What it’s like to have a grand mal seizure
I wrote this account one week after having a grand mal seizure, and two weeks before having brain surgery to remove the tumor that caused it. At the time I was still having seizures every few days, and just the act of writing about the first seizure in such detail almost brought on another one. I initially planned to keep this account private, but after two months, I’ve decided to share it, if only for the fact that it might be useful to others who have had or will have a similar experience.
It was late on October 28th and I was laid out with my eyes closed on a row of cushions in a tiny house just outside of Yemen’s capital, Sana’a. I had several hours to kill before my flight, so my guide, Jameel, had brought me to his house to meet his family. After seeing that I was tired he insisted I lie down, and his wife brought me a blanket. Their beautiful young daughter sat beside me watching a Turkish soap opera, the volume down low.
As Jameel and I were leaving for the airport, his wife stopped me in the hallway and handed me a necklace of dark blue beads. They were hers, she said; she wanted me to have them so I would remember her. There were warm goodbyes at the airport, confusion at check-in, and then the plane took off. After eight hours of tiled purgatory at Dubai Airport, it was finally time to reboard the plane: next destination, Beirut. I was exhausted.
My head resting against the window, I was swimming around somewhere between awake and asleep when I felt my mind fall through a trapdoor and into a vacuum. Suddenly, there was no ground for my mind to land on. No language. No concepts. Anxiously I grasped through the smothering black for an idea, a word, something I could articulate. Nothing. Just black.
Then I felt my eyes roll up in my head. On a slow, steady rhythm, they started jerking forcefully to the right. Language flooded back i’ve lost control! and jerk, jerk, jerk, further and faster my eyes pushed to the right. Breath quick and shallow now, eyes so far up and to the right they pushed painfully against their sockets. My head jerked too now, like it was being dragged by my eyes jerk, jerk, jerk, I tried to push out a sound, a grunt. Nothing but spittle.
In full seizure now, shaking uncontrollably, I could still see out of the very corners of my eyes. There was no-one sitting next to me, and the man two seats down was staring into his iPad. I couldn’t talk, shout, scream someone pay attention to me now! look at me right now! my head is going to twist off! Now now now I was shaking violently, silently, up against the window. Eyes pushing, pushing, head convulsing, trapped, exploding. Thoughts spitfiring, futile it’s hurting someone make it stop I can’t scream LOOK AT ME!
Consciousness shredding, I dragged movement from somewhere inside me and heaved myself across the row and onto the man’s lap. He looked down, eyes wide.
he sees me! thank god
spittle foaming now, mouth shuddering, seizure in full flight.
throat seizing, can’t breathe if I don’t pass out I’ll die
‘Medic!’ I heard him shout. Immediately a flight attendant appeared, flustered – ‘Calm down’
it’s okay i’m seen *calm down* hahfunny and down, out of the shaking, into a different, gentle darkness
i’m not dying
letting go, going still, taken care of
so grateful
Unconscious.
“ARE YOU COMING TO BEIRUT TO PARTY?” A young woman in the seat in front was turned towards me, talking to me like I was a child. She handed me a bracelet of dark wooden beads. “Here, have these. I make them.” I thanked her, and leaned back in my chair. The man in the row behind asked how I was feeling. “Tired,” I smiled. Why is everyone being so nice to me? Do I look terrible or something? I got up to go to the bathroom. My legs feel weird. The flight attendant told me not to lock the door. Is it broken?
Back to my seat. Nobody was sitting in my row. Where’d that guy go? I wasn’t in my chair. I looked across at the window chair I had been sitting in. It was wet. Oh my god. My pants were wet. Oh my god.
“What happened?” I asked a passing attendant. Perfect hair and make-up knelt down beside me. “You had a seizure.” A beat. Then it came at me in a rush. Just stay calm. We were about to land. People were disembarking. I was at the door of the plane. My legs were collapsing. “I need a wheelchair.” An airport employee arrived with a squeaky standard-issue, loaded me in and pushed me hastily to customs, through the empty U.N. line, to the baggage carousel. My bag was there mercifully quick. “Welcome to Beirut,” he repeated nervously, pushing me out onto the street and towards a taxi. Taxi driver took my bag. “Ten dollars,” the wheelchair man said. “What? No fucking way!” I replied furiously. “Ten dollars, ashura,” he pushed. “Get fucked,” I said, and climbed gingerly into the cab.
Welcome to Beirut. I sat quietly, collecting myself. Then to the driver, “Twenty dollars, to Gemmayze, ok?” “Thirty.” “Look, I know the price, it’s twenty,” I sighed. Driver shook his head. “That man, he just made me pay him ten.” Fuck. Don’t cry.
When the taxi pulled up my husband David was on the road outside our apartment, eyes frantic but steady. On the concrete stairs I stammered out what had happened. Into the apartment and put down in our bed. David rushed next-door to the Lebanese Red Cross, whose volunteers we could see smoking every night from our back verandah, and came back with our friend John. Vital signs were normal, he said. “But go to hospital now.”
