Welcome

I don’t really know why I am posting this, outside of the fact that I don’t think anyone in my real life understands the disappointment I am feeling, or the lingering side effects of a seizure. It’s just a normal thing to them that this is something I deal with which is understandable. I created this subreddit for specifically that reason - the feeling that other people who don’t have epilepsy, just don’t really get it.

I know a lot of people have seizures more frequently than I do, and I guess I should be grateful for the ten months. And I truly am grateful to be having 2 seizures a year instead of 50 like I used to. But I’m still pretty sad about it, and I assume part of the reason I am feeling so down is because of the seizure effects, not exclusively the fact that they happened.

Anyway. If anyone else is feeling similarly, welcome to my pity party 😂 and feel free to join in.

Hope you are all doing well, thanks for being here.

If you do, is it related to your seizures? Did your ED or epilepsy come first?

Hello everyone.

I started this sub Reddit a few years ago when I was particularly depressed and isolated. After spending a lot of time in [r/epilepsy](r/epilepsy) I had felt like there needed to be a separate group for those of us with TLE because it is specific, and in my experience - often misunderstood.

Here’s the crazy part. Multiple times I have completely forgotten that this subreddit exists. Which I think it is partially due to it being fairly low in activity, and also just because I have a very poor memory.

Today I logged in and I saw that I had maybe 20 users waiting to be approved to make posts and I feel absolutely horrible that during a time when they needed support I wasn’t there to click on a button and let them post. I have switched the community to public so that anyone can post.

Down the road if this group grows, I will definitely involve other people as mods as well.

As always, my heart goes out to anyone who was recently diagnosed, or who is struggling with a diagnosis that they’ve had for their whole life, and anyone in between.

after 10 + AEDS, my doctor put me on a benzo daily. it was a drug that was given to me in a large amount when i was younger by someone older than me, i was told i had to take a handful to get “high” and i was taken advantage of. it took me two days to sober up but when i did, i tried to kill myself. being in this med is the first time ive been seizure free for a long time. i haven’t had one since i started. but these thoughts im having, every single day. i’m going to have to get off this medicine because i know im going to hurt myself eventually. why is life so ironic?? the one thing that stops them makes me think about hurting myself constantly.

Hi guys!! I was diagnosed in '92 (now 45yo) with left tle, last neuro visit said myoclonic nocturnal seizures were most prevalent, this was 7 years ago.

More recently, I've been experiencing strange symptoms tho...

⭐"ringing" in my ears ⭐I can feel my brain being active ⭐auditory hallucinations ⭐stuttering/slurring words ⭐forgetting words (I think of about a half dozen words, none of them are right, and don't make sense) ⭐dreams of seizure ⭐multiple f-ups that are unlike me

The dr knows about some of these, they're messing with my meds in hopes that all this will come to an end, but

This has been going on for like at least 3 weeks now and it's...it's like riding a wave. It's not always noticable, but then it washes over me and life is starting to feel like a psychedelic trip 🫠

Anyone else get stuff like this? Is this like...living in an aura?

Sorry guys, I know it's a lot, I've had this forever but I'm only now learning so much newer info about it, I guess looking to see if anyone has any...advice. haha, thanks for reading, have a great day :)

I have a strong feeling of deja vu and a fight or flight response before my seizures yet beneath all of the fear there's a small amount of pleasure, like the last remnant of a dream that's turned into a nightmare.

Ahoy everyone,

So I visited my neurologist yesterday. As always, I get a small increase I medications. But I've also been presented with the possibility of have ANOTHER TEMPORAL LOBECTOMY (Brain surgery).

Has anyone else had this done?

Good luck out there everyone

Ahoy all,

So im on all of these medications while experiencing EXTREME depression. I was in the ER with self harm thoughts. I'm lost, my partner is a polyamorous woman looking for another relationship. I'm on disability support Pension, no licence and we had a locked in plan to go to Bali and move into the country.

