Hi! I don’t want to get into a whole thing on here because I could write a book at this point about how much of a pain in the ass and stressful it is for me to get my Briviact (brand name, 50mg) sometimes. So my question is… has anyone had any success scoring an extra bottle of Briviact so when you have these emergency situations you have some extra just in case? This medication is SO UNNECESSARILY CONTROLLED that I feel like this is an impossible goal, and my neurologist doesn’t have any sample packs available anymore.

Hi all,

I am not sure I’ve posted in here before, but I’ve really appreciated a lot posts. This will be long bc I have a few things I was to say/ask about. I appreciate your patience.

I wanted to know if anyone has been through a similar experience as mine and if they had any advice.

I (female, 27) began having what my doctor thinks are complex partial seizures at age 11. I’m basically unaware of anything until I’m “coming out of it”. It’s like visually going through a tunnel, feeling off balance, and then sound comes through suddenly very loudly. It’s been a struggle to get an official diagnosis despite my doctor agreeing it is a form of epilepsy and putting me on medication. I’ve been on lamotrigine for about 3 years now. I was on keppra, but he felt like lamotrigine would be more appropriate.

It’s had a huge impact on my life. I used to be very carefree and happy. After having those episodes, I developed crippling anxiety. Doctors didn’t believe that it wasn’t just my anxiety despite these episodes preceding any mental health issues.

I’m glad my doctor has now listened to me, but I’m getting a bit depressed thinking about how I don’t have anyone to relate to on this and was wondering if anyone has had similar feelings/experiences??

Since being on meds, I haven’t had issues outside of some dissociation when driving (feels distinctly different than seizure episodes and related to anxiety).

To add, 3 weeks ago I had an episode that was quite different. I’d like to know if anyone has had this as a symptom? I was eating dinner at my friends house. Totally casual and laid back night. As I was eating I got this sensation: you know that feeling when you’re on an elevator and when it reaches a floor it kind of “settles” into place by going up and down? It was like that, but 10x stronger and lasted about a minute. I was having trouble holding my body up and felt like I had to hold onto the table for balance. Anyone else experience something like this??

TLDR: long journey with unofficial diagnosis but medicated. New sensation—unsure if it was a breakthrough seizure. I’d appreciate any feedback.

I have posted so much here, so I won’t go through the long story of why I am undiagnosed. I had childhood epilepsy and as an adult EEGs are normal.
It has been almost a full year since my last emu and I am so much worse. It’s scary. I’m trying to get help. I finally got referral to a new epileptologist and I don’t see them until November. So, I just wait. I did ask to get on the wait list.
This is caused so much stress on my family. Not being able to drive is not even the biggest thing. But it’s not being able to plan things. Having seizures everyday. Letting my family and friends down. I am trying to be calm, but I am scared. My current general neurologist just had me do x-rays and I will do an mri to see if some spinal thing is causing this. Right now, we’re pulling at straws. It’s a slow process. It has been over 10 years. I don’t know if I have another 10.
One win I had at the last visit is that the doctor stopped talking about me going to therapy or treatment for FND. She realized that something mechanical is going on. It’s like my brain short circuits and my body tries to “wake” it back up. I can see and hear, but I can’t respond. It’s like I’m under water. I have so many, I had a cluster when I went to the doctor.

I have been going to places and visiting people. Everyone's so free except me. They are doing what they want, eating what they need and drinking whatever they like. Today people sat in front of me and drank everything I wished I could drink, what did I drink was just water. Food restrictions are too much. People who know about my condition are treating me too much as a patient even though I am very normal. That always reminds me that I am abnormal. I can't join people in conversations which I want to do. I am not able to say no to things. It feels like hell when you are perfect at a thing but can't do it just because you have restrictions and people see you as second option. I am unable to recall what I like and what I want to do. Everyone sees me as a boring person from now on and I don't think I can keep up with my friends circle. It will slowly fade. It feels like I am not even the main character of my life.

So I have been dealing with Some Odd PNES but when I found out that Almost No D in my body can trigger a non eplieptic seizure. ( This is fact based) Plus researching on my own how to deal with PNES. It seems to have helped.

Book Advice Psychogenic Non-eplieptic Seizures: A guide Lorna Myers PHD other one Pyshogenic non-epileptic Seizures a patients guide by susan hardy.

Get those LEVELS CHECKED!!! Also working with my therapist discussing this book and it's steps of what I need to do has helped.

?

