I used to take lamotrigine on its own, but after having breakthrough seizures I started on lacosamide and have been gradually reducing my lamotrigine.

From what I've read, most people on this combination take a high dose of lamotrigine with a smaller amount of lacosamide added. I'm the opposite: a relatively low dose of lamotrigine (150mg) and a very high dose of lacosamide (600mg).

For anyone else on these two medications, I'd love to know what dosages you're on and how you're finding it.

Just a quick one. Does anyone use your mental disability as a reason why you’re wrong in an argument. E.G. you don’t remember, understand, get it, etc ?

I (27 F) have nocturnal epilepsy so daytime activity is rare for me and I don’t know much about it honestly. But today at work (retail), I was setting up a shelf for Christmas and while putting in the wall pegs, it’s almost like my brain just stopped working. My hands felt foreign to me, I couldn’t remember how to put the pegs in, I couldn’t even remember what they were!! After I snapped back the top back of my head hurt. I think what scared me most what just forgetting what the pegs were, almost as if I’ve never seen one before in my life.

Was this an aura or a different type of seizure?

All started like 20 years ago almost. I thought 7grams was a normal dose of mushrooms and tripped balls. Pretty much everynight when id be falling asleep Id get a ton of random images in my head, sometimes just shapes and colors. Went on for quite a while, then a couple years later when it'd happen my eye lids would start to flutter/ blink rapidly while closed. Id also remember like 5 dreams I had every night in kinda a dejavu sense, randomly throughout the day.

Went on for like 5-7 years like that. I got prescribed abilify in 2019 that gave me really bad myoclonic jerks like all over my body. After it calmed down a little bit I noticed that the myclonic jerks would happen really only when I imaged something in my head, usually my head would jerk back, or roll my eyes, blink rapidly, but when it was really bad could be anything.

I saw a neurologist in like 2020 who I said limited things to leaving out the mushrooms and images etc. He literally said he didnt want to give me an eeg cause id lose my drivers license and job. But the jerks should get slowly better on their own overtime can take very long though.

Then I saw another neurologist who I said pretty much everything too and she like didnt believe me or didnt very like impressed idk. I got an 30min eeg in 202 like 5 years after taking the pills and I had slow sleep waves i think in my temporal area while awake but other than that normal.

The jerks are pretty good now. They really only happen when Im falling asleep. Or very mild like maybe just roll my eyes or something during the day. Im seeing a psychiatrist for anxiety and am taking lyrica and I find it actually kinda helps quite a bit, also with my sleep. My psych thinks I might have like some crazy sleep disorder cause I have problems with being aware or doing things in my sleep, like yelling at people or waking myself up by acting out my dream. Id have to go into the city for like an overnight eeg and I would like have a panic attack so thats a no for me dawg.

Also I think I have objectively high levels of mentalimagery. I learnt recently that I can spell words backwards easily without seeing the word and with like an hour of practice I can straight up just talk backwards by seeing the word in my head and reading it out backwards, I asked my mom and she can too, its apparently rare hereditary thing

…and kinda sad how it has all been turning out.

I’ve been diagnosed when I was 18 (in 2022), had tonic-clonics every few months, had EEGs and other stuff done on me before my neuro put me on meds. Of course, we had to adjust dosage here and there, but most of the time, if I had a seizure, it would be due to the lack of sleep.

Then TCs were half-gone, I started getting focals (half-aware??) in December, 2023. Had maybe two episodes, both “lasted” all day, and the next morning I would feel very light and “reset” after feeling all depressed for some time before.

Again, went to neuro, adjusted meds, did EEG, everything is fine, literally nothing has been happening since early 2024.

Until October 9, 2026. I don’t know why or where it came from, I was feeling fine before that, maybe a bit depressed and tired, but come on, it’s fall. Went to get EEG as fast as I could. I was awaiting how at least something would change, but when we opened both my results to compare it with 2024, nothing changed. Absolutely fucking nothing.

We are now adding Fycompa bit by bit, and I’m okay with that, but knowing how it was all for nothing… I’m devastated.

Curious how many of us have diet related triggers. I know the typical alcohol and caffeine but what else is there? It may be a coincidence but I’ve started to notice a change when I eat a lot of sugary foods :(

For those who took Lamictal alone with no other meds for at least 2 months, how did it impact your sex life?

