Epilepsy Talk

Who’s at Fault? | April 13, 2019

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/

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  1. Yes. Please have a Representative contact me, as Epilepsy is considered an American Disability. No one today wants to take it, into consideration, as far as, the medical condition of Epilepsy and how it is controlled, assisting someone when they forget to do something and much more. I will be happy to speak or assist you in any way, since I have had Epilepsy since birth.
    Rita McDonald in Covington, LA

    Liked by 1 person

    Comment by Rita McDonald — April 13, 2019 @ 12:20 PM

  2. Hi ,my son was overdosed on depakote in Winthrop Hospital in mineola NY.
    No apologies , it caused him to actually have a seizure and extremely high levels of ammonia in his blood. This was not the first time he was treated badly in a hospital. Basically here in NYC or long island they consider you to being drug seeking when brought to emergency room with a seizure because you ask for 2 days worth of pain meds because you seized and fell backwards down the stairs . Besides the fact that after a grand Mal even if you did not fall it feels like someone beat you with a baseball bat . Every time my son went they drug tested him because of his age. They caused him to have PTSD when it comes to hospitals. And you cannot sue them either. When the depakote caused him to seize they did not even have lorazapm in the room. But they have the iv of depakote in his arm. Why are they not taking out the part of the chemical chain in anticonvulsants that cause the side effects. Is it because there is more money in side effects ? Epileptics are victims of abuse by big pharma , the FDA and the doctors themselves.

    Liked by 1 person

    Comment by Tom — April 13, 2019 @ 12:35 PM

    • I’m so sorry your son went through all of that horrible misery.

      Yes, there are dangerous additives in the meds. So, they are diluted, to our disadvantage.

      (Every generic has 80% of the actual formula in them and 20% “filler”.)

      And probably the drug manufacturers make big bucks on these missing links.

      I also think that the ER knows nothing about your son.

      And if possible, you should have your doctor intervene.

      (Yes, easier said then done in a moment of crisis.)

      P.S. But how could they not have emergency drugs in the ER?


      Comment by Phylis Feiner Johnson — April 13, 2019 @ 1:07 PM

      • First of all they should have had it. They had moved him to fast track because ER
        Was getting full. And no they did not
        Have it, in fact the nurses did not even the name of the drug my wife had to tell them. We also had the renowned Orin Divinsky after that . He wanted him to go on vimpat. But my son after being on every other drug and experiencing horrific side effects refused vimpat being the last one he has not been on. At NYU no less Divinskys partner who was my sons nuero before the hospital incident told him to man up about the side effects. Man Up ? Having keppra rage , onfi causing more seizures , Steven Johnson syndrome , depression, anxiety, insomnia which triggers his seizures. As of now he is on the only barely tolerable medicine which is zonegram and klonopin. He went from 160 lbs and is down to 120 lbs. He has JME by the way and constantly has muscle spasms and what he calls brain zaps. He was offered the ole frontal lobotomy which is not an option in our opinion.

        Liked by 1 person

        Comment by Tom — April 13, 2019 @ 1:37 PM

      • Orin Devinsky did this? I’m horrified. I always held him up as THE doctor of integrity and talent. But I guess you’re here to prove me wrong. 😞


        Comment by Phylis Feiner Johnson — April 13, 2019 @ 3:17 PM

  3. Seriously I could not read every word of this article. I did read enough of it to know what i have been saying for over 50 years that I and everyone else living with seizures are NOTHING BUT PART OF A MAJOR SCAM & CONN GAMES with our brain in the way they all treat us, & their FALSE hopes & lies they tell us. It’s like as long as we go with THEIR FLOW,, we may be idolized by them as so great warrior or example, so long as we ONLY DO WHAT THEY WANT IS TO DO,, and that is to MAKE THEM MONEY !!. yet lets us tell them I WANT MY SEIZURES TO STOP FOR LIFE, & will not do anything that may risk having MORE seizures, that they believe you should try because you never have done what they suggested, & if you say NO, then suddenly you are not important. Like about last MEMORIAL DAY in 2018, 1 week before that I had a 6 hour VEEG done. Since then I have NEVER heard the results of that 6 hour test, & that was at a #4 epilepsy center in Winchester Va. So Am I important to them, as they only called in a 1 time reorder of my XR LAMICTAL which meant BIG BUCKS for that doctor as I do believe it does work better than regular LAMICTAL works. But I am nothing to them otherwise, unless they would keep me from driving & add MORE STRESS to my life. So I say with NO REPORT on that test of the VEEG No News Is Good News. If i ever do die from a GRAND MAL seizure, then I will consider that A WIN, as I will be home finally & have a life totally different from the HELL that I have lived on this earth. No rejections are there in Heaven and everyone would be glad to see me who maybe may rejoice of me being there with them. Can’t wait.

