Epilepsy Talk

Ode to a Doctor’s Visit… | October 29, 2020

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’re 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

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  1. Yep. I hope you have read our book. It has several doctor visit stories in it.

    Liked by 1 person

    Comment by Flower Roberts — October 29, 2020 @ 10:30 AM

    • Flower, what book? Can you send me a link to it?


      Comment by Phylis Feiner Johnson — October 29, 2020 @ 10:33 AM

      • Liked by 2 people

        Comment by Flower Roberts — October 29, 2020 @ 12:06 PM

      • Flower, Thank you for sharing your collective stories & inspiring journey to overcome epilepsy.
        Every strong willed mother who raised a child with epilepsy to become adult enough to know the ropes & take over the struggle to control seizures deserves a Nobel Prize.
        As for the hospital industry & medical institutions providing attentive caring doctors to designate enough time to listen to the patients plight, unfortunately requires a lot of money many patients can NOT afford to pay.
        Therefore, as long as money remains the main driving force for the medical institutions to stay in business & provide substandard unprofessional services to society while the state establishments fail to protect society demanding accountability for substandard unprofessional conduct of dismissive doctors, the struggle to find credible medical professional doctors to listen, feel & help cure the patients medical hardships will continue to be part of the patients burden to fight the disease.
        Therefore, just like I learned from my young niece standing by my hospital bed interrogating the ER doctors & demanding for answers when I had my last fatal seizure, patients need to stand up for themselves & demand for more time & better services than the unprofessional doctors are willing to provide or face the risk of losing their medical license to keep carrying out their substandard unprofessional services in the state.
        After all, patients are struggling to survive fighting difficult medical hardships, therefore don’t have to put up with additional burden with dismissive & negligent doctors who have don’t have enough time to listen to the patients medical problems.

        Liked by 2 people

        Comment by Gerrie — October 30, 2020 @ 2:48 PM

    • Let me know that this worked. If not I will do it another way.

      Liked by 1 person

      Comment by Flower Roberts — October 29, 2020 @ 12:08 PM

  2. The links took me to the lead page, (for some reason???), but I was able to buy the book with the Amazon link.

    Thanks. Looking forward to it.

    Liked by 1 person

    Comment by Phylis Feiner Johnson — October 29, 2020 @ 12:21 PM

  3. I keep a Daily Journal EVERY Year. It is very tiring. I write down the times I take pills (not always the same time) and the doses. Even what I eat and drink. And so many other things. I will carry with me to my appointments, *assuming my neurologist would Be THRILLED in looking up this valuable information! I can’t remember where I’ve seen him as much as copy any of the information down. And not many questions. It seems the biggest topic is us asking him, “Are there any new medications?” There NEVER seems to be! One has been on an experiment. He was to have contacted me about that. My next appointment, he let me know it was no longer running.
    SERIOUS! It sure would be nice having a REAL doctor! Once I told him about having forgotten to bring a NEW bottle of *Tarragon to give to someone who does NOT have epilepsy, and how I learned it could *trigger more “blackouts.” I learned this from *you, Phyllis. He didn’t have much to say about it at all. And my husband is in the room also! Two men and nothing! But he got paid for the wasted visit!

    The Clock Is Ticking and I am getting older. I would love to go get in a car, start the engine and drive somewhere! But I *Obey The Law of The State of Virginia! In the mean time, when out and on the passenger side of car, I see people driving with just one hand on the wheel, using a cell phone. Some even drunk and driving. And *I am considered *Dangerous on the highway? Seems that my life is just as much at risk as a passenger. Tell that to the doctor who already drives to get at “work,” taking your money to give “advice”–until next time. Besides. It’s not them who is hoping to receive “The Magic Bullet.” As long as they have the patient coming back more times, they receive MORE Money. *My opinions.

    Liked by 1 person

    Comment by Effie Erhardt — October 29, 2020 @ 3:26 PM

  4. Effie,

    The helplessness and feelings of hopelessness are staggering.

    WHY WON”T THEY LISTEN? It’s not too difficult. (Or do we speak in tongues?)

    For most doctors, after 30 minutes, we’re just a case file.

