My Neurologist Appointment

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AngelwithDentedHalo

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I just got back from my appointment not long ago and it went well. First thing he always asks me is if I had any seizures but this time he added, asking me if I had any seizures or episodes. I told him no. He asked me how I was feeling and I said fine.

He said the EEG was completely normal. He's convinced that the seizure is due to the bleed and that I was actually bleeding in the brain when I had the seizure and that's the source of the seizure. I told him about the head trauma's I've had over the years and gave him a list. First thing he said was "WOW, that's quite a list."

He said though that he doesn't think it's related cause the blood in my brain had been recent as far as it being present on the MRI and that it was anywhere from 1 to 6 months old. He says although we don't know the reason for the bleed, that's probably why I had the seizure.

He said since it's been two years since the seizure, we could think about taking me off the meds BUT with my history and the bleed and now the head trauma's I showed him, he's a bit apprehensive about taking me off the meds. He asked if I was worried about having one and if I wanted to go off the meds. I told him I do think about it a lot and he said it absolutely won't hurt to keep me on them.

He said that he liked to keep patents on meds for as long as 5 years, minimum of 2 so he said let's keep doing what we're doing and I go back in six months and keep taking the meds. He didn't want to order another EEG, didnt think I needed one.

He said he's apprehensive about taking me off meds because the risk is always there once you've had one and being I've been so sick and the bleed, it would be a good idea to stay on them for now. I do have brain atrophy, which is shrinkage of the brain I think but he wasn't worried about that.

I told him and showed him the tremors and said I thought it was from the meds. He said it shouldn't do that but it could be. He didn't seem too worried about that either. So although it's good that the EEG was normal & he seems to think the seizure is from the bleed, I don't know what caused the bleed or if that's it for sure and test still didn't give me definitive answers. I trust his word but he doesn't really know for sure either.

I told him about the episode a few years ago and he said it could have just been the lighting or maybe the fact that I had been sick at the time and I probably got a little faint. He didn't seem to think it was a seizure. So I have some answers but at the same time, still have no answers, no absolutely sure one's anyway.
 
It's tough when there's no definitive answer the neurologist can offer, but at least he was honest about it. If you do decide to taper off medication in the future, you can have an EEG done at various stages during the taper to see if abnormal brainwaves occur as the meds drop to sub-therapeutic levels. My neurologist has suggested I go this route if I decide to taper.
 
I had so much going on at the time it happened, it was impossible to tell what was what. I was 2 days out of the hospital for total kidney failure (Second time), I had a potassium level of 9.4, which should have killed me, I had been dehydrated and of course after that, the seizure and the brain bleed.

I don't believe in going half assed, I pull out all the stops when I get sick. lol. Seriously though, it is hard not knowing for sure what happened but at least my Neurologist is thorough and takes precautions with me and knows what I need.
 
I forgot to mention the jerks I experience once in awhile, during the day even. At night is normal for most but during the day for no reason?
 
You're right about when you get sick. Go big or go home, right?! I am glad that your eeg came back normal, but also am glad that you are going to continue on the meds for now.
 
Thaks huskymom, I figure they might as well get their money's worth lol. Seriously, I'm glad the EEG is normal & though my Neurologist is sure it was the bleed that caused the seizure, we still don't know how the bleed started. And if I have brain atrophy, seizures can result from that so probably good to stay on the meds.
 
That is good the EEG is normal and if you feel being on the meds is the best i'd do it. Glad that your neurologist looks out for you.
 
As long as the meds aren't causing side effects that interfere with your quality of life, and you're ok with staying on them, that's probably the best course for now. Especially since you're having those little jerks, which might be some sort of myoclonic mini-seizure.

When you mentioned the tremors, it reminded me that when our Jon was on Trileptal and also Depakote, he had significant hand tremors. Those went away when he was weaned off those meds. Right now, he's having fairly frequent seizures, but no tremors, so it seems the meds were causing them, not the seizures themselves. A bit problematic, because he was starting kindergarten, and his teacher was insisting he do the handwriting, and he couldn't even keep a pencil in his hand, it was shaking so much. He kept dropping the pencil, and then having to crawl under the table to get it.
 
Sometimes my hands shake so bad I can't type well and other day when I had to sign my name, my hand jerked while I was signining, that never happened before.
 
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