Epileptologist

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Hoping someone can give me some insight before my appointment this coming Tuesday. We've tried a number of meds so far and unfortunately I haven't done well with them in the past. Some have given me some nasty side effects including the Stevens-Johnson horror. I'm currently on Topamax 400mg daily and until recently was doing well. However, within the past few months my seizure activity has been increasing and my last EEG showed frontal lobe activity. My neuro is referring me out for help to get these seizures under control. When I was with her I didn't know what questions to ask. She said he specialized in epilepsy. I've done some research on this site now. Does an epileptologist only come into the picture when a neuro throws up their hands in frustration and yells "help"? Do they work with meds and by the time you get to one are you at the point where you may need to consider implants or surgery. Of course, each is case by case senario. I know this is long, and I'm not afraid. I'd feel better with some knowledge. I'm very comfortable with my neuro. I've "fired" two others and searched until I found her. She's wonderful for me. She would have answered all of my questions if I had known to ask them!

Comments

Re: Re: Epileptologist

Submitted by ekoorb on Wed, 2007-02-21 - 17:04

If you really think about it, focusing on the past is very important because it helps your doc figure out what has occurred up until the present and helps the doc make some decisions about the future. Don't be frustrated. Don't fight the process. There are a reason these specialists exist. S/he is only trying to take steps to help you. As to not taking the meds for one night and then having the VEEG, the E specialist did the same with my daugther and was able to get the info. he needed. S/he maybe looking for something specific that did not show up in the other EEGs or was not noted in the reports. Good luck.

Re: Re: Re: Epileptologist

Submitted by Tish on Wed, 2007-02-21 - 18:46

Thanks so much for your reply. I reread my statements and I sounded very demanding. I'm just so upset. At the time I was losing time while on the computer and when I would "come back" I would have had some bowel incontinence. They wouldn't allow me to have a test in as close to my life situation as possible. Right now I'm angry and frustrated with this whole process. I asked about him calling for another VEEG before going to this E-spec and my neuro doubted it very much. E-spec want proof positive it seems of seizures before their eyes. I was going off all meds two years ago on my own to start over to see what was actually me and what was meds and side-effects. I was convinced to see another neuro by my internist based on the EEG's and then she said I wasn't on a high enough dose. My head cleared until last fall and here I am. I'm just angry and frustrated. I want to know the peramiters this time round. I know I'm going to ask questions and ask to see the doctor and not just a resident. Besides all of the above, the E-spec spoke more to my husband at times. Asking him questions and his opinions of my and my actions. Unfortunatly, my husband chooses not to take an active role in this part of my life. Therefore I seldom tell him when I'm aware of something. My neuro asked the same questions a few weeks ago and he couldn't answer her. So yesterday he made up answers so he didn't look so bad. I should have had my daughter attend. She knows when my speech is off or I'm having a bad day even before I'm aware. She'll make multiple calls to the point I'm ready to scream only to be told a few days later that something was up and she was really just checking up on me. I think that's what's bugging me just as much. I'm just having a really bad emotional day. Tomorrow will be better. I've scheduled an appointment with my neuro for next Tuesday am and left a message for her to call. I know I'm making too much of this!! I'll do the test and it will be fine.

Re: Re: Re: Re: Epileptologist

Submitted by ekoorb on Mon, 2007-03-05 - 22:22

Just checking in to see how it went with your doc. Don't apologize for being frustrated. The beauty of this forum is you can vent here! I hope all is well.