For the past year or so I have had a survey up on www.nonepilepticseizures.com homepage. It asks: How long have you been suffering non-epileptic episodes? 109 responses were received. Note that this is not a scientific survey that is based on those who wished to respond.
Over 40% reported that PNES has been part of their life for over 5 years! Thirty-seven percent reported that PNES has been part of their life for 1-5 years. And a 22% reported that they had been dealing with PNES for less than one year.
A likely contributor to the lengthy presence of unremitting PNES is that so many patients are given a diagnosis as severe as PNES and are sent on their way without the appropriate referral to psychology/psychiatry. Being referred to a health professional quickly, starting treatment, and working hard to get better will improve your chances of doing just that.
But there is likely also a second contributor that adds to this prolonged suffering of PNES and it resides in the fact that so many mental health professionals are unfamiliar with PNES and even unwilling to take on such a case because they feel it is beyond their skill-set. This results in patients being turned away and facing the added obstacle of having to educate and trying to convince the therapist to take them on. Some patients report no luck even after making ten or more calls to therapists.
It stands to reason that if you are suffering a serious condition, (psychogenic seizures included) and you do not receive treatment, you will probably be suffering it longer. And this is very likely contributing to why 77% of the survey respondents have been living with PNES 1 year to >5 years after diagnosis.
Both of these problematic areas in health care of PNES need to be remedied. Diagnosing doctors need to to have a proper referral source for their patients and mental health professionals must become educated.
We are working to improve this. Some of the projects that I have put in place include the publication of Psychogenic Non-epileptic Seizures: A Guide. Royalties from this book are going to the Epilepsy Free Foundation (www.epilepsyfree.com) to support educational programs on PNES for health professionals in the near future and to provide continuing education scholarships for persons with PNES. But I would like to hear from you, what else do you think we need to be doing and how?
When someone visits a doctor for the first time, he/she is given a questionnaire regarding health history and present concerns.
I wonder about a questionnaire or at least part of a questionnaire re signs/symptoms that might indicate psychogenic non epileptic seizures.
I was amazed at the signs and symptoms that either I or my physician, even my therapist did not pick up on for years!
Answering questions in say, a mental health part of a form might give a little insight into the possibility of PNES.
Yes, good idea. Just like we use medical intake forms, there should be screening for psychological factors: depression, anxiety, historical facts that might predispose to PNES. These could then serve to signal that perhaps longer EEG monitoring or even a psych consult are recommended.
Our family has been dealing with PNES for 4 and 1/2 years. We see similarities with the way health care has developed for PNES and Celiac Disease, an autoimune disease, our family has also dealt with for the last 18 years. People are now familiar with two words, Gluten Free. A few years ago if you said that you got a puzzled look. It isn’t by accident that Gluten Free is so well known now. It took huge effort on the part of Celiacs and some dedicated physicians to get the word out. It can be done! We got the labeling laws changed, with the help of lobbyists and Celiacs; money for RESEARCH is raised through an annual walk, centers for research were created; the momentum grew as people were educated about its prevalence, The celiac community had well established support groups, Celiacs had to step up and speak up about their condition. Not as easy to do with PNES but nothing changes unless information gets out. We did T.V. news interviews, articles for newspapers, magazines, and radio; an international symposium on celiac disease for physicians began, Education is a huge part of what needs to happen….they have continuing ed. for healthcare on celiac…we need that for PNES. I’m sure you would like to continue with more research. I know research takes money and fund raising. I’m so encouraged by what you have started with. You are on track. It would be so helpful if there was a seminar or class therapists could take that would help them know how to go about treating this. The system of support groups can be very helpful both for support but also to serve as a vehicle to work on projects to advance the treatment of PNES. The Celiac community is very connected that way. I do think most people want to help but just don’t understand what they are dealing with. General information to the public would help. Somehow the mystery of PNES has to be uncovered so people won’t fear it. The more it hangs in the shadows the more room for all sorts of crazy distortions about it. Thank you for shining a light on it!
Very on target. Your comparison of PNES to another “relatively new” condition that has become well-known now in the public and I agree that it takes a group effort, exposure on media, education of professionals, etc. Thank you for this positive post!
If you have gluten sensitivity and/or Celiac disease, your seizures may not be “psychogenic”. There’s a proven connection between Celiac disease / gluten sensitivity and seizures originating in the hippocampus or occipital lobe. Seizure activity that originates in the hippocampus, or deep within the occipital lobe, may not be recorded by an EEG. I think it’s overly simplistic — when the biological cause of an illness is unknown or poorly understood — to assume that the default etiology is some kind of psycho-pathology. Personally, I think the term “psychogenic” should be replaced with “idiopathic” (INES). Many dozens of diseases, once believed to be caused by conversion disorder (AKA psychosomatic, somatiform, psychogenetic, hysteria, etc.) were later found to have a biological etiology as unique to the disease as a fingerprint is to an individual. Why keep perpetuating the theory of the wandering neurosis when, repeatedly, it hasn’t withstood the test of time?
My 14 year old daughter just started having PNES less than 2 months ago. I have been on the internet everyday researching, trying to figure out where to take her, because we cannot find anyone in OK who has experience treating this condition. Even with resources and extreme motivation to find therapy, we cannot get help for our daughter. It would be great to advertise to epilepsy centers in the US, so their doctors could be trained on how to break this news to hurting patients and family members. They should at least have basic information about how to find help, especially for those who are willing to go out of state to receive treatment.
I had my first (very scary) major seizure when I was 16, though we didn’t realize that’s what it was. My family assumed I’d been on drugs, though of course I knew I hadn’t.
Fast forward into adulthood: Finally, the episodes get diagnosed — epileptic seizures! It seems shocking, but at least now they have a name.
