Although this may sound over dramatic, I would often remind myself that "it is just my ear," and "I am still alive."
I can only assume that if you are reading this story, you have somehow been touched by a vestibular disorder. As I begin to share my own personal story, I want to emphasize that although we may have different symptoms, everyone’s symptoms are similar in that they are strange and difficult to describe. I emphasize this point because as I was dealing with my own personal vestibular illness I was always looking for someone with my exact feelings, and searching to make sense of and to validate and confirm my symptoms and my feelings. It can be a very lonely and terrifying place when you are unable to find doctors who fully understand or unable to find medical terms that describe your exact symptoms and experiences.
My dizzy spells began in the spring of 2011. I was never someone who had gotten dizzy or light-headed before, so I cannot overstate how extremely frightened and nervous I was. Then, one evening while I was taking a walk, I became overwhelmed with dizziness or something that I couldn’t quite explain at the time. I knew only that it was a strange feeling in my head. As it was a Saturday, I waited until the morning and then went to a Medical Center. I had no idea how to explain or properly articulate what I was feeling. I knew only that something was wrong, something was off. And although I wasn’t able to fully describe my symptoms, the doctor diagnosed me with labyrinthitis.
Prior to this, I had never thought about the inner ear, how it operated or what it controlled in the body. Thus began my journey into vestibular research. Although I began to feel better over the next couple of months, I never really mentally recovered from what I had experienced, and I remained with a heightened sense of awareness regarding my body and my senses.
My second, more intense and significant, vestibular episode occurred in December 2012. For a few weeks leading up to this second episode, I had been having some strange sensations and feelings. Then one morning it hit me hard. It was as if something inside of me “‘broke” – again. I was severely dizzy, and this time I was continuously dizzy for about five to six days with no relief. I was dizzy all day and all night and nothing I did or took lessened the symptoms.
Throughout this time and for over a year I would feel off after drinking my morning cup of tea. It was difficult for me to enter a store or mall as it would make me severely dizzy. I felt odd and strange in the shower or in the dark at night. When walking, I felt like I was floating and lost my sense of stability and gravity, and I had this pulling sensation as if my head was being pulling backward or downward.
I made an appointment with an otolaryngologist, who promptly diagnosed me with Meniere’s disease. I underwent hearing and diagnostic balance tests, as well as a CAT scan and an MRI. I was surprised to learn that there is no real, fool-proof medical test to definitively diagnose an inner ear problem, but that it mainly involves ruling out more serious or life-threatening illnesses or conditions. This only contributed to my overall sense of complete anxiety and paranoia about my health: not ever being 100 percent sure of what was wrong with me.
I have always been someone who worried, especially about my health, but it had and has never prevented me from doing anything or going anywhere. I considered myself a very stable person, mentally and physically. The impact of an inner ear disorder on your life and ability to feel like a secure, stable individual is extremely difficult to articulate. When you are already someone who worries or can be anxious at times, this specific type of “‘illness” or condition is difficult to manage.
Vestibular problems are such that they seem to coincide with feelings of anxiety, and one of the most difficult things to work through is separating your anxiety from your vestibular problems. Your entire system is off. Something vital to how you operate and exist in the world is broken or damaged or compromised. It is impossible to fully articulate how and what you feel. Besides dizziness, the most common symptom that everyone expresses, all the other feelings or sensations you experience are so difficult to fully grasp and explain. They are slight sometimes, and yet are so all-encompassing because they get to the very essence of who you are as a person and they impact your entire bodily system, your entire life. It is impossible to ignore, and yet impossible to ever fully explain.
For me, it is important to not only share my experiences, but to also to tell you how I healed. It began with the motivation to strive for a good, solid, healthy life. I found the very process of looking for solutions helpful in dealing with my situation. One of the most important decisions I made was to seek an opinion from yet another doctor, who not only did not think I had Meniere’s, but who in turn sent me to the Rusk Institute in New York City, where I was able to find a vestibular physical therapist and psychologist.
Over the next few months I combined my treatments, working on both the physical and mental aspects of my condition, and I was finally able to begin the healing process. During my vestibular physical therapy treatments, I spent much of the time asking questions and going over all of my symptoms, which I kept a running list of. My physical therapist had a replica of the inner ear and we methodically went through all my feelings and sensations and discussed what labyrinth might be damaged. By making these connections between what I was feeling and where the damage might be in my body, I started to focus on that area rather than feeling scared and nervous all the time by this mysterious and strange condition. In a very literal sense, while I was in the middle of a dizzy spell or when I was feeling off I would say to myself and others that my ear was bothering me. This helped me deal with it, and helped others understand it better, even if they didn’t know exactly what I was feeling. Removing the mystery from it allowed me to gain back some control.
Another very significant aspect of my recovery was vestibular exercise. One of the scariest aspects of a vestibular problem is the utter lack of control one feels. A huge benefit of vestibular exercises is that they allow you to be in control and to pinpoint various motions that make you feel dizzy. When I would make myself dizzy by walking and turning my head side to side or turning my head while focusing on a stationary object such as a letter in the middle of a checkerboard, I would actually feel empowered and strong, as these exercises allowed me to recognize the vestibular problem.
During my treatment it was equally important for me to see a vestibular psychologist to have my feelings and anxieties validated. I learned how my feelings can become physical, how an inner ear weakness can be exacerbated by anxiety, and how, ultimately, my general anxiety can intertwine with my inner ear problem. Some of my self-soothing techniques included holding my ear when I was feeling dizzy or off and repeating certain phrases that I had learned, such as “anxiety can feel really horrible but it won’t hurt me,” “feelings are just feelings,” and “I may feel anxious and nervous, but I can get through this situation.” Although this may sound overdramatic, I would often remind myself that it is “just” my ear, and that in the end I am still alive.