    Liked by 1 person

    Comment by C D — April 13, 2019 @ 1:35 PM

    • I would rather not have you leave this earth to find happiness. Although I know that’s where your soul lies. And is life is hell for you, there must be something better.


      Comment by Phylis Feiner Johnson — April 13, 2019 @ 3:11 PM

    • My mother deliberately had me drugged out and drove me to a mental hospital

      Liked by 1 person

      Comment by Rodney minnis — April 14, 2019 @ 6:34 AM

      • Oh Rodney, how horrid. I’m so sad.

        The last quote in this article was by Mark Farnum (a member of our group).

        He died three years ago.


        Comment by Phylis Feiner Johnson — April 14, 2019 @ 9:43 AM

  4. I agree with everything that has been posted here, but the solution is staring us in the face. It is time to take charge of our own health care since “the professionals” obviously aren’t doing so well.
    How do we do that? Get on the Google machine and start doing the research yourself and open your mind to non-pharmacuetical solutions.
    The keto diet is not some extreme fringe thing. It was the standard of care for epilepsy before the much more profitable AEDs were invented.
    Personally I have gone beyond the keto diet to a completely carnivorous lifestyle and it has resolved my seizure disorder completely. Keto helped a lot and is a good place to start but, for me, carnivore was the magic bullet.
    No, I can’t guarantee that it will work wonders in any one person’s individual case. But if we are willing to try all these poisonous drugs, what are we unwilling to try something as side-effect free as ketosis?
    What do you have to lose except your seizures?

    Liked by 1 person

    Comment by paleobird — April 13, 2019 @ 2:32 PM

    • I do believe in the Keto diet and taking charge of your health. (Who else cares?)
      But I hesitate to put all of my eggs in one basket. Keto is definitely a good option, but I think, combined with some
      of C D’s beliefs, it could prove to have stronger benefits.


      Comment by Phylis Feiner Johnson — April 13, 2019 @ 3:24 PM

  5. I was overdosed with Keppra and oxcecarbaphine! I was losing my sight and lost it for one day after a seizure. he Imidutly took me off Keppra and put me bake on Onfi and changed Oxcecarbophine to Oxtellar XR. I kept my doctor, he has never made a mistake again.

    Liked by 1 person

    Comment by abbycat3175@gmail.com — April 13, 2019 @ 3:00 PM

    • Did you overdose under the doctor’s care or just yourself by mistake? Because that’s a lot of faith to put in one doctor, if he made such a serious mistake!


      Comment by Phylis Feiner Johnson — April 13, 2019 @ 3:28 PM

  6. Thanks to Epilepsy, I’ve been through many of the incidents you’ve described in your article, I’m surprised how & why I’m still alive today, to make it this far.
    In the very beginning, I thought my seizures were bad until I found out that the tormenting ordeals, wanton maltreatment, deliberate sadistic abuse & humiliation that comes along with epilepsy are by far worst than my seizures.
    If I could only have it my way, having my seizures in my own private space without attracting unwanted attention, I would avoid being treated like a criminal in the humiliating ride & excruciating gallows of the hospital industry.
    But confused, disoriented & desperately trying to get it together after surving another seizure, the luxury to seek legal aid for the unjustified maltreatment of the hospital industry vanishes like a mist to thin air, for it gets difficult to precisely record, recall & report the whole ordeal, making it harder to file legal claims against the tormenting industrial complex.
    In the end, the overwhelming need to control the seizures become more important priority than going through the stressful difficult highway to fight against the establishment.

