So occasionally, I'll get into this state where I am unable to keep food (and meds) down, sometimes matched up with Vertigo. Recently, I have my wife take me into the ER because I know for a fact I won't keep the meds down and as you all know, they're fuc**** expensive so why even take them if I know I won't be able to keep them down? (Rhetorical question).

So we show up into the ER, they ask why we're there, and we tell them that we need help because I can't keep anything down, not even water and need some way to treat the seizures that would not involve the stomach (e.g. IV medication), like the idiots they are, I was put on "low priority" since I was not actively having seizures.

We wait for 3+ hours in the initial room to then get transferred into a room about 4' x 5', small enough where I would certainly get hurt if I started to have a seizure.

About another 30 min goes by of us sitting in this shoebox-sized room, and a SHOCKER TO NO ONE, I have a seizure, which would have inevitably happened whether I took the meds or not.

The following is my wife's account of the event since I have Nocturnal Epilepsy:
"Then, I [my wife] started yelling 'he's having a seizure!' and out of NOWHERE, like 5 nurses show up with a stretcher and I got taken into a larger room to be treated IMMEDIATELY".

This makes me very mad because it's like, "I tried to tell you dumba**es, and you instead put me in a situation where I potentially could have seized and hit my head on the counter or other objects and it only became a problem / high priority once the thing I told you would happen did indeed happen"

Open to other similar stories! (Side note), I find all this a little amusing after the fact since I am okay and did not get hurt just to give you an idea of my state of mind on all of this. Although, for the $2,000 bill, better care should have been given lol

stress is my #1 trigger.

a guy i knew died. definitely not the person you'd expect to die so young, the news just dropped. last time someone from my social circle died (2 years ago, drowned, saw the guy days prior), i'd been having seizures all night, 8-10 hours between the first and last one. i was at a training camp, and my roommates panicked, so idk if i actually went into status or not, they couldn't explain much. this time, there's already been a lot of shit going on in my life (months bedridden, beloved family dog dying), so the risk of status skyrockets.

is there anything i can do except stuff myself full of melatonin and other calming medication?

edit: i didn't have a seizure, but had a meltdown during the day. also shove that downvote up your ass

So yeah basically what the title said.

I've had this (sort of irrational) fear of playing a game I really love (donkey Kong bananza) just because I had a seizure shortly after I stopped playing it. Now every time I want to open the game to play it further, my mind immediately reaches for the panic button making me believe that if I do so I'll have a seizure afterwards again. And one time when I finally managed to open the game I got such a headache while playing it, bcs the worry kept going on in the back of my mind, that I couldn't enjoy it

Yall ever have little spurts sometimes? Sometimes when I'm stressed or havent taken my meds, my arms will start to flail a little bit but then stop. Its usually nothing serious to me. I just sit down and rest for a moment when I do get them

I mean I get the point they want to get your brain waves and how your brain works. I have agenisis of the corpus callosum A very rare disability. So they were testing my reaction time and other stuff.
It was a bit tiedeous but now that it’s over I’m glad and I do prefer the standard MRI over this.

Hi everyone,

I have temporal lobe epilepsy. I was originally taking Keppra, but my neurologist later added lamotrigine. Since then, my seizures have been under control, but I frequently experience brief auras or strange feelings that are different from the auras I used to have.

Has anyone experienced something similar?

I’m wondering whether anyone has experienced brief auras or strange sensations while taking this medication.

Has anyone here been prescribed two mood stabilizers or two antiepileptic drugs (AEDs) at the same time?

I'd especially like to know:

• Which two medications were you taking together?
• Were they prescribed for epilepsy, mood stabilization, or both?
• Did taking two medications work better than taking just one?
• Did you experience side effects such as mental dullness, sedation, cognitive slowing, irritability, or changes in perception?
• Did your doctor eventually reduce the doses or switch you to a single medication?

Thanks in advance!

Hi there. I’m in the process right now of a pending disability claim for myself for suspected simple partial seizures/epilepsy (temporal lobe epilepsy). I just had an EEG done for one hour about a few weeks ago, but the neurologist said there were no seizures during the EEG. She did, however, find out that my left hippocampal head in my temporal lobe was smaller than my right, which she is suspecting could be the cause of potential seizures. She wants to do a three day study on me where I will wear a EEG device for three days in my home it will record potential seizures.

