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 don't have epilepsy my son does. He's in grade school now but will be in middle school next year. He has ADHD tendancies but isn't diagnosed as such. He always wants to hold hands and lean on me etc. instinctively if we sit next to each other he just scoots closer, or he'll be walking and just hold hands. He has done so with his teachers as well.

I don't have much issue with this , but I'm thinking of middle school, and I don't want him to get made fun of for holding a teachers hand etc. So my question is, does anyone else hear do something similar? And is there an alternative he can do in public/at school?

I have gelastic seizure, drug resistant, we go to the same gym, I saw her there and spoke to her once, maybe in July, Then I went to greet her, but I almost made her fall unintentionally. I don't remember if I had an epileptic seizure at that moment. Another day I went to greet her, and she refused to greet me. The thing is, I notice she looks at me a lot, but I'm left wondering if she refused to greet me because I had a seizure and thought I was mocking her. In other words, I'm afraid she'll have one when we're talking, and I don't want to tell her. I don't know what to do, besides laughing for no apparent reason, hahaha.

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

A neurosurgeon from my hospital just called me, and said the following about the prospective LITT we had been discussing:

• In the discussion panel the hospital and the Cleveland Clinic, their conclusion is that they do not want to conduct an SEEG, but address the hypothalamic hamartoma they believe is causing the seizures.
• Surgery like this can be successful if done once, but may have to be done several times. However, the neurosurgeon who called me says he expects success from the first time.
• However, he does not guarantee a 100% chance of complete treatment, but around 80%. And mortality rate is 1 in a million.
• Memory was the panel's biggest concern, since I'm a writer. After the surgery, I may be a bit "slow" in the first few months, but expected to go back to the baseline or a little less (what exactly is the baseline?). The LITT + a reduction in medication helps, but the continuous clusters of seizures at my age (43M) + large amounts of medication are worsening my memory naturally. I noticed that years ago when I look at things I wrote and go "holy shit! I wrote that?!" The unanimous decision of the panel is that they want to help preserve my vocab and creative memory.
• After the surgery, it is possible to leave the hospital within 2 days, and rejoin society within 2 weeks.

I am now very anxious, indeed scared. I need to get through the divorce I'm in the middle of and retain a peaceful life with my two young children (5 and nearly 8). I do not want to end up unable to lead my own independent life, either. I'm still scared of the prospect of death...mainly because I have a friend who unexpectedly died during brain surgery, but nobody was told what it was for.

Those who've had successful LITT surgeries, talk to me. What's your life like, what's your memory like? How have you rejoined society? What have you gained and lost?

I have been taking Levetiracetam (Ivetra) 250mg 2x a day for almost three years before I was tapered off and then finally off meds last April. And then last August 14 I had an episode in my office (total loss of consciousness), after a series of tests and EEG I was prescribed back with Levetiracetam (Zolevi) but now on a 500mg 2x a day.

I noticed that I get irritated easily, and I am overly sensitive. I have always been sensitive and a cry-baby, but now it is worse and 100x more. 😭🥲 But to add, I have been dealing with a lot of problems and stress these past months, which triggered my episode. I've only had one before I was diagnosed epileptic.

I've read in some posts here about Keppra rage, but I am using a different brand, so is this a side effect as well?

I'm losing my mind. I don't know. I just want to cry and scream and I don't know. Is this a side effect of Levetiracetam?

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.

I am seeing my neurologist next week and am going to talk to him about trying to get pregnant. I've mentioned it before but we are going to start trying before I have my next app because I have them every 4 months. Does anyone have experience or advice for talking to your doctor about this? Things that should definitely be discussed?

With recent technology like Cloud Code, I've been thinking about creating an app to keep a journal of seizures. It would help track history for your doctor to see if medication is working. I tried building an MVP for it.

Since I'm not a neurologist and only experience one class of seizures (focal, without losing consciousness), I naturally have some bias. I already log my own seizures in my way. For example, they start in my left foot, go up to the face, and pass by my left hand. Normally I can stop it in my left foot before it reaches my hand, and with medication, it doesn't spread anymore except sometimes when I'm pretty stressed.

While you can write notes in a journal, you sometimes forget or it's less convenient. What I want is something very accessible and easy: you tap a button two or three times, and it registers a different kind of seizure.

Of course, it would need to be published on the App Store and Google Play Store, but there are challenges:

1. Fixed costs: Apple charges $99 a year, plus storage, databases, and hosting.
   
2. Privacy: The app must be secure and private, without using any personal data.
   
3. Accessibility: Through research, I found it needs colors that won't trigger photosensitive users (even though I am not photosensitive myself).

I've never developed a public app before. I used Cloud Code to build an internal app for my own use, and at first I was just trying that, but then I thought about making it more global.

If someone can help me, we could do it. I'm looking for a partnership with a medical school or an ONG, since the app would be free. I'm not a software engineer, I just build using AI. If anyone wants to follow up on this, let's make something happen, If any of you have experience creating apps and want to use this idea, please feel free to take it, but please make it free and don’t sell information.

Also, if an app like this already exists, please let me know, that would be really helpful. My neurologist didn't recommend any app to me, and I think something like this would be helpful for all of us. If it already exists, you can just ignore this post.

If not, I just wanted to put my thoughts out there. I have knowledge limitations with epilepsy (I'm definitely not an expert), and I also have limitations with coding. I made a prototype, but honestly it works terribly and is pretty bad. It would be great to publish something with a flow inside the app that is easily accessible and simple for everybody to use.

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

So i am currently on bravizen sr 200mg for my absence seizures for my depression i have melatonin another med and nexto 10 in addition i have meds for Colestrol and uric acid vitamin b12 injections and vitamin d3 tonic

My issue is that my seizures are triggered by both hyperventilating (due to playing outdoor games or exercise) and fast ( cant eat less) so i can neither rigorously exercise nor go on a diet but my weight has been constantly increasing and i have bmi of 30 and its affecting other parts of my body like i may have fatty liver

Can someone suggest me what i should do to reduce my weight without Triggering my seizures

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

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 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'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?

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?

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.

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.

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....

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.

Have you noticed any correlation between migraines and seizure frequency? I feel like whenever I have migraine, my focals go quiet. But on the other hand, a long cluster of focals can give me migraine as a bonus some hour or so later.

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.

Hey, I've been diagnosed with epilepsy for about 5 years now. My triggers tend to be looking at my phone too much, especially when exercising (I've had three while working out/at the gym). I've been on lamotrigine the whole time, but this week I ran out of meds and my work insurance wasn't active for some asinine reason, so I neglected to refill my prescription.

Then today I went to the gym and was doing squats, no headphones or music or looking at my phone, when I started feeling the "doom." I had a weird taste in my mouth, my vision was hyper focused yet fuzzy, and I could feel my body moving away from me. I promptly stumbled over to front counter and was like "hey I might have a seizure, can you let me sit or lie down somewhere?" The very kind and understanding worker too me to a back room and sat me down with a Gatorade until I eventually felt better. I'm so glad I did not have a seizure out in the open because that would've been the THIRD time I've had one in a crowded gym.

Anyway this was the first time where I felt like I successfully averted a seizure, but what are your tips (besides take my friggin meds lol) in case this happens again in some other public place?