Up to Sassine Square, where a car bomb had killed eight and injured 78 the week before, to Hotel Dieu, the hospital where they were treated, through to Emergency, hooked up to a drip and into the MRI room. Alone on the guerney, silent but for the loud machine bursts that were scanning my brain. Out, and back in. They needed to double-check something. Then a nurse squirting tiny, cold shots of gel into my hair, preparing for an EEG. More scanning. Then back to the hospital room to wait.
Some time later, a doctor came into the room. “We’re not prepared to call it a tumour yet, but there’s something on your brain.” They wouldn’t know anything more for many hours, probably not until the next day.
That night on a single cot bed David and I somehow managed to go to sleep, curled tightly around each other. I don’t remember much, except for a few times when we looked at each other and really let the fear in, then held each other and thought it will be ok. Just like it was going to be ok for everyone in the hours before they got their diagnosis.
What I remember most vividly from that night is opening my eyes just before sunrise, and watching the first rays of the sun filter softly through the window. The light was so beautiful, so simple. I lay there quietly, watching it as it brightened, and wondered if that day, some doctor was going to tell me I had cancer.
The sun came up slowly, and the streets of Achrafieh began to bustle. I don’t know what time it was when a doctor finally came into our room to tell us the tumor wasn’t cancerous. I think we were relieved, though I can’t remember what that felt like. He told me what pills would manage the seizures. We paid the bill, and David and I left the hospital, hands clutching tightly.
Over the next three weeks, I continued to have smaller seizures, until my operation on November 17. I kept notes about this limbo period, too, which I will post here soon.
jessradio 
Thank you for sharing this, Jess. I look forward to your future posts on this topic.
Thanks for commenting Andrew, I finally posted a follow-up blog the other day.
What a terrifying experience. Thank you for sharing. I hope you’re doing well after your op.
I have had that experience several times, but have not been able to get up and walk, or remember who people were, or where I was for many hours. It once happened on an escalator in a London railway station. Luckily for me, it wasn’t a tumour, but epilepsy which I appear to have now ‘grown out of’. Good luck with your recovery.
Closest to gran mal experience I’ve read. Been epileptic all my life, mercifully fits are now controlled with medication. However, look back with humour. During one fit was restrained by Police Officer who thought I was resisting arrest. Things only got worse when I couldnt answer his questions as only half conscious and tounge swollen from being bitten. Glad your ok now. If you travel get note from Doctor explaining why youre carrying medication across borders, it can be awkward if your carrying a lot.
Nicely written. I like how you describe the feelings, they resonate with me.
I wrote (and still haven’t finished, actually) a blog about my time with a brain tumour and the epilepsy it caused – luckily I never had a seizure on a plane though.
Best of luck with your recovery – depending on how you feel about it you might find my blog helpful:
http://finneyonthemend.blogspot.co.uk/2012/09/bit-disappointing-if-im-honest.html
Excuse the bad language!
Chris
P.S. Look forward to reading more
Jess thanks for being brave enough to share this writing. So pleased you’re out the other end now. Your writing as ever is brilliant. I look forward to hearing where you land next
Hey Jess, your courage humbles me. Brave girl! I’m so glad it was benign 🙂
Thank you for your account. Your writing helps illuminate the world. Please don’t ever stop.
Thanks for sharing this. My son has epilepsy, though his seizures are controlled by medication. A few months prior to his second birthday, out of the blue he had four grand-mal (tonic-clonic) seizures in four days. All MRI & EEG tests came back clear for abnormalities. Idiopathic juvenile epilepsy. He had 3 more a couple of months later and we went 20 months before another one. Now we’re a month past that and praying that he will indeed grow out of it, as the numbers indicate we have a good chance of. Yay numbers.
It’s really good to get some perspective on what it’s like inside the seizure. Thank you. Very much.
thank you for this.
Thank you, that was an amazing story. So sorry to hear how your employer treated you – it was disgusting.
You have written this very well and very accurately, from the initial auras to the surreality as your brain arranges itself into place post facto, to the lingering despondency. I was diagnosed with epilepsy a few years ago and now live in New Delhi. I still haven’t had the courage to write about it. Living with the threat of seizures hangs over your life like a ghost, as I’m sure you understand. There is nothing, nothing, I fear more than having a seizure in public, and especially abroad. Your choice to write about all of the medical issues you faced, and faced so recently, reveals the incredible depth of your courage. Thank you for letting your ghosts speak.
That was really profound, thank you for sharing… I felt you so alone at that moment, I guess we are alone in our minds. The fact you can articulate that is impressive… Now, I’m searching to see if you’re okay, wanting to read that you are… wanting to know. Thank you for sharing something so intimate that some of us will never understand but can glimpse it…
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Superb writing. I’m sorry you had to go through such a horrible ordeal, but you killed it at the keyboard.
