Epilepsy

[Susumarie]

I was diagnosed with complex-partial seizures about 9 years ago; my episodes began with an occurrence where it was like I woke up and the past week was gone from my memory. Since then, when I have had seizures where I have lost consciousness, I have had memory losses of a few days to a week. My last seizure where I was out of commission for 20 minutes or so, caused me to lose all memory of a trip I took to Australia 6 months ago. My neurologist discounts any comments of memory loss. Does anyone else have memory problems associated w/ seizures?

[Lazyland]

I have seizures with memory loss. They are infrequent, but during them I behave unusually, cursing and am agitated. They last one to two minutes and afterwards I can sometimes recall parts of them as if it were a dream. But usually nothing, and even that little bit I only recall if someone who is with me tells me I just had an event. These events are not the kind of seizures I had a decade ago.

The amount of memory loss you are having sounds very serious, and if your neurologist is not attending to that issue ask him for a referral to another doctor, perhaps one with more experience with epilepsy or complex seizures. There are many specialties in neurology and his may not be a good fit with your problems. Is he close to your age? Communication with doctors is difficult, more so with older ones trained in a certain kind of professionalism. Demand things from your doctor, don't be passive, ask specifically.

Losing chunks of time not related to when you have a seizure sounds pretty scary.

Sam

[marthaandbill]

That is amazing ...

I have had Epilepsy forever, and I have had treatment and testing done in Pittsburgh, PA.

I recently changed to the Cleveland Clinic. They are absolutely excellent in this field !

Every neurologist, nurse, counselor, etc stresses to me that the seizures / seizure activity causes memory loss ... ESPECIALLY SHORT TERM !!!!!!!

I absolutely believe this - I am living with it ...

You need to check for other opinions ! Your neurologist is incorrect.

Good Luck !

William N. Benoit
[moderator note: e-mail address has been removed]

[Susumarie]

God bless you William!! I am wondering if I am just nuts (one of the comments from my present neurologist -- "It's probably just in your head"). I haven't heard anyone else have a problem with memory, you're my first connection.
I live in Oklahoma, but my daughter has gotten me an appointment at UCLA in a month. Don't think that will really make any difference, but I've run out of choices here, so if I find someone I feel like might actually be listening to me, I can always use appointments out there as regular visits to my daughter.
Just how bad are your memory losses? In the past, I would lose a few days; my first episode was actually a week. However, with my latest (and probably because I had tapered myself off my meds, as they made me stupid, and had a hard time at work), I completely lost all memory of a vacation trip I took 6 months ago, and also for about a week after, I did things and had conversations I have no memory of. I'm complex-partial, and when I do go out, it's usually just a day or so goes with it, so this was way off the scope.
Have another issue I want to bring up, but will put it under another topic.

[marthaandbill]

Thanks for the reply. Cleveland Clinic stressed memory loss with me at every appointment. I went though a battery of tests where I had to recall words, numbers, pictures, order of items, etc.

I had a very difficult time with this - nobody was surprised at all.

My short term memory is affected much more than long term. I can remember items, stories, etc from years ago - 30 or more ... but I may not be able to remember the name of a TV show that I always watch each week.

My wife was explaining my diagnosis to me (where the problem was, what it was, etc.) I could not remember left temporal lobe at all - even if she just had mentioned it ...

My doctors said that Topomax could have something to do with the memory loss, BUT THAT IT IS DEFINITELY A SEIZURE THING !

I HAVE SINCE BEEN TAKEN OFF OF THE TOPOMAX, BUT I REALLY STILL HAVE THE SAME MEMORY PROBLEMS AS BEFORE ...

My memory loss does not just come and go. The (short term) loss is there each day in some form.

My doctors said that the temporal lobe is where short term memory function is located - and that the long term memory loss would hardly be affected ...

Hope this helps !

[Susumarie]

William: what type of seizures do you have? And have they ever seen anything on MRIs or EEGs? I've just switched off Topomax (4 days off it now) in hopes I will be able to speak better -- my job involves talking in front of groups, and constantly had the problem of coming up with words; nowhere near as bad when I first started Topomax.
When I have seizures where I lose consciousness, or just completely lose awareness, I always have a memory loss of at least a couple days -- does that sound like your experiences? With my last episode, though, I lost all memory of a trip I took 6 months ago -- does that sound like something w/i your doctor's descriptions?
I do have an appointment at UCLA next month; don't know how they compare w/ Cleveland or any other more reknown place, but anything is a step up for me (my present dr. told me people shouldn't be medication hopping, I shouldn't look things up on the internet, and it was probably all in my head -- duh)

[marthaandbill]

My seizures began as complex partials in 1998.

On the MRIs, they saw a lesion ... indicating that it was definitely abnormal.

On the EEGs, they actual could see the brain waves going through seizure activity. This was when I was monitored all night with electrodes on the brian.

They also put the electrodes just on my scalp and the same seizure activity showed up ...

They took me off the medicine for testing, I lost awareness and memories of the experience completely ...

Even during the complex partials, i would lose awareness for that time period, not for days ...

Good Luck ...

[Susumarie]

My MRIs, CTscans & EEGs have never shown anything -- yet everyone else seems to have something. Strongly dislike my current neuro, especially when he states "it's probably all in your head". But since I seem very abnormal, makes me wonder; yet how could I exhibit such classic signs, and just be making it up -- especially since I'd never heard of any of any of this stuff till I started losing it? Wish I could find someone that is like me so I wouldn't feel so stupid!