Fast forward again — seven years. The new neurologist recommends V-EEG, several days in the hospital. New diagnosis: PNES! More shock; it’s a different name.
I’m 61 now, so it’s been 45 years since that first frightening seizure. (And I’ve wondered about so many other unaccountable incidents since then!) I still need to stay strong, to keep taking care of myself, but strength and coherence seem slipping away, with nothing to stop the flow. I’m afraid. I’ve had wonderful moments in my life, but also feel sorrow for what has been lost.
I’m curious how things will proceed now that they know it is the central nervous system not working properly and newly diagnosed patients are getting better help with physical therapy than with psychotherapy/psychiatry. Does this change your views on anything? Had this many years and it’s more like the weather makes it bad than anything else.
Hello Jack, Patients with psychogenic non-epileptic seizures are not confirmed to have “a central nervous system that is not working properly.” There is a theory that there may be functional dysfunction in the nervous system but this has not been proven. As for more patients with PNES improving with physical therapy than with psychotherapy, I am not aware of any research/publications that have confirmed this at all. While there is a growing body of research that shows that cognitive behavioral therapy and trauma focused treatments are improving the symptoms in these patients. Perhaps you are referring to patients who have something other than “psychogenic” seizures.
Dr. Jon Stone, Dr. Curt LaFrance and Dr Carson all published work within the last year staying physical therapy is the first treatment they recommend. They are designing clinics for this at the NIH, and other doctors are following suit. Just last week one of these clinics was published about in Australia, which I heard they are training other doctors in other states to do the same. I was just curious.
Hi Jack, Please note that this form of therapy is recommended for functional movement disorders. While it is true that psychogenic non epileptic seizures (PNES) are a type of functional neurological disorder-treatment is different than for other FNDs. Psychotherapy is the recommended form of treatment for PNES. Physical and speech therapy are not the indicated treatment for PNES.
This is the first place I’ve actually gotten a chance to see how other individuals cope with PNES/NES. I have had a lot of time (almost 11 years even though I just turned 28 yrs old) to assess why I began and continue to have episodes. I was told by a neurologist at OSU I could be experiencing episodes when I’m stressed out or experiencing the happiest time of my life. It was relieving to know 1. I’m not causing this (doctors told me at first I was faking it) and 2. It wasn’t just related to stress. What I didn’t understand was what he truly meant by his statement. He was wise in what he said, because I later learned no matter how happy I thought I was or how “good things were” the episodes were always a potential for occurring.
They didn’t stop me from getting my BA and MA, but encouraged me to enter the field of counseling. I wanted to better understand why I began having the episodes and how to help others. Even though I had been diagnosed with depression I had always been optimistic and hard-working. As I work on my masters I begin to slowly understand my there are a lot of experiences I needed to work through before becoming a counselor. Had been already to 3 or 4 therapists and hadn’t seen a huge difference since I wasn’t experiencing the episodes as often as when they first began.
However, my world turned upside down when I graduated and started working. I did well for a while, but hit the ground fast after close to a year. Not to get too detailed, but it led to me being put on a medication I should’ve never been put on (almost died), had increased migraines (leading to a lumbar puncture–had spinal leakage, had to get PT from muscle spasms), and got meningitis with a back bone infection (botched lumbar puncture from before). On top of that I was having episodes due to stress, because I was being threatened to be fired (due to FMLA running out) and being called a liar.
Finally quit there after 2 years of working and immediately began work somewhere else. Not surprisingly, I started having episodes sporadically and almost got fired until I got FMLA. Ran out of FMLA and got fired. I’m currently working and can’t get FMLA until next March. I’m close to being fired, again. I try so hard to not let the stress overwhelm me. I’ve had a hard time being able to recognize the lower levels of stress I’m experiencing, which leads to the stress levels building up past my personal stress threshold.
As a trained mental health therapist I’ve luckily learned to recognize what my triggers are to stress and know plenty of stress-reducing strategies. Honestly, I’d love to say I use all my coping skills…another problem I need to work on.
My past has had a large effect on my anxiety and depression, which has impacted my thoughts, emotions, and actions to the present day. I’m not discouraged to try therapy (5 times). All up until the last therapist none of the therapists knew how to help. The last one used Internal Family Systems (IFS)–a type of trauma therapy, which is very similar to the story line of Inside Out. I was making A LOT of progress understanding my episodes until I lost my job and had to move. I’m trained in CBT and REBT, which are great at rebuilding your irrational beliefs into true statements that can lead to higher self-esteem and self-worth. With the IFS I was able to concentrate on what contributed to my emotions and thoughts “hijacking” (an episode) my defense mechanisms to survive.
It’s so difficult from the client view point not being able to receive the therapy I need due to restricted resources (travel, finances, health insurance). I live in WV, which isn’t one of the state’s you have listed with resources. It’s also difficult from the view point on the therapist side due to limited coverage with health insurance to pay for therapy. I’ve attempted to help/refer others and they couldn’t get help due to the insurance coverage. There are going to be chronic issues with this diagnosis until it’s more commonly known in the health field and health insurance will be open minded to more treatment facilities.
To sum up it is extremely hard to not want to give up due to the sheer episodes and any other diagnosis(es), such as depression, PTSD, anxiety, DID, etc. I have questioned myself more and more with my ability to be resilient. I want nothing more than to do what I love (be a therapist) and be the happiest I can be.
Amanda, I see that you are in WV. We are also. My daughter has been diagnosed and we are looking for help from someone who understands this condition. Are you practicing in WV?
Hello Amanda and Martha,
I am in WV also with a 14 yr old daughter diagnosed in Feb.