my boyfriend broke up with my last night bc of my epilepsy. we’ve been together 5 years and i’ve had seizures monthly for almost 3 years now. he’s been amazing at taking care of me so i didn’t see this coming AT ALL. he recently said he wanted us to have some space apart to grow bc we met so young but that didn’t make a lot of sense to me so i pushed it and last night he said “he’s wondered what life would be like with someone healthy” so im totally crushed

but also i thought a relationship would only work with someone who knew/ loved you before seeing a seizures so now im FREAKING OUT. has anyone had success dating while having frequent seizures or am i right that why would someone volunteer for this???

not having a pity party just like genuinely why would you go on a date past the one where i told you i had epilepsy??? and wouldn’t it be super fucked up to wait until we’re in deep to tell you i have epilepsy??

I've never really used reddit before, it popped up while I was looking more into epilepsy and I cant say enough how thankful I am that I found people going through the same thing as me. I've lost friends, relationships and memories to this condition and I'm just so glad to see there is actually people who care. I've been epileptic for almost 3 years now, im a 34 year old guy and i never in my life thought id be where I am now. I'm on a cocktail of 150mg Briviact 2x a day, 200mg vimpat 2x a day, 5mg Onfi and recently started titrating Xcopri and am at 50mg currently working up to 200mg. the Xcopri has been a real tough one for me these past 2 months to the point where I sometimes even wish the SUDEP would just take me. Especially with slowly stopping smoking weed, the dreams and nightmares have been insane. I havent had REM sleep in probably 15 years and its definitely a big change to me. Nobody i know IRL has this condition and truly doesnt understand how life changing it is. at first they thought it was PNES until i was in a 3 day EMU and i had a grand mal right in front of my neurologist (sadly before they hooked me up to the EEG) and she confirmed I do have drug resistant multi temporal epilepsy. It was truly a huge relief finding out SOMETHING more than "its all in your head". I work full time in a busy, corporate bodyshop (luckily with awesome health insurance) as a master technician in a lead tech role and they have been super accommodating to my issue luckily. They even went as far as to change out the whole filtration system in the shop just to be sure it isn't the fumes interfering with my epilepsy. Between all the falls, concussions and blood spilled at work, they seem to understand and I'm truly blessed to work in a shop full of such amazing guys/gals. Even my priest has been able to come to my house to give me The Sacrament and confession (born and raised Greek Orthodox, 1st generation American). All of this has truly changed my perspective on the healthcare system and the work that needs to be done in the US despite being conservative (but NEVER was or will be MAGA). I'm so grateful for everyone who has made threads in here cause they have helped me so much the short time I've been here, it truly brought me to tears. Epilepsy has shown me the worst, but also the best of people. Sorry for the rambling and ranting. God bless you all and lets hope one day this condition is cured.

I am so bitter and angry and aggressive towards everyone I love🤣🤣🤣🤣🤣🤣🤣🤣 I don’t feel like the same person anymore🤣🤣🤣🤣🤣🤣🤣🤣🤣🤣🤣🤣🤣 I can’t stand seeing people being able to do the things I no longer can it makes me want to vomit🤣🤣🤣🤣🤣🤣🤣🤣🤣🤣🤣🤣🤣 and nobody wants to be around me at all because of the potential “risks” 🤣🤣🤣🤣🤣🤣🤣🤣🤣🤣🤣🤣🤣🤣

It’s like $1,200 a month. How can any regular person afford that? Am I supposed to just stop taking it? It’s the first medication that’s actually worked 😒

Maybe it was something about how seizures affected everyday life, the uncertainty around them, changes to routines, driving, work, relationships, or simply how much there was to learn about the condition.

Was there something you wish someone had explained to you earlier?

