Epilepsy Talk

Who’s at Fault? | October 26, 2020

Instead of humane and compassionate treatment, doctors, hospitals and the legal system are treating epilepsy patients with little or no regard for their condition.

Here are some chilling examples:

A Dearborn doctor falsely diagnosed hundreds of kids with epilepsy and was richly compensated ($350,000 extra!) for “bringing business to the hospital.”  Many of the children were put on dangerous drugs that made them sleepy and in some cases suicidal.

A British man was abused by Christian Brothers, and locked in a mental hospital for 33 years as an “epileptic”.

A woman in Pittsburgh was handcuffed, shackled and restrained during an epileptic seizure because the police suspected her of being on cocaine.

A hospital in England admitted that a doctor misdiagnosed epilepsy or over-prescribed drugs for 170 children.

A woman had her Dilantin level ramped up – due to erroneous blood tests — and she ended up in a different hospital the next day on life support.

A 5-year-old boy died after being given seven times too much of an anti-epilepsy drug.

It’s interesting that whenever a crime or harm is done to a person with epilepsy, or as soon as the person’s epilepsy becomes known, the accused are veiled in immunity.

Any claims by someone with epilepsy that they have been physically abused are written off or ignored, stating that the person cannot function properly with their degree of epilepsy, and that additional treatment is necessary to prevent the incident from happening again.

The degree of the outcome is basically irrelevant, from inflicted emotional trauma, to assault and battery, to robbery, kidnapping, rape, and murder.

And, to add insult to injury, people with epilepsy experience these atrocities at a much higher frequency, because they are regarded as having something “wrong” with them. 

The results of the harm will most likely be written off because the person had epilepsy. Therefore they don’t “count.”

Even the number of witnesses, the degree of evidence, and the presence of law enforcement officials are basically irrelevant.  Most people tend to turn their heads and pretend nothing happened.

Well-documented cases with complete sets of video, don’t sustain punishment, legal action, correction, change in policy or even change in protocol.

And so the blame goes to the victim.  (Are they insinuating that we’re all nuts?)

This resulting denial of “equal protection under the law” is an additional abuse.

It’s sad to know, the very “authorities” who swore to protect, serve and save our lives, can be as deadly as the epileptic seizures we are forced to live with, everyday.

Elsewhere, this country would call such abuse as crimes against humanity.

In most states, having a seizure is technically illegal, and while prosecutions are not many, they do happen.

When prosecutions happen, many states only allow the insanity defense, which strongly implies that the government itself regards epilepsy as a form of mental illness, in addition to the prejudiced public.

Above are publicly documented stories.  The private stories below are as personally traumatizing and horrific to believe, no less prosecute…

Like the lady who was almost convinced by doctors to pull the plug on her 16-year old daughter’s life support, because they asserted her young life would no longer have any “quality”.

The patient who came into the ER experiencing non-stop seizures who was considered too loud and unruly, so he was placed by nurses in a room down the hall, where the staff and waiting room patients would be spared the “scene.”

Nobody took the time to check on him until 30 minutes later by which time he needed to be put on a ventilator and subsequently died.

In Quebec, patients with epilepsy were written off as “crazy” and were imprisoned in a psychiatric hospital, where they were strapped to their beds all night, kept abusively in straitjackets, or left zombie-like from too many drugs.

“I have woken up in four point restraints.  Been injected with medication that caused me to have Grand Mal seizures.  I have also been on toxic doses of AEDs, which is part of the reason why I am now so physically ill.”

“I was put in the Harborview Psychiatry Intensive Care Unit for treatment of my epileptic seizures.  Epilepsy?  No. Insanity?  Yes. Or so they concluded in their wisdom.”

“I have been denied food, meds, sleep, needed medical care, etc.  Whatever happened to healing?  Prisons get more attention, but the problem is much worse in hospitals.”

“I made a good life for myself until I tried to get help from the medical establishment.  Once they started ‘taking care of me’ and not allowing me to take care of myself, that’s when everything went out of control and I got so seriously ill, I could no longer work.”

