes after and of course we tell him it wasn’t him talking.
I wanted to speak about how he and I are treated when going to the hospital. The time with the car I had his nurse from the Nero’s office on the phone she said take him right away. So I did the Dr we got that day told me he was fine and was drug searching. Here my husband is in pain from the shaking that happened in the car on the way to the hospital and she wants to tell me that he didn’t have a seizure. I was in shock she was even a Dr in the end our Nero Dr himself called him and let’s say he got things done he was admitted for toxic levels of depicot. He says the hardest thing is not knowing which one is going to happen. He feels helpless and scared not knowing anybody but me. He also gets partial seizures on one side of his body that he discribes as pins and needles then a numbing feeling also that side will feel either very cold or hot.
I strongly feel that there needs to be more awareness even among Dr’s. I wish also there were more support groups in smaller towns. Closest to us is two hours away and he can only handle an hour drive without having one.
Thank you for the chance to read others experience and yours.
Valentino
Hi, I’ve had Epilespy since I was 5 admitted to hospital for a whole year coz they couldn’t diagnosis me or get me on right combination. So drugged Up I don’t remember much from that year. Anyway I was diagnosed with both petimal & grand mal seizure that was defined as a child version & would go, I’m 38 they never did.
I’ve never gone a day without having fits, some days a few fits, other times easily can spend most of day on sofa just having one fit after another. I’ve never had any strange feelings, smells warning before I had one like some do. For me I would describe what happens in a petimal ; is like going down a rabbit hole & everythink goes black & I can’t see, hear, I kinda freeze like a statue, my eyes go up in my head. Like that for a few mins. Grand mal; I have less as an adult, but they can last anythink from a few minutes to half an hour, you kinda fall & start shaking your whole body, afterwards I am sick on & off the rest of day, after coming out of fit – my memory is repairing it self as I don’t even know who I am, where I am. It’s a horrible feeling ! Have to crawl about that day, my limbs just can’t work properly that day. Like they’ve forgotten how to stand. For a couple of days I sleep, my body feels like it been drained of every bit of energy that I have. Epilepsy has totally effected my life in a lot of ways & still battling neurologist to find a combination of drugs that actual work. I’m currently on epilim & lamictal.
Polofly
I do not have them but the love of my life have them and it feels like death to me like someone is holding my breath while I’m waiting for her to wake up
Grace
I’m epileptic 10 years next Saturday. I’m on lamictal which I don’t have any side effects of thank god. I have grand mal nocturnal seizures, I have never had a seizure awake thank god, I’m lucky in one sense it doesn’t impair on my daily life ie: I can drive. But I can never live or stay somewhere by myself as I can hurt myself. But it’s scary when you go to bed and wake up in hospital, for a long time I didn’t remember anything which is terrifying. But then I had a few that I did, it took me a long time to be able to explain in words how it feels, I seem to actually get up out of bed and then go into seizure but it feels like the dream when you’re falling and you’re going against the force of water as if your submerged and you can’t get your feet under you to stop. Like many people I just want to sleep and I can sleep for 24 hours straight I also tend to be very nauseous, stress & lack of sleep are my triggers.
Sarah Gordon
Falling asleep or being asleep is the trigger for my epilepsy and it wakes me over and over feeling like I’m being electrocuted
Annmarie
thank you for everyone’s comments! Our 8 year old son has had seizures since he was 18 months old. He is not able to explain how he feels. We always wondered what he maybe experiencing and just want to hold & comfort him to make the “bad” go away!! We hope and pray for the “correct” medication mix to help him to get back to what’s normal for him. We have ups and downs, constant worry and always doing something with dr’s or hospitals. If you want to know more about our son, we’ve created his own FB page “Logan’s Link” it’s helped us to be able to journalize what’s happening in Logan’s life and hopefully we are able to help others too.
