Epilepsy Talk

Doctors behaving badly… | May 23, 2018

We all have had at least one experience when a doctor either behaved badly or treated us in a way we didn’t feel we deserved.

“He could have spoken in a nicer tone,” you might mumble to your mother.

But what do you do when the experience with a doctor takes a sharper turn?

What if he doesn’t believe your symptoms or validate your experience?

What if he doesn’t take into account your pain before beginning an in-office procedure?

The shock, fear, and disappointment of having a bad doctor experience can be daunting.

What can you do?

Should you do anything at all?

The answer to that, I believe, is always “yes.”

You may have heard the saying, “The customer is always right.”

You’re still a paying customer in the doctor’s office, and you know your body and your needs better than anyone else.

So, if you are unsatisfied with your experience, you should speak up!

Any patient in a hospital, when we take their clothes away and lay them in a bed, starts to lose identity.

Could this be you?

“When I was getting my first ever gyno exam at age 21, I winced at the pain of her inserting the speculum, and she scoffed and said, ‘Oh stop, it’s no bigger than your boyfriend.'” Nicole, 23, New York, NY

“When he was working on a filling, my (former) dentist said, ‘Oops.’ I think there are certain people who must remove words like ‘Oops’ from their vocabularies: surgeons, ob-gyns, bridge engineers. Dentists, who literally work inside your face, fall into that category.” — Marian, 26, San Diego, CA

“When I told my ob-gyn (who I had been going to for years) that was I thinking of becoming a single mother he said, ‘You will never date again, no man would want you.’ And he said that I should take the money I had saved and ‘buy a condo in South Carolina.’ I didn’t stay long enough in his office to ask, ‘Why South Carolina!?'” — Jo, 48, Brooklyn, NY

“Mid root canal, I heard the oral surgeon curse loudly enough for me to take my earbuds out, just in time to hear her say, ‘I can’t believe I just did that! Well, we can fix it, I guess.” — Melissa, 25, San Francisco, CA

“I have deformed, arthritic hips and went to a very famous holistically-oriented doctor to see if there was anything I could do instead of surgery. He swiftly handed me a script for 90 Oxycontin with refills. ‘I don’t think I need a drug addiction on top of my other problems,’ I told him. ‘Oh you won’t get addicted,’ he pshawed. This was years ago, but I don’t think he ever read a newspaper.”  — Sara, 51, NY

“I was undergoing fertility treatments and feeling really hormonal from the drugs. When I told my doctor, he said, ‘I think you need to get out of the house more. Why don’t you get a job at the mall?’ As if working at Cinnabon was the answer.” — Cathy, 39, Seattle, WA

Truth is stranger than fiction…

An Arkansas doctor with a love for weapons of mass destruction or a Delaware pediatrician with a basement dungeon!

If you thought the details of Joan Rivers’ death from complications during a routine endoscopy couldn’t get any more shocking, you’re wrong: Rumors surfaced today that the gastroenterologist who performed the procedure, allegedly snapped a selfie of himself moments before the procedure.

In 1999, a New York City surgeon carved his initials (a large A Z, if you’re interested) into the belly of a patient after he performed a Caesarean section.

In 2000, a surgeon left in the middle of surgery to run to the bank and cash his paycheck. He told his stunned OR team that he’d be back in about five minutes; he returned 35 minutes later.

It’s in the records…

If results from national survey can be believed, more than 2 in 3 U.S. doctors witness other physicians disrupting patient care or collegial relationships at least once a month.

More than 1 in 10 say they see it every day.

The survey involved 840 doctors, most of them leaders in their own physician communities.

“Disruptive physician behavior is the issue that just won’t go away,” says Dr. Barry Silbaugh of the American College of Physician Executives, which sponsored the project with the help of a Massachusetts-based group called QuantiaMD.

“Our profession is still plagued by doctors acting in a way that is disrespectful, unprofessional and toxic to the workplace.”

The college, he wrote, hopes the survey will shine a light on “the shadowy, dark corners of our profession” where doctors act in arrogant, demeaning and even physically violent ways.

Silbaugh likened it to pilots “fighting in the cockpit.”

He says stress, long hours and red tape contribute to the bad behavior.

“It’s not getting any easier in this era of reform,” he notes, “where the rules seem to shift from day to day and the financial rewards may be shrinking.”

