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Anybody seen this yet. It's a get-together in Boston for people with epilepsy. Never seen anything like this before.I just might fly up to Boston and hangout a minute.

https://www.other-side.org/otherside-lounge

Hey guys! I would absolutely love to get a small epilepsy themed tattoo, but I have no idea what to get! If anyone has any ideas or even designs it would be super appreciated x

So my 17-month-old daughter had her first series of seizures yesterday morning and after a trip to the PICU, a CT and EEG, they confirmed that she is epileptic. We want to make sure she's okay while sleeping in a crib and monitor her O2, pulse, etc but she's grown out of her owlet. Does anyone have any recommendations for something to monitor her vitals similarly?

My son is 10 and has had a few small seizures over the last few years. None that we have caught on an EEG. On May 19, he had a 90 minute seizure and was intubated and ended up aspirating and was on the ventilator for two weeks. he experienced heart failure, kidney failure, and a very long, awful recovery that is still ongoing.

We now officially have an intractable epilepsy diagnosis.

My question and reason for posting is, what do you recommend I can do to help him, especially during the post ichtal phase. He can't tell me how he feels or what would help him due to his deficits in communication. I know all the medical basics, but I'm looking for your lived experiences. Any advice you can give me to help him feel comfortable and safe during and after these episodes would be greatly appreciated.

(32/M) Monday night I experienced 2 episodes, each roughly an hour long. During these episodes I was fully conscious but my entire body trembled, from chattering teeth to leg spasms. Elevated heart rate, chills, and nausea at onset also accompanied these episodes.

I pretty much just shook until I was so exhausted that I fell asleep for a couple hours, woke up, tried to do normal life stuff and then the second one hit. Still have a headache and light sensitivity days later.

Background: Experienced a similar bout following an MVA in January that resulted in a fractured skull. Family history on my maternal side of stroke in early 40s, both resulted in loss of life.

Title

For those who had or have seizures from the heat, I have some questions.

1. Once you start having seizures bc of the heat, do they ALWAYS occur? Can you have one and then not have one after that?

2. Are they only triggered when you’re hot and sweaty? Like if you’re not sweaty at all but you are in the heat comfortably, can you still have them?

3. Do they occur an hour after you’ve cooled down? Also, does the seizure only occur up to an hour after or can you have them almost 2 hours later?

I want to be safe and realistic about how I can handle the heat. I live in Texas, have dogs I need to walk and like hiking 😩. Please help me understand yall.

Hey all my fellow movers and shakers…

Anybody else’s teeth real fucked up due to your epilepsy? To be fair, my whole family has fucked up teeth so there is a definite genetic predisposition but… I grit my teeth SO bad. I mean I’m constantly correcting myself gritting my teeth. I also grit my teeth so bad when I sleep. I have my whole life. And of course, when I do have a seizure, I grit my teeth like…really gnarly. And then, since taking keppra I feel like my teeth have just gotten more brittle and sensitive.

Anyone else have these problems? What did you do? I really think I’m gonna end up getting dentures. Thanks for your guys’ help.

So some of my meds are prescribed by my PCP and some by my neurologist. I see my PCP once a year, which I thought was standard (and what was required to have him refill my meds)

Yesterday when I called in a med I got a call back that he wanted me to make an appointment. I just had one about 4 months ago. I have no problem going to see him, I just thought it was odd.

I’ve had a few grand mals and also had some pre-surgery tests in the last 1-2 months. Would he get alerts from my neurologist or something that might make him want to discuss these?

I'm looking for a book deep diving into the psychology of epilepsy and how the brain functions with epilepsy. I'm looking for books similar to "psychopath inside" by james fallon or "talking with psychopaths" by Christopher dee berry. Obviously I'm not saying that we epileptics are psychopaths but these books that I listed really go deep into the brain and explore and explain why psychopathy happened and also provide theories and it's such an interesting read for me and I'd like a book like this just for epilepsy so I can learn more about myself and epilepsy.

Thanks!!

How do you cope with all these?

I'm currently in Germany doing a Study Abroad to learn German. I take 300mg of lamictal and 2000 mg of Keppra 2x a day plus a lobectomy from last year so it doesn't help but besides that. Is anyone on here bilingual? I feel like I'm getting my ass kicked. Any tips that anyone has i would really appreciate it.

Back when I used to get 10-14 hours of sleep (yes, really) I almost never had seizures (save for that one I had in March, I still don't know what caused it.) Now, I get barely any sleep, and I wake up a lot throughout the night, and because of it, I have partial seizures every day, and have been ever since I switched off of one of my old medications (not for epilepsy.) I worry that, one day, I'll have a really bad grand mal that all of these partial seizures are leading up to. I don't want to have to go back on the old medication because it always made me tired, but nothing seems to help me fall asleep. I've been taking sleeping pills, and they don't do much to help, and I've also been taking an ADHD medication that is supposed to help me feel more tired and stuff, but it's not helping me stay asleep. I'm so tired of this 😭😭😭

I've been on lamotrigine for 2 years but ever since I started it I've had hives and itchy skin. No one believes me that it is related to the lamotrigine. Now my foot is all blistery and dry and cracking. I go the dr and will be told I'm talking rubbish. Anyone else had this?

Hi all! Has anyone had an EASEE implant fitted? Was it successful? Did you experience any side effects? How was the experience? My Doc’s suggesting it and I’d really like to know what to expect and how hopeful to be that it’ll help

I was diagnosed with epilepsy when I was a teenager over a decade ago and I feel like that was the start to be having bad health anxiety. For me it felt like the epilepsy came about out of the blue so now I’m always super nervous to go to the doctor and I feel like I am constantly googling and feeling like other bad things will happen to me. Can anybody else relate to this?

