We saw the neurologist today. He spent a good bit of time with us, asking questions, doing an in-office exam, taking notes, etc. He wanted to try to record a seizure, so we scheduled an EEG for this afternoon. After getting 30 electrodes glued to my scalp (for a second time - oh, what a joy) the fun really began. Using a flashing light and dropping large books on the floor while I had my eyes closed, the techs were able to induce multiple "twitchy" episodes. The doctor came in and witnessed the worst of these, which I thought was good - he'd know exactly what I had been describing earlier.
After the EEG and getting "disconnected", the doctor came back into the room and explained to us what he had seen on the EEG. The great thing about EEG's is that results are instantaneous - no waiting around for anything to be developed or anything. He had good news and bad news. Or maybe it was bad news and worse news. Or maybe the good news is great news in a sense, but bad in another sense. Can you tell I haven't really sorted it all out yet?
Here's the deal: While I was twitching, and having what we've been referring to as a seizure, my brain waves were perfectly normal. So I do not have epilepsy, which is good news. Anti-seizure medication will not stop my seizures or episodes or whatever the heck they are, which is both good and bad news. I did not/do not want to have epilepsy or be dependent on medication forever. I was hoping for some news that there was a magic pill that would make these things go away so I could get on with my life. The bad (or good?) news is that eventually these "episodes" should go away on their own. He had no idea when. He seems to think they go hand in hand with the Post Concussion Syndrome, which takes anywhere from six-nine months to resolve, but can take up to two years depending on the severity of the concussion.
So, for now I get to live with twitching every day for at least the next 17 weeks (that's only 119 days!), or it could be 29 weeks (which is only 203 days). So in no flippin' time at all I should be twitch free, if I'm lucky.
2 years ago


1 comments:
This totally sucks. I'm sorry you didn't get the clear answers you were hoping for. I guess it's good news that you don't have epilepsy and this may not be permanent. It's just a total beeeeeeeyatch that you have no control and no real expectation of when this will get better.
HUGS Girl--hang in there. Don't stay away from the thread too long. We'll miss you and we're lots of fun in our own strange distracting way!
Tracy
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