A 14-page white paper put out by the ACPE cited these examples:

A prominent surgeon’s habit of degrading comments aimed at nurses and support staff eventually resulted in “shoving and pushing…in the OR.”

A doctor who was being monitored because of a long history of rudeness again yelled at a nurse, resulting in “a significant medication error and harm to a child.”

A male doctor created “an intolerable work environment for a female physician” through “condescending, bullying” and refusing to acknowledge her supervisory role.

Three-quarters of survey respondents say they’re concerned about disruptive behavior by fellow physicians.

Virtually all say it affects patient care.

A little over a quarter of doctor-respondents admitted they had been guilty of disruptive behavior at one time or another.

The most common reasons, respondents say, are workload and behaviors learned in medical school.

More than half the doctors surveyed say they’ve witnessed other physicians yelling, flinging insults, refusing to cooperate with other health care personnel and refusing to follow established rules.

Less frequent but not uncommon: Discriminating against colleagues or patients (24%), inappropriate jokes (40%), profanity (41%) and spreading malicious rumors (21%).

Least common, but disturbing, were cases of throwing things (14%), retaliating against perceived slights (13%), substance abuse (14%) and physical violence (3%).

The survey found mixed responses when it asked doctors how well they think their hospitals or practice organizations deal with bad behavior.

Perhaps not surprisingly, female doctors were less comfortable reporting or confronting instances of disruptive behavior.

Respondents say health care organizations should develop clear policies and procedures for confronting bad behavior, disciplining it and preventing it by improving the culture of the medical workplace.

There’s no way to know if the survey is representative.

Nearly 10,000 doctors were invited to participate, but fewer than 10 percent did.

“It is possible that the respondent group was either more interested in or more likely to have experienced or witnessed disruptive physician behavior,” the white paper acknowledges.


To subscribe to Epilepsy Talk and get the latest articles by email, simply go to the box on the bottom of the right column and click on “Follow.”











  1. Yep, it happened to me…extreme rudeness over the phone after a certain Dr. Felecia Ferguson informed me that she had responded to my to my employer’s request for additional information to my reasonable accommodation request. When I confronted her about it (politely), she became angry and told me “you don’t need and accommodation!” The woman went totally psyco. She’s no longer at the OHSU Epilepsy Center in Portland, Oregon…and neither am I. This happened in 2011. I actually Googled her name at the time and found another epilepsy patient had a similar experience. I will never forget how awful she made me feel during such a vulnerable time in my life. Shame on you Felecia Ferguson.

    Liked by 1 person

    Comment by Tom — May 23, 2018 @ 9:11 PM

    • Often doctors keep their attitudes, no matter who the person is or the situation.

      It’s so sad that you had to suffer this — at that time in your life, when I’m sure you were feeling about as low as you could go.

      I’m so sorry, Tom.

      Liked by 1 person

      Comment by Phylis Feiner Johnson — May 24, 2018 @ 12:00 AM

  2. All i can say is that the doctors are just human, just like everyone else, prone to mistakes and all the negatives that go along with human emotions.

    In dealing with docs for the last 12 yrs, i also have a lot of good stories and some bad about them. Here is my worst account. Late Friday, after work, i decide to get the mail, which i do once a week since normally all that comes are bills. Well in there was my Neuros analysis of my recent MRi i just had a few days ago. Well in the letter that normally states there was no return of my brain tumor, this letter said that the brain tumor had returned. OMG, i thought this could not be, i saw the MRI pictures and did not see anything unusual. Well figuring it was Friday, wasn’t much i could do in contacting them. My whole weekend was ruined, thinking that this evil brain tumor had come back. If you don’t know, my tumor was the size of a baseball and the reoccurrece level was pretty high. So after some tears and what not’s on Sunday i decided to email my Nuoro and the doc that did the surgery. I told the Surgeon that if i need to be operated on again i would want her to do it, since she did such a great job the first time and no one knows my brain better than her. 🙂 Well immediately on Sunday she replied back that the letter must be wrong because she just double checked and saw no reoccurrence. SHOOOOOooooo!!!! What a relief, 2 hrs later the Nureo replied back that there was an error in the letter. Doh!@#$!@# I’ll say.

    I forgave and still kept him as my doctor, he was an elderly man who you could tell was on major medications, since he could barely walk and walked with a limp and cane.

