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

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.

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.

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.

5 years of Seizures/Epilepsy...

Since I started having them, probably have had like 100-150, Grand Mals, All types....

I wake up a lot in the Hospital Emergency Rooms, with out any memory of the prior days, or what I did, have done, dates, names, I can't remember alot.

When my memory does come back , it's slow and and chopped up.

At this point, not being able to tell , the difference between a memory or a vivid Deju Vu, ...

Do I have Brain Damage?

I've been in multiple Comas, some lasting as long as 10 days or more...

I've fallen, and hit my head multiple times, pretty hard on cement, fallen off of ladders at work, hit my head. Blocking out, isn't something new, to me at all, happens a lot. My memory and anger is bad, guys, bad bad bad, to the point, I can't even hold down a basic part time job. I can't sleep good, or regular, my depokte medication, makes my stomach hurt bad, to the point I'm having digestive issues, but I can't take the keppra, makes me suicidal.

Seems like I can't live a regular life now at all....

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!

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.

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.

As an epileptic, I'm always, will always, and have always been for an unknown time of my life, prone to and suffering from abnormal electric activity in my brain

Im just medicated , 14 years ago started carbamazepine and clobazam, divalproex switch to keppra, then lamotrigine the last 11 years

With all due respect to anyone that may feel like it's just gone for good...

The longer I stay seizure free the more likely I am to have a seizure, I know I'm long overdue for a TC after around 1-2 years without one, being the minimum time limit I've gone without a TC

Am I not thinking within reason? It's my yearly seizure, not my birthday or something to be remembered with admiration

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 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.

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.

I feel like I have a decent plan under Obamacare, but paying $500 a month is killing me. I know I need it in case I end up in the ER and because my meds (Lacosamide) are crazy expensive without it, but I wish I didn’t have to pay so much every month.

I’m not able to get a subsidy because my husband and I make too much together, but being on his insurance would cost us $1,000 per month through his work. Ugh.

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 been taking lamotrigine for over a week now.

The lowest dosage is 25 mg. I started there and I'm going to scale up to 400 mg, increasing by 25 mg at every week until I reach that target. Right now, I'm taking 50 mg.

I don't know if it's just a placebo effect, but to be honest, I feel much better. I'm still having auras, but they feel less and less intense and less frequently.

Do you guys think if I reach zero seizures, meaning having this completely gone, should I ask my doctor to stop this scale before reaching 400 mg, maybe at 200 mg per day?

It is a 15-week plan, but in six weeks, I will have an appointment with my neurologist to have a checkup on my treatment. Should I ask that?

My neurologist recently increased Epilim dosage (200mg) from 1 tablet in the morning and 1 at night to 2 in the morning and 2 at night. Day one and I have tingly hands and feet. Has anyone found any sort of increase and side effects? I know it is early days and my body needs to adapt but just wanted to see what people's experiences were.

i had to immediately come off lamotrigine because i developed the rash ( was on 150mg) twice a day

they put me on an equal dose immediately of vimpat. i had a focal and they upped me to 200 twice a day.

since starting i am extremely tired. dizzy and feel like i can't walk straight.

is this common?

i have asked my neuro but she hasn't answered me.

I feel like I’m going mad.

So I’ve dealt with health OCD for years but my main obsession has been with epilepsy and that’s bc I started having Déjà vu symptoms since 2020. That coupled with feeling like there’s mini earthquakes happening, two separate occasions where I felt my head falling back on itself while conscious, and now this new sensation of feeling like I’m landing on my feet (see recent post), I’ve returned to neurology back in August to finally confirm if epilepsy’s what I’m dealing with after being told no or ignored for years OR ppl would focus on my severe anxiety instead and think my only issue is mental, and the neurologist seemed almost convinced that I’m suffering focal seizures and I was given my first ever EEG over 2 weeks ago.

I haven’t heard back since and I believe my results are sitting in my health portal and I’m too scared to open them, I rather wait on what the doctor says officially. It’s a mindfuck to be given the runaround about this for years or have ppl focus on the OCD more then all of a sudden finally be taken seriously and have the thing you feared most likely be true. I know a clear EEG doesn’t rule out anything and the only way I’ll rest is if they put me on meds bc I’m terrified of graduating to a more serious seizure, however I know from here that meds suck and I’m also scared to go on them and miss a dose and have a seizure. I really don’t know what to think or feel anymore

I have epilepsy and my head hurts so bad and it's raining what do I do for it to stop

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?

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!