Anyone have and want to talk about status epilepticus?

@lizadiane64,
I am very sorry to hear about your son's death. It must have been terrible for you and his father. But please, do not blame yourselves for what has happened. I do believe that there is a right time for everyone of us to leave back to the universe.
Unfortunately, all of us with epilepsy have a certain risk of getting into a status epilepticus. Before I experienced this myself for the first time last December, status epilepticus was something unimaginable in my situation. My seizures before this status epilepticus were focal seizures and were well-controlled. But all of a sudden, I had two clonic seizures in a week of stress, and one of them led me to this status epilepticus. This condition can pop up at any time, and without much warning. This is why epilepsy is many times called an invisible condition.
When I had my first status epilepticus last December, I could have been just by myself. I can not demand my husband to be with me all the time. I would also not feel well with it, I need my freedom. But for some higher reason my husband was next to me. It was not my time to go back to the universe. And if he hadn't been next to me at this moment, I would never have blamed him!
With love,
Chris (@santosha)

@sheelah
Hello @lizadiane64
How sad that your family had to experience this tragedy. I have had many episodes of Convulsive Status Epilepticus but have been very fortunate. Usually the doctors were able to stop the seizures with drugs but I also had to be put into medically induced comas many times. My first and longest coma episode was in 1966-67 for 8 months.
I was in quite a few other induced coma's but they didn't last as long.
There's is also a condition known as S.U.DE.P. (Sudden Unexpected Death in Epilepsy. Many if not most doctors never discuss this usually always deadly condition with their patients or Status. I think physicians should be required to and give rescue medicine and to disclose this information to people with epilepsy who are at risk for either condition. Convulsive Status Epilepticus is a medical emergency requiring immediate medical intervention to stop the seizures. If someone is having a seizure and you're not familiar with their seizure pattern/history, they should be taken to a hospital if the seizure last more than five minutes. If someone is familiar with a persons seizure pattern/history and a seizure lasts more than one to two minutes, they also should be immediately taken to a hospital for medical intervention. The longer a seizure continues the less likely they will stop on there own.
My condolences,
Jake

Thank you.

Okay I'm glad you didn't.

@lizadiane64
@jakedduck1
Jake has well mentioned SUDEP, a condition that very few doctors expose to their patients.
I have copied here a link with more information on SUDEP, what it is and how it occurs:
https://www.epilepsy.com/complications-risks/early-death-sudep
Chris (@santosha)

I hope the following helps a little. There's nothing I can state in words to replace your son, but I do have empathy for your family. Myself having epilepsy, I have hope that with faith I will end up in a place where I no longer have to endure all the inconveniences, prejudice, etc. that comes with a life with seizures. I feel comfortable stating that your family might experience some peace of mind in hoping he is now truly happy. I wish I could say more. My best.

Thank you. I too have had a TBI and partial seizures for over 25 years. The new neurologists try to tell me that these aren't seizures even though they show up on EEGs because I don't lose consciousness. And try to treat it as if it's a trauma response rather than a head injury. It's really demeaning and belittling. Funny thing is I quit my meds and told her (since she claimed partial seizures aren't real) and she flipped out and called a nurse advocate and they forced me to take the medicine. Young and inexperienced is what this gal is... I wish I hadn't moved away from the neurologist who saved my life when I had my TBI.