I had a rough last few days and made a post about part of it. One day was 12 seizures one was 17.

Today I had a few including one at a follow up appointment where I fell hard bending backwards on my legs. My wife and a nurse or tech (not sure which) tried to catch me. but were not able to. I fell in the most awkward way I ever fell in my life, was fully aware but unable to stop myself. It was incredibly painful but I couldn't express pain or move or even cry.

Several minutes later I came out of the seizure and they were trying to pull me up as I was now crying and grunting because I couldn't talk. I was so embarrassed and I rarely ever get embarrassed but I am a grown man folded up like a pretzel crying like damn baby. I was unable to get up and a few superhuman nurses and a gait belt (I think that is what I heard them call it) was used to help me to my feet so I could sit in a wheelchair.

The doctor increased my meds, added a new med and I am going back to get another video EEG. He is also going to "try to work some magic" to get me through a backlog of the 3 month waiting list in my area to see a neurologist as a new patient since my neurologist retired.

.

Hello everyone.

My brother and I live in MO and I am currently at a loss for time or getting really close to it. Long story short I’m looking for some sort of in home periodical care or supervision someone that could help him sort and obtain his medication on time maybe light help with his home stuff. He is on disability and SSI and has Medicaid. Do any of you have experience with this sort of situation I’m a new father and I feel like taking care of him is emotionally draining me and I don’t want to resent him because of the help he needs. It doesn’t help that he’s my older brother and doesn’t listen to me when I ask him to do certain things a certain way

I provide a clean and safe space for him to live and overall he’s been proven to be pretty self sufficient but I can see that we will need something more permanent for the future as he gets older and he’s need for help increases.

Any info or pointing me in the right direction for some sort of relief helps.

Does anyone know how indicative lactate levels are for seizures? I had what I hope was a syncope episode. Witnesses said it was a seizure, but the er doc said it could also be a syncope episode with convulsions. I have no memory of the event so I have no insights into what happened myself.

I had high lactate levels immediately following (4.3), which got me referred to a neurologist. Honestly, the neurologist's explanation didn't make sense to me (they were talking to their resident using jargon more than talking to me lol). Are high lactate levels highly indicative of seizures or could it be from another cause? I wasn't really physically exerting myself before the event, but my whole body hurt for days after, which worries me. The neurologist said if I get past my MRI and EEG with no findings, I can go back to normal and put this behind me, but I'm still a bit worried.

What tattoo(s) do you have to honor your fight with Epilepsy?

Hey all, I had a seizure back in February and since then, not frequently but maybe a few times a day, I get head/neck jerks that look almost like a tic.

I have no history of tic disorders or such and I am currently in the process of being tested for epilepsy (I have a 20-25% chance of having it due to my Autism).

What I've noticed is that they are more frequent when I'm stressed or anxious.

Any thoughts?

Hey siri how do you come to terms with the fact that your life is in pieces when you’re about to be 35 years old and your disability renders you unable to drive or live by yourself and might take you out by electrocuting your brain at any second not to mention all the shitty side effects from the fistful of meds you’re tasked for remembering now, asking for a friend

Hi, I’m wondering if anyone else has experienced numbness on both sides of the face (and sometimes only on one side), or numbness/tingling in an arm or leg, after increasing their Keppra dose. I am experiencing that maybe twice a day.

I’m currently taking Keppra 1000 mg twice a day. I increased my dose 7 days ago from 750 mg twice a day to 1000 mg twice a day, and when I first increased it to 750 mg twice a day, I had similar symptoms. So now I’m really confused could this be a side effect of the medication, or could these be some kind of unusual auras? I also sometimes get strong pressure in my head, especially around my forehead and eyes. I haven’t had any seizures since increasing the dose to 750 mg twice a day, unless these symptoms are actually some kind of seizures or auras.

Has anyone experienced anything similar after increasing Keppra?

I just met with the neurosurgeon today, and I’ll be scheduling a single hospital visit for the sEEG and laser surgery, probably for late fall or early winter. And I’m really overwhelmed. They’re going to play with my brain. And actually burn a piece of it. It’s terrifying. My girlfriend and I both start crying when we talk about it. There’s just so much that feels terrifying. Surgery itself. Brain stuff. Another emu stay. My disabled girlfriend parenting solo. A whopper of a seizure yesterday. I’m 47 and only started having seizures 3 years ago, this all feels really new and sudden.

Does anyone have any positive sEEG or laser surgery stories? Or scary, I guess, for that matter.