    Liked by 2 people

    Comment by BahreNegash Eritrea — April 13, 2019 @ 4:06 PM

    • Some people say they’d rather have the seizures than the reactions…punishment…and discrimination of others.

      Your discrimination and punishments have been extreme.

      I do’t know how I would have gotten through them.

      But you do so with a strength and dignity that I envy you for.

      Liked by 1 person

      Comment by Phylis Feiner Johnson — April 13, 2019 @ 6:34 PM

      • Phylis,
        As WWII proved, human race surviving atomic war to rise above destruction & build vibrant destiny for generations to inherit & treasure, the willpower to live & make the most out of life is formidable driving force to let seizures & social injustice leak under the skin to give up on the beauty of life.
        As Shakespeare said, “I used to cty because I had no shoes, until I saw a man who had no legs”.
        Therefore, looking at the full circle of a beatiful life, seizures & social injustice are just minor inconvenience to let the disorder tear down the treasure of a lifetime.
        “We shall overcome, someday”. MLK


        Liked by 1 person

        Comment by BahreNegash Eritrea — April 21, 2019 @ 12:01 PM

      • So true. And so eloquently said.


        Comment by Phylis Feiner Johnson — April 22, 2019 @ 9:27 AM


      Liked by 1 person

      Comment by Kathy S.B — January 19, 2020 @ 12:01 PM

      • A caring, understanding and passionate partner. So willing to put your life on the line for justice.

        Liked by 1 person

        Comment by Phylis Feiner Johnson — January 19, 2020 @ 12:43 PM

      • Thank you Phylis but in all honesty maybe that’s our job. Because we see the world in a very different way than those who are not epileptic do and we are at times all we have for eachother. It almost feels as though it is our duty to speak up or nobody else will.

        Liked by 1 person

        Comment by Kathy S.B — January 19, 2020 @ 1:03 PM

  7. V powerful and sad. We also see this in meryl streep’s film ‘to do no harm that doctors would rather medicate or carry out brain surgery than consider dietary change. Even though medical marijuana is available in some states in America unfortunately it is not yet readily available for those in the UK with certain types of epilepsy. It seems as if the medical profession are not forward thinking enough in this area.

    Liked by 1 person

    Comment by sharonrossblog — April 13, 2019 @ 4:39 PM

    • If the medical profession can have you “under their control”, why should they stop?

      Sure, there are dietary, natural and alternatives available.

      But when was the last time your neuro told you about them?


      Comment by Phylis Feiner Johnson — April 13, 2019 @ 6:37 PM

  8. According to a 2016 article in the British Medical Journal medical mistakes were the third leading cause of deaths in the US after Cancer and Cardiovascular disease. That is scarry, it means going to a hospital for example is more dangerous than riding in a car or living in a area with weak gun controls. Indeed statistically speaking flying or mountain climbing are far less risky than the mere act of getting medical treatment. However, in the vast majority of cases getting medical treatment is much safer than not getting such treatment. So, despite the horror stories on occasions we have no real option but to seek medical treatment.

    However, isn’t it true that we not our doctors are primarily responsible for our own basic health (a balanced moderate diet, exercise, social interactions, etc.) and surely this means we need to learn as much as we can about our own medical condition (epilepsy and any other condition) from the internet and talks sponsored by our local hospitals etc – and – from interactive sites such as this one!

    Liked by 1 person

    Comment by Michael H — April 13, 2019 @ 4:45 PM

  9. This is so sad !!! We get treated like dirt we are like everyone else trying to survive trying to get the help that we need we don’t need to be ostracize we do not see anything that reflects our condition on TV in society

    Liked by 1 person

    Comment by maryleeparker — April 13, 2019 @ 5:01 PM

  10. Doctors in ISRAEL are having some good results for anyone with ANY brain condition one may have. I have heard there are many tests there being done that never gets noticed here by the CDC, & NIH that could do a lot of us some good to have tested for us. Maybe some group of people who have seizures, ”could go to ISRAEL if they can afford it, and get their CONDITION treated on rather than the symptoms & controlling those, that 90% or more of neurologists here FAIL TO DO for us. I don’t know about anyone else, but I that I ever wanted was to have a SEIZURE FREE LIFE from as far back as I can remember saying that. My DOB is 6-25 6 months b4 or after Christmas, so every 6 months I hope for the next 6 months to be seizure free for AFTER my birthday & AFTER Christmas. but it always has to have at least 1 or more in those 6 months. 2011 was my BEST year ever in this 21st century & MOST of 2012 was until a GRAND MAL & Concussion happened & nothing has been like 2011 since. Each day that passes by I am 1 day closer to death & home forever with NO seizures.

