Generalized tonic–clonic seizure Puns

For those of you who have had been diagnosed with generalized tonic-clinic seizures....

What happened after your first seizure?

• Did you go to the hospital? If you did, were you admitted? How long was your stay?
• What tests were initially done? Was it just an EEG or did you have imaging studies done as well?

When I had my first seizure, I went to the ER, I had a CT, an EEG, and an MRI.... AND I spent 4 days in the hospital. Yet....I have heard about several other people's experiences --and they say they went to the hospital and then were simply given a referral to a neuro and sent home.

I would love to know what dictates the different ways a first seizure is addressed.

URL: https://avesis.cumhuriyet.edu.tr/yayin/e96d06bd-d695-45ab-9092-8486de3c3518/muscle-enzymes-blood-gases-and-quantitative-eeg-in-differential-diagnosis-of-generalized-tonic-clonic-seizures-and-conversive-non-epileptic-seizures

ISSN: 09419500

So this just happened to my daughter.

We got her diagnoses when she was 9 after an EEG. Generalized Epilepsy with tonic clonic seizures and photo sensitivity. After two years of med management we thought we finally found the one to work. Lomotragine. So she's on her final week of tapering off get topiramate and going solely on lomotragine.

Things were going pretty good until this morning. She got up like normal, I gave her her meds (150mg lomotragine and 50mg topiramate) because her auras are so strong in the morning she struggles taking them by herself. I dug out some clean clothes for her and put them on the bed next to her. She said good morning and asked about some plans we had for the day. I answered her and then went to my room so she had some privacy to get dressed.

Two minutes later I hear a strange sound in my living room, kinda muffled. I ran out to find her face down on our floor with her head stuffed in a baby bag screaming "I DONT WANT TO DIE,". and sobbing uncontrollably. Her eyes are shut, I asked her to open them and they were crossed. She shut them right away. All during this she's still sobbing. After about 10 minutes she calms down enough to relay what happened.

She said she heard a voice tell her "she's gonna die." I asked her if it was a high voice or low voice. She said low. I asked if she heard it in her head or in the room. She said room. She doesn't remember ending up on the floor and she said she could hear myself and her father talking to her every now and then but could only see black like she sees with a tonic clonic.

This isn't the first time this has happened either. I wasn't present for the episodes at school. In face I wasn't made aware of it until CPS came knocking at my door in March because she was found in the tubes on the playground in the same condition again Except instead of a voice she said she'd seen my husband punch me repeatedly in the face and stomach and that I was six months pregnant. The CPS case was closed fairly quickly when it was obvious I didn't have the two black eyes that she said I did, nor was the baby in my tummy killed or injured in anyway.

I brought up the cps incident to her nuero at the time, wondering if perhaps it was the lomotragine and topiramate interacting poorly with each other. (At that point in time we were working up to the max dose of lomotragine). He was very confident that the pills don't cause hallucinations and that perhaps she wa

Morning everybody.

So I'm going through the motions of figuring this out. Currently taking keppra and lamotrigine. I have a fairly active lifestyle (Realtor so driving is necessary).

My question to everybody on here, after receiving your diagnosis and going on meds, have you been able to go back to a normal lifestyle or has your diagnosis completely changed everything?

I'd like to get back on the road but I'm terrified of the possible consequences if I were to have another seizure. I definitely don't want to hurt anybody but everything has been controlled since I've tweaked my diet and got on the right amount of meds.

Any experiences would be helpful! Very new to all of this!

A little back story, I've had epilepsy since 16, and have tried a lot of medication, I have also been approved for medicinal marihuana, recently I travelled to London, Ontario to the health sciences centre and stayed for 10 days with EEG nodes attached to my head. While there I had two seizures, both of which they were unable to come to a solid conclusion on, before a seizure I usually get auras or drones, and also suffer from some short term memory problems, difficulty reading, as well as difficulty forming words. If I had a video of me seizing I would post it but sadly I don't have one. So again AMA I'll be more then willing to help anyone with epilepsy or even just trying to find out some information on it. Also here is some proof of who I am.

http://i.imgur.com/3Dqkwus.jpg http://i.imgur.com/WXE6QdM.jpg http://i.imgur.com/NOZHfDt.jpg http://i.imgur.com/kAfAhOD.jpg

My son had 2 seizures, one at home then one at the hospital after being admitted. He was diagnosed with BECTS and sent home with Keppra. He is doing well today and I've read a lot of information online about this condition, but I would love to hear from people who have or had BECTS or parents with BECTS kids.

