Patients diagnosed with PNES sometimes share with me that they have
encountered people who seem to think that they should be able to stop
the seizures by somehow willing them away. Those who hold this
erroneous belief are not only from the general public but also health
professionals (e.g. emergency medical personnel, doctors and nurses in
emergency rooms, and even specialized neurologists). One person I
spoke to recently recalled that a few years ago one of her
neurologists told her: “Just tell them to go away.”
To think that these seizures are somehow under the willful control of
the sufferer and can be so simply eliminated is profoundly ignorant.
It also contributes to the health professionals’ irritation,
dismissive attitudes and contempt for patients who suffer from PNES.
Lastly, it makes the patient feel guilty and ashamed for something
that is in fact uncontrollable without the proper treatment.
Psychogenic non-epileptic seizures are in fact highly complex
phenomena that intrude on a patient’s life due to multiple factors
(past history, present conditions, and a tendency to manage distress
through conversion and dissociation). It requires hard work with a
knowledgeable mental health professional/s to come to fully understand
and manage the triggers, to actively monitor current life conditions,
and to learn emotion and behavior management techniques that can be
used regularly. Treatment can take months or even years and
requires professional help.
The purpose of this blog post is to underscore that health
professionals must stop demanding of patients with PNES that they do
what they can’t. Although the origin of the seizures is different it
makes as much sense as demanding of a patient with epilepsy to “tell
the seizures to go away” or telling someone with a cold to “tell the
sniffles to go away.”
Before I was hospitalized for my seizures, I went to speak with my boss at work. Not knowing that they were seizures at the time, my “episodes of going over the rainbow” as they were referred by administrator and co-workers had become more frequent and I often fell during them.
While in her office, I had a seizure. She became very irritated at my movements, and said, “Stop moving like that! Stop it!”
I replied that I couldn’t stop it.
Again she got angry, “Slap your leg or something; just stop it!”
I began to cry because I couldn’t stop it.
Her response, “Get out of my office! I can’t stand looking at you!”
And by the way, I work in healthcare!
I had not been diagnosed with seizures at that point. I entered the hospital within days of our meeting.
I was deemed crazy and crying out for help. Neither of which I was or am.
I was out of work for 5 months. They took my job away. I returned to work, with a $3.00/hr cut in pay, and no longer in a management position.
Finally, my seizures were diagnosed!!
Some still doubt the diagnosis of PNES. I am relieved by it!
I had a similar experience at an old job. During my yearly evaluation I was fired because of my many absences due to seizures. My supervisor asked me once, “I know you have tattoos, have you been tested for AIDS, I know you can get it from tattoos”. This was a teaching job in special education, with many students that had seizures.
The bigger problem underlying this dismissive attitude is that these medical professionals push patients out the door with no help, no referral, no direction. The first neurologist we saw said, “go to counseling- this is from past trauma.” First of all, that’s an assumption, not a fact. Second, it’s a little (or maybe a lot) more complicated than just searching for a counselor and randomly calling one because you like the way his/her name sounds. There are a variety of therapeutic techniques and approaches, and knowing what is appropriate can be impossible for the average person. And then there is overcoming the insurance issues, etc. We have yet to find a therapist who can work with my son on his PNES, because either his ASD confounds their technique (as in EMDR), they don’t take our common health insurance, or they just don’t have enough experience and knowledge of PNES to be effective. My son had a tonic clonic-like PNES in his therapist’s office last week. The therapist called EMT and was shocked to see the extreme and violent convulsing that happens when my son has a seizure. I was even more shocked at his shock- after all, that is why my son has been seeing him every week for the past several months. Where do you find a therapist who knows what this is about and how to effectively address the issues? I feel so hopeless, and not because the psychiatrists, neurologists, or emergency medicine docs are ignorant, because we’re not. I feel hopeless because we have no where to go for effective treatment.
My therapist hit a trigger with our first EMDR session and i had a seizure for the first time. She had no idea how to react or what she should do. My psychiatrist just throws diff meds at me bc i have extreme bi polar mixed with trauma, PTSD. We have been looking for and. answer for two years. We are no discussing electro shock therapy. I have 3 or 4 different types of seizure ranging from violently shaking and vomiting, to wailing and rocking and gasping to take a breath. I was. hospitalized 8 times in 2 years bc i couldn’t even get in with a psychiatrist. This has literally out my life at a stand still with know answers from two year of therapy and med adjustments. i have generalize anxiety disorder, pnes and bipolar w/. pshychosis. the psychosis is usually brought on by whatever psych med they have me on. Just wandering if y’all found an answer.
I have PNES but am still rather confused by the diagnosis. I have no past trauma and for that matter I handle coping and stress at a complete cbt and dbt level as I was battling an eating disorder for years and went through extensive therapy. Why should I have PNES now when any anxiety I had was in the past years. I finally learned how to cope effectively using CBT and DBT skills so PNES just doesn’t make sense to me…
Even my psychiatrist who has known me for years and helped me through all my tough times doesn’t necessarily think it makes that much sense…
Can there be a form of PNES that has no psychological background?
