The following article is written and shared with permission from both the ranch girl and her parents. The goal of this article is to spread awareness on Psychogenic Non-Epileptic Seizures, aka PNES.
Saturday, May 22
The afternoon sun shot down it’s powerful rays. Our six ranch girls, Ms Shar, Ms Lora, and us unit girls were all in the arena practising our drill team. Since we had just completed a pattern in the drill team, we were waiting for Ms Shar’s order on what to do next. She and some of the girls sat on their horses at one end of the arena and the rest of the girls and I sat on our horses at the other end. Daisy, a ranch girl, was sitting beside me on her horse.
"Oh it's hot out here!" she mentioned as she wiped her sweaty brow.
"I know. It sure is!'' I casually replied. I glanced away.
A brief pause followed.
"I'm gonna faint!"
"Are you serious?" I whipped back to face Daisy.
"Yeah"
I saw her body starting to fall over the saddle horn. Immediately, I sprang off Flicka and sprinted to Daisy’s side. Standing beside the horse, I braced myself to grab her if she fell out of the saddle. I had never witnessed someone faint before but I heard they are out for like 20 seconds or so, then they come back to, and all is well. So when Daisy regained consciousness moments later, I thought everything was normal.
‘’Whew! That was weird!’’ Daisy remarked as she straightened herself back up in the saddle.
‘’Yeah!’’ I replied. ‘’Here, let's get you down!’’
One of the other ranch girls was now at my side. Together, we reached up to help her down. At that moment, Daisy started to faint again. As we were pulling her down, her clothes got stubbornly stuck on the horn. We both braced Daisy’s limp body with one hand while our other hands frantically unhooked her clothes. Once we got her unstuck, we laid her down on the sand in the arena.
By this point Ms Shar had joined us. Daisy was still out. Across the arena, Ms Shar hollered for Ms Lora to come. We knelt down around Daisy. When she regained consciousness, she started crying. Ms Shar yelled for someone to run and grab cold, wet rags and water bottles. Hannah snatched onto those instructions and tore up the hill to the house. A couple minutes later, Daisy lost consciousness again. Her body stiffened and her eyes rolled back.
When she came back to, we sat her up. Ms Lora and I knelt behind her back to brace her weak body. For a few moments, she was okay, except she cried uncontrollably. But soon her body became limp and her mind unconscious again. We laid her back down. Hannah arrived. We rapidly applied the rags to her forehead and neck while also dumping cold water on her feverish body.
The rest of the ranch family had gathered around. One ranch girl was freaking out as she watched the scene, so Hannah grabbed her and went up to the house with her. Edna and some of the other ranch girls left to take care of the horses. A couple girls stayed.
I saw Ms. Shar grab Daisy's wrist and check a pulse. Neither Ms Shar nor Ms Lora said anything for a brief moment.
"Is she breathing?" Ms Shar asked as she glanced up at Ms Lora.
"No," Ms. Lora replied." Where's my phone? Oh it's upstairs!" She paused and then hollered, "Someone run and get my phone! We need to call 911!"
"I'll go get the Tahoe," Ms. Shar leaped up.
Ms Lora and I started slapping Daisy's clammy skin as we firmly called out her name. She regained consciousness. But it didn't hold. From then on it became a continual repeat of slapping her, her coming to, and then her going out again.
Then the slapping stopped working. And she quit breathing. Daisy laid lifeless in our arms. Ms. Lora glanced at me, "Should we do CPR?"
"Yeah I guess... I forget how to though" I replied. I desperately wracked my memory of my First Aid course days.
"I think I know how... Here, we need to tip her neck like this," Ms Lora remarked as she tipped Daisy’s chin up. Then she bent down and performed mouth to mouth.
Immediately, Daisy lurched up and started coughing. For a few moments we had her with it and then she lost consciousness again. Ms Lora kept repeating mouth to mouth and thankfully every time Daisy came back with it. White snotty gunky stuff bubbled up from Daisy's throat and splattered into Ms. Lora's mouth. So every time Daisy sprang up from responding to mouth to mouth, Ms Lora turned the other way and spit out the gunk.
Next Daisy started getting violent. Whenever she regained consciousness, she kicked and flung her arms around and cried and hollered, ''Let go of me! Let go of me!'' Ms Lora and I tried our best holding her down while Ms Lora kept repeating, "Daisy it's okay! Daisy, it's me. Daisy, you are okay!"
