What are a lot of epilepsy centers in the US doing for their patients once they diagnose them with psychogenic non-epileptic seizures (PNES)?

Surprised little girl with hands touching her face isolated on white background This won’t be a surprise to many patients who have been diagnosed with PNES but some of you may be astonished to read:  Very little if anything.

Psychogenic non-epileptic seizures can go misdiagnosed for an average of 7.2 years.1

In an attempt to remedy this devastating delay, the National Association of Epilepsy Centers-NAEC has established the following guidelines:

a) When a patients seizures have not been brought under control after 3 months of care by a primary care provider (family physician, pediatrician), further neurologic intervention by a neurologist, or an epilepsy center is appropriate.

b) If seizures have not been brought under control after 12 months while being treated by a general neurologist, a referral to a specialized epilepsy center/epileptologist should be made.

Since there are over 200 NAEC certified Level 3 and 4 epilepsy centers in the US patients should have minimal difficulty accessing one or more diagnostic centers where they can finally be correctly diagnosed.

Super! Following these guidelines, we should see a big improvement in the time that elapses from that first seizure to the time that the patient receives a proper diagnosis and stops being treated incorrectly for an illness they don’t have (epilepsy)!

Next, with the correct diagnosis, the patient is swiftly referred to the correct treatment, to the proper health professionals, and on his/her way to getting better: right?

Wrong.  Most patients are given the diagnosis of “PNES” and sent on their merry way without any additional guidance other than being advised to “seek psychological help.”  This is because most epilepsy centers do not have a dedicated PNES treatment program, psychiatric/psychological staff who provide treatment for PNES, and a lot have not even identified external referral sources to which patients can be sent.

Now wait a minute, could it be that those epilepsy centers don’t have these resources set up and haven’t collected a single external provider name (psychiatrist, psychologist, psychotherapist) for patients with PNES because PNES is so infrequently encountered by them?  Perhaps PNES is a rare occurrence?

Actually, about one third of the patients seen at one of these higher level epilepsy centers are diagnosed with PNES!  Just to mention one study by Martin et al (2003), of 1,590 patients, 514 (32.3%) were diagnosed with PNES.

Woah!  So, about one third of the patients seen at these centers are diagnosed with PNES but the work of the epilepsy center begins and ends with just giving them a name, a diagnosis.  Patients aren’t provided with a proper referral?

Message to these centers:

If one third of your patients are suffering from psychogenic non-epileptic seizures disorder, it is your responsibility to be diligent health professionals and figure out how you can help your patients find treatment.  If it is hard for you as a health professional to find a mental health professional or clinic that treats PNES, imagine how hard it is for your patients who are additionally saddled by a number of health issues.  It is simply not enough to give someone a diagnosis.

1Reuber M, Fernandez G, Bauer J, Helmstaedter C, Elger C. Diagnostic delay in psychogenic nonepileptic seizures. Neurology. 2002;58(3):493-5.

2Martin R, Burneo JG, Prasad A, Powell T, Faught E, Knowlton R, Mendez M, Kuzniecky R. Frequency of epilepsy in patients with psychogenic seizures monitored by video-EEG. Neurology. 2003 Dec 23;61(12):1791-2.

6 thoughts on “What are a lot of epilepsy centers in the US doing for their patients once they diagnose them with psychogenic non-epileptic seizures (PNES)?”

  1. I have never been confirmed for PNES, but I was evaluated for seizures multiple times with no signs of epilepsy or any other neurological abnormality. I seem to always get a “seizure” when I’m under some anesthesia, but I’m given a sedative. When I wake up i cannot recall anything and I get discharged as if nothing happened.

  2. One thing is it requires 72 hours officially and a lot are try to cut them short. The other thing is the standards for PNES changed in 2011 and a lot are using it as a short cut and not checking for Organic causes which is malpractice. I had this happen to me and because of my long history with Epilisy and ADHD mixed with an engineering degree I was able to get the lazy doctor by the collar and made his diagnosis get reversed. However many people can’t, the sad fact is you have to push for a full 72 hour to check for simple and temporal seizures and lie if you have and history of abuse or they play the PNES card. See a psychiatrist not just a psychologist to test for the Beck Depression Inventory II and full IQ test.If your psychiatrist not theirs get a low score on the Beck part it’s low probability that you have PNES no matter your history. Hope that helps work the system until they get that costly short cut fixed. Good luck, if it weren’t for having wonderful doctors prior I would be up a creek with out a paddle.

    1. Hi, thank you for your comment. Just a few comments: psychologists are the ones who administer IQ tests. Regardless, an IQ test does not really contribute in any way to making a diagnosis of PNES or epilepsy for that matter. The Beck is self-administered and can be scored by psychologists, psychiatrists and other professionals. Again, having a high or low score on the Beck Depression Inventory does not contribute in any decisive way to the diagnosis of epilepsy or PNES.
      I also would not advise patients to “lie” about their history to their doctors and health providers. It is well known that persons living with epilepsy can also have trauma and abuse, just as many in the general population also have traumatic histories. The treatment team can treat epilepsy and at the same time help finding a referral to treat the psychological trauma. Trauma has the potential to be very harmful and does respond to a number of treatments. One last thing to remember, there are an estimated 10-20% of patients who present with a dual diagnosis of PNES and epilepsy. Each condition requires a different treatment approach.
      Glad to hear that you found good doctors. That is key for any patient to find relief.

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