Just interested in seizure frequency and really just how life changes in this situation. We have no epilepsy in our family so this is all very new to us.

Thanks in advance!

I had my 3 tonic clonic about 4 or 3 years ago. My brothers and parents where huddled around me trying to help and everything just went black, I threw my arms, trying to reach for help but couldn't cos of the seizure and I tried screaming but again my throat was spasming and not working but I managed to cough the words out. This traumatized me for along while. And it's still a big arse fear.

I just want to know if this has happened to you guys as it has me.

(This is mostly out of curiosity but also not wanting to be alone in this experience)

I also get blur spots now

As the title said, I had a seizure while on a video work call. When I snapped out of it, my boss was the only one left on the call asking me if I was ok. He called emergency services to my address that came to check on me.

I felt so embarrassed and guilty for putting my coworkers through that. I know there's nothing to feel embarrassed about, but I just can't imagine what was going through everyone's heads in that moment. It's still very emotional for me just thinking about it. I just hate feeling like I'm going to be known as the "seizure guy" at work.

Wondering if anyone experienced anything similar and how they dealt with the awkwardness/shame/embarrassment that comes about from it.

Edit: I personally want to thank all of you for sharing your stories and experiences. It's been so relieving to read all your supportive sentiments. It truly means a lot.

My boyfriend (33 - Moderna x3) has an appointment with his new neurologist in an hour and when I asked him to ask the doctor about Covid he said “don’t be silly, Covid is a lung disease”. Everything I’ve read says it affects the neurological and circulatory systems. I’m not so worried about his epilepsy making a bout with Covid worse - I’m worried about having his frequency of seizures change for the worse if he got it. Hoping to hear from epileptics who have had Covid (or found articles about it) who can say whether or not catching it increased or decreased their frequency or severity of seizures. I hope I’m worrying needlessly but the thought of having his epilepsy get any worse has caused me to be extra careful. I’m worried about myself since I’m an ex-smoker but him having more than the 2 to 4 tonic clonics he has every year if he gets Covid would just be icing on the damn cake.

After reading many of the posts on this subreddit and seeing many of you talking about how long you’ve been seizure free, do any of you consider have a random absence seizure or two as still being seizure free? I’m curious because my seizures originally started as absence seizures back when I was 18 and then progressed to tonic clonics the last few years to where now I’m on medication (Keppra 1500mg and vimpat 250 mg) I’ve been tonic clonic free for 6 months now since starting these meds together. I do have absence seizures regularly though and I almost always know when I’m having them to the point where I try to snap myself out of it. I also get many auras a day. So because of this I don’t call myself seizure free and also I don’t feel like it’s normal to have as many auras as I do everyday, usually about 5 day but sometimes more.

Anyway I got off topic but what do you consider seizure free? Tonic clonic only or all forms of seizures?

I usually do this AMA every 6-10 months, since I'm hoping that these AMAs can function as both a way for me to track the progression of my epilepsy, and to help shed some light on some more severe forms of epilepsy. Also, a quick note; I'll only be answering QUESTIONS, not statements. Additionally, I'll ignore anything concerning any narcotics such as marijuana, methamphetamines, etc. Since I've done some AMAs on this before, I've gotten some common questions that I can answer already:

With the exception of the Tonic-Clonic seizure I had a few weeks ago, I'm not having full-blown seizures. The seizures I'm having are called subclinical seizures, which basically means they're small enough that someone else probably wouldn't notice unless they're really looking for the signs that I'm having one, such as if my cheeks are red (almost like I've been in the sun for a while) and I'm kind of blankly staring. They usually just come with mild lightheadedness and I sometimes stumble with words and blank out because I forget what I was saying.

