Recently I read a couple of comments about psychogenic seizures on an epilepsy professional Forum and was thoroughly disappointed and irritated to say the least. Although the tone of the comments was essentially professional and apparently trying to be helpful, I was taken aback by how dismissively the PNES patient was spoken of by these professionals who are the front line health providers, perhaps some of the first a PNES patient will encounter in the search for a diagnosis. The words “faking a seizure,” “trying to get on meds,” “seeking attention,” and the ever-present term “pseudo-seizures” were bandied about with no apparent concern that the people they were referring to are human beings and patients in a medical setting.
Some comments appeared to suggest that EEG testing was being used as a form of “gotcha!” And suggestion techniques were being described (these techniques have been abandoned in most major epilepsy centers because of their potential to hurt patient-doctor trust). This position was proudly put forth and in complete ignorance of the existing research that shows that the vast majority of patients with PNES do not fall in the category of “malingering” and are not purposely “trying to pull the wool over the health system’s eyes.”
Continuing on, I did not read a single word about how once the diagnosis of PNES is made how the professionals go on to help these patients (i.e. referring them to the proper treating professionals, counseling, etc.).
Fortunately, just as my mood was about to be completely fouled up for that day, I came to a third comment and was reassured when I read it. The health professional who made this last comment was arguing many of the points I just made above and was calling for caution in making these wide-brushstroke statements and truly seemed to understand the severity of PNES. Moral of the story: many health professionals are still astoundingly ignorant about PNES but there are also a growing number of insightful and caring professionals. What do we need to do? Continue relentlessly educating health care professionals and the general public about PNES. This can change!
P.S. I added a comment as well on that very same forum and made many of these same points I just put forth here.
It is very very frustrating. I feel so let down by the medical professionals that I relied on for diagnosis.
The neurologist (movement specialist) delivered the diagnosis in a patronizing way and basically just said to follow up with a psychiatrist and a psychologist. The nurses advised me to try to ignore it as if that would make it go away. A year later and my daughter is still suffering from these seizures every single morning of her life. She can’t go to school and her quality of life has decreasd immensely.
We are going to be following up with Dr. Kanner in Mia. I am working on scheduling an appointment.
I wish I could agree with you that it is a small minority of healthcare professionals that have these kinds of comments about patients with PNES. Our family’s experience while seeking professional diagnosis and treatment for our daughter’s illness has been very frustrating. She has heard ALL of the statements you spoke of about faking, drug-seeking, attention-seeking, etc. From EMT’s, to ER staff, to hospital staff, to mental health providers, etc. We watched her world crumble, from an out-going, athletic, full of hope for a bright future, young college woman, into a person whose faith in the medical system crashed, when she needed it most. More damage was done to her psyche, by so-called medical professionals than the appearance of these devastating seizure episodes, that shook her future from its foundation. Ironically, the first seizures, she had, ever, were coming out of anesthesia, eighteen months apart, for a shoulder injury and then appendicitis. Unfortunately, the seizure episodes became more regular and invasive, and we watched helplessly as her college pathway crumbled and her friends disappeared because they didn’t know what to do.
I would say that it is a minority of healthcare professionals that want to help find the answers and help these patients. The majority, just want them to go away… I hope to see change, for our daughter’s sake, and for our family’s sake. Your book, should become required reading for all healthcare providers, no matter the level. It may just be the start of a needed shift in respectful care of patients with this devastating condition!
I have fought with epileptic and nonepileptic seizures for 40 years. I have been belittled, told that I was emotionally disturbed, questioned as to why I “couldn’t just live with it”, been told that I was faking in the middle of a seizure, instructed to tell my seizures to go away and been refused treatment in 2separate emergency rooms.
I have a good neurologist who is never available and there are no support groups near me.
I want to organize a network of support groups and education seminars dedicated to informing medical professionals and the general public about PNES. Please let me know if you would support me in this effort. Thank you. ENOUGH!!8
I phoned my doctor because I was having these seizures all day , my gp told me phone ambulance because I’m epileptic , the paramedics told me I didn’t need to go to hospital because it wasn’t an epileptic seizure , when I was in hospital the nurse hadn’t even heard of nonepileptic seizures ,I saw another nurse and her attitude was ignorant towards type of seizures , in the end I felt so embarrassed by it all I had my son to take me home
Mary Martiros:
I want to be in your support group! I have had 200 of these seizures in the last 2 years and I am currently in college. I had one last night and as usual was treated horribly by the staff. thanks
Thank you, as always, Lorna, for your astounding advocacy efforts! Because of people like you, our support group has a professional voice.
Thank you, Amber! Will you be coming down to NJ in September for the PNES conference? I would like to meet you in person.
I feel as if the doctors are just Fed up of seeing me , when I turn up and say I feel strange , confused , I was in hospital after seizures in November but mri scan didn’t show I have epilepsy , I take medication for it , now I’m told I have to see a different neurologist that is his field of non_ epileptic seizures . Not enough information was given to me ….
during my 9 years of suffering with this condition, I have come to the conclusion that the willingness of most neurologists and ER Dr.s to accept this illness exists as a real condition is appalling. I had an ER dr. tell me when he came into the room “what I had did not exist”. After a few minutes of what seemed to scolding by this Dr. He said “I don’t treat what doesn’t exist.” This to me is doing more harm to the patient then holding a gun to their head.
My 17 year old was diagnosed with epilepsy after 2-3 years of no info or treatment from the neurologist we were using. He kept focusing on her electrolytes & not the “spells”. She had a spell in the ER & a nurse recognized it as a seizure. We switched doctors, got treatment for over a year, then spent a week in the EMU & like a lot of patients, no seizures the entire time! As soon as we left, they started back under normal every day activities. Because we couldn’t trigger one at the EMU, her epileptologist says it’s gone front epilepsy to a “Learned response to stress” & is now PNES but refuses to give us a diagnosis, we looked up what she said & found PNES. She dropped her from her practice & sent her to psych. We’re up to 11 seizures an hour now. We’re looking for a new neuro, hope the appointment Monday helps is some way. She had a tonic conic Wednesday & the old office said “call tomorrow”, she didn’t know who we were! She snapped out of it 30 minutes later but was still feeling “off” the rest of the evening. Never seen her choke before in a seizure unless it was a tc. So frustrating!
We just had a terrible experience. My daughter who has PNES was being transported to a hospital because she was having some atypical (for her) seizures after hitting her head. The EMT was told of her PNES diagnosis, and when she had a seizure in the ambulance, he yelled at her and belittled her for faking her “pseudo” seizures and even when we arrived in the ER, he kept insisting that “pseudo” seizures = fake seizures and causing a scene arguing with me. The ER staff kicked him out of the hospital, and both the nurse and myself filed complaints with his company.