It is amazing to read your memory during the seizure. I know the sensations prior to a seizure well, but mercifully have no recollection of the time during the seizure, only the fearful retelling from my spouse. Your recount makes me doubly glad I am not aware while having one. Thank you for having the courage to share.
I agree… I always remember the auras & twitching right before it happens, then my heart starts pounding and my whole body sweats…. and then I’m drearily waking up with blood running out my mouth and I think, “yep, it happened again.”
My beautiful fiancee, Abbe is an epileptic and I have witnessed several of her grand mal seizures. I had never seen one before we started dating. I rank it just below child birth in the holy-cow-how-does-a-human-being-survive-that category. I am so grateful for you posting this – most people know so little about seizures unless they have a family member or friend that experiences them.
A year ago, Abbe and I were getting ready to take on the Goofy Challenge – a half and full marathon on consecutive days at the Disney Marathon. The day before the half marathon, Abbe suffered two grand mal seizures. The second of which meant she was kept for observation and not cleared to run with me during the half. I had to run for the first time without my running partner. I ran those 13.1 miles angry and upset at her seizures for taking my girl away from me that day. Amazingly, Abbe was cleared to run the full marathon the next day and we finished happy and healthy. I tell everyone that my 39.3 miles is nothing compared to what Abbe accomplished. She is, along with my children, my heroes.
I am so proud of Abbe and all of the families and people suffering from seizure disorders. Once again, thank you so much for posting this.
My teenage son just had a grand mal seizure for the first time about a week ago. I found him at 3 in the morning. We had no idea what was happening to him and could not wake him. He seized once more in the ER and spent two days in the hospital as they ran all kinds of tests. Still no idea why it happened, or if it will happen again.
I agree with everyone else. Amazing description of what a grand mal is like for someone. I am a parent of a four year old who has several different types of seizures, including grand mal and he is for the most part non communicative. He would never be able to explain to me what a seizure feels like and sharing your story does. So thank you.
Thank you for sharing, my 4 yo son has had seizures since birth, I’ve wondered so often what he goes through since he barely talks. Thank you for giving me some insight
Hey Jess, awesome (yet horrifying) blog post. I write a blog about living with epilepsy…and I have had an experience of having several seizures on a plane (in North America) and it was terrifying. Check it out: http://sitagaia.wordpress.com/
Thank you for sharing your experience. As someone who has grand-mal seizures, I know the feeling all too well when you open your eyes and a bunch of strangers are standing around you…talking to you like you’re a child. It’s very frightening to lose time. I hope all is well with you now. My seizures are under control with medication.
Thank you Jennifer, I’m doing much better now, though it’s taken some time to feel a semblance of normal again after the surgery. Do you mind me asking what medication you’re on?
The first medication (Depacote) controlled my seizures, but I gained an enormous amount of weight in three months, so they changed it to Topamax and now the weight is back to normal and the seizures are controlled. I do have auras just before my seizures…so, it’s sort of like a warning.
Wow, I am so glad you were able to get this operation. So very brave of you to share your story.
I have simple partial seizures, with a Deja Vu experience and thankfully no loss of consciousness but I am left feeling afterwards that my entire day was just a dream. During the seizures my very being is screaming to escape but escape does not yet come during those very brief moments that feel like an eternity.
I wish good health to you and thanks for sharing.
Wow, that’s a vivid description, and much the same as how I felt. Like a fight is going on within yourself. Isn’t the mind/brain a fascinating organ? How often do these seizures happen now?
Hi Jess, Yeah the Mind/Brain is amazing. It really urkes me knowing that psychology and neurology are viewed and treated two separate entities when they are so intertwined.
I use to have seizures twice daily years ago but soon I discovered on my own (and also with lots of research and the help from everyday people posts all over Internet) what triggers my seizures. I eliminated these items (Soy, MSG, Artificial Sweeteners, Sage, Balsamic Vinegar) and went an entire year seizure free and off meds. I don’t recommend anyone doing this without evaluating your own situation and triggers or tapering off meds without discussing this with your neuro.
Lately I have been having one about every month but I was displaced during Hurricane Sandy and had to eat out a lot. Not recommended when you are trying to avoid certain foods and additives.
I also use natural toothpaste (e.g. Tom’s of Main) without artificial sweeteners (all the big name labels have it). I also avoid being near artificial sweetener packs when they are being opened. Very challenging as my job as a recreation aide sometimes requires me to serve coffee to the residents. Trust me, even if the dust from the opened and pour packages distributes throughout the air (and it always does) and gets into my nasal passages or onto my tongue I will have a seizure within 48 hours, each and every time!!!! Yes, even just a slight, teensy tiny bit on my tongue.