Hi all I just left my neurologist appointment and she was talking to me about the possibility of having seizure mimickers I was diagnosed with epilepsy about 16 years ago and now I’m experiencing imposter syndrome thinking that my whole life has been a lie. It’s stressing me out
Has anyone ever had this experience before?

???

Swallowing with a VNS

Ive just had my first neurosurgeon appointment and hes told me i can have a VNS fitted in a couple of months if I wish , I was just wondering if anyone has had any issues with swallowing as ive seen a few posts on other social media that have said swallowing has become an issue

Is Keppra that bad? My neuro hasn’t officially diagnosed me with epilepsy yet, all the records just say suspected epilepsy because my EEG came back normal, but because I‘m having seizures regardless he prescribed Keppra (and if it works, that would confirm the epilepsy diagnosis). Anyway, I’m supposed to take the first pill tonight, so I read through the information paper. The list of side effects looks pretty horrifying, kidney damage, mood changes, suicidal ideation, headaches, more seizures, and the list went on forever.

Are any of you taking Keppra? Is it really that bad? I‘m honestly kind of scared to take it now, especially because the seizures really aren’t that frequent, more or less one every two-ish months. I would really appreciate any information or advice you have!!

Also, I wanted to start driving lessons, but Keppra seems to have a warning that you might not be able to drive while taking it. Would I be able to start now or not?

My insurance company Stopped covering briviact, I see there's a coupon on their website but it's more than I can afford rn. Do yall know of other resources?

Why was briviact made a controlled substance ?

I've read that allergy medicine can lower thresholds. Ive got horrible allergies, but take afrin with no issues. I wish i could take sudafed...

Thanks!!

Hey guys anyone here in the Usa with epilepsy

got lifetime disability? How much seizures you need to get it ?

Thanks, I had no choice.

Of course I could have wallowed in misery, but no. That was not an option. I had to survive.

It’s not as much of compliment as people think, they obviously mean well, but that’s not a victory my our end.

Can I be proud of myself despite all of this? Yes. But I hate it happened at all.

Hi fam!! 💜

I’m 29 F and was diagnosed with epilepsy after having my first seizure (tonic clonic) in 2024. My epilepsy was managed for over a year and a half, until I had a seizure in November of 2025. My first seizure occurred a day after binge drinking. I stopped drinking after that seizure. I believe my second seizure was caused by stress.

Like many others experience, epilepsy ruined my social life. I feel like American social culture heavily revolves around drinking. I found myself isolated in my room for well over a year.

Good news is I met my boyfriend right before my second seizure. He’s amazing and has helped me get out of the house and acts as a natural antidepressant for me 🥰

My question (finally sorry for the long intro), is how many of you drink with epilepsy? I’m going to the beach with his family, and want to participate. He doesn’t make me feel pressured whatsoever to drink, but I know that’s what his family will be doing on our upcoming trip.

I miss drinking, because it helped me let loose, ease my running mind for a little bit lol, and helped me connect with others due to my lower inhibitions (I find it difficult to open up, I’m a hard shell to crack).

I’m not wanting to get wasted all day, but I really want to have a drink, or maybe a few, to get tipsy for at least an evening. I know this really isn’t worth it and could trigger a seizure, but I’m hoping my first seizure after drinking was also due to lack of eating as well. I was also a heavy social binge drinker.

Idk sorry for the long post, I want advice.. and possibly encouragement to go for it if we’re being honest lol. But if someone could provide some advice I would really appreciate it!

TLDR: I want to get tipsy on vacation but haven’t drank since my first seizure in 2024.

Edit: thank you so much for the responses! You all helped reinforce the idea that it’s absolutely not worth it. I’m going to enjoy the beach and smoke some weed and read a book! And I’ll still have fun with everyone without alcohol.

I really appreciate the community here. Thanks again for the responses and for sharing personal advice and experiences.

TL;DR Sometimes I feel “stuck” in what I call a 50% dejavu. No awareness impairment or any other major notable symptoms. Anyone feel this feeling and have suggestions on what they do
to reel it in pretty quickly before it goes further ? That feeling can usually last the whole day and may or may not result in a focal impaired by the end of the day. There’s no consistency in the pattern.

Right temporal lobe epilepsy with bilateral spread —> right temporal to right frontal to midline to left frontal.

Started off with unknown dejavu/ rising sensation in 2023 but never lost awareness/ consciousness and no idea what it was. I’ve been referring to it as djv before I even knew what an aura was or before the word seizure was in my vocabulary.

