To my memory, my first real experience with motion discomfort, or abnormal dizziness was on the bus in eighth grade; there were three buses parked in a row and I was on the center bus seated towards the front. The two buses on either side of me began driving away and I remember experiencing an immediate sense of dizziness and nausea, as if my eyes were darting in various directions trying to find a grounded object to focus on. I had always taken the bus, and this was a normal route, I had NEVER experienced this bizarre sensation before. I didn't think too much of it at the time, I dismissed it to being some sort of motion sickness and moved on. However, the sensation would come and go in the years ahead, becoming a more regular, uncomfortable feeling in my everyday life.
In my late teens, I explained my symptoms to my PCP, & gave physical therapy a try per her suggestion, to rid of potential “inner ear crystals” for a little over a month and a half and it was unsuccessful. Following this, I was sent to visit a local ENT and was told that with the description of my symptoms that it sounded like I had Meniere’s Disease, He said that this was the reason for the tinnitus (daily ringing in my ears, dizziness, headaches, etc) and suggestion a low-sodium diet, x-nay caffeine, and move on. I changed my diet slightly, as I was someone who already consumed a healthy well-rounded diet. Weeks later, nothing had changed and I felt the same, and I wasn't 100% satisfied with his answer, figuring there was no way I could continue to live and feel so uncomfortable day to day for the rest of my life. I was frustrated and for the first time began to feel trapped after having been told by two doctors that there was really nothing that could be done.
I wanted a second opinion after doing some research and visited a neurologist in my area. Several visits later and further exporation into my symptoms led to being told I had Vertigo and NOT Meniere’s. I had been diagnosed with Vertigo and Migraine Associated Vertigo. I was excited to finally have a doctor who seemed genuinely interested in getting to know more about my symptoms and thrilled to be told it wasn't Menieres (scratch that one off the list of possibilities). Unfortunately my doctor retired about a year after I began seeing him, without a successor in his place, so thus began more research to find a new doctor. I visited another neurologist locally and was less than thrilled; she missed two of my appointments, dismissed my described symptoms and I did not feel 100% confident in her abilities to help me. So, I took my records and researched elsewhere.
Fast forward to 2015: Six months ago I found VeDA and a doctor out of Boston specializing in Vestibular illnesses. Four months ago I ventured an hour into Boston. He put the Pulse Oximeter on my finger and a few moments later while discussing my symptoms he stopped me mid-sentence...“Did you feel anything just now?” he asked me. “Nothing more than my typical shortness of breath, why?” I asked (...I am ALWAYS short of breath!). He then told me that my blood pressure had spiked to 152- something that is completely not normal for a person simply talking at a seated rest. A very long story short, I was super impressed with the time he spent with me and dedication to getting to hte bottom of my absolutely UNNORMAL symptoms. Three weeks later, per his suggestion, I went to Boston for the Tilt Table test. After a 2 hour procedure consisting of breathing exercises, standing for long periods of time, a fainting episode, panic attack, and other lovely symptoms -- I have since been diagnosed with Vasovagal Syncope - meaning my body overreacts to certain stimuli; pain, stress, anxiety, uncomfortable sights, heat, and more.
Shopping malls, grocery stores, places with florescent lighting can cause sensory overload & tend to trigger these ‘attacks’. Often times I feel as though walking through a fun house the way my body perceives my balance and movement. I typically avoid department stores as much as possible simply because they make me uncomfortable. Places with large crowds also have this type of effect. It can be a scary thing to feel like you have no control over your body, but I am working on not missing out on opportunities because I’m scared over what my body might do or feel like; it’s a constant learning and growing process.
Heat is also a HUGE contributing factor to the way I feel. I am extremely sensitive to the temperature simply because of this disorder. I love the summer and the warm weather, however, the way it makes me feel is extremely uncomfortable & I often feel sick because of it. It’s not that its “hot” per say, it’s that I feel like I’m in a a fog. I get cold sweats, nauseas, and often get sinus headaches throughout my face. Many people don’t understand the way it makes me feel internally; I’m not just your average person complaining about the heat - I love the warm weather!
In addition to the heat, sweating and working out, something I LOVE had turned into something I dreaded for a bit. I became angry that I was unable to do something I loved, something that was good for me, my brain, and my body, because it made me feel so terrible. Over exerting myself - things like running, jumping, high intensity workouts were a challenge. I’ve learned to go at my own pace and work with a trainer weekly to keep me motivated and in-check. One of the worst parts about having a this type of disorder is the feeling of being trapped in your own body; the constant unease, tension, dizziness, nausea, and never feeling 100% amazing even when your life is otherwise. I often read stories from others with vestibular disorders who also share the same feelings of being a person with an invisible disorder. I look healthy on the outside, because I don’t “look” sick, but on the inside it is a daily struggle to refrain from complaints when you feel as though you’re in a constant battle against your body.
I am confident that I am getting closer to a solution, or at least achieving relief for the first time in a long time. I’ve been placed on various medications to try and regulate and lessen my daily symptoms, this process alone has been a roller coaster in itself. I am currently prescribed three medications to help keep my symptoms at bay, but I also face several side effects with one of those medications. Several medications have caused weight gain, weight loss, chronic numbness in extremities, withdrawal, headaches, fatigue, nausea, the list goes on. I look forward to the day when I am symptom & medication-free!
As of today, I’m continuing my journey to find a cure or to even just feel “normal”. In the next few years I hope to be medication-free and in-balance. I can only help that my story can help someone else who may feel similar feel like they aren’t the only one, especially someone my age. I am someone who is healthy, fit, active, young, and determined to bring these types of disorders into the spotlight to help myself and others get the treatment and normalcy in life that everyone deserves! As much as I have allowed my disorder to control my life in the past, I am making it a priority to live in the moment. Whatever happens, happens. Surround yourself with supportive people who will take care of you, and know what you need. Don't miss out on life opportunities for fear of what may happen because of your illness. Chances are things will turn out amazing.