Also, KEEP HYDRATED. I cannot express that more. Very Important!!!! I keep a bottle of water with me at all times and I know when I dehydrate to a certain point it will trigger a seizure. I am trying to stay in tuned with my body and recognize the early warning signs and take preventative steps as best I can. It is a challenge reading labels constantly and educating friends and family (they are very accommodating and supportive).
I use to love Balsamic dressing, Tofu, and Ramen Noodles (has MSG), but my drive to stay seizure fee and protect my brain overrides those past desires.
For my first grand mall I don’t remember anything 5 minutes before. My second I was aware of everything and couldn’t have described it better. Thank you so much for sharing
Wow, would love to hear a bit about what it was like for you. Do you know why you were having the seizures? Was it epilepsy? If you feel comfortable, perhaps you could email me at jessicahelenhill@gmail.com. But of course, there’s no pressure; it can be a painful thing to revisit.
Thank you .. Please , please keep writing … Best seller , even before its written …
Thanks Andy, too kind
Thank you for sharing this. It is so hard sometimes to tell people about this stuff. I remember in 2008 I was on a flight and had a seizure, and they made an emergency landing in Puerto Rico, and I “woke up” in the ambulance on the way to the hospital. I felt horrible…having to cause that whole thing. I now fear flying so much because of that day…only because I fear I am going to have another seizure and cause another incident like that. But, I still do! I just talk to a flight attendant before every flight now so they will know what is going on.
I hope you are continuing to feel better!!!
🙂
Good on you for continuing to fly Chris – what an ordeal. I was worried I might have a similar fear of flying, but when I flew back from Sydney to Beirut on my own a few weeks ago, everything was fine. But it’s strange with this stuff – sometimes you don’t know what you’ll be afraid of until you do it! Have you had any seizures since, and did you get any diagnosis?
That’s amazing that you can remember the whole thing – I can remember what happened just before my first grand mal (aura of purple lights) but after that everything went black and I woke up in the hospital 4 days later, no recollection of my sister calling 911 or the paramedics or being resuscitated. Maybe because all my seizures originated in the temporal lobe it kept me from remembering them. But waking up to wet pants is no fun either, had that happen too. It’s easy to feel very alone with a seizure disorder, nice to hear from someone else who’s been there.
Hi Cindy, gosh – four days, it must have been so bizarre for you to wake up and find out what had happened. Thank goodness someone was there to call an ambulance. My neurosurgeon said the reason I could remember the seizure so vividly was because it started as a focalised seizure in my frontal lobe, and then generalised into a grand mal (or tonic clonic), at which point I passed out. There’s quite a bit of mythology out there on how to deal with people who have seizures, it seems – would be interested to hear what helps you, I found that just having someone put their hand on me and reassure me that everything was ok would generally calm me down, and was the best thing they could do at the time.
Great story and description from someone who has had a grandmal seizure!…mine are different…I fortunately remember nothing wake up crying confused etc….just interested do u know what type of tumor you had? I was seizure free right at 9 yrs then my seizures began again and haven’t been under control since. When they started back a pineal cyst/tumor was found on scans that I’ve never had but even at university Alabama my neurologists continue to brush this off…I am a nurse and have researched this subject…anybody else having same problems???
Thanks so much. I had a grade 2 astrocytoma, and it was in my right frontal lobe. Apparently that’s why I was conscious for quite a while during the first massive seizure – it focalised in my frontal lobe at first, and then when it generalised I passed out. I’m afraid I don’t know much about other kinds of tumors – are you on anti-seizure medication now?
Great description! Mine do not occur this way I fortunately never remember anything! What type of tumor did u have? I had been seizure free for 9 yrs then they started back…I have juvenile myclonic epilepsy 14 when they started 37 now….but last yr when they started back the scans showed a pineal cyst/tumor that I’ve never had before…my neuro’s don’t want to consider it may have something to do with it….anybody else with this problem
By sharing this article you have shown much grace under enormous pressure. I wish you all the best for a speedy solution and cure. Go well.
Thanks so much Shaana, that’s really lovely of you to say. Luckily the surgeon was able to remove the entire tumor, so now I just have to get MRIs every three months for the next three years, then twice a year for life to make sure it doesn’t come back.
Thank you for this story. I had my first grand mal on 12/30/12 followed by five more in four hours. I was diagnosed with epilepsy. Its stories like this that make me feel that I’m not alone. I wish you the best in your recovery.
Five more in four hours? God, what an enormous experience! How long did it take you to get over that incident, and do you still have grand mals?
That’s very brave, Jess, and heartening to see that 15k people have read this post. 3 of my family are regular fitters, only 1 epileptic. and the stigma is really hard – it’s great that can speak so bravely about it.
