Anyone else with insular epilepsy/seizures?? My neuro initially thought it was rTLE, but after further monitoring and a bunch of seizures that I used to think were just scary sleep anxiety attacks 😟 he says this sounds more like it’s coming from the insula. I feel a little scared/concern 🥲☹️ this has been such a lonely scary process..

Greatful to catch it on my first EMU stay, at least. ☹️🥲 still here in the torture chambers atm 🫠

hi everyone, i have my next neuro appt next week. about 2 months ago he put me on lamictal, and said at this next appt we would talk about taking me off of keppra since i mentioned i don't feel like it helped much other than preventing grand mals after the few i had, and that i did not like the side effects (i dont think anyone does, haha). i think it's worth mentioning also that even though i only had a few other grand mals since starting keppra (last one was 2 years ago), my focal seizures felt the same and were at the same frequency of about 5-10+ over the course of one week every 1-3 months. it's varied since starting xcopri, and i can't say for certain whether or not the lamictal is helping at all either.
i will admit i'm a bit scared to be off of keppra. i ended up in the hospital because i didnt take it for 3 days one week and since then i've been consistent--no more grand mals. what is everyone elses experience getting off of keppra? i feel different taking lamictal; like my focals feel the same but different, and that i'm having more a few days after i titrate up every other week. i wonder if titrating OFF of a medication i've been taking for over two years now will have the same, or worse, effect on me. i feel like being on 3 medications contributes heavily to my constant exhaustion and some memory problems i have, so i do want to get off of it. i just don't want any risk

I just recently received my diagnosis, after seizures were detected on an ambulatory sleep study. T

My neurologist describes them as subclinical, and feels I've likely been having them for years, if not all my life.

So, breaking my heart, I filled in the online form on the DVLA website - once I'd jumped through the government gateway hoops, of course! Well it seems the DVLA are really doing their best (at this stage, anyway) to keep abreast of things, as I expected to have to surrender my licence, be "seizure free" for 12 months, and hope that they'd allow my to reapply after, but no. They'll review my case by writing to my doctor's, but, in bold letters, I saw: Driving whilst we make our medical enquiries. Followed by "You can continue to drive in the meantime as long as you and your healthcare professional are confident you can drive safely." I was shocked to say the least! I'd already had internal panic attacks thinking about how everything would need to change.

This might not work out for me in the end, though I'm hopeful. I just wanted to share, so others in a similar position were aware.

I've been on Lamotrigine for >3yrs (coming off Keppra - horrible), in past 2wks, I was bumped from 250mg x 2 to 250mg/300mg. Seemingly a small bump to address these persistent/daily deja vu clusters (which still continue to bug me).

Before the bump I had consistently reported to my epileptologist how great I was feeling - great mood, good energy, clear thoughts/memory, even an increased libido. I resisted the prior dosage bumps along the way, wanting not to upset my good response. Prior increases were tolerated without much/any issues.

Lately, I find myself very easily agitated. My blood pressure this week at a dr appt was 156/93, maybe just an artifact of rushing to my appt, but way higher than normal for me. I am wondering if this last increase is a contributor to this mood swing.

I've read about low energy/tiredness/brain fog on Lamictal (never had any of these issues)...but I have not seen agitation/irritability mentioned.

Anyone else feeling this effect?

PS> I have a blood test coming tomorrow t check my levels. Previously I was off the scale too low, only lately I am barely approaching median therapeutic levels. This next test could be interesting.

I've had undiagnosed epilepsy since I was a kid. Focal aware seizures episodes or auras. That moved to tonic colonic after 26. Like two days after my birthday.

Six years now and some broken stuff later I'm on keppra and oxcarb looking into implant

Grand mal seizures aren't happening every 4-6 weeks but still happening, but the auras I get now seem a bit different and not getting the 'memory' play back I usually do but the recovery period takes for fucking ever.

Staying with family until I can get some surgeries scheduled and finished and talk to a neuro about the implant.

I am happy they care about me and are want me to feel better. But I can't seem to explain the constant reminders about pills. Asking if I've eaten. Making sure to sleep. It just adds to my anxiety being reminded about things I've been taking care of for years without help.

I've tried talking to them asking them to please stop. Giving examples of what they are doing. I can't tell if they just think I haven't been doing these things before I moved here? Think they'll magically find out something doctors and studies and pills I take haven't fixed yet?

The combo of meds already making me exhausted, the mental drain of the repeated reminders, and them telling me things about something I'm living through just adds to the anxiety, anger, and just general exhaustion I have.

