This video is about SUDEP, or Sudden Unexplained Death in Epilepsy Patients. It is shockingly common. (You can also watch the snow falling in Minnesota, USA, over my shoulder!)
This is how my sister passed away at 21 years old on June 16, 2023. I knew death from seizure was possible, but didn't think it was this common. My grandfather also struggles with seizures and is in rehab recovering from one right now.
This is so sad and something I hadn’t really heard about. A 19 year old boy in my town died from this about 5 years ago. I thought it was just a very rare and unfortunate occurrence. Sadly a 17 year old girl passed away 2 days ago from the same thing. I live in a VERY small town. For this to have happened twice, to young people, so close to home, it’s heartbreaking. My condolences to those in the comments who have lost loved ones this way. So sudden and so tragic…
I take Dilatin for my epilepsy and as long as keep the medicine 💊💊💊 in my system, I'm seizure free for years. But it has to be the expensive brand, not the generic brand, that one is the most common brand doctors are recommending. DON'T GET GENERIC, GET THE REAL DEAL! IT DOESN'T MATTER HOW EXPENSIVE IT IS, SAVING ON COST IS NOT WORTH YOUR LIFE!
Surely it's difficult/impossible to breathe during a tonic clonic seizure. If that continues for several minutes, would it not account for many of these sudden deaths? And if that is the mechanism, would you not expect cases of brain damage due to prolonged oxygen deprivation to be fairly common - when sufferers narrowly evade sudden death?
I'm guessing you meant "had" status epilepticus. SUDEP is clearly more linked to those with convulsions, especially when the convulsions aren't under control.
@@AndrewReevesNeurology No, I meant what I said as it happens to me every few months. And yes, the convulsions aren't under control when they occur. It happened five times last year and twice so far this year. The seizures continue until Emergency Services are shoving needles into my arms, I am usually unconscious by that time. I thought that if it happened in my sleep, that might be considered SUDEP.
Yes, frequent status epilepticus, or even just frequent convulsions, does increase the risk of death--both from status epilepticus and death from SUDEP. They aren't the same thing, of course, but both are increased in those with uncontrolled epilepsy.
John Sparks Yes it does increase chances. I have had a very long status epilepticus situation and i5 definitely increases the chances of SUDEP. Any well trained neurologist or epileptologist can confirm this for you. It’s unfortunate.
@@tomstocks8380 myself. If I don't take my meds - it's a definite seizure. If I do then there is non. I am spiritual but God created doctors too and they are here to help us. I don't believe in neglecting medicine altogether if we're spiritual.
As a child, I used to have frequent seizures despite being on medication. Once my mother switched to Dilatin ( the expensive brand, not generic) my seizures became under control and I went from frequent seizures to no seizures for years as long as I keep the medicine in my system.
