Appointment with Epileptologist Questions?

[emily.tyrant]

So my seizures started in the beginning of March. I saw a neurologist who determined it was temporal lobe epilepsy, but I recently had some "breakthrough" seizures after a medication change. So my neurologist has referred me to an epileptologist.

Have any of you been to an epileptologist? How is the evaluation/exam different than that of a neurologist? What kinds of questions do they ask?

 

[Nakamova]

The evaluation/exam won't be particularly different. The main difference is that -- ideally -- the epileptologist should be able to go into greater depth about your treatment options. He/she should be able to answer questions about how best to respond to your breakthrough seizures -- for instance, does it mean the dosage needs to change, or the meds, or both? What are all the medication options, side effects, etc. They may also know whether any more testing or any other kind of treatment is relevant or useful.

 

[masterjen]

Ask anything your neurologist could not answer!
And, make sure you have the opportunity to provide information about your seizures and other symptoms from scratch, and not rely on what information the neurologist chose to give to the seizure specialist. I think it is important that the specialist hears the information first hand and not information that is "screened", slanted or otherwise biased by your neurologist. Not that I am saying your neurologist is "bad"; just that whenever we provide info. 2nd hand in any situation, it is always already somewhat interpreted by us with our opinions, and may not have all the relevant information. It's always important to go to the source, and in this case the source is you!