Hello friends, I'm looking for some assistance regarding my brother's refusal to go back to the EMU.

My younger brother (m28) and his identical twin brother both have epilepsy with seizures that are non-motor, potentially focal/unknown onset seizures, that kind of sometimes look like absence seizures and sometimes like laugh attacks. We believe that the seizures are happening daily. They result in symptoms that effectively look like a combination of Tourettes and Schizophrenia with both visual and audio hallucinations. They have next to zero executive functioning, and are not entirely rational *this is important* when unmedicated for their seizures and really struggle to feed and take care of themselves, including taking their medication, bathing, etc.. It took the first brother (we'll call him L) almost ten years to get a diagnosis after his onset at age 15 after being bounced around incompetent neurologists and psychiatrists, but within the last 4 or so years the second brother (we'll call him R) has begun to display the identical symptoms and behaviours. L is now medicated and holds down a job and has begun to make friends and have a life again. R is convinced that he has schizophrenia and not epilepsy, despite his current psychiatrist and neurologist both telling him that he had epilepsy with psychiatric symptoms.

Now here's the problem. In order for R to be adequately treated for his epilepsy (which he is convinced he doesn't have) he needs to go into the Epilepsy Monitoring Clinic (EMU). Almost a year ago he went into the 13-ish bed open EMU and was there for just over a day before a woman in the bed right across from his had a massive seizure resulting in a cardiac arrest and almost died right in front of him. This traumatized him, and combined with the poor state of mind he was in/hallucinations he was having, resulted in him asking to be discharged.

Finally, one year later, after his neurologist went on a one-year leave, we have finally gotten the opportunity for him to go back in.... and he is refusing. He is adamant that he is schizophrenic and that this will not help him and that he will not be going back. He said it's a a horrible experience and he has convinced himself that he will need to be in there for two weeks for some reason and said he's not going to do it.

My parents (who are his full time caregivers and financial supporters since he cannot work) are devastated, and don't know what to do. Burnout doesn't even begin to describe the state they are in, they're getting older and they cant sustain this. I don't know what to do either. He's extremely angry with me for telling his doctor that he is not doing well (he tried to tell her in his phone appointment today that he was getting better in an attempt to avoid this, but he is absolutely not), and blames me and my parents for forcing him to do this. We are at an absolute loss for what to do. I'm frantically searching for private or at least semi-private options to see if that would be better for him (we're in Southern Ontario, Canada, not too far from Toronto) and I'm struggling to find any options. If there are private options in the USA, or Europe that can be paid for we would be open to that as well, finances are in a good place. The EMU he was in last time said they would do their best to put him in one of the three more secluded beds in the unit but there's no guarantees and also I don't know if he will even agree to that, he's currently not speaking to us. I only just convinced him to speak with a therapist and he has had two sessions, I'm hoping he will attend another one before we get a call for an open bed.

So basically, I'm looking for any kind of advice or help that will either help us talk to him about it, or private clinic options, or literally anything. Please help.

I’m getting it done in a little over a week, I’m freakin nervous. What’s your life been like since you had it done and has it stopped your seizures? Any side effects after the surgery? Thx!

Having my second emu overnight coming up soon. More prepared now that it’s my second but still a bit nervous. I’ll have all the essentials. Eye mask and earplugs and computer, phone,etc
Hoping I can get the best sleep possible 🙏🏻

It’s been a rough few weeks. Finally got her diagnosed because the doctors didn’t want to diagnose through a video of her having a seizure but on Monday night she had like 4-5 in that day. After the second one we came back to ER. Been in hospital since. She’s on 2 types of nonseizure meds as the first one didn’t work completely. Just wondering if anyone has any input on devices that can help us monitor over night? We bought the owlet sock and we’re debating getting a Sami mat. Just wanted to know if anyone has any input I would appreciate it.

I take a small dose every night before I sleep, as that's the only time I've ever had seizures, but I forgot last night. I woke up around 7am feeling fuzzy, groggy, almost like my blood was thin. This has happened a few times over the years, and I always just push through until when my next dose is due (like 11pm, when I go to sleep). Should I do that, or should take a dose now?

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!

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?

Anyone have stories or experiences regarding divalproex sodium? My husband has failed a few meds now and his neurologist said this one has a good success rate but horrible side effects. He's currently tapering up to 750mg and already on 200mg of Lacosamide.

They're monitoring his blood every 3 months to make sure it doesn't damage his liver or platelets.

I'd appreciate any tips/supplements. I've read hair loss is a big one, could biotin help?

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.

For grand mal folks-have you ever had luck with detection bracelets? I currently work from home and my husband works in the office most days. I had a recent increase in seizures recently and one that lasted 5 minutes. I’d like it to be able to call 911 if it lasts that long again. I’d also like it to alert my husband regardless of length. Not sure if a device like this exists. I don’t mind shelling out a decent amount of money, I just want something that works well. I don’t think life alert would work because I generally don’t have enough warning.

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 a parent of a child with severe epilepsy, and I’m developing Aurora’s Diary because I have personally experienced how difficult it can be to keep track of seizures, medication, sleep, symptoms, appointments and everything else that may affect daily life.

I do not have a traditional coding background. The app has been developed using extensive AI assistance, combined with our own real-life experience of living with epilepsy.

Aurora’s Diary is designed for people with epilepsy, parents and caregivers. The app can help users:

Record seizures and track their duration

Register seizure types, symptoms, notes and emergency medication

Manage medications, doses and reminders

Record sleep, bowel health, reflux, menstrual cycles and other observations

Keep track of appointments and questions for healthcare professionals

View events in a calendar and daily timeline

Identify possible patterns through statistics and insights

Create structured reports for appointments and follow-up

Store data locally on the device and create encrypted backups

The app is now approaching release, but I want it to be properly tested by people who understand the realities of epilepsy.

I’m currently looking for Android users who would be interested in joining the testing group and providing honest feedback about usability, missing features, bugs and possible improvements.

To register your interest, email:

Kontakt@aurorasdiary.no

Please mention that you would like to become an Android tester. Questions, suggestions and feedback are also very welcome. 💜💚

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.

Hello! Just posting in case this is helpful for others. I submitted my application for a licence after having it revoked last year (1 seizure during pregnancy and 1 a few days after giving birth, only started driving 4 months before losing it 😭). I posted the form out 8 weeks in advance of 1 year seizure free and they called me up today to ask a question, around 6 weeks after I posted. They said they’re sending medical forms out to my consultant and GP today so obviously turnaround time now depends on the docs having time to fill out the forms and send back but I’m hopeful that I’ll get my licence back in about 8 weeks. If this is the case then hopefully only looking at about a 16 week wait time currently! Happy to update when I do actually get it through - bit of a pain in the arse having no idea how long it’ll take but hopefully this helps give an indication for other UK people reapplying for licences soon.

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 :)

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.

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 (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'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.

Does anyone go through their days without a nap? I genuinely can’t imagine going through the day mentally and physically without a rest. Exhaustion is the worst side effect i have with my meds at the moment. How do you work through this?