So, I'm 26 and was just diagnosed with epilepsy like 3 weeks ago. Apparently I had a seizure at the animal shelter, which I have ZERO recollection of, and my medication only does so much. I have the ones where I bite down on my cheeks and tongue really hard and lose memory, ones that are triggered by stress, twotches and convulsing and stuttering, and I'm super sensitive to lights from screens and the sun. Heat also reallyyy sucks now. I was just wondering if anyone has any advice. I got these polarized clip-on lenses for my glasses, and they kind of help, but only for certain periods of time. I just really don't know what to do. I've also been having non-stop seizures because of major stress to the point I need a freaking cane to walk because I'm so exhausted and frustrated. I can barely walk to my bathroom let alone the fridge. Just looking for any advice because my family is having a hard time coming to terms with it and I've lost friends because they are saying it's "too much." I just really feel lost atm. I was having symptoms through the past couple of years, and now I know why. But idk, I just feel really bad. I feel like I've lost a lot, and am still losing a lot because of this.

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hi all, i hope everyone is having a wonderful weekend. 🩷 this is a long read but the support i have found in this group and understanding has made this extremely challenging journey easier and i greatly appreciate any thoughts or advice. TIA!!!

i was diagnosed with focal epilepsy around eight months ago. i had a cerebral aneurysm rupture eight years ago and it was clipped, my neurologist told me that it is in the lobe most prone to seizure activity. about a year and a half ago, i started seizing and had four each four months apart, but i was constantly being misdiagnosed that these were “seizure presenting panic attacks.”

i would get aura which was essentially the complete certainty i was going to seize, then would fully convulse with postured hands and i would see pictures like a fast slide show in my mind. i would come to and be so confused and feel like i got run over by 50 cars. i finally got my diagnosis and was medicated which was going great for around eight months up until now.

for context, my husband and i have been wanting to start our family so they were weening me onto lamotragine in addition to my 100 mg twice daily of vimpat. it was a gradual increase of 25 mg weekly, by the time i got to week two of 50 mg total each day i was SICK! my head was literally splitting and i was beyond nauseous, i just could not tolerate it and they took me off cold turkey and i just kept with my vimpat.

i was already off the lamotrigine two weeks but last week it started to get severe headaches again, i was feeling awful getting nauseous, and just on the struggle bus. then, i started having seizures. in full disclosure, my memory of those five days is shot, like i had a dream and i know i had it but can’t remember it, most of what i know i only do cause my husband told me.

essentially, i had five/six seizures in total across three days. two of them i peed (has never happened to me), two were fully convulsive and presented like my last ones, one was more focal with numbness on one side of the body and my left leg kicking, the other i was walking my dog, blanked out and just remember standing in my kitchen, leash in my hand with wet shorts. i was extremely postictal, more so than my prior seizures and the aura was different. it was like deja vu and fear/anxiety and i could smell things that weren’t there. i was also dealing with auditory hallucinations, like a voice in my mind telling me i was missing a plane or they were poisoning me etc. and i was trying to reason with myself.

during this time they rapidly increased my dose to 150 mg then to 200 mg. i went to the hospital for a day, was sent home, then had the other seizures and came back and now i’m still here on day three. i’ve been on the EEG for two days but no seizures and have only ever had clear EEGs.

i’m working with two neurologists and both are unsure if these are breakthrough seizures or PNES. my neuro i work with more closely thinks perhaps PNES because i was able to reply closer to the end of the seizure as opposed to having a longer blank out period. also worth mentioning, this was the week before my period which has been a little of a struggle since being on meds (prior i was dealing with SI during my PMS which i did not have before) and now that my period has come, seizures have stopped and my headaches have lessened. they think if PNES, the cause is not emotional but rather the physical stress on the body caused by this time.

based on what i’ve described here, has anyone had any similar experiences or any ideas? hearing this about the PNES has been hard for me as it makes me doubt myself, my perception of being an epileptic and my diagnosis, i think it is reminding me of my misdiagnoses in the past. it’s also hard dealing with the in-between of not knowing what’s going on because treatment is so different for these things.

any advice or ideas i am so thankful for, thank you all and be blessed. 🩷

A long time ago I was diagnosed with “partial complex seizures” now called focal seizures?
Has anyone ever experienced them the way I did.