I can’t imagine living with the constant threat of seizure – that must be so difficult, and tiring. I still have myoclonic seizures, and can occasionally feel myself tightening as if I’m about to fit, and when I’m with other people I do get really nervous, even if they’re good friends. But I’ve also found that through explaining to other people what it feels like inside the fit, that stigma feeling is slowly breaking down… Slowly. Best of luck to you and your family members.
I don’t even understand how I stopped up here, but I believed this post was once great. I don’t know who you are but definitely you’re going to a well-known blogger if you are not already. Cheers!
I just re read this Jess,on my first reading I was struck by your description of the seizure…on the second there was an overwhelming sadness that you went through that alone.Your one tough,brave lady and sharing the experience may give others strength.Thank you.
Thanks so much for your comment Sandra, I really appreciate it. The funny thing is, I’m sort of glad to have gone through part of it on my own. In many ways it feels like it’s changed me for the better – especially because there was great support on the other end. Certainly wouldn’t have wanted to go through the whole process alone – can’t imagine it. But weirdly, I’m almost grateful for having had the experience.
Good post however , I was wondering if you could write a litte more on this subject? I’d be very grateful if you could elaborate a little bit more. Thanks!|
Thank you so much for sharing. My ex wife has grand mal sezuires and I remember the first one, it happened right after we got married and she never had one before. I was terrified and felt helpless. But now I understand more and grasp the feeling and what happens to your right before you have a sezuire. She always tired to explaining it to me i just never got it, but you described it in such detail. Thank you so much.
Hi David, thanks so much for your comment. I was fortunate (I guess) to have had my grand mal start as a focal seizure, which meant I was conscious for much of it, until I passed out. I would have trouble recalling it now, I think, if I hadn’t written it down so soon after having it. Memories of that time move through me like vapor now, and if I didn’t have my journal to look back on, I think much of it would have escaped me now, besides the particularly prescient moments. Some of those will remain with me for life.
when I took my first really bad fit it was in the local jobcentre was hilariously funny well I thought it was all I could here was she not throwing up all over me not one of them had any medical care plan I was lucky though I knew it was going to start I told her a few seconds before i went down move everyone away im going to have a seizure i even managed to get myself onto my side not to hurt myself was so strange being able to get myself safe and then come out of it word of warning to all staff who work in jobcentre get yourself some basic training in medical care you could save a life
I’ve had 17 seizures since I was 16. I’m 27 now and I would like to talk to someone who’s had them. More specifically, something that happens during/after them.
I call it the “Void”, is the only name I could come up for it. It’s terrifying.
I’m worried I”m losing my mind.
If you’ve experienced this please reply.
Thank You.
I’ve had many.seizures and this “void” is it like nothing just black darkness during your seizure? It’s very scary. Makes me afraid of death. Im 23 and mine started when I was 15 and IM estimating that I’ve had at least 30 grand mals since they started.
I am crying so much for you. My boyfriend, Tre, has a brain tumor. He had the same one 10 years ago and it came back in the same spot. He recently had surgery Dec of 2012. Due to its location because of the risk involved they were unable to get all of it. He had blacked out that Nov. which is how we found out about the tumor. He completed radiation in May of 2013 and has been taking keppra since this all began. Well he started to seen himself off of it because he gates meds to begin with. Yesterday morning he had a full blown seizure. I have never seen this before. He first started with this shrilling sound. He got louder. His muscles tightened and curled and before I knew it he was convulsing. Luckily this took place in bed and he moved in his back. He was much to heavy for me to roll him on his side so I held his head slightly up so that he wouldn’t choke too much on saliva. He was foaming from the mouth terribly. His eyes were in the back of his head. This seemed like a lifetime too watch. He went from a normal color to yellow to white. He stopped and laid very still. His eyes were flickering and his breathing picked up rapidly. After a few minutes he sat up and looked at me with fear and than anger. He did not recognize me. His muscles were weak and he could barely walk. I had him rushed to the hospital. They believe that because he stopped taking his keppra that it caused this seizure to happen. He went from taking two a day to one a day and the day before the seizure he didn’t take any. I hope this incident was because of him not taking his keppra abd not something else. It worries me that it happened from not taking the complete doses. He is a very stubborn man. I have never been so scared. It’s scarier to know that he has no memory of it either. He doesn’t know how he got into the ambulance or why. He told me he thought he was sleep walking because he had plans on going to work after this ended which he thinks after his sleep walk ended. I told him it was def a seizure. I hope to never see that again. It was much to scary and no one deserves to go through that. Your story made me tear up because it made me wonder if there was somewhere in his brain that he was screaming for help, but he has no memory of the odeal.
I needed to thank you for this fantastic read!