For anyone living with epilepsy or supporting someone who is, we'd love to hear what surprised you most.

i want to cry. i was having so many absence seizures and auras, and a few myoclonics, and i pressed the button after they happened (this was an ambulatory eeg), but i guess according to my neurologist it wasn’t brain activity and was just stress related even though im diagnosed with epilepsy!!! i want to cry

I’m a 21 year old female that’s just recently within the last few months have been experiencing episodes ( that I have been referring to as seizures) where I will get a huge wave of exhaustion, nausea and fatigue. My heart rate will slow, my breathing becomes hard and labored. I will slump and twitch/shake all over, face twitching especially… So much so I will get cluster headaches right after. While in it my insides feel hot and uncomfortable, and I am confused and violent after being brought out of it. While in these episodes I cannot move any part of myself other than maybe a hand or a finger, I cannot speak and I will grunt, gargle and groan. I have not had an accident on myself nor foaming at mouth, just drool. These episodes can range from 30 seconds to up to 10 mins sometimes even longer, I can feel myself get weaker and getting close to one as well, I blank and lose energy to speak. Doctors near me say there is nothing wrong and I’ve been sent in ambulance already, but I know my body and I know this isn’t me. Please help any idea and insight about what this is, is appreciated. (No new life style changes or medications)

.. today has been horrible, I get incredibly sick with them and fight them off all day.. can’t even go out anymore it’s ruining my life please help.

I (F27) take 200mg of lacosamide twice a day, I also take 75mg of levothyroxine in the morning bc of my thyroid. I work from home and usually take a nap from 12-1 on my lunch. Lately I’ve been not waking up and sleeping for 2-5 hours and then sleeping 8+ hours the same night, no problem. My boyfriend is starting to get mad at me because I sleep so often and so heavy I forget to let the dogs out when he’s not home. My dr says fatigue is normal but this seems like more than that. Idk what to do at this point.

Who else takes 3,000 mg Keppra ER(my doctor just raised it to this) and 450mg Lamictal ER and .5mg Klonopin? All after a hospital visit.

I still have breakthroughs. Sometimes just once, and now almost daily.

Are there other drugs that treat this kind of epilepsy? Most medications out there are for more complicated epilepsy forms.
There are no doctors here, but what are some suggestions that have worked so I can have a conversation with my neurologist.

I had a left temporal lobectomy on the 13th and I thought things got better but 9 days I had a really bad seizure, luckily my hospital is hopeful and encouraged my local hospital to let us go.

My tongue and cheek are very swollen and my son was so sad. Hopefully tomorrow is a better day

I know the community and comments on here are filled with best intentions but being middle aged American with no life long insurance worth a damn and extremely resistant epilepsy that is destroying my ability to function every month that I have brain damaging TC seizures is debilitating. I totaled my car and the nearest neurologist worth a damn is 3 hours out of reach. I’m just slowly wearing away to nothing and all I want is to have a hand to get back up and onto a life again but this country doesn’t provide for disabled any longer and right or wrong the only solution is either a belt around the neck of a fifth and a handful of downers to drift off to that permanent vacation.

Just have to rant it is the only thing going to keep me alive at this point and that won’t be a thing for long

Lacosamide has caused me to be unable to orgasm and it's really starting to get to me. I do not want to switch medications, as this med has been incredibly effective and I really do not want to risk having a grand male again or losing driving privileges. But wow! This crap is the worst! My sex drive has never been very high, but lacosamide has also made it even lower. Having it be so low helps me not feel as frustrated about the inability to orgasm, but I still feel psychologically harmed by it. This big part of the human experience has been completely castrated (no pun intended) as a fucking byproduct of being epileptic. Sexual dysfunction is so rarely talked about as a side effect, ESPECIALLY for women, and it makes me feel invisible. It hurts my soul. Why would anyone ever want to be with someone like this?

Hello everyone!
In september I had my first TC seizure. Im 17. The doctor put me on Depakine (500 mg) and lamotrigine (the dose gets bigger gradually)
For 3 years, I had had no belly. Maybe after I eat, but in the morning flat abs everytime.
One week ago, I started to see in the morning a belly and I know its not a big deal but it is for me. Is it the Depakine? I also feel my apettite is getting bigger, especially snacks and sweet treats

Hiya everyone f (30) I'm currently on lamotrigine 300mg but had two seizures in a week and it's destroying me mentally the hospital have suggested trying Oxcarbazepine instead, has anyone else had any experience with this drug? I'm very apprehensive as I don't like taking meds but these seizures are destroying my self confidence and mental health and I'm so tired of my body being full of bruises! Thanks in advance

My life has been pretty normal again for months as my epilepsy was under control. Everything was going right, I was about to start a new job soon and complete my real estate license.

I was on my way home from my real estate state licensing class and I got 2-3 kinda of cold static dizzy feelings… then… no memory.