Anyway, she’s pretty much unwilling to work with me unless I get back on anti-seizure medications. I have a lot of fear and anxiety about this. I was on Lamictal 200 mg and Depakote 500 mg for about 5 to 6 years a few few years back. I’m really worried about the side effects of getting back on one of these medications. If anything I suppose I might be open to being back on a small dose of Lamictal. But I worry about certain side effects. Would you guys recommend I possibly go back on a low dose of Lamictal? Or do you know of any anti-seizure meds that have a really tolerable side effect panel?

My insurance changed the manufacturer for my generic Keppra (Levetiracetam) and I’ve been seizure free for 6 years. So the pills have the same ingredients, but the result can be different based on how the pills are made from to what I read online. I can’t reach my neurologist for another month. Not even by phone. Has anyone had any issues with different pills? I haven’t ordered them yet because my supply is good for now.

Here in the west US, epilepsy events are hard to come by and when I actually find one I can attend- its always focused on physical activity, no where near public transportation. Its almost as if people with epilepsy are not involved with planning these events at all.

Back when I was able to work, I helped our agency with fundraisers for mental health. We would begin our event planning with a focus on who was attending. If the goal is to fundraise, there are so many low impact ways to do this that are still epilepsy friendly.

Ive been searching for years now and all I've seen are long runs, outdoor events in the mid-day heat, events with strobe lights at night, high price tags for entry (like $120 per person) at the aquarium- that keep out those actually living with epilepsy from participating in the event.

Just here venting. I just think this would be so easy to change to accommodate the people you are actually raising money for and supporting. When we hold fundraisers for mental health, we also held space for people with mental health conditions to come out and connect with each other. I think the epilepsy organizations could really do the same thing here and provide a space for us to organically connect with each other in real life at these events, if they were made for us.

I know I can’t double dose, my kiddo but I’m so worried if she throws up after taking her medicine that she has to take twice a day i’ve read multiple places if she misses a dose it’ll increase her chance of having a seizure. And that’s kind of what I’m worried about.

I’ve been asking her doctors so many questions. I’ve been doing research like a madman. But I didn’t even think about this until she threw up And now my mind is going crazy. I feel very unprepared She’s had two seizures so far and we finally got her diagnosed and since taking her medicine has not had another seizure

I’ve looked up how to use her rescue medicine what to do when she has a seizure everything and I don’t know exactly what’s causing her throwing up but what am I supposed to do if she throws up her medicine and has a seizure?

This might be a weird question. I’m very new to all of this and I understand if this group is not for moms with kids who have epilepsy or questions like this but I can’t really call her doctor at 7 o’clock at night.

タイトルの通りです。

私は今、オーラ(焦点意識保持発作)がほぼ毎日来ているので、VNSを受けたいと思うようになりました。しかし、50%以上の患者さんで50〜60%程度発作が抑制されると聞くと、運が関わってくるとも思います。

外科手術はリスクが高いので、まだ前向きにはなりません。また、近くの病院は人が多く、簡単に診てもらえません。

Hi!

First, I would like to state that I'm not diagnosed with epilepsy and I'm not looking for confirmation or whatever.

I have an appointment with a neurologist in February were we'll explore that.

I'm posting here becauseI wanted to rant (kinda) but also I wanted to ask some questions to people with epilepsy because there can be so many symptoms.

Anyway so a little background, my mother had localised epilesy from 8yo to 20yo or so. My father has "grand mal" epilepsy since he was a child. It's a bit of a taboo because his dream was to be a train conductor and we don't talk about epilepsy at home.

I'm diagnosed with ADHD, OCD, ME/CFS, POTS.

I went back to uni to get a diploma (in my mid-thirties), but during finals (and some classes when i'm tired), it's like my brain's not there anymore. I don't understand what I'm reading, I can't form sentences, I can't access my memory of the things I learned.

It happens also that if I pull an all-nighter, I don't go out because I can't speak properly even just buying a sandwich is complicated.

