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@jakedduck1

@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

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Replies to "@mxyzptlk32 Hi there, First, I’m curious about your user name. Does it have some special significance..."

Hello Jake,
Actually one of your earlier posts encouraged me to share.

Anyway, the user name, Mxyzptlk was a character in DC comic books that pestered Superman. You can search the net if you haven't already for more info. I got started reading early because of comic books. What can I say? I like books with pictures, as Forrest Gump said "and that's all I have to say about that". My brother was always amazed I knew who Nostradamus was because of a comic book.

Sugar: hypoglycemic for me. I eat more sugar now than when I was a kid, which still isn't much. I am lucky in the sense I like fruits vegetables, meat and potatoes.

58 years: Yes I was walking home from school and had my first grand mal(tonic clonic). I banged into a tree in our neighbors yard. That is all I remember of the first incident. The only potential reason I ever heard for the onset was I had all of the childhood diseases one on top of the other. I wasn't extremely sick with them but it was the only thing that had happened to me out of the ordinary.

Memory: mine is slowly fading I think. It is very hard to say what causes it because it could be age. I don't figure epilepsy is helping though. I have never been in a coma and no great blanks as far as I can tell. Although there are things I did in childhood that my brother remembers and I don't. I could chalk that up to what leaves an impression on one person but not another. Once told to me I seem to remember it but I have an active imagination too. It could just be me filling in the blanks.

Humoring you, I don't mind:
1) phenobarbital was the first medicine they put me on. About all I remember about that is the nasty bitter taste from the white quarter inch cube. That is what I mean about my memory. I wasn't on the phenobarbital long. It must have been about that time they discovered barbiturates wasn't a good thing and took me off of it. I believe my next medicine was depakene(valproic acid) and I was on that for years. It is possible I was on something between the phenobarbital and the depakene. I do remember being put in the hospital when I was in the 4th grade because I was tired. My Mom was no one to get in the way of so when she said she wanted some tests that is what happened. I don't think phenobarbital was any better or worse than anything else I have tried.

2) Generic drugs I have bounced around with no problems. My symptoms are so mild it doesn't seem to matter. I have had less than 10 tonic clonic seizures in my life. I had 3 between ages 7 and 16. I didn't have another until 9 or 10 years ago and those were induced (accidentally) by steroids. They tried to treat my ITP with steroids. I was on 60mg of dexamethasone for too long of a time. I have been told that is enough for a horse. My wife and grown daughters were there to witness it. It was the first time they had seen me have a tonic clonic. I am guessing it affected them more than it did me. They knew I had epilepsy but other than the "twitches" it was more a bit of knowledge than real.

My diagnosis is complex partial. I hadn't heard the word Myoclonus before I read it here. It is an apt description of my twitches though. I will see what my nurse says when I talk to her next. I told her about it over the phone and my reaction to what she was saying is it is possibly the Vimpat I am taking.

Focal aware or impaired: impaired, blank stare, stop right in the middle of a sentence then start again when it is over. Most last the time it takes you to flip a light switch. To the untrained eye, nothing happened. What I call "harder" ones I suspect are longer in duration and cause my head to bob. I have very few "hard" ones. When I have more of them I can trace it right back to a lack of sleep. By lack of sleep I mean several nights running, maybe a week. Sometimes I get an interesting feeling on my head as if someone has placed a hand on my forehead. That is when I know I am really tired.

Good to talk to you.