DeDe
My seizures make feel like I’m sinking
Samantha
I’m 26yrs old and have epilepsy since I was 14yrs old and I unfortunately can say I’ll never come to terms with it. I’m a single mother, don’t drive or work because my health is so unreliable. It can beat up someone’s moral but hey, things could be worst. I have been on numerous medications but once my neuro found out my seizure activity was now affecting my whole brain he put me on a high dose of depakote with lamitical. I had partial seizures pretty much everyday caused by simple anxiety or not enough rest. My partial seizures usually lead to a granmal seizure. The best eat I can explain my partial seizures is spacing out for a spilt second but it feels as though my brain just got electrocuted. My heart starts racing and I begin to sweat and then they start to continue to happen. Once I go into my granmal seizure, I convulse for 2mins and wake up trying to breathe again. It takes me about 3-4days to recover. It’s all just so hard to explain. But thank you all for sharing!
Meghan Kennedy
As a fellow advocate…thank you for posting this. Seizures affect people in different ways, and can even affect the same person in different ways. When I would have an aura, it could be a sudden, intense feeling of fear, a weird, metallic taste in my mouth, or an odd, rolling sensation over my body. In fact, one night I woke up thinking I was about to have a seizure and then found out we actually had just had a minor rolling earthquake! Just like there are different types of seizures, there are different types of earthquakes. Don’t base what you know by what you see on TV!
And even when seizures are under control, it still has an effect on your life as you still need to take your meds, watch your sleep, no alcohol or caffeine, watch your triggers, and many other things to maintain control. It took twelve years to find the right “drug cocktail” and there are so many other options out there today. Remember, never give up…and don’t be afraid to try something just because it’s new or didn’t work for someone else. We are all unique!
Heidi
After playing numerous sports growing up, and being hit in the head (on accident) with a tennis ball being served by the gentleman who’d won state powerlifting the year before, I learned what seizures felt like. Pretty sure that’s what began causing them. Left temporal lobe, which is a pretty soft spot. That was 11 years ago. After maxing out on three meds, and those still not doing the trick, we learned I qualified for surgery in Feb. 2014.
Over the 11 year period, the warning signs changed. Not sure if it was from medications, lifestyle changes (foods, towns, sports, perfumes, etc.), or just the simple fact of life. At one time I’d hear the same song continously. Then over the years learned it was a country song. Then by a female artist. Since then, the song has now turned into a smell that’s hard to explain. As sweet as you can get + as spicy as you can get + a “flat” odor, if that makes any sense whatsoever. I become incredibly angry, which isn’t me at all. Every single muscle becomes more tense than anything you could ever imagine. After waking up, you feel like you need to sleep for years.
Since surgery, I’ve had one incident where I learned the experience of being an ER patient (Sept. 2014). And ironically, Friday accidently skipped meds. Early this afternoon (three days on the dot), the smell came back but that’s as far as things went. Very lucky.
Like I’ve mentioned before, they’re making huge steps every single day (meds, surgeries, you name it). Never give up. Ever!
Sammi
Mine are like I’m drifting out of reality into my own little world? Only it’s a world of panic stress anxiety and sometimes the odd convulsion! Oh the joys 😐 haha
Harold L Doherty
Hi my 19 year old son has severe Autism Disorder with Profound Intellectual Disability AND suffers from seizures. His ASD and ID limit his ability to tell us what is happening during what appears to be different types of seizures including tonic clonic seizures.
Some times he hits his head fiercely with his fists and he appears to be suffering major headaches. The following link is to my blog page showing pictures of my son enjoying a perfect morning then suddenly smashing his head in apparent pain.which I originally thought was autism induced self injurious behavior. This type of sudden SIB though has emerged with his development during adolescence of seizures.
http://autisminnb.blogspot.ca/2013/11/this-is-autism-conors-autism-reality.html
Can anyone tell me whether persons suffering seizures can suffer from severe headaches during a seizure?
