Also, Nancy, I forgot to say"026 that I could very well be the one calling them absence seizures since I thought people with seizures either had the grand mal type (where those around you are aware that you're having a seizure), OR absence seizures"026 where no one around you knows you're having a seizure, & neither do you when you're in the middle of having one. I was thinking that any type of seizure you may have that is unknown to you or those around you, I was thinking those were considered absence seizures no matter where in the brain they begin. But clearly, I know very little about seizures as I have only started having them in the last few years. What little I know about what's going on with ME, is that my symptoms are virtually identical to TLE symptoms"026 and that no one around me is aware when something is wrong. And even I am not aware until later when I try to recall certain thingsView Thread
Well, the fact that my memory has been severely affected by whatever type of seizure is going on, I'm sure I can't remember the exact wording used by my doctors to describe what's going on, & may even be confusing it with things I've read in doing research of the various types of seizures. And it's possible that I am confusing the different things my doc has wondered aloud, and that I have incorrectly assumed those things were related to each other. I DO remember though, that in my abnormal EEG (the one that's only 15-20mins long), is that the abnormal activity was seen in the temporal lobe, & as soon as I read your "anterior temporal lobe" part, I immediately remembered that being on my report as well. I have googled the temporal lobe & looked for anything that distinguished the different "areas" of the temporal lobe, but couldn't find any info other than them referring to the entire temporal lobe. Of course, I still haven't figured out what this means for ME, or what they think is going on during that "abnormal" activity (I mean, obviously I''m not having a grand mal or my family/friends would've told me by now--LOL).View Thread
Hi all! It has been so long since I have posted hereâ€¦ every time I tried to find where the board was that I had found a while backâ€¦ I couldn't find it. I didn't remember that it was here at WebMDâ€¦ first place I should've looked. LOL
Anywhoâ€¦ I had a quick question for those of you have been through a Video EEG (the week long in-hospital one). I am just finishing up my VEEG, after 7 days (they wanted longer but I was about to lose it & about to buy myself a ticket to the psych ward--haha). But the reason I was even sent to the epileptologist was b/c of an abnormal EEG (the 20 minute version). And my symptoms fit perfectly with temporal lobe seizures (absence seizures). I mean, to a "T", the doc said (and also what I've read in doing some reading/research on it). What I'm confused about is the fact that after 7 days, & a few symptoms, still nothing has shown upâ€¦ even with the same test they did in the regular EEG that showed it was abnormal. It was the hyperventilation part of the EEG that showed possible seizure activity. The symptoms I have had while here, weren't major. They were things that are considered auras & possibly weren't followed by a seizure b/c I didn't have an gaps in time or anything.
And while I know that there are plenty of seizure patients who have normal EEGs, but just wondered if anyone had any first-hand experience with this type of thing & whether they usually stick with a diagnosis of seizures or is there something else that can cause an abnormal EEG? I haven't found much info on what else COULD cause an abnormal resultâ€¦ or mimic the symptoms of TLE on top of the abnormal EEG. I really wanted a clear-cut result so I can quit saying "if this is seizures". I'm just confused about it.
Also, on the medication subjectâ€¦ while here, they took me off the lamictal I was on, to see if I'd start having episodes. The one thing I did notice & I don't know if it's common eitherâ€¦ as soon as they stopped the lamictal, I started having really strong twitchesâ€¦ arms, legs, torso, etc. It feels like when they check your reflexes & you have no control over it, it just happens & in lightning speed (before you can even tense up to stop itâ€¦ although, I can feel it coming in the split second beforeâ€¦ it's very bizarre). But it makes me laugh, just like when they do my knee or footâ€¦b/c it's just bizarre to feel your body do something that you didn't TELL it to. LOL Anyway, I wasn't sure if anyone knew much about that. The twitches have calmed down quite a bit since they put me back on it this morning (and night too). It also causes me to twitch when they touch my arms while my eyes are closedâ€¦ which I think they called the startle response. I've never felt that before. So, just checking in for any insight you guys might have. Hope you all are doing well, & hope to stick around more this timeâ€¦ and I bookmarked the forum so I won't forget how to get BACK here. haha Thanks, ~KimView Thread
Hi there! Of course, the title of your post caught my eye b/c I have the same issue w/ memory. It took MY docs about a year to finally say I "might be" having seizures...but I thought I was either losing my mind, or had early alzheimer's. LOL I am only 37, &I couldn't get the docs to understand that as patients, WE know better than any test how our brains/memory work. I know what my "typical" memory retention is. I also have ADD, but I knew this was NOT my usual ADD symptoms. I would be missing chunks of time, & I do NOT have multiple personalities. LOL Finally, I had an "abnormal" EEG & that led to the "probable seizures".
But I think our experiences say WAY more than any research article any of us could ever come across...& believe me, I've looked up nearly everything I can think of on memory related seizures. And like Candi said, especially if your seizures are located mainly in the temporal lobe, then your memory certainly WOULD be an issue. That's where mine are, & sometimes I lose small chunks of time (remembering only bits & pieces of an event, or day). And then there are times where I just can't hold onto the info for very long.
