Epilepsy Talk

Who’s at Fault? | July 22, 2017

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?

Another article of interest:

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

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  1. Yes,, and we who live with seizures all our life, are all looked at by these neurologists that if we are not cured or healed by now, 20 + or 50 + years, we will not be any important patient for them to have any compassion for curing or healing us. So make sure as I have had for the past 35 years WHAT is in every AED, they want all of us to take. Also compare these drug chemicals to all the food chemicals in our foods. There will be no surprise to anyone where all chemicals will soon be in all foods & drugs,, when these doctors will then say,, WELL FOODS ARE MEDICINES & MEDICINES ARE FOODS. They are saying that more today, while ignoring the chemicals in BOTH drugs & foods & drinks that are killing us. The book EXCITOTOXINS,,, The Taste That Kills will explain all I mentioned, written by Dr. Russel Blaylock who was a brain surgeon. I’m sure Dr. Ben Carson would not agree with Dr. Blaylock on most things he talks about in his book. When any brain of any child gets damaged by drugs, HELL is not harsh enough a penalty for those neurologists who does that.

    Liked by 1 person

    Comment by C D — July 22, 2017 @ 7:40 PM

  2. Unless a doctor can count you among his/her “successes,” you’re a failure. 😦

    Liked by 1 person

    Comment by Phylis Feiner Johnson — July 22, 2017 @ 8:09 PM

  3. Condemned for being possessed by demons, you would think the ancient days of lynching victims/patients of Epileptic seizures are long gone.
    Unfortunately, surviving Epilepsy & the torment, abuse & deadly encounters with the modern day civilized world’s medical establishment does NOT prove that the ancient days of lynching seizure victims has changed much, either.

    Thanks to my good friends blasting into the hospital emergency room, forcing the ER hospital “Doctors” to release me from being handcuffed to intensive care unit bed for two days for my Grand mal seizures presumed blacking out & hallucinating from illegal drug overdose.

    How long must the Epilepsy victims take the criminal torture of wicked establishments?

    It’s long overdue for the Epilepsy patients, families & organizations to fight against the criminal establishments gambling with our lives for profit.


    Comment by Gerrie — July 22, 2017 @ 11:32 PM

    • Who’s the one who should be arrested?

      Good thing you were almost dead, you might never have gotten out of there. (No humor intended.)


      Comment by Phylis Feiner Johnson — July 23, 2017 @ 9:44 AM

  4. ER had my drug allergies including Tegretol, which I became allergic to after 16 years of use. They put me on a floor and noted I was in status. They injected me with 2 medications. One I do not remember but my Epileptologist later told me it was Tegretol. I am grateful to be alive ! It is on my Medic Alert badge and my history.

    Liked by 1 person

    Comment by red2robi — July 23, 2017 @ 1:48 PM

  5. one time went to hospital put on ventilator,For three days no diantin.given ha e grand mals.had all my recordsfor some reasondidnt seem inrush to giveme them no troublewith other meds.couldnttalk for almost 3 days final?y mywife rea!ized it.Also notice when epilepsy mentioned even medical people try tochange subject..


    Comment by Robert Therrien — July 23, 2017 @ 3:33 PM

    • They HAD all your records but didn’t read them? What did they think they were. Comic books?

      No mention of epilepsy, no meds? Why did these people think you were there?


      Comment by Phylis Feiner Johnson — July 23, 2017 @ 5:13 PM

  6. What was the psychiatric hospital in Quebec?


    Comment by philamisan — July 23, 2017 @ 4:37 PM

  7. I wanted to vomit after reading about the abuse of the boy in the orphanage who was “saved” by a seizure, and sent to a psychiatric hosp until he was an adult. From one hell to another. And all the others who have suffered and are suffering……….


    Comment by skolly9 — July 23, 2017 @ 8:21 PM

  8. These things, suck, no doubt about it. It will always happen now and then, but do what you can do. Protect yourself, wear ID with epilepsy on it (Road ID is a current favorite), teach others about seizures in venues available to you such as First Aid Classes, Company Safety meetings.


    Comment by Kate Jacques — July 24, 2017 @ 9:07 AM

    • I believe strongly in education and advocacy. Because these are acts of sheer ignorance. (With a little malice thrown in for extra measure.)


      Comment by Phylis Feiner Johnson — July 24, 2017 @ 9:17 AM

  9. I was diagnosed with epilepsy in 1976 by a neurologist that told me I had gran mal seizures. So for years I figured that was a type of seizure so I believed it. Then in late 70’s I started studying more of the sciences and not once did they ever teach about epilepsy as if it didn’t exist. My neurologist wasn’t much help and I wanted to know more so I started asking professors question at a university I was attending and again no one could answer any of my questions. Then I changed my major again but this time to psychobiology (biological psychology) to maybe get some answers. Now I was finally starting to actually learn something about the brain. It was confusing but at least I was finally making some headway in understanding this complex organ called the brain. Finally I realized to figure out anything I’m going to have to run my own experiments on myself to get the answers to my questions. Many people now still believe gran mal and petite mal are actually seizures and they are not. The closest thing those terms are can be classified as two categories of numerous specific types of actually seizures. I also have been an advocate for others with epilepsy starting decades ago and just over a decade ago I started teaching people without epilepsy about this condition and what it really is all about. I have so much information now and although it is advanced neuroscience and can break it down and explain it so it understandable and makes sense. Something a specialist will never take the time to do. It did take years for me to do but I have been able to answer all the questions I had. One of the last things I was able to figure out years about is why we forget or don’t remember what we did during a seizure. No one could ever answer that question for me, but I know the answer now. I also know every different type of seizure I’ve had and can easily tell you what they are. I’ve had over 35,000 seizure over 4 decades and 8 specific different types, but I had to figure all of them out and also my triggers. I have explained much of this to specialists in different fields of medicine and I can tell by the look on their faces they have no clue what I’m talking about. It totally confuses all of them, but it is all factual and I have proved all of it without any of their help. Sorry that was long but that is barely even scratching the surface of all the information I have been able to figure out. I have nurses and other people tell me I should write a book when they have taught them some of what I know.


