Epilepsy Talk

Conversion Disorder and Epilepsy | September 5, 2016

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.

Diagnosis

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.

Prognosis

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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Resources:

http://www.mayoclinic.org/diseases-conditions/conversion-disorder/basics/complications/con-20029533

http://www.forbes.com/sites/alicegwalton/2012/04/16/can-stress-cause-seizures-news-on-conversion-disorder/2/#95ea3f365f13

http://www.drugs.com/health-guide/conversion-disorder-functional-neurological-symptom-disorder.html

http://www.futurity.org/pseudo-epilepsy-is-actually-stress/

https://drbertpitts.com/wp/conversion-disorders-and-pseudo-seizures-the-doctor-says-i-am-not-sick-but-why-do-i-feel-so-bad/

http://jnnp.bmj.com/content/69/3/285.full

https://www.sciencedaily.com/releases/2014/07/140702170028.htm

http://contemporarypediatrics.modernmedicine.com/contemporary-pediatrics/news/neurology-teamwork-and-tact-conversion-disorders?page=full

http://balzertown.com/conversion-disorder/

 


15 Comments »

  1. I have intractable epilepsy. but after I was diagnosed I was told that there were places in my brain that did not develope the way they should have and that this was a possible cause.

    Like

    Comment by Randy — September 5, 2016 @ 2:35 PM

  2. Yes, but that’s true epilepsy, not a conversion disorder. A conversion disorder leans closer to the psychological side.

    Like

    Comment by Phylis Feiner Johnson — September 5, 2016 @ 3:52 PM

  3. Heaven help you if you have a conversion disorder or pnes. “Real” seizures are bad enough! Neurologists & GP’s generally seem extremely reluctant to refer patients for any sort of psychological care. Seizures are extremely traumatic, whether “pseudo” or “actual”. The specialists and/or the EFA should more readily make referrals for treatment for the trauma inherent in having this disorder, otherwise, patients may remain mired in dealing with the difficult task of dealing with stigma, discrimination, loss of freedom, horrible drug side effects, etc, etc. Who wouldn’t be anxious and depressed? Epilepsy (any seizures) will remain in the dark ages until professionals are willing to open them up to therapy, counseling, discussion. Otherwise, the worldwide stigma will remain.

    Like

    Comment by Susan — September 7, 2016 @ 11:14 PM

  4. I agree completely, Susan. The only thing that will help with PNES and Conversion Disorder is therapy.

    The problem is that while PNES is often discernable, Conversion Disorder often goes undiagnosed or “missed”.

    But whichever the disorders, psychiatric help is in order.

    Like

    Comment by Phylis Feiner Johnson — September 8, 2016 @ 9:17 AM

  5. I was told this I had a conversion disorder but did not understand it. My stress was high in school and my parents wanted me out of the University. Whenever I had finals I would have seizures. My Professor said in one of my classes I think you have a conversation disorder. None of of my doctors said this. Thanks for your explanation. Stress was my cause.

    Like

    Comment by red2robi — November 29, 2016 @ 9:17 AM

  6. I’m glad you were able to define it and discover the cause.

    Were you able to finish University?

    Like

    Comment by Phylis Feiner Johnson — November 29, 2016 @ 9:21 AM

    • No, my seizures got out of control and had Status Epilepticus. My Neurologist felt that surgery was the only way for me to live. I tried to go back to school but my recall was bad. I had second surgery and abnormality still was evident. The MRI was indicated my birth defect but it was deep on ventricle. My EEG was abnormal too. I always blamed myself.

      Like

      Comment by red2robi — November 29, 2016 @ 10:42 AM

  7. Oh Red, why in the world would you blame yourself?

    You can’t help what happened, neither can you ignore a crippling condition. Especially a birth defect.

