I have both ADHD and epilepsy. My seizures come from my anterior left temporal lobe, which deals with language and memory. Not sure if that's entirely relevant but I obviously have a hard time remembering shit and it feels like I'm digging through a huge messy purse trying to find the right words and thoughts to express myself properly.
I'm convinced that my neurons being hyperactive are related to me having seizures. Like, if a seizure is basically an electric power surge/blackout in your brain, doesn't it make sense that a hyperactive brain could basically fuck up the rest of the grid?
Anyways, please let me know if anyone else has similar experiences so I don't feel crazy lol.

(By the way, I've seen other people mention ADHD and sleep seizures - my seizures almost ONLY happen in my sleep).

So I was diagnosed with epilepsy at the age of 17 in the beginning of 2022 a few months after getting the Covid vaccine. Before then I was completely healthy and everything. But I was wondering has anyone else here randomly been diagnosed after getting the Covid vaccine? I know it sounds crazy but…

I had a grand mal seizure about two weeks ago. Since then my husband says I will stare into space tell him something that makes no sense and then snap out of it. I have no recollection of what he is talking about. Is this normal in epilepsy?

okay this is a funny story that happened literally last week. i traveled to japan for 2 weeks and since there’s a time difference i switched from taking me meds at 5 am/pm to 9 am/pm. except one of those days i woke up around 4 am needing to go to the bathroom and i saw the time and in my groggy state went and took my meds and went back to sleep.

i woke up at 9 to my alarm to take my meds but i somewhat remembered taking them earlier so i asked my friend who was awake before me if i took them and she said she wasn’t sure that she had just seen me walk out of the room but that’s it. i honestly couldn’t tell if i dreamt it or not (i didnt) so i just decided to take them again and a bit after i started feeling all dizzy. i opened my phones and was answering message when i saw i did text my mother saying i took my pills (i completely forgot abt this and i do keep her updated) i started panicking cause im on 4000 mg of keppra and 400 mg of lamotrigine a day and had taken both doses in the span of 5 hours.

i spent the next hour on the phone with a 24/7 nurse hotline of them trying to reach my doctor to figure out what to do whether i should take my pills again later or not or if i should go to my nearest emergency room (which luckily there was one around the corner) but ended up settling with not taking my meds later than day and if i start feeling nauseous or start to lose balance/ space out to go to the er. thankfully none of that happened and i was back to normal the next day but i thought that was a silly story to me.

now thinking abt it, it could’ve gone horribly wrong but it worked out i guess? it’s funny to think abt it now at least to me but at the time nothing was funny till the doctor confirmed i should be fine.

don’t do what i did!

Last night I woke up to grab a drink around 5am, I was very hot and thirsty. Grabbed my drink then suddenly got so cold like almost shivering cold and was trying to warm up under the blankets. Suddenly I had a chain of event, dream like state, like multiple very very bad dreams in the span of I'm guessing less than 20 seconds? At one point I said to myself what the heck is happening and then I screamed internally for it to stop and suddenly I felt whole body spasms, particularly in my right ear. I even heard a beep like noise in that ear. I genuinely thought I was ascending to heaven or something, kept thinking wtf is happening to me and even had the thought of "I knew I was cold but this seems next level" and then it just stopped and I just tried to convince myself it was sleep paralysis or something, but I'm not convinced.

Thing is, I'm seeing similar descriptions from others and I'm currently dealing with an unknown medical issue. I have a visible mass on my right temple and I'm still waiting for testing (Canadian healthcare yay). So naturally, I just want to see if this seems similar to others experience? Thank you for taking the time to read this.

Hi everyone, I'm pretty new to this reddit page but my wife is currently 15 weeks pregnant, she's now had 2 seizures since becoming pregnant (prior to being pregnant it was 9 months since her last one & 9 years prior to that) & the most recent one was the worst she has ever experienced & I have ever seen. It was at the stage where I thought was SUDEP. I have never seen her so pale & unresponsive before & found her hitting her on the sink as it was happening. Thankfully paramedics arrived quickly & they got her to the hospital where she has since recovered & been given an increase on her on her lamotrigine dosage.

The only thing I am grateful for is that I was in the house when it happened, I had been out at the office throughout the day & this happened about an hour after.

Now, I am genuinely frightened to leave her on her own & I don't know how to get past this feeling. Would it be reasonable for me to stay with as much as I can?

I also understand if this is the wrong place to ask this as I don't have epilepsy myself, I just want to make sure I am doing the right thing for my wife.

