Sudep | MyEpilepsyTeam

Connect with others who understand.

sign up Log in
Resources
About MyEpilepsyTeam
Powered By
Real members of MyEpilepsyTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
Sudep
A MyEpilepsyTeam Member asked a question πŸ’­

Hard subject to bring up but has a doctor ever discussed it if not how did you find out

posted May 7, 2020
β€’
View reactions
A MyEpilepsyTeam Member

I've had Epilepsy ,in various forms for 42 years No one has ever mentioned it I read about it on Google

posted May 8, 2020
A MyEpilepsyTeam Member

No, I had to figure out it was a thing where the % increased w my seizure type (myoclonic), especially so because it isn't well controlled.
Every time I've brought it up for discussion, I pretty much get the dismissive hand gesture, along w something to the effect that I have nothing to worry about.

Except my myoclonoc seizures aren't well controlled, and sleeping skyrockets the risk. So does PCOS, which I also have and am not on hormones yet.

My biggest reason for being afraid? I live alone

posted May 9, 2020
A MyEpilepsyTeam Member

I found out when my oldest niece passed from it in 2013. I'm still learning about it specifically

posted May 7, 2020

Related content

View All
My 18-year-old Daughter Has Had Nocturnal, Tonic Clonic Seizures. Very Scary. Any Suggestions For Helping Her Stay Safe?
A MyEpilepsyTeam Member asked a question πŸ’­
SUDEP
A MyEpilepsyTeam Member asked a question πŸ’­
Does Anyone Know About Us People With Epilepsy If It’s True That We Can Pass Away Quicker Than Someone Without Epilepsy?
A MyEpilepsyTeam Member asked a question πŸ’­
Continue with Facebook
Continue with Google
Lock Icon Your privacy is our priority. By continuing, you accept our Terms of use, and our Health Data and Privacy policies.
Already a Member? Log in