Epilepsy Talk

Prison Abuse | January 25, 2010

This is a story of a staggering atrocity that a woman seeking help, wrote to me here.

Here is her story:

“My 24 year old son began having grand mal seizures about nine years ago. Until 5 and a half years ago they were very far apart, and his doctor’s recommended not to medicate him, explaining that the seizures may disappear completely as he ages as mysteriously as they began.

Then something horrible happened. He was charged with a crime he did not commit (which although his attorney compiled evidence clearing him, he was frightened into taking a plea bargain for 10 years in prison the night before he was to enter the not guilty plea).

The problem with his epilepsy was that on the actual night of his arrest, the officers interrogating him (who did not like his answers because they did not fit their theory of the crime) forced him to stand up for 12 hours straight without food or water in hopes of ‘cracking’ him.

The result of this was that he fell into a grand mal seizure in which he did not breathe for 10 minutes, and received a concussion. Instead of getting medical help, he was tossed in a cell and left to recover on his own.

This was to change the severity and frequency of his seizures permanently. It is also probably related to the prosecutor’s ability to manipulate him into a plea bargain months later which would never have stood if the case had been heard by a judge or jury.

My son has already served over half of his sentence, and has been brought back to life dozens of times by prison EMTs. He has been on lethal doses of Tegretol, Dilantin, and now Dilantin and Lamictal (300 mg & 400 mg per day each, respectively). I never know if my phone conversations with him will be my last.

My question is this, when the current dosage levels of these drugs quit working, and they will, is there any other medication being tested now that would be worth the risks, and have they found any effective substances for epileptics that do not cause Steven’s-Johnson Syndrome?

Right now my son’s seizures come in 3’s, and always deprive him of oxygen and often cause injuries that in themselves are life threatening. Can you give me info on where I can find out about cutting-edge research on S-J syndrome and medications, including human studies being conducted? Is there anything known that might help keep him from getting Steven’s-Johnson?”

I gave her several links, a list of anti epilepsy drugs (AEDS) with their possible side-effects: http://www.webmd.com/epilepsy/medica…treat-seizures

I also included a site that helps give information for prisoners who suffer from epilepsy:

And another website with a table of epilepsy drugs, brand names, average dose, treatment and possible side effects: http://www.epilepsysociety.org.uk/Ab…gsusedinadults

I also urged her to call her local State Representative and Congressman. If anybody can help her or think of any other  recourse, please reply.

Many, many thanks.

Phylis Feiner Johnson

Another article of interest:

Medical Ethics Have Been Violated at Detention Sites, a New Report Says


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  1. Phylis,
    It has to be heart breaking for a mother to write the final chapter of her son, sentenced to death because of his epileptic seizures, by the very hands of “authority”, who swore to protect, serve & uphold the law.
    Just this week, desperately trying to recover from my last grand mal seizure, walking around town, confused, disoriented, dizzy, in deep headache & muscle pain, I noticed myself being followed for days by several undercover police agents.
    Irritated with my endless physical pain, their crude presumption & constant shadow, I ended up confronting some & providing them with my epilepsy website.
    Hopefully, they will come to understand my agony & leave me alone to languish in my own misery,
    As for the poor fellow who died in prison, it’s sad to know, the very “authorities’ who swore to protect, serve & save our lives, could be as deadly as the Epileptic seizures we are forced to live with, EVERYDAY!!!
    I hope & pray that the mother gets the justice her son has been denied from, by the very wicked “authorities”, who can NOT “protect & serve” to save her son’s life.

    May his soul rest in peace.


    Comment by Gerrie — February 1, 2010 @ 9:58 AM

  2. Oh no Gerrie…you too? It was brilliant of you to give them your epilepsy website. Now all we have to do is hope that maybe they’ll look at it and LEARN something. Now that would turn tragedy into triumph. Congratulations on your being so pro-active rather than re-active. It’s an act of pure bravery.


    Comment by Phylis Feiner Johnson — February 1, 2010 @ 11:18 AM

  3. Phylis,
    We need more than just bill of rights.
    READ ON WHY,,,,

    The Story Behind The Bill: Rep. Miller finds school discipline too extreme
    The Hill
    A child in Michigan had an epileptic seizure on the first day of school and
    died after school officials sat on him. A school in Tennessee had …


    Comment by Gerrie — February 3, 2010 @ 1:13 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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