Although there are estimates that suggest that PNES is more prevalent than multiple sclerosis (MS), it is far likelier that someone will have heard of MS than of PNES. Psychogenic non-epileptic seizures are still a long way from where this disorder needs to be in terms of what health professionals know about it and what patients and the general public know.
Raising awareness requires steady combined efforts from the growing PNES grassroots movement and the professionals who specialize in diagnosing and treating this disorder. From our point of view as professionals, we need to educate several different professional groups. One of the groups that needs further education on this disorder are the first responders and ER staff who deal with PNES in an emergency basis. Neurologists, epileptologists, and other medical specialists could also benefit from learning much more about the risk factors, appropriate treatments and prognosis for these patients seen on an inpatient unit or in their outpatient offices. And especially mental health professionals must be educated so that when a patient calls to request an appointment stating they have been diagnosed with PNES, the professional knows what this is and understands that this is a psychological disorder that they are trained to treat.
On April 1 and 2, a group of PNES and PTSD specialists targeted an audience of mental health professionals including psychologists, psychiatrists, social workers, and psychology researchers at the very well attended ADAA annual meeting. Two different workshops were presented: 1) PNES in children (Conversion disorder, anxiety and depression in childhood: A complex interplay), and 2) PNES in adults (PTSD and PNES: how to safely and effectively implement prolonged exposure therapy).
I can speak about the adult workshop because I was there as one of the speakers along with two exceptional PTSD clinicians and researchers who are professors at the University of Pennsylvania (Drs. David Yusko and Laurie Zandberg). The topics that were covered included:
- an introduction to psychogenic seizures
- an introduction to prolonged exposure therapy as well as an explanation as to why the high rates of trauma seen in adult PNES support utilizing a scientifically proven treatment for PTSD in dually diagnosed PNES/PTSD patients
- Cases were presented to illustrate how this works along with suggestions on how to make certain modifications in the event that a seizure occurs in the therapist’s office.
What was most exciting to me was not only that we had the chance to share this information with a group of mental health professionals out working in the community, but that they followed the presentations with the greatest interest and enthusiasm. They had so many questions and comments that we ran over our allotted time.
Some of the audience members had one or two patients with PNES in their practice and wanted to learn how to better help them. Some were researchers who wanted to know more about how they might use their scientific know-how to study these patients. Others worked with veterans and had a multitude of questions about using this treatment with this population.
I am very pleased with the work we did this weekend in “spreading the word” about PNES to the mental health community and I think you as a reader of this blog might be too.
Why. The question is why is this so a misunderstood and unknown disorder . I as a parent to a new adult sufferer actually had too research and diagnose it to be treated by the cardiologist as a moron when presenting the diagnosis. There seems no collation of information regarding the circumstances of how people develop this. e. g. Head trauma, injection of radioactive die when getting scanned. These are just two examples of how people have developed this condition. I actually despair at the quality of investigation here in theU.k.
It would be necessary to be sure that you are referring to “psychogenic” non epileptic seizures and not “physiological” non epileptic seizures. In the majority of psychogenic non epileptic seizures, patients have a history of psychological trauma, diverse kinds and extents of psychiatric comorbidities (e.g. depression, dissociative disorders, anxiety, etc.), and difficulties with stress management. It seems like what you are referring to is different than this condition discussed at the ADAA.
HI, I need help! I live in Illinois and Florida part of the time. I am having trouble finding a psychologist or any one who is trained in non epileptic seizure. I have called many doctors and can’t find anyone who is able to help. Do you know of any doctors I can contact? I’ve had these seizures for 4 years now. Any suggestions would be greatly appreciated. Thank You!
