I think I'm having a nervous breakdown right now. My 24-hour EEG came back 'normal', and I crashed my car back in December. If you remember, I was unable to respond to my neighbor who was freaking out on me while I was crashing. I also wake up having seizures...memory problems, confusion that lasts for hours afterwards. Atonic 'leg collapse' seizures as well, though not as frequent, and I have a scar on my knee to prove it.
I've read that partial or absence seizures are hard to pick up on an EEG...and I had no 'events' during it...but I'm very concerned that the neurologist was ready to just send me on my merry way?
What next? Do I request a prolactin test? I forget who told me this, but apparently an elevated prolactin after an 'event' can prove seizures?
Which brings me to my next question...are they going to require I 'prove' my seizures, just like they are making me do the impossible with my chronic Lyme, before they put me on seizure meds?
I've only had 3 seizures since that one in December. What are the chances that a 48- or 72-hour EEG will pick anything up if they are that infrequent? Infrequent or not though, all it takes is one to crash my car again.
Posted by Lymetoo (Member # 743) on :
So you're not on anti-seizure meds now?? I think it IS hard to pick them up on an EEG unless you are having an event. This is what I've heard.
Wasn't your seizure "documented" at the time of your crash??
Posted by kday (Member # 22234) on :
Negative EEG doesn't mean anything.
My opinion.
Posted by seibertneurolyme (Member # 6416) on :
Try to get your LLMD or PCP to prescribe a seizure med. But you need to be aware that for many lyme patients these meds may not work or it may take a lot of trial and error to find one that works for you.
As for more testing -- I probably would not spend the time or money. You may or may not be having true seizures -- it could simply be episodes of encephalopathy. And the more you push for a diagnosis the more likely some neuro will label you with pseudoseizures -- which will just complicate things even further.
This is not medical advice, just my opinion based on hubby's experiences.
Bea Seibert
Posted by elizzza811 (Member # 24713) on :
No, no seizure meds yet.
And my seizures were witnessed. My neighbor obviously saw the first seizure, and I had my second in front of paramedics...but all they really did was make sure I wasn't having a heart attack. I mean, I wasn't thrashing around or anything...nothing like that...just a dizzy spell.
This is getting scary and I feel as helpless as I did a few years ago...near death, yet no one will listen.
I have an appointment next Wednesday with this neuro, and I can already tell I'm going to lose it in front of her.
Posted by Carol in PA (Member # 5338) on :
quote:Originally posted by elizzza811: What next? Do I request a prolactin test? I forget who told me this, but apparently an elevated prolactin after an 'event' can prove seizures?
Don't bother with this, as a test two months after the seizure won't show anything.
Also, before you mention this to the neurologist, make sure you have a study in hand.
If this is not a proven thing and or part of the standard of care, he won't listen.
Carol
Posted by elizzza811 (Member # 24713) on :
No, what I'm saying is I'd like a slip for a prolactin level, so that NEXT time I have one of these episodes (seizures), my neighbor can run me to a lab immediately so that I can prove I just had one.