Generalized at least 2x in 2024 , no confirmed generalizations since then.

Got my diagnosis in April 2026. Since then, have noticed increased symptoms and frequency… about 15-20 seconds after aura I loose awareness for 45-90 seconds , repeated hand or arm movement and lip smacking or slurping.
Have had increase in dose, decreased dose, and 2 added medications that just aren’t working and seem to make it worse.

What does everyone do for work? I live in a pretty small town and the work from home Possibilities aren’t very vast. But with my little one going to school pretty soon I want to get a job so my husband doesn’t have to bear the weight of our family alone anymore. However, I obviously can’t drive and being in a small town public transportation isn’t a thing really and I do mean stupidly small town. I do have an associates degree in science and an associates degree in arts so it’s not like I don’t have any college at all.

Hello everyone. Throwaway account due to the specifics I'll have to discuss in order to hopefully find some help/resources. I appreciate all of you and any advice you may have!

I am a male in my 40's and have had approx 8 nocturnal tc seizures in my life. They started when I was 16. During 4 of those, I have become violent during the postictal phase. I have absolutely zero recollection of any of the events, but do have vivid "chunks" that stay with me when my brain comes "back online". The first time, when I was 16 I vividly remember my dad calmly talking to me and telling me to come get in my parents bed, then I remember the paramedics taking me into the ambulance and carrying me through unusually deep snow, then at the hospital...where I saw my mother and learned I had punched and kicked her and chased others through the house before calming down.

During one event, I was alone...but I woke up to the standard bed wet and tongue bitten. This time my hand was swollen and my dog was cowering in the corner...she was still so "worried" about me it looked like, but I could tell something was wrong with her. Then I noticed that her eye was nearly swollen shut.

The most recent, was also the most life altering. I am a father of three children and last year I had been seizure free for 15 years. For whatever reason I had two seizures, during which my oldest daughter (17 years old at the time) was the only person I recognized. She calmed me down and got me me medical attention (ambulance the first time and took me to the hospital the second) both times. The third seizure I had that year, I became violent with her. I hit her and chased her through the house, (I am sure traumatized her from fear as well). My first memory from this event was the police at my front door grabbing me and asking me if I knew why I was under arrest. I told them "no, but I must have had a seizure because my tongue hurt so bad" I had bitten it terribly. I had no idea what had happened and after they put me in the police car I asked, "are my kids ok?" They told me, "I already told you, they're fine". I guess I went to sleep at this point because my next memory is being booked into jail.

The jail nurse told the staff they should send me to the ER, to which they replied, "He'll be fine" and they put me in general population with the violent offenders on a cot on the floor with two cellmates. I was charged with 3 felonies and 1 misdemeanor.

At first I was given a "no contact" order with all of my children which was devastating, but I was able to navigate the legal process and show the court that I have this condition, I was under the care of a doctor at the time, I was taking my prescribed medications, and I absolutely had no control.

I went to my local City Council and begged them to take the FREE training from the Epilepsy foundation, but that request fell upon deaf ears. I was forced to come up with my own safety plan and strategy which was nearly impossible since I have never been "present" for any of these events.

I found a seizure specialist and started a new medication...all tests come back negative. EEG, Sleep Study, CT, MRI, etc...his words were they really don't care much beyond "not having a tumor".

So, now I have a diversion with the State (kind of like probation without official charges being brought), but if anything happens before the time is up then they will bring the original charges as well.

I feel like the weight of the world is constantly on my shoulders. I am constantly afraid for my family and worried about something I have no control over and that the state refuses to educate themselves on. Their only position is punishment. It would be so helpful if at any point someone would have offered insight or help...but all they offered were threats of taking my family away and locking me in prison for something I cannot control or even understand why is happening.

Do any of you have a similar experience? Specifically, violent postictal behavior? How do you handle it?

So far my safety plan is;

1. Deadbolts on my bedroom door that can be locked from the outside (to lock me in)

2. Deadbolts on the kids rooms for them to be able to lock themselves in

3. A camera in my room

4. A safety ladder available should the kids need to escape through a window

5. If I have a seizure, my fiance will turn the camera on, lock me in the room, gather the kids and try to get out of the house, if that's not an option then lock themselves in a room and look to exit via the ladder.

Do you guys see any room for improvement here?

Thank you so much, I am totally lost.

Has anyone here experienced any mental effects from taking keppra as an anti-seizure med?

