This is how I deal with my epilepsy

What's does epilepsy feel like?:
Patrick was diagnosed with epilepsy in 1991. He explains what happens before and after a seizure, and what people have told him happens in the middle of his seizures. He has no memory himself of what happens. Patrick has gone as long as 10 years in between seizures but has since had an increase in seizures in the last couple of years. He admits he has not met many other people who have epilepsy and struggle with seizures.
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[shelbybeard]

i don’t even know this guy but i feel like it’s just him & i sitting and talking about our seizures. i truly love this video

[tomwk]

This is the best description I’ve ever heard of how it feels. I was diagnosed when I was 22 and I’m 34 now so it’s been a few years, and some of that time was very unpleasant. Listening to him makes me feel sad and happy at the same time, it’s sad because it’s just such a horrible thing, but it’s nice to hear someone else who deals with the same things, and be able to understand exactly what he means. You do feel alone in a way, even though you know you’re not, when none of your friends have epilepsy it’s hard to try and explain it and in some ways it can be quite embarrassing. Waking up on the floor surrounded by people is not a nice experience. But it’s really good to hear him saying he doesn’t let it rule his life, it makes me realise I don’t have to let it rule mine either.

[Michaellee-siyx]

I started having Grand Mal seizures in my early 20's and the doctors could not determine what was causing them. I even ended up having brain surgery to remove a large cyst they had found on my temporal lobe, however, the seizures returned shortly after the surgery. Now I was in complete desperation mode, losing hope and tired of feeling like a zombie with all the sedative drugs I was being prescribed. I then realized that God was the only one who could help me and after praying for about 8 months or so, his answer came to me at a 711 convenience store early in morning. I had purchased a coffee and added a non-dairy creamer to it and after only a couple of sips it started to give me my usual pre-seizure warning signal, which was a weird deja vu feeling. I then realized that it had to be something in that creamer since coffee itself had never given me any problems. It was the preservatives in the creamer(since it was non-dairy it required something to preserve it). So, long story short, I no longer eat anything with food preservatives, take no medication of any kind and 30 years later I am still seizure free! I thank God every day for giving me this insight because when I told my medical doctors about my discovery all of them ridiculed me and said that the acids in my stomach would destroy the preservatives. This was apparently not the case and later through my research on food preservatives I also found out that most of them are even carcinogenic. I hope this can possibly help at least one person out there as I know the horrible situation it is to have seizures.

[daddykipperflipper]

“Im not alone” this guy knows exactly how to put it to words. Thank you so much

[blumani]

44 years old now and just had another one a couple weeks ago. Had it since a teen but they've spread out over time. The description in this video is pretty spot on. Deja vu and auras suck. Just commenting to say F*** Epilepsy. I know I'm not alone and the best thing I can suggest is don't live in fear. You can't. I have to tell myself that everyday. I'm blessed with so much because I continue to climb the mountain. I don't have them daily, thankfully and my heart goes out to people that have it worse then me. Hopefully my comment helps someone reading this. You're not alone 🤙

[edwardulikowski]

My sister had epilepsy all her life and sadly passed away in 2017 at the age of 47. Like you she motored on every single day living life despite all she was dealing with. I always admired her for that and I admire you for telling your story and not letting epilepsy define you. God Bless

[travisgaye]

Such a wonderful and articulate way with words. I just had my first seizure 5 days ago and lost part of my tongue. Even if it doesn’t happen again, this was very comforting. Extremely bizarre and scary stuff - I have nothing but respect and empathy for those with epilepsy. Keep on trucking.

[kf]

Ive suffered with Temporal Lobe Epilepsy since i was 10yrs old, am now 38. Sometimes focal seizures, sometimes starting as focal seizures and spreading to become Tonic Clonic.
Has had such an effect on my life.
But, i am NOT giving up and letting it control my life

[josieunderdown]

I call my “Aura” spicy deja vu, because it’s more intense than regular deja vu. I’ve recently been diagnosed in February with tonic-clonic nocturnal seizures and it’s nice to hear others perspectives to help understand myself. I find it so weird just experiencing the before and after, and being told by others what happened and not even really knowing myself. And afterwards the pain is like being hit by a bus! Thankyou for sharing 💕

[erinferrara]

I appreciate you so much. I'm a Mother of a 19 year old with Grand Mal Seizures. My son is none verbal and autistic. You gave me tremendous in-sight into his experience.

[poppyozark]

I'm seeing this 3 years after this was made. I hope the best for you. I pray your seizures stop immediately and your life is blessed beyond measure ❤️

[lily.d]

My triggers are sleep deprivation and being too hot. The feeling I get before is always deja vu, bad taste or random chills.
Gosh I know what he means when he says none of his friends have epilepsy and he wishes he had someone to relate to. This was so well said!

[stringstorm]

The deja vu, the squeezing feeling, the soreness after the seizure. After the soreness, it's exhaustion. Those are what I feel when I get mine.

To the people who have helped me, thank you and I'm sorry. I don't mean to be an inconvenience.

[JessiPeele]

The way he describes it is 100% accurate. I’ve had epilepsy since I was a baby and I used to have absent seizures. Now I have paralysis seizures. Every once in a great while will I have a grand mal seizure. My last known seizure was when I was pregnant and it was scary as hell. They are so exhausting even just the absent ones.

[christophersakwa]

One of my friends from back in the day just passed away from injuries sustained during a seizure attack. He was alone at home when it happened, usually he'd feel the seizure coming and take himself to the nearest clinic, but this time it must have hit him when he was asleep and therefore could not preempt it. Rest in Peace Edgar.

[rob]

I too suffer from epilepsy and those auras can be pretty scary. Mine occur when I get that deja-vu feeling and my body just completely freezes and my brain starts racing with thoughts as if everything you're thinking are repeats of past auras, and that's exactly what they are. Every time, it's the same memories playing in my head of thoughts before going into a seizure. There's been plenty of times where I'm able to fight off going into full-blown seizure mode when the aura occurs depending on how severe the seizure is. It's very important to take your medication every single day. I am human and I do forget to take my medication even though I have an alarm on my phone to remind me. There's times when I'm super busy and before I know it, there's the aura followed by completely blanking out. My last one left my tongue chewed up and super numb where I couldn't even talk. The next day, the numbness would start going away only to get replaced by annoying pain that doesn't let me talk or eat comfortably.

[utdaarron]

I just had my first seizure yesterday whilst on holiday for my birthday, according to my girlfriend I was out for a minute and a half. I’m still trying to comprehend it and the way I feel about the whole situation today, truly the most terrifying thing I’ve been through and I’m scared of it happening again. I don’t really recall much other than darkness so even though I’m exhausted going to sleep scares me.

[bianca_badu]

This video has helped me understand what my 2 year old goes through when he has a seizure. I would love to see a video on here on the parent perspective of raising a child with Epilepsy. I often feel alone in my journey to raise him and make sure he’s well while dealing with the overwhelming emotions I feel myself while seeing him deal with this

[christinebicanic]

Big storm in the brain. Perfect description. I began having tonic clonic at 16. I have been seizure-free for over 20 years with medication. This video is spot on.

[chrstphrgrnt]

The way he describes this in detail & how he explains everything so peacefully & enthusiastically is from someone who really suffers from it & I appreciate these kinds of videos.