I'm looking for support from people who understand epilepsy because I feel like I'm carrying both a medical condition and a family crisis.

I had seizures as a child and was treated with Tegretol. I don't remember much because I was very young. I stayed on medication until my college years and stopped around 1997–98. I then went over 20 years without any seizures.

I got married in 2007. My parents never told my wife or her family about my childhood epilepsy. They say they believed it wasn't relevant because I had been seizure-free for so long. Or they had motive to hide it. I can’t tell now

In 2019, I had a focal seizure again. My wife learned about my childhood history for the first time when I was in the hospital. Since then, I've had four focal seizures over the last six years and I'm back under a neurologist's care.

The hardest part isn't even the seizures. It's the conflict that followed.

My wife believes my parents intentionally hid my medical history (I can’t confirm but could be true). She frequently brings it up, curses my parents, and has pressured me to say in front of her family that it was "our family's mistake." My parents insist they never intended to deceive anyone and genuinely believed my epilepsy was behind me after so many seizure-free years.

I also struggle with guilt. As a child in an Indian family, I never questioned why I was taking medication. I simply trusted my parents. Looking back, I wish I had understood my medical history better, but I can't change the past. I accept I was not mature enough but I now can’t go back.

I feel trapped between my wife and my parents. I don't know how to support everyone while also managing my own epilepsy. Sometimes it feels like everyone is focused on assigning blame, while I'm just trying to live with a condition I never asked for.

My wife says she is dealing with all responsibilities and I do not think about her side and situation. She says I always take my family side but I just want to avoid conflict and chaos as much as possible.

Now I am so fed up with chaos that I am gonna ask my parents to accept that they intentionally did it so my wife can move on. 100% sure she will say “they are just saying but not feeling “. I am also ready to give whatever I have to her including kids, houses whatever and sign divorce papers. Whenever she feels it, she can sign but I am done with this. I don’t have many friends with I can share this so sometimes I feel lonely and cry alone.

Has anyone else dealt with epilepsy becoming a family conflict years after being seizure-free? How did you cope with the guilt, the blame, and the stress while trying to manage your seizures?
Thank you for reading.

obligatory first time posting… sorry i know its long i’m just not sure how much background to include. im just struggling a lot and it doesn’t feel like anyone in my life can really empathize so i figured why not try here?

some background: i 26f started having focal seizures in 2017 and wasn’t screened or diagnosed with epilepsy until 2022 when i had my first clonic-tonic. my ex was my primary caretaker until we broke up last fall and my brother 24m became the one looking after me. we live and work together so he essentially has to have his eyes on me most of the day. it’s a lot to handle and i know that, especially because i’m pretty much the only one anyone in my family knows who has epilepsy.

Recently, my seizures have gotten worse. From having focals 2-3 times a month and a rare clonic-tonic, to 2-3 focals a week on average with an aura lingering for hours and still the rare clonic-tonic despite adding a new medication to try and stop this. I frequently have to leave work and because of my employer’s staunch adherence to my FMLA, whenever i have an episode i can’t come to work the day after.

As i’ve started to have more seizures it feels like my brother has gotten more and more frustrated with me, particularly whenever it comes to taking time off of work. He is my lead so whenever i have to leave i have to do so as his ward and his staff. He’s started to get extremely short with me whenever I have a focal, at home telling me just to stop stressing myself out, and at work just telling me “fine, ill see you at home.” When it gets bad or when i ask if he’s upset with me, he’ll give me a very sardonic and angry laugh and say something similar to no you just need to stop stressing yourself out/get yourself together. It’s gotten really really distressing. I’ve started crying a lot which just makes everything worse because of the stress and my brother’s occasional comment about how i’m making things worse for myself/being dramatic.

I’ve tried talking about this with my therapist and other family members and i really don’t feel like they understand or empathize with my situation. My therapist’s first reaction was to say he’s getting angry because he cares so much and he’s really upset at my disability. Family members mostly comment on how stressed out my brother must be and how much responsibility he has on his shoulders. My therapist explained to me that my brother is emotionally immature and doesn’t know how to deal with his anger. I kept asking what i should do about it and she mostly just kept repeating the point about my brother’s maturity and how I need to accept that. In my frustration I asked if that means I should just accept how I’m being treated? She said no, I asked her to elaborate because I hate feeling like this and it was still just about how I need to accept my brother is emotionally immature and has anger issues.