Then, Ms Shar came flying up in her Tahoe and backed up as close as she could get. She was on the phone with 911. Daisy was still going from violence to unconsciousness repeatedly. It switched that fast. The ranch girl, who had gone up and gotten Ms Lora’s phone, was back down. She helped load Daisy. It was a challenge loading a human who is fighting us off with all her might. And then when she goes out, her body becomes dead weight. In the back of the Tahoe was myself, Daisy, and then Ms Lora. Plus trash bags. We kinda just laid/sat on the trash bags. While Ms Shar swiftly drove, we 3 bounced around in the back. At one point on that ride, Ms Lora looked at me, "I know God is with us back here. I can feel it."
"I know. Me too. I would never be this calm without Him!" I replied.
The whole way to the ER, Daisy kept repeating the unconscious and conscious cycle. Every time though, the time that she was conscious grew shorter and shorter. Thankfully she stopped being violent and instead started saying absolutely crazy, comical things. We laughed so hard. Later Ms Shar said whenever she heard us laughing and chatting in the back she slowed down but the moment we got quiet again she sped up, for that's when Daisy would lose consciousness and Ms Lora would do mouth to mouth again with her.
We asked her questions about her birthday, her name, and her animals. Basically all her answers to that were, ‘’Yeah.’’ It was clear her mind was a frazzled mess and yet we were so grateful she was at least communicating a little. I have never been so grateful to hear someone cough or see someone’s eyes focus.
Finally, we came barreling up to the ER front doors. As we were unloading Daisy into a wheelchair, her body went completely stiff again.
They wheeled her behind the doors and Ms Lora followed. Ms Shar went and parked the vehicle and I stayed in the waiting room. Then ms Shar came in and went back to the room.
While I sat in the waiting room, I pondered the past few hour's events and thanked Jesus over and over again for being with us. I also realized that I still had toilet paper jammed into my one nostril, cuz before drill team practice I had had a bloody nose. I removed that.
The doctor did a CT scan on Daisy and checked her blood pressure and sugar levels. They didn't find anything unusual, so after a few hours they sent us home. This whole time we still thought she had just had a heat stroke. Ms Lora though, had a gut feeling something else was up. (Side note: your gut feeling is never wrong.)
The next morning, Daisy had another episode. This time the ambulance came to the ranch house and picked her up. The EMTs had her in the back of the ambulance, but they didn't take off. We found out later, they had to stabilize her before they took off.
Doyle and Teresa, who are Daisy's folks, arrived that morning. Ms Shar, Hannah, Edna and myself went to the hospital in the afternoon. We got there in time before the ambulance left to transfer Daisy to Little Rock. We saw Doyle's, but not Daisy. When the ambulance was waiting there, about to take off, and I knew Daisy was in there by herself, all I wanted to do was go stoozing up there, jump into the back and hug her so tight.
At Little Rock they did more testing. And Thank Jesus we found out what was really happening.
Daisy was diagnosed with Psychogenic Non-Epileptic Seizures, aka PNES.
If you are like me, you have no idea what all those words are except the word seizure. And even that word seems frightening. Yeah, I felt the exact same way. Until I learned what these seizures were, why they were happening, and how to take care of the person having this seizure.
Since awareness for this condition is rare, I would love to tell you a snippet of what PNES is.
Trauma does crazy things to the body. Sometimes when a person endures intense trauma and healing has not fully occurred, the brain will truly shut off. Despite the brain being the most remarkable organ, it can only take so and so much. Sometimes it will become overloaded and the brain will then be like, ‘’WHOA! This is way too much!’’ and it will shut off.
In my research, I found a paragraph that describes this accurately: ‘’The brain is an incredible organ. In extreme conditions it can actually activate or deactivate certain parts of itself. The process of deactivating is called dissociation. Dissociation is a very powerful defence mechanism often seen in those who have had extremely overwhelming experiences and undergone severe trauma. Essentially what happens is the conscious mind splits off from the ''here and now'' in order to protect itself. The individual may still be awake and even somewhat responsive but it's actually detached. The mind has ''gone away'' in order to avoid the pain.’’ (from a book titled Psychogenic Non-Epileptic Seizures: A Guide.)
Now, the human may develop the condition called PNES.
Even though epilepsy seizures and non-epilepsy seizures often have the same behaviors, these two types of seizures are the opposite.
When an epileptic seizures occur, there are electrical discharges in the brain. These seizures are caused by physical injury, faulty wiring during brain development, brain inflammation, missed medication, and so on.
When a non-epileptic seizure occurs there are no abnormal electrical discharges in the brain. These seizures are actually physiological driven. When a person is exposed to trauma, abuse (physical and/or sexual), death of a loved one, or PTSD, their mind sometimes cannot handle it and stress induced seizures begin. These episodes are the body's way of dealing with stress and expressing what the mind and body cannot. Sometimes the trauma is from such an early age that the person cannot verbally express it for they could not physically talk when the trauma happened. The unconscious brain does not treat time the way the conscious brain does. When these seizures start occurring it may be from something that is present day or it may be from something that happened years back and only now the brain has become overloaded.