Laws are being broken, rights are being denied, people are suffering, being abused, ignored and dying.

Exactly what is the definition of a “doctor”? A “hospital”? Or “legal rights”?

And what does it take for someone with epilepsy to be treated with care like a real, bona fide patient?

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  1. I was advised recently by my doctor to not wear a Covid mask because of the restrictions on breathing it presents and consequent danger of provoking a seizure. Instead I am to always carry a medical certificate stating my condition of having epilepsy to show to authorities who might object to my not wearing a mask. This would be valid only for walking outdoors. To enter any store or other edifice requireing masks, I would have to comply at my own risk. I’m wondering how the “authorities would react in this day and time??

    Liked by 2 people

    Comment by andy — October 26, 2020 @ 3:11 PM

  2. I think if you’re outdoors and carry your medical certificate with you, everything will be ok.

    As for indoors, all bets are off.

    Although some people choose not to wear masks out of selfishness and blatant disrespect (after all, it’s the other person who is at risk), there is no saying you are not one of them.

    However, I think your certificate should be viable indoors as well as outside.

    After all, there are people with NO conditions that are not being stopped for their refusal to wear masks.

    So, the seriousness of your condition must be taken into account and respected.

    Liked by 1 person

    Comment by Phylis Feiner Johnson — October 26, 2020 @ 3:23 PM

  3. This all makes me think just how settings are used with the VNS, RNS & DBS, to which Don’t they all have their own sources of electrical energy for the brain ? I got to thinking, TOUCH an electric fence around a garden. You can not hold to that wire for 1 second or 2. So How is are these settings adjusted, so called at a perfect setting, so that the brain is not harmed by any of these gadgets? The brain never feels any pain, but it will & does reject unstable brain chemistry that will in most cases cause a seizure, headache or whatever. What is normal with these gadgets that a brain may never accept, due to the fact that any of these gadgets are NOT a part of the normal human body parts we were born with. Are these things all FAKE like what we watched on TV with the 6 MILLION DOLLAR MAN & THE BIONIC WOMAN ? How are they adjusted so that none of us would ever have 1 seizure of ANY type happening to us ? That is what they are to be used for, but there is ALWAYS those failures that every doctor says these are no cures or healing gadgets to end all seizures. So WHY HAVE THEM ? I am only property that belongs to God & no doctor ever has a right to abuse me or my brain with gadgets, or drugs. It’s time they learn that & very quickly before a person who has a seizure condition is never able to decide WHAT & HOW they want to live their life gets accepted from the medical world & all the epilepsy advocates who really never cares to understand US, but they always understands the medical world & the FDA & BIG PHARMA who uses us a RATS.

    Liked by 1 person

    Comment by James D — October 26, 2020 @ 7:05 PM

  4. I’ve always been treated bad by my neuros, thinking I’m fighting perhaps with my focal seizures, recently started a complaint and it went to the top, I had a meeting with the head of the neuro dept and other bigwigs, who all admitted the service was poor, underfunded, understaffed (I’m in N Ireland), but nothing’s been done to change it

    Liked by 1 person

    Comment by Gail Barry — October 27, 2020 @ 4:01 AM

    • I guess you can only hope that with awareness will come change.

      But, I do agree, your situation is deplorable.


      Comment by Phylis Feiner Johnson — October 27, 2020 @ 9:36 AM

    • Great work,,, 👍!
      Your bravery to stand up for yourself & demand better medical treatment from the medical establishments has finally paid off, for the oligarchy to listen to your complaints & address your concerns.
      Keep it up, you’re doing a lot of good more than you’ll ever come to know for many more voiceless people who has been & still remain languishing in negligent cycles of medical tragedy.