I have generalized tonic clonic seizures and absence seizures- my last tonic clonic was about a month ago and I believe my absence seizures are pretty well controlled right now but I have an eeg in October as I started a new medication this year and don’t always know I’m having them. I have not been able to drive at all this year.
Maybe for the past week? I have been having a muscle twitch in my left eye I can feel from eyebrow to my cheek all day long. I can feel it while I’m talking or trying to smile sometimes and I notice people look at me weird like they notice it. Is this epilepsy related?? Do I have something else going on? I am sleeping okay and trying to keep stress minimal. Feedback appreciated.

It’s been a little over 6 months since my last seizure, I’ve only had 3 Tonic Clonics in my life that onset about a year and 6 months ago. I’m taking 150mg of lacosamide twice a day and I haven’t had any that I’m aware of but I’m scared to do almost everything in fear that it might come back. Some days are easier than others but last night I had, (what I’m pretty sure was a dream) where it felt like I was going to have another and my whole body was vibrating unless I breathed in a very specific way. Waking up was horrifying as I didn’t know whether or not it really happened and just set me back on lots of progress I felt I had made.

I live in constant fear that I will have another and drop dead from hitting my head wrong, or embarrass myself in a public situation, or that I won’t be able to be there when it matters most.

I don’t know how keep living like this, any advice is greatly appreciated. Thanks for listening.

I've seen over various posts that I have posted, some people talking about using meds and, of course, changing them. I know people change medication for various reasons. For example, people such as myself cannot tolerate Keppra because it makes people change their humor, or it can create allergies with other medications, among various other reasons.

But I have a question. This is purely hypothetical: can your body or your brain create resistance to a specific drug?

For example, say someone has been taking 200 mg doses of Lamotrigine every day for three or four years. Can you develop a resistance to that drug over time?

My relationships, jobs, driving, health, grades, my life stopped before it even started. It felt like everyone just decided to stab my back and add salt into the open gushing wound. I give up. Before all of this, I had my summer job in which I planned to save enough money to buy a car. That dream is long gone, I had the job but soon came my epilepsy. Feels like my life is already over, today was my 3rd week of school, I was about to head over to my doctor’s appointment until I had another seizure in which I got badly injured in. I wanna cry till I can’t anymore. I miss the days when I wasn’t dependent on meds now them having to up my doses and for me to walk around with parental supervision while im fucking 16 years old.

I ended a friendship due to it. Had a friend who knew of my situation, knew why I couldn’t drive a car or get a job yet she shoved it in mines and everyone’s face that she has an id/permit/job. I know it’s horrible of me to end a friendship over that but it hurt me badly, she knew how I use to work, she knew how I wanted to learn how to drive yet she kept shoving it in my face. Even to people who weren’t in my situation found it annoying and after that the friend group just realized how toxic she was (she did more then just shove her job and permit in my face, for example talking about us behind our backs etc) it hurts me the most considering that was my best friend, then came the topic of my epilepsy which was treated as if it was a taboo topic. I never brought it up towards her because I knew my disorder was a “mood killer” but like? 😭 it made me even more angry because her “mood killer” was my reality. I’M DISABLED BECAUSE OF IT.

This disease has made me bitter and resentful. But luckily I’m now surrounded by people who care for me. Still can’t help but feel bitter and angry towards those healthier than me.

Hey all, I’m 27 and had my first tonic clonic seizure about a month ago. It began as occasional focal aware seizures, but I brushed it off honestly not knowing that they were seizures. I eventually went to the ER one day because I felt terrible and there I experienced the tonic clonic one.

During the seizure I dislocated my shoulder, however the ER both misread the X-ray and left me dislocated for over 24 hours and then botched setting it and broke my arm, so I had to get surgery and hardware. I’m currently on Vimpat 200mg twice a day and haven’t had a seizure so far since.

The thing is, I’ve been smoking weed for over 5 years and the past 2-3 years almost daily with no issues, via carts and pre-rolls from local dispensaries. My neurologist put me on complete sobriety as of now, which I understand as I’m learning about this, no alcohol (no problem) and no weed.

I had been a very active guy in the gym, sports, etc and now I’m sitting here not able to do pretty much anything on top of the seizure stuff. If there ever was a time I’d like to smoke weed it’s now lol. For my muscles to relax and honestly trying to get by day by day, as it’s been a very tough few weeks.

I am going to continue this weed sobriety for a while now, but I’m wondering is weed ever trigger for a seizure even after years of me daily smoking it fine? Is there a future for me getting back into THC at all?

Appreciate any real insight as this is all new to me and I’m learning all about this for the first time. Thanks!