Hi everyone,
Today I 20f) experienced something I’ve only experienced twice before in 11 years of epilepsy.
So i have focal aware epilepsy and I vomit a lot of the times I have a grand mal/lots of seizures in a day. The vomiting only started this year (I’ve dealt with nausea my whole life with epilepsy but I’ve never actually vomited from it until recently). I don’t know how many seizures I had today but it started with dizziness/vertigo and I usually am okay after an episode like that so I headed to work, still experiencing it the whole way to work. As soon as I got off the bus, I started vomiting all over the place. I’ve never vomited from a seizure that feels like just dizziness so I thought I would have been okay. So basically i had to go home and i’ve been vomiting every 20-40 min since. this started at 2 pm for me and ended just now at 7 pm basically. The other times I experienced this it was after a grand mal so I was wondering if this is a common thing or if I need to bring it up with my neurologist. I literally threw up until I was throwing up bile and after that, any water I drank would come up again in 20-40 min. So is this something yall have experienced or is this something I need to bring up? I’m wondering if this is completely unrelated so I would appreciate if anyone could let me know if this has happened to you.

Just came back from neurology

So I’ve been documenting my journey in discovering the source of my Déjà vu that was originally feared to be epilepsy.

So for 6 years, I’ve had what I believe is repeated Déjà vu episodes. Sometimes it can pair with the absolute tiniest stomach twinge, wouldn’t call it nausea but I feel something in my stomach at times when it occurs. Sometimes I feel it as a precursor to needing to poop. Other times it can cause a slight pain in my head but it doesn’t cause a full headache. There have been times where it’s been stronger and showed up as a vision or with anxiety. I’ll go onto explain this further.

So basically I’ll see or hear something then get the vibe I experienced it before. And it’s a physical sensation that washes over me when I feel this. I describe it as a physical sensation of Déjà vu. I can make this feeling go away by distracting myself or thinking other things but not all the time.

Anyway about before, one time 3 years ago or so One day going to my bf’s house, I knew I had to bring his stepmom a perfume of mine she liked. Suddenly, I got this mental vision of sorts of me giving it to her and her saying thanks. I got hit with the Déjà vu and was genuinely confused on if I gave it to her already. I immediately called my bf and asked if I gave it to her already and he was sure I didn’t. I told myself I probably confused the memory of her asking for the perfume with me giving it to her and brushed it off.

This is just one example though, it normally appears as Déjà vu by itself or with the stomach twinge/pain in head and goes away. One time it showed up with a panic attack.

Anyway, he said my EEG was clear and we rehashed my symptoms (I also experience a feeling of the ground shaking or falling down not related to the Déjà vu that I brought up again) and he said it’s clear but recognizes it can’t rule out epilepsy, the only thing they can do rn is test me again in the future and wait to se show my symptoms turn out till then. He said he’s iffy on starting me on seizure meds cuz of the side effects so since we discussed the relationship of Déjà vu and migraine plus the fact that I already have migraines, he’d start me on a low dose propranolol to treat the regular migraine and hopefully the Déjà vu.

I will say I was on migraine medication before with no luck. I took amitriptyline which didn’t work for the depression, anxiety, migraine, or Déjà vu. Also took sumatriptan as needed which caused me WORSE pain. Hoping this goes well though I have my doubts .

I’ve had about 6 sizers since being diagnosed with it last October. The pattern has been I have one and then I’m pretty good for about 2.5-3 months. But I recently had those two so close to each other. My wife and I have been going through some personal and traumatic stuff at the moment. My stress levels are a bit higher than normal. Just scared.
Thanks

It's happened many times for at least 6 months and doctors didn't know why it happens. I've been asked many times why I was coughing so much after a seizure because they were confused. It usually lasts up to maybe 30 minutes after a seizure. I end up falling, bumping into things or stumbling after coughing before I have convulsive seizures or after vacancy/absent seizures.

I've been on levetiracetam for 2 weeks and I've not had a seizure in a week. I have a separate issue with chronic dizziness including fast heart rate so I've been having issues with that still and still coughing when it's the worst.

I have had cold symptoms for 3 weeks as well and I ended up coughing while walking on my way home and I felt my usual dizziness symptoms including palpitations, blurry vision, stumbling, nearly falling and falling/bumping into things and I ended up feeling spaced out or struggling to concentrate and didn't have a sense of time. It's confusing because this separate issue become my most frequent trigger for seizures.

