posted
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.
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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
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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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.
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
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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
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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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.
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