Community Forum Archive

Patient Doctor Communication PNES

Thu, 10/24/2019 - 09:00
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.

Comments

Hi Momonamission, Thanks for

Submitted by Anonymous on Fri, 2019-10-25 - 09:21
Hi Momonamission, Thanks for sharing your son’s story, it sounds like you all have been through a lot. We are sorry to hear you all have had such negative experiences when dealing with his doctors, but it sounds like you've found a healthcare team that is willing to work with your son to find the best treatment for him. It’s important that you all continue to follow-up with his healthcare team (that you’re comfortable with) and if he experiences any changes in behaviors, side effects and symptoms. If you all feel you cannot talk openly with his healthcare team, or you feel that you aren’t working towards the same goals, it may be time to get a second opinion.For information regarding second opinions, please visit: https://www.epilepsy.com/learn/diagnosis/you-and-your-healthcare-team/second-opinions or contact our Epilepsy and Seizures 24/7 Helpline: 1-800-332-1000 contactus@efa.org, where a trained information specialist can connect you to resources,provide referrals and additional support. epilepsy.com/helpline  Seizures can take on many different forms and affect different people in different ways. Learn more about seizures and & PNES, here:https://www.epilepsy.com/learn/about-epilepsy-basics/what-happens-during-seizure https://www.epilepsy.com/learn/diagnosis/imitators-epilepsy/psychogenic-nonepileptic-seizures-pnes-cause-diagnosis-andA key part of managing Epilepsy or PNES is knowing how it can affect a person's independence and day-to-day needs. Visit our independent living pages here: https://www.epilepsy.com/living-epilepsy/independent-living  to learn more about resources that are available & when help is needed. You all may want to consider keeping a diary, or a journal. My Seizure Diary: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diary is a great tool for managing medication, identifying & tracking seizures, other symptoms, therapies, recognizing triggers and health events that may affect seizures and wellness, which can be shared with healthcare team. Create a seizure response or action plan: https://www.epilepsy.com/living-epilepsy/toolbox/seizure-forms which is a helpful tool for those around your son to understand what to do if he has an episode. Learn about potential risks and safety tips, here: https://www.epilepsy.com/learn/seizure-first-aid-and-safety/staying-safe It’s common for those who are in caretaker role to feel overwhelmed. It’s important to remember that you are not alone, and it is just as important to make sure you’re taking care of yourself as well.https://www.epilepsy.com/living-epilepsy/parents-and-caregivers  It can be helpful to connect with other parents who may have similar experiences, to ask questions, find & give support to each other, by visiting:  https://www.epilepsy.com/living-epilepsy/parents-and-caregivers/parents-helping-parents  

I’m a licensed clinical

Submitted by Patriotrehab on Thu, 2019-10-31 - 00:10
I’m a licensed clinical social worker and certified rehabilitation counselor as well as a person with epilepsy. I have experience treating clients with PNES become symptom free and the therapeutic approach that I use is not cognitive behavioral therapy even though I understand that is what is promoted most. The reason why is because it’s been researched the most and because managed care is willing to pay for it the most because it is a time limited service. Most people who have PNES become symptom free in less than a year regardless of what psychotherapy methodology that is used if they are motivated to be healed. I understand your story as I was almost misdiagnosed with PNES by my new epileptologist and many other neurologists have been perplexed over the years about my seizures, but never went so far as this last one to make such a claim. He at least had me undergo a 7 day VEEG and that proved to him that I had epilepsy and no PNES. I hope that this new doctor that your son is seeing is willing to try an extended VEEG as that is the gold standard for differential diagnosis when epilepsy and PNES are in question. I understand the frustration, anger, and fear on a personal level because the truth is that many doctors don’t understand seizures and their arrogance can lead to SUDEP if they misdiagnose. I also disagree with calling something that is not a seizure PNES if it is psychological, but it’s currently a work in progress and something that many advocates are working towards changing. Here’s a helpful website about nonepileptic seizures that even includes a documentary with others and their experiences. https://nonepilepticseizures.com/ I don’t agree with everything that the website has on it based on my experience treating people with PNES, but it’s based on the experiences of other professionals. 

I’m a licensed clinical

Submitted by Patriotrehab on Thu, 2019-10-31 - 00:21
I’m a licensed clinical social worker and certified rehabilitation counselor as well as a person with epilepsy. I have experience treating clients with PNES become symptom free and the therapeutic approach that I use is not cognitive behavioral therapy even though I understand that is what is promoted most. The reason why is because it’s been researched the most and because managed care is willing to pay for it the most because it is a time limited service. Most people who have PNES become symptom free in less than a year regardless of what psychotherapy methodology that is used if they are motivated to be healed. I understand your story as I was almost misdiagnosed with PNES by my new epileptologist and many other neurologists have been perplexed over the years about my seizures, but never went so far as this last one to make such a claim. He at least had me undergo a 7 day VEEG and that proved to him that I had epilepsy and no PNES. I hope that this new doctor that your son is seeing is willing to try an extended VEEG as that is the gold standard for differential diagnosis when epilepsy and PNES are in question. I understand the frustration, anger, and fear on a personal level because the truth is that many doctors don’t understand seizures and their arrogance can lead to SUDEP if they misdiagnose. I also disagree with calling something that is not a seizure PNES if it is psychological, but it’s currently a work in progress and something that many advocates are working towards changing. Here’s a helpful website about nonepileptic seizures that even includes a documentary with others and their experiences. https://nonepilepticseizures.com/ I don’t agree with everything that the website has on it based on my experience treating people with PNES, but it’s based on the experiences of other professionals. 

Another note, as part of my

Submitted by Patriotrehab on Thu, 2019-10-31 - 00:21
Another note, as part of my difficulty with my new neurologist... I contacted many of the places that had done EEGs on me and asked them to give me an electronic copy of my EEGs. Some provided that to me on disc and others downloaded it to a USB with a reader file. It’s a process, but yes you can get copies of some of the EEGs if the place has kept it because like you said some doctors question the credibility of other neurologists. I now make it a practice to get an electronic copy of my EEGs and MRIs etc. right after they are done because I may need them in the future. There is usually no charge for them as long as you tell them that you need it to ensure “continuity of care”. I also make sure to monitor my medical records for accuracy and get copies before relocating and before going to a new doctor. 

Join Our Newsletter

Stay up to date with the latest epilepsy news and stories from the community.