This blog post is dedicated to those who are currently struggling with vestibular issues. I get it. I deeply understand. I have been in the dark trenches of despair, living day after day with chronic dizziness and dissociation, obsessing about it, and feeling afraid I would be disabled for life. My life slipped from my hands, and I struggled for a long time alone.
During this time of deep suffering, I remember making an important promise to myself. If I were to heal and overcome the chronic physical and emotional pain I was experiencing, I promised I would share my story with others and commit to being a support figure and ally for anyone struggling with vestibular conditions. I made the promise, but at that time, I didn't know if full healing was possible or if I'd ever reach a place to offer guidance to others. I am so proud to say I achieved full recovery and feel blessed every single day for my healing, and to have the tools and resources I do now (more on my recovery in the blog post to follow).
My Vestibular Journey: How it Started
So, I want to share with you my story. While it is unique, just as each of our vestibular journeys are, maybe you will find some similarities and connections to your own, and potentially even receive some hope.
For some background, my vestibular system has been a little “off” since I was born. I struggle with chronic neck misalignment (having torticollis at a young age due to a traumatic birth injury) and have undergone two surgeries to help correct my alignment and reduce pain. The lack of alignment in my neck, tight muscles, the trauma to my vagus nerve, and my sensitivities combine make me quite vulnerable to dizziness and imbalance.
My Vestibular Flare-Up
Fast-forward to 2020. One of the most difficult and destabilizing years for all of us. Alongside
the pandemic, I uprooted my entire life in Colorado and began living out of a suitcase traveling and house-hopping between places in Colorado, California, Hawaii, and Alaska (I lived in 22 different places total over a span of a year and a half!). While there was so much joy in this journey, my nervous system was seriously suffering, and I felt completely unsettled. I was not grounded. I lived in a state of hyperarousal day in and day out, and I believe this inner state of disequilibrium and emotional stress was the perfect storm for my vestibular issues to develop.
One night, during yet another move, I woke from sleep after having flipped over to my left side and found myself spinning internally for about a minute. I didn’t know it at the time, but this was my first experience of BPPV. (Learn more about BPPV with VEDA.) Already in a chronically anxious-aroused state, this vertigo episode completely shook my world. Thoughts flooded my mind: “Why did that happen? Will it happen again? How can I prevent that happening? Is there something seriously wrong with me??”
The Development of PPPD (Persistent Postural-Perceptual Disorder)
In the meantime, I completed a cross country road trip. My body did not adjust back to
equilibrium after the vertigo attack (ideally a healthy vestibular system does), and I developed a secondary chronic condition, PPPD. (Learn more about PPPD with VEDA.) While the initial acute spinning dizziness was over, new dreaded sensations took home in my body. Many of you reading this know exactly what I’m speaking to, but if it’s new to you…PPPD feels like an almost-constant cloud over you. It is the feeling of getting off a 12-hour overnight flight and feeling incredibly jet-lagged. It is intense brain fog. It is fatigue. It is feeling like you are rocking and swaying on a boat when sitting still in a chair. It is feeling tipsy and drunk when you are completely sober. It includes many odd sensations and sometimes shooting pains in your head. It is dissociation. It is a constant state of anxiety and fear. It feels completely destabilizing and debilitating.
I sought out the support of a neurologist, hoping to receive some answers, or at least reassurance as I was sure there was something seriously wrong with me. I completed a full work up, including an MRI of my brain. I received no official diagnosis and was prescribed a host of medications, including pain relievers, muscle relaxers, and migraine medicines, to begin that would hopefully help me feel better. I didn’t touch any. It didn’t feel aligned or like a long-term healing plan in the slightest.
At the time, I was living alone on the North Shore of Oahu, Hawaii - one of the most beautiful places on Earth, but my world was completely black. The days continued to blur and melt together. I felt so isolated and alone, suffering. No one around me seemed to understand what I was going through. I became fearful of driving, exercising, being away from the house, and socializing with others, all things I loved to do. My world continued to shrink into just a small cage of fear and darkness as I continued to live in daily disequilibrium, brain fog, fatigue, and dissociation.
In the Depths of A Vestibular Flare-Up
The pain and suffering in this space is not something I would wish upon anyone. Feeling just so alone, and without answers from doctors about what is wrong and how to heal is devastating. At the time, I was fully convinced this was the new me, and for the rest of my life, I would be disabled.
The worst of this time lasted about 8 months. I’m a spiritual person, and I believe that everything happens for our best interest – for our soul’s highest growth and evolution -- even when, especially when, it doesn’t feel like it. I believe we are given the exact challenges we need to learn important lessons in this lifetime and that we are always guided. While not exactly in a connected spiritual space during this time, I believe this guiding grace still
came to me when I happened upon some YouTube videos talking about neuroplasticity for
healing dizziness. Something intrigued me about this process. It was no longer about wanting others to provide answers and healing. It was not about being a victim to your symptoms. Instead, it was about taking the power back into your own hands and healing yourself. This concept became my guiding light for the rest of my healing journey, which I am so excited to share more about…
Coming Soon...Part 2: How to Heal
Look out for my next blog post all about my healing and recovery journey, including the exact tools like ERP, VRT, meditation, and type of yoga, that I found most helpful!
In healing, balance, and love,