The Breakdown in Patient/Doctor communication in Psychogenic Non-Epileptic Seizures (PNES)/Convulsive Syndrome of Unknown Origin (CSUO) as seen by a Mother:
In 2018 the National Alliance on Mental Illness estimated that 1 out of every 5 people in the United States experiences serious mental illness. Nonepilepticseizures.com states that roughly 1 in 8 new patients referred to an epilepsy specialist turn out to have PNES. Numbers vastly fluctuate to how many people have been diagnosed with PNES, however, wiki estimates it to be between 2 to 33 people out of every 100,000. The WHO estimates that around 50 million people worldwide have Epilepsy.
As a mother, I can give the medical community some insight as to why there is a breakdown in communication/treatment/diagnosis acceptance in the patient/doctor community with psychogenic non epileptic seizure diagnosis.
1. Because we have access to the internet. The internet is a wonderful thing. However, maybe not for a doctor who thinks he/she knows best & is unwilling to listen to a patient objectively. We are communicating. In forums, on blogs, in Facebook groups, Instagram, you name it....we’re in it. We’re not liking what we see. We hear from one another about new tests, new studies, different opinions of other doctors, genetic testing and compare our symptoms/our loved ones symptoms to others around the world and compare that with what’s being done in our situation. We want the doctor who listens & tests further! Along with that internet access comes a world of knowledge on when PNES first came into light (if you look deep enough/I can’t recall off the top of my head, but, I do believe it was 1999). That doesn’t seem like that long ago. We need more research! We need more statistics on who Cognitive Behavioral Therapy has cured. We want their stories! Because, I can’t find them in the forums. We read about focal epilepsy, Alice In Wonderland Syndrome, POTS, MTHFR genetic mutation and by the end of it....we wonder....why YOU, the medical community, didn’t do more tests. In that moment, you lost a patient’s trust that you could have helped.
2. We wonder if you got it wrong. A whole community, across the globe wonders. I have not found a single shred of evidence that supports the diagnosis of PNES. I’m not saying that it isn’t out there. If it is, show me. Make these statistics available for us. The credibility to the theory of psychogenic non epileptic seizures is in question without definitive test analysis results available to the public. I don’t mean the EEG results, I don’t mean the mental illness to conversion disorder ratio. One study shows that MTHFR genetic mutation can be found in up to 50% of the population in some ethnicities (which is why it is generally dismissed in the orthodox medical community) as also the reference to serious mental illness in the United States is 1 in 5 (which is why mental health relation to seizures is questioned by so many of those diagnosed). When I say we want numbers, we want to know about FMRI, blood work analysis, genetic testing, Spect testing, etc. Where are those test results or why don’t we have access to this testing?
3. If it IS psychogenic, name it something else! How insulting to name a condition psychogenic non-epileptic seizure disorder. A. Do we call Bipolar Disorder, Depression, Anxiety or ANY other mental health disorder Psych anything? It’s a slap in the face to mental health patients. Do we call Focal Epilepsy (Non-Epileptic) just because you can’t always SEE it on EEG? No. Because sometimes you can. (I’ll get more into that in a moment.) Do we name a condition that the we are being told is not a (TRUE seizure) a disorder with literally the word seizure in it? No wonder patients are confused! If you need to call it something, call it what it is. Convulsive Syndrome of Unknown Origin. CSUO. I’m not calling it PNES anymore. Sorry.
4. We know of multiple Epilepsy Syndromes, Metabolic Disorders & many many many disorders that have been discovered not long and were hardly thought of until recently. Why, oh, why is asking for more research met with opposition? Especially if a patient has done long term CBT & it didn’t work!
5. All the doctors are not on the same page, and we’re thankful. It was so extremely hard to find a doctor to listen to my son. Years of his life stolen only to have an EEG finally show focal abnormality years later. (How many others have not yet been caught?)Then, have an epileptologist tell me that a. He questions the credibility of the doctor who read the report (by the way WHY do we not have a universal system to share EEG in such a technologically advanced society!) b. That my son was intubated because PNES patients can subconsciously hold their breath c. That at 4 am when he had a seizure in his sleep that he must have been in pseudo sleep. d. When he nearly drown in a swimming pool that sometimes there doesn’t need to be outside stressors. e. That incontinence is common in PNES. The medical community MUST recognize the absurdity of these claims!This is NOT the information readily available to us on the internet. In fact, we’re reading the opposite.
6. Stop telling us PNES is NOT dangerous! (See #5) I have watched my son bend his head so far back that (Opisthotonos) that I fear he may one day break his neck! I’ve seen him get aspiration pneumonia from convulsions while eating that was so bad he spent a week in ICU. I’ve seen him be intubated for respiratory distress. I’ve seen him turn blue. I feel like I’m screaming at the medical community shame on you!
I’ve written this for my son. I’ve written this for everyone afraid to speak up. I’ve written this because IF you’re right, you still have A LOT more research to do and SERIOUSLY need to do a better job at patient/doctor relations with this diagnosis. If you’re wrong, I refuse to let my son be a statistic while you figure it out. We drove out of state for a doctor that would at least do more tests. They were kind, knowledgeable and willing to study. However, it is still a work in progress to cure my son.
Thank you for listening.