    Be a little less harsh on yourself, Red. 😦

    Like

    Comment by Phylis Feiner Johnson — November 29, 2016 @ 11:23 AM

  8. Writing on behalf of my adult son diagnosed with epilepsy as an infant, per EEG testing & obvious grand mal seizures aka ‘tonic clonic’ seizures. There are other challenges: Learning disabilities, Panic Disorder and Anxiety. for 10 years he has been on Social Security Disability Insurance (SSDI). His grand mal seizures were under control even when his SSDI case came up before the judge but it was his loss of consciousness, attributed to ‘partial’ seizures, or what I call ‘zoning out’ — diagnosed by 3 different neurologists in 3 different offices–that ultimately qualified him for SSDI. To this day his EEG tests show abnormal/seizure activity. A few weeks ago his current neurologist wondered out loud if maybe son’s loss of consciousness (‘zoning out’ for 90 seconds or more) is actually because of a conversion disorder. He recommends that son see a neuropsychologist. But Medicare/SSDI won’t pay for a neuropsychologist and we are people of limited means. (My son’s $ 880 monthly ck certainly isn’t going to pay for such a visit + subsequent testing) This is causing great stress for my son and for us, his parents. The neurologist — infrequently seen by my son since the doc used to say son’s condition would remain unchanged–already told us that the solution will be for cognitive behavior therapy with a focus on EMDR (eye movement desensitization and reprocessing) all of which my son has also done for 10 years before coming to this neurologist. PS: my fear is that when son comes up again for his 3 year review, which will be this year, 2017 –that the neurologist will stone wall until we go into debt for the neuropsychologist testing.

    Like

    Comment by watchingmymind — January 13, 2017 @ 11:43 PM

    • I think if the neuro prescribed and recommended a neuropsychologist HIMSELF, he wouldn’t back out of it when the 2017 review comes along. So your choices are either to follow through or to find a new neuro. (Another opinion on this Conversion Disorder diagnosis certainly wouldn’t hurt.)

      As for funding, I suggest Josh Provides.org.

      It’s financial assistance for those living with epilepsy and other seizure disorders and their families who are in need of help to pay for all or a portion of the expenses they incur for:

      Prescription medication — Medical services — Seizure response dogs — Seizure detection devices — Seizure prediction devices.

      It covers other technologies, methods, and devices which are recommended by the patient’s medical doctor and are not covered by private medical insurance, other reimbursement plans, or government-funded programs, i.e. Medicaid benefits and Medicare benefits (but not insurance premiums).

      Also included are transportation expenses to and from home, school, medical services and employment, through the purchase from or through third parties of gas cards, bus passes, taxi cab cards, or other third-party transit options.

      http://joshprovides.org/services/how-to-apply-for-assistance/

      Like

      Comment by Phylis Feiner Johnson — January 14, 2017 @ 9:58 AM

  9. I write on behalf of my adult son who, since infancy has been diagnosed with seizure activity (based on EEG’s throughout time and on the tonic clonic seizures he used to have before stabilizing on a seizure medication). He has been on SSDI for 10 years. He has complex seizures (aka petit mal) confirmed by 3 different neurologists, in 3 different offices, 10 years ago. Now his neurologist thinks his complex seizures (for which there is no medication) might be caused by conversion disorder. What happens with complex seizures is he zones out, (loses consciousness while still standing). As a result,for example, if he’s in a store it’ll take him 3x as long to finally finish shopping. (He doesn’t drive, thankfully) Will this ultimately affect his SSDI eligibility? His EEG’s still show seizure activity, but yes, that type of seizure (tonic clonic, aka Grand mal) rarely happens as long as he’s on medication. Thanks for listening.

    Like

    Comment by Kz — January 14, 2017 @ 12:15 AM

    • Judging from watchingmymind’s post and my reply above, I think not.

      Please read it, I think it will answer many of your questions.

      I think he will have to go to a neuropsychologist for assessment and treatment.

      Although Medicare/Medicaid covers it, there’s not enough of an allowance to fund all treatment.

      So you might want to apply for help from Josh Provides.org.

      http://joshprovides.org/services/how-to-apply-for-assistance/

      Like

      Comment by Phylis Feiner Johnson — January 14, 2017 @ 10:22 AM

      • Hello Phylis. Thanks so much for your informative response. I’ve printed up the application for Josh Provides organization and will start in on applying. BTW: The same neurologist and son’s internist both recommend a service dog. We have their signed letters talking about the benefit of such a dog for son. He wants to train the dog himself which ‘should’ speed up his getting a helpful companion (To get an already trained one can be a 2-3 years plus $20,000 and up.)

        Like

        Comment by watchingmymind — January 14, 2017 @ 11:32 AM

  10. PS: sorry about my initial post happening twice. I didn’t think the 1st one went thru so I retyped it. :((

    Like

    Comment by watchingmymind — January 14, 2017 @ 11:36 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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