Questions & Answers

Everytime I talk to someone about my seizures or my experiences with epilepsy, they say “oh I’m sorry, I understand what your going through.” I just look at them and think to myself “No you don’t. You don’t know what it’s like to not have control over your body and shake uncontrollably. You don’t know what it’s like to live every day scared that at any moment you could have a seizure.” They are better off just being quiet or at least say something like “I don’t know what to say or just try to be… read more

This morning I had one of my larger seizures. They call it complex partial. Which means I go completely knumb from the waist down and also some jerking in my arms. I had to crawl to the couch and pick myself up and lay down. Happy I have a lot of upper body strengh. Been very angry since. Also very depressed. Anyone else get like this after having one?

A teammate has these symptoms because of depression/anxiety and wants to know if you have them and how you deal with them.

Do you ever deal with people that tell you that the struggle is psychological instead of real as they don't understand how seizures look outside of the convulsions? How do you manage your depression without antidepressants due to the lowered seizure threshold?

NOTE: She has what is called Focal Cortical Dysplasia Type 1B. She has had brain surgery on my left temporal… read more

So since upping my dose of Fycompa I’ve struggled to walk in a straight line, walk into things and stagger when walking. I also dribble when talking and when sitting still. I wonder if the two are linked or I’m just being overprecautious?
Any experience would be highly appreciated 💕

A relative of mine came up to me, wanting understand more about epilepsy and applying for Social Security. She new I about my Epilepsy, and the basics of it. She has got to know and become friends with Epilepsy. She needed deeper info so she can help her friend
out better. This lady has no work experience, know minimal life skills and has a husband in worse shape than her. He has spinal Bifida , been in and out of the hospital . She is living off his SSDI and doesn’t know or realize that if she… read more

On average how much sleep do you get at night and during the day?

How did it work for you? Any strong side effects? I will be starting it soon, just want to know if anyone has any experience with it.

So, basically, I just realized that the midazolam makes me feel more negative. I take it to stop gran mals, but it just occurred to me that it’s making me feel bad, even though I never understood before why I felt that way.

Does anyone wake up early wondering where life went wrong?