    Comment by Cary Tice — August 20, 2017 @ 8:18 PM

    • Cary, hats off to you!

      My only question: Why didn’t you take your psychobiology brilliance with you to medical school? There’s a lot of people who could learn from you.


      Comment by Phylis Feiner Johnson — August 20, 2017 @ 9:38 PM

      • I never went to medical school. Much of what I know and have figured out no one in the medical field can understand at all. It is all factual and I can prove it, but not one understands any of it. To them if it’s not in a book than it doesn’t exist. I use my seizures as a learning tool. I figured out that I could stop many of my seizure by myself when I was in my early 20’s almost 4 decades ago. I told my neurologist that I could stop many of my seizures and he didn’t believe me. Then one day in he office I could tell I was about to have one so I stopped it while he was talking to me. Then I told him what I had just done and now he knows it is possible, but he thinks very few people can do it and he is totally wrong. I know that many types of seizures people are able to stop. I’ve done that thousands of times. I don’t have an aura and never have had one, but I can tell when something is about to happen. I can actually feel it in my brain the abnormal firing of action potentials. I can’t tell you how many are firing probably in the millions by the time I can tell something is about to happen and I know at that time I can actually fight it off and keep it from spreading any further. I read one time to try to piece together what was actually happening in my brain when I stop a seizures and what I could figure out was so complex I can see why no one can understand it. Just the fact that I can feel abnormal firing in my brain totally throws them. They can’t even understand that, it makes no sense to them at all.


        Comment by Cary Tice — August 21, 2017 @ 8:52 PM

      • I can see why it throws them. It would throw anyone. It’s almost like a prescience.

        But what I meant was why didn’t you go to medical school to TEACH? The medical field would be a better place with you in it.


        Comment by Phylis Feiner Johnson — August 22, 2017 @ 8:04 AM

  10. To figure out and understand what I’m talking you literally have to have epilepsy for any of this to make sense. I have found this is so advanced it is extremely hard for anyone without epilepsy to understand. Some people with epilepsy can understand it to some degree but those without this condition are totally lost. It doesn’t matter how educated they are it just confuses them. I try to teach specialists in different fields of medicine and as soon as I go off script (talking about something not published) they can’t follow any of it. I lose everyone in 60 seconds of less and then they are totally lost. I try to make it simple to understand and I still lose any specialists. They will never be able to understand what I’m saying. It’s like try to teach calculus to a 4 or 5 year old child. That’s the best analogy I can think of.


    Comment by Cary Tice — August 22, 2017 @ 2:37 PM

  11. It has crossed my mind many times, but I’ve never written a book before. If I did it would have to be based on my life and experiences with this condition. Almost daily I’m learning more things about this condition and it is pretty crazy stuff I’m finding out. Crazy as in fascinating and thinking “Wow was that ever wild and interesting”. Sometimes I’m almost speechless at something I’ve just learned that I hadn’t notice before. I’m off some of my meds now after changing my diet and also using CBD also to help control my seizures. Months ago I was so drugged with these powerful meds I was missing a lot. Now I’m seeing more of the seizure and I can literally diagnose what is going and how it is affect different areas of my brain. About an hour ago I started having a seizure and using my technique just stopped it from spreading any further and totally stopped it. It was a complex partial seizure but you can easily stop them, but if you let them progress it gets much harder to stop them, but although it is much more difficult you still have the ability to stop them.


    Comment by Cary Tice — August 23, 2017 @ 2:38 AM

  12. If you ever get the chance read the story about H.M. and see what you can pick up from that story. All neurologists know this story and many others in the medical field usually will read it as well. It took me awhile to get finally get to that story but when I finally read that story it finally answered a question I had about epilepsy that no one ever gave me. To me it was easy to see a huge link in that story. Tell me if you can see it also or was it the way I approached the story as I read it. I think when many people read that story they totally miss something I saw. It seems when people read this story they only think that was interesting and just move on and don’t realize there is a lot more there than just a story about brain surgery on patient. When I explained what I had learned when I read the story it seemed as though he didn’t recognize what I saw. I know I’m a bit vague, but I want to know what you see in that story when you read it.


    Comment by Cary Tice — August 28, 2017 @ 12:42 AM

  13. H.M. is a person with epilepsy that went through a number of surgeries in an attempt to stop is seizures. You can search for it on the internet – the story of H.M. and you will find a number of links written by different people about it. I know it is in advanced neuroscience books also. I read it in a book I have “The Principles of Neural Science”, you might find that book at a university and if you are lucky maybe a Junior College, but I don’t think any public library would caring a book like that. Hope that helps.


    Comment by Cary Tice — August 28, 2017 @ 2:04 PM

  14. I read it in one of the chapters in my book “principles of neural science”. I’ve also seen it on the internet written by different people. I never read a book about H.M.


    Comment by Cary Tice — August 29, 2017 @ 3:19 AM

  15. Phylis, I was wondering if you read about H.M. yet and if so what did you think ?


    Comment by Cary Tice — September 1, 2017 @ 5:12 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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