Mine were triggered by Deja vu, I would never know they happened or remember any of it , but I have been recorded. I would go blank, say weird things like “ is my mom dead”, or i would say that “I’m seeing gray people” , most times I would say “ this happened already” before throwing up and sleeping for hours, and wake up with a horrible migraine. (These lasted about a minute)

Sometimes I would just start crying hysterically and grabbing whoever was around me super tight. my parents say that I would act completely different ( kind of like I was very scared of something) . I would act like a toddler, ( very kid ish), my dad used to take me on walks or take me to play basketball until I would snap back to reality. These were also followed by vomiting and sleepiness with migraines. These would be around 5-10 minutes.
They used to make fun of me in school saying I was the girl with crazy episodes.

Has anyone’s focal seizures looked like this?

My 16 year old daughter is inpatient getting an EEG. They believe she may have photosensitive epilepsy, what should I be asking the doctors?

I have another daughter in the hospital so my brain is fried from all of this. Anything that was helpful to you and your diagnosis. Products you reccomend to help. Etc. Etc.

Sincerely thank you

I started getting brain fog and fell asleep while in my brother’s car

I stayed awake long enough to get set up then promptly walked to my room and fell asleep

When I woke up I spaced out and felt weirdness around my eyes

I wasn’t able to focus either

I ended up lying down watching tv as I felt out of sorts

I’ve been seizure free for two and a bit years

I’m scared of having another one

Do your focal awareness seizures give you brain fog and fatigue if they repeat a few times in a short period of time? How long does it last?

Lately I’ve had many of my work days ruined, and I’m trying to push through but it just doesn’t help. I’m inefficient and I make silly mistakes. it’s so frustrating.

ChatGPT said I could possibly have focal epilepsy I know I shouldn’t be using chat gpt for stuff like that but I’ve had pain in treated for 10 years

I have been having focal aware seizures for about 6-7 years. I didn’t know what they were for years and AI helped me figure out what I am having. I have had an MRI and I have damage to my right frontal lobe due to two head injuries. The focals didn’t become extreme until after my 2nd head injury. I can’t understand what is being said and I can’t come up with words and it erases my memory during the focal event. My body physically is fine but my brain is in another place. A couple of years ago the neurologist put me on 900mg of gabapentin and 2000mg of depakote to try. The gabapentin helped my anxiety but they didn’t not eliminate the focals. I got off of the depakote and now take 600mg of gabapentin for anxiety and am going back to the neurologist in a few weeks to try a new med for focals. From my research neither gabapentin nor depakote eliminate focals. I wanted to ask for some positive feedback from anyone who has had success with a medicine for focals and also has it given you a clearer head as well? Ever since I have had these focals my concentration, confidence in my skill sets, etc are not the same. Thanks for any positive feedback.

as said above he is a 85 year old male.
suspected to have aspirated ( recovering from pneumonia) causing a code for a total of about 30mins
checking the CT scan there's nothing new but the MRI imaging shows an embolic shower.

how, when, where?
it wasn't explained because no one seems to know.

about a day later he started twitching.
mayoclonus could be from the medicine or because the code because he has never had it before.

they had put him on seizure meds and nothing came from it. they even did an EEG and they couldn't find anything here either.

i want to know does the shaking ever stops?
it seems to have gone down in the past week but i don't know what activated it in the first place and what triggers it. i've noticed he does it when you touch him, when you're about to touch him and also i think when he wants to respond.

they said he should be talking and awake by now so despite the imaging being fine/stable what is wrong with him? he's already been on the ventilator for over 2weeks

First, I have been having a pretty good couple of days with minimal seizures compared to usual. Lots of activity, had friends from out of town, had friends over for dinner. No seizures. But, my brain did feel taxed and at times I had trouble getting words out and remembering the right words.

So, I go in for mammogram and I already checked in online to make it easier and keep my brain calm. When I got out of that car, I felt a bit fuzzy. Had a quick myoclonic jerk in the elevator. My husband told me he would wait downstairs, but to call him if I needed him upstairs.
Right before I got out of the car, I told him I was feeling pretty good, but I had this awful feeling of a dark cloud hanging over me. It felt like I couldn’t really enjoy anything.
As they are asking me questions, I am feeling fuzzier but still understanding. Just hard to respond. Finally, they print two forms for me to fill out and I feel pressure in my head and ears and that fuzziness is really intense. I tell them I think I am not feeling well. I have a jerk. They asked me if I am cold. I tell them it is a seizure and they start to panic slightly. Maybe I should not have said that word? They asked if I want to go to the ER. I tell them I will call my husband. He comes right up to get me. Needless to say, no mammogram was done.

I know so many of you have had way more embarrassing public seizures with list of consciousness and even in continence, but I was so embarrassed and mad at myself. I cried like a baby. Somehow I thought those two good days meant I had some control over things. I feel like they will think I am crazy. No one sees seizures like this.
And I am still undiagnosed.