Epilepsy Talk

Ode to a Doctor’s Visit… | January 5, 2017

They forget that we live 365 days or 8,760 hours a year with our illness…

We see them for four 30 minute visits or 2 hours in that year while we struggling…

We spend time planning in anticipation of this precious, important moment…

We invest hope and sometimes fear into the event…

We have often orchestrated endless tests and other Doctors’ assessments in order that instruments will be tuned to perfection…that they might render us an orchestral visit…

The Doctor will listen to us as we have observed our condition relentlessly and respond with the respect due, to the information we offer and know what is needed…

That is what we ask.

By Sally Komar


  1. It has been our experience that M.D.’s hardly ever read all the documentation that patients (or parent/guardians) provide. Instead they have their nurse practitioner meet with you first, and she writes down what you tell her of the patient’s history (which is in the documents you provided anyway).

    To do the job right, a doctor has to really get to know a patient. In today’s fast world, that rarely happens.


    Comment by Martha — January 5, 2017 @ 5:11 PM

  2. No Martha. It seems time is more precious than we are. 😦


    Comment by Phylis Feiner Johnson — January 5, 2017 @ 5:19 PM

  3. If you live where I live and end up in a hospital. You never get to see you regular doctors unless you have had surgery, then you see the surgeon otherwise you will only see what is known as a hospitalists. They know nothing about you and don’t talk to you. Nor can they read each other’s writing on your chart. My husband now has to call my regular doctor who does care just to tell him I am in the hospital. They won’t even let him know what’s going on except once when I was in an induced coma because I was left to seize for 18 hours in the ICU. My husband kept telling them somethimng was wrong but they almost threw him out.


    Comment by Deb — January 5, 2017 @ 5:26 PM

  4. Phylis, you are right on something you said before. Most nurses in doctors offices take info and leave. My Internist has one who cares as much as he does.


    Comment by Deb — January 5, 2017 @ 5:29 PM

    • Sometimes when I’ve been in the hospital, I’ve hit it lucky and my doc was there on his “rounds”.

      The night I went into “status” it was a Resident who saved my life and the next day, my neuro showed to clean up the mess and take credit!

      You never know who or what you’re going to end up with. (Sigh.)


      Comment by Phylis Feiner Johnson — January 5, 2017 @ 6:46 PM

  5. Some of us don’t even go to the doctor that often because we can get by with 1-2 visits a year and when we have to change doctors because the one we were seeing no longer takes our insurance the ones we are sent to wants to put us through the same tests that they run years ago to try and explain why we have seizures in the first place when the question has already been answered. The truth is that they are just curious what makes you tick!


    Comment by Jeanine Bunt — January 5, 2017 @ 5:47 PM

  6. Curious maybe. Self-seeking, maybe more.

    My doc told me something once that has stayed with me forever.

    “Hospitals aren’t there to make patients well, they’re there for procedures.”

    Procedures = $$$ for all involved.


    Comment by Phylis Feiner Johnson — January 5, 2017 @ 6:50 PM

  7. 3 of my last 4 neurologists I have had in the past 5 years, all 3 wanted to HEAR MY WORDS of what I live with dealing with seizures, & HOW I believe creates them, and WHAT I have done that has and had NOT worked to stop them. 2 of those 4 dismissed me from their client list saying to me that they cannot figure out what else to do, knowing that drugs will not help me, and I have done all other things over the past 50 years to stop the seizures & nothing works for me. My neurologists now is that 3rd doctor who listened as the other 2, and he has not given up on me yet, but if together WE can not stop the seizures, I look to be eliminated from his client list too, before 2018 gets here. Then WHAT does a person with a hopeless life do to STOP seizures so you can START to live ? Seems like LIFE here is ALWAYS ON HOLD,, You know, that RED BUTTON that use to be on all business, doctors, & school office phones. It’s like these doctors HAVE THE ANSWERS, but they want you to HOLD ON FOREVER to test your brain in other ways that they do not tell you about, then they do not understand WHY you may get frustrated, as you know they THINK OF YOU AS A NUMBER, and not any real human.

