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.