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Epileptologist

Thu, 02/15/2007 - 00:00
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: Epileptologist

Submitted by ekoorb on Thu, 2007-02-15 - 10:44
Do not be afraid about going to an E specialist. A neurologist works with all different issues relating to the brain whereas a epileptologist focuses SOLELY on epilepsy. That means all day long they are looking at patients with E and they have a bigger knowledge base than a neurologist who does not specialize on just one topic. It does not mean the new doc is going to suggest something dramatic but maybe s/he will have better answers/solutions. Our 6 year old daugther has a childhood form of E and our epileptologist changed our lives. He is an amazing doc. Good luck with your appointment.

Re: Re: Epileptologist

Submitted by Tish on Thu, 2007-02-15 - 11:59
Thank you so much. I feel better. I researched too much and I know better. I've changed my lifestyle dramaticly and yet I'm being advised to do more. Just a few more days and maybe he'll help me get more of my life back again. This staying at home and being a queen isn't me!

I am glad you feel better.

Submitted by ekoorb on Sat, 2007-02-17 - 14:37
I am glad you feel better. When we took in our daughter, I had a log of dates recording everything that had happened. The chronology was very helpful but we were at the stage of diagnosis. Keeping a log from here on out might be helpful but if you don't have it for the appointment, you will be fine. Good Luck!

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