    But if you don’t like your doc, like you say, we pay for them, it’s our right to fire them and ask for someone more to our standards.

    Liked by 1 person

    Comment by Zolt — May 23, 2018 @ 9:13 PM

    • Thank goodness for a responsive and caring surgeon.

      To spend a weekend in such agony!

      Oh Zolt, you are always so generous and forgiving.

      But why keep a doddering neuro on as a doc?

      Is it your personal relationship or just shared battle scars. (Not to be punny.)


      Comment by Phylis Feiner Johnson — May 24, 2018 @ 12:08 AM

      • Well because this guy impressed me with his knowledge the few times i had visited him. I showed him an ear infection that my regular doc dismmised and said it should go away in a couple of days, well i told this doc and he knew exactly what it was and ordered me the proper medicine and the next day it was gone. Plus the first time i saw him he looked into my eye and saw something that is common with people that have brain tumors. Plus he helped me to get my drivers licence back after my grand mal accident on the highway. So i thought he was caring and put himself on the line for me. So you know i’m not going to get rid of the golden goose, just because it layed a regular egg once. 🙂


        Comment by Zolt — June 6, 2018 @ 11:01 PM

      • No, I can understand why.

        You’ve had skill and good fortune on your side.


        Comment by Phylis Feiner Johnson — June 7, 2018 @ 10:18 AM

  3. Actually I wasn’t at the Doctors office ! But I had waited on him and his family several times .My Doctor no longer worked with him he made a comment to me at a Restaurant while he was having dinner with his family. He thought he was being funny. I said I hated my Doctor had retired he was very good ! This Dr said well you could always take take dancing lessons from him, that’s what he’s doing know ! If you have a Fit you’ll just blend right in ! I was in Totally Shock !! A Doctor!! He was a Doctor!! No Respect!! So Sad !!

    Liked by 1 person

    Comment by Deborah Harmon Ference — May 23, 2018 @ 9:20 PM

    • OMG!

      Well, I guess he was “Dancin’ in the Dark.” Martha Vandella — Motown. (You’re probably too young to remember!)


      Comment by Phylis Feiner Johnson — May 24, 2018 @ 12:10 AM

  4. So that was my worst Doc experience, here is my worst nurse experience, it happened right after my Surgery for my brain tumor removal. Well after the surgery, they brought me out of my deep sleep, which was like at 12:30 am, after a 6 hr surgery. I was scheduled for 3pm start of surgery, but it was delayed. Asking the nurse why, she said that they are having complication on the brain surgery that is taking place. Not exactly the news i wanted to here, seeing how i was next. After the surgery, i was kept up so i guess i don’t go into a seizure of death. Attending nurse and i got to know each other in that time and soon enough it was almost 8 am when the new set of nurses come in to replace the ones that are leaving for the day. Well they roll me out of the post surgery room and into a room of my own, i thought cool, i’ll get to sleep some. In the center of the top of my head there was a hole remaining which had a tube coming from it and the tube went into a holding container that was on my lap. At that time it was almost full with blood. Well the nurse decided to empty it. Half an hour later, the new nurses for the day arrived and the others went home. Well my new nurse saw the bottle empty and decided i don’t need it anymore, probably since it was empty and that she weil just put the normal patches or what not’s on the hole where the tube was coming out. Ok, i’m here thinking it’s normal procedure. Well once that was taken care of i’m ok’d to try and get some rest. Well like a half hour into my resting, i feel wetness on the side of my head and on the pillow. It was blood, leaking from the hole. Pretty picture i must say. Not. Pressed the nurse button and was cleaned up and put a new patch on the hole and got a new pillow. Well I tried to get some rest, but then a short while later the same thing, blood was dripping from the hole. This time i came to the conclusion that the nurse took out the tube too early. So i demanded to see the Doctor in charge, and amazingly it was the Surgeon who came in and calmed my fears and did a better job of patching it up. Half an hour later the nurse came to check up on me and i could not sleep at all. She asked me if i felt any pain, I said yes i do, even though i really didn’t, or can’t remember, but she said to tell her from 1 to 10 how bad the pain was, knowing she would give me morphine, i told her 8. I slept well that day.

    But all and all, for what the hospital people go through, on a daily basis, I must say they are the best bunch of people i’d had the pleasure of knowing, especially thought the worst crisis of my life.