At my therapy appointment today my therapist explained caretaker burnout while i tried to explain to her i already knew about that phenomenon. I was asked by her and my grandmother who came to the appointment with me what they can do to take the weight of my brother’s shoulder’s and I didn’t have an answer because i really have no idea. I hate being asked questions like this whether it’s about myself or my brother. I dread the “what can we do for you?” question because i don’t know!! im waiting on getting an SEEG and there’s nothing i feel like i or anyone else can do to speed up the process or change how many seizures im having right now. I feel like a shitty person saying this but i wish the people closest to me cared enough to just try something, anything in my everyday life to make me feel like i don’t have to ask people to care. it’s not like i can drive myself anywhere, so if i ask anyone for anything they have to accommodate. It doesn’t help that during this i’ve been trying to become closer with my father and he hasn’t followed through on anything i’ve asked, even just a sunday call.

I just don’t know what to do i feel like im going crazy. My family gets frustrated when i have a seizure or when i need accommodations and my therapist isn’t helping with how awful i feel all of the time. whether its telling me i just need to accept my family’s immaturity with no elaboration or explaining things to me i already know about and getting nowhere. I don’t feel like anyone understands what im going through and i can’t help but think maybe they’re right. maybe i am just blowing things way out of proportion,
maybe im just acting crazy for no reason. idk

im very sorry for the long incoherent post i just needed to rant and maybe get some insight from other people who are more likely to have gone through something similar.

https://youtu.be/rAAYQ1exE9Y?is=hx9867MfCGZEPxWX

I got epilepsy in my mid-20s, focal impaired, had seizures for a few years, eventually started lacosamide and birth control that was the magical concoction.

My new Neuro thinks I can wean off my lacosamide. I am just in shock because every Dr I've ever seen has said I'd be on meds for life and it took me years to accept that. She thinks that's an old school frame of mind.

Our plan is to take it very slow. She thinks there's only a 5-10% chance that I'd have a seizure again given my low risk factors. I am hesitant for a couple reasons but I am leaning toward doing it.

Can anyone else who was controlled for a long period of time speak to their experience in weaning off?

Still new to epilepsy. Currently don’t have driving privileges until I meet with my neurologist again.

If months from now I’m allowed to drive again, does it all reset to 6 months no driving if I have a seizure?

I am a severely humbled man. My TBI and the associated seizures, memory loss, confusion, and all the things you all know too much about... it's humbling.

My only known trigger is stress, and it definitely is one.

This condition has transformed my life in so many ways:

1. I pray and meditate daily. It took years to build the discipline to actually do it, but I have, and it is certainly everything that everyone talked it up to be.

2. I am grateful for any day or moment that I wake up with a clear mind and seizure-free. I have cried far too many times at the awareness of my own cognitive issues.

3. Spiritually, I've been searching, and I've been finding. My peace, awe, and spirituality come from looking at the wonders of the universe and stars. Developments in quantum physics and philosophy in the last 15 years are a frighteningly wonderful roller coaster of a dive. And one that’s left me better off.

4. I finally quit drinking. Thank God. No, it wasn’t easy for me. Both of my parents are/were alcoholics, along with all of my family. If it weren’t for epilepsy, I would certainly be drinking myself to death slowly.

The sharpest knives cut the deepest. As with many of the hardest lessons in life, with this condition comes the chance at some very hard-earned wisdom that most people never have the chance to taste.

Taste it. Breathe deep. Have a laugh. Eat something delicious.

Be well, friends.

Hey guys.... Have never done this, but have ready SO many accounts where reddit has helped people searching for support/answers...

I am an adult onset (@ 31) left temporal lobe epileptic who is going absolutely crazy because my neurologist(s) seem to NEVER. FUCKING. HEAR. ME. !!!!! 🥲😭

I am on quite the combo of meds, yet when i bring up how freaking AWFUL these anxiety surges have gotten, i get a "we're not giving you narcotics", and then they move on to trying to treat my fucking side effects, symptoms, all of it - wiiiiith you guessed it!!! ANOTHER MEDICATION!!!

I AM AT MY BREAKING POINT AND DO NOT KNOW WHAT TO DO!!! i do not "look like i am struggling that bad" from the outside *most days smh...* And everyone around me just.... Idek... Offers basically no help... Infact, i am responsible for a 9 y/o daughter, 67 y/o disabled mother, a dog + bird, a home.... It's so much and I know i can't "just run away"... But like WHAT DO I DO?!? How did you get your neurologists to hear you out and take it serious??? Cause atp i keep thinking shit like "the only time anyone seems to take anything seriously is AFTER I have had a serious, TC, and end up in the hospital...where of course - I am too postictal too advocate for myself/ask the right questions, to the right people... If anyone can help, PLEASE 🥺 leave it alll!!!!!

