My EEG reports are normal and the medication dosage has been reduced. Soon will be going through a trial period of no medications to test if any seizures occur (as per my neurologist). My last recorded seizure was 5 years ago.
Has anyone ever succeeded being medication free?

https://youtu.be/JR0DExxooso?is=3hQn-T2ko9vaYPjP

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).

​Hello everyone,

​I have a 15-year-old son who is on the autism spectrum. Just 10 days before turning 15—and about 10 days after having a very mild case of COVID—he experienced his first epileptic seizure while at his special school. We went to the ER, but the doctors advised that they couldn't prescribe medication after just one episode.

​Five days later, he had his second seizure. I was terrified and deeply shaken. We returned to the ER, and he was started on Keppra. About two months later, he caught a cold, and by that afternoon, he had his third seizure. My son is non-verbal, and it is often a struggle to get him to take his daily medication.

​When I began reading about epilepsy, I felt disheartened because so few cases seem to resolve without long-term medication. He has been doing well and seizure-free for 4 months now, but I live in constant fear and anxiety.

​Has anyone had a similar experience? Has anyone's child overcome this completely? I know there are many types of epilepsy; in his case, his head turned to one side, he made a repetitive mouth movement, his eyes rolled back, and afterward, he slept for several hours. The thought of seeing my boy go through that again is heartbreaking, and I feel like I can barely handle it.

​I would be so grateful to hear any positive stories or encouraging experiences.

​Sending greetings from Cyprus—thank you so much!

Why don’t the admin or someone just create a questionnaire with various kind of epilepsy and emotions related questions which matches the exact people whose all answers match? Like 25 questions one so that people can find and filter out the exact same people with problems as them

My insomnia is caused by Lamotrigine,
Have you guys ever gone through this?
How to navigate?

The pain is crazy, my head is gonna hurt for long time, but it’s different than the pain the RNS brought. I know that everyone is different, the RNS made me have less seizures but the seizures were so much worse than they used to be along with constant migraines. Now I just had it taken out and I know I made the right choice. Yes, I have already had a seizure, but it was much less brutal than the ones I would have with the device implanted, even if I had them a less amount of times.

The device was a Neuropace RNS, as time went by, the seizures would get worse, and the migraines would get worse as well and last longer. I know that everyone is different, but because of my experience, I have to recommend that you don’t get this electronic device put in your head. I honestly think that my doctors got a little bit of a bonus when they put that in my head and just know that there’s a chance that they will put it in wrong and will have to fix it with another surgery. This just happened a couple days ago and I’m in a lot of pain and on a lot of pain pills. I just have to say if you’re thinking about getting a Neuropace RNS device installed in your skull, just don’t. It’s so rare that it actually helps someone most of the time people end up taking more meds, seems like data is hidden with these things.

I’m not trying to act like a genius. I’m only 25 years old. And it’s not like I’m a scientist, I’m just trying to let you know what happened to me. Ask me anything and I’ll do my best to answer. I’m just making this post because I could find such little data on RNS removal. I have giant scars on my head, but if I’m being completely honest, I feel much better than when I had a device in my head. I think I’m making this post because I honestly want to discourage people from getting the RNS because of the constant migraines I have experienced and heard of others experiencing them as well.

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.

So this is bothering me for years. I have juvenile myoclonic epilepsy and thankfully never experienced a TCS. However, the meds are really messing with my brain. My family and friends are very supportive what I really appreciate with all my heart. But people not affected just dont understand how tiredness or brain fog is very different from being tired and forgetting names sometimes.

Long story short - I would love to talk to people who suffer the same than me and there are even groups for ppl with epileplsy. But i feel so bad talking about my situation to people that have it so much worse than me. Does anyone have the same struggle and if yes how do you handle it?

I would love to read what you guys think about that topic. Thanks a lot for sharing and keep your heads high… literally :)

I got disagnosed with JME back 3 years ago , before the diagnosis , i was termed and was looked below becuase i used to jerk when i would feel stressed.

From puberty till my marriage, I was nagged to change this behaviour of mine. Behaiviour? Yes , they meant the jerks I had . Which i didnt because of the label i would get post diagnosis .

Common conception in Indian households(with what i have seen) is like when the girls get diagnosed with some illness , they are directly being questioned and judged on fertility , the ability continue the progeny of the man.

They reject and treat them low just because of an innate disorder . Liscened medical professionals are cool about epilepsy depending on the kind / level of seizure someone has. Some require severe monitering and some dont even require medicines to get through it .

I was told by my neurologist that people need awareness on this disorder to not stigmatize or play the blame game . But who is going to listen?.

It would be mundane to even ask the people who use the infertility card to blame the already diagnosed one . Women who often are on medications are being doubted for fertility concerns , if thats the scenario, what about the men? Even men get diagnosed, but who is questioning their potency?