    Liked by 1 person

    Comment by Zolt — May 23, 2018 @ 11:25 PM

    • I was getting ill reading your account. (The suspense and horror, even though I know you are with us, here and now.)

      The play for morphine was a sly one Zolt, or maybe a case of just desserts.


      Comment by Phylis Feiner Johnson — May 24, 2018 @ 12:15 AM

  5. Ah Doctors behaving badly! Now there is a subject. I’ve met a few of those over the years… from the family physician who discounted my symptoms (later diagnosed by an MRI FINALLY ordered by another doctor in the same practice as a 8 cm meningioma) telling me that I needed to go to church; to more than a few bad experiences with neurologists….does that profession excell in bad behavior??? One neurologist refused to listen to my concerns about my anti-depressant medication….that I probably needed a higher dose. What he said was that I needed to go to school — study to be a nurse????? Later on, he was furious with me because I took it upon myself to go back to MD Anderson Cancer Center (where I had my craniotomy and original neuro-psych testing) to have a repeat neuro-psych test administered. The test revealed that, I would greatly benefit from changes, such as a higher dose to my anti-depressant medication, that I shouldn’t work no more than part-time OR better yet attend Project ReEntry, which is a brain injury rehabilitation program that tests progress, etc.and also helps to retrain for new job skills. Well, for one thing, my testing in math, came in at a fifth grade level. Be a nurse??? Yeah…right!! Anyway, I helpfully took the neuro-pscych test results back in to my current neurologist…(at that time), and he erupted! How dare I go without his ordering it!! Who was this doctor who administered this test? (She was well known through-out the US and he had actually previously said he had interned under her at one point). Yada yada yada. Needless to say…I found a new neurologist…. who also didn’t last very long…but I’ll not go into that one as this is already a long post. I am currently on my third neurologist….loved him at the beginning but….there seems to have been some sort of merger or changes at his office….I’m not pleased. Appointment coming in a couple of weeks….we shall see…..

    Liked by 1 person

    Comment by Ellen LaFrancis — May 24, 2018 @ 10:18 AM

  6. I worked in Intensive Care and received a patient after a face lift. The initial anesthesialogist was drunk and put anesthesia in patient’s food pipe. Her face was swollen and she was comatose. I was appalled. Now people are sighted with any alcohol to work along with smoking.

    Liked by 1 person

    Comment by red2robi — May 24, 2018 @ 11:50 AM

  7. There are some sites on the internet where you can write a review of a doctor, or read what others have had to say. It can save you a lot of grief. Here are a few:


    Or just do a search on a doctor, and see what comes up. I always do some research before going to a new doctor. If he/she gets 10 great reviews, and 2 negatives, you can usually discard the negative ones. But if it is the other way around, keep looking.

    Liked by 1 person

    Comment by Martha — May 24, 2018 @ 1:19 PM

  8. Like a Neurologist that was mad because I was afraid to have VNS; simply because I had proof from articles of only a 50 percent success- so he left the area where he’d been ‘practicing’ for some time.

    Oh, yes, another time to a dentist for x-ray and cleaning. He gets done with the exam and all; when I start to get up to leave, he like pushes me back down, “Oh, you might need a root canal” . Wish I’d had a hidden camera- he would have lost his job. I am sure he was only upset because my good results didn’t leave him with any way to make more money……………….

    Liked by 1 person

    Comment by Karen — May 24, 2018 @ 2:44 PM

    • I’m intrigued by the neurologist who left the area where he had been practicing.

      Was there something more?

      Don’t you feel that he was cutting his nose to spite his face?

      As for the dentist, I’m horrified. And sorry to say I had a similar experience.

      My (former) dentist wanted to do a procedure and I said I couldn’t afford it.

      So, he asked me how much money I had. And I told him.

      “Well, I guess I can manage to do it for that,” he said.

      Grubby little creep.


      Comment by Phylis Feiner Johnson — May 24, 2018 @ 3:03 PM

  9. Speaking of “grubby little creeps” with a camera, check out the current main gynecologist at the Student Center at the University of So. California, Dr. George Tyndall. For over 30 yrs he’s taken pics of women students during pelvic exams and fondled them unnecessarily. The school knew but seemingly looked the other way. Check it out online. Nauseating. I’ll present my own list of various Drs later.