! I certainly enjoyed every little bit of it. I have got you bookmarked to check out new stuff you post…
I am 13 years old and I have epilepsy. It kind of sucks especially when I have a seizure in school and the way that you described it was perfect. One of my best friends is on what my school calls “seizure duty” and I’m not allowed to go anywhere in the building without her. I have about one to two seizures a week, and Kaitlyn is in charge when they happen. She also rides to the hospital with me from the school. She rides my bus, and I have to sit next to her. Also, I have to sit with her in my classes, walk with her in the hallway, and when one of us goes to the bathroom during school hours, the other one has to go too. I’m used to it now considering its been 11 years of having seizures. Everyone at school makes fun of me though, and from the time I was 5 to the time I was 8, I was in a wheelchair, but now that they don’t happen that much, anymore, I don’t need one. Your story moved me, because I’m not even allowed to ride on a plane anymore. It makes me mad that I miss out on so many things, but I’m used to it.
This is rather late for a reply, but your story brought me to tears :'(. It breaks my heart that your ignorant, immature classmates make fun of you and that you are prevented from experiencing many things in life that so many people take for granted. Wish I could have reached through the screen and hugged you. I too have epilepsy, was diagnosed when I was 14 (1991) and I am 36 now. Thankfully I only had nocturnal seizures and the only person that ever saw me have one was my mom. Then I went 7 years seizure free…I still took medicine and it controlled it 100%.
In 2010, and we still have no idea why, I started having them when I was wide awake. Never have an aura they just happen. Over the past 4 years I have had close to 75 seizures and I too thought this explained it perfectly. I know it can be hard but keep your chin up and know that you are never alone :).
I now tell you, some of the things I have had to deal with! First thinking Aliens are taking you, then realization it’s a Brain Tumor, then prior to surgery, almost killed by wrong drugs. Then 12 hour 3 team surgery (looked like Frankenstein) followed by a bout with meningitis due too short a period on antibiotics. Then came Auras (pre-seizures) leading to “the full Monty” Grand Mals, one while riding my motorcycle (into the back of a truck). Thank God the truck was there because the light ahead was red and drifting into oncoming traffic would not have been good. Then, losing driving capabilities until drugs were proven. Losing high paying job.
More seizures, waking up in hospital not knowing who or where you are, but gradually the fog lifts and you see how difficult it is to talk with your tongue half chewed to bits. Then the embarrassment of realizing you have shit your pants like a two year old being weaned off of diapers. Finally having to take drugs all day long and not liking it, but at the same time, realizing how critical this compliance is even though you no longer have health benefit insurance to cover these expensive drugs. Wow, what could be worse eh?
Well, as dismal as this sounds, it allows us epileptics to realize how much we can appreciate life, and while there are people who blissfully walk through life (often complaining about menial things), we “Epileps” know how valuable life is. Especially when we compare ourselves to the enormous tragedies taking place around the world. Children killed for no reason!!!
So, all I can say is “strap in tight” and ride the ride we have to face. It’s not good, but it could be way way worse. We Epileptics have one advantage, we know what it is and how tough we can be to push through. And should we ever be near someone who is having a seizure, we are well prepared to stay and help them.
So this is a request to those with Epilepsy and all others to try and help us and those with other afflictions. Learn about what to do, to someone who is suffering alone, any help is critical.
Next week, I meet with the Governmental Transport Authority with medical records and Dr’s approvals in hand, hoping I can convince them that my current SUSPENSION is no longer valid, and if it continues will only lead to greater personal complications and problems. Sadly, I’m not sure they really care.
Stand up, fight hard and enjoy life while you can.
Weird… I’ve had over 30 grand male seizures. Started at 15 and IM 23 now and everyone I go into a grand mal there is just nothing. It’s black so I find this story odd. Before I black out I try to say help but just seconds later it’s just black. There’s no dreaming, nothing
Jess, Thank you very much for posting this. I was just informed (an hour ago) that my sister had had a grand mal seizure (at age 63) and since I knew nothing about them I checked the internet to find out what was going on and found your blog. With your post and all of the replies, I can now say that I am much less apprehensive. Once again, THANK YOU.
Thanks for this. I’ve been having serious flashbacks of my life. Not only the hard times but the good times. I just don’t where my head is at the moment and why I’m having so many memories flashing before my eyes.
My 23 yo daughter suffered repeated grand mall seizures from mioclonic epilepsy and now she doesn’t speak will she ever talk again or is this permanent
My husband 58 very good health had a Seizure this morning and refused to go to the hospital. All he timbers I that a bunch of strangers were in his bedroom and he was extremely angry and just wanted to go back to sleep. They left he has been sleeping and I check on him every few min to make sure he’s OK. Will he remember anything?
I was diagnosed with epilepsy in 2012! I have had three grand mal seizure s in that time. When my seizure’s have occurred i never remember anything that occurred. Any assistance i can receive from others that are in the same boat as me makes me a happy camper. I am diagnosed keppra 3000 mg daily and lamictal 100mg daily
hello i am 21 yrs boy.recently i was diagnosied with depression.in that condition i saw a frn of mine having grand mal attack.he suffer it from 7 yrs .i was very scared to see that and i search information about it on net and again very much scared to know about loss control on bowel .as it is too embarassing.please help me to get out of it.can it happen to me in this age and can i loss control on bowel.does grand mal show severe effect on first attack or it develope slowly plz help me.can bowel incontinence happen in first seizure attack.