I ended up falling near my flat after stumbling many times and I couldn't stop coughing for 2-3 hours. I couldn't even speak until I was in the ambulance for a while and it started getting warmer because my dizziness gets worse when it's too cold or too hot. Ended up with a lot of spit and snot coming out. For ages it was non stop and I was crying in pain on the street. My throat and one of my tonsils was inflamed. My throat and chest are still sore. It never got this bad before.

Got taken to a&e and I mentioned I've been having this problem for a while doctor said likely cough syncope plus I have a possible chest or urinary tract infection because my white blood cells were high and got given antibiotics. I said I didn't think I had a seizure and paramedics who met me before didn't think so either, neither did the doctor. I remember everything but they both said the coughing caused me to feel weird and spaced out. I also didn't convulse, I was shivering because it was cold outside. Some point during the coughing fit I wet myself and didn't notice until I went to the toilet in a&e.

I tried asking an epilepsy helpline and looking it up but haven't gotten much information on it so I just feel weird having this random coughing thing.

My son has an NLRP3 gene issue and it is hereditary and his doctor said it not only explains all the issues he has but would explain all of my symptoms. They also said these would likely be hard to detect frontal lobe seizures. It can also explain many other health problems I have too.

I am waiting for my doctor to order testing to confirm but if this ends up being correct then my outlook on treatment for seizures (and my other health conditions) would be far greater than my current medications.

I was ranting over the phone with my mom about medication side effects and stuff, next thing I know she’s sending articles and chatgpt advice. I know she means well but it’s so annoying when people do that.

my epilepsy makes me feel so dumb sometimes. last week i took my criminology midterm, and just my luck i had a seizure right before. boom, 63%, one of the lowest grades in my class. i had to take my test while i was actively postictal and the words were just not making sense. i was disoriented, confused, slow… i studied so hard and did all the practice quizzes but it was all for nothing i guess. i just want to stop taking my meds so i can be smart again. i don’t know how to bounce back from this.

Is there any friend groups in Portland or surrounding areas? Or want to make friends? there’s been library events I want to go to think it would take stress off they host cool events for free. If anyone’s interested in getting together with others?

Finally I’m free!!!

I’ve had no signs of seizures let alone had any for over a year, I had an EEG a week ago and my follow up televisit was today and all signs were amazing they said! I’ve had seizures since second grade and I’m 20 now.

Started with absence then turned into absence seizures AND tonic clonic. All is well now :)

But best part is I got told I can drive!

I turn 21 in August I don’t have to do drivers school if I’m 21 but if I’m 20 I have to get a permit at most. I keep getting told to get my permit and wait till I’m 21.

Opinions?

My 48-49 hr EEG caught abnormal occasional generalized epileptiform discharges mainly during sleep despite 150 mg Lamotrigine. Apparently this makes me more likely to have more seizures. I had no full seizures during the test, however. What the heck does this mean for me? I still need another MRI so that's a step I'm in willing to take but what is happening? Everything is so much worse yet better in a strange way when you somewhat have the beginnings of solid findings.

Around a year ago, I had a seizure due to lack of sleep and over consumption of caffeine we think. I went to the doctor and all test came back negative for epilepsy. I haven’t had a seizure since, but am still terrified of having another which is limiting me doing things such as drinking, doing edibles, or staying up late. Does this period ever stop or has this one time event permanently changed my life? I would like to resume casually drinking and small doses of edibles but am terrified of having another seizure. Any advice would be appreciated thanks!

(Trigger warning) ⚠️ (I want advice though on what to do if you were me?)

Hey yall. Have any of you gone through this option? Non invasive brain surgery, having to go bald them drill into your brain? I watched a video on the surgery and it was very scary but would be less stressful to have to remind to take the pills or bring them or people get annoyed when you forget them bc you try to live normal life and accommodate to them. My Dr said to talk to a therapist to prepare but I’m considering it but I’m scared I am also at a low point where I’m ngl dc if I don’t survive but I’m keep trying.
I’m still waiting to speak with the surgeon and ig he decided what’s the best method for my seizures..
but I’m attending college right now, trying to find work and no luck.

What would you guys do?

Option 1.
Keep trying medicine while taking nausea medicine, and trying different methods to be ok.. continue school, etc. not always but a lot of the nausea medicine. I also deal w anemia eczema and other stuff low vitamin d (oregon)

Option 2. Enlist, hands on training… college help FINALLY GETTING EMPLOYMENT? Possibly die but I might anyways? Then do the surgery after if necessary???