This link has a list of treating professionals who work with PNES arranged by state. There are a couple in Florida. http://www.nonepilepticseizures.com/epilepsy-psychogenic-NES-information-referral-sites.php
Hello, I need help! I am so confused on non-epileptic seizures. I was diagnosed this disorder and I’m getting no help. I have been to many neurologist and the Mayo clinic. The mayo clinic was the one who said I had non-epileptic seizures after I had a a video EEG. They saw that I was awake during the seizures and couldn’t explain it to me. When I have a seizure I am awake for everything, I hear people saying they pass out I wish I could because the pain is so bad during the seizures. Is there anybody out there who is like me awake during the seizures? I went to my neurologist and was told there was nothing she could do for me I needed to go to a psychologist. I felt abandoned confused and not knowing what to do. A live in a rural area there is no good psycho therapist or whatever I need to help me. I feel like I am labeled when I go to a neurologist to help me They see my records from my primary care doctor, and say oh, you have nonepileptic seizures I can’t help you! Go see a psychologist, and I’ve wasted my money. Why is this happening, I don’t feel like this is psychological. I feel things in my brain moving around, I laugh and say I feel a worm moving in my head before seizure and sometimes it’s there all the time..I have all the test done. And there is no help or advice that you can give me, it would be greatly appreciated. Sometimes I feel like I’m losing my mind.
Please email me at lmyers@epilepsygroup.com with your address and I can see if I can help you find a therapist and recommend some reading materials. Lorna
Lorna Myers,
You and Dr. Silem Benbadis are my heroes. You both give me hope and I cannot thank you enough for providing the medical community and the public with information about PNES. Please dont give up the fight. You speak for the thousands of us who voices have been silenced. You speak up for us when people call us fakers, liers and attention seekers. My faith in the medical community has been shaken, time and time again. Its because of you Dr. Myers that I have hope for the medical community and for all people who suffer with this condtion.
Thank you.
I am on the exact same page as you Emma. You are not alone. I feel your pain. I have seizures all day, everday. That worm feeling in your head that you feel, like your brain is moving around is the same way I feel. I am struggling to find help and drs who understand. I live in florida. Unforunately both places that offer services for PNES arent accepting patients. I am so lost as to what to do. I have taken a leave of absence from work. I cannot drive. I can barely walk most days. This conditon is seriously damaging and ruins lives. The lack of information and knowledge in the medical community is frustrating. So when i read this article, it was a step in the right direction. I gives me hope that more health care professionals actually DO care and want to learn how to treat the condition along with other conditon like PTSD, DID, Anxiety and Depression, etc. I was diagnosed with all of these conditons back in 2014. So Im trying to gain as much knowledge on this condition as I can, so I could maybe educate drs, medical staff and people in general about this disorder.
Sorry I meant to say not psychological!
Hello my name is Adelina and I have been battling with this since February of this year. I am 30 yr old female and it has now caused me to loose my job. I feel so hopeless as I know the episodes are real but the tests are negative and I have seen two neurologist the first one didn’t even see me they just told me to see a shrink. Then the second one actually took the time to explain the two and that he wanted me to do. 5 day veeg and I see him for results in a few wks but what kills me is while I was there the PAs told me everything looks normal and it still looks like PNES and it makes me so frustrated because I feel like a crazy person cause they say I am normal but I have like 4-6 episodes a day and can’t go outside without my husband because the change in light makes me have one sometimes and it’s so sad.
Please email me at lmyers@epilepsygroup.com with your address and I can see if I can help you find a therapist and recommend some reading materials. Lorna
Hello Everyone,
I have sent you an email Dr. Myers regarding my son’s situation. Thank you for any assistance you may be able to provide on an informational level.
My son is 21, and has a complex dual diagnosis of PNES/Epilepsy along with serious physical disability. He was born with arthrogryposis, think cerebral palsy, and no cognitive delay. He has had extensive neuropsychiatric testing and I have a report on all of those results. He continues to be transported to the ER and treated with drugs to stop seizures that are psychogenic. Please advise,
thank you,
Caroline Chamblin
I have been receiving treatment from Afra Moenter at the Rocky Mountain Center for Epilepsy.l for just over a year. She’s incredible. I went from having 15-20 seizures a week to none, all the while getting to and alleviating the root causes of my seizures. I highly recommend her.