Ann Tschoe
Since mine are all partial seizures, and I’d say 60% are complex partials. Mine feel like I get sucked into an ocean rip current at first (I have NO idea at all when they happen.), and rather than drowning, I’m left to float on the ocean’s surface and bake in the sun (I deeply sleep after the seizure, then suddenly wake up).
Randy
Mine feel almost exactly as yours. I just wish i would black out but because I stay awake it just seems to intensify the feelings and drive me crazy. I hate the “drowning” feeling the most.
James Budge
My auras start with an explosion of a pins & needles sensation all over my body, a fizz in my head and my heart rate going crazy feeling like it’s going to burst (I have been told it’s our fight or flight mode kicking in) I panic and get that ‘funny feeling’ of confusion & deja vu, I get ringing in my ears & go deaf & can’t speak – this all scares the s#*t out of me! I then go into the physical agony, my head twisting to the right and the shaking begins. I feel like I’m fighting against myself to stop it happening even though after hundreds like it I know I can’t do anything, it’s like im possessed in someway or something evil is doing this to me (&I’m not religious) it sounds stupid, I don’t know if anyone else feels like that? Living nightmare describes it well. When it is happening every muscle feels like they have cramp for 10mins, I don’t think people realise how painful having a seizure is. Then afterwards I can’t speak or understand what anyone is saying, my heart rate is crazy for 15/20 mins after & I can’t move all I can hear & It feels like I’m trapped and can’t get out of the situation and how it feels. Then it’s a few days in bed. (I’m having surgery on the 12th may so fingers crossed it will make it better. I’ll Instagram pics – @Jameswabudge ) x
Tiffany Kairos
James – You’ve described your auras and what you experience in a very vivid way. I can relate quite well! I pray that all goes well for you for your upcoming surgery on the 12th of May. All the best and God bless. 🙂
Renata Wettermark
I wish I knew what my son feels. He has grand mal seizures since 6 months and he is now 4. My heart breaks into pieces every time I watch him seize, those 45 Secs to me are an eternity. He’s on Keppra, Lamictal. I would like to know what the medicatons side effects make him feel. There are so many side effects. I would like to tell everyone battling Epilepsy that I pray everyday for a cure. Never stop fighting. You are very brave. Much lover to all.
Tiffany Kairos
Renata – Thank you for your prayers for all of us. I pray for your son! May God bring healing to each one of us very soon. Much love and God bless you.
Nicole
Hi there Am on same combo & perhaps ask your neurologist about increasing dosage for son as this combo, at the correct dosage, should control seizures. My epilepsy is generalised & no other combo could keep me quite as stable. Am now on max dosage of almost both combined & haven’t seized for 10 yrs.
You want to know what the meds side effects make him feel? For me, they are great. They make me feel the most ‘normal’ & as mentioned I’ve been on many as my body seemed to get used to others & I would seize again causing me stress, anxiety & humiliation. I developed epilepsy at 11 yrs of age so kids were strange & being very active in sport it was quite a blow to the ego as it disrupted my training etc.
Your son is fine & please let him not see you feel scared. That broke my heart when I saw it on my parents face. God bless!
Nicole
My daughter is 5 & was just diagnosed with Glut1 Deficiency Syndrome. She was diagnosed at 1 yr. with epilepsy but over the years the meds weren’t working. After this new diagnosis it’s said that no meds will work for the Glut1. It can only be found through a genetic test. What might help is the ketogenic diet. Which is a tough diet to get started but may help.
Mallory
I take keppra, and i used to take lamictal, the keppra makes me feel sleepy. I take one 500mg before bed and it controls mine seizure free since 9-26-2010
Laura
I feel exactly the same, my heart breaks into pieces and seizures are devastating. Even when my son is older, he has autism and and he can´t tell me how he feels, but I realize he feels awful and it takes him a lot to recover. So everything I read here helps me understand, thanks!
