Epilepsy Talk

Secrets to Better Care from Your Doctor | June 13, 2010

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 physician 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. If necessary, ask for a separate appointment to discuss your questions and concerns. Often the nurse who works with your doctor will have additional time to talk with you, at the time of your appointment or by phone.

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.

And 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 many good 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 and the doctor’s answers 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 if the doctor gives you the bum’s rush, or doesn’t respond to your questions, don’t hesitate to ask for a second opinion or else find another doctor who will work with you and care.

Forge a relationship

Good medical care is based on a partnership between the doctor and the patient. Therefore, it’s important to communicate your concerns clearly. 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. I like the suggestion to ask for more time.

    My husband asked to get a second opinion. We are going to a good group.

    My close Neurologist gets concerned and told not to change but I am on my husband side to get a second opinion.

    I will stay with the people I see, I will see hear what the others say. I have problems understanding at times and falling asleep. That is medication of seizures.


    Comment by Tonialpha — June 14, 2010 @ 1:20 AM

  2. I think a second opinion is always a good idea. If you have problems understanding what the doc says, either bring someone else with you or ask questions until you do understand. That is the doc’s job. To help control your seizures and explain how!


    Comment by Phylis Feiner Johnson — June 14, 2010 @ 1:35 AM

  3. I wish I could get a professional like you! I know a few of us would love to have your help!


    Comment by Tonialpha — June 14, 2010 @ 5:00 AM

    • I’m not so smart, I just do a lot of research. That comes from my last life as a health & wellness writer. You can’t just make the stuff up out of whole cloth. Plus, everything has to be fully documented for the FDA. So, you see, it was good practice for me. 😉


      Comment by Phylis Feiner Johnson — June 14, 2010 @ 11:44 PM

  4. These are great ideas for me, since I am going to have a colonoscopy.

    The first doctor I went to, I cancelled the appointment. Now that I look back on it, I really did not feel comfortable with him.

    The second doctor I have now, I am going to stay with. He even called me tonight. I know I can call on him when I need to before the procedure. I am going to write down some questions for him and then call him back. The first time I saw him, he was very honest and sincere in his answers. That is very important to me.


    Comment by Ruth Brown — June 14, 2010 @ 6:17 PM

    • Good for you! I’m glad you went with your gut feelings. (Pardon the pun!) I just wrote a little research about anesthesia in the epilepsy auras article.

      There’s a link on epilepsy.com about premedication for epilepsy patient procedures…

      “During the preoperative interview, the anesthesiologist determines and prescribes premedication for the patient. The choice of premedication can have major implications for the patient with epilepsy.

      Administering the patient’s daily medications orally with a sip of water or via an alternate route (intravenously, intramuscularly, or rectally) can avoid decreasing serum levels into the subtherapeutic range. Not only AEDs but also antihypertensives and cardiac, diabetic, and asthma medications should be given in this way.”



      Comment by Phylis Feiner Johnson — June 14, 2010 @ 10:23 PM

  5. I am glad I got a second opinion. I have been w/ the Epileptologist a year now. My husband thought I should go back to the original doctor. She listens, she has residents that listens, she has nurses that listen. The other Epileptologist was excellent too, it was a different style. Both were excellent.

    After 2 minor emergencies she addressed the situation and is having me go to her facility to correct the minor problem of swallowing. It is intermittent. The meds, are working the best and we both do not want to change them so she is checking if it is anything else wrong w/ my system causing swallowing and stomach problems.

    My GI doctor was not anxious do to seizures, but my Epileptologist was ready to check things out with the GI docs at the University. Losing weight is ok, but nausea is no fun.


    Comment by Toni Robison — October 22, 2011 @ 12:01 AM

  6. Yay! So you’re on your way. So glad to hear that. And even that she’ll try to take care of the swallowing.

    (The GI guy probably thought you’d gag or seize on him!)


    Comment by Phylis Feiner Johnson — October 22, 2011 @ 1:23 PM

  7. I sufferd a tramadic head injury when I was 14, it’s was to the point I had only 8% chance of living. I was in a coma for about 3 weeks after the accident I kept having these times when I’d be home alone and I get this sent then all the sudden this feeling of fear, anxiety would just overwhelm me it would last like one to five minutes. After Id get them so much Id just have such bad anxiety I be been off and on seizure medication for ever I’m now 32 ive had 2. Grandmal seizures since then now I’m back seeing a nerouligist and I feel more back on track but I still get anxiety not as badd has any one ever felt this way?


    Comment by Alisha — July 24, 2012 @ 1:07 AM

  8. Anxiety can be caused simply by the fear of having a seizure, medication side-effects (always a wild card)…and of course, the epilepsy factor itself.

    But you’re hardly alone. Up to 50 or 60% of patients with chronic epilepsy have various mood disorders including depression and anxiety. But less is known about anxiety disorders.

    There’s medication. A newer medication to treat anxiety, Buspirone (Buspar), is safe for almost all patients with epilepsy and anxiety. SSRIs can be helpful. Benzodiazepines are very effective in the short-term treatment of anxiety and insomnia, but they’re among the most addictive drugs legally available.