    Liked by 1 person

    Comment by skolly9 — May 24, 2018 @ 10:53 PM

  10. Gag me with a spoon. Or just gag me.



    Comment by Phylis Feiner Johnson — May 25, 2018 @ 10:36 AM

  11. I had never imagined before that the medical profession, nurses, doctors & hospitals can turn into torment camps.

    And then one day, I ended up having grand mal seizures & woke up to find out that I’m handcuffed to ER hospital bed, begging for 3hrs to be released from the hospital to go home.
    All my plights & cries ended up on deaf ears, ignored by the ER Doctors & Nurses.

    Five hours later, thanks to my good friends coming to visit me at ER hospital bed, their horror of watching me handcuffed to ER hospital bed & my plight to be realised from the hospital had finally ended up being a threat of legal ramifications & criminal accountability for MEDICAL MALPRACTICE, which immediately sent clear strong message to the hospital, doctors & nurses, they will be held for criminal accountability, with my good friends accusing & witnessing the crime against a patient brought into the hospital for having grand mal seizures.

    As soon as my friends pointed out to CRIMINAL MEDICAL MALPRACTICE, my handcuffs were immediately removed & I was immediately realised from the hospital to go home with my good friends.

    After this experience, I always wonder how many millions of voiceless patients, helpless & defenseless lives are languishing in the hands of criminal nurses & doctors in the torment camps of the hospitals, healthcare establishments & medical industry EVERYDAY, for luck of strong government oversight & the government failing to revoke the license of criminal nurses, doctors & hospitals.

    In the end, having good family & friends to stand for the voiceless patients is the only protection the patients must count on to save their lives from medical abuse & maltreatment.

    Liked by 2 people

    Comment by BahreNegash Eritrea — May 25, 2018 @ 5:16 PM

    • Did this happen in the USA? If not, in what country did it take place?


      Comment by Martha — May 25, 2018 @ 6:05 PM

      • Yes Martha, It happened in California, USA.
        Shocking,,, isn’t it?
        Thanks to Epilepsy, I’ve come to learn a whole lot more than just “seizures & medications”.

        Like I said before, I NEVER imagined medical establishments & institutions can turn into torment campuses until I found out for myself the hard way.

        My friends visting me at the hospital intensive care unit, were so shocked at what they are watching in front of their eyes, they had to confront the ER Doctor FACE TO FACE personally & demand that he must immediately remove the handcuffs before they walk into the Hospital Manager’s Office & bring the Supervising Doctor to the ER floor to see & witness the MEDICAL MALPRACTICE & decide for himself.

        My friend still recalls, my throat was so dry from crying out for help for hours, he had to keep pouring water to my mouth to quench my thirsty, while I’m still handcuffed to the hospital bed.
        My good friend still remains in shock for what he had seen at the hospital that day, intensive care patients with tubes all over their mouths, noses, hands & legs, languishing motionless all around my bed, he prays to die in his own bed & his own home than in hospital bed.
        While some of my friends still criticize me for failing to file a lawsuit for MEDICAL MALPRACTICE against the hospital, I was simply relieved & happy to walk out of the hospital without further serious ramifications & damages, thanking God for the good friends who stood by me in the hospital intensive care gallows.
        Let’s hope the government oversight authorities to deeply get involved in monitoring the Hospitals, Doctors & nurses, who’re certified to care for patients in desperate medical needs.


        Liked by 1 person

        Comment by BahreNegash Eritrea — May 26, 2018 @ 7:22 AM

    • Gerrie, I cry every time I think of what happened to you.

      It’s indelibly inscribed in my mind and consciousness.


      Comment by Phylis Feiner Johnson — May 26, 2018 @ 10:30 AM

  12. Gerrie,
    You really should document what happened to you, shine a bright light on the incident. It’s the only way things can change. At the very least, the Epilepsy Foundation in California should know about this, name of the hospital, etc.

