I am tied up with epilepsy for 20 years now. If I'll die of SUDEP my only regret would be that I couldn't hug and say goodbye to those who loved me...Life sometimes to unfair...
So Rough hearing this. I was that kid Growing-Up however.. Because own *Doctors* at The time (I didn't have good parents) They decided when I was 9 Years old to Stop giving me Medicine for Anti-Seizures. It got progressively worse over the Years. I had more freq. Seizures. Teachers didn't know much about it and own Parents (Both were *Alcoholics* ) never told me the full story. I've Superb Grades & Love to-Study (Educate), Learn various diff things. I have *Seizures daily* (Focal Seizures) & (Absent Seizures) That I'm aware of thus far. I time the Seizures & Check own Pulse - Most of the Seizures I'm also coincious which is not fun in of itself. And I'm still not getting the Right help. From Local Hospital or The Nation I live in...
My heart is with you all. Thank you for sharing your story
Poor lady looks shattered by grief. 😢
I’m sorry to hear of your loss. Thank you for sharing.💜
I am tied up with epilepsy for 20 years now. If I'll die of SUDEP my only regret would be that I couldn't hug and say goodbye to those who loved me...Life sometimes to unfair...
Praying for you all and yes we need more control and information about seizures and sudep
So sorry for your loss.
Poor family
So Rough hearing this.
I was that kid Growing-Up however.. Because own *Doctors* at The time (I didn't have good parents) They decided when I was 9 Years old to Stop giving me Medicine for Anti-Seizures. It got progressively worse over the Years. I had more freq. Seizures. Teachers didn't know much about it and own Parents (Both were *Alcoholics* ) never told me the full story.
I've Superb Grades & Love to-Study (Educate), Learn various diff things.
I have *Seizures daily* (Focal Seizures) & (Absent Seizures) That I'm aware of thus far. I time the Seizures & Check own Pulse - Most of the Seizures I'm also coincious which is not fun in of itself.
And I'm still not getting the Right help. From Local Hospital or The Nation I live in...
We can talk but can't end SUDEP😢
Please anyone that is over there 20's find a epitoligust they can help you so much better
Lost a dear friend to SUDEP. Autopsy showed a therapeutic dose of Tegretol in her system. No missed doses. I guess it just happens. Heartbreaking.
It is heartbreaking I have it and have had it since birth and I am 51 and still have it
😥😥😥