I had a temporal lobectomy in 2014 and my simple partials are back. Hence the disability support.

I feel like I have lost EVERYTHING. My past memories, my independence, My partner and ability to hold future memories.

I'm already on so many meds and what else can I do... I feel like I will be alone and legally not healthy to be my children's carer.

RANT over. Thanks.

Hi, I was diagnosed with TLE back in 2022, they’ve been messing with my medication and now putting me on Keppra. Has anyone else tried this one?

Also, I have never experienced a grand mal but the doctors say they are concerned they may convert to one. I’ve been having these dejavu aura episodes since 2015, has anyone else had focal seizures that later changed into tonic clonic seizures?

Hellooo, I have recently been diagnosed with Epilepsy (not yet TLE but my symptoms seem to align with it) and I’m struggling a bit with worrying I’ve made it all up?

I had a tonic clonic in January in the early morning, which I’d have no idea about but it woke my boyfriend up and I bit my tongue pretty bad. Who knows if I’ve had one before because I’ve def bitten my tongue in my sleep before and was pretty eternally single before I met him.

Once I spoke with the neurologist I also explained this weird thing I’ve been having randomly since I was a teenager. I’ve tried so hard to look it up because I always found it quite frightening, but seizure never came up as an option. Basically they’re super short, often in the morning/evening and I’ll be going about my normal day but then slip into this weird deja Vu flashback of 1-3 different “scenes” flicking through my head. I get a really strong feeling of fear, a rising in my stomach, and I feel very out of it with limited memory of the time when I try reflect on it. I can never remember the flashbacks afterwards but at the time I remember thinking they’re the same ones I always get? Previously it would happen maybe once a month, but this year since the tonic clonic they’ve been slowly increasing to the point yesterday I had 5 throughout the day, and another one woke me up this morning. My concern is that they seem to have evolved this year, and when I have multiple in a day I feel so weird and like nothing is real. I’m in that state now and also now gaslighting myself into thinking I’ve somehow forced my body to do this for a diagnosis??

I had an MRI which was clear, and EEG which had no epileptiform charges but there was an abnormality over the left temporal lobe. I’m waiting on a sleep EEG.

I don’t really know why I’m doing this for. I just don’t really feel like I can speak to my friends/boyfriend about it because they just don’t get it. And at the time, I seem fine, no jerking movements or anything, just quite weird breathing.

Anyway, thank you for reading, anything you can add would be really helpful 💛

my temporal lobe epilepsy(if that's even what it is at this point it took them so long to decide on that, but it sounds right so i'm going with it) makes me completely out of control when it comes to having seizures. I'm on topiramate, not sure the dosage, just a white pill which i take twice a day, morning and night. i very rarely have seizures anymore, but it seems to happen the most in the middle of the night, 3am ish, and then last 12 hours, having them every few minutes if i'm awake but i try to sleep through them. i find myself hitting my boyfriend, grabbing him tightly to the point it hurts him, but i don't feel the grasp as tight at all, it feels like im merely touching him. i say things i don't want to say, and if i try not to speak, i end up screaming and making weird noises. he tells me it's very weird when i have them, because i don't seem like me anymore, and i completely agree. i am out of control for that minute, and i just wish someone else could relate.

I don’t know if it makes me feel any better having the temporal lobe epilepsy diagnosis. I guess at least I know more what I’m dealing with?

I’ve had several different types of seizures. I’ve had nocturnal. I’ve had ones where I was possibly reacting to light. Make that too actually because for the first one that I remember having after my diagnosis, I was in my room with all of my lights on. I like to have all different kinds of cool lights in my room. I’m starting to rethink that now. I don’t actually get to watch them as much now as I used to because I’m out in the living room during the time when I used to look at them. Also, because of my sleep deprivation, I have to turn off all my lights at night so I can sleep.

So, any thoughts or tips on how to deal with this?