    That’s why I put together this article:

    2020 Patient Recommendations for TOP Neurologists…Epileptologists…Neurosurgeons…and Pediatric Doctors


    Resources from people like US!

    Liked by 1 person

    Comment by Phylis Feiner Johnson — October 29, 2020 @ 3:55 PM

  5. Phylis, do you have any articles or posts about ambulatory EEG’s? I am getting one this weekend and was wondering if you personally posted any info.

    Liked by 1 person

    Comment by Hetty Eliot — October 29, 2020 @ 6:12 PM

  6. Video EEG Monitoring — allows prolonged simultaneous recording of the patient’s behavior and the EEG.

    Seeing EEG and video data at the same time, permits precise correlation between seizure activity in the brain and the patient’s behavior during seizures.

    Video-EEG can be vital in the diagnosis of epilepsy and epileptic seizures.

    It allows the doctor to determine:Whether events with unusual features are epileptic seizures, the type of epileptic seizure, and the region of the brain from which the seizures arise.

    Continuous Video EEG Monitoring – studies the brain waves over time.

    This can be accomplished through continuous Video EEG Monitoring, where a patient stays in a special unit for at least 24 hours.

    Antiepileptic medication is stopped for the duration of this test, since the objective is for seizures to occur so the abnormal brain waves they produce can be recorded.

    A video camera connected to the EEG provides constant monitoring, enabling the medical team to pinpoint the area where a seizure occurs and track the patient’s physiological response to the seizure.

    Continuous monitoring can also help distinguish between epilepsy and other conditions.

    It can characterize the seizure type for more precise medication adjustments and locate the originating area of seizures within the brain.

    AEEG (Ambulatory Electroencephalography) — is a relatively recent technology that allows a prolonged EEG recording in the home setting.

    Its ability to record continuously for up to 72 hours increases the recording of an ictal event or interictal discharges.

    An AEEG is a less expensive alternative to in-patient monitoring, with costs that are 51-65 percent lower than a 24 hour inpatient admission for Video-EEG monitoring.

    Let me know how you do. Good luck!

    Liked by 1 person

    Comment by Phylis Feiner Johnson — October 29, 2020 @ 6:45 PM

  7. When you 1st see any NEW neurologist, they all are very compassionate about your seizure life & struggles you have had living with seizures. Once 2 years have passed by and no differences are seen with your condition, it’s like as you say, YOUR A CASE NUMBER, & then in most cases RESTRICTIONS & RULES are put into your life for 6 months or longer. After they see, AND THEY KNOW they just added MORE STRESS in your life, they can not ever say that more stress means more seizures, to have more & more trials & struggles with possible more drugs, or other options of a HIGHER COST to lower or eliminate your seizures if possible. In all that time, they never consider to go to any area that you think can help your condition for a focus area or more than 1 area of the brain chemistry that you may believe is a problem, and if anything else creates a problem of side effects, they just say & tell you,, IT’S PART OF THE TREATMENT/S AND GOES WITH THE TERRITORY. I always ask myself, If ANY neurologist ever treated people with seizure conditions who are a FAMILY MEMBER, How would they get treated ? and if any neurologist who is living with seizures, How would they get treated to end their seizures, so NO LOSS OF A JOB effects their lifestyles ? I believe after 60 years there needs to be a neurology test to have a total brain chemistry VIDEO IMAGE like a WADA test ( without holding on to NOT using a bath room for 10 hours ) that will tell WHAT neurotransmitters are NOT performing or is low with whatever the brain is lacking & missing, & what areas of the brain NEEDS GABA, SEROTONIN, DOPAMINE & maybe less glutamate or and glucose. All EEG’s 7 MRI’s I ever have had always seems to tell the same results over & over & over every time 1 of them ever gets done. Their should be settings on those machines to monitor or show a more focused & a deeper brain activity in all sections of a human brain. Why does the country ISRAEL have better success results in neurology that the USA has over the past 40 years ?

    Liked by 1 person

    Comment by James D — January 10, 2021 @ 6:51 PM

  8. This things written made me so upset and so angry!
    I would love to be a public speaker defending everyone of us who suffer from seizures!!!

    Liked by 1 person

    Comment by Beatrice Poni — August 22, 2021 @ 7:19 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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