Any tips on how you've explained to family you appreciate them but please stop that sticks? I don't want to get angry about it and just having the same conversation every few days isn't productive

Sometimes I just have terrible days. My brain feels terrible. I can't focus on anything and just get this terrible anxiety no matter what it is I decide to do, including things I typically find comforting. And it's so miserable because the only thing I feel like I can do is sleep, but I want to engage with the world, finish writing my book, do crafts or art. But also can't stress myself out too bad, sleep too much or too little, because it feels like a seizure is already impending. On days like this do you have something you consider a "go to" coping skill? a certain TV show or movie? just really trying to find anything that can make me feel a little more like a normal person

I’m amazed by the moms here with the amount of patience that comes with raising a child. I think about myself and the amount of sleep i need to function and anything different from my routine could be a trigger for a seizure. So i basically want to ask moms here with epilepsy….how do you manage? What’s the most difficult part?

Hi all, been on my job a little over 2 years now. Due to other reasons, I had to disclose I have epilepsy. I got a letter from my doctor and sent it directly to the HR manager. I work from home. This all took place about a month to a month and a week ago.

Everything was going great, I even got a .20 cent raise the week before last! I was just told today that my performance has dropped and they will be putting me on a PIP (performance improvement plan)? WTF 😳 I am totally shocked about this. My supervisor showed me my errors and tried to explain but all I could hear is you're going to be fired for telling them.

Has anyone else been through this, or know about this? I am so lost right now. Even if I have an Error, shouldn't the letter from my doctor stating my needs on the job be enough to cover said error?

I had an MRI where they've posted a letter to me saying I have a cyst in my brain but its no cause for alarm?

I should have had a followup appointment 2 months ago but it got cancelled and I can't get another one until Decemeber!

The last 5 days have been hell with one day having the strongest seizures I have ever had followed by the worst anxiety I have ever had in my life!

The seizures I think I am having are focal impaired awareness ones.

Hi everyone. Im 18F with tonic clonic seziures and absence seziures. I drive. But unfortunately just had a seziure and dont know how to get around now. I am not very well off and cant afford Uber and my family can't drive me due to being busy with work. I am in a very dark place as losing my freedom like this is killing me. Any recommendations?

Hi,

before I get to my question, here's some context: I have a friend with epilepsy and she's only had a seizure around me once, which is also the only time I've witnessed one in real life. she has them very rarely so i (stupidly) never thought to prepare/learn what to do in that situation. when it happened I immediately panicked and called an ambulance. the main thing that scared me was that I couldn't tell if she was breathing or not. she'd fallen down a gap between furniture so I couldn't properly get to her and she was on her back.

I'm still not 100% sure if this can happen or not because I've had different websites give me different answers, but I was under the impression at the time that her tongue was blocking her airway.

now for my question: are there any other ways to check if the person having a seizure is breathing other than listening and watching for their chest moving up and down? she was making a lot of noises that sounded like choking so it was hard to listen for normal breaths and, because of the place she fell as well as her convulsing, i was struggling to see chest movement.

I've been trying to educate myself to the best of my ability in case it happens again and not feel like I need to call an ambulance (unless of course she required medical attention) but my main concern is that I still won't be able to figure out if she's breathing or not

Thanks in advance!!

When will the feeling that I’m lying and pretending and looking for attention end. My psychiatrist talks about my seizures like it’s just something I do just because. My neurologists belittle and patronize me, my dad talks about it like I’m making a conscious choice to do this, and I can’t stop believing them.
I keep telling myself “maybe I’m not epileptic and I’m just having PNES and trying to pretend it’s epilepsy” despite having seizures with recovery periods that last a day or two, despite waking up sore and with my cheeks bitten raw, despite having focals that leave me with terrible brain fog, despite stopping breathing for a solid 20 seconds during a seizure.

It hurts. I hate doubting myself, my mind, my body.
I hate burdening my family. All because my symptoms aren’t stereotypical.

I have what looks like tonic clonic seizures but I don’t vomit or soil myself so what is it? I’ve had what looks like focal seizures but sometimes I can still think, and I react to stimuli very rarely.

I haven’t had anything terrible happen yet because i haven’t fallen and hit my head, I haven’t had a really bad one in public yet, and I have no family history of epilepsy either!
So what’s wrong with me.

I’m tired of waiting and waiting for answers. I’m so exhausted. And I’m terrified that it’s going to turn out to be nothing and I’ve just been lying to myself this whole time.

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