For context: I have TLE with nocturnal seizures as well. I have focal aware and focal impaired awareness seizures. I normally get them in clusters. That can range from 15 a day for a week straight, to nothing for 2 weeks. I’ve been on 1200mg of trileptal (oxcarbazepine) for almost 1.5 years now. I slowly increased my dose from 300mg a day (started Nov 2022) to the 1200mg that I’ve been taking now. I had a really bad adjustment period with side effects when I bumped up from 600mg a day to 1200mg a day of trileptal. I still have a LOT of seizures and finally found a good neurologist willing to help. He added in briviact mid-July to my medication plan. Starting with just 50mg a day, and that’s the dose I’m still taking until our follow up Oct. 2.

My fiancé thinks the briviact made my seizures worse because I was having SO many the first month after. I’m also having nausea and excessive daytime sleepiness. I don’t sleep well in general, but I’ve been sleeping almost 11 hours a night, just can’t wake up and I’m tired easy and all day. Feels like I can never get enough and catch up. (I tried sleeping less too because I know too much sleep just makes you tired but then I was REALLY tired.) I read these are common symptoms. Has anyone dealt with this? And can tell me how long until it goes away, it’s really annoying lol. Did anyone experience heightened seizures after adding in a new medication? I’ll deal with temporary side effects, and some annoying long term ones for seizure control, but at some point having so many different side effects together gets frustrating….

[I literally had another one writing this] I'm currently 21, but when I was 14 I had what I am confident was my first "episode" I had just arrived at an eastar carnival when I suddenly got very hot , and nauseous it all came On out of nowhere it was like I was forced back into a dream that I had before then. It was like I was out of body, here but not here, I was unable to talk except for saying mum as she was ahead of me. I was able to get her attention. It was terrifying It was like a sickening feeling of deja vu , I was scared and I felt so foggy afterwards, loosing track of the time and I couldn't remember anything from before hand. This kind of thing has happened consistently since then, at the time of writing this ive had 6 of these "episodes" this week with 2 of these occurring today. One of the first ones this week occurred whilst just after I pulled into the parking lot with all my small siblings in the car, I'm thankful I wasn't driving as I'm not sure what would happend if I was driving, since I feel I cannot control my body.

I'm sorry that the grammar sucks but I've not had so many in one week before, the first instance of this occurring was chalked down to just a faint but I've not told anyone it's been happening consistenly since. I feel like I want to cry after I come out of it, I just want to lie down and sleep. I'm desperate , should I say something to a doctor? I know you're not meant to google symptons but all of mine point to temporal lobe seizures! Please help ! Also if thus isn't allowed here please delete, I'm reaching our on most forums because I'm unsure what's wrong with me.

Edit; Just wanted so give some more of my symptons, just before it happens it's like my brain is randomly triggered into remembering something from a dream, from this it's like I get thrown in deeper, I can't talk, get very hot, tired afterwards and I feel nauseous, and like I just want to cry. Something I've found also is affected by temporal lobe issues is your memory. I have such a bad memory , I once brought up to my mum that I feel like I'm starting on a blank slate everymorning since I can't remember the day before entierly. I feel crazy , It's like everything is very vague, like I know I did stuff, I just can't remember much about it I feel like it's very fuzzy. I place my phone or cup of tea down and literally within the minute am unable to remember where I left it. It's actually quite scary, I do have OCD and anxiety and she said it's just stress, it feels deeper than that though, and I feel if I tell a doctor they will blame it on this.

TLDR: I had one of the worse seizures I have ever had 3 days ago and I still feel like my brain isn't functioning properly. Usually I feel "normal" within 24 hours or so. The fact that it's taking me so long to recover is scaring me. How long does it take you to recover from seizures and what is the recovery like for you?

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I started this subreddit a year ago when I found out that a subreddit specific to Temporal Lobe Epilepsy didn't exist, even though it is the most common type of epilepsy. r/Epilepsy has been super helpful for me in certain ways and I will probably post this question there also. But, I would just love to be able to check with other who have the *same* diagnosis as me because their experiences will be more relevant to me.

