denial

[spinnymommy]

Since being diagnosed, (I really am not sure how long ago-I don't have a sense of time- part of my TBI) I think it was the summer before last maybe.

Anyway, since my diagnosis I have struggled with "maybe I don't really have epilepsy". It is kind of strange, because before I was diagnosed I thought I might be having some type of seizures but didn't tell the dr that because I "knew" I had to be wrong and didn't want to give him any ideas.

Shortly after my brain injury I had an MRI and an EEG that didn't show anything. I know that isn't conclusive, but in my case I hadn't yet had anything resembling a seizure at that time. They didn't show up until about 3 months after I got hurt.

I had no idea my simple partials were seizures until the dr told me and I researched it. Those are just weird. It was the "zoning out" that I felt might be seizures. My neuro told me that those were complex partials. I am so out of it during them that I don't really know what is happening but sort of do. Afterward I am so confused and can't talk well.

Ok, all I just wrote should convince me I have seizures. But now that the med has been raised to a point where I don't have them anymore, I have doubts and want to stop taking the medication.

I realize that all this is irrational, but it is nice to have people to talk to about it who might understand.

Kerin

 

[Bernard]

Hi Kerin,

Stacy still gets in a frame of mind where she likes to tell me that she didn't have a seizure when have I witnessed one and told her about it after the postictal period passes. If you are not conscious of them, it's hard to accept that they are happening.

Sounds like you have full control of the seizures with your meds. If so, most docs wouldn't consider titrating off the meds for at least 2 years (pending clean tests showing no epileptiform activity of course).