There are many people around the world who end up diagnosed with epilepsy, often at a young age, even though they don’t actually suffer from epilepsy. Typically, the misdiagnosis happens because the patients suffer from psychogenic nonepileptic seizures, also called PNES.
What Problems is PNES Causing?
It has been difficult to determine just how many people have PNES, but there are some loose estimates. Experts tend to believe that there are between 2 and 33 people with PNES out of every 100,000 people. Around 75% of the people who suffer from psychogenic nonepileptic seizures have been diagnosed first with epilepsy. In fact, between 20% and 30% of those people were thought to have drug-resistant epilepsy.
These misdiagnoses are not corrected quickly, either. Takes between seven and 10 years before a correct diagnosis is made. While they are believed to be suffering from epilepsy, they are often required to take antiepileptic drugs. Many times these drugs have side effects, so these patients are experiencing the side effects without any benefits that would occur for those with actual epilepsy. The misdiagnosis can cost upwards of $100,000 per patient.
These types of seizures do not appear on EEG's, but that does not mean they aren’t real. Those who suffer from this condition find that they have many of the same issues compared to patients with actual epilepsy. PNES patients may have problems when it comes to their employment, relationships, education and lack of independence and freedom that they truly want and need.
Since the seizures don’t show up the same way that epileptic seizures do, many accuse those who are suffering of faking their seizures. These accusations will often come from their own family members and friends, but even medical professionals will accuse them of faking. For these patients who are truly suffering, this is not only frustrating, but also very hurtful. These are people who are desperately seeking help, but aren't receiving any.
Commonalities with PNES Patients
It is estimated that around 90% of the people who are suffering from PNES have a history of trauma in their life. Some individuals may not remember it and others may not want to talk about the trauma, which can make pinpointing the exact numbers difficult. The other 10% of people who have PNES may not have had trauma, but they have problems when it comes to properly handling stress.
The triggers for the seizures can vary from one person to another. Typically, it happens due to reminders of past trauma or stress in a person’s life. The reminder of the trauma might be conscious or unconscious. Many of these patients say that they can feel when a seizure is approaching, as it is forewarned by panic systems first.
Having previous diagnosis of mood disorders and anxiety disorders are common for those who are suffering from PNES. These sufferers often have chronic stress that they are dealing with, as well. People with PNES might not even know just how stressed out their bodies are or how much their bodies are going through. This could be because they are always in a state of stress, it feels more normal to their bodies. Studies have shown that when they are tested, their bodies are exhibiting more stress than they say they feel.
Far more needs to be done about this condition, including a substantial amount of continued research that will help to provide better treatments and relief for PNES patients.