Ready for the end.

Posted by kelli1989 @kelli1989, Apr 30 7:49pm

I've had epilepsy since I was 13. I had a "normal" life then it got really bad . The 1st pill they put me on was Dylantin . And I ended up in harborview for 3 months from Steven's johnson syndrome. Where your flesh rots away. They were surprised I even lived. That's when it's started. My friends abandoned me. 36 live at home still. My best friends are mom n dad, and my neurologist dr Tsai. I haven't been able to drive since it started. It feels like my freedom has been taken away. I have the vns and they still come n go. Am I feeling sorry for myself? Or do others feel this way too.

Interested in more discussions like this? Go to the Epilepsy & Seizures Support Group.

I've been where you are, I became so despondent that it now scares me. Then, I realized the only person that could improve the quality of my life was me. My seizures are incidents, not an ongoing illness. Seizures come and go, it's the space between seizures that became my focus. A small seizure was a yay!, I beat that one.

Not being able to drive became a gift, someone else had to drive while I rested, sucks to be them. I wasn't allowed to cook for several years. Good, let someone else do the work. Unable to be alone turned into I'll always have company. I could always go into another room to be alone.

Seizures exist in the brain, it's a head game, winning the game is how you play the game. WIN!

EXCITING NEWS - I had an appointment with a neurologist at USF earlier today. There are more ways to control seizures than medication and brain surgery. There's a device that is implanted in your chest that sends impulses to a nerve to abort seizures. There's another that's inserted into your skull, it sends impulses to your brain but doesn't touch your brain.

I don't know much about the devices, it was part of my new patient evaluation. Lots of changes were made to my medication and a 3 to 5 day EEG was scheduled.

REPLY
@tonyde

I've been where you are, I became so despondent that it now scares me. Then, I realized the only person that could improve the quality of my life was me. My seizures are incidents, not an ongoing illness. Seizures come and go, it's the space between seizures that became my focus. A small seizure was a yay!, I beat that one.

Not being able to drive became a gift, someone else had to drive while I rested, sucks to be them. I wasn't allowed to cook for several years. Good, let someone else do the work. Unable to be alone turned into I'll always have company. I could always go into another room to be alone.

Seizures exist in the brain, it's a head game, winning the game is how you play the game. WIN!

EXCITING NEWS - I had an appointment with a neurologist at USF earlier today. There are more ways to control seizures than medication and brain surgery. There's a device that is implanted in your chest that sends impulses to a nerve to abort seizures. There's another that's inserted into your skull, it sends impulses to your brain but doesn't touch your brain.

I don't know much about the devices, it was part of my new patient evaluation. Lots of changes were made to my medication and a 3 to 5 day EEG was scheduled.

Jump to this post

Hi @tonyde, Good Morning
I am happy to hear you got this exciting news!
I am adding a link with information on different devices for epilepsy treatment:
https://www.epilepsy.com/treatment/devices
Happy weekend!
Chris (@santosha)

REPLY
@santosha

Hi @tonyde, Good Morning
I am happy to hear you got this exciting news!
I am adding a link with information on different devices for epilepsy treatment:
https://www.epilepsy.com/treatment/devices
Happy weekend!
Chris (@santosha)

Jump to this post

Your posts have been really helpful to so many people on this site including me. Thank you for taking the time to help.

REPLY
@tonyde

I've been where you are, I became so despondent that it now scares me. Then, I realized the only person that could improve the quality of my life was me. My seizures are incidents, not an ongoing illness. Seizures come and go, it's the space between seizures that became my focus. A small seizure was a yay!, I beat that one.

Not being able to drive became a gift, someone else had to drive while I rested, sucks to be them. I wasn't allowed to cook for several years. Good, let someone else do the work. Unable to be alone turned into I'll always have company. I could always go into another room to be alone.

Seizures exist in the brain, it's a head game, winning the game is how you play the game. WIN!

EXCITING NEWS - I had an appointment with a neurologist at USF earlier today. There are more ways to control seizures than medication and brain surgery. There's a device that is implanted in your chest that sends impulses to a nerve to abort seizures. There's another that's inserted into your skull, it sends impulses to your brain but doesn't touch your brain.

I don't know much about the devices, it was part of my new patient evaluation. Lots of changes were made to my medication and a 3 to 5 day EEG was scheduled.

Jump to this post

Love your attitude, especially your thoughts on driving. I feel the same way. Although, since I don't have to drive, I don't pay attention to the direction my driver is taking. So, when I am asked by someone who is driving me to give them directions on how to get me to a given location, I'm as useless as an ashtray on a motorcycle. No matter, I'm fine without driving.

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