    Liked by 1 person

    Comment by Martha — May 26, 2018 @ 10:44 AM

    • Thanks Phylis & Martha for your compassionate understanding of the unfortunate predicaments some of us has been through.
      When I first started having seizures 20 years ago, I simply took it for minor inconvenience & taking some medications will eradicate the problem & stop the seizures.
      Little did I knew, I’m set for a long haul struggling to maintain normalcy the same way I had known in my life before.
      Unfortunately, I’ve come to find out the hard way, there’s a whole lot more struggle to overcome to maintain normal life with Epilepsy.
      God bless your hearts, I’m fortunate to find this website to share my experience & gain your inspiring support to keep my head up & keep going foreword, learning a whole lot more about Epilepsy & the struggle to survive the unpredictable seizures & overcome the unfortunate fallout of the medical malpractice & maltreatment coming from those who swore, certified & licensed to care for our wellbeing.
      While I still have the medical records & hospital release files of the whole incident of that day in my possession, reporting the Doctors, Nurses & the hospital to government authorities or Epilepsy Foundation has NEVER crossed my mind nor did I ever thought pushing the case further beyond being very proud of my good friends shaking up a medical institution to immediately release the “HOSTAGE HANDCUFFED TO HOSPITAL BED”.
      You may say, I’m in denial. Possibly so!
      It ain’t pleasant to feel voiceless, helpless & defenseless, languishing at the mercy of someone-else.
      Therefore, looking foreword for better days, feels a whole lot better than living with the same ordeal all over again.
      Again, thank you for your precious time, inspiring support & understanding to my struggle with Epilepsy.


      Comment by BahreNegash Eritrea — May 26, 2018 @ 5:51 PM

      • I realize what pain stirring up those memories would bring.

        Compounded by the pain of legal beagles, jumping down your throat with every word or accusation.

        Your decision is yours alone to make.

        And let me remind you again: You are an inspiration and a blessing to us all.


        Comment by Phylis Feiner Johnson — May 26, 2018 @ 5:58 PM

  13. Yes my most recent experience with the previous neurologist was like this. He was very ignorant. He didn’t pay attention to the side effects I was having. It started in 2015 when he tried to increase my Levetiracetam to 750mg twice a day-the “normal dose” from the 500mg twice a day I was on. I even tried to warn him that I don’t do well with “normal dosages.” Did he listen? No. Then when I started complaining about itching they dismissed it as a side effect without even seeing how bad it was. I continued to have worse side effects when I developed breathing issues, I checked with my pharmacist about it before I even got to an appointment with Dr. Carlson at the Medical College of Wisconsin. The pharmacist told me rhinitis, sinusitis, bronchitis, and other respiratory issues are a side effect of the Levetiracetam. When Iwent to the appointment to see him he threw statistics in my face about them being “rare.” I thought to myself “I don’t care how rare it is just fix it!” He lowered it back, but didn’t want to without adding another medication. He was a real pill-pusher! I probably should have known he would be from his response when I asked him about the possibility of working with my Functional Medicine aunt-he said “I don’t believe in that stuff, except for the Ketogenic Diet and Modified Atkins Diet.” He added Aptiom to the mix, which is where things really got crazy. I had side effects just from the 400mg pill. I couldn’t stay asleep. He started having his Nurse Practitioner see me in between and she was a real snob too. Her name was Candice. During the time they wanted to increase the Aptiom, I made the suggestion to go to 600mg first because it’s what the prescribing information said to do on its website. And since I was already having issues I didn’t want to jump straight to 800mg like he wanted so I insisted on going up slower. After awhile of arguing he agreed. I started to have the vivid nightmares. They wanted to dismiss it because they talked to a “Aptiom expert” up there and it wasn’t listed. Although, I’ve been known to have unlisted side effects of medications or an unusual one. Not like it’s not in my records that I have had “unique” side effects, after all I had stroke-like symptoms with Vimpat and my legs fell out from under me with Brand Keppra and Keppra XR. So, when I met with him about increasing again I was concerned and turns out I had a right to be. At 800mg I had more vivid nightmares and started getting shortness of breath and heart palpitations. When I first saw the Nurse Practitioner about the shortness of breath she told me I had a type of Social Anxiety. I was seeing a counselor for my emotional abuse. The abuse had nothing to do with the side effect of the Aptiom. They increased it to 800mg after awhile and once the heart palpitations started getting bad, I even made some suicide attempts, I went to the local ER and they drew bloodwork so I found out I was allergic to some inactive ingredients in the pills I was on, ALL of them. They overmedicated me and I was allergic. After finding out about the allergies I made a call tp my pharmacist and found out I could switch to the liquid forms of Levetiracetam and Topiramate. So I did that before I left. He also was going on a VEEG that was 8 years old and pre-surgeries! Like how can he tell about my seizures when that’s pre-surgeries and pre-diet?! When I switched doctors and systems in 2016, I startes coming off more meds, starting with the Lyrica during a VEEG in November 2016 after I got my neurophysiologist. This doctor is nicer, but his nurse acts likeva guard dog. I got fully weaned off Clonazepam daily by early December 2017-which I took 24 years total(I was first put on it as a child through high school-a pediatric neurologist, who was remorseful about putting me on it according to my mother and my neurologist I had during the surgeries was reluctant to put me bavk on it as a last resort). I had bad physical dependency coming off it after my neurophysiologist tried to take me off himself, so he let my Functional Medicine aunt takeover. The neurophysiologist though has been reluctant to take me off Topiramate after I started getting Raynaud’s phenomena though. He recently handed over my medications to my primary, who has been helping me wean off it-since my seizures seem to be no longer Epilepsy-related.