    Liked by 2 people

    Comment by C D — January 5, 2017 @ 7:06 PM

    • Start, Stop, Hold, Wait. Test, Re-test. Responses anyone? Replies? Answers, sir?

      As you (more) eloquently put it CD — What are we supposed to do?

      Wait for our “fate”? I’m sorry doc. Ding, ding. That’s not the answer.


      Comment by Phylis Feiner Johnson — January 6, 2017 @ 9:32 AM

    • (To CD)

      Dear one, I am so sorry for all you go through! You have perseverance and strength to hold on, that is for sure. You are keeping on keeping on and that is inspiring. Praying for you, even though I don’t know you, that you will find the compassion and HELP you need!! You are not alone!


      Comment by Dixie Phillips — January 6, 2017 @ 9:38 AM

  8. Ddctor,s are there to help you not kill you, if some thing goes wrong they keep trying. It,s not like there saying that,s it I quit, unless that,s what you think If it is than why go to one,we wouldn,t be alive if did try.


    Comment by michele metzger — January 5, 2017 @ 9:16 PM

    • We go to doctors because we must and we put our trust and light and life in their hands.

      Sometimes that’s enough. Other times that doesn’t work.


      Comment by Phylis Feiner Johnson — January 6, 2017 @ 9:38 AM

  9. I’ve sometimes gone private and the difference between that and NHS!!! NHS, great, you’re still alive, here’s some new pills, see you next year, private, you walk into a room with carpet up to youyr ankles, squashy chairs, smiles, and hours of talk when you get every last second talked over!!


    Comment by Gail Barry — January 6, 2017 @ 2:47 AM

    • I guess this isn’t a vote for public medicine?

      What about the vast numbers of patients the NHS docs have to see?

      Are there enough docs to meet the demand?

      Will there ever be?


      Comment by Phylis Feiner Johnson — January 6, 2017 @ 9:37 AM

  10. Neurologist are the most arrogant doctors that I have ever known! My family keeps telling me to quit self diagnosing but I tell them doctors don’t know anymore than they did 20 years ago. I found the Epilepsy Institute and in the past went to a University these are the only place you will find compassion. I am 60 years old and seizures started manifesting themselves one year after retirement. The latest experiment is Lamictal and Vimpat. Seems ok so far although tired. Glad I found this site!


    Comment by lauraak2 — January 6, 2017 @ 8:33 AM

  11. Are you happy with your doctor / hospital now? How are the meds working out? (I know Lamictal works wonderfully for me.)

    As for self diagnosing — if no one is there, you have to start somewhere.


    Comment by Phylis Feiner Johnson — January 6, 2017 @ 9:43 AM

    • hi neurologist finally found 3 meds 4 me that works so far aptiom lamitcal also klonopin for anxiety usually cause seizures for me so far so good but you all are right about not seing neurologist I see mine once every 3 months and for bearly 5 minutes epileptic people c ant win for loosing and nurse preacticioner thanks to all of you


      Comment by jeannine lavigne — January 6, 2017 @ 3:10 PM

  12. Jeannine, it’s true, we seem to be spending more time with Nurse Practitioners than docs.

    And, without them, where would we be?

    Glad the meds are working for you…


    Comment by Phylis Feiner Johnson — January 6, 2017 @ 5:54 PM

  13. I am so grateful to see that others grasp this point of absurd ‘practice.’


    Comment by Judy Browne — January 8, 2017 @ 4:52 PM

  14. You’re right, Judy. That’s why they call it “practice”, not “science”!


    Comment by Phylis Feiner Johnson — January 8, 2017 @ 6:35 PM

  15. So true!


    Comment by The Silent E — January 9, 2017 @ 8:03 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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