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Epileptologist

Thu, 02/15/2007 - 00:00

Topic: New to Epilepsy.com

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 Tish on Wed, 2007-02-21 - 10:30

Had my appointment and he mainly wanted to talk about the past. Not much about the present which confuses me. Wants to do a VEEG with me stopping meds the night before. My neuro has stated that she doesn't have much faith in these unless meds are stopped for a full 3 days before although it can be risky. Says it takes that long to get meds out of your system. I've 5 abnormal EEG's now all showing epilepical what you call its. They even caught nocturnal seizure on a 24hr ambulatory which he is says without video can be nothing. I'm disgusted. I'm confused. Suggestions and advise, please.

Re: Re: Epileptologist

Submitted by Anonymous on Wed, 2007-02-21 - 15:45

Don't get frustrated! While you may have wanted to talk about future, the epileptologist can't give recommendattions unless they revisit the past, hear what helped and what didn't. When meds don't work, then the specialist will want to know what else may be possible, such as surgery, vns implant, or investigational trials. These aren't for everyone and the specialsts can't tell if you would be a candidate unless they know more about your situation. Having up to date info from EEG telemetry can tell where seizures are coming from and if from an area that may be helped by surgery or a kind that may respond to other treatments.

Hang in there and see what info you get from the testing.

Good luck!

Epi_help

Hang in there and see what info you get from the testing.

Good luck!

Epi_help

Re: Re: Re: Epileptologist

Submitted by Tish on Wed, 2007-02-21 - 16:53

I wanted him to listen to today. I've had a VEEG just two years ago. They wouldn't allow me to bring in a laptop computer which was my biggest complaint nor to sleep. Kept me up 48 hrs and sent me home a day early. That epileptologist kept playing with keeping or releasing but the hospital suddenly needed the bed due to traumas so out I went. This time I bring in my laptop with DVDs and I demand internet hook-up. My job keeps me on line. Different doctor -- different readings?? Why would he say that 5 abnormal EEG's showing epilepiform spikes and a 24 hr ambulatory catching actual nocturnal seizure activity doesn't really means much? All since 2003 with the last just this past November. What do you mean by a kind that responds to other treatments. By the way I'm turning 57 on 3/2 and had a partial hysterectomy 11/02. This nightmare started fall of 03. My gyne and female neuro says the anesthesia could have done something or made what was always there worse.

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