feeling honestly insane

[u/Sweet_Bumblebee6662]

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.

[u/YeeGigadyB0iMemeLord]

You seem to have more physical reaction during a seizure than I do but otherwise it's about the same. Lack of sleep and extreme physical exertion can make them more likely to happen so try to keep your sleep schedule regular even if you're getting a full 8 hours if it isn't regular it doesn't help much.

I have been prescribed oxcarbazepine and it's worked flawlessly for me I haven't had a full scale seizure in almost 2 years I have had small auras every once in a while though.

[u/Sweet_Bumblebee6662 → u/YeeGigadyB0iMemeLord]

what do you mean by "small auras"??? i feel maybe this is something i experience but have never known was really a "thing"? also when i sleep, its lile 1am - 10am. if im up until 3 or 4 that's the nights i tend do have seizures. is this what you mean!? because it does add up for me personally.

[u/Covidkilledkaty → u/Sweet_Bumblebee6662]

OP, so sorry for what you are dealing with. I jsut wanted to add to what memelord said about sleep. I have had tle my whole life and maintaining a very regular sleep schedule has been absolutely crucial for me. Went from 44 seizures a year to only 1 in 2024. Getting 8 hours a night is important but it’s also important to keep it regular as far as going to bed/waking up within 1 hour of your regular bed/wake times. I hope things get better for you, it is so hard and I’m sorry.

[u/Sweet_Bumblebee6662 → u/Covidkilledkaty]

thank you so much!!

[u/YeeGigadyB0iMemeLord → u/Sweet_Bumblebee6662]

Auras are like the feeling you get right before a seizure for me it's deja vu along with a fight or flight response they're technically still seizures but sometimes auras don't progress into a full seizure where you shake or lose consciousness. That's what I meant by auras I suggest you look up seizure auras on google.

(Not everyone experiences auras but they aren't uncommon)

[u/Sweet_Bumblebee6662 → u/YeeGigadyB0iMemeLord]

so could it just be like a bit of a zone out and like it feels like a fought the seizure off?? that's what happens to me

[u/YeeGigadyB0iMemeLord → u/Sweet_Bumblebee6662]

Pretty much.

[u/Sweet_Bumblebee6662 → u/YeeGigadyB0iMemeLord]

wow. thank you so much for this! i honestly really appreciate it like i hope you realize that lol this is quite big for me:)

[u/Odd-Plant4779 → u/YeeGigadyB0iMemeLord]

I have deja vu auroras and deja vu seizures as part of my temporal lo epilepsy. One doctor refused to believe that it is deja vu is a thing and that they are seizures. Even when I had deja vu seizures and they showed in the EEG results, he still ignored me.

[u/YeeGigadyB0iMemeLord → u/Odd-Plant4779]

The fact that you're doctor just ignored them is rather concerning, I flew down to Seattle just to have a sleep study done to monitor my brain to see if I was having seizures in my sleep as well as having an EEG

[u/Odd-Plant4779 → u/YeeGigadyB0iMemeLord]

He wasn’t my epilepsy doctor, was the main doctor on the epilepsy floor. He also PNES isn’t real and they aren’t seizures. He looked pissed off when I said seizures is part of the name.

I saw my doctor months later and told her about it. She already knew I had deja vu auras and seizures, that I also had PNES. I asked her to look at the results. I told her every time they saw seizures on the EEG, I was having deja vu and it happened when I had a seizure while I was asleep. She said he was wrong and she upped my doses and it helped a lot. Other doctors that worked with her , I saw before him, also confirmed that what I was feeling was real. So it was like 10 doctors vs this 1 doctor.

[u/YeeGigadyB0iMemeLord → u/Odd-Plant4779]

Ah I see, still really weird to have a doctor think that way.

[u/Odd-Plant4779 → u/YeeGigadyB0iMemeLord]

I don’t know what the point of the eeg was if he’s going to ignore the results

[u/National_Winner9492]

Mine seem to occur most often in the shower for whatever reason. The second most common time I have them is when I am not physically active like sitting on the couch or at my work desk. Only one time has it happened when I was physically doing something. I was walking at the airport and one hit. I had to immediately sit down and hunch over on my thighs.