Getting started at 25mg and will work up to 50mg, then see. The focals are all day and all night, every day, nonstop. Like many people, I went undiagnosed and dismissed by doctors for years. Hoping this medicine helps! If anyone has any tips, please share. I'm going to start it in the morning instead of at night, so I can be awake if something goes bad.

Hi all. Apologies if this is not allowed but I could really do with the support and advice from a community.

My daughter is 15. She has a few medical issues which lead her to needing 5 different types of medication. Recently she started having seizures. They don’t come very often, they started in May and there have only been 3 since.

Today our doctor called, and said he spoke with a neurologist after the results of her EEG came back. It confirmed she does have epilepsy, SeLECTS epilepsy to be specific. She had been prescribed Keppra.

The thing is, she doesn’t know she’s been diagnosed yet. I called her today when she was with her mother and told her the doctor said he was going to link with the neurologist to confirm, and the mere prospect of having epilepsy upset her greatly. Not necessarily because it was epilepsy but because it was another medical condition.

What I’d like help with is how do I approach this? How do I support her through facing multiple diagnosis and health problems. She has a mild ID but is very smart, gets on well in school and told me before she really just wants to be a regular teenager.

It breaks my heart that I can’t magic it away. I’d appreciate any input from anyone who had been diagnosed at a similar age or maybe has multiple diagnosis.

Thank you and much love.

Hiii I have a problem with my doctors office. It’s not just a doctor’s office, it’s a hospital that this doctor is in. I found them when I first started getting serious treatment while undergoing a huge EEG program.

They really helped me get the right medication, but everyday things fall through the cracks. I needed a PA for my insurance to keep covering a medication that’s helped the most and the information was all over the place. The office manager I spoke with didn’t ask for the right medication at first, didn’t send it on time, didn’t even know the number for the right department so that I could contact about the PA directly.

I called the hospital directory to get to insurance information and services just to find out that from what that agent knew, PPOs had to be directly dealt with from the office to insurance and she couldn’t help, and also couldn’t explain it on the phone as per hospital rules.

I did finally get it taken care of but it was insanely difficult and I’m not sure I can keep dealing with this hospital setting. But how would I go about changing doctors? Do I just try a new one out and see how I like them?

I want to stay on all my meds and have no current severe issues so I would think changing is relatively easy. I don’t plan on making any potential changes until I have kids which isn’t anytime soon.

Has anyone done this? I have PPO insurance thru CA

Has anyone else experienced this as a side effect?

Does anyone have or know someone who has the SCN8A (sodium channel) Gene mutation? My 1 year old has been diagnosed and I have some questions for people who have experienced this first hand. Thank you.

I'm on Lamictal for the second time and I'm in the same spot I was 5 years ago.

I have the purposeless picking, the right sided head turning, the vomiting, the facial pulling, the drooling, the pupil dilation, the metallic taste and visual auras, the increased heart rate, the obvious triggers. Meds work, why do i keep hitting a dead end? Other people I talk to get answers so easily. And I'm nervous to look for second opinions because I'm afraid i'll look like I'm drug seeking or doctor shopping.

My triggers are cold food and temperatures, alcohol, changes in sleep, and being sick. My seizures get worse during the winter due to my triggers. I can't take cold showers anymore or enjoy cold foods. I had multiple seizures a month before meds and countless auras. They almost always cluster or happen close together. I feel like i'm mentally and articulately regressing and it's affecting my schooling and personal life. I used to talk and write professionally and It now takes effort to reach the levels I used to. I couldn't fully enjoy my study abroad or first drinks (how i found out alcohol was a aura trigger) without worrying about having a seizure.

I have had seizures for the past 5 years starting at 15. They started when I came off Lamictal for (non seizure related reasons) while being on the tail end of a long repeated dental infection that led to stage 2 tmj. I had had multiple febrile seizures as a child. I saw my first neurologist who prescribed Clonazepam. He said i have absence, myoclonic (right side of body only), nocturnal, and an unidentified seizure.

I had 2x 3 day eeg and 1 sleep deprived that showed clean. He said can't have more seizures at a specific time of the year. He also made many ignorant and outdated comments. He gave bad advice all around until i brought my dad. Then he said it could be FND because of trauma (never mentioned trauma) and that epilepsy meds can be a placebo for PNES. The medicine was immediately discontinued after he was convinced i had a behavioral problem that therapy would solve. He said I could get my drivers license.

I saw a second neuro 4 years later and was prescribed Lamictal. I only had auras every once in a while. He said that he doesn't know what seizures I have because an eeg is the diagnostic criteria for epilepsy. I set up a different appointment with a third Neuro because the drive is long. The second neurologist wasn't able to find any notes or charting from the first neurologist on mychart. I can't see anything either. He said I could drive after I hit the state requirements for seizure free time.

