radisyn
New
- Messages
- 11
- Reaction score
- 0
- Points
- 0
Hi there, folks -
My name is Madisyn, I'm 21 years old and I've been diagnosed with epilepsy for three years since I had my first (of seven) seizures when I was 18.
I've got a good support system, but I haven't spoken with any epileptics ever as far as I recall. So, I'm curious what peoples' general experiences are; what are your auras like (if you have any that you recall)?
Some of the many questions I've had: Have you ever been able to "stop" a seizure, and how does that work for you? What's the worst seizure-related injury you've sustained? What activities have you stopped doing since you've been diagnosed? Has it changed your activities? Do you drink? Do any drugs? Did you do so and then stop after being diagnosed? Would you say your epilepsy is "controlled"? Do you tell many people? Like, how long after you meet someone/make a friend do you wait to tell them? Do you worry about how people view you when they find out? Would you say you have a particularly manic mind/ADD-ish attributes? (I ask because I feel I do and I wonder if it is a theme with epileptics...) Have you noticed how little neurologists generally know about epilepsy? Like, how different everyone is and how even individual cases are not well understood? What meds do you take? How do they affect your behavior (if at all)? Have you incorporated "epileptic" into your self-image (as in, do you define yourself partially by it, and if not how do you avoid thinking in such a way)?
I have lots of questions apparently, which I'm just now realizing... if you have any thoughts I'd love to hear them. This is my first time ever expressing any of these worries/questions, so anything you know/think will be helpful and interesting to me.
Thanks for you time and attention!
Madisyn
My name is Madisyn, I'm 21 years old and I've been diagnosed with epilepsy for three years since I had my first (of seven) seizures when I was 18.
I've got a good support system, but I haven't spoken with any epileptics ever as far as I recall. So, I'm curious what peoples' general experiences are; what are your auras like (if you have any that you recall)?
Some of the many questions I've had: Have you ever been able to "stop" a seizure, and how does that work for you? What's the worst seizure-related injury you've sustained? What activities have you stopped doing since you've been diagnosed? Has it changed your activities? Do you drink? Do any drugs? Did you do so and then stop after being diagnosed? Would you say your epilepsy is "controlled"? Do you tell many people? Like, how long after you meet someone/make a friend do you wait to tell them? Do you worry about how people view you when they find out? Would you say you have a particularly manic mind/ADD-ish attributes? (I ask because I feel I do and I wonder if it is a theme with epileptics...) Have you noticed how little neurologists generally know about epilepsy? Like, how different everyone is and how even individual cases are not well understood? What meds do you take? How do they affect your behavior (if at all)? Have you incorporated "epileptic" into your self-image (as in, do you define yourself partially by it, and if not how do you avoid thinking in such a way)?
I have lots of questions apparently, which I'm just now realizing... if you have any thoughts I'd love to hear them. This is my first time ever expressing any of these worries/questions, so anything you know/think will be helpful and interesting to me.
Thanks for you time and attention!
Madisyn
Last edited: