If you’re like me, when it comes to your illness–in this case Epilepsy, if it’s time to try something new, whether it’s an anti-seizure medication, a test, a new doctor, treatment center or alternative therapy, the research floodgates are opened. My computer becomes my best friend. No sooner had Dr. Shah suggested Vimpat to me a few months ago…I was online checking chat rooms, neurology research websites, hospital sites…anything that would give me nuggests of information about this relatively new drug. I also bombarded him with questions about the drug. How many patients had he prescribed the drug to in its relatively short time on the market? How had they responded?

After I information-gathered, I made my decision. It was time for me to try this new anti-seizure medication. And let me tell you, I read some very negative ‘stuff’ about the drug. Those of us in the Epilepsy community are extremely opinionated! And, some people certainly don’t mince words when they are writing about medications or experiences with doctors or treatments! If there’s one thing I’ve learned during my illness, when it comes to your information-gathering, you must take everything you read in these chat rooms and sites (including this one!) as opinion, because that is precisely what it is. Each of us with Epilepsy is very different. All of our seziures vary. My reaction to Vimpat is going to be different than the next person’s. My experience at Johns Hopkins Hospital, 2003 – 2007 was fantastic. Someone else may never want to walk through those doors again. It’s all opinion and it’s all very subjective.

So how do we cut through the opinions and make sure we make the right decision? Take choosing a doctor, for example. If you are switching neurologists, make sure you interview that doctor you have your eye on. Go into your appointment with a list of questions–on paper. How many patients does he see with Epilepsy? What does he expect you to tell him at each appointmen? How often does he expect to see you? Does he expect you to keep a log of your seizures? What services can you expect from him? If you are not seizure-free at the moment…are you going to pursue treatment choices other than medication? These are just A FEW of the points that should be made when you visit with a new doctor.

You are in charge of your care when it comes to your Epilepsy. As I so often say, and we must all remember, we are each so different when it comes to our Epilepsy. Opinions are just that…so take them as such.