Through a video EEG, the doctors are able to diagnose PNES. That is when the patient is hooked up to a computer to video the patient while also showing EEG readings of their brain activity. The patient has to have a seizure during this test. If it does not happen naturally, the doctors will induce one. Typically the video EEG test takes a couple days, but with Daisy it only took 10 minutes. That was just another miracle in this all!
You may wonder exactly what a non-epileptic seizure looks like. There are numerous different behaviours. The person's eyes might start rolling back, they may get violent, and their body might start shaking or have spasms. Confusion and memory lapses are normal. The body may also become stiff and speech will probably be slurred. The person has no control over their body. During the seizure and for a while afterwards, the human’s brain will automatically go back to the mental age that the trauma happened. As time progresses, the brain will start maturing more and more and it will one day be back to the mental age the human is. Physically the seizures do not hurt them, but mentally it is difficult to process. During an episode, they may go unconscious. And sometimes they stay conscious but are unable to respond to anything. Non-epileptic seizures last longer than epileptic seizures. Typically they last 10-20 minutes, but often the exhaustion from it will last hours afterwards.
So what do you do when a loved one is having a non-epileptic seizure? I wondered the exact same thing. Staying calm is the most important. For me the first couple episodes I watched, I was wide-eyed and on edge. I didn’t understand it, obviously. But by now, we are all used to them and panicking never happens anymore. Often the human will be able to identify a seizure coming on, and it’s helpful if they let you know. If they don't mention anything, you usually can quickly pick it out by watching them. A lil before the seizure and as it is coming on, their actions will often start becoming repetitious. When the seizure is happening, you cannot stop it. Keep them in a safe environment. Just stay with them. Preferably keep them laying down but like I said they won't usually stay still. Since they might crawl, walk, or wiggle around, make sure all harmful objects are avoided or out of reach for them. When they are laying down, make sure their head is secure and not at an awkward angle. Sometimes they may just lay there in a daze. Dizziness is also common. Keep tabs on their breathing. In conclusion, you simply wait it out with them. They will come through it eventually.
While researching this topic, I read that doctors find it uncomfortable to talk about this diagnosis and struggle with explaining it to their patients. Often the patient will wonder if they are crazy. They are not. They carry some kind of emotional wounds that need to be healed. The patients sometimes are told by their surrounding people that their episodes are fake because in their brain there is no abnormal brain activity when they have a seizure. Their episodes are absolutely not fake. Since seizures can be vulnerable, and since this condition is so unheard of, it’s no shock that the patient often will find the diagnosis difficult to accept.
For many individuals it takes years for them to actually receive a diagnosis of PNES. The average time to diagnose this condition takes 7 years. After the first few episodes, the patient is usually just diagnosed with epilepsy. The patient is then given anti-epilepsy medication but since that is not the true diagnosis, the seizures continue. A person with PNES will not respond to anti- seizure medication and actually those meds can worsen PNES.
So what now? As of now, there are no proven medications to treat PNES. Basically the only type of help is therapy. If the person is able to successfully work through their trauma, abuse, or PTSD, it will lessen their seizures a great deal. CBT (cognitive-behavioral therapy) is one type of therapy that may help. At the ranch, two of the main types of therapy we use are TPM (transformational prayer ministries) and IFS (internal family systems). If the human is an adolescent, they have a much higher rate of recovery. The seizures may still occur throughout the rest of their life if they are triggered majorly. Like all of us, it’s crucial for the human to take proper care of their own physical, mental and emotional health.
Another fact I found interesting is that women are more likely to develop PNES. 75% of PNES patients are women. It's unclear as to why this is, but it probably has to do with the fact that women often experience more trauma and abuse than men do.
Like I have stated earlier, the awareness of PNES is scarce. For a long time this topic has remained a hush hush topic in the medical field. Until now. All the articles we find on it are only from recent years. I am not sure why.
This article hardly even scratches the surface of this topic. As PNES is being pulled out from under the rug, more patients, more info, and more awareness is being brought into the light. Which is awesome! Because the more people know about this condition, the more help can be spread.
I still feel so naïve about this all, and yet I love researching and learning about it. It’s so fascinating how the mind and body are so intertwined!
Through this whole journey, God of course has been doing God-like things! From that first day back in May and how He hovered over us there on the arena sand, to the helpful doctors and nurses at Little Rock, and then to the healing now in Daisy’s life, God has been a constant miracle performer! I feel so privileged and blessed that I can be a part of this all.
-written by Jera Doerksen, current volunteer at Raising Hope Ranch