Yes, I'm on medication for it. it's called Epidiolex, and it's the only FDA-approved drug that can use the CBD from cannabis (or marijuana, if you call it that). No, I do not get high on it. There's no THC in it to get high on. Yes, it can be expensive. It costed $2,400 a month, so it was incredibly difficult to get the insurance to cover it. Luckily, the insurance finally decided to cover it. And we're trying another medication for it, but I can't remember the name right now. I'll edit this if I can find it.

Concerning driving, Florida law states that a person must go for at least 2 years without a Tonic-Clonic seizure before being able to get their learner's permit or driver's license, which unfortunately means that I won't be able to apply for my learner's permit once I'm old enough. And even if I didn't have the Tonic-Clonic seizure, I have doubts on whether they'll allow me to get one, since I could be a risk on the road if I blank out during a seizure and I don't devote all of my attention to the 2-ton death machine I'm controlling.

Other than that, ask away, and I'll try to answer to my best ability!

Does any one know of a group that can help people with seizures find a "buddy,"someone they can text or call if they need some support, especially after a seizure? I have a friend who lives far from family and does not have a large circle of friends who (a) understand epilepsy and seizures and (b) can be with the person for support and help. I'm thinking a buddy might be very useful.

First of all, i am 56 years old and never had seizures before in my life. Now i have had 2 with a year in between. The last one a week ago with biting my tongue and peeing in my pants, and of course no recollection of anything until i woke up with people around me and an ambulance coming.

Got an Mri, EEG, blood tests and nothing was found. Also i cannot find similarities between the two seizures, one was in bed late and night and this one was in a restaurant around lunch time. The first time i sensed something was wrong with me for a few seconds before passing out, the second time i sensed nothing at all.

I'm now on 750mg of Kreppa per day which makes me sleepy but it's very doable. Of course the doctor said there are no guarantees and he has no clue about where my seizures come from. \

So only 2 seizures with a year in between and not knowing what to do, is it worth sticking with the meds for at least 2 years to see if they do anything at all ? Has anyone found a reason for seizures that the hospital have no clue about ? Sorry for the many questions, i have no clue and sadly the doc doesn't have a clue either. I do appreciate his honesty though. Thanks !

My two year old has had two tonic-clonic seizures within the last 7 weeks. Each time, she was sick about a week before the seizure, but she did not have a fever at the time. She also was very cranky and tired the day before each incident. She had an EEG (outpatient about 18 hours) about three weeks after the first seizure , which was normal. We are scheduled for an MRI and genetic testing, but the dr does not suspect anything serious underlying as she is developmentally normal and they did not notice anything on the physical exam. We have noticed that she also seems to stare or zone out at times, but snaps out of it when we call her name. My questions are

1. does anyone have experience with this type of scenario and how did it ultimately resolve?
2. do these symptoms seem indicative of a larger syndrome or disease?
3. do the staring spells seem linked to seizure activity or more likely us being paranoid parents ?

So my psychiatrist prescribed me Gabapentin for anxiety and I got up to a 600mg dose twice a day max. I know that’s not much but I don’t like the med so I decided to stop it. With the guidance of my psychiatrist I went from 1200mg/day - 600mg/day - 300mg/day now changing doses every week. I get nocturnal seizures maybe on average once every month and a half, still haven’t figured out why but I’m on Keppra for it. I just had a seizure after having one a week and a half ago, now I’m worried this might be withdrawal.

Before anyone says anything, I’ll check with my doctors asap, problem is that now it’s the weekend.

This self study is taking place by me on myself. I had 51 Tonic Clonic epileptic seizures last summer, and think it’s time to start learning more from myself.

I have had epilepsy for 27 years. During that time I went 5 years in a row seizure free. Oddly enough during that 5 years of freedom I had vary limited doctor appointments.. but that’s a different discussion.

This study will be conducted with the information recoded with a Garmin fenix 6s pro, i recently started using along with a journal.

On a side note I had a doctors appointment the other day and when they checked all my vitals I was checking them with what my fenix 6s was reading at the same moment. Everything matched up spot on.)

For people who have an aura before a tonic clonic, I’m wondering about the timing of them - is it like you have the aura and then the TC comes right then? Or is it a few minutes?