Anne
My son also has autism and epilepsy. You know what they say about autists? Once you’ve met one autist, you’ve met one autist. I wonder if this is the same for epileptics? Is everyone different in their epileptic experience? My son is 18 and somewhat verbal, but cannot tell me what his seizures feel like. He’s had them since he was 7. As his mom, I’m concerned that they are painful or frightening. He has absence seizures, grand mal/tonic clonic seizures, partial complex seizures and his most recent ambulatory EEG just revealed generalized seizures as well. He has been on — and failed on — many meds and combinations of meds. Right now he’s doing better on a combination of Depakote, Lamictal and Klonapin. He also has a VNS implant. But he still has 1 – 2 seizures a week. One thing that has helped with the tonic/clonic seizures is the new, oral Diastat. We are waiting for the Embrace Seizure Watch to come soon. This will hopefully alert us *before* he has a seizure, so we can make him safe and swipe the VNS.
Stephanie
My husband and I are looking forward to the Embrace Watch as well. As scary as it sounds, we want to know if our 3-year-old is having seizures in his sleep.
Stephanie
I feel the same way regarding my non-verbal 3-year-old. He can’t tell me how he feels, what triggers his seizures, or how he feels when it’s over. It’s frightening (even though his only last 30-40 seconds, he may have 5-6 in a row)! All I can do is run for the medicine and sit and hold my baby. Thomas’ seizures are fairly controlled and we only have seizures usually when mommy lets him sleep late. God bless you all and may there be a cure soon on the horizon.
Susan
Renata:
I can only tell you about my experience (I began having seizures at about 33 and am now 67, taking Keppra and Dilantin … 3,000 mg/day with both included in that). There have been other meds in the past that stopped working, so my neurologist would change me to another.
My medications and the effects of them (the same that I’m taking now) are what caused me to receive 100% disability at 63 years of age. I don’t have many seizures but they’ve been of all different sorts, including status epilepticus shortly after I was diagnosed and went into denial, stopping the medications the doctor had prescribed. The analyst who reviewed my case realized that I would not be someone lawyers would hire as a paralegal with what the meds to do me and that is what has been my career for my entire life.
My last day working was the end of my career because a “stress induced seizure” (my seizures were originally diagnosed as migraines) … had me walking onto a six lane highway and nearly getting hit by a truck. I have no memory at all of leaving the bench I was sitting on, or how I got back under our building.
It takes a lot of time to become who you are after a seizure, as you come back to consciousness as an amoeba and have to rebuild who you are, who those faces are, why are you here and what you were doing. It is exhausting.
There have been times when my life was so stressful and an aura approached (mine is linguistics … and as though an imaginary person was whispering complex words or foreign words to me) … that I would look forward to going there, rather than being here.
You feel nothing … unless you become conscious and find that you are bleeding all over the place because you hit the floor and split your head open (but as explained above, you don’t have a clue about what blood is or why those people are hovering above you).
The meds can become a part of your life that is daily everything. If you forget for him, he could be in serious trouble. Don’t do that. God bless you!
Katie
i always felt “dizzy” in my stomach, followed by my head. I’d feel like my head and guts were turning while I was sitting still. Also felt a sense of doom
Tiffany Kairos
Yes, these are senses I am very familiar with. A ride I do not enjoy being on at all.
Lara
That sounds sort of similar to my simple partial, new name simple focal seizures, that some people call ‘auras’, usually because they then generalise into tonic clonics for some, but mine only come by themselves. If that ever happens to me I’ve certainly never remembered or known about it later. I get a funny feeling in my stomach, then the feeling like going over the top of a roller coaster, then, it’s like everything zooms out around me and is all sharp and pointy and then zooms back in all round and cloudy. These are not visions though, just a very strange feeling. Also with a rising heat in my stomach and chest. For all the others – complex focals, tonic-clonics and tonics, I only know they’ve happened when I wake up in pain, feeling really sick, ultra tired, not remembering anywhere from half an hour to hours beforehand, and that after-seizure most horrible feeling in the world. I wish I knew when they were going to happen so I could get somewhere safe. I don’t have any identifiable triggers, they just happen whenever they want to. Not remembering is so weird, once I had about five on a plane and forgot that I had flown to London! Three days later a strange wake-up for sure 🙂
Lara
I must say, I reckon they’re a lot more than an inconvenience, unsettling and uncomfortable, I wish that’s all they were!
