Epilepsy Talk

Secrets to Better Care from Your Doctor… | August 15, 2018

When you go to see a doctor, often the visit seems to be over in a flash and you leave wondering exactly what it was the doctor wanted you to do.

Doctors are often quite busy and may not present you with all the necessary information so it is your responsibility to take steps to get the most out of your visit.


If regular visits with your neurologist seem short, and taken up with medical details like seizure control and medication issues, ask in advance for a longer time to be scheduled to deal with other issues that are important to you.

Be prepared

Make sure you keep a daily seizure diary. 

Each time a seizure occurs, write down the time, the type of seizure it was and how long it lasted.

Write down any major stresses or recent life changes that could trigger seizure activity.

All of this can help your doc can get a better idea of what’s going on with you.

Also, seek input from people who may observe your seizures — including family, friends and co-workers — so that you can record information you may not know.

Bring along a family member or friend to help describe your seizures or to take notes during visits to your doctor.

They can offer support and a second pair of ears.

Sometimes it can be difficult to soak up all the information provided during your appointment.

Plus, they may remember something that you missed or forgot.

And a second set of ears along with someone else there taking notes, can be both comforting and invaluable after your visit.

Let your doc know how you’re responding to your current medications.

Be sure to share your concerns about any side effects, drug reactions, behavior changes, physical changes, trouble sleeping, loss of memory, or even brain fog.

Accurate reporting will help you and your doctor make decisions together about a treatment plan that works for you.

There are zillions of anti-seizure meds out there and if you don’t tolerate one, you and your doctor can try another to see if it works better.

Come armed with questions

Preparing a list of questions in advance will help you make the most of your time with your doctor.

List your questions from most important, to least important in case time runs out.

During your appointment, you may feel overwhelmed by the information or the doctor may be using medical mumbo jumbo terminology you don’t understand.

He may even be going too fast.

If this happens, you need to let the doctor know so that he can slow down, rephrase or even write notes or draw diagrams for you if necessary.

Be persistent in asking your questions until you fully understand the explanation.

If you don’t understand a diagnosis or treatment, ask more questions — take more notes.

Make sure you understand the script and whether name brand or generic will make a difference to your condition.

And make sure you know exactly what the doctor wants you to do before you leave the office.

Ask about follow-up and get a contact number so if you happen to think of more questions, or forgot something the doctor told you, you can call the office immediately and request the information.

And, of course, if you have an emergency.

If the doctor gives you the bum’s rush, or doesn’t respond to your questions, don’t hesitate to look for a second or third opinion.

After all, this is your health we’re talking about.

And what you need is a doctor who will work with you and care.

Let your doctor know what is important to you and what concerns you have.

Discuss your expectations — don’t be timid.

Decisions about how to treat your seizures should include your opinions and goals for the future.

And when you leave, look your doctor straight in the eye and shake his hand as you say good-bye.

Because together, you are both partners in the business of your health.

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  1. Neurologists moved away from where I live. No driving, and had my records sent to my regular Dr.

    I made mention to her about some of the reactions of the medications. Told her how I had reduced one, and was better, and she so much as told me I’d better not cut anymore. So- if I’m having to take med for RLS and she won’t let me cut down anymore, do I have to put up with the RLS for the rest of my life?


    Comment by Karen — August 16, 2018 @ 1:02 AM

  2. Thanks for the great information.
    Love you! You have used your difficulties to help others.

    Liked by 1 person

    Comment by Nancy — August 16, 2018 @ 9:36 AM

  3. Been doin’ practically all of these recommendations, Phylis, but some of the FORMER neurologists that I tried were kind of WEIRD. Out of all of them, only one along with my present Epilepsy Specialist read my notebook. One, would only call once a month and just talk with my Mom, while I would only see him 2 times a year.
    Two pretty much gave up on me. The first one, just walked into the room and before I, or my Mom could say anything, he said “Well, I guess that’s the best we can do. You’re just going to have to live with it.” Of course that was the last time I went to him.
    The other would never let my Mom come back with me to his office. Once he wanted me to make A MASSIVE CHANGE OVER in my medications, while I would be taking care of my Mom, who would be recovering from knee surgery! I said “I think we’d better wait until the next appointment.” But he was persistent. I finally just looked at him, eye to eye, and said “NO, I WILL NOT.” and left, and saw another neurologist.
    Going to a new neurologist is almost like giving a new car a test run. To see if it’s comfortable. But I Have Finally Found The Right Epilepsy Specialist For Me. The only thing is that her office staff makes it impossible to get in touch with her. But I just keep calling.

    Liked by 1 person

    Comment by David Jensen — October 31, 2018 @ 11:52 AM

    • Seems like you’ve been through the mill, David.

      But I’m glad you’ve found your (wonderful?) new Epilepsy Specialist now.

      If you can’t get ahold of her, why don’t you ask for her email address?

      That way you can past the “gatekeepers” in the front office.

      P.S. I love your test drive analogy.


      Comment by Phylis Feiner Johnson — October 31, 2018 @ 12:06 PM

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    About the author

    Phylis Feiner Johnson

    Phylis Feiner Johnson

    I've been a professional copywriter for over 35 years. I also had epilepsy for decades. My mission is advocacy; to increase education, awareness and funding for epilepsy research. Together, we can make a huge difference. If not changing the world, at least helping each other, with wisdom, compassion and sharing.

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