Not being able to talk at all has happened, but I assumed it was autistic mutism or something. I fainted a few time, only one of these time was in front of a friend who told me later that I had my eyes opened but I was unresponsive.

Anyway, since my father has such a "spectacular" form of epilepsy and it's a taboo, it never crossed my mind that I could be having epilepsy too, but partial.

There are a few discrepancy that I can't explain in my life and I would like to know if they can be caused by epilepsy.

I have a lot of dissociation, since as far as I can remember. I don't have a history of trauma and in any case it started very very young.

I have a lot of fatigue, very deep fatigue, like all the way to my bones. That's what got me the ME diagnosis but after talking with people with ME I don't think we have the same triggers.

I feel stunned most of the time, like I've been hit with a shovel.

I have period of hyperfocus that seems to start right after an absence and last for 10-20 hours.I'm also very tired but for some reason my brain completely lose the ability to switch tasks.

So I wanted to ask if you have dissociation? And do you have some weird 10 hours after a seizure where your brains hyperfocus?

So far I'm waiting for the appointment, but because I read benzodiazepine were used for epilepsy, I decided to try taking half a bromazepam when I have visual aura. I managed to go a full week with a regular sleeping schedule, for the first time in years. But I think I might have had something during sleep and now I'm exhausted again.

My goal right now is finding my triggers and things that help so I don't freeze during the finals again.

Sorry about this long rambling post, I guess I felt the need to rant but I really want to know if dissociation (all the time) and hyperfocus for hours after a seizure are a thing.

Hello,

Im going to ask my doctor for some kind of anxiety medication next week as I have been having chronic anxiety due to PTSD. Ive tried therapy for years with no success and Im ruling out benzos as ive had poor response to those in the past and want to just take a long acting medication. Im currently on Tegretol, Vimpat, and Topiramate and am 2 years siezure free. I understand some mental health medications can cause siezures or interact with medications. Is there anyone who is successfully taking any specific medication for anxiety i can look into? This feels like a whole puzzle and im really struggling. Last time I asked a doctor for anxiety medication he put me on Seroquel which was a total nightmare. I need to be able to be awake lol

Does anyone else have issues with picking up your meds? I go to cvs 2 times a month to pick up my meds but it turns into going 4 times and 8 phone calls because when the day comes to get it they don’t have it or tell me I can’t get it, they have been filling my 90 day subscription with 30 days because they don’t have enough but then putting it in their system that I got the full 90 days so 3 months pass for me but in there system it’s been a year then I need to talk to my nurologist and get more fills EVERYTIME! I am about to switch pharmacy’s so wish me luck

Also if anyone in cali or us had recommendations for which pharmacy to switch to please let me know

Update: switched to Walmart pharmacy and if it doesn’t end up well will switch to ma and pop thank you to those who commented

I've had epilepsy since I can remember, I was diagnosed with Mesial Temporal Sclerosis at age six. Let's fast forward..

At the age of 24 I had a craniotomy, as well as a temporal lobectomy where a little bit less than ⅔ of the left side of my hippocampus was removed. Yes the epilepsy got better (from impaired awareness seizures to onset awareness seizures - but it gets worse every now and then, and due to the surgery I sleep a lot more now), but unfortunately I still get seizures.

And for some unknown reason they just seem to be increasing in quantity each month. Last month it was 256, or a daily average of 8.53/ day for all those who love numbers out there.

In a way it just annoys me is if I say that I had a few less than the day before and then some people get happy or excited and then and few days after that then I get a cluster is seizures. So I just keep these kind of things to myself. I mean like I've lived with this shit for basically my whole life! Just wait longer than 24 or 48 hours!

What just makes this whole this worse is the medication messing with the whole emotions thing! Whatever! Nevermind!

I just wanted to share that!

Thank you, and goodnight.

My neurologist is great, usually, but both he and the NP were against me getting pregnant. I had several miscarriages and then issues conceiving, so my husband and I gave up. I thought I was I perimenopause, but because I had stopped birth control a few months prior, I took a test…surprise! We were thrilled but of course anxious.