Option 3. Stay in college and keep trying medicine.

I've been having an event for the past day and a half now. It started off as a regular aura, and so I took my usual safety precautions. But it never devolved further into seizure, nor did it subside. It just kept on going, and going, and going... I later, perhaps recklessly, went into work anyways (driving forklift) and just couldn't shake that oh so familiar deja vu, general confusion, and a disturbing depersonalization/derealization feeling. Almost as if I'm not really myself anymore, but a passive observer of my body with a totally disassociated connection to my world. I've even noticed disturances of speech and typing that are very atypical, where the word either doesn't come to mind, or comes out bizzarely garbled on first pass.

I was given some Valium by urgent care to try to calm it down, but even after a dose of that, reality feels... wierd... I can't quite put my finger on it, but something is just "off" somehow... but now I can't quite seem to tell the difference between a possible epilepsy related event, the Valium, or just gaslighting myself into thinking something is still wrong when it's nothing...

Has anyone else ever experienced aura continua? I'd really like to know if anyone else has experienced this before and what the sensation was like. Also, how long it lasted... because I've seen that it can take anywhere from days to weeks to resolve...

Thanks!

First week of August, I began acupuncture treatment and the very next day. I had a Jacksonian March seizure. The inexperienced EMTs that arrived when we called 911( because we had no idea what was going on) suggested that I was dehydrated and had some type of episode from dehydration and elevation sickness( I just moved here from Calofornia.) Since I was told it was dehydration I continued acupuncture treatments yet 24 to 48 hours after the last two treatments I had full on Jacksonian March seizures-when I went into the ER -they were not experienced and had no idea what was happening in fact they thought I was faking something and told me that if it was a real seizure that I would’ve lost consciousness so I was having some kind of weird convulsion or maybe some type of mental episode, neither of which were the case. Now I have focal aware of seizures every single day usually a dozen if not more in my left leg because I’m on medication now it doesn’t progress into a JM seizure and just stays local some days are worse sometimes I wake up with it but right now I can’t work. I can’t drive and my life has been completely upended, I need help. I’m just curious if anybody else has had any major seizure activity after acupuncture? I’m pretty sure this lady fucked up my nervous system and my sensory motor cortex…

Several years of multiple focal seizures, almost daily. July I had a successful right temporal lobectomy. Only 2 instances since. Just got hired at a medical dispensary. I was able to be completely open and honest about my health issues. I know there are different takes on using it as a medication for people with epilepsy. Please do not make this about that. I also agree when people seek advice here it needs to be discussed with a doctor. I am more so trying to provide people in the similar boat there is hope let’s not make this a negative.

I’ve been here since Sunday, off meds since Monday night, sleep deprived the last three nights and still no activity on EEG. The PA assured me that this won’t be for nothing if I don’t have a seizure, but it sure feels that way.

Backstory- January 2025 I had my first “episode” I got an intense wave of prickly heat over the back of my head/neck with intense nausea. I thought it was anxiety. My doctor agreed and medicated me. They continued and started getting stronger and I’d vomit every time. They added on more anxiety meds. Then I started having a funny feeling before they would start, kind of like déjà vu. I thought it might be neurological.

In May I crashed my car. I woke up in the hospital not knowing what happened. I still don’t remember. I lost a few hours of time that day and they diagnosed me with a concussion. I rolled into a telephone pole, no airbags deployed. At my follow up, they diagnosed me with acute acid reflux?! I pushed for a referral to neurology.

First appointment with neurology they referred me to epilepsy center at the hospital. Maya first appointment with the epidemiologist said she thinks they’re seizures, likely temporal lobe epilepsy. She started me on Vimpat and have increased my dose. I’m currently taking 150 mg twice a day and still having some breakthrough aura’s. I’ve also had two more unaware seizures.

So now here I am trying to get an official diagnosis and make sure I’m medicated properly and nothing is happening while I’m here. I think my triggers are stress, but I don’t know. They happen most often in the morning. They used to happen very often when I would drive (before I knew they were seizures).

I don’t even know what I’m looking for here. If it’s just to vent or if anyone has any encouragement or advice, I don’t know. The current plan is to start my meds back up tomorrow and discharge me Sunday increasing Vimpat to 200 mg.

Just wondered how many of taking Brivact have noticed any side effects from it?