    They include:
    Clobazam (Frisium), not available in the US
    Clonazepam (Klonopin)
    Diazepam (Valium)
    Alprazolam (Xanax)
    Chlordiazepoxide (Librium)
    CEorazepate (Tranxene)
    estazolam (Prosom)
    Lorazepam (Ativan)
    Triazolam (Halcion)

    There’s therapy or counseling, which I find very helpful.

    And also some self-help techniques such as:

    Learning a variety of relaxation techniques.
    Practicing deep abdominal breathing.
    Replacing negative self talk with coping self talk.

    Listening to music like New Age, Romantic, or Jazz.
    Walking can help relax you and let out anxiety.
    And visualization can take you out of yourself to a place of calm and comfort.

    I hope these help a little…


    Comment by Phylis Feiner Johnson — July 24, 2012 @ 10:02 AM

  9. I found out what was causing the nausea and diarrhea. It was not the medication. The Epileptologist that I am seeing referred me to a Gastrointerologist (sp). The echo saw nothing but the NM Hepatobilary w/ gallbladder included pharm(CCK-HIDA) indicated that my gall bladder needed to be taking out.
    Explaining my burping and nausea plus diarrhea.

    I thought it was medication. The Epileptologist listened and the Gastroenterologist listened,

    I will be having surgery soon. The Epileptologist increased medication because my seizures have increased and the GI doctor has given me medication for acid reflux and nausea.

    I take Keppra XR, Zonegran, Klonopin, Dexilant, Ativan when I start having a group of seizures , Zofran, and Phenegran


    Comment by Toni Robison — July 24, 2012 @ 10:52 AM

  10. Oh Toni, so sorry to hear about your distress — even though it’s been going on for a while. And thrilled that there’s a resolution…especially in these days of Laproscoptic surgery. (Now you don’t have to be slit from hip to hip!)

    What are they going to do about your meds before anesthesia and surgery? And then will they titrate you back up to speed? It sure does sound like you’re on a lot of them.


    Comment by Phylis Feiner Johnson — July 24, 2012 @ 3:22 PM

    • The Zofran and Phenegran and Ativan are as needed.

      The Epiletptologist is going try me on meds. I have been nauseated on before. Which is great! Tegretol XR for example.

      Have had any of this crazy rain?


      Comment by Toni Robison — July 24, 2012 @ 5:29 PM

  11. Mmmmm. Haven’t you been there…done that?

    Rain comes in monsoons…then goes away till another day. Meanwhile, it’s so humid, you can hardly breathe.


    Comment by Phylis Feiner Johnson — July 24, 2012 @ 7:32 PM

    • My asthma hit me today walking the dog ….Couldn’t go to far before getting dizzy and then a partial sz hit. The weather is no fun at times. A little to hot and humid!


      Comment by Toni Robison — July 24, 2012 @ 8:11 PM

  12. I got heat exhaustion and fell over like a stone.

    Atmospheric conditions, changes in air pressure or any sudden action, (like arising from a prone position too quickly), can act as an instant stressor.

    And also, believe it or not, barometric pressure
    weather differences such as sudden changes in temperature, dark skies, thunder, or bright, hot sunlight and humidity may be a definite trigger for some. (Like us!)


    Comment by Phylis Feiner Johnson — July 25, 2012 @ 9:48 AM

  13. stupid question, should i put when the suspected seizure disorder, epilepsy, started? ty.


    Comment by Crystal Cahill — April 3, 2014 @ 6:57 PM

    • Keep track of your sleep pattterns, what you eat and when, your daily activitities, emotions (good or bad), timing of seizures and, if possible, the duration.

      I know, easier said than done!


      Comment by Phylis Feiner Johnson — April 3, 2014 @ 7:07 PM

  14. and thanks for the advice<3


    Comment by Crystal Cahill — April 3, 2014 @ 8:40 PM

    • i took my mom to the appointment with me, but yes i do eat healthy, yes he ask me that. and on occasion have fast food but i am trying to cut back the fast foods. he also asked about my last physical, and if my blood tests came back normal, yes they did, but also he knows about the problem with my menstrual cycle because i told him and told that my primary care doctor had started me on OPCs. he understands because he is an endocrinologist.


      Comment by Crystal Cahill — May 14, 2014 @ 11:38 PM

  15. Naughty you for eating junk food. I know it’s addictive, but promise me you’ll try to give it up. (I’m allergic to all meat, so there’s not much temptation, except I LOVE fried onion rings and fries.)

    Great that you went to an endocrinologist. That was brilliant in light of your catamenial epilepsy. Who steered you there, your Primary Care Doc or Neuro?

    Good to hear you’re making progress. And thank your mom for me.


    Comment by Phylis Feiner Johnson — May 15, 2014 @ 9:35 AM

  16. Very well said


    Comment by G. Ney MD — December 27, 2015 @ 9:47 PM

  17. Coming from a doctor, that’s quite a compliment. Thank you.


    Comment by Phylis Feiner Johnson — December 28, 2015 @ 9:38 AM

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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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