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PNES: Seizure Disorder or Neurological Mystery?

Many times National Seizure Disorders Foundation (NSDF)has come face to face with the question “PNES, is it a seizure disorder or neurological mystery?” NSDF has found through research online and offline PNES is a physical manifestation mimicking seizure disorder while remaining so elusive much of the medical community considers PNES a bit of a mystery.

Imagine for a moment you experience a seizure for the first time. All the classic symptoms are there. Witnesses even tell you afterward that it seemed to be a Gran Mal ( Tonic Clonic)seizure. Days go by and you start to see a pattern, so your epileptologist orders a video EEG for about a week in order to get a solid diagnosis. Many seizures are detected. At follow up your epileptologist informs you these are not seizures at all. Confused and a bit outraged you wonder if the epileptologist has the proper training.

Does an epileptologist have the correct training?

An epileptologist is a neurologist who specializes in the treatment of epilepsy . Epileptologists are experts in seizures and seizure disorders, anticonvulsants, special testing, and special situations involving seizures, such as cases in which all treatment intended to stop seizures has failed.

Only the trained eye of an epileptologist can correctly read EEG to determine whether it is normal or abnormal for PNES. Neurologist often misdiagnose PNES by incorrectly reading EEG. Training is just not there for neurologists. The advice of National Seizure Disorders Foundation (NSDF) is to consult with an epileptologist when you experience two or more seizures within a year.

 

If PNES is not a seizure disorder, what is PNES? Psychogenic (non-epileptic) seizures are attacks that look like epileptic seizures, but are not caused by abnormal electrical discharges.

PNES is not a physical brain disease or disorder, most commonly PNES attacks are emotional,stress induced,and result of traumatic childhood experiences. For this reason it is recommended treatment for a PNES survivor to seek counseling through psychotherapy  under the direction of prescribing epileptologist.

A few quick facts:

  • PNES attacks are sometimes called pseudoseizures, “psychogenic non-epileptic seizures” (PNES) is now the preferred term.
  • PNES are the most common condition misdiagnosed as epilepsy.
  • PNES are not rare, with a frequency comparable to multiple sclerosis.
  • In general, 1 in 5 of patients sent to epilepsy centers for difficult seizures is found to have PNES instead of epileptic seizures
  • 75 % of PNES survivors are women
  • Most reliable test to make the diagnosis is long term EEG-video monitoring with which diagnosis can be made with a nearly 100% certainty.
  • About 80% seizure survivors have been misdiagnosed because much of the diagnosis relies on descriptions reported by observers.
  • Upon correct diagnosis it is reported about 10% of PNES survivors also have epilepsy

 

National Seizure Disorders Foundation continues to bring you facts about types of seizures and seizure disorders in order to educate you whether you are a seizure survivor, caregiver, or professional. Please leave a comment for NSDF so we know the effect this article had on your life. Do you have questions? Do you need support? Are you searching for more about seizure disorders? We appreciate that you let us know.

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