Tomorrow Morning 5 day EEG

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But that's assuming that the person is seizure free on the meds to begin with. If the meds are not helping with seizure control, and if she is having fewer seizures when not on the meds, it seems that if nothing else, the meds need to be changed. Doesn't seem a lot of logic in taking meds that don't do anything except perhaps increase the rate of seizures.
 
I never even thought of the possibility the meds could increase the seizures. It does look like that though. She started back to classes this week and had a seizure yesterday, her fourth day back on the meds. The other possibility is that they are psychogenic non-epileptic, the doctor did not suggest that, but being back in school could be a source of stress.
 
Well, stress can trigger real seizures as well.

It sounds like she just may be in a "quiet" period -- she went 4 (?) days without seizures on no meds, then 4 days without seizures on meds, so that's just 2 seizures in a week.

Some of the seizure drugs have a long "half life" -- so the effects stay in the body for awhile -- for instance, Jon is on Diazapam (I HATE that drug), and I believe the half life is 200 hours -- that's what -- about 8 days that it stays in the system, and presumably gives some seizure protection. That might be why it took her until day 5 to have a seizure.

One thing I've started doing is keeping a chart of the number of seizures Jon has (right now we're doing a daily average) comparing that to whatever meds and dose of meds he's on. When Jon started on Diazapam and Zonegran, they did stop the tonic/clonics on a low dose, but they didn't stop the tonics -- in fact, the number of tonics stayed exactly the same. Even when he went to a higher dose, there was no effect (at least no positive effect; negative effects were refusing to eat or drink, manic episodes in the middle of the night, hallucinations, self-harming, etc.).

Then I take that chart to the docs (I do a weekly bar graph), and we discuss alternative approaches that might work better. Jon's pretty much worked his way through most of the meds, so not a lot of options in that regard, so now we're tweaking the Ketogenic diet, and adding in magnesium and fish oil, and actually all that has reduced his seizures from about 16 a week to about 7 a week. Still have a way to go.
 
After Anna's 5 day EEG in September, her "quiet" period continued for about a month. Doctor told her he'd have her do another video EEG if she had more seizures. The last half of October she had an increase in seizures again, all absence type. First half of November, quiet. Last half of November, 22 seizures.

She called her doctor before Thanksgiving to give him an update, the nurse said a doctor would call her. She hasn't heard from the doctor yet, and had 5 absence seizures at college today, so I think she will be giving the office another call tomorrow. Could very well be stress-related, she's having a difficult semester at college. If that's the case then I have a feeling she'll have another quiet period after next week's finals.
 
Is it pretty common for it to take forever to find answers? I have had one EEG and it was clear and the doctors I've seen pass them off as not epilepsy, but I am not always stressed or anxious when I have my seizures. 95% of the time they come out of nowhere and when I have had a normal day. Not stressed or anything. But, no one listens. I would like to get a VEEG done, but my doctor won't listen.
 
It does seem to take forever for a lot of people, unfortunately. How many doctors have you seen? I would try another doctor if yours doesn't listen to you, and you really want a VEEG. Are you having seizures frequently enough that you might catch one within a 5 day hospital stay?
 
I think so according to my fiance been having them just about every other night and also myoclonics and abcence seizures during the day. I have seen my family doctor and my neurologist and ER doctors if they count. Now I have to go see a psychiatrist and I am going to express my concerns to her. I am also gonna schedule another appointment with a different doctor.
 
I sent you a message :) Try to go to an epileptologist if you can find one. My daughter saw two different neurologists first, and then the epilepsy specialist, and I wish we had started right off with him.
 
i just replied. I hope I only sent one I couldn't remember if I did so i just sent one...sorry if you got two.
 
I concur that you should see an epileptologist if possible.

If I remember, didn't your boyfriend videotape one of your seizures? That would be good to take to the Neurologist or Epileptologist (even the psychiatrist).
 
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