Anonymous
To me a every seizure is another knock on deaths door
Amy
Same…I think I get nocturnal focal aware seizures. I sit straight up usually saying “hi, hi, hi” or my husbands name 3 times. I feel like electricity is coursing through my vains. It’s so intense that if the level increases anymore, everything will just short out. I just stare out and breath through it, but can hear my husband (just can’t respond until it’s over). They are always short (under 2 min) although my last one was a bit longer, and I feel weak, hands/arms/legs shaky. I usually just go to bed right after…but it’s sways the same and I always feel like I’m not going to make it next time around
Matt Gutting
Wow. Ummmm, first thing I notice, I can’t talk. My brain thinks it can but nothing comes out. Like my mouth is being held shut. Then I can’t move. Like I’ve been wrapped up in mummy casings. Then somebody starts whacking and whacking and whacking me. I don’t want to pass out, I know I will, but I can’t wait to not feel this any more. I wake up and start piecing together what happened. I have lots of time to do that, I’ll be too weak to do much of anything for the next 24 to 48 hours anyway.
Fortunately one like that hasn’t happened to me in years. But that’s what I said to myself right before I mysteriously developed tolerance to my Depakote. The Trileptal is working – so far; and I’m glad of it. But I don’t depend on that being true forever. I can’t.
Trev Altaan
It feels the same to me.
Robert
I developed pancreatis after taking Depakote for 20+ years. My seizures are mostly from lack of sleep, however I’ve had them since 18 months of age. My wife has figured out when one is coming on by the way my eyes and eye lids move. I have fractured my neck from falling off the porch and a few other things.
I can carry on a conversation before the seizure and move from place to place. I do not remember any of the conversation or what happened or where. I usually end up in ER by ambulance not knowing how I got there or who all these people are either. My wife says I usually move to my right when they start and then I end up on the ground usually from falling when I pass out.
Rebecka lamb
Thank you very much for sharing your experience! It makes this alot easier for me and others to talk openly. I have had grand mal seizures for the last 19 years, after a tbi. You’re right. Maybe you kinda get used to it, but it’s never any fun, especially in public. Just glad more and more people understand. However, there are still too many people who know nothing about it! My experience is similar to yours. It all begins with very strange, strong sensations they refer to as an aura. In my case, it starts with a powerful feeling of deja vu. Then I start going numb and tingly, beginning with my face and finger tips. I feel it spread across my body. At this point, if someone is around, I usually say something. To this day, these sensations frighten me. I think because I know what’s coming, but I don’t know what is going to happen next. After that, it’s like blanking in and out of reality, in some kind of haze or fuzzy dream, with my head in a vise. Then, when fully conscious again, I take note of any injuries, and get to hear all about what happened. I live it, but I don’t really, because I don’t remember. Very odd feeling!
Hiram
Thanks for sharing Rebecka, that’s exactly how I feel them too. In fact is a very odd and sometimes painfull experience.
Regards.
Christina Rahn
The worst for me is laying there knowing I’m not ok thinking I’m yelling for help but can’t talk and finally hubby feels me moving and I come out of it crying , scared to death very emotional ! Or I wake up and feel like I got kicked all night long ! My body hurts so bad and I’m exhausted see light in corner of my eye and I can tell sometimes I’m having them again. Scared isn’t the word it’s terrifying and if he yells at me to stop crying I want to be with my daughter who is grown as she understands to keep calm as I’m very scared
tkairos
Rebecka – I’m so sorry for all that you’ve been through. It is a blessing that more people are becoming more open and more accepting. It is my hope and the hope of all of us that more people will want to learn more about this condition. That they will open their minds and their hearts to learn. Yes the deja vu experience is strong. I know of what you speak very much. The more people are vocal about these experiences, the more stigmas we can hopefully break down.