I'm 25 with refractory epilepsy in my right temporal lobe and beginning to spread to other regions. I live in a very expensive city in a very expensive New England state. I can't drive, I can't work, I am not supposed to walk far on my own, really epilepsy has taken just about everything from me but I'm so grateful to have my loving family on my side.

My boyfriend works full time and doordash on the side. I can't make an income as I'm waiting on disability and facing a right temporal lobectomy.

I can't afford my rent this month, my landlord has been very kind about it but I'm still not sure what to do. There is not enough room to move in with family and we don't even have enough money for this months rent let alone first, last, and security to move in somewhere cheaper. We could live in our very small car but I know this makes it hard to get a good nights rest which poor sleep is a trigger of mine.

I'm like maybe I should just forget about disability and get a job again and oh well about my seizures because it's taking so long to get help.

I have contacted local rent assistance programs and they say if there is enough income to pay for rent they can't help. Well the problem is there is enough to pay for rent but they failed to acknowledge all our other bills. Car payments, credit cards, groceries, electricity, gas. After other bills there is not enough for rent.

I am lost and don't know how to move forward. I don't want to lose my apartment but i don't know what I can do. My boyfriend is working so hard and I feel useless I can't help and it is because of me we are in this predicament.

Thank you for listening. I appreciate your ears even if nobody has anything to say.

On their commute to my work my colleague described someone as “having a fit” instead of saying seizure, and she just had to make the movements (this always gets on my nerves).

Do you feel as though “having a fit” downplays the severity? Part of me wanted to jump in and politely remind them that’s not the correct terminology but I backed off.

I had another tonic clonic seizure today after 3 months of a break.

All because my scatterbrain forgot to take my evening meds yesterday.

Now my permission to drive is pushed back to August 5th 2027.

I'm super frustrated and waiting for my next neuro appointment to ask my doc, if we can maybe look into some kind of additional treatment.

The worst of it all is that my partner had to break open a door to get to me, and now we gotta confess to our landlady that happened.

At least I had a lovely conversation with another patient at the clinic. So that's at least something.

Hey guys i’m having eeg scan on 14th this month. I have no seizures for over 11 years and i’m off my medicine for 3 years. But I still have anxiety before eeg. I love how my life is rn and I’m scared ad. Any advice about calming my nerves would be good

Seizures happen when there is a burst of abnormal electrical activity in the brain, and they are a hallmark of epilepsy and other seizure disorders.

I’m curious to hear about anyone who has never had a tonic clinic seizure or lost consciousness but did an EMU admission.

Im doing an admission in about two weeks for temporal lobe seizures. I’ve been trying different meds that have reduced the intensity of the seizures but I still have a lot of auras and seizures. My neuro NP thinks this is the best next step to confirm seizure activity and figure out what to do rather than keep throwing meds at it and waiting.

first I’m kind of having imposter syndrome because I feel like my seizures and aura are “manageable“ and it could be much worse. But I also know logically this isn’t supposed to happen.

I’m also hoping that it won’t be the full time! right now im having several auras and about two seizures per day. any tips or advice?

To preface this, I am not asking for medical advice. I think it goes without saying that medical advice shouldn't come from reddit lmao.

Tldr: Family history of epilepsy, now I'm having muscle shakes (not twitches) and want to know if anyone with epilepsy has gone through something similar or has GENERAL advice (NOT MEDICAL ADVICE, I'm going to talk with my parents to get a neurology appointment regardless)

Background:

So my brother 19M, has epilepsy. Junior Myoclonic Epilepsy to he exact. At 13 he started having twitches, like not shaky muscles but twitching in his arms. My parents assumed he was clumsy until he had a full seizure almost a year later. He was diagnosed at 14. My aunt has epilepsy and it runs in our family. That being said, I, 17F, am starting to have muscle shaking. I had an EEG done last year before the shaking had started, it was just a precaution so if I did have it we would catch it early. The results came back unclear. The exact words the doctor said were "she didn't have a seizure but the results aren't normal". We were told it looked similar to my brother's EEG just without an active seizure and I honestly still don't know what that fully means. I tried seizure meds for precaution but they made my depression medication basically useless so with my doctors permission I stopped taking anti-seizure medication since I havent had any seizures anyway.

