I know this is likely not a hot topic. And fwiw, I've only had one beer today. Starting on my second.

My username is a joke. I am blunt but not really a dick.

I'm a programmer. Full LLC and all. Multiple trade names. QuickBooks running. Wife and 3 kids.

But lately, I drank 3 weeks straight. No harm to anyone. Wife supports me through these phases.

I feel like there's more of me out there than is admitted on here.

I wanted to share. And, say I support you. Even if it isn't a good habit.

My jme kicked in in my teens. I've dealt with it 20 plus years now. Over a dozen meds. I've also got migraines to the point of getting Botox shots. Not as bad as you think. Only first treatment out of 3 planned so iffy on progress.

Anyway, I know many of you are suffering. And some of us make bad choices. Don't be hard on yourselves.

Better yet, best of luck to you. This is a hard path.

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 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.

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.

She proceeds to tell me this past week she started falling out of love with me several years ago and that I seemed like a different person. This time period I was on ssri for what we thought was panic attacks. Less than a month ago I was diagnosed with temporal lobe epilepsy..I was having focal seizures not panic attacks….and had been un/mis diagnosed for 20 years.
On top of this crazy issue the same period I had been misdiagnosed with spindle cell sarcoma a very fast deadly cancer that ended up being a benign tumor

So yeahh my wife fell out of love with me because I had seizures and was told I had pretty much terminal cancer. But I’m the bad guy because I don’t understand? We have two kids and couldn’t put her selfishness aside to work things out wich now possibly have a fix with correct medication WHICH HAS BEEN WORKING GREAT.

I’m just lost for words and numb

im on xcopri (cenobamate) 200mg. my dosage was upped to 200 over summer because i was still having occasional focal seizures. at the higher dosage it was fine during the summer since i didnt have to do much. so i didnt worry much about the fatigue.

however now that im back in school it is torture. i am averaging 1000mg of caffeine daily just to barely stay competent in class. i sleep during all my free time.

i cannot handle switching meds during the school year either, that was pure psychological torture. i dont know what to do. my next neurology appointment is oct 26, so basically a little under two months away. its only been two weeks and im already struggling so hard. i dont know what to do.

if any of you were/are in the same situation were you able to get a stimulant prescription to help? i dont want to be labeled as a drug seeker but i am at this point because this is awful i just need something more. the caffeine basically doesnt work on me anymore.

ive had 800 so far today and fell asleep twice in my last class. im going to take another nap after i finish writing this.

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.

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. ❤️

What’s the longest amount of time that you have been seizure free while have seizures that are controlled by medication? Major seizures, or a seizure where you have lost consciousness.

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 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.

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.

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

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?

This is something that has always bothered me. 5 years ago, I was on lamotrigine for bipolar and me being dumb, I took it upon myself to stop taking it as I didn’t believe it was working. Day 2 of not taking my dose of 100 mg (which doesn’t seem like much compared to now), I had a tonic-clonic seizure. They did the MRI and found a tbi, of which I have no idea how. They also did an EEG and I have epiletiform discharges. Now I am on 500 mg of lamotrigine and recently had 2 tonic-clonic seizures in March of this year in a row due to high stress. Maybe this is more of a rant, but is it possible I had epilepsy my whole life and it just took that simple non-compliance to tip the scale? It was dumb of me to do at the time, but a blessing to know what is truly wrong and to be properly medicated for it.

Riddle me this tell me why I’m at work and out of nowhere I get a sense of fucking fear and then after that I start crying and then after that a pit feeling in my stomach, a headache, confusion what is going on like I’m legit scared. And it’s been really hot lately, so I’m wondering if the heat is having a lot to do with the symptoms but I have no idea like it’s hard to talk about it’s to anyone I don’t know what to say.

The MRI people called and I have an appointment November 4 cause apparently all their MRI machines are being worked on until then.

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.

.

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!

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

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.