My Epilepsy Update; Focal Impaired Awareness Seizures

[@dawnmosley]

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 ❤

[@Landmtreasures]

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

[@way-cute]

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.

[@diamondivy5203]

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!

[@DavidLangley-n6n]

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.

[@NumptyBumpty]

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!!

[@AnnieBean]

Totally! We all experience slight differences. Interesting to hear you're the same as me with the busy place situation.

[@bekijennings9567]

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

[@techniciandave9253]

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

[@monicacharping6347]

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

[@jpedfonseca]

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

[@jokirwan3284]

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

[@Gravywrld999]

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🖤

[@shadesofgreyxx]

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.

[@LadyEpileptic]

It’s the same thing in the USA. You really don’t do any body any good or yourself driving down the road 70 miles an hour having a seizure lol. So ya it’s a disability. The UK actually has a lot of really good programs to help epileptics that the USA doesn’t have.

[@derekmarshall6427]

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!💜💜

[@patrickpatel5527]

Your dog is so cute!!

[@Visionsofjade]

the seizures start in my dreams too

[@jennarikard5285]

I have been having these things that I call episodes and my doctors told me they were panic attacks. I have never really been able to explain how they make me feel until I watched your first video. My doctors won't listen to me and laughed at me when I asked if they could be partial seizures. Any advice on how to get the right diagnosis?

[@goddessvibes2345]

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

[@naomirobinson818]

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

[@WonderingOasis]

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.

[@furqaniqbal7223]

Check with a doctor who can have an MRI done. Keeping a track of seizures is very important. You should drink cold water immediately after you have a seizure as this will immediately cool your brain and body. If you are still feeling weak, you should drink a frappe or smoothie as this will further relax your body. Eat a full day meal and add vegetables and fish in your meals. Watch a comedy program to reduce stress Get proper sleep Always keep a cold water bottle with you as this is the first liquid which will relieve the pain of seizures. Avoid: Smoking or anything that affects the brain Amusement park rides as this can worsen seizures Being around Chemical factories because you may feel difficulties in breathing and this can cause seizures Good luck and I hope you stay well.

[@Psychol-Snooper]

4:00 when your pillow becomes a poodle.

[@AnnieBean]

😂

[@LadyEpileptic]

Lol

[@danielledewitt1]

My epilepsy decided to ruin my new years eve. I had a tonic clonic sat in my chair, mum said my pet dog ran off and ditched me.

[@AnnieBean]

Sorry to hear that, hope you're doing better now

[@danielledewitt1]

@@AnnieBean I’m controlling it with clobazam which I take when I get a warning which in my case is either booming head or the confusion. Both mean seizure incoming, clobazam does something my main drug briviact can’t do, completely stops my epilepsy.

[@serenareyes7435]

The 15th I had an Aura and took my rescue at 11 am. I was fine the rest of the day, then a Focal Unaware occurred cooking 2nd degree burns both hands 6pm

[@danielledewitt1]

@@serenareyes7435 Ouch.

[@heatherlemon4756]

How do you manage stress?

[@lauraleeMallory]

Do u wake up with pins and needles with your nocturnal complex partial seizures? I’m waiting on the results from a recent ambulatory eeg and had multiple of these incidents. I’m not sure what’s causing it😅

[@lachellewade5552]

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

[@jessicalouise2640]

I resonate with feeling crappy about wondering why it happened and wishing you could have stopped it somehow. For me it almost feels like if I was able to somehow just try harder before it sets in, that I could make it stop. Of course that’s never been successful 😂

[@aliceneighbour1666]

Do you work? Work personally makes me stressed but I wouldn’t know what to do if I didn’t work.

[@annhardy5467]

Thanks for your video and talking about your condition of Epilepsy. Have these seizures myself and one woke me up in the night last night. Just when you thought the medication is working it happens again. Wouldn't wish this condition on anyone.

[@LadyEpileptic]

I think impaired awareness means that you are not conscious of what is happening. .. also known as complex partial seizures. I believe you are describing simple partial seizures. The only distinction is the awareness of what is happening to you. Partial seizures and generalized seizures can be very dangerous. But often paramedics don’t recognize or acknowledge partial seizures and they are equally as life threatening as a convulsion.

[@onefabknitternz]

I had it explained that impaired awareness means you still can hear people talking to you ,can still see everything, can explain it all after ,but ate impaired as tou might be frozen staring at a certain spot for a shirt time so can't answer or move .

[@BethB-ty2xx]

Have you considered the ketogenic diet?