      Liked by 1 person

      Comment by Gerrie — October 30, 2020 @ 11:56 PM

  5. Had VNS implanted 3 years ago. MD’s kept increasing intensity while decreasing shock time to where they couldn’t track seizures. During COVID-19 now telehealth appointments so no reading of the device. I finally asked for the device to be read and turned off. When read 11% of battery life left which stunned both me and MD. Made me think of those with pacemakers too. If not actually read, then nothing will be done until trauma happens putting person at extreme risk.

    Liked by 1 person

    Comment by Kerri Keating — October 27, 2020 @ 11:42 AM

    • Kerri, something similar happened to a friend of mine.

      At first, his VNS was working great. Then over time, it became less and less effective, to the point that he was having two seizures a day, even using his magnet.

      It turned out like you. The battery was seriously low and if he hadn’t caught it in time, I hate to think of what would have happened.

      As it stood, even with his low-powered VNS, his seizures were very violent, including tongue chewed up so badly that he couldn’t speak or eat and — blood everywhere.


      Comment by Phylis Feiner Johnson — October 27, 2020 @ 12:19 PM

  6. Thank you Phyllis! Thanks to those who discussed vagus nerve stims too. I am being empowered by your advocacy.

    Liked by 1 person

    Comment by Kimberly Koehler/ Billie Dove — October 31, 2020 @ 7:54 AM

    • If I can be of any help, please just sing out.

      And if you want to subscribe to Epilepsy Talk and get the latest articles, simply go to the bottom of the right column, enter your email address and click on “Follow”


      Comment by Phylis Feiner Johnson — October 31, 2020 @ 10:15 AM

  7. I’ve been reading up on stigma, particularly the stigma attached to epilepsy. It shares with leprosy, lung cancer and obesity the perception that people with this condition are flawed morally, and are sub-human. Therefore there is no reason to listen or to treat them / us well. Often we share this viewpoint ourselves. There is much work to be done.

    Liked by 1 person

    Comment by HoDo — October 31, 2020 @ 11:25 AM

    • Laws in the United States and Great Britain that prohibited epileptic people to marry were just repealed in the late 1980s and early 1990s.

      Until the late 1970s, legislations in the United States also prevented epileptic people from entering public buildings such as restaurants, shopping centers, and theaters. [US Department of Health]

      Although these laws are no longer in effect, the underlying social divisions that they have created in the past thirty years are still present today.

      In most states, having a seizure is technically illegal, and while prosecutions are rare, they do happen.

      When prosecutions happen, many states only allow the insanity defense, which strongly implies that the government itself regards epilepsy as a form of mental illness, in addition to the prejudiced public.


      Comment by Phylis Feiner Johnson — October 31, 2020 @ 11:29 AM

      • Illegal!? How can a seizure be illegal? Expletive! Expletive!

        Liked by 1 person

        Comment by HoDo — October 31, 2020 @ 12:12 PM

  8. 😦


    Comment by Phylis Feiner Johnson — October 31, 2020 @ 12:18 PM

  9. Having been through this tormenting & humiliating experience, handcuffed to ambulance & hospital bed for baseless suspicion of illegal drug overdose while I was having grandmal seizures, reading this article exposing the many crimes still being committed against defenseless patients in their dire time of need for medical remedy, makes me question the integrity of the hospital industry.
    And considering there’s a whole lot of recorded data available to legally prosecute the criminal doctors & abusive hospitals tormenting epilepsy patients for decades, it makes me wonder what does it take for the “public officials & law enforcement” to step in & stop the maltreatment of the helpless people fighting for their lives every day?
    While the old days of ignorance may NOT have been suited to understand the deep cause & effects of the complex medical disorder, how did the days of civilized society & space exploration failed to understand the traumatic consequences of medical maltreatment to the people who’re already struggling to survive the brain disorder?
    The crimes & injustice being imposed on epilepsy patients fighting for their lives should NOT be tolerated in civilized society.
    Therefore the parallel struggle for justice & better medical treatment must go on unabated!

    Liked by 1 person

    Comment by Gerrie — October 31, 2020 @ 1:17 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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