A sad truth: Standard care of psychogenic non epileptic seizures in the US is deficient and how to make this better

tree and seed for blogThere are three major weaknesses in the standard care of PNES:

1) It takes on average 7 years to correctly diagnose the condition;

2) Psychiatry and psychology are woefully ignorant about psychogenic non epileptic seizures (PNES) and unprepared to treat despite PNES being a psychological condition;

3) Although inpatient epilepsy monitoring centers throughout the US evaluate and diagnose up to 20-30% of their inpatients with PNES, most centers do not have mental health professionals on their team and too often patients are discharged without even an appropriate mental health referral off-site.

I am going to address point 3 because point 2 has already been very well covered by Dr. Selim Benbadis in a recent article (can be found on my website).

The topic for today’s blog post stems from my frustration with how the system is currently working (or not working). Every week I receive request from patients with non-epileptic seizures asking me to help them find mental health providers.  However, these requests come from across the US.  I work in New York and New Jersey and don’t know providers in all states.  Typically, I suggest the patient speak to the doctor who diagnosed them and obtain a specific local referral.  Almost invariably I hear back that none could be provided by the doctor.

How is it possible that centers where such high numbers of PNES are diagnosed on a regular basis do not provide an appropriate referral to their patients? 

Instead, routinely patients are instructed upon discharge to “seek psychiatric treatment.”  However, we all know that finding psychiatric and psychological treatment on your own when you have a diagnosis of PNES can be as challenging as climbing Mount Everest.

If this is the standard of care being provided to patients with PNES it is abysmal.  There are a number of steps epilepsy centers in the US and neurologists who routinely encounter PNES should immediately take.   To begin with, there is an excellent resource that can be contacted: the PNES Task Force at the American Epilepsy Society.  Another step is to take the time to research your local mental health resources, establish a working relationship with these resources and if necessary conduct an in-service to educate about PNES.  This will require legwork but is the responsible and right thing to do for our patients diagnosed with psychogenic non epileptic seizures. If we work conscientiously on this, we can grow a strong system from a small seed (as in the post’s picture).


7 thoughts on “A sad truth: Standard care of psychogenic non epileptic seizures in the US is deficient and how to make this better”

  1. Excellent post! PNES is a tough diagnosis to give and to receive. I originally thought that I would finish grad school and work in counseling, helping neuro patients, but now see a huge need to help patients with psychogenic events. I pursued a cert in electroneurodiagnostics in addition to my psy degree and have really benefited from this insider perspective of these events. Even skilled neurologists have trouble distinguishing PNE events based solely on semiology, so patients are greatly harmed by family practice doctors who listen to a description of the events and prescribe AEDs. In every EMU that I have worked, a full neuropsyche eval was included in the assessment, and patients then consulted with social workers to help them find appropriate care. Many epileptologists and neuropsychologists are also working hard to change the terminology of PNES – taking the word “seizure” out of the description because the term confuses patients (and their subsequent practitioners) endlessly.

  2. I was advised to MOVE from Jersey to large university well known medical school because 2yrs “cycling” different meds got no control. Well 5 yrs in still no control. Believe they are psychogenic. Now and BACK then but first onset was age 39 approx 6 mos after car crash.
    Can not tell side effects of drugs from seizure disorder. Current neuro given up, won’t work with psych. or general practitioner. Just as God’s “gift” already had been prescribed benzo for 15 yrs prior. Now every new doc thinks these psychogenic seizures are drug seeking behavior. Chicken, egg?

  3. When I think of what I’ve gone through and simultaneously put up with over the last year and change I get angry. Finding care givers that actually care was the first challenge. The standard response when confronted by a condition that you don’t understand in this country must be to pretend superiority — you’re sick, I’m a doctor so I must be better than you somehow. Then pass along a huge bill. When I actually discovered someone who has some idea of how to help, let alone treat another human being, I’d already lost pretty much everything, putting treatment just out of reach.

    Lesson learned: don’t get sick in the US. Your insurance won’t pay. Your job will make it difficult and eventually cut you loose. Your care givers may be too sexy for your treatment. And you’re unlikely to have that much cash on hand — ever.

  4. my daughter was diagnosis with “pseudo-seizures “finding out it may be pnes she was released with no follow up care and treated as if she could control it we need more studies and help on this disorder it is very damaging to both the patient ,in my daughter case falling where she stands ,and to the families emotional stress ,watching this over and over day after day WE NEED MORE DONE ABOUT PNES

    1. That is so true Gary. I have PNES and the Doctor who this post talks about did me that way. You have PNES and here is a booklet and released me from the hospital. What a Doctor! When I asked him who to see he informed me he did not know. Look in a phone book. I have looked around facebook and in Austria they have better care for this then we do. What does that say for us.