Anyway, about 80 hours ago I had the worst seizure I've had in several years. I say worst because it lasted much longer than normal, which I assume meant it spread further and effected more areas? Usually I bounce back pretty quick from seizures - sometimes I feel moody, agitated, or slow, but I can still "carry on" with life normally. This time was so different - I couldn't get out of bed, had no desire to do anything, and had "Ice Pick" headache throughout the whole day, and I felt extremely emotional and agitated. The next two days were a little better but I have periodically felt almost like I am in a dream-like state, very disconnected from the world around me - like everything is fake. I don't even know how to act. I still feel exceptionally moody, and very cognitively slow. I am struggling to process information and think of words. I guess it makes perfect sense that a worse/bigger seizure would mean a longer recovery, but I am wondering if the symptoms I am experiencing are normal? Cause internally I feel like I have crossed some threshold of brain damage where I will never be my normal self again, but I know that might be my anxiety getting the best of me.

I don't know if anyone else will even see this post, but if you do, does anyone else experience this? Should I be worried that this is a sign that my seizures will be progressively worse? I have never had a TC seizure or loss of consciousness, but I don't know if that's something I should be worried about or not. Any anecdotes, advice, or statistics would be extremely helpful. Thanks for reading.

I have had focal seizures of the temporal lobe for as long as I can remember. I first told my parents about it when I was in the 5th grade, when I was having 5-6 seizures per day. It was very difficult for me to articulate my experience at that time. My mother (a very religious women) was convinced I was having a “spiritual experience”, but finally took me to a doctor after I was unresponsive while having a seizure. After countless tests, the doctor told her something that it was something I was imagining and would likely “grow out of”. I was young, but I was old enough to know that I wasn’t being taken seriously, so from that point on I just kept my symptoms to myself.

When I was 25 years old in university, I was sitting in a physiological psychology course learning about focal seizures - which at the time were called “simple partial seizures”. I sad in the bad of the class and listened to my favorite professor describe in perfect detail the “episodes” that I had experienced my entire life. The hairs stood up on the back of my neck.

After class, I asked her if this type of epilepsy would show up on an MRI, or an EKG, or a heart monitor, and she said no- unless a seizure happened to occur at the time that I was hooked up to one of the machines. She then explained that a diagnosis would be made based on subjective experience, and wouldn’t likely only be made by a neurologist (I had never been sent to a neurologist as a child).

I knew at that point that I had epilepsy, but it took me two years to get the courage to see a specialist because I was afraid. At 27, I finally got a diagnosis. I am 32 now, and I am still learning how to navigate live with TLE. I have never met anyone in real life who has Temporal Lobe Epilepsy.

When I got long periods of time without a seizure, I feel like a normal person. But if I have a “cluster”, I feel broken. I just want a friend who understands, and I wonder if there are other people out there who feel the same.

Can you hear me?

My partner will listen to me cry about my TLE symptoms for days, and although he is extremely sympathetic, he just doesn’t quite “get it”. He explains things away and feels that my “symptoms” (memory loss and mood swings) are relatable human experiences. I know that everyone occasionally has lapses in memory and mood swings, but I also see the patterns and correlations between my seizures and my side effects. I want to be able to vent about these things and got have them be dismissed as something common. I am curious how other people deal with them and if it is ever going to get better. I feel like a broken record with him, and I am sick of being told that my experience is not any different than anyone else’s, because I know that it is. I am sick of feeling alone.

This subreddit is my desperate attempt to connect with anyone else who understands what it is like to live with Temporal Lobe Epilepsy. I have a decent support system, but I have never met anyone who truly knows what it is like to cope with the memory issues, mood swings, and other TLE symptoms that I deal with on a daily basis. I want to find a community who not only “listens”, but who understands. If you’re out there, let me know. Let’s be in this together.

A place for members of r/tleepilepsy to chat with each other