If you've had seizures for as long you have, does that also mean you have been on medication for that long also? I ask that b/c maybe it's that you now need a different medication. You could be having absence seizures (or any type of seizure), if you're not aware of even having them (like I do). So, I think you could be having small seizures & not even know it. Either that, or like Candi mentioned, it could be your seizure meds causing some memory problems. That's one thing I am still struggling to understand... why a med that is supposed to HELP, could be causing the problem too. LOL
Last comment... but I have been told that you can lose a chunk of time when you are HAVING a seizure, but also lose some of the time FOLLOWING the seizure as well. But if this is different/new, I'd say it's time to see your doc, & maybe discuss if any changes to your meds need to be made... just my thoughts. View Thread
I agree with Angie! I have heard that SO many people get denied the first time (my mom got denied the first time also). Then she found a lawyer who deals with denials all the time, & he got it approved. So, don't get discouraged. If you can't work AND can't drive, there's no reason they should deny you. Also, if they think it's a temporary problem, possibly fixed my medication, they might be expecting that you could go back to work. But what they DON'T know, is that it could've affected your ability to GET another job, at this point. So, I think you should qualify, either way.
But like Angie, I have heard of people having issues when they switch over. That doesn't help the driving issue, b/c of course they require you to be seizure-free for a certain amount of time. But there should be exceptions to that rule... b/c lots of people (I imagine) have that problem when switching over. Many hugs, & definitely follow up on tht disability! ~KimView Thread
Wow, Ed! I am so sorry to hear that! Did he just stop your Dilantin & THEN put you on Keppra??? I was under the impression you should never stop ONE medication until you've tapered up on the new one. But maybe dilantin w/ keppra doesn't work that way, I don't know. That's why I'm still on keppra, while my doctor slowly increases my dosage of Lamictal.
I agree though, if you can't drive/work, you SHOULD be able to get disability. I say you should find a new lawyer, one that is used to dealing with cases of disability being denied. Thankfully, I don't have full-on grand mal/convulsive seizures... and thankfully, I don't live in a state that requires doctors to report someone's seizure diagnosis to the DMV/RMV, b/c I just started my own business & can't stop driving at this point. Let me be clear though, i do NOT advocate doing that! LOL But I would think if they get your seizures under control, you should be able to drive, & work... no? I don't know how all that works though. Hope they figure out your meds soon!!! ~KimView Thread
Yeah, I just wondered about "brain changes" being the cause of these changes. I know if you have seizures for a while & they aren't treated, it could change things in your brain, or if the electrical signals are getting messed up in certain areas, it could cause these changes. And I don't mean that I count on my fingers anymore (LOL), but if I'm having a conversation with someone & I'm listing 3-4 things, I use my fingers to say "okay, 1-I don't need to, 2-I don't want to, and 3-I don't WANT to". That kind of counting on your fingers. And i noticed that I don't start that on my index finger anymore, I start with my thumb, which most Americans start with their index finger. I just thought it was weird. LOL I DO have a lot of the "typical" temporal lobe symptoms, & some of it correlates to either damage to that area of the brain, or the signals constantly getting "crossed" in that area. So, these days, I wonder how many of the "little things" are even related.
OH, that does remind me of one other question. I've read that a lot of people get an "aura" of a strange sensation in their stomach/chest. Any of you have experience with that? I do have acid reflux, so I always chalked up the weird "spasm things" in my upper abdomen, then my chest, to a spasm of some sort related to my acid reflux. But I've never heard anyone describe that feeling in their chest/stomach before. So, again, I was just curious.
I WILL say, that I have stopped drinking Mio water flavoring, after seeing you guys mention that Splenda is a big trigger. Mio is the ONLY thing I knowingly eat that has spenda in it. I am against artificial sweeteners, so I was devastated when I found out its sweetener was splenda. LOL But now I'm re-evaluating my entire diet too...hence the elimination diet. Maybe I will find certain foods/etc that make my memory/episodes worse
Anywho... I'm doing it again... rambling. LOL I'll hush now & see if I can get some work done! HOpe you all are having a great weekend! ~KimView Thread
Thanks for being okay with my rambling. LOL But I'll keep this one short. I was trying to think of some of the specific things I've noticed that have changed, but now I can't remember half of them. LOL
But have you guys ever heard of people with seizures "losing" their sense of humor (to a certain degree)? It sounds weird, but I don't know if it's b/c I'm easily confused these days, & so jokes are just confusing to me, but a lot of the time I find that I don't see the joke...even with people I know I have a similar sense of humor to. It's almost like someone says "Listen up, I'm about to tell you the funniest joke ever!", & then they say "You know what??? All stop signs are red! Hahaha, isn't that the funniest thing you've ever heard?!". And I'm like "Uhhh, I don't get what's funny". LOL I don't know if it's just ME, or if that could be symptom of seizures. Sounds weird, I know.
The only other one I can remember I wanted to ask you guys... and this one DOES sound weird. I want to research what parts of the brain are responsible for what (b/c I know some of the things the temporal lobe are responsible for). But I've noticed that I don't count on my fingers the same way I used to. And no one I know counts like I do now. I used to count the "American way", where if you're listing things & counting them on your fingers, you start #1 with your index finger... right? Well, now I've noticed I do it the "European way", or "French way", I'm not sure...but I start with my thumb as #1, THEN my index finger. I really feel like that is off teh wall to ask, but no one I know counts with their thumb first, so it's not like I picked it up from someone.
If I remember the other things I was curious about, I'll post them later, but those are the first two I could think of. Hope you guys are doing well, & enjoying the weekend! ~KimView Thread