How to talk to neurologists (and get answers)
I run a support group for people with epilepsy, and one of the common themes that I hear is that when someone is newly diagnosed with epilepsy or their seizures change, their neurologist doesn’t take the time to answer their questions. Family and friends have started ‘referring’ people to me that they know with epilepsy - mostly those who are newly diagnosed or who have a child just diagnosed with epilepsy - who want answers they aren’t getting from their doctors. It can be scary hearing “You have epilepsy” for the first time. I’m not a doctor, but I’ve been in the epilepsy system long enough to know the language and to know what questions to ask. Here are some tips on how to get your doctor to listen to you and give you the information that you need.
1. You can - and need to - advocate for yourself. Something I hear often is that people are intimidated by their neurologists. They find their doctor dismissive, and don’t know if they can ask questions. I get it. I used to think that neurologists had all the answers, I should just listen to them, take the meds I was given, and not ask questions. Here’s the thing: neurologists don’t have all the answers, but you deserve to have yours answered. They are not better than you are. You are just as important in this world as the doctor you are seeing to take care of your brain, and you need to be your own advocate. Ask all the questions you have. Take someone with you to the appointment. Bring a list of questions, and make sure that every single one is answered before the doctor leaves the room. You can also tell your doctor how you are feeling about your experience with him/her/them. “I don’t feel like you are listening to me” is completely appropriate to say if that is the case.
2. Ask all your questions. As I said above, bring a list of questions that you want answered. In the moment, you may be nervous, scared, sad, and forget to ask something. Prepare for your appointment, and don’t expect that the doctor will be. Honestly. I know that it’s strange to say, but I have heard from many people that their neurologist came into the examination room without having looked at their chart or reviewing their tests. Be prepared for that, and bring your list of questions. I have included a list below of questions that are pretty common, and your doctor should be able to answer.
3. Remember that there is more than one neurologist in the world. You don’t have to stay with the first neurologist you see if you don’t have a good experience with that person. You will be a team working to manage your seizures, and you should feel respected by your teammate. If you don’t feel comfortable with your first neurologist or you don’t think that he/she/they are listening to you, have your PCP find someone else for you.
Being thrown into the epilepsy world can be scary, and the world of neurology does have its own language. Your neurologist needs to take the time to explain this language to you in a way that you understand, so take these tips from someone with decades of experience and you will feel a bit more confident walking into your appointment.
Common questions
1. What are the results of my MRI/EEG/other imaging or tests?
2. Why are you recommending this medication? Why this dose?
3. What are common side effects of this medication? How long do they last?
4. Will we need to check my levels? (This means draw blood and have the doctor see what ‘level’ of medication is in your system - is it enough? Too much?) How often? How do I schedule that? Do I need to do it at a certain time?
5. What type of seizures do you think I’m having? Why do you think that?
6. Why are you recommending this next test/imaging/etc.? What information will it provide that we need?
7. I’ve tried two medications (or more)/I have an abnormal MRI. Is my case one where we can look at surgical options? Why/why not?
8. What surgical options are available? (For those who have tried two or more medications or who have abnormal MRIs/other imaging.)
9. What testing would we need to do to determine if I am a candidate for surgery? Why do we need to do these tests?
For trying new medication or a new dose of medication:
1. How long do I need to give this medication to work?
2. When will I know if any side effects will go away?
3. How long should I wait to see if the side effects go away?
4. If the side effects are too much (i.e. debilitating headaches, blurred vision, extreme drowsiness), how can I contact you to let you know? What will you do about it?