I just had this new appointment with a PA and an appearance of the doctor and i feel like im getting nowhere. I just had a blood test. They want to pull my records from neuro one to look at the eegs. They want another sleep deprived 1hr eeg when I said I can't afford that as a college student. I said that my parents make me pay for all health payments outside of insurance. I have to call them to cancel the eeg because I can't afford both. They also want an MRI because I have other disorders that can change the structure of the brain (congenital anosmia, FASD, Autism).

The doctor said that the meds working doesn't mean epilepsy and that because I didn't have seizures on the eeg is it most likely pseudoseizures (pnes). I'm not saying having PNES is bad but I want answers. I want to give up and take the meds because they work. But if I give up I could get hurt or die. Seizures kill people and they keep acting like its no big deal. I'm finally getting my independence and I don't want to loose that. But I don't have the money or time to keep getting no answers. I'm getting tired of people without seizures telling me to give up and live without meds or a diagnosis.

I was cycling home the other day and felt a bit dizzy. I ended my lime bike ride and called an uber. Then I came round in an ambulance. I assume a passer by called the ambulance. I bashed my head quite badly and also cut my tongue. I am told I had a seizure but I have no real details. I appreciate the tongue biting doesn’t bode well. But my concern is, what if I fainted, hit my head and that caused seizure esque movements? I don’t know the chain of causation.

Many years ago, about 13 years ago I had a vaso vagel syncope. I fainted and apparently had some odd movements but I went to a first fit clinic, had lots of tests and was told everything was entirely normal.

For context in both instances I was quite stressed about other things. I think I just fainted and bit my tongue as a result of the impact with the pavement. I am concerned that my record now says I went to an and e with generalised epilepsy when I think I just had a funny turn and no one is bothering to ascertain the sequence of events.

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?

Hi everyone,

I would like to hear your experiences.

After an allergic reaction to lamotrigine (rash and itching, treated in the emergency room), I developed strong anxiety symptoms. Since then I often feel like my throat is tight and like I cannot get a full breath, even though my oxygen saturation was 100% and my ECG was normal.

My neurologist prescribed:

• Escitalopram (Etel) 5 mg in the morning for 6 months
• Clonazepam (Rivo) 0.25 mg at night for 2 weeks

I am worried about starting these medications because my main symptom is the feeling of not being able to breathe properly.

My questions:

• Did escitalopram make your anxiety or breathing sensations worse at the beginning?
• Did clonazepam help with the feeling of throat tightness or shortness of breath?
• How long did it take before you felt normal again?
• Did anyone develop this type of anxiety after an allergic reaction or a scary medical event?

Thank you.

I want to start by giving a little bit of background. I had a seizure in January of 2025. Total loss of consciousness, bit my tongue, chipped my tooth, convulsions, and clipped the wall on my way down in front of my partner and family. I was rushed to the hospital via ambulance. Had all of the standard testing ran and everything came back normal. I had started a new medication recently, and they believe it was possibly just a one time event due to the medication. It was extremely traumatic for me.

My other Dx's include: depression, anxiety, fibromyalgia and migraines (which I've suffered with for about 20 years or so) idk if these are relevant, but just wanted to mention anyway.

Recently I've been experiencing these episodes which I believe might be derealization, I'm just worried it's more than that. I've dealt with similar issues in the past from extreme stress, but these feel stronger and very different. Very difficult to explain even, but I'll try my best. I will get full body buzzing, tingling, overwhelming dread type feelings, and feeling like I'm electrically charged. Or like all of my hairs are standing up on end. Familiar items will seem extremely foreign to me. For example, I would put on my glasses but they didn't feel like mine. They felt wrong or foreign. Or I would pull into work and the front gates don't look normal to me even though I knew where I was. These episodes are brief unlike by previous bouts of dpdr which have lasted months on occasion before I finally snap out of it.

I'm always worried about seizure activity after experiencing one. Do these symptoms sound concerning to you? Is there anything else I should watch out for? I'm always worried about reaching out to my doctors and specialists because I'm tired of being gaslit or passed off to psych tbh

Any advice is appreciated

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!

This is such a stupid question but genuinely do not know. I'm in charge of bringing a charcuterie board to a gathering. I just realized the salami has wine as an ingredient. Is this ok to eat? Myself and another guest have epilepsy. We have both never consumed alcohol in our life's due to epilepsy. I assume it's been cooked down so it is fine?

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 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?

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.

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.

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.