    Comment by trekkie80sgirl — May 28, 2018 @ 3:41 AM

    • In terms of the rash and itching: it sounds to me like you might have had Stevens-Johnson Disease, a rare and dangerous skin condition that can often be deadly.

      The Aptiom dose sounds toxic. And the bloodwork long overdue.

      These guys were inept clowns at best.

      It’s a living miracle that you’re here today. For which I am most grateful.


      Comment by Phylis Feiner Johnson — May 28, 2018 @ 12:22 PM

      • I too am glad, and thankful I lived tgriugh it. He probably would have gotten into more trouble had I actually committed suicide during the drug interactions. I don’t think my parents and fiancée would have put up with it if they found me dead. The fact that I had a high eosinophil level(which indicates allergy) from the same ER back in 2011(from Levetiracetam) and no one did anything then makes me wonder too. The fact it got to this extreme is pretty bad.


        Comment by trekkie80sgirl — May 28, 2018 @ 2:27 PM

      • Well, sure he would have gotten into more trouble if you committed suicide.

        But that’s a bit more than a reprimand.

        That’s your life. Not his stupidity.

        And the fact that you could have died from it is horrifying.


        Comment by Phylis Feiner Johnson — May 28, 2018 @ 2:47 PM

  14. I was dumbfounded to discover how bad some doctors can be in this world. As a child, I understood they were not gods, only human, and subject to the flaws we all tend to have. Later in life however, then I discovered certain aspects of people in the medical profession that left me dumbfounded such as the tendency NOT to like science or math (many get in to medicine precisely because they do not like either), most of medicine is rote recipe-following (yes, you first have to recognize the recipe to execute), inflated egos without proper checks and balances can blind a practitioner to their own foibles, civil litigation may help provide some checks and balances but also creates cultures of extreme conservatism and group-think. And so it goes.

    All that aside, there is a tendency for the rest of us — for all humans in many circumstances actually — to concentrate on the spectacular failures while ignoring the scores of successes and good work. That is one of the common human foibles I mentioned.

    One of the things I found out to help myself out, and this helps both me and the doctor, is learning more of what they know so that I communicate with them in their language. I find it helpful to develop a model for how doctor’s think. I also know that, short of life-threatening and other immediately critical problems, that patience on my part can be a virtue.


    Comment by Nicole Tedesco — May 29, 2018 @ 10:53 AM

    • How right you are!

      We must be our own advocates. For who knows your body better?

      And sometimes, it’s us who know our medicine better.

      Because, after all, whose best interests are at heart?


      Comment by Phylis Feiner Johnson — May 29, 2018 @ 10:57 AM

  15. Just the sentence “Doctors behaving badly.” made a number of memories “Pop” back into my head. I remember one Neuro had me loaded up to about 2400 mg of Felbatol once. That medicine does help with my seizures, but that much made it so I just couldn’t concentrate, and had to drop out of college, just before I had enough to get a Bachelor’s Degree in Sociology. Which I became interested in because of the way Society is so timid when it comes to Epilepsy. I complained to this Neuro about that, and he just relaxed back in his big desk chair and said “Education is of no concern.”
    Another one didn’t care how tired the medications made me. My Mom was complaining to him about that, and he just rolled his eyes and said “What do you want? sedation or seizures?” She kept on complaining, but he rolled his eyes again and said “What do you want? Sedation or Seizures?” Thankfully that guy was just for a second opinion that was no good. I’ve also dealt with others, who were like walking pieces of dry ice.
    But thankfully, I’m now seeing an Epilepsy Specialist who is both very good and understanding. She’s even had me go up to Johns Hopkins to get the opinion of another Specialist. They had me take another try at Vimpat. Turned out out no good again. But Hopkins even kept in touch with my family to get me off of it, and said they were considering me as a candidate for a second operation.