    Liked by 1 person

    Comment by C D — April 13, 2019 @ 5:26 PM

    • So C D shall we all orchestrate an exodus to Israel? (Just joking.)

      I only wish you could have a video tape replay of your best seizure-free year.

      Liked by 1 person

      Comment by Phylis Feiner Johnson — April 13, 2019 @ 6:50 PM

  11. The DOCLANDMED site gives you information on “treatment abroad.” For Epilepsy treatment in Israel go to :


    There are 15 such hospitals listed for Israel, several are ***** (five star) facilities. The best is said to be the world famous Assuta Medical Center in Tel Aviv. However Germany has 46 facilities several of which also have five star ratings. One of the best is said to be The Helios clinic Berlin-Buch. However you must admit that if one can afford it the MAYO CLINIC and the JOHN HOPKINS are hard to beat.

    Liked by 1 person

    Comment by Michael H — April 13, 2019 @ 6:56 PM

  12. No his sidekick who he writes papers with Dr.Pacia told him to man up . Devinsky wanted him on depakote. My son refused 7ntil he had 3 seizures 8n 1 day and fell and broke his hand
    He called us to go to the hospital and when we picked him up he said he took the prescribed amount for the 1st time . When we arrived at the ER. we told him he had just taken the recommended dose of 350mg. This was at 10 pm. At 1 am they gave him more saying his blood levels were not high enough. Then again at 7am. Finally he said he wanted to leave. That the depakote was making him feel weird. Then they said we want to start an iv with it. My wife convinced him to stay and try it. She was desperate and beside herself. That’s when he seized off it. Then we were able to see the the esteemed devinsky who then suggested vimpat. Which he will not do, he was then offered the surgery. He is now diagnosed with major depressive disorder, drug resistant, PTSD, and 9f course drug resistant epilepsy JME.

    Liked by 1 person

    Comment by Tom — April 13, 2019 @ 6:58 PM

    • Dr. Pacia saved one of my best friend’s lives, after a botched brain surgery.

      I wish he had been more successful with your son.

      I’m so sorry.


      Comment by Phylis Feiner Johnson — April 13, 2019 @ 7:03 PM

  13. Mine was further down the chain; coworkers, and local police, and local medical personnel. An absence seizure became a violent and scarey episode for all involved, as they had no idea what they were dealing with (they were assuming it was drug-related) I came out of the episode restrained in a hospital bed, badly bruised, and deeply humiliated as no person involved was willing to discuss what happened; A police officer was called to my job, he tried to stop me from wandering by grabbing me, I took a swing, and it devolved from there. At the corporate level, it’s understood, but locally, they are too uncomfortable with epilepsy. But, I can empathize with their not wanting the responsibility, nor should they, of caring for someone during a seizure. So much can go wrong, and with that, what is their personal/legal accountability? “They should have done this, or that.” doesn’t work because they really don’t have to do anything but call the ambulance. Of course, while waiting, lot’s can happen, but, again, do other’s need/require anything more but compassion to guide them before that ambulance arrives?

    Liked by 1 person

    Comment by Allen — April 13, 2019 @ 7:19 PM

    • There needs to be police, and first responder’s education. As well as at the ER.

      People in this position NEED to know how to behave, especially if you’re in a violent post-ictal stage.

      Saying they don’t understand doesn’t take the inherent responsibility away from them.

      You are in a compromised position, for which you should not be punished.


