Isn’t the phrase “PNES” confusing?
Yes. It is.
The confusion arises from the use of the word “Seizure”. We defined “Seizures” as events characterized by a SURGE of electricity inside the brain.[visual-link-preview encoded=”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″]
The Events that happen during PNES look like Seizures, but there is no surge of electricity inside the brain during these events.
Therefore, the word “Seizure” in this diagnosis is somewhat of a misnomer.
Why don’t we correct this? Since these events mimic seizures, let us refer to this condition as “Psychogenic Non-Epileptic Seizure-like-attacks” but keep the short form the same – PNES.
Can you explain the rest of the words in “PNES”?
- Psychogenic = From the Mind (Epileptic seizures arise from the brain)
- Non-Epileptic = Not caused due to Epilepsy
So, this is a disease with repeated “Seizure-like-attacks arising from the Mind”.
Ah okay! So this is not a “real” disease like Epilepsy?
Nothing could be further from the truth!
PNES is a very real problem for those who suffer from it.
While we know a bit about the brain, we know very little about the Mind. We don’t completely understand how the mind affects the body, but we know that it does.
People who have a lot of stress, for example, are very likely to have higher blood pressures and early heart attacks. Would you ever walk up to a person who was having a heart attack due to high stress, and tell him he/she didn’t have a real problem? You wouldn’t – It would be quite unintelligent to do so.
PNES is a similarly serious problem, except we don’t understand it as well as we know a heart-attack. This lack of understanding reflects a shortcoming of medical knowledge, rather than of the patient.
Can PNES cause bodily injury or death?
Unfortunately, PNES can cause bodily injury. Just like with Epileptic seizures, patients can fall from the bed and hurt themselves when they hit the floor. Some patients may bite their tongue during these events. Some of these injuries can be severe. However, the chances of a very severe injury are less as compared to Epileptic seizures.
Fortunately, PNES events seldom cause death. Theoretically, contraction of the muscles for a very long time (PNES events tend to be longer than Epileptic seizures) may lead to muscle breakdown and electrolyte abnormalities which may affect the heart. However, only a handful of cases in history have had this problem.
Can Epileptic Seizures be mistaken for PNES?
Certain seizures, e.g. seizures arising from the frontal lobe can appear very strange to people who are not familiar with seizures.
The frontal lobes are the parts of the brain in the front of the head. Patients who have frontal lobe seizures may start running without reason, may start bicycling while in bed – some even have much more complex movements: One patient I knew started to “play his drums” in the air when he had a frontal lobe seizure.
The temporal lobes are the part of the brain behind the ears. Temporal lobe seizures may produce symptoms that at first glance may be mistaken for psychological attacks – Patients might feel very anxious, or intensely blissful during a seizure. Some might feel like they are one with nature, or floating outside their own body. Some patients with temporal lobe seizures feel like they “become one with God” during their seizure.
And so on… Thus, a person who has only Epileptic Seizures may be labelled as having “Only PNES” instead.
Can PNES & Epilepsy occur in the same person?
This is a crucial point to remember – The same person may have both Epileptic & Non-Epileptic attacks. Some researchers have estimated that up to 25-50% of patients with Epilepsy also have PNES attacks.
Therefore, even if you have PNES, it is absolutely essential to make sure that you don’t have Epilepsy as well.
Many researchers have highlighted this point. In 2013, the International League Against Epilepsy (ILAE) proposed a set of minimum requirements for a diagnosis of PNES:[visual-link-preview encoded=”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″]
Thus, a person who has both Epileptic Seizures & PNES may be labelled as having “only PNES” instead.
Is additional testing for PNES needed?
Yes! Because of the two possibilities described above.
Physicians have differing thresholds for ordering tests, but most doctors agree that all patients with PNES should still have an MRI and EEG to rule out Epilepsy. The MRI and EEG are normal if the patient has “Only PNES.”
I like to go one step further. Because I and other doctors have seen the diagnosis of Epilepsy missed in many patients who seemed to have PNES, many of us recommend video-EEG monitoring in many such patients.
In short, video-EEG involves being admitted in a hospital with the EEG leads attached to you head at all times. All the varieties of attacks that you have should be recorded. For example if you have 3 attack-types: fainting attacks, attacks when you feel strange & trashing in sleep, all 3 types should be recorded. The EEG of each of these attacks is then individually studied to make sure there are no electrical surges during any of these attacks.
Once we verify that we have captured all event-types and there are no electrical surges, we can make the diagnosis of “Only PNES” with a high degree of certainty.
Making an early diagnosis of “Only Epilepsy”, “Epilepsy + PNES” or “Only PNES” based on video-EEG monitoring helps tremendously in providing the right treatment. In the long run, this is both cheaper and more effective than treatment based on a subjective assessment of your symptoms.
Is treatment for PNES successful?
If you have only PNES, there is no need for you to take Anti-Epileptic Medications.
The treatment of PNES is to identify & resolve the stressors in your Mind that are precipitating these seizure-like attacks.Although we don’t know the exact mechanism by which these stressors cause seizure-like attacks we know that once we address these stressors, PNES attacks gradually decrease and eventually stop.
Therefore, you must talk freely with your Neurologist, Psychiatrist &/or Counsellor about these stressors. Some of these stressors, such as abuse may be difficult to talk about, but talking about them with your doctor will make things better.
After PNES is diagnosed & appropriate counselling is provided to patients, more than 50% of patients stop having attacks completely (Duncan et al. 2016).
Even after this time, in my clinical experience, continued counselling helps many patients. These patients may have deep-seated stressors, the complete discussion and resolution of which can take more than 6 months.
This information is for educational purposes. It is not a substitute for professional medical diagnosis & treatment. Do not change your medications, supplements or other treatments without your doctor's permission.
There are many more articles in the complete guides.
Dr. Siddharth Kharkar
Dr. Siddharth Kharkar is a board certified (American Board of Psychiatry & Neurology certified) Neurologist. He is a Epilepsy specialist & Parkinson's specialist in Mumbai, Maharashtra, India.
He has trained in the best institutions in India, US and UK including KEM hospital in Mumbai, Johns Hopkins University in Baltimore, University of California at San Francisco (UCSF), USA & Kings College in London.