Memory and balance... epilepsy or medicine?

[RunningGirl85]

Thanks to my last tonic-clonic I am currently not working, and I am finished with college, etc., so I have way too much time to peruse these boards, and while doing so I noticed a lot of people mentioning issues with memory/balance/etc. I only recently got diagnosed a couple of weeks ago, so I was just then put onto medicine (I explained this more in my introduction post in the Foyer), but I've also gone through a ton of changes in the past few weeks, so I'm wondering what is causing what at this point.

I guess my big question is this... do you think your memory or balance (if you have them) issues are more related to medicine or epilepsy? I have always had a terrible sense of direction, so that is nothing new, but I've noticed myself forgetting what I'm trying to say more and more often (as I've noticed several of you mention that you do)... I also noticed that I was misplacing things frequently, though I didn't attribute it to epilepsy at all because I hadn't even been diagnosed yet, and was only having simple partials, minus one tonic-clonic episode two years ago... My mom and I actually joked about when she came to visit me before I deployed, and I couldn't find ANYTHING, and I asked her if she was moving stuff around when I was at work, and she said no. We joked I had a "special friend" moving stuff around (actually, I seriously wondered if stuff was actually just moving on its own - I know, crazy). We were talking last night, and I was telling her about these forums, and she pointed out that that was happening a lot when she visited me... I guess that would make sense because this is right before deployment with a lot of stress/etc. going on (this was only a couple of months ago, actually). This was before I was on any medicine, but I have noticed it getting worse. Not just finding things, but I'll ask someone how to get somewhere, and they'll tell me, then I'll walk out the door, and forget two seconds later... So I'm wondering - what is the medicine's fault (Keppra) and what is just my memory getting worse? Did my last tonic-clonic have any affect on me that is making my memory worse? Is it because I've been dealing with this for LONGER that my memory is getting worse? Also, my balance... It's never been great (which, oddly enough, I was still able to do gymnastics!) , but it's also getting worse. They did notice at the hospital that I was staggering a bit afterward. Someone today asked if I was okay because he said I was "tipping" while walking (I was also extremely fuzzy-headed/detached feeling and felt like I was rambling when I was talking - similar to how I feel when I'm having an aura, but I didn't have the weird psychological sensations that I usually get, like deja vu and a rising stomach - though I had several this weekend). I also couldn't remember one of my doctor's names or where her office was today. It was pretty embarassing... I couldn't even ask where her office was because I couldn't remember her name! I also found my cell phone in my makeup bag, and my cell phone case that I use for running in an old plastic shopping bag today (looked everywhere for it yesterday). I also didn't get a ton of sleep last night... kept waking up, so that probably isn't helping me much either. Even before any type of diagnosis, I've always been super sensitive to a lack of sleep...

The medicine actually seems to be making things worse since I've only ever had three tonic-clonics in my entire life anyways, so I have no idea if it's even controlling those (I doubt I'd be having them WITHOUT the medicine)... *sigh*... Any input? Experience?

 

[RunningGirl85]

Anyone?

 

[Nakamova]

For me, balance and memory side effects have been wholly medication-related. When I've switched meds or dosages, those kinds of side effects have gone away. I only get tonic clonics (no partials), so that may be a factor. I believe that seizures that damage memory tend to be ones that originate in the temporal lobe area (also not a factor for me).

 

[RobinN]

Rebecca is a figure skater, balance has never been an issue.
Processing and memory were a problem beginning as a young child, and she received help in school to learn ways to compensate. Neurofeedback actually helped improve this for her. It was noticeable in her note taking, about half way through her therapy.

 

[RunningGirl85]

Thanks for the feedback from everyone!

I'll need to look more into that (neurofeedback). I don't seem to have issues with written things, so college/high school was not a problem, and I was always a good writer. I seem to have always had some issues with remembering what I'm trying to SAY and where I'm going/anything location-related, and THAT seems to just be getting worse (both of those things). Heck, I always struggled like crazy with geometry in high school because it was spatial, even though I was pretty awesome with some other math.

I think my seizures are temporal lobe (I thought she said she said there was abnormal activity on my right frontal lobe on my last EEG, which is only my second one, but I may have misheard her because that makes no sense to me from what I've been reading), so it would make sense I guess that memory has been getting progressively worse - especially if this has been going on longer than I have realized; however, I guess if my memory has decreased significantly since my last tonic-clonic, it's probably a result of the medicine instead of that one seizure... I'll have to ask my neurologist about that whenever I see her again.

 

[Nakamova]

You might want to ask about having a neuropsych evalutation done. It's a series of standardized cognitive and memory tests that take a few hours to do. It can be used to set a baseline to measure any future cognitive changes against, as well as indicate any specific areas that have been affected. Based on the results, the neuropsychologist can make some recommendations for strategies or workarounds that might help.

 

[acpollard2010]

i have problems with both and they i would say both meds and epilepsy the memory probably more the meds balance more the epilepsy but i agree with nakamova a neuro-psyph eval is always good to get out of the way if anything else

 

[Bluesbrkr]

I know my dizziness, memory issues (short term and not being able to come up with words I am looking for) and fatigue started with the meds. I have occasionally had extreme vertigo, the detached feeling you mention, double vision and definitely have had to work very hard to stay focused at work. All that and I still have 8 - 10 simple partials a day on average.

I've found that I can live with my current med level and the simple partials to be able to balance with the side effects which affect so many aspects of my life. I hate to be so tired that I can't play with my kids. And I'd hate not to be able to function at work, and potentially lose my job.

I know several of these type of issues can be directly due to epilepsy, but I fortunately have not had that problem with my meds in place. I think you just have to find that balance that you can live with and go with it.

 

[RunningGirl85]

Thanks a lot for your input! Some of the memory stuff was happening before I was ever diagnosed with epilepsy (though a lot of it was getting worse before this last T/C - like the example I mentioned when my mom was visiting) so I wasn't on medication. That same day I had my last T/C I was having a pretty strong aura, and someone walked in and I was trying to explain something and having a terrible time of getting my words out, and I had to apologize and say that sometimes I get "dizzy" and it's hard for me to find the right words to say (he's the same person who later found me on the floor having the seizure). That was happening sometimes BEFORE the meds, though not as bad as it was that day.

I'm actually feeling the most like myself today since I started on medicine, and the doctor recently upped my dosage of Keppra from 750 mg twice a day to 1000 mg twice a day because I was still having quite a few partials (though that might have been due to menstrual cycle changes - though I can't say for certain because I wasn't on the other dosage at the beginning of my last cycle). I haven't had any partials since I started on the higher dosage, but I know within the two hours after I take a dose, I get the dizziness/weird balance, but within a couple of hours I seem to be feeling okay. I like hearing other people's experiences though, since I don't know anybody in person who is dealing with these issues. Particularly in the military I have noticed my throat has been quite sore since my level of Keppra was upped, and I've had a general feeling of kinda ickiness. I'm hoping that goes away once I adjust to the meds... if not, I'll take the partials over feeling bleh all the time...

 

[Bluesbrkr]

Glad to hear you are having an almost normal day today. It's weird how you get the same symptoms for quite a while on different days, and then something new comes along, especially when changing dosages. A couple of nights ago, I had a weird taste in my mouth and it felt like I had eaten something really hot and burned the roof of my mouth and my tongue. My cheeks felt like cotton. I'd never had that before... strange. Anyhow, ride the tide a while till the new dosage level sets in and see how it goes. I'm definitely with you on the partials over feeling crappy.

good luck!