God bless and all the best to you! 🙂
Georgina
Wow, you described how I feel pretty much to the letter. The tell tell signs that a seizure is about to happen is one of the most helpless feelings. All you can do is make the most of what few moments you have to sit, move yourself away from your surroundings (if you have the time) then simply wait for the wave to crash over you.
Jackie
Thank you for sharing Rebecka. Although I don’t get them very often, mine are very similar. My aura is sort of like a deja vu. It’s the same thing every time. A little girl with short dark hair walking towards me. I have come to realize that when I see her it’s about to hapoen. I have maybe 3 seconds to yell for someone and push stuff out of the way. When I come to the paramedics are usually standing in front of me asking me simple question’s like my name and such and I do not know the answers. My mouth is usually bleeding because I bit my tongue and I am crying because once again my young teenage son had to witness it and kind of become an adult and handle things until the paramedics come.
lisa
Your descriptions are spot on & have helped me a lot since I am still new to seizures. There are moments when I am trying to take a nap and I will lay there and the ‘episode’ happens and I feel myself trying to catch my breath and I feel as though I reach for my phone to call my husband for help because I can’t breathe. It seems like it lasts for minutes, but I’m sure it doesn’t. It goes away & I realize I haven’t moved I’m full of sweat and my body is so tired. In my memory, I see myself do something, but in reality I am not doing anything. It’s very strange. As I mentioned, its very new to me. Thank you for your blog.
tkairos
Hi Lisa 🙂 How long have you been living with epilepsy? I know it can all seem so strange and even frightening. You will, at a point get a good grasp on it as you battle back. Learning your seizure triggers, adjusting medications etc. And of course, always know, you are never alone in your fight. 🙂
All the best to you and God Bless!
Christina
The worst for me is laying there knowing I’m not ok thinking I’m yelling for help but can’t talk and finally hubby feels me moving and I come out of it crying , scared to death very emotional ! Or I wake up and feel like I got kicked all night long ! My body hurts so bad and I’m exhausted see light in corner of my eye and I can tell sometimes I’m having them again. Scared isn’t the word it’s terrifying and if he yells at me to stop crying I want to be with my daughter who is grown as she understands to keep calm as I’m very scared
dee
I felt like a timebomb after my second one about 2 1/2 yrs. ago. had about 3 more. Seizure free now. Still feel like a timebomb sometimes. When I had them, felt like I was turning my head then everything blacked out. Felt confused & so disoriented when I
woke! Great post!!! To me one word explains, timebomb. I try not to think about it. Thanks for sharing!!
Leann Goerdt
A seizure to me makes me feel like I was in a deep deep sleep with no dreams. No triggers. Just pure darkness. granmal seizures leave you unconcious and unaware of your surroundings. I don’t feel seizures because I am not awake, but I can tell you this, the outcome of a seizure feels like an out of body experience. You see differently and you can’t make out what just happened. It feels like a trap.
Sean Melody
I know that feeling all too well. I have been dealing with an uncontrolled seizure disorder with at least 3 verified types of seizure. I experience granmal/tonic-clonic seizures a minimum of 2x a month. And that is in very rare times. Most of the time it is closer to 3+ per week. And you have hit the nail on the head.
Moira
My grand mail seizures. There’s is no trigger, no taste, no aura, no sensation, no pain, just a nothing. I usually become conscious in an ambulance or hospital. It’s very confusing I don’t know where I am, who people are, what things are, although apparently I seem normal and have normal conversations. That is frightening although not at the time as I don’t recognise frightening only confusion. I just want to sleep. I’ve sometimes had many grand mals over short periods. These leave me exhausted and take many months to fully recover from
Mallory
This is exactly what mine are like! I’ve never ever met anyone who could explain theirs the way I did. I have mine in my sleep and I lost my drivers license and it took me forever to get it back even with neurologists letters. Email me sometime, mallorywilks@gmail.com
Steven
I am blindfolded and dragged unwillingly into chaos without a way out.
