PNES stands for Psychogenic Non-Epileptic Seizures, a disorder that I have been battling with for about three years now. I was only recently diagnosed with it, and before had seen numerous neurologists and doctors to try and figure out what was going on. EEG's, video EEG's, MRI's and CT scans were in order to see if I had epilepsy. All tests came back negative...which is good right? Well yeah it was to a degree, but no, because we were back to square one.
PNES is commonly misunderstood and can be used to offend the person who is dealing with it. People say that they are "fake", "made up", "fits", and "pseudo seizures". Those terms can create even more distress and anger for a person who has this condition. So, I have created a new word for the diagnosis that doesn't make me sound so psycho: Stress-Induced Seizures.
PNES is literally a disorder in which the brain disassociates, or is removed from reality in order to escape and protect itself from a past traumatic memory, or an emotional distress. The brain's response is to remove itself from reality and make a person somewhat unresponsive. It also causes staring spells, twitching movements, and convulsions; all which look like a normal seizure. The difference is that sometimes the person can still hear things going on around them (though they can't respond), they can have a high number of seizures, have frequent hospital visits, their episode is after a stressful event, and they don't respond to anti-seizure medications.
It took almost 3 years for me to get a diagnosis and begin the treatment for it. For some, it can take as long as 7 years to be diagnosed! Most doctors and neurologists don't know what to do with these episodes and how to control them, so they just send the person to a psychiatrist...who sometimes don't know what it is and what to do about it. When I was told to see a counselor, I became very defensive and embarrassed to go. I didn't want to think that I had a problem with my stress levels and have people view me as "psycho". I knew that I wasn't making them up, but the way people were acting made it feel like it was all my fault. But I am here to tell you that this is a true disorder that many people suffer from, that you are not alone, you are not crazy, and if you stick to the counseling, the seizures will eventually become less and less! The counseling is there to help you manage the seizures, by determining what stressors are the trigger, and how you can help your body deal with it differently.
One major contributor to PNES is a severe past trauma that keeps haunting you, though you try and avoid it. Some people have it so severe that they have also been diagnosed with PTSD: Post-Traumatic Stress Disorder, commonly known in the military communities. As I was reading about this in a book by Lorna Myers and it says,
""Trauma" is the Greek word for "wound." It can take two forms: physical, in which bodily tissues are injured and psychological, in which a very distressing experience causes severe emotional shock that could lead to long-lasting psychological effects. Psychological trauma, therefore, is an "emotional wound.""
~Psychogenic Non-Epileptic Seizures: a Guide pg. 37
They can have intense feelings of fear, anger, helplessness and guilt. It also causes long-term damage to the person's psychological health. When the memory reappears, the person can become anxious, sweaty, heart rate becomes elevated, and the fight/flight mode in your brain becomes activated. As I read the symptoms of psychological trauma in PTSD, I soon realized that I have all of them and have been experiencing it severely for over a year now. It confused me why I am experiencing this without having a history of physical trauma or abuse, but I saw that just because an emotional trauma is not visible, doesn't mean it's not there.
Different times that I have experienced these Stress-Induced Seizures, I have gotten different responses from people. It has happened multiple times at church because of some stressors there, and not many people have known what to do about it. It's happened at friends houses. It's happened at a Behavioral Hospital that I was in at one time. Some people call 911 and make sure I don't hurt myself (which I do all the time), and I can hear them talking in the background about me. Some people sit next to me and pray over me. Some people have told me to knock it off, and walked out of the room while I laid there seizing. And I'd like to tell you that all I need is someone to stay in there with me to make sure I'm safe, and play music on their phone. It helps me relax a little more, and know that if something does happen, I am with someone who will do the right thing at the right time. Different people have different ways of coping with these seizures, so ask your friend or family member what you can do to help them and make them most comfortable.
If you want to know what my seizures look like, it usually starts with me breathing heavier, my heart racing, and my skin becoming clammy. I'll lay on the floor, and eventually I'll have what looks similar to a Grand Mal seizure. My whole body will convulse, and I will hardly be breathing. I usually end up hitting something repeatedly while unconscious but slightly aware, and getting a bruise from it. I can here things going on around me though not as loud or distinct as normal, but cannot respond at all. This will usually last from 30 minutes to two hours, having one seizure after another with a small break in between. I am completely exhausted afterward, and sleep for awhile. I will wake up sore from everything that's happened, and slow to respond. It is one of the most embarrassing things I have experienced, and is even more traumatizing than the subconscious thought that triggered it. Thankfully, it has been three weeks now since I've had an episode!
I do want to thank all the friends out there who have tried to help me during a seizure, even though I know I freaked you out :) Thank you for trying. I wanted to write this to everyone in order to raise awareness about PNES, and give you a look in the life of someone who deals with the disorder. It is crippling, and makes depression even worse. What we need is a friend who is going to stand beside us no matter what happens. We need your support and compassion. We need to feel valued and worth something. Sometimes the only place we can find that is in Jesus' arms.
If you want more resources on PNES, you can read any one of these books which I am reading, and have been told how wonderful they are!
Psychogenic Non-Epileptic Seizures: a Guide by Lorna Myers Ph.D.
View from the floor by Kate Berger and Lorna Myers
Thank you for reading, and I hope this was a helpful resource to you!
He is worthy and greatly to be praised