We Need To Talk About PNES
Not many people know about Psychogenic Non-Epileptic Seizures.
So, let’s spread the word.
I was diagnosed with PNES a year ago. My first attack occurred on June 2, 2019. When I was first brought to the hospital, the ER doctors told me that what I had just experienced was called Pseudoseizures.
“False seizures brought on by stress,” they said.
That didn’t seem right to me.
I was content with my life and I felt like I had no stress at that time.
I was simply just sitting in the car with my boyfriend, parked outside our place of work. We were waiting to go in for our shift together when my arms and legs decided that they had a mind of their own.
I was uncontrollably flailing around like a fish out of water every day for a week.
It was exhausting.
Ambulances were called and unnecessary trips to the emergency room were made too often. We became regulars after each visit ended with a medical professional saying that there wasn’t much that they could do for me.
Things only got worse.
It affected my speech. At times, I found myself unable to speak normally, I couldn’t walk, and it was difficult for me to eat.
I was confined to my bed, exhausted, and depressed about this horrifying change in my life. I looked at my two kids and felt so ashamed and disappointed in myself for not being able to parent them in my condition.
My boyfriend and other family members in our household had to remove the kids from the room, away from my presence, each time that I had an attack.
And each time, it was heartbreaking.
I felt like an absent mother.
The seizures became violent and lasted longer.
My longest attack was seven hours!
Finally, I was admitted into a hospital where I stayed for three days. The neurologist came to me and said that he didn’t know what he was dealing with.
He had me transferred to a hospital in San Francisco. It was there that they ran an electroencephalogram (EEG) and examined me through video monitoring. They determined that I had a conversion disorder called Psychogenic Non-Epileptic Seizures (PNES).
What is that?
Well, it took me months to come to terms and understand it better but I learned that a conversion disorder is a mental condition that affects the neurological system. PNES is a conversion disorder that mimics symptoms of seizures. On an EEG, a patient with Psychogenic Non-Epileptic Seizures doesn’t reveal abnormal electrical brain activity as a patient with epilepsy would.
But this doesn’t mean that the seizures aren’t real or that the person having them is faking it.
The seizures are very real for us!
Psychogenic seizures are linked to a manifestation of psychological distress such as PTSD, anxiety, or depression. Many people who have PNES have had a history of abuse or past trauma in their lives.
For example, it’s as if I have a handful of unspoken emotions bottled up and I keep pushing it down further and further until an internal switch (or trigger) is flipped and my body just erupts into uncontrollable convulsions.
For the first two months, I was put on antidepressants, anti-anxiety medication, and anti-seizure medicine.
Along with the medication, I was being seen by mental health professionals.
Three months into it all, I was severely depressed.
My boyfriend and I would cynically joke that if I wasn’t depressed before I was now!
Having PNES altered the quality of my life so negatively that I nearly gave up.
Certain family members tried to tell me to think my depression away so that the seizures would go away… They refused to truly understand what I was going through.
There were two occasions when people thought I needed Jesus and brought their ministers over to exorcise me!
It comes down to this-
The people with this disorder are the ones who know the most about it as they are the ones living with it daily.
If you are someone who is suffering from PNES or if you have a loved one who is, I encourage you to voice your journey to healing. I also believe that it is extremely important for anyone who doesn’t have PNES to educate themselves on this disorder.
It’s been a year now since my diagnosis. I went from having attacks every day for months to just every now and then. I am still going… If it wasn’t for my strong support system at home, I don’t know how I would be coping today.
I hope my story can raise some awareness for people suffering from Psychogenic Non-Epileptic Seizures!
You are not alone.
