Epilepsy Talk
Violence and Epilepsy | September 10, 2020
No question about it. Epilepsy’s been the victim of bad press since ancient Greece. There, it was sometimes called the “Herculean Disease” because Hercules was thought to have murdered his family in a fit of uncontrollable rage.
Two thousand years later, Michael Crichton wrote in The Terminal Man, “Epileptics are predisposed to violent, aggressive behavior during their attacks.”
Which didn’t exactly help.
In later editions of his novel, Crichton softened his stance with a postscript, but many physicians and laymen still truly believe that those with epilepsy are dangerous and potentially violent people.
British psychiatrist Henry Maudsley suggested that “whenever a murder occurs, without premeditation…we ought to look carefully for evidence of previous epilepsy.”
In the film “Deceiver,” a psychiatrist describes a person with epilepsy as “one of the most dangerous creatures on earth,” and recommends that police officers treat him as you would treat a strange dog in an alley, “don’t talk to him, don’t look him in the eye, and whatever you do, don’t touch him.”
Lovely. But they’re not the first to have these biased attitudes. (And they’re considered to be educated, “smart” men!)
Two schools of thought…
There’s a long-standing belief that temporal lobe epilepsy (TLE) is the epilepsy syndrome most often complicated by interictal (the time between seizures) cognitive and behavioral problems.
Criminologist Cesare Lombroso promoted the association of epilepsy with aggressive, sociopathic tendencies.
But modern research rejects the idea that having epilepsy makes you automatically prone to violence. However, studies do show increased violence among those with seizures as compared with those without seizures.
An international workshop found that aggressive acts “appeared suddenly, without evidence of planning, lasted an average of 29 seconds and occurred during partial complex seizures.”
They pointed out that the most important aspect to these acts is they were random and that the aggressive action was extremely brief.
Members of the workshop also determined that fear or an attempt at restraining the subject exacerbated these aggressive acts. (Hey, who would want to be pinned down, tied up or put in cuffs?)
They determined, that it would be “a near impossibility” for a person having a seizure to commit a directed act of violence.
While it’s true that compared with the general population, violent behavior occurs more often among those with epilepsy, seizures are most aggressive at the interictal stage, between seizures and can correlate with: frontal lobe deficits, neurotransmitter abnormalities, perinatal neurological damage and behavioral genetics.
Other biological aspects influencing aggressive behavior in epilepsy can be: male gender, psychopathology, low intelligence or cognitive deficits.
Also included are prior head trauma, or abnormal neurological studies, even medication side effects, and possibly the experience of child abuse.
Unfortunately, the interictal period comprises more than 99% of most patients’ lives, making this a continuing problem even though the seizures themselves are intermittent.
Clinicians need to be aware of the different relationships between epilepsy and violence, especially when choosing management with anticonvulsant medications, psychoactive drugs, or in some cases, surgery.
Because, the effectiveness of one may defeat the other.
So, it’s a real double bind.
And then there’s the debate of pre-existing psychosis versus psychosis being a by-product of seizures.
I don’t think anyone is going to win that debate, because each situation is entirely possible.
While “automatic” aggression is higher in those with epilepsy, the incidence and prevalence of psychosis and aggression in epilepsy, are still unknown.
The question is: what’s triggering what?
Besides, that kind of aggression isn’t really any different from the violent behavior of other patients who experience psychotic episodes because of other illnesses.
It’s not simply a matter of “A” (partial complex seizures) + “B” (the interictal stage) = “C” (aggressive acts and violence.)
You can have epilepsy and not be psychotic. And you can be psychotic and not have epilepsy. What’s so difficult about that?
But old biases die hard. And we still have a long way to go to prove to people who those with epilepsy aren’t crazy, aggressive or violent.
Only through education and awareness can we change those odious opinions.
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Resources:
http://jamanetwork.com/journals/jama/article-abstract/336801
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3053027/
http://www.epilepsy.com/learn/impact/moods-and-behavior/mood-and-behavior-101/aggression
http://www.neurology.org/content/73/21/1720.extract
http://www.sciencedirect.com/science/article/pii/S2213323213000224
http://io9.gizmodo.com/was-michael-crichton-right-about-a-link-between-epileps-509012575
http://aibolita.com/nervous-diseases/2436-epilepsy-and-aggression.html
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Epilepsy Talk 
Michael Crichton has a lot to answer for.
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Comment by HoDo — September 10, 2020 @ 10:58 AM
Son age 46 has had nocturnal seizures since age 12. He has worked in the produce dept of the grocery store for 3 years, handling knives to cut up fruits and veggies, with no incidence of violence. His med, depakote, and CBD oil control the nighttime seizures. The only time he was ‘violent’ was in a post-ictal episode many years ago before he restarted an aed. Keppra would cause some anger or grumpiness, but that has been removed because it lowered his sodium level too much.