      Comment by Phylis Feiner Johnson — April 13, 2019 @ 7:33 PM

    • Allen,
      I have been in your situation a couple of times, once I got arrested by the Police presuming illegal drug consumption for having a seizure & another time I got handcuffed & restrained to Ambulance & ER hospital bed, until my good friend walked into the hospital watching me in tormenting restraint & deplorable situation, WARNED the ER Doctor for medical malpractice.
      Now I’m banned from going to the same Supermarket I had been shopping in for 30 years & banned from the county Public Libraries I’ve paid my hard-earned taxes for more than 30 years, because of my seizures.
      The humilating experience of criminalizing my seizures finally forced me to wear “MEDICAL ALERT CARD” like a budge of honor, defining my seizures & family contact numbers, to avoid more tormenting experience in the hands of strangers.
      It’s just incredible to imagine that mass murderers shopping for machine guns got more privileges than Epilepsy victims having access to the Public Library or shopping grocery in a supermarket.

      Liked by 2 people

      Comment by BahreNegash Eritrea — April 14, 2019 @ 3:19 PM

  14. Honestly what I wish and my son wishes is that they are honest. Say you are experimenting and you don’t know . Be honest ! And stop with the one size fits all. Each and every person is different. Just because you have seen it before does not mean they are all the same. The doctors should be advocating for side effect free meds period. Every anti convulsant causes anxiety, depression and suicidal idealation. What’s up with that ? It’s almost like its built in on purpose. Sorry for the rant but when your son wants to go to Switzerland commit assisted suicide because he cannot take it anymore……

    Liked by 1 person

    Comment by Tom — April 13, 2019 @ 7:48 PM

  15. Oh Tom. I feel for you. You’re not ranting.

    I understand and couldn’t agree with you more. 😦

    I’m so sorry.


    Comment by Phylis Feiner Johnson — April 13, 2019 @ 8:13 PM

  16. Thank you phylis.

    Liked by 1 person

    Comment by Tom — April 13, 2019 @ 9:40 PM

  17. Why can’t we put more money and time into Research to find a cure for Epilepsy….Seems more interest is given into research for every other.


    Liked by 1 person

    Comment by Krystyna Browne — April 13, 2019 @ 9:55 PM

    • Public and private funding for epilepsy research lags far behind other neurological afflictions, at $35 a patient (compared, for instance, with $129 for Alzheimer’s and $280 for multiple sclerosis).

      Where’s The Funding? Epilepsy As An Orphan



      Comment by Phylis Feiner Johnson — April 14, 2019 @ 9:18 AM

    • Imagine how much money is being spent to making & waging wars all over the world, compared to medical researches that could possibly protect, help & cure medical difficulties many people are suffering from?
      Sad to note that the misplaced priorities are doing more bad than good to protect human lives.

      Liked by 1 person

      Comment by BahreNegash Eritrea — April 14, 2019 @ 9:35 PM

  18. On the flip side to our being victims of crime- kind of related:
    Thankfully it seems to have stopped now, but I remember reading crime reports in the newspaper where accused in violent crimes were reported as being epileptic. Never diabetic, asthmatic, or a heart condition. But somehow it was important to tell the public they had epilepsy. The implication of course being epilepsy can be a contributing factor to violence. This would’ve been into the 1990s and we were still dealing with the ‘mentally ill’ connection in a big way then. Seeing things like that in print made me sick, it was just continuing another of the old myths about how we’re supposedly violent and dangerous as well as crazy.

    Liked by 1 person

    Comment by Katie — April 13, 2019 @ 10:08 PM

  19. The only thing that many consultant seem to know is put the dosage up. My Keppra was put up to 3000mg daily. This seemed to increase my seizures to one every 5 days. So I had to stop work. I have a theory about why this happened… My liver(or kidneys) would clog up with toxins all the toxins would go to the brain and the brain would do the only thing it knew what to do in that situation-seize. So I took myself off them to half the dose….My seizures have stopped…coincidence??? I think information is suppressed by the drug companies because if such information was acted on in a relevant way by the consultants then I guess the drug companies would suffer! But it should be because I can’t have been the first patient such symptoms have happened!!! But the consultant refused to acknowledge the seizures were symptoms of the drug keppra.

