Events & News


Seizure star: Mia Montgomery, author of "On the Floor Again"

Seizure Star: Mia Montgomery, is the author of "On the Floor Again." Her book is a wonderful memoir that describes the road she traveled with her diagnosis of PNES, the ups and downs and how she has learned to manage the disorder in a way that works for her.  It has helped many living with PNES to read her book, realize they are not alone, and to learn from her unique experience as both a therapist and a patient.

It is for this reason that she has been chosen as the Northeast Regional Epilepsy Group December newsletter Seizure Star.  


Tell us about yourself, Mia

I live in Jefferson City, Missouri with my husband, 3 dogs and a cat. I am also proud to be called "Mom" by two adult children that we fostered as teens. I am very lucky to be able to work full time in the field of foster care & juvenile justice, which is my passion.

Before my current job, I was an independent counselor in private practice, working directly with teens in the foster care & juvenile justice systems. However, after my diagnosis of PNES, I had to leave my practice for a more steady job with health benefits. I have been employed in my current position for almost 4 years now, and I love it. Of course, there was a great sense of loss in giving up the practice I had worked hard to build. However, I gained a new career with some excellent benefits. My employers have been kind and caring enough to work with me when my seizures happen, and have made some accommodations to help me manage to balance my personal health and work responsibilities.

I know mine isn't the experience of many people who have PNES. Some people can only handle part-time work or have found that the flexibility of working for themselves is best. Others can't manage to find or keep work and are forced to go the route of applying for Social Security Disability. For me, I knew I wanted to hold a full time job if at all possible, so I was thrilled to find a position in my field that allowed for me to have a health/work balance.  So, for all those out there who are afraid they may never work again after their diagnosis, your new work life might look drastically different from your pre-PNES life, but there is hope!


How did psychogenic non-epileptic seizures enter your life?

My PNES seizures, like many others', hit me out of the blue. One Saturday morning, I was hanging out in my living room, and suddenly my whole body started shaking violently.

That initial terrifying seizure was followed by more than 20 additional seizures in the next 24 hours. I stayed in the hospital several days, and by the time I got out, I had experienced over 100 seizures. I don't remember much from those first few days, except the fear & exhaustion. My body was sore all over, and my emotions were frayed. My family & I were confused, and scared, and very unsure what life would look like after that.

However, one good thing that came out of that hospital stay was a diagnosis from the neurologist, who told me pretty definitively that he believed my seizures were non-epileptic, and tied to stress. He referred me for a video EEG & psychiatric treatment. Subsequently, I learned it takes an average of 7 years for patients with PNES to receive a correct diagnosis. So, I consider myself lucky to have gotten on the right track in the beginning of my journey.

It took several months and a revolving door of doctors to help me find a treatment plan that worked for me. In my book, I describe the various positive and negative experiences I had with medical personnel, and what I call the "medication merry-go-round."  At first, I was shocked to find so few doctors who know anything about PNES, and I was dismayed that there seemed to be few, if any, resources even in my entire state.

Finally, after a few long years and thousands of dollars spent on different specialists, tests, medications, and treatments, I was able to find competent doctors who care about me as a person, and have worked with me to manage my symptoms.

Currently, I feel like I'm in a pretty good place with my treatment. I still experience seizures, but I've learned a lot about treating and avoiding them. For me, learning my triggers has been hugely beneficial in helping manage my seizures. Over time, I learned that I have seizures in response to both internal triggers (emotions like stress and anxiety, as well as hormonal changes) and external triggers (heat, lack of sleep, pain). By knowing and avoiding (or at least anticipating) my triggers, I can avoid some of those situations when I used to be caught unaware by a seizure.

In addition, I've found a few treatments that help me personally. Focusing on self-care and stress management is huge for me. I try to listen to my body and learn its cues in order to prevent overload & eventual seizures. Sometimes this means taking a warm bath, or a nap. Other times it means listening to my body when it signals that I am nearing my tolerance levels, and I need to stop. Of course, that can be easier said than done for someone who still sees themselves as "just as capable" as I was pre-PNES. Learning to respect my limits is an ongoing process for me.