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Comment by Bessie — September 10, 2020 @ 11:03 AM
It’s not uncommon to be violent in the post-ictal stage.
And keppra just makes the problem worse.
Good news for everyone that he’s off it.
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Comment by Phylis Feiner Johnson — September 10, 2020 @ 1:24 PM
You bet, HoDo. 😦
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Comment by Phylis Feiner Johnson — September 10, 2020 @ 1:20 PM
Wow I had no idea. Learn something new everyday.
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Comment by Hetty Eliot — September 11, 2020 @ 12:17 AM
I have focal seizures with varying levels of awareness, I can still act but not understand the world, people have panicked me and I fight like a tiger, but it’s the fault of those witnesses who don’t know about epilepsy and force themselves on you, to restrain you
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Comment by Gail Barry — September 11, 2020 @ 3:17 AM
It’s unfortunate that virtually no one seems to know or understand the post-ictal stage and mistakes it with drug use, psychosis and violence. For that reason, many like Gerrie have been incarcerated and dragged to the hospital only to be chained to a hospital bed. The horrors are unspeakable.
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Comment by Phylis Feiner Johnson — September 11, 2020 @ 9:44 AM
Human Rights Watch has a project called “Break the Chains” to stop people from being chained for mental health issues.
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Comment by HoDo — October 16, 2020 @ 11:54 AM
Why do I feel I have been here before?
Yes, you’re right Phylis, I’ve been handcuffed to Ambulance & hospital bed while I’m having seizures until my friends came to my rescue & accused the hospital of medical malpractice.
Having livid through this nightmare, I wonder how many millions of voiceless & helpless innocent victims of epilepsy & other medical hardships are being tormented to death by the hospital industry.
Furthermore, the BAY AREA NEWS GROUP research data finding out that many of the victims being shot & killed by the Police in the last ten years were having mental episodes related to their epileptic or psychological disorder, I consider myself to be lucky to stay alive to write about my experience.
For centuries, society failing to decipher the mistry behind Epilepsy has been instrumental in condemning the victims of epilepsy for being “possessed by demons”, therefore subjected to abusive & aggressive maltreatment may have been provoking the victims of seizures to react in aggressive way which has been described to me as “OUT OF BODY” episodes in Epilepsy Foundation group meetings.
Therefore being products of our environment, Epilepsy can not be the cause for aggressions & violent character more than the general make up our conflicting society.
Gerrie
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Comment by Gerrie — September 11, 2020 @ 5:56 PM
And we are lucky to have you with us, Gerrie. We learn good stuff from you. Many thanks.
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Comment by HoDo — September 11, 2020 @ 7:50 PM
HoDo,
Epilepsy making radical changes to the healthy lifestyle I took for granted all those good old days, there was times I questioned myself many time before if life is worth it to keep living like this, getting knocked out & waiting to get knocked out by seizures & putting up with all the consequences & heavy price my family & friends made to pay for of the medical hardship I never neither they asked for.
Fortunately, sharing your resilience & support has made me more stronger to carry on my heavy cross to fight the adversity for another day, I’ve learned to overcome 20 years of seizures.
Thank you for your support & many compassionate good people like you, I could never have made it this far without all of you. 💓!
Gerrie
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Comment by Gerrie — September 11, 2020 @ 8:48 PM
And Gerrie, we couldn’t make it without you!
Your sensitivity, insights, intelligence, experiences and compassion make Epilepsy Talk a better place to be.
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Comment by Phylis Feiner Johnson — September 11, 2020 @ 8:54 PM
❤️ back at you. You, like the rest of us, are infinitely valuable, and worth the effort.
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Comment by HoDo — September 12, 2020 @ 8:06 AM
I would like to share my own experiences. After suffering from a spell of psychosis brought on by the after effects of drugs, and also depression, and suicidal thoughts, caused by multiple seizures(grand mal), then is it any wonder that people with epilepsy feel either frustration or be prone to suffer from brief spells of violence? The after effects of seizures may be both distressing and traumatic-both personally, and for family; also the stress from auras including bone clenching and teeth grinding, are just not fully explored or explained by professionals.
I have found tai chi to be a wonderful tool. It has helped with breathing, relaxation, and especially the teeth grinding. I would recommend it to anyone. We should be sharing how to relax in this forum as much as possible. Stress is both a terrible weapon and trigger.
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Comment by llanarth Smolensky — September 12, 2020 @ 8:39 AM
WOW! What suffering. But you found a way to the other side of the tunnel.
Congratulations. And thank you for your input about tai chi.
