
Introductions to Functional Neurological Disorders Patient-Provider Series. What to Expect?
Dec 25, 2024Teja Zeribi:
My journey with FND starts well before I was officially diagnosed....
WATCH VIDEO HERE
Like many people, as a kid I struggled with anxiety and undiagnosed adhd, that manifested as severe perfectionism and developed into obsessive compulsive disorder. At around 13, I saw a doctor for various physical symptoms that were explained as anxiety and I started therapy. 2 years later, at a follow up appointment with a pediatric specialist, my life turned upside down as I was rushed to the pediatric emergency room. While I certainly had anxiety, there was also an undiagnosed physical aspect that had been deteriorating for the past two years. With a heart rate in the 30s and an extremely low BP, I was rushed back into a room, attached to a million monitors, given many IV drips, on a 12 lead ekg virtually 24/7, and it felt like there were always at least three medical professionals in the room at any given time. This was my first exposure to hospital life, but I would soon be so accustomed to it that I knew the er nurses by name, where to put each telemetry lead, how to mute my pump, had my favorite floor to go to when inpatient, would ask for specific child life activities that they knew I loved, etc. For the next eight months, the hospital was essentially my home. But instead of processing and grieving the loss of everything to the hospital, I threw myself into school work which I did asynchronously. I didn’t process that while my friends were out doing choir concerts and swim team, I was getting a procedure done and needing help just to walk to the bathroom at 15 years old.
When I finally discharged, two days before the start of my sophomore year, I was determined to put it all behind me and forget about it. I dove back into swim team, theater, choir, neuroscience club, and songwriting. I ignored signs my body was still struggling: I was passing out about once a week and struggling with incontinence, but I had POTS and chronic urology issues, so who cared? Increasing in severity? I wasn’t going to let that stop me from signing up to travel with jazz choir. Covid happened. It was hard, but I actually did ok. Until -one of my medications caused a rare reaction when another one was added to the long list. Back to the ER I went, although it was more out of precaution because I wasn’t feeling that sick. Shockingly, they were very concerned. I was admitted, much to my protest. I felt an incredible amount of anxiety and trauma coming back to the place I had fought so hard to put behind me. Two days into the admission, I became unresponsive. My dad ran to go get the nurse, who sternum rubbed me, checked my vitals, and due to the continued unresponsiveness and low heart rate, called a code blue. A million people came running in. A few minutes into that, a seizure started. To this day, we don’t know if it was epileptic -which would make sense given my medication reaction causing seizures, or functional. They called the resuscitation team at this point, which was very traumatic for my parents. I woke up the next day in the pediatric neuro ICU, connected to more machines and meds than I could count. But by the time the afternoon rolled around, I was eating a burrito from chipotle, telling my mom I looked like Medusa with my eeg electrodes, etc. I went back to the general floor the next day. A couples days after that, home.
This was the start of my Fnd journey. The months and years to follow include everything from 30+ seizures a day, once going unresponsive for over four days, vomiting to the point of needing a feeding tube, the list goes on. But it also includes achieving 8 months seizure free, becoming captain of my swim, starting an awareness club at my school, performing with my schools theater department, and graduating Highschool with my class. It has been a long and hard ride, that has had its ups and downs.
Right now, I’m on an up, and I’m doing everything I can to sustain that. I am currently in the uk studying to get my masters in pharmacy. I also am the research coordinator for FND hope and corun and young adult support group for people all over the world with fnd aged 18-27. The purpose of this series is to highlight my experience with fnd and working with people with fnd, so others feel less alone in their journey, and providers get a better understanding of the patient perspective. When I was first diagnosed fnd, I felt so hopeless and alone. I am here to say: there is hope, and here is what has helped me. It’s hard, but it’s not impossible, and each person is worthy of recovery and symptom relief. I would not be where I am without the help of incredible clinicians, my family, my friends, and my will to fight. But everyone deserves the care and symptom relief I’ve received. Sadly Fnd care is still sparse. I hope, that through learning about what has helped through sharing my story, or joining the YA peer support group, that will help even just a little.
Disclaimer: Dr. Velazquez has not had the chance to review the above article for scientific accuracy, nor she is endorsing any type of opinion, comment, suggestion, product or treatment possibly mentioned. You are the sole responsible for the interpretation of the data shared by our Patient Collaborators or Personal Experts. Whenever in doubt you can contact directly the person who wrote this Blog Post article and/or you can report it to Science & Shamanism, LLC, Dr. Velazquez and/or her designees. We will always try to help! Within the limitations of our human existence and capabilities, considering scarce time and high workload.
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