Connect
← Return to Living with epilepsy - Introduce yourself & meet others
Discussion
Living with epilepsy - Introduce yourself & meet others
Epilepsy & Seizures | Last Active: Jun 29, 2023 | Replies (462)Comment receiving replies
My concern is with the cumulative effect of seizures. I am noticing a loss of memory, the ability to focus and the need for naps. It is hard to tell if this is due to the seizures, the medicine or something else including aging. It is extremely hard for me to tell when I have a "twitch" since effectively I am not there but if I have averaged 5 a day for 58 years the number of seizures is in excess of 100,000. While the symptoms did end my career early I do recognize the severity of my seizures in no way compares to anyone else who has posted here. Thanks for your time.
Replies to "My concern is with the cumulative effect of seizures. I am noticing a loss of memory,..."
Connect
@mxyzptlk32
Hi there,
First, I’m curious about your user name. Does it have some special significance you’d be willing to share?
Second, i’m sorry that I just now saw your post. My email notifications don’t seem to be working any longer, I suspect it’s some of Apple’s handiwork.
Age 7 huh, wow 58 years, the fun never stops but at least it improved in your case. It’s always heartwarming to hear when someone gets control of their seizures.
Thank you for sharing your story. You mentioned,
“my seizures in no way compares to anyone else who has posted here.” I disagree with your statement. Epilepsy is a very personalized condition and it affects everyone differently. I believe your story has great significance to a lot of people and again I thank you for sharing it with us.
I’m sure glad sugar wasn’t a trigger for me, I’m a sugarholic.
Your concerns for cumulative concerns are certainly valid ones, memory focus and being tired as I imagine you already know are all side effects of both seizures and the medication, virtually everyone I have ever talked to complains about these same issues. I have had Epilepsy since I was 14 or 15. I had always thought it started at age 15 but I found some records that are dated from the fall of 1966 at which time I would’ve been 14. My memory is also shot, I have no memory of my childhood. At age 15 I was in a coma for 8 months from convulsive status epilepticus and my memory was totally wiped out (retrograde amnesia) and none of that has ever returned. But that was only the first of 8 or nine more comas to come, some with more devastating consequences.
I was wondering a couple of things if you don’t mind humoring me.
1. What was your experience like with phenobarbital, did it ever help you?
2. If you ever took generic meds did you ever pay any attention to whether or not your pharmacy changed manufacturers since your previous prescription pick-up? If so did it aggravate your seizures?
Has your doctor diagnosed your twitches as some form of Myoclonus, simple or complex partials (Focal Aware or Impaired,) Myoclonic jerks or Myoclonic seizures?
Take care,
Jake