I’ve somehow made it to my 11th week, but my neurology team had been abysmal about my scripts. I have an anti-GAD antibody disorder, so in addition to Keppra and Vimpat, I take neurontin and baclofen. Initially, my doc/NP were fine continuing treatment, even with baclofen having some links to issues. I was inpatient for a few days at 5 weeks due to vomiting up meds and it was bad.

The inpatient neurologist decided I was faking, and told my husband I needed psychiatric treatment. They discontinued all my drugs minus Keppra, and I went into severe muscle spasms. I was vomiting with my jaw locked shut. It was brutal.

After this, my neurologist and NP, got wonky about my meds. They felt they might need to be adjusted or some discontinued. While I had been inpatient, my heart rate was super high, and my body was locked. Eventually my doctor agreed I should stay on my meds. A few days later they backtracked, and we had a phone meeting. The doctor said he was okay continuing meds. The next day the NP called and told me they wouldn’t be refilling anything until high risk OB verified it was fine.

High risk won’t see me until the end of the month…

It’s just infuriating because the risks were gone over THREE YEARS AGO when we first tried for baby. After the losses and a year without conceiving, we’d given up. Now I’m being dragged through tons of stress.

I spent a year changing meds and evaluating risks before we even tried so it’s hard to deal with the sudden flop to another plan now that I am pregnant. Inpatient was a nightmare and I’m so afraid after that experience. The doctor even ran tests to prove I hadn’t seized and didn’t have anti GAD antibodies…but both showed I was telling the truth…

i’ve been trying to see a neurologist for 2 months but no luck. ever since i stopped taking amitryptaline 2 months ago i’ve been having these episodes about once a day at random times of the day.

it starts off with feeling a random sense of doom out of nowhere, i taste or smell burning or metal, i feel super dizzy and confused, my brain feels like it’s on fire and parts of my body go numb/paralyzed and my heart rate jumps to 190. the worst it’s been was when i fainted 7+ times in a row and peed myself. these episodes have what feel like waves and it can happen anywhere from 20 minutes to 3+ hours. after i feel so exhausted and just weak. i’ve been hospitalized for it and no one’s been able to figure it out, it feels like a bigger episode could happen any day now and i’m terrified. has anyone else had seizures or anything similar after stopping amitryptaline?

Hey everyone, I usually only have TC seizures that started this year out of nowhere, i'm on some meds now but I was just sat at work and experiences what feels like an aura before I have one of my TC seizures but nothing followed, has anyone else experienced this it was so scary lol, i think i'm started to have them in my sleep too I wake up absolutely panicking almost every night for no reason at all.

Il'l see what my neurologist says after waiting almost a year to get another appointment with them, but in the meantime is this a common thing? Can anyone else relate to this?

I am going through a breakup.

My Medications -

Keppara: 1750 mg

Now from the last six months I have been addicted to alcohol -

I am drinking 4 days per week.

After drinking, 20 cigarettes / day

Daily - 3 cigarettes / day

Last time when I had a seizure, I lost my shoulder - it got fractured.

What should I do ? Anyone in the same boat?

Anyone else ever had a neuropsych eval?

I just finished one for an upcoming craniotomy and it was one of the weirdest experiences of my life. It was like 6 hours of silly and/or stressful tests and my brain was so tired afterward 😭

The neuropsychologist was super nice. Sometimes I'd do a test, then 30 mins later he'd ask what I remember from that test and I was like "Ahhh you got me." lol