With all the stress that we endure, it is important and significant to have another tool to help us.
Thanks again!
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Comment by Phylis Feiner Johnson — September 12, 2020 @ 9:45 AM
Thank you for such as wonderful blog. I have such a great life, I don’t think for one minute of any suffering. But our lives can (and do) take sudden and unexpected turns for the worse, and we must be aware of this. And have the strength to fight against it to come out the other side.
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Comment by llanarth Smolensky — September 12, 2020 @ 12:40 PM
You obviously do have the strength and perseverance. I applaud you and think we can all learn a lesson from you.
Thank you.
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Comment by Phylis Feiner Johnson — September 12, 2020 @ 12:51 PM
Hi, Thank you for this article. I’m not new to your blog: my wife and I have been reading your educational advice for years and we’ve learned so much.
Kim, my wife, has had 2 brain tumors and the old school craniotomies to remove them. They were found early because she had a seizure which caused doctors to do a spinal tap and MRI. Before the surgery she had daily seizures. She was sent to the ER almost every day- the month before her first surgery.
She was told she was simply psychotic and did not have epilepsy or a brain tumor-( this was from the mouth of a security guard at Methodist Central). It took a month before the ER docs took her seriously and even read the MRI which showed the tumors. There were some tears and apologies upon reading the MRI. She was not psychotic and fighting a diagnosis of this along with old stereotypical thinking about Epilepsy was the biggest obstacle to getting her treated.
During that month she was put on mood stabilizers, , anti- depressants, anti psychotics- they were not treating her for epilepsy or a brain tumor.
Once she was diagnosed with a pineal glioma, a pituitary tumor as well a epilepsy, she began to have a better quality of care. Doctors who previously ignored her began to take her seriously. She got the red carpet treatment after that!
She is not violent, she is not psychotic, she is not a threat. She is kind, warm hearted and she is knowledgeable. She seeks the love and respect of children, animals and me- lucky me! She is one of the most empathetic people I know and her heart is big. It is hurtful to hear others have had the same misunderstandings. I really hoped we were alone on that. We see many do not respond to Keppra, Trileptal or some of the newer AED’s. Some do well. What works for her is not what will work for others. We understand that.
We’d just like to offer our 2 cents on epileptics being labeled and discriminated against.
After her brain surgery, the surgeon referred us to a great neurologist who has since retired. She was referred to his replacement and Dr. Replacement wanted to change all of her meds at once- even though she was doing well and had been seizure free for over
a year at the time of the visit. He changed her old meds for newer meds. We discovered new AED’s and the awful side effects they can cause.
Then came Keppra… we had a neurologist who specialized in Epilepsy tell us that Keppra cases no side effects and any symptoms she experienced were a result of possible mental illness- He told her to go to a shrink. She did. The shrink told her to get a new neurologist- she did. This woman understands and does not insist she take Keppra or anything else she’s uncomfortable with.
We’ve had Kim on a healing diet of organic veggies and fruits and whole grains ( no gluten, no dairy lots of healthy oils) and lots of rest as well and she’s been seizure free for 8 months. This is the longest period of rest I’ve known her brain to have since 2001.
In 2009 she was visiting family and an ambulance was called when she had a seizure. She was alert by the time of the paramedics arrival- ( I’m told- I wasn’t there for this one). They started an IV and gave her something they referred to as a, ” Keppra Bomb.” It’s 3-4 times the baseline amount suggested to stop seizures. This knocked her out and she awoke in restraints. She will not visit family without me anymore.
Kim doesn’t travel on her own anymore. She’s grateful to be a survivor and if her story can help anyone in any way she’s happy to share information.
Thank you, Phyllis
James M
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Comment by James Duckworth — September 13, 2020 @ 8:33 AM
James, I’m speechless. But the Keppra bomb was surely the wrong choice. When I was in status I was given Phenobarbitol. There are oodles of other rescue drugs that exist.
In Case of Emergency — New Solutions
https://epilepsytalk.com/2020/07/10/in-case-of-emergency-new-solutions/
And what people say about Keppra, is downright scary.
Keppra — What People Are Saying
https://epilepsytalk.com/2020/05/21/keppra-what-people-are-saying/
But I know I’m preaching to the choir. The damage is done.
I’m happy, as I’m sure you are, that she survived this ordeal. But she paid a high price to live. And not as she was meant to.
Thank you for sharing your story and the outcomes that are possible with ignorant paramedics.
I always tell people to use an ambulance as a last resort. Because they can do more harm than help. But you weren’t there, so it was out of your hands. And 20/20 hindsight will hardly help.
I’m so very sorry James.
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Comment by Phylis Feiner Johnson — September 13, 2020 @ 12:25 PM
Thank you, Phyllis. We knew we couldn’t be alone on this.