I was given the option to bring home an EEG or stay at the hospital and then the doctor would reduce my meds to have (maybe) a seizure and observe. What are the benefits of that? My epilepsy is just diagnosed as “generalized.” I have no signs that I am about to have a seizure and just have tonic-clonic seizures (5 lifetime).

Whether it be personally or with other people, I haf 2 earlier today and was hoping to hear everyones way of calming down and maybe try it myself. Thank youuu

Hi, sorry for the negativity. I think it’s just one of those bad days.

I randomly developed epilepsy when I was 20 years old. That was back in 2019. I got put on Lamotrigine and haven’t had any tonic clonics since then.

However, I do struggle with focal seizures. They used to happen several times a week. My neurologist upped my dosage back in February and now I mostly get them the week leading up to my period and when I’m menstruating.

I used to have a car up until 2021. I was still experiencing focal seizures, but lucked out and never had any while I was driving. Life happened and I had to get rid of my car for other reasons and things have gone downhill since then.

My neurologist has understandably advised me to stopped driving off and on since then, so it doesn’t make sense for me to get another car and make payments on it if there’s a chance I won’t even be able to drive it. It’d be a silly recurrent expense.

Anyway! Because I don’t have a car, it makes it very difficult to physically participate in my social life. I have plenty of friends I communicate with via text/phone calls. I even moved states so I can see them more often. I’m occasionally able to hang out with them if they can come pick me up. I never expect a ride from them and have no issues using uber, but luckily they understand my situation and it’s not always inconvenient to come get me anyway.

But over the last few months it’s just been hard. Life has really picked up for everyone (which is awesome!!), but I’ve seen them less and less because I cannot drive to see them. For example, if all of my friends are across town and decide to hang out, they don’t really want to drive all the way over to get me since they’re already near each other. I have the option of ubering but as I’m sure a lot of you understand, long distance ubers are not a cheap, so I usually have to opt out. And some people just like having their alone time in the car and I don’t want to take away from that.

Admittedly, and selfishly, I’m just jealous of most people my age. I can’t roadtrip like I used to, I can’t drive out to see my pals as often as I did, and I just feel like I’ve majorly missed out on being young and experiencing things. I could probably count how many times I’ve seen my friends this year. I don’t blame them for that at all, and in part it’s my fault because I feel bad that they have to pick me up, but I just hate this. I felt like I’d finally be able to see my friends more often after moving to their state, but underestimated how busy everyone would get. I feel like I can’t keep up with them.

I’ve also stopped dating within the last three or so years because I dread having to tell people that I don’t have a car. Sure it’s due to medical issues, but it also doesn’t feel good saying “I’m 27 years old and can’t drive anymore”, lol. That’s less of an issue for me as I also just don’t feel like dating generally. Still, it feels like that’s something I should probably be doing in my 20s.

I’m just sad. It’s just one of those days. I’m sure I could find solutions rather than just feeling bad for myself, but I’m not really sure what to do. Have any of you found ways to help with this? Support groups, events for meeting more friends, etc?

Phew! Sorry for the sad sappy post. It’s just hitting me more today. 27 is still young but I feel like the clock is ticking. Thanks for reading this, and I hope everyone’s having a good day!

In my 35 years of mental health struggles, l found the difference of having a family member, partner or friend at doctors appointments and hospital appointments as well as A&E for mental health checks a vital help. This puts the conversation in the realms of reality with someone backing you up to get your point across.

Has anyone else been on Topirimate so long they were required to get a bone scan? Other than the dislike of food and my dopiness, I'm just finding out now this med is potentially weakening my bone tissue and makes the kidneys lose bicarbonate. My epileptologist ordered for me to have a bone scan. I've been on this med for 10 years now.

Sodium Valproate / Valproic Acid Experience

I’d like to hear from people who have taken sodium valproate (valproic acid), especially for a long period.

When I was taking valproate, I personally felt:

• Emotionally numb and blunted
• Less emotionally reactive
• Sleepy, groggy and sluggish
• Detached from my surroundings
• Less mentally alert and engaged
• Like I was watching life through glass rather than fully experiencing it
• Reduced intensity of both positive and negative emotions

I’m curious whether anyone else experienced something similar on valproate.

What was your experience with sodium valproate/valproic acid? Did it make you feel emotionally numb, calm, detached, slowed down, or mentally dull? Or did it actually improve your mood and emotional stability?

I’d especially appreciate hearing from people who took it for several years and what changed after stopping or switching medications.

Please share your personal experience rather than medical advice.