    Liked by 1 person

    Comment by teachersian — April 14, 2019 @ 5:36 AM

    • Keppra definitely affects the liver in a harmful way. A high cost to pay, I agree.

      And you’re right, its not a coincidence.

      But did you replace the Keppra with another AED?

      The Perils of Discontinuing Your Meds



      Comment by Phylis Feiner Johnson — April 14, 2019 @ 9:38 AM

      • I haven’t discontinued them completely but reduced the AEDS. I have no intention of discontinuing them completely, and in the worst situation I have CBD crystals from a Dutch company, which I hope are slightly better for the unfortunate liver.

        But the main problem is the drugs by creating liver problems, can cause additional seizures. So the drug companies should be searching for drugs that do no cause liver problems or by finding a new drug, these new AEDs should cause additional seizures.

        Valproate worked brilliantly for me, and it started to cause liver problems. A different consultant suggested to up the dose which again caused more seizures, in any case I think this drug is now difficult to obtain in the UK.

        There is no magic solution unfortunately, but, if the liver packs up I will definitely cease to exist. Therefore since the drugs unfortunately fail to control the seizures in any case, I have decided to reduce the drug to at least the level where it does not make them worse.

        But I think many people with seizures are faced with this problem unless they are exceedingly fortunate and need only a small dosage of monotherapy throughout their lives to control their seizures.

        Liked by 1 person

        Comment by teachersian — April 15, 2019 @ 4:42 AM

      • I agree completely.

        Having our bodies compromised is not a solution.

        Yet it seems to be a way of life.

        Epilepsy Drug Side-Effects


        You are smart and clued into your body. Not everybody is so.

        But there is no “magic bullet”.

        No matter how pro-active and well-informed you may be.


        Comment by Phylis Feiner Johnson — April 15, 2019 @ 10:12 AM

  20. On reading about the number of people with epilepsy who are miss treated. I was deliberately drugged out for about 8years.my mother tried to hide the fact she was 15when she became pregnant with oldest brother. Reguards lance minnis

    Liked by 1 person

    Comment by Rodney Minnis — April 14, 2019 @ 3:35 PM

  21. Rodney, this is what Mike Farnum said:

    “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.”

    Mike Farnum died.

    Happily you are still here, with us.

    Even though your experiences were quite horrible, you are a survivor!


    Comment by Phylis Feiner Johnson — April 14, 2019 @ 4:18 PM

  22. Me too with a chance for another 2011 year of no seizures. And when I ask about taking a drug that I think did help in the past for me, I was told NO, that a drug normally does not do what it did when you were on it the 1st time, than what it will after going off of it & back on it again 7 work the same ways. So do you think anyone in congress would help pay the bill to go to ISRAEL for seizure treatments & maybe a cure for anyone with seizures ? Now THAT is a joke, but it is no joke that this country could be doing better for us than what they do for BIG PHARMA & GADGET industries that do little to nothing for any of us.

    Liked by 1 person

    Comment by C D — April 14, 2019 @ 5:44 PM

  23. I hated reading this. I tried NOT to think about these things happening to Rose. Where is the empathy and compassion?

    Liked by 1 person

    Comment by Flower Roberts — April 14, 2019 @ 8:49 PM

  24. As a patient and a social worker I have been a lifelong advocate of those who have endured health related trauma. It is so wonderful to have communities of bloggers but what else can we do bring about changes?

    Liked by 1 person

    Comment by skolly9 — April 14, 2019 @ 11:43 PM

    • Epilepsy Talk, to many of us, is a family.

      Where we share and learn, care and comfort.

      And advocate those rights held so dear to our hearts.

      And lives.

      We can support, advocate and educate, but that’s about it.

      We have such a very small universe.


      Comment by Phylis Feiner Johnson — April 15, 2019 @ 10:16 AM

  25. First of all Phylis, than you for all your comments…

    I would like to add that part of the problem is that many people with epilepsy have idiopathic seizures.

    So the consultant’s answer is something as follows:
    ‘Epilepsy is extremely complicated…we don’t quite understand it.’

    So therefore, their answer is to up the dosage. Without doing what consultants are supposed to do i.e look at the effects of putting up your dosage. This may be causing the seizures in the first place.