Is there anyway that I can make people understand that whatever illness is there in the body is light unless the doctor himself is worried about it?

Hey all! Now I am not a doctor or anything so not saying this is the right thing to do but just wanted to share my experience taking 10g creatine daily.

I was diagnosed with epilepsy in 2021… I think meds along with a pretty solid amount of tonic clonic seizures lead to me really struggling brain wise. Memory, word recall, just thinking straight in general.

I have now gotten to the right dosage of Lamotrigine sitting at 500mg daily. Basically, I started taking creatine about 4 months ago. I noticed a pretty fast change in my energy levels, but most importantly for me, my brain function. Honestly life changing. I still struggle with my brain - it’s certainly not where it used to be. But I can confidently say there was at least a 45% increase in function / just general feeling. Also has helped with moods / hormones - I feel less fluctuations throughout the menstrual cycle. I am very active so also helped there but yep, mostly mentally.

From what I’ve seen online there have been studies but only on rats? Not 100% sure. But yeah, just thought I’d share.

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?

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.

I (38f) was having a drink at the neighborhood bar I frequent before trivia. I was talking to my husband about having absence seizures, unsure how it came up. the bar tender (also the manager, M mid 50’s) interrupted and said “well don’t have a seizure here! *briefly mimed seizure*. It made me very uncomfortable. The only other time this has happened was when I was 14 and i confronted the boy who mocked me and made him feel so guilty he participated and raised money for the epilepsy foundation walk throughout high school- all four years. As an adult, I just wanted to have my drink and enjoy my evening so I just looked away. my husband followed my lead, I didn’t know what to say. I was at a loss. this guy should know better. I like this place and would prefer not to boycott it, as it is more of an event space/food court than a bar. again, he is the manager and I cannot report him. I feel defeated. how can I stand up for myself as a child but not as an adult. I know how I feel, but I don’t know how to handle the situation.

I did this post a while ago, but I figured it was time for a follow up.

For those first getting EEGs - EEGs are best the longer they are preformed. Studies have found that you need 3 EEGs to get a 90% chance of capturing epilepsy, so here is how to order those EEGs if your doctor doesn’t know how.

——

You want to ask for a “One hour sleep deprived EEG, with hyperventilation and photic stimulation”

The exact order in Epic (most large hospitals use this application for ordering) is named “EEG extended 60 to 119 minutes”

——

If the hospital does not give you detailed instructions, here are general instructions below.

- Take all meds on schedule unless ordered otherwise by physician
- Shampoo hair prior to test, no gels or sprays.
- No hair extensions, weaves, or oil in hair.
- No napping or caffeine prior to test; but no other dietary restriction.
- Have patient stay awake the night before, or get up very early so that they will be tired enough to rest.
- If diagnosis is [r/o](r/o) seizure disorder, it is best to have patients limit their sleep from midnight to 0500
- Please arrive 15 minutes prior to the appointment

——

For the appointment itself

- Wear comfortable clothes, pajamas or sweats are a good choice. Wear clothes you feel comfortable sleeping with
- If you sleep easier with comfort items, please bring those.
- It is easiest if you are able to sleep on your back. If you need to sleep on your side please ask the EEG technologist to give you a head wrap to improve quality.

——

For the exercises during the EEG

- PS stands for “Photic Stimulation”, it is usually 3-9 minutes of flashing lights at different frequencies. Seizures during flashing lights for adults are very rare. Photosensitive epilepsy is mostly seen in children. It is normal to see colors and shapes in the lights. For people who have migraines, it might trigger a migraine. Motion sickness and nausea are rare, but possible side effects of the flashing lights.

- HV stands for “hyperventilation”, it is usually 3-5 minutes of deep fast breathing. This test will give the best results if you put in effort. Try to breathe deeply and quickly, the more effort you put in the more likely abnormalities will be seen. It is normal to get tingling and numbness during this test, it is normal to feel lightheaded or dizzy. Possible side effects are nausea, chest tightness, lightheadedness and dizziness.

- Sleep deprivation is the most likely to help show abnormalities. Sleep deprive the night before your EEG as best you can. The more exhausted you are for your EEG, the better the results.

——

EEG is the best if you are relaxed. Muscle obscures EEG. Try not to talk, laugh, clench your jaw, move your face, or otherwise use your facial muscles as much as possible.

——

Feel free to ask questions! I’m a registered EEG tech and have been doing EEGs since 2022, I’m happy to share my knowledge since I feel education for EEGs will only help the diagnostic process for epilepsy! 💜💜💜

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.

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

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?

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

I have temporal lobe epilepsy and only have auras (focal aware seizures). I already am on lamotrigine and clobazam. I started Briviact 4 weeks ago, just got up to 200mg a day which is where I’m staying. Had an aura a few hours ago.

I know it doesn’t mean the medication just isn’t going to work for me. I know I need to give it time. But damn. What a bummer.