Epilepsy Talk

Conversion Disorder and Epilepsy… | September 10, 2017

What is it?

Is it epilepsy or conversion disorder?

The term “conversion” comes from the idea that psychological distress is being converted into a physical symptom.

The cause is not known.

A long-standing theory has been that a person with conversion disorder must block out the source of the distress — be it a conflict or stress — because it is too unacceptable for the person to remain aware of it.

There is, however, little formal evidence to support this theory.

An estimated 5% to 10% of outpatients receiving treatment for epilepsy and about 20% to 40% of patients hospitalized for intractable epilepsy may be suffering from psychogenic nonepileptic seizures (PNES).

Conversion disorders affect up to 400,000 people in the U.S.

Both neurologists and psychiatrists — emphasize that it is, indeed, a real and debilitating condition but that it is a psychological disorder, not epilepsy. It absolutely does not mean that you are “faking it.”

These symptoms might or might not show up as seizure activity when tested, but the source is different than with epilepsy, so it can’t be treated as such.

Different causes require different treatments, after all.

The good thing about these being non-epileptic seizures is that they don’t cause as much damage to the brain and nervous system as epileptic seizures can.

The bad thing is that we’re awake during them, feeling every bit of pain and/or the stares of people around us as we cause a scene.

It can be different for many people, but imagine if your mind is managing stress by keeping this shield up around you. Bad days can chip away at it, some more than others, but it’s rebuilt as you rest.

What if your mind never gets that rest, whether it’s from psychological trauma (even subconscious) that you’re unable to let go of, or something around you at all times?

That shield will wear thin until every little stressful thing that hits you, like a loud noise or swift change in emotion, can cause such a shock to your mind that it subconsciously short circuits.

It doesn’t know what to do with this overload of anxiety, so it converts it into something physical.

This can resemble the entire body shutting down, though you’re wide awake, or a full body charley horse of twists and spasms.

It could be gradual through the day as twitches or vocal noises. Your knees could wobble and drop right out from under you. You could feel like you’re on a ship at sea. You could go temporarily deaf or blind. The list goes on and on!

It’s up to your mind and how it chooses to deal with it. And you have no conscious control over this.

One thing people with conversion disorder are not: crazy.

While this is considered a mental disorder, we are still completely functional, psychologically.

This is a subconscious issue and we can’t help it.

Many sufferers may have other psychological problems in addition to this, but simply being diagnosed with conversion disorder does not mean you’ve lost any faculties of the mind.

You’re still normal in that sense.


Sometimes additional tests can clarify the diagnosis.

These tests may include an electroencephalogram, which measures electrical activity in the brain, or an electromyogram, which measures how well nerve impulses are being conducted through muscle tissue.

In some cases, particularly if not treated soon enough, conversion disorder symptoms can result in substantial disability, similar to that caused by physical medical conditions.

More severe symptoms, such as paralysis or blindness, also may not last a long time because it is harder to sustain symptoms that interfere significantly with daily activities.

A less severe symptom (such as tremor) or a symptom that is repeated and limited (such as seizure) can continue or come and go, depending on the person’s circumstances.

Expected Duration

The symptoms of conversion disorder usually do not last long.

Generally, the more quickly the symptoms start, the more rapidly they go away.

If the symptoms came about in response to a clearly defined stress, the symptoms are likely to last only a short time.

If symptoms do not improve relatively quickly, more vigorous rehabilitation may be required.

Physical or occupational therapy can be helpful.

A led by a Rhode Island Hospital researcher has found that a cognitive behavior therapy-informed psychotherapy significantly reduces the seizures in patients with psychogenic nonepileptic seizures.

The study led by W. Curt LaFrance Jr., M.D., M.P.H., director of neuropsychiatry and behavioral neurology at Rhode Island Hospital and assistant professor of psychiatry and neurology at Brown University is published in JAMA Psychiatry.


The outlook for conversion disorder varies. It depends on the nature of the stress and on the symptoms.

The person may either learn to deal with the conflict or retreat from the source of distress. In either case, the physical symptoms may stop. Functioning remains a higher priority than insight.

There is no single medication that is best for this disorder. But medication may be helpful for treating an underlying problem with anxiety or depression.


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  1. In. 2012, after being seizure free for 34 years, my mail-away pharmacy called to say my anticonvulsant was going up in price to $3,000. My neurologist switched me to the generic brand but it made me wheeze. She switched me back to Lamictal and then titrated me over to Neurotin. Within 2 weeks of completing the titration schedule, I had 6 Grand Mal seizures and was in the hospital for 3 days. The ER neurologist wrongly entered in my medical record that I had been noncompliant with my Lamictal failing to mention anything about being titrated over to Neurotin. She also stated that my seizures had been nonepileptic. When I asked her to correct my medical record, she made a second entry saying that I had been on Neurotin leaving her original entry!?