  5. My now 26 yr. old daughter, was diagnosed with this. It took 4 nuero guy’s & 2 Physiatrist. The last nuero man is the one who finally said lets go to the UIC and visit. They have studied her & evaluated and have agreed with nuero guy..
    Then a yr. ago with all of the stigma of “YOUR FAKING THEM” she overdosed, she has finally found the most wonderful Pyhc. Dr. and he and the Neuro guy work hand in hand. She is now after the last yr. she is now within the last 6 months only had 3 of these attacks. We no longer use the term “Seizure” for them because they are attacks. So the community now needs to be educated of PNES.
    Especially ER’s & Paramedics whom we have had the most trouble with. She from time to time will need to be transported but she has numerous other health issues. But she was so bad that they where happening 4 to 5 x’s a wk.
    So Bravo to our Team of DR.s who have had a big part in retuning to some sort of normalcy. Life is turning around for her with this condition. Don’t get me wrong she from time to time knows this will happen, but its everyones reaction to it that will keep it under control..

  6. I hate when I get a 5-15 second warning of intense heat & sensations in my body that start in my stomach, speed to my feet & then a shocking feeling of what feels like electricity shooting in my brain that forces my lights out of consciousness. I am powerlessly unaware that I am even alive and nothing exists nor do I ever know what happens when those aura things occurs to me. Until, I lethargically come back to consciouness when this happens. I might as well be dead when it does. I am powerless to stop it & then whenever I do awaken anywhere from 15-45 minutes after this shock of what I call “auras.” I gain semi-consciousness to taste the blood on my tongue from being have bitten it I feel the uncontrollable urgeto sleep cause my body and bones hurt so bad from convulsing against my will and then the embarassment of the occassional cold, damp reality that occurs from this rude awakening that I have urinated on myself. It is hard to accept each time these things happen to me & that I can not stop them or medically be determined why. All I know is that I have these unconscious & uncontrollable body and muscle involuntary jerks that I can not stop & might as well be dead ’cause it’s literally lights out to life for me when they happen but to doctor unless they can force or provoke me to have one while hooked up to machines- they are not seizures. These things use to only occur while sleeping or when waking up when they first occurred. Then they occurred with no “aura” warning & just the convulsion & now I get what I call my 5-15 second blessing that has helped increased my chances to make it to the ground safely before I am thrust by gravity against my will. Yeah – anyone can call it seizures -auras – grand mal seizures – generalized tonic clonic or PNES or what ever else name you want. But until you feel that coming on & know you only a few seconds to “stop-drop & hope you have enough seconds to get safety on your side” before it occurs…& pray you live to regain life on the other side of it…then you can call it what you want too or hook whatever tests to my brain & body to confirm what it is. But until then, these are against my will or my conscience ability to intervene to stop it & the hours & days I lose after the fact to rest back physically and even visually from it and ease the headaches that follow – I call it being a hostage in my own body and brain that I can not stop nor medication can ease & stop & my faith in doctors at this point is void now due to so much debt with no relief & if anything all they do is add more complex overload on me than the symptoms I already have~ My husband and daughter have witnessed these “events” in me that have been medically classified as PNES due to a 3 day stay in an Epilepsy Monitoring Unit that captured no EEG abnormalities nor a seizure or fit . But I am still PNES according to them. I revealed I had PTSD and was a child abuse survivor & was immediately was speculated and confirmed by their incompetent staff that I had PNES. I requested my medical records for my own personal compilation as I do this now so I get the written proof of their findings that they do not tell a patient verbally. I was told verbally to seek “Psychological help – drive & do all normal activities as before”& given permission to leave on my own request ’cause I just couldn’t stand it there any longer. But in their written documentation of records – they stated “difficult case to diagnose and their findings was PNES was based on their test and patient’s personal history. I was not to drive, limit my activities and seek psychological help.”~ So when doctors can not even get on the same page of communication -research -education and eefective treaments and be honest with their patients in print document as they do when speaking verbally; what hope do any of us have. I have never trusted doctors and only literally sought any when it was life or death for me & even now – I stand by this. I would rather tolerate my symptoms come what may & cope constructively & research safely on my own knowing my symptoms than to have a doctor to tell me what they feel they know about me better than I do. I’d rather spend what little money I have to get the Internet for my own healthy coping skills, new researches or finding support groups & survivors stories that give me strength to continue on. I have never been committed in a psyche ward – attempted to commit suicide to kill myself or harm myself and the last place I ever truly need to be is in a hospital or in a lab paying for tests I can not afford with results that are never conclusive and this works for me safely and to every one around me. I have never been on prescription medications for my conditions and now thanks to Dilantin & Keppra that I took when they thought I had Epilepsy but now am PNES — I will never take or try another presciption medication again. I have never tasted metal in my mouth so pronounced that I could almost smell it likewith such a salivating mouth that wanted to eat a barrell of a gun so bad like I did when suffering sucidal depressing thoughts accelerated in me because of Keppra. I’ll never trust medication again because of the harsh sides of these seizure medication. It’s sad that even as patients whether it is medical or mental health issues there is not enough scientific data to go around to help us all but yet we all are seeking answers and no one in the medical field wants to work as a team to make medical answers possible and patients are left with more grief than easing of symptoms anyways. Do the best you can and do not be afraid to try to find your answers and stand up medically and mentally for yourself too. If we do not care enough about our self to trust our own medical intutions of our symptoms…we can not trust anyone else to help us either and if we do seek help; you better believe you have a right to use discretion. We only live once and no matter the diagnosis they give us- it is still our choice of what we do or do not do to seek and to help ourselves~

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