Molly, you ask some excellent questions. As for never having been traumatized, around 25% of persons with PNES fall in this category. This other blog post talks about that: http://blog.nonepilepticseizures.com/2013/10/i-have-psychogenic-non-epileptic-seizures-pnes-but-was-never-traumatized-is-this-you/
And the connections between stress and PNES is not always so clear: http://blog.nonepilepticseizures.com/2014/02/psychogenic-non-epileptic-seizures-how-can-you-have-a-stress-disorder-if-youre-not-feeling-stressed/
In the early days when in a neurological unit, having been fitting for 20 minutes I was told by a sighing nurse to ‘stop it now’. Prior to that having been fitting for 45 minutes in hospital, dripping with sweat and pleading at the end for a sleeping tablet (3am) to ‘go to sleep now’ and he walked away.
I’ve been newly diagnosed with PNES and have been having the seizures for almost a year and half. My Neurologists and Psychiatrists have all been very helpful, however I am getting more concerned. I don’t feel as though I’m receiving effective enough treatment and like some of the things I’ve read in these other posts I’ve been feeling pretty hopeless about getting any better. All of the health professionals in the emergency rooms and EMTs are dismissing my condition as me acting out when I have no reason to. Sometimes I feel like crying because I don’t know how to get any better or how to get the adequate help I need. I often feel faint, light headed, get tunnel vision and sometimes near syncope before the seizures. I just don’t understand why this condition is not seen as serious as it should be.
Hello, Krystal. I just found this blog. I’ve had PNES since 2017. I am a therapist myself so I’ve been able to apply some techniques and interventions which help. Once I went for a year without having them. Well, in September of 2020, they reared their ugly head again. My seizures seem to be connected to all the trauma I’ve endured the last few years. At any rate, I’ve been so frustrated with the medical field. I’ve been to the hospital a lot these past 11 months, usually by ambulance. I’ve been made to feel as though I am “faking” my seizures. I’ve had ER doctors tell me that my seizures aren’t real. I’ve had nurses tell me to “stop it” and many are just plain dismissive. I’ve been labeled a “drug seeker” because I request Ativan. When my seizures are at their worst and I end up in the ER, Ativan seems to be about the only thing that will completely relax me and break the seizure cycle. It’s hit or miss whether I get it or not.
At any rate, I just wanted you to know that I completely understand where you are coming from. Right now, I am on medical leave from work due to my seizures (I’ve had several episodes at work). This current go-around with PNES has been hard to control. Mine are triggered by anxiety, high levels of pain, and lately, high and low blood pressure levels. I am dealing with chronic back pain, leg pain, extremely high/low blood pressure levels, and my mental health is in the toilet. So, I basically have a lot to deal with when it comes to my psychiatrist and counselor. Like I said, it’s gotten so bad lately that I am now on medical leave. I haven’t lost hope and faith which is huge. Since I’ve gone without seizures for a year before, I feel confident that I can achieve that again. It is just going to take time and hard work.
I hope this finds you well. You last posted in 2015. It’s been 6 years so I hope you’ve made good progress since then!
My husband has be en suffering from PNES for about a year.He is in epilepsy and anxiety medication. And the only thing that is working is hypnosis he has been without convulsiones for about one month. With only two sessions
I was diagnosed with pseudo seizures 6 years ago. I only found out last year what some of my triggers are and I am still searching for help. The doctor who diagnosed me said I was faking it and if he could would she me for the resources I wasted. I have been beaten with my own arms by nurses to somehow prove I’m faking it. I have yet to find a single doctor that even believes they are more than a cry for attention. I recently moved and I am fearful to even tell my doctor that this is going on
My daughter is having seizures daily and a conversation with the cardiologist suggested she may have NEAD! My daughter has Williams syndrome which primerily means she is naturally an anxious person. She is 20years old and started passing out in January 2016 although these episodes have now developed into full blown seizures. We have an appointment with neurology next week but I’m petrified that they won’t be able to help, especially after reading so many horror stories of people being misdiagnosed. Please someone give me some hope!!!!!!!
I read the book, saw the movie and am wearing the t-shirt. I have been told it is “not of the brain”. Episodes not seizures. I have been down the rabbit hole for four years now. These episodes are a part of my life yes but they don’t make my life, I do. Sigma, yes. ” you can stop it”, no. Mind over matter, I’m trying. Been there and done that. NEADs a label not who I am!
I’m having a slightly different situation. I have been having escalating seizure like symptoms for about 2 months. After not being able to get into a nuero anywhere in the state without a 4-6 month wait I was told to go to the ER. There the surgeon talked to me for 10-20 minutes. Told me my problem was stress, PNES. She said there was no need to even get an eeg. I said can I get one anyways just to be safe. She said sure the psychiatrist would probably want to see that, and we are “gonna jack up your Zoloft”. I’m sorry but I would think a doctor of that caliber would want to rule other things out before jumping to a conclusion that could prevent a different serious illness from being diagnosed! This happened to me before. Doctors told me my horrible heartburn, waking up in the middle of the night throwing up stomach acid was anxiety. Come to find out it was esoniphiloc esophagitus and 13 food allergies.
Auto correct traded nuero for surgeon sorry!