    Isn’t it time for the consultants to start looking more seriously at the seizures pattern, and try and present a more critical analysis of any changes that might have taken place.

    Therefore I would like to take this opportunity to say ‘Come on consultants, try and present a more critical viewpoint. Perhaps it’s the diet or hormones. The answer is not always upping the dosage. This may after all (and acknowledged in some scientific articles) part of the problem.

    I must admit to having a fear of going into hospital because of a seizure.

    Liked by 1 person

    Comment by teachersian — April 15, 2019 @ 11:47 AM

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

    You are joking?

    What sort of country do you live in , how can epilepsy be a crime ?

    Liked by 1 person

    Comment by Mark — April 17, 2019 @ 6:40 AM

  27. Welcome to the down South and Midwest.

    A little behind the times, yes?


    Comment by Phylis Feiner Johnson — April 17, 2019 @ 10:17 AM

  28. It may be that someone mistook the kind of seizure that police might do of private property with the kind of seizure that can come with epilepsy. Police “seizure” is indeed illegal in many places. I’m not convinced that epilepsy-related seizure is. Clarification is needed.

    Liked by 1 person

    Comment by Gretchen Herbkersman — July 8, 2019 @ 3:42 PM

    • And first responder education is needed desperately…police, firefighters, EMTs, and the public at large.

      Just yesterday, I tried to explain about epilepsy first aid to a stranger. He literally cut me off, mid sentence. 😦


      Comment by Phylis Feiner Johnson — July 8, 2019 @ 4:15 PM

      • Phylis,
        If the first responders aid crew, the Police, Ambulance technicians, Fire Fighters, Doctors & Nurses are NOT trained enough & capable to help victims of medical hardships including epileptic seizures, they should NOT be employed to provide services they are NOT trained for neither make wrong decisions against the people who claim to rescue, complicating the victims ordeals & hardships.
        It’s long overdue for families, communities, society, Epilepsy organizations, advocates & medical lawyers to stand shoulder to shoulder united together & fight against those who are making our lives more difficult than it already is.
        The criminal abuse of patients in desperate need of medical attention should NOT be tolerated in any civilized society.
        Holding the “rescue crew & medical establishments” accountable for any miscalculated adventure, abuse & maltreatment is the only way to protect & safeguard the lives of patients in desperate need of life-saving medical attention.
        The Epilepsy Foundation may need to have a very strong voice in training, testing, hiring, inspecting & supervising the “first aid crew” to stop the maltreatment & abuse of victims of Epilepsy.

        Liked by 1 person

        Comment by BahreNegash Eritrea — July 8, 2019 @ 11:05 PM

  29. I know our particular Epilepsy Foundation has lectures and classes for first responders, police, firefighters, nurses, teachers, students and the general public.

    Which is fine. But they have to participate for it to do any good.

    You know what they say: “You can lead a horse to water, but you can’t make it drink”. 😦


