PNES is not a topic the general population is aware of, even less so than epilepsy. Being a psychological disorder, it’s lumped in with all the others and disregarded. At least in my opinion and limited experience with it.
Ironically enough, and I may be wrong, there seems to be more books out there by patients with PNES than with epilepsy, and basically none by those who suffer from both. We are a small group, with limited access to professionals proficient and knowledgeable in the machinations of both disorders. I’m fortunate to get the proper care I need. Unlike so many others, their PNES is still considered, and called, pseudo seizures, a name that hasn’t been used for decades. The discrimination, and verbal abuse endured by so-called medical professionals is horrifying. They’re tossed from one doctor to another with no one taking responsibility to treat these unfortunate souls. Neurology points to psychology and in turn, psychology points to neurology. PNES patients are left standing on a deserted highway where they can’t move forward and couldn’t go back no matter how much they wanted to. But don’t quote me. I’m new to this, still learning about the disease, and coming to terms with it.
In my experiences, EMT’s (Emergency Medical Technician), paramedics, ED (Emergency Department) doctors treat the epilepsy, being the more serious condition, assuming my neurologist, epileptologist, psychologist, or psychiatrist will deal with the non-epileptic side. Only recently did I experience the ignorance and condescending attitude on a trip to the ED on June 7, 2021.
I arrived in the ED that day after falling in my bathroom, apparently hitting my head on either the tub or floor. I’d been shaving my head leaning over the bathroom sink a garbage bag stretched across to catch the bits of hair as the razor moved across my head. At some point I became nauseous and slightly woozy. I focused on my breathing and counted the swipes of the razor as it moved back and forth. It was a grounding technique to bring awareness to my body in that space of time. To calm myself keeping the panic, anxiety, and fear in check. It seemed to be working, until I stood to check my progress. My equilibrium was off, and I felt myself falling backwards. As my grip on the countertop let go, I yelled for Dev. “Dev, I need help, “I became disoriented as I fell, my back hitting the wall behind me, or so I thought. Dev found me on the floor on my left side, my head between the tub and toilet. I wasn’t responding and fearing the worst, he dialled 911.
I recall hearing voices but not sure what was being said. I wasn’t aware of my surroundings, that the EMT’s removed me from the bathroom and placed me on a stretcher. Ativan and Midazolam (medications used to treat active seizures) administered, via IV and Intramuscular injection. I recall struggling to breathe. Whether it was a subconscious panic attack, I don’t know, but the oxygen in my blood stream had dropped below normal and oxygen tubes placed into my nostrils.
It was well after lunchtime before I awoke to find myself in the ED. I had terrible pains at the right temple and forehead, a result of the Ativan and Midazolam and the seizure itself. Blood was taken, a snack with water, and Tylenol administered to dull the pain. Hours later, I saw the doc, a middle-aged man overworked and tired.
“How are you feeling Ms. McClure?” If he mentioned his name, I don’t remember. He stopped just inside the drape, keeping his distance despite both of us wearing masks.
“I’m okay, I guess.” My head was still fuzzy, and words hung suspended within the fog clouding my brain.
“It appears your Dilantin (anti seizure medication) levels are low …”
“They always are, have been since day one. That’s normal for me.”
“Perhaps we should look to increasing the dosage. I can wri…”
“No. Dr. Young doesn’t want my meds increased. I was toxic back in 2018 and he doesn’t want a repeat of that.” The discussion around my Dilantin levels was an ongoing issue every time I landed in the ED. Since the get go, I’ve never been within therapeutic range, averaging a level of 25 vs the 40-80 it should be.
[Drug toxicity occurs when levels in the blood stream exceed the recommended ranges, can lead to organ damage and, in some cases, death.]
“I see. Okay then. Well, your bloodwork came back clean and there weren’t any indications this was an epileptic seizure, so it was most likely one of your, one of those pseudo seizures.”
“Don’t. You. Dare call them that. They’re not pseudo seizures, they’re real.” I glared at him; my words lashed out like a whip.
“Well, yes, you know, those psych, psycho, you know. Those non-epilept…” his stance and tone of voice grated, his words patronizing.
“Psychogenic non-epileptic seizures.” The blood ran hot and fast through my body. I was angry and shocked at his flippant arrogance.
“Yes, those. Well, it was probably one of those.” He looked very uncomfortable and edged towards the drapes. My sharp tone, raised voice, and anger had startled him.
“Don’t you ever call them that again.” He nodded and swatted the drapes aside, eager to leave and find a more amenable patient.
I was furious. No way was I going to let him speak to me, or any patient, like that. He either missed the class on PNES or was stuck in the past using archaic terms, not caring about their effects on the patient. It’s doctors like him, that give the rest a bad rep, coming across all arrogant and condescending, making a patient feel even worse than they already did. That doctor’s comments weighed heavy on my thoughts.
It was attitudes like his that’d created my soapbox, the desire to educate and spread awareness about epilepsy, and now PNES, to stamp out the stigma attached to each and the substandard level of care that so many are subjected to.
Although my body felt flattened, achy, and sore, I left the ED feeling good that I’d stood up for myself.