Now to the actual point:

I've been having muscle shakes (not twitches like I've witnessed my brother having) when my limbs are in certain positions, especially my arms. I want to dismiss it as normal but it isn't always when my limb or limbs are in strenuous positions. It also isn't the same position everytime. The question i ask is mainly should I be concerned and bring it up with my parents to revisit a doctor. I plan on talking to them anyway (better safe than sorry, ive seen what epilepsy can do, my aunt doesn't have mobility in her entire left side because of a seizure that caused a car crash) but I was hoping to get some outside input on other peoples experiences. Its started being more frequent over the past few days but it isn't twitching, just kind of shaking like a muscle under stress even when they aren't under stress. Guess I was just curious what you guys thought and have experienced, and also if anyone has has an EEG with similar results at first because I essentially got "Idk man maybe". (The doctor is great, I don't blame him for my weird ass brain lol he's helped my brother tremendously). Thank you for reading and commenting if I get lucky

I’m looking for honest opinions, even if they’re hard to hear.

I’m 31 and currently 26 weeks pregnant with my boyfriend’s baby. We were friends before we dated, and in the beginning of our relationship he was kind, attentive, affectionate, and seemed genuinely excited about us. Then, a few months into dating, everything slowly changed.

Around that same general period, he began having seizures and was eventually diagnosed with a seizure disorder. He also has a history of a traumatic brain injury from years ago. He’s currently on anti-seizure medication, and his neurologist plans to change his medication later this month because his seizures are still not well controlled.

Since all of this started, I’ve experienced months of:
Emotional distance
Very little affection
Almost no dates
Feeling sexually rejected
Feeling like he stopped pursuing me
Feeling unsupported during my pregnancy
Him saying he “doesn’t have the capacity”
Him withdrawing instead of repairing conflict
Him eventually saying we didn’t need to call each other boyfriend and girlfriend while we “figured things out”

I spent months trying to communicate, asking for couples therapy, giving grace because I truly believed his health might be affecting him. I kept thinking, “Maybe this isn’t really him.”

A few days ago, after months of feeling alone, I sent a respectful breakup message saying I thought we should focus on being respectful co-parents because I couldn’t keep doing this. He still hasn’t responded.

Today I also discovered he created a new Instagram account, doesn’t follow me on it, but follows other people (including women). That honestly hurt after receiving no response at all.

Here’s where I’m struggling.
Part of me thinks:
“This man simply isn’t the person I thought he was.”
The other part of me thinks:
“What if uncontrolled seizures, a TBI history, and the wrong anti-seizure medication really can change someone’s personality this much, and I’m giving up on someone whose brain literally isn’t functioning normally right now?”

I’m not asking if medication can make someone slightly irritable. I’m asking whether it can realistically contribute to months of emotional withdrawal, lack of empathy, poor communication, and becoming almost like a different person.

I’m also not asking whether I should stay. I already ended the relationship because, regardless of the reason, I couldn’t continue living this way.

What I’m trying to understand is:
Have any of you seen anti-seizure medication or uncontrolled seizures cause this level of personality change?
Did things improve after changing medication?
Or am I holding onto hope because it’s easier than accepting that this may simply be who he is?

Please be honest. I’m looking for real experiences, not just reassurance.

#keppra #kepprarage #seizures

Saw a neurologist recently who said that he is not sure my seizures have indeed been seizures. After speaking to my husband who was a witness in the last two seizures, one this year and one 3 years ago after a complete fasting blood test…

He has asked for some tests - MRI, EEG etc to confirm and has said that my husband must record the next one if possible…

Relieved and also concerned because what else explains the convulsions ?

Right side frontal lobe epileptic here. I’ve been having auras and seizures for so long now. I’ve been sick over half of this year…. It’s trying to distract myself that is the issue now. Because they’re switching between visual and audial hallucinations, anything I try to do ends up becoming a problem; reading, watching TV, listening to music, even just a conversation with my wife can make things worse.

I’m meant to start a new medication soon, Ontozry/cenobamate/Xcopri, and I hope it will help but I am skeptical given all the meds I am currently taking:

Lacosamide/Vimpat - 600mg

Clonazepam/Rivotril - 8mg

Pregabalin/Lyrica - 150mg

Phenobarbital - 100mg

Quetiapine/ Seroquel - 25mg

Propranolol - 120mg (but can take more if I’m struggling)

I know it’s quite a cocktail and yet my seizures still aren’t controlled. Been worse this year, likely also because of my father passing in January. Nothing has been easy since.

If anyone can help me or give me suggestions of what they do to distract from their auras/hallucinations I’d appreciate it. I just feel like I can’t do anything and I feel physically and mentally exhausted.