Hi everyone, partner is starting on lamotrigine for Tonic clonic nocturnal seizures. Has anyone found this to be effective for nocturnal seizures? His eeg came back clear, they never bothered to do a sleep test, they have just put him on this. I’m personally on lamotrigine for tonic clonic seizures but I went on it at a very young age and I don’t remember the side effects etc or how it effected me I just remember it stopping my tonic clonics

Has anyone else ever been conscious during a tonic clonic seizure?

Im 27 years old, been having partial seizures for around ten years and tonic clonics for around 8 years

Ive had around 30 Tonic clonics, in my life, most of the time i black out completely but ive been conscious to a certain extent during a few of them

I remember the first time it happened like it was yesterday, probably around 6 years

I blacked out, and came to at the top of my stair case with my body twisting, turning and convulsing violently, i was basically hyperventilating, breaths being pushed out of my lungs at a ridiculous speed, gasping for air over and over, my vision flailing around like i was drunk out of my mind

I could still try and voluntarily move my body, although the involuntary convulsions way overpowered this i tried getting up, grabbing onto the railing, the stairs to no avail,

This lasted around 2 min atleast, convulsing in excruating pain down my stairs to the front door, when it stopped i was basically hugging my shoe rack, it stopped instantly then i slammed my back on the floor in relief

I was crying like crazy for weeks just thinking about it, my eyes get watery if i just think about my seizures or epilepsy

If anyone can relate share your experience

Hi as the title says I have have recently been diagnosed, I now realise I have been having focal seizures all my life but didn't know what they were at the time.

I am looking for some sort or video to explain to my children (6 & 7) what epilepsy is and what to do I have have a seizure while I am with them.

I have been looking all over the Internet, and everytime I search anything to do with children and epilepsy it gives me videos about children with epilepsy, this is great but sadly of no use to me, could anybody help and point me in the right direction? Thanks in advance.

Hello fellow Redditors - any help/support would be SO appreciated. My Husband is newly diagnosed tonic-clonic seizures. He has had 4 total, a few months apart. These only have happened in the night (between 2-6am) and they are absolutely horrifying to jolt awake and witness.

My fear is that they would progress into daytime seizures as well, which would 100% change our way of live and traveling, working, etc. So I guess my question for the community would be, does anyone have 100% of seizures at night, and also, has anyone started out only having nocturnal, and had them progress to daytime?

Little background if needed- this started of the blue in mid 30s. EEG, MRI and sleep apnea test all looks totally normal and fine. No history in family, no concussions or brain damage.

Thank you so much- reading the posts have helped a lot so far.

Let me preface this by saying that my epilepsy is caused by a (now mostly removed) brain tumor, which they discovered after a sudden grand mal where I completely blanked out for 30 minutes before I woke up.

They put me on 500mg levetiracetam twice daily and ever since my seizures have been fully awake and aware. I can tell what twitches, what cramped, in what order, I can even speak until I feel my lungs close up. After the seizure I would lie there trapped in a body that I couldn't move yet.

When they upped my dose because my seizures inexplicably increased in frequency, I felt them too. Screaming from the pain caused by the cramping of all the muscles in your body before it FINALLY went numb.

They added lamotrigine and that was a relief. Instantly, before it was at working dose, my tonic cloncs were limited to just my right arm/torso and the pain was gone. But I am still fully aware. I can sort of tell time now too. This one felt like 2 minutes, that one felt longer, that sort of thing.

According to my neurologist, he has heard of people being able to concentrate better on levetiracetam but not to this ridiculous extent. Needless to say it left me quite traumatised. I also suspect the Keppra is why I can't sleep properly and wake up multiple times at night; because of insanely increased awareness or something. They tried to wean me off and it failed miserably. I just want to talk with someone that has somewhat been through the same because I feel lost and alone.