I woke up and jumped and sort of came to my senses. The officer explained to me that I hit 2 cars and that I’m lucky I didn’t slam on the gas from my seizure or else it would have been worse.

Apparently the drivers I hit were okay but when they went up to my car I was unresponsive. The officer explained he had to break my passenger window to get in because the car was locked and still in drive.

My steering wheel exploded with the air bag, my windshield is done for, my rear bumper is screwed, my door was folded in, the frame was definitely damaged too and I bet its a TOTAL LOSS.

That is the first and only car I’ve had.

I’m so tired of getting up just to get knocked back down.

EDIT: Thank you all so much for your kind words and support genuinely. This condition is so isolating, not being alone in this struggle makes me feel so much better. I’m happy that nobody was hurt, I’m so lucky.

Sat with them and they told me that, after consulting records and a panel with the Cleveland Clinic neurosurgeons and epileptologists hey recommend SRFA (radio frequency ablation) rather than LITT (laser ablation) because the hypothalamic hamartoma I have is too small for laser to burn off. They want to make sure I maintain my memory as a writer. It’s going to be difficult to choose whether or not I should have the surgery.

I keep asking for people who successfully had them to leave comments of encouragement if they’re now seizure free so that my confidence is a bit more lifted. But there doesn’t seem to be anyone on the subreddit, which is a shame. It’s going to take me longer than I anticipated to make the decision whether or not to have it.

I want to be positive. I want to move forward. I want to shake my neurologist and be like "this is ending. We're doing the tests. We're changing the meds, we're stopping these seizures because I can't live like this anymore".

I want more kids. I want to drive. I want my life back.

I just need someone to tell me I'm not an idiot for trying to be positive. I guess I just need some support.

Basically what the title says, I'm so afraid to start lamotrigine!

Starting with a very low dose, 5 mg Lamotrigine and 25 mg Briviact, still I can't help but think about the rash. I'm so afraid, I've been crying since I got the prescription 2 days ago.

I don't know why I'm writing this post, I guess I just need some support, it's my first time taking antiepileptics!

I’m not sure what the right words to ask for this advice are but, we have a 26 year old son with epilepsy, autism, ID and more. He loves to sit at the computer and play games. Suddenly he is having seizures while sitting there. If we are not in the room with him at all times we have a camera set up so we can always see him (he also has drop seizures that cause real harm). When he has these seizures he gets tangled up in his headset, the computer crashes to the floor, he crashes to the floor and anything in the way goes flying. We are working on having the carpeting replaced with better padding but I want to create a desk that he won’t hit his head on and a chair that works better for him. He has a Herman Miller Arron which we thought would be great but it isn’t. We e tried padding the hard areas but he rips it off. Be been googling rubber tables, etc. and I’m just not seeing a good solution. It’s incredibly stressful for us and horrible for him. Any suggestions on setting up a little desktop haven for him that is safe? He also has a laptop by our couch and an iPad but he loves to be in that room on his desktop. Thank you for any thoughts

Don’t know if anyone else has experienced this before or if this is all in my head. I also don’t know if this could potentially lead to something dangerous like having seizures in my sleep (which I’ve experienced before) but I just wanted to reach out and see if there are others who might have been in the same boat as me.

I’m a 27F with TLE and a VNS implant that experiences various types of seizures: tonics, tonic-clonic, partial, and even PNES. ( you get the gist ) However, I dream and I dream vividly. I can remember almost everything I dreamt about from the night before. Anyways, in my past few dreams I’ve had seizures in them. Woke up fine just a bit sweaty and nervous because I’m aware about SUDEP (my healthcare team has mentioned I’m at a high risk).

Now is this something worth noting to my doctors for my next appointment or is it my brain just playing games with me?

This is the only subreddit that I really trust and find true connection with.

I’ve been feeling this strange feeling lately on only my right side. It almost feels like pressure (or like someone is grabbing it) I feel it around my right eye socket, nose, and upper part of the right side below the nostril. Its hard to describe.

I have both focal seizures and tonic-clonics. History Deja vu, olfactory, and goosebumps/prickly feeling. (Undiagnosed for 8 years till I had a TC)

I feel I’m just being paranoid and anxious. But it doesn’t feel like that.

Anyone else get this, or can put it into better words?

Thank you in advance!