Epilepsy Talk

Who’s at Fault? | May 29, 2018

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 often 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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Another article of interest:

Your Hospital Rights…  https://epilepsytalk.com/2010/09/28/your-hospital-rights/

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









  1. My son cannot get a job because he cannot drive because he is epileptic. he has sleep apnea and only seizes when asleep. Why cant he drive?


    Comment by Jackie Roe — May 29, 2018 @ 1:24 PM

    • Regardless of whether he has nocturnal seizures or not, the after effects of the seizures and the AEDs alone, make him a liability on the road.


      Comment by Phylis Feiner Johnson — May 29, 2018 @ 1:43 PM

    • I can related to that. I have nocturnal night seizure disorder.


      Comment by Joy Stewart — June 2, 2018 @ 2:28 PM

      • You probably know this already but: According to an article in Journal of Neurology, Neurosurgery & Psychiatry, if more than 90 percent of your seizures occur while sleeping, you are said to have sleep seizures.

        The article also notes that an estimated 7.5 percent to 45 percent of people who have epilepsy have some form of sleep seizures.

        Since seizures occur in sleep during the night, it’s often hard to diagnose them, except for unusual movements at night, confusion upon awakening, bed wetting or falling out of bed.

        However, these symptoms are also a kind of parasomnia — an umbrella term for a group of sleep disorders that include night terrors, sleepwalking, teeth grinding, and restless leg syndrome.

        It’s believed that sleep seizures are triggered by changes in the electrical activity in your brain during the stages of sleeping and awakening. Most nocturnal seizures occur in stage 1 and stage 2, which are the stages of lighter sleep.

        And nocturnal awakenings are sometimes confused with insomnia. Epilepsy patients are often unaware of the seizures that occur while they sleep.

        They may suffer for years from daytime fatigue and concentration problems without ever knowing why.


        Comment by Phylis Feiner Johnson — June 2, 2018 @ 2:31 PM

  2. Along with a seizure disorder(simple partial seizures for 25 years – I’m 68 now) I developed secondary adrenal insufficiency from long term steroid use for asthma. When my seizures became more severe and frequent, along with my SAI symptoms, I was placed on dilantin. I did my own research and discovered that dilantin speeds up clearance rate of cortisol – I have to take oral steroids several times a day to stay alive! So I was under-dosed on my steroids, and one of the symptoms of critically low cortisol is – you guessed it – seizures!

    Liked by 1 person

    Comment by gailmcarthur — May 29, 2018 @ 2:35 PM

  3. This resonates with me as you know.I have proved the medication I was prescribed caused my mental illness.
    I recently had a solicitor look at my case they told me I could be looking at suing for criminal medical negligence.As it stands I cannot sue as I complained about the side effects and “Adjustments” we’re made to my medication.Oh the irony.

    Liked by 1 person

    Comment by Berenice — May 29, 2018 @ 3:13 PM

    • I don’t understand. Just because you cited the side-effects, you can’t sue? Because they “listened”. At what point? To what end?


      Comment by Phylis Feiner Johnson — May 29, 2018 @ 3:28 PM

  4. Even if your doctor is competent (or better than competent), there are so many variables with epilepsy and with each individual patient. You always have to do some of your own research. Every AED has its own web site. Example: topamax.com, keppra.com, etc. There you will find the dosing information that is too small to read when it comes with the prescription. There is contact information for the manufacturer. I called the manufacturer of Keppra in Smyrna, GA to ask if the “behaviors” we were seeing with our son could be caused by the drug. All of their customer service representatives are chemists (and probably more knowledgeable than many M.D.’s). I was expecting them to say, “You’re the first person who has ever complained.” But that is NOT what they said. They knew very well that Keppra is not tolerated well by patients with developmental disabilities. The neurologist we were seeing did NOT know that (and probably most others didn’t know it either). The customer service representative I spoke with encouraged me to ask our neurologist to call her for corroboration!

    You have to do your homework, ask questions, challenge authority. If your doctor doesn’t like that, find another doctor. Granted, I’m an “advocate,” and not the person who actually has epilepsy.

    Liked by 1 person

    Comment by Martha — May 29, 2018 @ 3:42 PM

    • Brilliant! And a wonderful advocate you are, Martha.

      If only we all had the same common sense.


      Comment by Phylis Feiner Johnson — May 29, 2018 @ 3:47 PM

      • I think epilepsy can shake your self-confidence, so you may not be as assertive as you should be. If at all possible, find an advocate, and take that person with you to medical appointments. An extra pair of ears is always helpful.

        Liked by 1 person

        Comment by Martha — May 29, 2018 @ 3:59 PM

    • Eden, You are very inspiring infomative women.
      I admire your devotion & dedication to find out more & dig deeper to advocate for & help out your son & many other people desperately trying to control their seizures & overcome the difficult road to deal with the Medical institutions.
      Thanks for sharing your information, some us are learning from your experience, on how to better survive Epilepsy & understand the chemistry behind the medical institutions.
      Wishing you all the best in your journey to advocate for the wellbeing of your son & many more voiceless masses coping with Epilepsy.

      Liked by 1 person

      Comment by BahreNegash Eritrea — May 29, 2018 @ 7:40 PM

      • Sorry Martha, I confused you with Eden.
        Now, you know, taking Dilantin & Keppra together ain’t much of fun, to keep my attention & memory FOCUSED on the immediate situation.
        I apologize for the mix-up.

        Liked by 1 person

        Comment by BahreNegash Eritrea — May 29, 2018 @ 7:46 PM

    • Your own research…………..absolutely. I don’t think doctors really know what they should with today’s medications for Epilepsy. LIke recently- I had researched and realized two drugs that were causing problems i.e memory, balance, etc. I had been cutting down on one which helped very much. A recent visit to a Dr. and they told me ‘not to cut down anymore’. Hmm. So guess that
      means they want me to continue to have side-effects on top of other problems.

      Liked by 1 person

      Comment by Karen — May 29, 2018 @ 11:39 PM

  5. I could give countless instances of the lack of proper treatment by doctors and hospitals over the years all the way up to last week. It is endless. If it weren’t for my husband being there I could have died many times. The last hospital I went out of my way to go to because it is a neurological hospital. The neurologist did nothing. So, now I stay home. My last thought is that once I was in a store acting strange, out of sorts. They actually put me in my car. I drove out on the desert. Epilepsy is one of the most misunderstood disorders.

    Liked by 1 person

    Comment by Barbara Monroe — May 29, 2018 @ 7:55 PM

  6. I lost my insurance after my divorce and a new doctor decided to switch my epilepsy meds, which where working fine, for a newer drug that would also make me lose weight. And so indeed I lost weight but I also began my 12-year period of bipolar mental illness with continued medication changes (which I was unaware of at the time). I switched doctors several times, ended up in the hospital with major clinical depression twice and the third time I was one week in the hospital so they could change all my meds back to the original ones from 12 years prior. Epilepsy is bad, but add bipolar to that… I just thank God I’m alive to tell my story.

    Liked by 1 person

    Comment by Ann — May 30, 2018 @ 9:25 AM

    • OMG. At least you had the strength to stay alive.

      I’m so very sorry you had to suffer. But I’m glad you’re here to tell your story.


      Comment by Phylis Feiner Johnson — May 30, 2018 @ 9:39 AM

  7. Thank you. You nailed it. I have no faith in my neurologist and not much in the medical system.

    Liked by 1 person

    Comment by R miller — May 30, 2018 @ 9:50 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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