Edit: big hugs and lots of love to all of you. I am clearly not alone, which is both saddening and strengthening. You guys are amazing support.

so pretty much what the title says lol

also if so is there a better way to deal with it than struggling, like can i hold my breath and count to 10 or is that not a good idea

Hi! I have TLE and started having absence seizures a few years ago and was finally diagnosed and started taking Keppra 500MG BID in late May of this year. I hadn’t had any seizures since I started the medication, but I usually have clusters about once a month around my menstrual cycle, so I went one period without any seizures. I started my period a little early this month on the 21st. My 24th birthday was 7/22 and I went out like normal and drank, but drinking does not usually affect my seizures. On the 23rd, I had a cluster of maybe 11-12 of my normal seizures. On the 24th, I woke up and my ankles, hips, and shoulders/back muscles were sore and the sides of my tongue/insides of my cheeks were torn up. I wasn’t sure where I was (I had gone out of town with my boyfriend to celebrate my birthday) and had no memory of the last 4-5 days. I had told my boyfriend to go out with our friends without me that night because I was tired and just wanted to sleep off the original seizures so I could hangout with everyone the next day as I normally am able to, so he was not with me to experience whatever caused my injuries. I still have no memory of those days preceding this episode and am experiencing confusion at home (not knowing where my clothes go, not recognizing my library where I had been studying in those days, etc). Could this have been a nocturnal tonic clonic seizure? I am feeling better now, but in the days after this experience I was in a horrible headspace and I have not been able to connect with my epileptologist. Any insight would be greatly appreciated! Sorry for any rambling/confusion, still not back to 100% quite yet.

Is it common to vomit after a tonic clonic seizure? Or is it link to the type of epilpsey? Seem that most don't vomit.

I felt bad when my teenager daughter has a seizure in the public as cleaners need to clean up the whole mess.

I primarily have focal aware seizures, but a few times they have generalized into a TC. They are mostly tonic, with just a bit of twitching. I haven't read much about this, descriptions of TCs seem to focus on the convulsive phase. Does anyone else have this type of TC seizure--almost all in the rigid phase, with very little convulsion?

(I know that heart issues can present as seizure-like fainting with tonic or clonic elements. I've had a complete cardiac work up and was wearing a heart monitor during one of my TCs and during several focal seizures, and my heart function was normal though out, so arrythmia or other cardiac issues were ruled out as a possible cause of the TC presentation.)

I have been reading this sub for the last week and haven't had the guts to write down anything yet.

My fiancé (32m) had a tonic-clonic seizure in his sleep on the 15th of March that lasted about 5 minutes. I put him on his side and called the ambulance. By the time it arrived he was already sleeping but woke up confused as hell when he saw himself surrounded by paramedics (he told me he thought we were getting burgled). They took him to the hospital and did all kind of tests (EEG, CT Scan, X-Ray of his chest, MRI, Electro, ultrasound of his heart, etc.) Everything came back normal, so they said it could be a one off and not to worry about it.

Fast forward 10 days and on the night of the 25th of March he had another one, also in his sleep. Called the ambulance again, they did a quick electro and said he was okay and could go back to sleep, that he was probably epileptic and we would have to talk to a neurologist so they could put him on meds.

We managed to have a phone call with a neurologist 4 days after that put him on Zebinix (I think that's Aptiom in US and Canada) 800mg once a day, and we will meet him face to face next week.

So far he hasn't had another one but I have been dealing with a lot of anxiety since it happened the second time. I have been terrified to go to bed every night and I am not able to sleep as I keep watching his movements and his breathing. I really want to believe this medicine will work for him but the unknown is too scary. I have also been reading about SUDEP and it terrifies me.

I would love to read some positive stories about people that were able to have their tonic clonic nocturnal seizures controlled.

We are off work as well so he has been able to get a lot of sleep (he is quite chill and even though it scares him a little he has been dealing with it quite well - a lot better than me which makes me feel super guilty as I know I am not the one that was diagnosed). I am worried that when we get back to work it will affect him negatively. We normally go to bed at midnight and wake up at around 6.30/7 o'clock, would that be enough sleep?

Sorry for the long story, I feel bad as well because I know he's got it "better" than a lot of people. He doesn't have any other type of seizure during the day (no absences or auras or anything like that) and he's only had two tonic clonic ones in the space of three weeks, but the unknown terrifies me.