    My new neurologist titrated me over to another anticonvulsant and told me Neurotin was like drinking water. However, the anticonvulsant he put me on caused low sodium and he hadn’t checked to see if I was on a low-sodium diet, I was. I had another Grand Mal seizure and had to get an IV of sodium in the ER before they would let me go home. My question to you: nonepileptic or incompetence?


    Comment by Susan Vander Veer — September 10, 2017 @ 2:13 PM

    • Incompetence? That fool. She has a lousy memory and you suffer? And then tells you that you have nonepileptic seizures?

      I would report her for incompetence (or all of them).


      Comment by Phylis Feiner Johnson — September 10, 2017 @ 2:56 PM

      • And after the first series of 6 seizures, I checked the patient summary from my last visit to the neurologist, and the dosage on the summary was 2x more than what the pharmacy had filled. I have the bottle with the incorrect dosage and the summary with the correct dosage. Report to whom? No one will touch this.


        Comment by Susan Vander Veer — September 10, 2017 @ 3:39 PM

      • Hospital administration. Believe me, these things get noticed and sometimes disciplined. Not often, but sometimes.

        Do you have another neuro now? You could report it to him/her.

        If not, here’s a link that could help you find a new doc.

        2017 Patient Recommendations for TOP Neurologists…Epileptologists… Neurosurgeons…and Pediatric Doctors



        Comment by Phylis Feiner Johnson — September 10, 2017 @ 3:45 PM

  2. Hello. I’m not sure if I’m following the thread correctly, so I’ll try to respond. If the medical record error, or any other issue occurred in “2012”, I doubt anyone is going to address it. If the incident happened, typically, within 18 to 24 months of the initial date, someone may take a look and provide some assistance.

    The reason is simply, there is a certain amount of time that is considered reasonable and customary to review such issues. In the health care industry you just can’t have people ‘discovering’ medical data from decades ago and bringing it forth for medical review.
    There are not enough resources.

    The time frame listed above is general, it could be longer or fewer depending on your state. It is typically spelled out in a general medical handbook or on-line.

    With regards to the hospital, you can contact the “Patient Care Advocate”. All hospitals have one and they are there for the best interest of the patients not the hospitals/providers. However, they do work closely together.

    You can also contact the insurance company with your concern. They are not particularly happy when one of its contracted providers is uncooperative with its members. They will do a thorough investigation.

    Lastly, you can go to the medical review board in your state. However, I would caution pursuing this line of action only in extreme cases.

    I hope this helps.


    Comment by Lee — September 10, 2017 @ 8:18 PM

    • Thanks so much for your input and valuable advice. Much appreciated!


      Comment by Phylis Feiner Johnson — September 10, 2017 @ 8:22 PM

    • Thank you for your advice. I did report what happened in 2012 and to many people. It took me a few months to recover, for example relearning certain words, but before the end of 2012, I told many about the situation who should have given me your advice but didn’t. Thank you again.


      Comment by Susan Vander Veer — September 10, 2017 @ 11:25 PM

    • One last thing, it all gets down to who your neurologist is. If she or he is the best of the best, you’ll never get anything changed or find anyone to help. It took me years to learn that valuable lesson. Again, thanks for the advice.


      Comment by Susan Vander Veer — September 11, 2017 @ 12:15 AM

  3. Back to converion disorder and psychogenic nonepileptic seizures (PNES).

    I originally thought that my absence seizures and even the eventual tonic-clonic seizures where psychological, simply a manifestation of the anxiety that anyone with the tiniest bit of consciousness experiences. They weren’t.

    But it some ways the seizures were ‘easier’ to treat, more clearly delineated than if they were of psychological origin.

    I appreciate that Phylis clearly showed that any form of psychological disorder can be as disabling as any physical illness.



    Comment by philamisan — September 11, 2017 @ 6:21 AM

    • I agree. At least if you have epilepsy, you know what you are dealing with.

      The area of the psych is a dark unknown. 😦


      Comment by Phylis Feiner Johnson — September 11, 2017 @ 9:11 AM

  4. Within 2 weeks of completing the titration docket, I had 6 Grand Mal ictuss and was in the hospital for 3 days. I had another Grand Mal ictus and had to go an IV of atomic number 11 in the ER before they would let me go dwelling.


    Comment by arsenios — November 1, 2017 @ 10:48 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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