    Comment by Phylis Feiner Johnson — July 9, 2019 @ 8:41 AM

  30. That is exactly why I fear going anywhere in the United States of America!! As you can tell I am obviously from Canada. However the same thing has actually happened to myself in my own little town hospital a long time ago!! I woke up and simply asked where my grandma was? I was then tied down to my bed (arms and legs) and had something put in shoved in my mouth to keep me quiet. When my grandma did return they told her I was being “UNRULY AND FIGHTING BACK”, therefore they were FORCES TO TIE ME TO MY BED AND MORE LESS MUZZLED!!!!!!! Which is EXACTLY WHY NOW IT IS ALWAYS MY BIGGEST FEAR (ENDING UP IN THE HOSPITAL) ESPECIALLY WITHOUT ANYONE AT ALL TIMES!!!!!!! So I just PLAIN OLD REFUSE TO GO OR EVEN TELL ANYONE IF AND WHEN I HAVE A SEIZURE!!!!!!! Now is that REALLY THE LIND OF WORLD WE “EPILEPTICS” and “FAMILY” want to be In? As I said before and will continue to say (it was actually a nurse and doctor who said this to me too) “ALL IT TAKES IS FOR A PERSON TO SLIP ON THE SIDEWALK OR HIT THEIR HEADS AND THEY CAN END UP WITH EPILEPSY!!!!!!!”. SHAME ON SOCIETY THEY SHOULD KNOW BETTER!!!!!!! Lol goodness I believe the SMARTEST MAN IN THE WORLD “ALBERT EINSTEIN” had epilepsy!! Society now seems to reap the benefits of his inventions and BRAIN POWER!!!!!!! Makes me wonder WHO’S THE HYPOCRITE NOW?! No epileptic or family should EVER BE ASHAMED OF WHO THEY ARE!!!!!!! HOLD YOUR HEADS UP AND BE PROUD OF YOURSELVES!!!!!!! For WE FIGHT BATTLES NOBODY (EVEN LOVED ONES) COULD EVER BEGIN TO UNDERSTAND HOW TO LIVE WITH EVERY MOMENT OF EVERYDAY OF OUR LIVES!!!!!!! I AM PROUD OF ALL OF US!!!!!!! GOOD JOB!!!!!!! And please DON’T EVER STOP BEING YOU!! 😘🙏🏼🦅😇💞😘

    Liked by 1 person

    Comment by Kathy S.B — January 18, 2020 @ 11:26 PM

    • Kathy,,, I understand your concern for I’ve been in your shoes before.
      Thanks to my good friends & family members who came through my difficult times, I was set free to go home from the tormenting & humiliating experience I never imagined possible coming from the “rescue crew”.
      After this fateful incident, it’s just very hard to trust the integrity the “professional experts” who come to your rescue.
      In my case, I’ve included my EMERGENCY CONTACT NUMBER to call in the emergency alert card I carry around, which has discouraged further abuse & maltreatment in the very hands of the rescue team & hospital industry.
      I feel sorry for those who got no one else to come for their rescue from the abusive maltreatment of the hospital industry.
      Good luck to your struggle to control your seizures & the hardships of “medical establishments”.

      Liked by 2 people

      Comment by BahreNegash Eritrea — January 19, 2020 @ 5:54 AM

      • I also have Arthur as an emergency contact on my phone, which of course would only help if they went into my handbag, which in some places is not allowed.

        But friends and allies are the only way to possibly make it through. As you know from being a prisoner of the system.


        Comment by Phylis Feiner Johnson — January 19, 2020 @ 10:42 AM

      • Goodmorning Gerrie 😊🙏🏼🦅😇😘. It just really hurts when it almost makes epileptics curl into a ball and then have to go through that when they have no support or someone to be there for them because they feel backed up to the wall. Then the people were supposed to trust end up being the ones who almost do the most damage (psychologically) to us in the midst of their ignorance or lack of empathy. I have epileptic friends who have been thrown in Jain for having a seizure trying to maintain the independence and other who have had to face the wrath of ignorant none tolerant medical staff and it just upsets me when people quickly forget it’s just takes a knock on the head or even get to get epilepsy and it could happen to them and their loved ones anytime anywhere as well. Thank you for COMPLETELY UNDERSTANDING MY CONCERN AND TOUGH FEELINGS FOR US IN OUR DEFENSE. Please be well and please take care Gerrie and thank you for your caring and compassionate 😘. Just so I know you’ve been told at least once today I GREATLY APPRECIATE YOU AND YOUR WORDS AND SHARING OF LIFE EXPERIENCES AND WISDOM!! 😘🙏🏼🦅😇💞😘


        Comment by Kathy S.B — January 19, 2020 @ 11:16 AM

      • I myself one time went for a walk with my children and aunty. A block and a half away from my house is the train tracks. I knew I wasn’t feeling good before we left, but my aunty in her I acknowledging ignorance pushed me to go with them. So I did. Just as we were going threw the track I dropped and had a seizure. DARN GOOD THING A TRAIN WASN’T COMING!! But it sure made her think for future occasions when I knew I couldn’t do as others wanted. Some aren’t so lucky and that’s where we come in!! Because they have to have a voice as well for them when their not feeling supported directly or indirectly.


        Comment by Kathy S.B — January 19, 2020 @ 11:21 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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