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Epileptologist
Thu, 02/15/2007 - 00:00Topic: 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!
Thanks for following up.
Submitted by Tish on Wed, 2007-03-07 - 09:31
Thanks for following up. When I saw my regular neurologist, she was very pleasant and I could tell they had had a discussion from the why she acted. She acted different at first. I explained what happened from my side of the situation and she was surprised. I got some excuses as to how overworked he is, maybe a bad day, and she even an apology for his rudeness. We discussed a few more things that the Epi raised in questions and I couldn't answer, and I felt better about agreeeing to the in-house monitoring. He says he'll get me answers. I'll go positive and pray that something is caught. I told her that I felt that I have to prove to this man that I have issues and she assured me that that isn't an issue. I've too many abnormals and nocturnal seizure was caught on an ambulatory EEG. Besides she's watched my improvement under her care. Again she smiled and shook her head saying he really is such a nice man. I must have just hit him at a really low spot in his day. He's new and the other Epi is taking a bit of a break. She's tired from having been the only one. My neuro says she's been referring allot of patients and she's only one. She says it probally isn't a bad idea to go through with it anyway. She promises to be there with me throughout the stay and be part of the study start to finish visiting me often. She says they have revamped the VEEG from my last one where I only saw a resident once a day and the Epi at the end for a brief run-down. Now they are ever present and talk to you frequently with updates and the Epi's ofc nurse is on site also. He only has clinic one day a week. I can also bring my laptop as the hospital has gone wireless. I feel better about this stay. And after reading others' experiences I will do some extra sleep depreviation over the days prior and since he went to the past we have been going there also and jogging our memories. Hopefully I will be prepared for most questions and will be able to give an intelligent answer this time. My test is scheduled for this Monday,the 12th. Now if my newest grandchild will either come early or wait until after I will appreciate it. My son and daughter-in-law are awaiting any time now to welcome a child into our family. She's due March 17th but has begun to dialate which doesn't really mean too much. The kids say go for it, Mom. We'll need you after. I'm so torn with this decision also. I know how much time I spent with my daughter 12 months ago when she had her son. If I don't have this VEEG now I can't see scheduling it for about two months. So, we made a family decision to get it out of the way now and have the meds adjusted accordingly. That's why I went to see the Epi in the first place. A simple little med adjustment.