Also, I would wholeheartedly recommend mindfulness meditation to anyone who has PNES. Meditation really helps me connect my thoughts with my body, and also helps me manage stress. In fact, I recommend mindfulness meditation for everyone. I have even considered starting a mindfulness group in my area once things get back to normal. For anyone who wants to get started in mindfulness meditation, I would recommend the Ten Percent Happier podcast, as well as checking out a free or inexpensive app to help you learn about the practice. There are also tons of videos on YouTube for beginners.

In addition to self-care and stress management, I take a few prescription medications which have helped me reduce the frequency of my seizures, without too many side effects. However, I have talked to enough people with PNES that I believe medications are extremely personal and specific to individuals. What works for me may not work for others. Everyone is different in how they react to certain meds. Some people don't like to take meds at all. Others feel like medication really helps them. So, I think it's a personal choice.

Finally, I have a great health care team. I highly value my mental health care professionals, and I know that for me, it is important to see a psychologist & a psychiatrist regularly. My primary care physician is also really helpful, and I feel heard when I see any of these professionals.


What prompted you to write your book "On the Floor Again?"

I decided to write my book, On the Floor Again, for a few different reasons. The idea came to me first because I had started taking pictures as a way to track my seizures. In those early days, it was hard to keep track of when & where I had a seizure and try to connect them to triggers. Did I have 7 seizures yesterday? Or was it 8? How many have I had this week? Have I had more or less than last week? Those were questions I tried to use to help me keep track of my own experience, but I didn't have a great way to do that. I had an app on my phone, but inevitably it was clunky to use, and I didn't have enough clarity to enter in things like exact time, duration, and triggers for seizures at the time they happened. I ended up relying on my memory, which was muddled by medication.

So, as an alternative way of tracking, I started taking photos immediately after I regained my composure, in order to have a "memory jog" of exactly what time & where I was when I had each seizure. By simply scrolling through my photo album, I could count the frequency, look at the time stamp, and better remember where I was & what I was doing prior to the seizure.

After several months of tracking this way, the idea occurred to include them in a book about PNES. I was still in my first year after diagnosis, and I had realized there are so few resources for people with PNES. During that time, I spent many days scouring the internet for videos, articles, organizations, doctors, therapists and other resources, and I just didn't find what I really felt I needed. I found information from a clinical perspective, but I found few full-scale accounts from patients like me, who were trying to navigate this confusing diagnosis and treatment options. On the Facebook groups I joined, I saw the same questions asked over and over from newly diagnosed people of all ages & backgrounds.

As a therapist, I had experience with trauma training, and I understood the disorder from both a clinical and patient perspective. So, I decided I could share my experiences, and hopefully my story could help others feel less alone in their own journeys. The tag line for my book is "A Raw Look at Life with Non-Epileptic Seizures." I felt in sharing my story that I needed to be brave enough to be raw, authentic, and honest, not just about the disorder, but about my own journey that ultimately led me to diagnosis and treatment. In telling my story, I shared the pain of deeply personal tragedies, unfiltered and frankly unflattering photos and episodes. I felt if I wanted to reach readers, I wanted them to know that I've found myself on the floor over and over again, just like they have. However, through it all, I tried to balance the darkness with rays of sunshine and humor. I'm not afraid to talk about all the hard stuff, but I also try not to take myself too seriously. In the end, I hope my book brings some humor & comfort to those who are battling dark days like I have.


What have been some of the results you have observed after you published your book?

Since publishing my book last year, I was thrilled to attend my first PNES conference in NYC. The conference was a wonderful experience and I would love to have the opportunity to attend the next one as well, whether in person or virtually. I was also invited to write a chapter for another book Non-Epileptical Seizures in Our Experience, edited by Dr. Reuber, Dr. Rawlings, and Dr. Schachter from Oxford University Press. Becoming a published author has been a lifelong dream of mine, so I am excited to have been able to achieve that goal. 

However, perhaps my favorite part about authoring this book has been the ability to connect with other PNES patients. I have received overwhelmingly positive feedback on the book. Many readers have thanked me for sharing my story, and related similar experiences.  They have laughed and cried along with me, they've felt the same fears, frustrations, questions and hopes that I think we all feel. I know I'm by no means an expert in the field. However in the book I tried to offer some thoughts and lived experience to help readers with their own struggles. To me, the greatest compliment comes when a reader says my book made them feel like they are not alone in their journey.


To purchase Mia's book:


Thank you very much, Mia, for answering our questions and for all that you have done, you are our Seizure Star in this current issue!!


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