Re: New to this board and to Epilepsy - ?'s about memory loss
I started out of the blue also. You can find my first post probably not too far down, maybe on page two. My first one was a grand Mahl. Now I have smaller ones. I haven't heard the Epilepsy diagnosis yet, just seizure disorder.
My short term memory is pretty sketchy at times. I take Topomax. Since I am new to this whole thing, I can't comment on your meds, sorry about that.
I have just started having seizures at night that feel like deja-vu. I re-live conversations and scenes flash thu me. it is frightening when I remember it later.
Re: New to this board and to Epilepsy - ?'s about memory loss
I too am fairly new to this message board and what a god send it is. To actually find people that have experienced deja vu based episodes is soooo important to me. For the past 22 some odd years I have honestly thought I was just crazy.
Sorry to hear your seizures have sounded like they have become more intense. I only get the deja vu type (identified on here as simple partial seizures, I believe). I get a horrendous gag reflex and become very fatigued. My seizures do affect my short term memory. Within an hour of my seizure I won't really remember if I had one or not.....or did I just have a memory of one. Mine started at about 16. In the past 2 months they have hit an alltime high of 6 a day for a stretch of 6 days. My doctor has scheduled me for a new round of testing which is comforting.
I attend group therapy for some horrific events that have happened in my life. My doctors there are wondering if my seizures are emotions based.....i.e. if I can't express my emotions or try to suppress them, my body takes over. I do know that in the past stress has been a contributing factor.
So my advice.......try to limit your anxiety..........seek out the best in medical attention........reach out to those around you.........start talking about how seizures make you feel.....what your fears are.......
Everything you have described is real. Worrying about short term memory loss will not make it better. I look at it as, I probably didn't need to remember it. I have had to explain to those close to me that I do have poor short term memory due to medical issues. They tend to give me a break.
Re: New to this board and to Epilepsy - ?'s about memory loss
I had about 6 months of seizures a couple of years ago. I haven't had any since. However, after those few months...I seemed to have lost a good chunk of my memory, and I've always been known to have an amazing memory, with all sorts of small details from way back. There are trips I took maybe only 5 years ago, that I now only vaguely remember. It's kind of sad. It isn't like I don't remember anything, just certain things, like the trips. I am also a student, and after I had the seizures and went on the meds (tegretol) I started failing my exams. I don't think I'm going to be able to finish the program.
Re: New to this board and to Epilepsy - ?'s about memory loss
I just saw this message board for the first time today while looking for the side effects of tegritol. Memory loss, to quote my wife " Living with you is like 50 first dates" every day is a new experieince. We were at a restaurant and I asked her why we didn't come here before, she said we were here before at the same table.
I started out with partial seizures 29 years ago that came from nowhere that progressed to full blown gran mal siezures. I've been on every drug on the market. I started out with tegritol up to 500 mg now un believably siezure free for 3 months after being put back on tegritol at 800 mg after 22 yrs. If I only knew what 300Mg difference would make.
Many times I didn't even know I had a partial siezure unless someone told me. I would just stop whatever I was doing for 20 seconds and pick up right where I left off. The first occurance was when I totaled a car ending up in a creek, then I totaled a truck I borrowed from work wrapping it around a tree. When they were about to release me from the hospital,I said somethings not right, I don't remember the accident, only being in the ambulance and it's happened before. They did some tests and found out I have epilepsy. I could write a book. The only real way to know whats going on is to check into a major hospital with an epilepsy monitoring unit. They hook you up electronically and on video 24hrs a day until you have a siezure. The key is get a good neurologist. Good Luck
Re: New to this board and to Epilepsy - ?'s about memory loss
I had my first seizure for no apparent reason, when I was 15yrs old. It was a grand mal and it left me with a horrifying headache, I was vomiting everywhere and I too, had absolutely no memory of what had happened.
That was 16 yrs ago and I have to say that my short term memory is fair at best these days, and my long term is just about gone... I can hardly remember my girls' childhoods (8&11yrs.) I don't know what wiped out the memory more, the seizures or the medications.
It's scary until you find meds that work, there are so many out there, don't settle if you don't have to for meds that make you miserable.