I HAVE OVER-THE-TOP FEAR OF SEIZURES. I heard on Facebook someone had a seizure. I wanted to know what it felt like, so I read this story. I have never had a seizure before, and I had both a normal EEG and a normal MRI in 2010. I have still worried though, as I’ve read the rest of these comments. If I have a seizure, will I be “screaming in my head to get out if it? Will it be overwhelming panic? Will I feel just like you in that seizure?” I have had this fear for 3 months now. I keep getting told seizures are rare, but not impossible. I mean, I could have a brain tumor right now and not even know it! What can I do to help myself?
I know this is an old thread but I just came across it and found it to be the most similar experience to mine that I have read. I would like to share my first seizure experience as it seems to be very unique.
I won’t ever forget the feeling of my first seizure. Technically it was a neurocardiogenic sycople episode which presented as a grand mal seizure. It was without a doubt the scariest experience of my life. I had just driven from my parents’ house in upstate NY to my boyfriend’s house in NJ. We were just relaxing and hanging out in the kitchen. About thirty minutes after arriving, I got up to make something to eat because I realized I hadn’t eaten all day and was starving. While standing in front of the kitchen cabinet, gazing at the food options in front of me, everything suddenly turned technicolor. All at once, I wasn’t hungry anymore, I felt very nauseous. I remember thinking that I was about to pass out, but before I could say anything or warn anyone, I lost consciousness and everything went black. This feeling did not last long however. I immediately felt as though I regained consciousness even though on the outside it did not appear as such. It was at this moment I was aware of my convulsions, I couldn’t see or hear but I was aware of what was happening. It felt like I was driving and I suddenly went blind, but I was driving very fast and I couldn’t slow down or see anything in front of me. It was a feeling of paralyzing fear. I couldn’t remember where I was or what I was doing but I was just so scared that I was driving. I felt like I was moving very fast but had no control over anything. And then I began to hear what was happening around me and see flashes of blurred vision. I heard my boyfriend and his friend talking, and panicking, and calling 911. I knew they were scared, and so was I, but as hard as I tried, I could not communicate with them. I felt like I was screaming at the top of my lungs, but no sound was coming out. I felt trapped in my own body, I was conscious, I could see and hear, but I was paralyzed. I had no control over my body. I felt a terror that I cannot put into words. It was a gripping, inescapable terror like nothing I had ever experienced. Finally, after what felt like an eternity to me, I regained full consciousness and control over my body. I felt so weak, it took an enormous effort to move at all. My boyfriend carried me into his bedroom and laid me down on a towel on the bed. I remember asking why there was a towel and it was then I learned that I had also lost continence. I had no idea. I had no idea what had happened to me. I had no idea it was a seizure. I thought I passed out but I had no idea how to explain what I had just experienced.
I have had Grand Mal Seizures for the last 25 years do to a car accident I was in. They were going to do the surgery where the Epileptic Tissue in my brain would be removed. I found out it is all over my brain. So, I have no control ov er it except with meds I take for it. This last Grand-Mal Seizure was the worst I ever had. Here I am walking on the side walk then, I don’t wake up until I am in the hospital. I wasn’t even awake in the ambulance meaning I was knocked out unconscious. I am ok now. I understand where they say “emergency services are never really necessary” Well, you see a person unconscious on the ground are you going to say “Oh, she will eventually wake up” If you feel that way you are heartless! I was lucky someone happen to be there to get me the “Emergency Services” I needed! Any injury to the brain is an emergency situation! Don’t treat it like a scraped knee. Study all you can about! Then, you will know what to do!
Everyone has their different happenings with this particular seizure. I never view it as a non-emergency situation. Any type of condition is that deals with the brain is an emergency no matter how you look at it! Can the human body function without a brain? No! Can a car function without a transmission? No! We need both! My condition is very severe. I have taken all the meds, had all the op’s. What more can I do? I take my meds to control them! Epilepsy is a serious disease. I can’t drive and I can’t work. It is against the law for an epileptic to work anywhere that could endanger their lives as the lives of others. So what do I do? I am labeled “Disabled” I had a career. Well, not anymore. Next time you think epilepsy is not life altering, THINK AGAIN!