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Comment by James Duckworth — September 16, 2020 @ 6:57 AM
Wowee James, what an episode for you to relate. It is truly shocking to read.
It is unfortunate that your wife ( along with yourself ) have had to endure such shockingly shabby treatment from persons who are, supposedly, trained to be able to deal with the situation that they were presented with. My reading of the situation is that they were ” merely following the appropiate protocols as cited in their training manual ” and as long as all the right boxes were ticked they would be happy-mainly because their asses would be covered if any questions were to arise with regards to the manner of the ” treatment ” that they had ” administered “.
Of course all the preceding text may well be viewed as being tinged with cynicism…which is true. I speak from bitter experience.
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Comment by maxwell1957 — September 13, 2020 @ 12:59 PM
Thank you. I agree. We need more education and that’s why we read this blog. We get so much help here that makes our lives and others’ much easier.
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Comment by James Duckworth — September 16, 2020 @ 7:00 AM
Of course we’re cynical. Yes, violence does occur from seizures, med side-effects and untreated psychological problems. Many can and many can’t be controlled. However, violence also occurs in reaction to these same people from our police force and local community. Their adverse behavior can be reduced by providing more education about seizures and mental illness to them.
case in point from past EFA support group members:
a (person of color) had TC on subway and cops came on board and dragged him off thinking he was “crazy scary druggy.” Another women had TC on street, was raped, people thought she “must be messed up prostitute”. Both were on their way to work. Words were from witnesses.
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Comment by skolly9 — September 13, 2020 @ 6:46 PM
Who’s at Fault? https://epilepsytalk.com/2019/04/13/whos-at-fault/
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.
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Comment by Phylis Feiner Johnson — September 13, 2020 @ 7:48 PM
I was just having an email conversation with a health professional – NOT one of my providers, thankfully – who referred to epilepsy as a mental illness. We have our advocacy work cut out for us.
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Comment by HoDo — September 14, 2020 @ 11:16 AM
This is so true, Phylis! I remember when I was in the hospital once having neurological testing. They were weaning off of my medications to see which ones were helpful/not helpful. You know I have TLE. So I had a really bad grand mal. Unfortunately, the nurse tried to strap me down, and I ended up punching her! You know my personality, and that I never would consciously do that. When I came out of it, some of the staff were really upset, but she was really cool. “Happens all the time,” she said.
In that situation, I was glad I was understood. But there are so many times when I haven’t been. And of course, I haven’t been able to communicate. And no one – not even the EMTs – thinks to look at the Medic Alert bracelet! One person asked me if I was homeless! I had been studying for my second Master’s degree. Do we all have to be stigmatized as insane or homeless before we matter in modern society?
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Comment by Mary Ellen Gambon — September 13, 2020 @ 9:38 PM
Yes, you were lucky to have an “understanding” nurse and not Nurse Ratchett. Although I can’t personally imagine you hauling off and punching someone. 🙂
However, as you know, in different circumstances, your goose would have been cooked. Those eager beaver EMTs don’t see, care or understand your Medic Alert bracelet.
From what other people here have said, I don’t even think if you had “EPILEPSY” tattooed on your forehead that it would help.
People don’t know what to do or how to do it as you and I saw in NYC, first hand.
And the violence is often exhibited by the very people that are supposed to “save” us.
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Comment by Phylis Feiner Johnson — September 13, 2020 @ 10:15 PM
It is so true. I have been patronized in the emergency room and by police. My friend told me that, when she rescued me on her floor when I was in status epilepticus, a firefighter had assumed I had a stroke. She had to explain my condition. Thank God I was in her home and she found me, or my goose really would have been cooked. Someday we will have equity, I hope.
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Comment by Mary Ellen Gambon — September 13, 2020 @ 10:47 PM
Patronized by ER workers. Oh yes, Mary Ellen. Many times. What’s worse, though, is being patronized by those who really should know better: Neurologists. I, and I’m sure, you and many others, could site many, many accounts of being treated like our feelings don’t count.
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Comment by skolly9 — September 13, 2020 @ 11:08 PM
Or that our conditions are minimal.
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Comment by Phylis Feiner Johnson — September 14, 2020 @ 11:28 AM
You all might be interested in Safe States Alliance, http://www.safestates.org, a group dedicated to the prevention of violence. An email from one of their members just popped into my mailbox, as if summoned by this discussion.
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Comment by HoDo — September 14, 2020 @ 12:31 PM
And it’s for public health. https://www.safestates.org/page/MissionHistory
I think you found a winner. Can you forward the email to me? pfj@pfjohnson.com
Thanks!
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Comment by Phylis Feiner Johnson — September 14, 2020 @ 2:13 PM