Hillary
Great description
Tim
My auras are like a nauseatingly sweet smell/taste sensation that turns into stark raving terror and then I blank out. Afterward, nothing makes sense for a while, and the only way to get back to “normal” is sleep for hours.
tkairos
Tim – You have an excellent way of describing your experience. Sleep is a great way to make things right again, I’ve found as well. Allowing your mind to rest and recover.
Leigh Ann Spangler
Love that! Mine too except for the smell. mine is a deja vu where I’ve been here or experienced this before and I remember it didn’t turn out well. Then comes the blood curdling terror and then fade to black.
Lesley
Sometimes I get a strange scent/sensation in my nose; Always quick onset dizziness and nausea and rapidly lose consciousness. Sleep is essential afterwards.
Diane
Mine feel like I am on a very bumpy train ride that will never end.
tkairos
Diane – What a very interesting description! I can relate very well.
SHERITA
IT FEELS LIKE IM GONNA DIE! SOMETIMES IT FEEL LIKE SOMEONE IS DRAGGING ME INTO ELECTRICITY
lonewalker
Hi,
I can see that people haven’t posted on here for a while, but this is all really new and confusing for me. A few weeks ago, my son started having hallucinations – started off with frightening images but the last two episodes have been him seeing himself/feeling himself drowning and then yesterday seeing himself/feeling himself being electrocuted. He stays conscious, I think, but can’t remember what is going on and is really exhausted afterwards – and terrified. We have seen doctor who thinks it is a form of epilepsy and waiting for a neurologist appointment but it doesn’t seem like any type of epilepsy I’ve heard of? Does it make any sense to anyone? Thank you so much.
Tiffany Kairos
Hi Nikki –
It is good that you are seeing a neurologist to determine what this may be. In my personal opinion, this sounds to me like he may be experiencing auras or complex partial seizures. In your visit with the neurologist, ask him about this. I will also take this question to the TEN Community. Feel free to visit The Epilepsy Network (TEN) Facebook page to read any responses to your question from community members. 🙂
All the best to you!
Tiffany Kairos
Ashley Rogers
Hallucinations are definitely a part of epilepsy. Had them when I was a child
jody
I had Epilepsy ad a child 13 years. I put grew it. Mine was from a head injury when I was 3years old. Cracked my skull. Now 23 years later I am a mother of three beautiful daughters and my middle daughter has always had some eccentricities. I thought perhaps autism. But about two years ago my lil mini me was becoming my lil space cadet. Though myself always being sensitive to ANYONE WITH SEIZURES. I was noticing that she was spacing out for more than twenty seconds. Well my baby was diagnosed with not one but two types of seizures. SPIKED WAVE SEIZURES THAT AFFECTS HER WHOLE BRAIN AND FRONTAL LOBE SEIZURES AFFECT RIGHT FRONTAL PART OF BRAIN. My lil girl was having over 200 seizures a day. Though she is smart as a whip. Going into 6th grade reading eighth ninth grade level. NEXTschool year. My smart girl. So I am a mom who KNOWS WHAT YOU ARE ALL GOING THROUGH. God bless you all.
Kim
It starts with a tingling in hands and feet, you go pale and start to sweat terribly because you’re terrified of what is going to happen.Then you feel like there’s a weight on your chest and you can’t breathe or speak and then you’re out. Sometimes you hear things or see flashing lights and sometimes you feel nothing. If you hear sounds they’re usually very loud and when you’re coming to and you can feel your body convulsing. When you come to you’re very confused. It often takes several minutes to figure out where you are and you have terrible fear. Once that subsides you feel like you were hit by a truck and want to sleep for days. I often get chills after too. Compare it to a car accident…it tears you up. I have tonic clonic seizures about 3 times a year for 25 years.