Jess, thank you for posting your experience. One of the hardest parts is not being able to explain exactly what I’m going through at the time of a seizure. It was great reading others’ stories as well because it shows just how unique, yet similar, our situations are. It’s always going to be difficult for me to accept my illness, but I know for sure it has made me stronger and more appreciative. Especially knowing that I could have died in several circumstances. One thing I need to know — does anyone else have constant deja vu?? At least once daily I stop dead in my tracks because of an over-welmingly familiar feeling that seems like I’ve dreamt this before. Anyone???
i have been diagnosed with tonic clonic epilepsy, since I was 13 or 14 and Im now 45. I don’t have an aura, so, I don’t know when they are coming on. If I twitch or my eyebrows go together (and I cant stop it) I usually take an Ativan, to slow down the brain activity, then I don’t have a seizure. I have been blessed because I haven’t had a seizure in 7 1/2-8yrs now-but a had a couple break through seizures during that time, each time it was because I missed a dose of my meds. Im now taking the generic brand of the medicine Lamictal. Dr said it was supposed to work in conjuction at the same time with another med, but im doing good by itself. I was told at the Cleveland Clinic(Im sure some of you have heard of that, in Cleveland, Ohio) that I could not have the surgery to remove the area it was had the epilepsy because the epilepsy was all through my brain, not just one area!!!!!! I still get upset about that!! I would gladly get rid of this disorder!!!! I hope surgery goes well!!!!
I am a 54 year old female who was diagnosed with partial complex seizures,
But recently I just started having grand Mal seizures. Any reason why the change after 20 years?
All the best to you and your family. Thank god for being on your side
Thank u for sharing I know sometimes out easy I have grid mal seizures and I had one a week ago and i remember my doctor telling me im lucky to be quite live all I remember was being unconscious then waking up in a ambulance with foam and puke all over me
I was actually looking for an article that said what gran mal seizures actually felt like.
I guess you actually hit the nail on the head unlike everyone else. I’ve had around 15 in the last 5 years now, and I’m starting to have them every month, so I know what I’m talking about.
I have been having seizures for 19 years and only my husband believes i can remember and describe some of my episodes. A little here and there.
Thank you for sharing. Just saw it today. I’m an epileptic. I didn’t know that’s how i feel while having one.
Thank you for sharing. I’m an epileptic.
Thank you so much for posting this, it helps me a lot actually. My best friend just got diagnosed with epilepsy about three weeks ago, and sometime last week had a grand mal seizure. I’m glad you posted this so I know what it’s like and how it looks so I can help her if something happens when I with her. Thank you so much. 🙂
Coming around to Paramedics standing over you, and a pissy shit filled diaper is always interesting. It is no fun for me, but the way the medics react to a 28 year old with a messy nappy is always unique and therefore quite interesting.
I have had paramedics standing over me complaining about my incontinence and I have had paramedics who have changed me on the spot. Either way, whether they are nice about it or mean about it, it always embarises the hell out of me especially when one of them changes me into a clean pad.
Most of the time my Seizures last around 20 minutes, I have 3 or 4 at a time and people get scared because they don’t understand what cluster seizures are, so they call the ambulance.
Nearly all the time I do not need to go to hospital, so having a seizure ruins my day and often the following day.
For me I have no warning that a seizure is about to start, it just happens, then I come around with a headache, slight memory loss and confusion.
In situations were I have not had paramedics standing over me after a seizure, I am usually trying to figure out were I am and what happened for at least an hour before I gain my sense of self awareness back that I think is just as scary (if not more) as having a seizure itself.
During a seizure I feel pretty much like an infant, I am unable to control any part of my body, I am shaking, soiling myself, drooling, and not able to do a thing about it.
During that hour after a seizure I still feel pretty much like a an infant because I am unable to change myself during that period and unable to do anything as I am unable to remember how or what to do or were to do it, or even when to do it.
Not pleasant is how a seizure feels !
Thank you for sharing your experience.. I have been epileptic for 22 yrs and they have never been able to find out why I have them. I was 14 weeks pregnant when I had my very first grand mal seizure and it happened in my sleep. When I do have grand mal seizures they happen so fast that I do not remember when they start or how long that they last. I do have my own way of letting those around me know that I am having a seizure by making some sort of scream or I hit the wall or whatever I am around. I do continue to have seizures of all types and they are controlled by medication and a vagal nerve simulator which is similar to a pacemaker but it goes to my brain. And the combination of both the medications and vagal nerve stimulator is what has worked for controlling my seizures.
I am 56 and became epileptic ‘out of the blue’ for no reason, including genetics, during 1986 at age 25.I have grand mal seizures, but usually only 3 or 4 a year.I use phyntoin, generic of dilantin, and it does well for me.I’ve been told I sorta scream at the start, then get stiff and then convulse.When I come out of it I am confused and have to remember my day.Sometimes I bite my tongue, other times I don’t.I have a scar on my tongue from old bites.My husband grips my jaw if I have a seizure while he’s home…it prevents me from biting my tongue.I am totally unaware of the seizure from the scream until it’s all over and I’m coming around.I never had a seizure in public, but I heard of a woman who did in a grocery store in the checkout line and knocked over the gum and candy bar rack.