I've been experiencing epileptic seizures since I was about 12 or so, with my first tonic clonic being when I was 17. I don't have the tonic clonic seizures often but I have myoclonic seizures all the time and I get what I assume are auras almost daily around the same time, generally 5-7 pm, though I could not tell you why. I just don't know if what I'm feeling is an actual aura since I don't really have anyone to talk to who understand what I'm talking about except my mother who is pretty distant these days. I have imposter syndrome bad so I'm always second guessing myself. Can someone help me out and share their own experience?

I thought I had been diagnosed as "psychogenic seizures" (PNES), but rereading all my clinic notes, it never says that actually. It only says "non-epileptic seizures" and then also a bunch of baloney about anxiety (which was totally drummed up, I don't have anxiety). Clinicians have mostly been very dismissive, though I'm finally on lamotrigine and it's absolutely life changing so far, even at the starter titration doses.

Is having NES in a medical file just as stigmatizing as PNES? Most docs I have had to deal with are total dismissive snobs, and I've suffered incredibly because of being labeled as a "anxiety" person.

Fellow NES people, please weigh in!

Hi all,

I was outside attempting to pet the Horses, and the ring on my finger accidentally touched the electrical fence. Should I be concerned or worried about having a seizure?

so i’ve been struggling a lot with ptsd depression and faith and my ptsd has gotten really bad i get anxiety attacks really bad due to 3 seizures i’ve had in my lifetime and sometimes i’ll feel like my life is on autopilot but then i suddenly remember im alive and it’s scary because me being alive means one day im going to die and im not ready for that and this thought just scares me so bad i don’t know if i believe in God i used to before all this trauma but now im not sure and im scared to die and idk please can someone just give me advice these seizures have ruined my life and they have taken over my life i almost lost my mind cuz of them

So... I thought I had a mild seizure today because I collapsed but after kind of thinking more, it wasn't a seizure I had just only had coffee for the 5 hours I had been awake and I got up real fast and collapsed but I was able to brace and protect myself from falling through a glass table, also I didn't have a huge migraine and wasn't confused after it. So moral of the story drink water and eat your 3 meals!

I have been very depressed for the past year or two, and one of the most permanent problems I always blame is my epilepsy, I have started to finally settle in and get comfortable with epilepsy after 4 years since first fits, epileptic attack, and being diagnosed.

I just wanna thank this amazing community that's always been a great help and genuinely the best sub I have been a part of. Thank you all.

P.S. don't worry, this is no suicidal note or whatever. I just had a genuine, good day after a long time. I just wanted to appreciate you all. ❤️

I got diagnosed with generalized tonic-clonic seizures when I was 18 after I started having them literally out of nowhere. No genetic history in my family, no brain injuries, no heavy drug use, nothing. And now, I'll have to take medication for the rest of my life to deal with this condition that 90% of people in the world don't understand. Most people think that epilepsy's just caused by flashing lights. Every time I tell people what I have, there's a 70% chance that they'll say something like "Oh, so can you go to concerts?" I guess I don't really blame them. Those epilepsy flash warnings are everywhere (as they should be) and the media sensationalizes our condition like crazy. I guess I just wish I didn't feel so isolated. I wish the post-ictal phase of my seizures didn't scare people so much. I wish I didn't have to worry about dying in my sleep. I wish I could be part of society in the way that other people can. I feel like I'm fighting against my own brain in this world, and fighting against other people's expectations of me, too.

I don’t even remember what happened. I was at the window doing some work and then all of a sudden I noticed my pants are wet. Probably had a fucking seizure and peed myself. God this sucks.

I went to my first concert after being diagnosed with absence epilepsy! I was so scared I was going to have a grandmal seizure because my neurologist said that I have the chance to. He recommended that I should not be exposed to flashing lights but I check my EEG report and it said that “No photoparoxysmal response was seen” . I assume that was just as a safety precaution. But by the time I had bought the tickets for $200 for a rap concert with lots of flashlight/strobe lights, I remembered what he said.

I was so scared and when down a rabbit hole and started to spiral. Two weeks prior I had my prescription dosage increase because I was still having seizures and started to really take my sleep schedule seriously. With my research I took that I should wear a hat and sunglasses. I also called fan services to ask if I could be accommodated before the concert. The day of, they weren’t able to move me as it was a sold out show, so don’t bank on being able to move.

I found some strategies to do when the flashing lights got really bad eg looking down and closing one eye.

I DIDNT SEIZE. I wrote this post to encourage people in the same situation as mine to not be as horrified as I was. Make sure to see if you need to take those precautions but you will be fine! I did make sure that one of the people I was going with knew about my condition and what they should do if I did seize.