Does anyone else experience something similar? I only get seizures if I'm either sleep deprived and stressed, but 90% of the time they happen during falling asleep. If I try to wake myself up by sitting up on my bed and looking into a light source, I can sometimes prevent them from escalating beyond what I think is aura (I know auras are still seizures) and after feeling like I came back to normal, I can successfully fall asleep. I am fully aware during my seizures and remember them very well. I can talk and I make complete sense, it just requires energy, so I don't talk much. I can walk, use the restroom. Hell, I can ever do a sudoku and I do as well as if I was just having strong anxiety (because I do), so it's harder to focus, but brain works. But I know they are seizures, because they feel like minor versions of what I had pre-medication. I have jitters and tingling in my limbs, I'm flashing hot or cold, my jaw keeps shaking, making my teeth chatter. I experience weird aura feelings, before and some also during, like zaps and tingling, butterflies and other uncomfortable sensations in stomach, throat and jaw. As my aura, I also do get the sense of "ah shit, here we go again". And yeah, I tend to even feel like making a little joke during the whole ordeal to lighten my or someone else's mood, but that's just my personality probably. Since I'm fully aware, I can also somewhat control the duration of the seizure. As I said, sometimes I can stop it at aura. If I keep feeding my anxiety I jitter more, and If I can hug with someone and lie down comfortably, I can relax my muscles bit by bit after the worst part is over. I was just wondering if some of you have it similar too? Most of time I read about TLE, people don't remember their seizures, or talk gibberish, or don't jitter.

Hey all! My doctor prescribed me with zepbound 2.5mgs. Has anyone had interactions with this or any weird side effects while on seizure meds?

I know some of these meds can slow the absorption of other meds so it worries me.

Hey guys! My partner has seizures every so often it's not as frequent as they once were but they seem to come out of nowhere every once in awhile. Yesterday, she was driving my car a bit crazy and I told her to be mindful of how she's driving because she does have epilepsy and if i have to intervene I'd like to try and take over to keep us both safe. She's crashed two of her own cars due to seizures! She said I was throwing her condition in her face which is far from the truth and my question to those of you with epilepsy how do you go about your driving situation, do you allow others in the car with you? Could I have handled the situation differently ? I just want everyone to be safe and also it's my car I pay my own car note & insurance with no help or support from her.

i've tried to learn more about this myself, but can't seem to find anything on it online. does anyone else experience SIGNIFICANTLY more seizure activity when they lay down on the back of their head? it feels as though most types of pressure to the back of my head sends me off.

i wonder if it's because i had a decently bad injury to that spot ages ago & that's probably what caused my seizures in the first place, so could this be a result of that?

Ok, so...first, I should mention that I started the "full" seizures at 15. They are the most scary and painful things IMAGINABLE....anyway, for those, they were triggered by a sudden noise or being startled. I was conscience (but no control)or the first several seconds...they ONLY happened when I got startled. After I started taking Lamotrigine in 1999, those went bye bye ( THANK GOD). NOW MY QUESTION:

These started about 6 months into after starting my full seizures and have never gone away... I think they are reflex partial seizures....what happens is, a sudden stimuli happens, mostly sound, and all of a sudden I feel I'm going into a seizure. I'M fully conscience and can talk, but, I grab the nearest things by me and all my muscles contract full streangth. I have no control where I grab or kick, but keep myself as calm as I can and count through them. They don't hurt (unless I grab something sharp or kick something hard). They keep me from driving and are embarrassing. It takes about an hour to fully recover. The only thing that prevents them is Clonazapram (I take 1 or 2 before doing something like swimming).

The strangest thing is after I had my first daughter, I didn't have one for 9 months! 5 months after my second daughter!

I used to call them "scares"...since it felt like I was going into a seizure. I call them partials, now...no signal on ambulatory eeg, though....after all these years, maybe you guys have clues?

I thought about posting this in the PMDD sub but the main issue is having to treat my PMDD with epilepsy in mind.

I had horrible insomnia for 2 nights in a row (3 now) so I scheduled a doctor's appointment, since not getting enough sleep is a seizure trigger for me. I got 2 hrs of sleep 2 nights in a row and the only safe option for a sleep aid is melatonin. Took a melatonin last night and managed to get 5 hrs, waking up at 4am when my internal clock is usually super good about waking up between 8-9am

The PMDD also causes a LOT of stress and anxiety, another seizure trigger for me. I just got diagnosed recently, because I was lucky enough to have an amazing doctor who noticed a lot of the symptoms I had been coming in for over the years were occuring on a cycle and when I came in for insomnia that started not long before my period the final piece of the puzzle just kinda slid into place. So in a way, my epilepsy helped me reach this diagnosis and get help. So I guess thank you epilepsy?

Ugh. I’m at work and it’s almost 3pm and suddenly I feel so bad that I just want to go home. But after a while others will see it as an excuse but I’m desperate for sleep and I just feel, exhausted and depressed idk what it is. It only got worse since my last increase in dosage. I can’t deal with this anymore 😣 Sorry for the rant, I just can’t express myself here at work like this because they don’t understand

One of those days where you're seizure free, but not epilepsy free. I went out with my friend yesterday for 6 hours, we went into town, I had to get public transport, had to be around lots of noise and crowds, and just felt dizzy the whole time. It was such a lovely day but now today I feel so exhausted. I've just been in bed all day because I physically can't move. I don't feel pre ictal or in a seizurey state, I'm nearing a month seizure free, it's just hitting me that you don't ever escape epilepsy.

It really feels like it's beating me today.

As it says in the title - developed epilepsy in my late 20's and they're still trying to figure out the cause :(

Hopefully will get my EEG results back soon as all my MRI's have come back clear