My Epilepsy Update; Focal Impaired Awareness Seizures

Last Friday I suffered my first believed to be a Focal seizure it was so scary! Hard to explain to people what happened without looking nuts. Found this video helpful to hear someone speak on it. Thank you!

Thank you for this video. I found it very helpful.

I am very glad I found this video 😢. So many things everyone describes r what I’ve been feeling. It gives me a peace knowing I’m not the only one. Waiting to see a neurologist. Thank you for sharing

Just listening to you describe how seizures affect you... brought tears to my eyes. To finally hear someone describe the very same feelings that I have. Wishing you best, your latest subscriber ❤

My Epileptologist suggest the weirdest seizure I explained to her might be this. I was at work, I remember taking 1 step then my head & whole body felt very tired in the blink of an eye. I went to wash my dishes & kept hearing "Do you know where you're at? What's your name? Are you OK? I stopped, went out to smoke. An outside work told me the ambulance was here & asked Do I know who they came for & I said no. Went back in to work & a coworker asked if I was feeling better? I asked why? He told me I was in the dish room sitting down tying & untying my shoelaces. Police & Ambulance were there. They said I signed a form saying I'm ok. Between that 1 step when I instantly felt tired...an hour & a half passed! Normally I have Gran Mals, they said I didn't this time. But how did all that time pass & the ONLY thing I remember was feeling tired in the blink of an eye. Like everything in that 1 & half hour I did during the seizure, when I became conscious I was still in the same spot I remember. Very scary!💜💜

I'm newly diagnosed at 41. I love that you said you can't tell if that's normal or if its epilepsy. Realizing I was having seizures and not knowing that they were seizures, and now I'm hyperaware looking to try and determine what is and what isn't a seizure, and its hard to tell. Some parts are obvious, but others not so much.

I have this. It went undiagnosed for 3 years and was terrifying. Did I have early onset dementia or perhaps a brain tumour, I just didn't know. It was only taken seriously by my Doctor when I had a seizure whilst driving. Fortunately, I swerved off the road into a ditch rather than into oncoming traffic. Fortunately a neurologist identified it almost immediately and prescribed lamotrigine which seems to control it. Like you I believe my seizures are brought on by stress, although unlike you I get no warning.

the seizures start in my dreams too

Interesting to hear how different some of your experiences are from mine!! Mine always starts off with Deju Vu and is worse if interacting with someone or in a busy place but I go totally blank almost as if I don’t exist for only a few seconds followed by retching! Afterwards I just feel numb and very calm. 😅 like you I experience night then at night time while sleeping, they are much more scary and leave me with headaches and panic (although these are far less frequent). Thanks for sharing your experiences, nice to not feel alone!!

Thank you for describing this so well! I liked how you said you are trapped in you body that really how it’s feels. It’s so hard to describe to other people

For the last 4mths I thought I was going mad but it all makes sense thank you so much 💜

focal aware seizures are the ones I’ve had the most and for me my heart starts racing like it’s gon burst thru my chest so I think thats what gives me all the anxiety & fear cuz you just feel like you don’t know what’s gonna happen next and you have to be awake for all of it so it’s really scary tbh and yes I understand and I like how you said you feel trapped I always lay down when I have one and it’s kinda like I can’t move, I’m frozen, just wanted to leave some of my thoughts here appreciate the video as well🖤

I also have partial complex seizures with loss of consciousness. My epilepsy is resistant. At the moment I'm taking 10 pills a day, 4 different medicines and it's still not 100% under control. I've had 7 seizures since the beginning of the year. Next week I'm going to do an EEG video

I have these ,but definitely think it all started as nocturnal seizures, ive been diagnosed with complex partial seziures,but now theyve changed so im just waiting four results from a four day eeg , hopefully ill get all the answers,an they can explain were the seizures are coming from as im on lamotrigine and keppra both the highest dose an also clobazam or something. But thanks for sharing your experiences,its helped me alot ,take care xxx

Thank you for this video. I've had this for years but i was constantly told I have panic attacks. It's really comforting to hear from someone who has gone through something similar. I was wondering... how do you get around the driving restrictions? someone told me in the UK you can't drive for a year after a single seizure, which is a little absurd to me.

I always find epilepsy, so complex. It’s why doctors Can’t give a general solution, everyone has it different. It’s very frustrating to take meds that solve your epilepsy, but produce a laundry list of side effects. Sadly I don’t think a actual cure would be available in our lifetime, due to lack of funding and research. only 1% of the total world population suffers from epilepsy. We are a minority that the general population doesn’t care or need to care about. Humans don’t really care about problems until it affects them.

I have the very same symptoms as you and I've had it happen once while asleep when I woke I couldn't speak properly and had memory loss aswell thank you so much I felt like every time I tried tell my friends or family what was happening and how it felt that I was crazy I could hear what I was saying and thought myself that sounds so crazy but its what's happening

I EEG brain they're going to test me if I have epilepsy how many appointment on Thursday😊😊😊😊😊😊😊😊😊😊😊😊😊😊😊😊😊😊😊 I have seizures Lachelle😮😮😮😮😮😮😮

Your dog is so cute!!

The good thing is you’re not aware that it’s happening. The bad things is your not aware that it’s happening.😭 Sometimes, when I feel it coming on, I feel like I’m shifting out of reality and that I’m losing control, then I feel stable but exhausted. I then wonder, did I just have a seizure. It’s the feeling of anxiety that you did something embarrassment. Also, since having seizures, my personality seems to have completely changed I’m experiencing sensory overload, very sensitive to my environment. Like I have Autism. I’m on Lamotrigine but my Dr said it wouldn’t cause changes in personality