    Liked by 1 person

    Comment by David Jensen — August 6, 2018 @ 2:54 PM

    • Obviously David, the first neuro was a shining example of what he believed: “Education is of no concern.”

      And kudos to the second one for doing his job so compassionately. Just drug him up with sedatives, he won’t care about his epilepsy anymore. (No brain, no pain?)

      But at least you hit the jackpot with the third doc.

      A true specialist who hooked you up with John Hopkins and wasn’t afraid to be challenged.

      Wish they were more like her.

      Are you going to have surgery?


      Comment by Phylis Feiner Johnson — August 6, 2018 @ 4:26 PM

      • Thanks Phyllis! I’m definitely glad that the first two neurologists, both from the University of Virginia, are both way back in my history of dealing with neurologists. I actually found the Epilepsy Specialist who I’m going to now, simply by getting on the Internet! I was going to Virginia Commonwealth University, and the neurologist there was nice, but he was getting to the point where he didn’t know what to do and was constantly postponing my appointments. One morning I had a seizure that literally threw me over my bed, and I landed face down in a recliner I have in my room. I thought to myself “OK, that’s it with VCU.” After having breakfast I got Online and looked up neurologists in Central Virginia. No good luck. So I switched to Epilepsy Specialist in Central Virginia. One of them had a video, so I thought I’d see what she was like. I can tell you, Phyllis, my mouth must of dropped open in a state of shock 😱😱😱 and happiness 😃😃😃! Because she was saying that she got into Neurology because her father had Epileptic seizures that were uncontrollable, so as she said she understood Epilepsy from both sides of the coin. Even my mom and my sister like her. But after watching her video, I just sat there and slowly and quietly said to myself “I think… I have… found….. the…. one….”. Even the Specialist who I saw at Johns Hopkins was like that!🤗 They want to arrange for another appointment, either this or next month. I don’t know what they would say about one of those Depth Electrode tests, but they said they were going to consider it if the Vimpat didn’t work, and I’m not afraid of another operation, with all of the new technology they have. My sister even said to me, that she had talked with one of their neurologists on call, about how they had diagnosed my Simple Partial Motor seizures as Non-Epileptic, and the Vimpat had calmed them down somewhat, when Vimpat doesn’t do any good for “Non-Epileptic” seizures, and he said to her “Good Question!”. It’s like I’m a walking mystery to every neurologist. But I just think of the brain as a little Universe, with a lot of unknown Quadrants left to be discovered.


        Comment by David Jensen — August 6, 2018 @ 9:08 PM

      • You found her on the INTERNET? Some angel must have been smiling over you! And one who was intimately acquainted with epilepsy. 🙂

        I think you’ll enjoy this article:

        A Neurologist Talks About His Own Epilepsy…


        Meanwhile, please keep us posted on your health and surgery. And keep on being persevering and proactive!


        Comment by Phylis Feiner Johnson — August 7, 2018 @ 8:30 AM

  16. Yes- if doctors want to take the profession, they need to remember that not just ‘they’ have feelings and emotions, patients do also. Like the time a Neurologist tried to talk me into having a VNS. Recent reading showed the low percentage of success; I was scared and figured I could be in a worse condition than I already was. He goes out, slamming the door.

    He returned in about 5 minutes saying, “well, guess that’s all for today”………………yeah, right. Next thing I knew he had left town for elsewhere. God help any other people that face up to him.

    Oh, and some of the other comments. LIke one time I was in for female exam. (and this was a woman nurse also.) She finishes the exam, and went to apply a cream, and giggled when she did it…………………..
    pretty nervy.


    Comment by Karen — August 6, 2018 @ 7:50 PM

    • Good thing for you that the doc left town.

      But a very sad commentary…

      For many, medicine is a vocation, not a calling.


      Comment by Phylis Feiner Johnson — August 6, 2018 @ 7:56 PM

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.

    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.

    View Full Profile →

    Enter your email address to follow this blog and receive free notifications of new posts by email.

    Join 2,806 other followers

    Follow Epilepsy Talk on WordPress.com
%d bloggers like this: