A long time ago we were frustrated by the lack of an affirmative statement by professionals about the fact that PNES are not "voluntary" in any way. Some of us are accused of being in control of or even faking their PNES. It took a while but I worked with the Epilepsy Foundation many years ago and received this statement. See the text I highlighted in yellow.
30% Have PNES, not Epilepsy
Around one third of all people who visit epilepsy centers are ultimately diagnosed with Psychogenic Nonepileptic Seizures (PNES). Think about that statistic. And here is another statistic. The average time between a mis-diagnosis of epilepsy and PNES is 7 - 10 years but can be even longer! This is unacceptable of course, especially with the vast knowledge of PNES we have now and very reliable video EEG testing.
The average epilepsy center has little or nothing on their websites about PNES. Why is this? How is it that information on something that a large percentage of their patients have does not appear on their site?
Common PTSD Causes Resulting in PNES (additions welcome)
Sexual abuse in childhood
Emotional abuse in childhood
Physical abuse in childhood...
Death of a parent in childhood
Near death in adulthood due to combat situations
Near death due to car accidents in both childhood and adulthood
Any traumatic event, especially in childhood, that has a real or perceived threat to life
My wife, who worked so hard to overcome her PNES, has realized that there should be no confusion when it comes to the description of these seizures. She told me this morning that they should be called “Trauma Seizures”. This is due to her experience as well as trauma being the most common origin of PNES.
I have written that there is an effort to downplay the severity of PNES by some. They wish to call them “events”, “episodes” “spells”, etc. They are none o...f these. They are caused by trauma, and as such should be known for that. Let’s all keep the truth going.
No more downgrading of PNES into something it is not. It may make it easier for treatment providers to do so, but it doesn’t help those who suffer from PNES, which is a result of trauma.
There are still professionals who support the idea that PNES, or Trauma Seizures, are either voluntary or due to a lack of "coping skills" or even fake.
Only the truth is what is important.
The National Association of Epilepsy Centers (NAEC) has responded
Ellen Riker responded to my final email attempt, which is good news. It was going to be my final attempt before I took other steps to reach out to the individual centers in a new campaign. Please see her email response below and my response to hers.
Ellen Riker’s email response:...
I apologize for not getting back to you sooner. Jen did tell me about your call and forwarded your email to me in January. I appreciate your email from yesterday and your specific requests, which I will forward to the NAEC Board.
The NAEC Board did review your request from several years ago to post your handout and link to your website. Your request sparked a good discussion and exploration of training programs and other activities related to non-epileptic seizures occurred. We appreciate your continued interest and I will bring your email to the attention of the NAEC Board, which meets in March. At that time the Board will decide whether to add information to the website on non-epileptic seizures and will fully respond to your questions.
National Association of Epilepsy Centers
600 Maryland Avenue, SW
Washington, DC 20024
My response to her response:
I accept your apology, and would ask you to pardon me for my frustration. It can be very difficult for patients and advocates to not receive prompt replies, even if they are not the ones hoped for. Your association and member centers are uniquely positioned to help PNES survivors due to your being the usual first point contact and diagnosis. This is the reason for our continued interest in your participation.
We look forward to hearing from you after the Board meets. We are hopeful that they will agree to this opportunity to make a huge impact in PNES information and treatment options being more available to all.
Thank you very much,
Very touched by Alanna Sterling's experiences with PNES and childhood trauma. (Thanks Lorna for the link)
National Association of Epilepsy Centers (NAEC) Update
I have made a final attempt to get a response from the NAEC. It’s frustrating that the group that can do so much to get the word out and share our resources has decided to ignore us. I would have at least hoped for a reply that they were not interested in helping us versus being ignored. Patients and their advocates never deserve that, and it makes me suspicious that there may be some negative motive behind it. If not, then why the lack of support.
People are suffering and worried and confused and need to better understand PNES and what treatments are available. I’m calling on the NAEC to join with us now and provide our resources for the up to 30% of their patients who end up being diagnosed with PNES.
Emergency Rooms and Verbal Abuse
When ER personnel accuse you of faking your seizures or not properly controlling them from happening or any other such nonsense, this is actually a form of verbal and emotional abuse. If you like, please feel free to let me know who they are and where they work so that I can send them our PNES information handout. I will NOT at all get angry with them or reveal your name.
You can also do this yourself. Check out the resources handout information under “Notes” in the side bar of this page. Either way, we need to contribute to stopping this from happening, which it still does often.
PNES are a symptom of a disorder. The disorder is usually PTSD but can also be dissociative disorder or conversion disorder. The disorder is caused by extreme trauma. PNES are produced as a protective device, to help us when the pain is too great and life threatening. When the trauma/abuse stops or ends, the ungrieved pain is stored inside. At some point later, sometimes many years later, the unresolved trauma, due to specific triggers, appear again in the form of flashbacks (traumatic memories). Once again, the PNES are used to protect us, but this time from flashbacks which are very realistic vs. actual trauma. Therefore, the treatments for PNES are those that are used in treating PTSD.
Patients Have Knowledge That Professionals Don’t
***The Mount Everest Test
Answer all five questions to see why professional treatment providers need to value their patient’s knowledge. See how you do and I think most will see my point when you get to question #5....
Is it cold at the summit of Mt. Everest?
Is there a dangerous lack of oxygen present at the summit of Mr. Everest?
Is Mt. Everest located in a country other than the United States?
Should you have some general training in mountaineering before attempting to climb Mt. Everest?
What feelings did you experience when you reached the summit of Mt. Everest?
Child Abuse = Human Evil
There has been much written about human evil and I would point to Scott Peck’s book, People of the Lie, in which he states that those who are evil project their evil onto others, often children. This would include emotional, physical and sexual abuse of children. This abuse of children is a common cause of PNES, first occurring during the abuse, and later during flashbacks. We no longer have to wonder about PNES and what they are and how they happen. ...We know, and we have for a long time.
In seeking effective treatment options for those who are experiencing PNES, a symptom of PTSD or dissociative disorder, we must always be aware that the cause is often childhood trauma. And that trauma includes beatings, verbal attacks and sexual abuse.
I will clearly state that child abuse is perpetrated primarily by adult men, and that these men are evil. There is no sickness, no disorder or other excuse for their actions. They are destroyer of lives. Our society needs to do more to protect children and eliminate the abusers as threats. Since the death penalty is too controversial in general, and opposed due to religious or moral grounds, my view is that in order to protect children from sexual abuse we need incarceration for life without the possibility for parole.
Larry Nassar, who was just sentenced to up to 175 years in prison, is a recent example of a man who is evil. Fortunately he will never get out of jail or abuse another girl again. David Allen Turpin and Louise Anna Turpin, who were charged with torture and child endangerment, including chaining their children to their beds for years, are evil.
We need to see that treatments for abuse are critical, but prevention is the key. And we can’t prevent that which we don’t see or acknowledge.
Silence From the National Association of Epilepsy Centers (NAEC)
Well, it looks like they are not interested in helping us spread the word about PNES or replying at all. Epilepsy centers see patients regularly who actually have PNES (as many as 30% of patients seen) and they have a long history of mis-diagnosing patients. This has been well reported and has led to an average of 7 years passing before the correct diagnosis is made. Please understand that there is no need for t...his to occur as there is ample information on PNES and also the tools needed, namely Video-EEGs.
I have tried repeatedly to help them better understand PNES and what patients need for treatment, etc. and their lack of concern is no longer baffling to me. I believe that there are several factors that make PNES difficult for them to face. The first, of course, is their reluctance to fully embrace the fact that epilepsy centers mis-diagnose people. This opens them up to potential legal issues as well as reputation issues. Second is that PNES often involves sexual abuse of children which is difficult for them to face.
Whatever the reasons are they are certainly not living up to past commitments they made to me as well as refusing to provide essential links to key websites, books and other resources. If you are receiving treatment from an epilepsy center make sure they have experience with PNES, as the NAEC guidelines require.
If the NAEC board of directors does not want to provide the information I have provided for their newly diagnosed patients, I would like to know why. With all the suffering that patients with these seizures experience, is it really too difficult to put up a link on their website? At least they should have the courtesy to reply. I would hope for and expect a Yes, and would even accept a No, but what I don’t deserve is to be ignored.
Still no response from the National Association of Epilepsy Centers (NAEC) to my 11/21/17 email and my 1/1/18 phone contact to follow up. I’m trying to reach Ellen Riker, the Executive Director, to see if they will consider the PNES handout information sheet (see Notes to the left). This will help all 230+ epilepsy center members to better inform their patients who are diagnosed with PNES. I’ve had a very hard time trying to get them to provide more information/links on their... website.
I would like answers to the following questions:
Will you provide the handout that I created with the support of Lorna Myers, Ph.D. and Selim Benbadis, MD?
Will you post a link to Lorna Myers’ website and Facebook page?
Why do you only have 2 search results for PNES on your website when as many as 30% of your patients end up being diagnosed with PNES?
If they will not respond to my offer of help for their patients, I will consider contacted all of the member centers directly. I’ve had problems many times over the years with professional organizations refusing to help us spread the word on PNES, and I’m very upset by this. If they are not going to help, what is their motive for not doing so. More on my theory on that soon…