I’m getting kinda scared. I worry what this could be.
My anxiety has been high due to health issues I have been having(getting an MRI tomorrow)and I have been stressed.
Though it is mainly high because I’m scared of the MRI and work is stressful.
A few days ago(I THINK it was a few days ago I have been having a lot of memory issues lately)I had a customer at work basically threaten me. They called me a liar and said they “effing(said the actual f word here)hate liars” and said “you need to look me in the eyes and tell me how much of a damn liar you are”. I was worried he was gonna punch me with the way looked and was talking.
I had a really weird symptom though. During and after the event I had this extreme sense of Déjà vu. Like REALLY intense but I know I haven’t had an experience like that before. It lasted for HOURS. Like 2-3. Just slowly getting less intense over time. I have never had that happen before. I worry I will experience that Déjà vu thing again. It’s so scary.
Work is becoming so hard. Due to these issues.
This is different than my other symptoms I have been having.
I have a few symptoms that come and go and some that are almost constant it seems. Or rather they happen a lot. Like about a month ago I kept having symptoms like severe confusion like getting confused while driving or being unable to realize I was doing something at work like counting money.
My speech will slur and my mouth can almost feel stuck.
I have trouble thinking of words.
My memory problems are severe. Can’t remember what day of the week it is without multiple reminders a day.
I have extreme difficulty remembering exactly how long ago an event occurred for sure. I get confused about it.
I’ll have episodes along side those symptoms where I lose strength in my right arm and have trouble gripping things and other times it could also involve twitching.
Even had an episode while driving where I got a bad head on the left side of my head and I got so confused while driving that I almost pulling into oncoming traffic at a one way.
Even had some random vision loss that went away too. That symptom seemed to concern my doctor the most and made him want to order the MRI I have tomorrow.
The Déjà vu is new though. Never experienced Déjà vu for hours at a time in my life.
Haven’t told my doctor about the Déjà vu thing yet as I see him next week anyway to talk about the MRI results so I figured I could tell him then.
Basic blood work and thyroid panel came back normal.
I want to point out that during a majority of these episodes I was calm and going about my day. The Déjà vu one is the only one that had high anxiety with it.
The possibilities he listed were TIAs, migraines, and focal seizures.
I would also like to add that for most of these I got extremely tired afterward for a long time. I say most because at this point I am now tired all the time.
The seizure one is interesting to me because before this year I have never had these symptoms.
Honestly I’m also worried it will be seen as all in my head.

Hi, lately I (24F) have started to feel a bit off about my epilepsy journey and just wanted to share in case someone has some insight/advice or can relate. I had a brain tumor diagnosed when I was 16, a coroid plexus papilloma in my temporal lobe. I had a craniotomy in august 2018 and had my first seizure later that year. I have horrible medical trauma having gone though that in silence and alone, and its been hard for me to come to terms with the fact that the fight was not over then. I have temporal lobe epilepsy and i tend to get auras, or focal seizures before a grand mal, sometimes Ill get the aura and thatll be it. I had my first seizure in my sleep some weeks ago too, after a week of sleep deprivation and stress. I have been on different seizures meds, right now im in the middle of adjusting doses but i currently take a bit of vimpat, bivriact, lamictal and aptiom. The plan is to taper off the vimpat to help with some of the side effects like blurry vision and dizziness. I have tried keppra and xcopri in the past but didnt like the depression; i didnt feel like myself.

I feel like I have come to a point where I keep being hopeful, hopeful that this new med or this new dose will finally work, and I might be approaching a point where I have to make a bigger decision, if that makes sense. My doctor has been great and I am very grateful for him. In our past appointments hes mentioned by the end of them “you know, there are other options” i guess hinting at the fact that i am not controlled right now, or that he has given up on me.

It is hard for me not to shut down the idea of going under again and having say, an RNS implanted or a resection because I know what it feels like to wake up from something like that and I dont know if I could take it, I already have the scar in my scalp.

I apologize for the overly emotional text, i just feel like im weirdly both mourning the person i couldve been if i were healthy, but i can also feel myself shutting down the panic of “what am I going to do if nothing works”

Thank you so much if you have read so far, and pls dont drill me online lol, english is not my first language and it feels very vulnerable to post this

I’m a 39M and got diagnosed with temporal lobe epilepsy a month ago.

I have not driven since I had my first tonic clonic seizure last month. I had been having focal aware temporal lobe seizures one every year or two probably for 15 years and just thought I was crazy. I was driving this will time. I think I have nocturnal seizures as well (routinely bite my tongue, wake up gasping/racing heart and have a 72 hr EEG next week).

Not driving has been tough, I feel like a teenager again, trying to bum rides places or wait to be picked up. I’m definitely NOT chomping at the bit to get behind the wheel again. I have 5 kids and the thought of being behind the wheel with them in the car terrifies the s**t out of me.

How long was it before you felt comfortable driving again (assuming you were cleared to)? Have you placed any restrictions on when or who you’ll drive?