By Carol Rexroad Cannon
After a hiatus of seven years, I decided to see if vestibular rehab could again improve my quality of life. My husband and I felt we were managing my symptoms and energy level (aka spoons) relatively well. However, we wondered if additional therapy could be helpful, so we decided for me to give it another try.
I had my first experience with vestibular rehabilitation therapy in Fall 2016 after a severe attack of vertigo due to vestibular neuritis. I ended up in Lexington (SC) Medical Center for five days. Providentially, the supervisory physical therapist on my floor, Dr. Melanie Franke (DPT), was a trained vestibular rehab specialist. She led me through a vestibular rehab therapy program. At the beginning, I could not walk ten feet without a walker or hiking poles, even in my own home. In addition, I couldn’t drive. Twelve weeks later I was freely walking in my home and at work. I still used hiking poles in crowded or noisy situations, but my mobility had increased tremendously. Furthermore, I was able to drive to work and the store. I could even shop in the store without feeling off balance. Overall, it was a very positive experience.
However, I still had residual symptoms. I was very sensitive to what I called sensory overload – noisy environments, crowded places, ceiling fans, bright lights, and odors from the kitchen at work. I got overwhelmed in meetings, where discussions went back and forth among various people and could become heated. I had difficulty concentrating for a period of 2-3 hours. I still had to sleep deeply every afternoon for an hour in order for my brain to relax, recharge, and reset. This was six months after I completed the first round of vestibular rehab.
Dr. Franke had moved, so I sought a new vestibular specialist. Via the VeDA website, I found Dr. Richard Clendaniel at Duke Medical Center. I set up an appointment with him, and he was able to make a diagnosis – Persistent Postural Perceptual Dizziness (PPPD). It was a brand-new diagnosis, having just been recognized by the medical community. Dr Clendaniel devised an additional exercise tailored for me. I did it regularly, and my sensitivity to sensory stimuli decreased. However, I continued to need to limit my activities, take a daily nap, and plan carefully for occasions when I needed to be in complex environments. Since this was before telehealth was widely used and Duke was a five-hour drive from my home, it was not feasible for me to see Dr. Clendaniel regularly. So I communicated with him a few times via email and phone, but soon went on living my life, sharing a position at work with my husband. The two of us managed my PPPD symptoms relatively well for the next four years until we reached retirement age.
Three years ago, we retired to Hendersonville, NC. We spent a year settling into retirement and the area. My brain took a while to get acclimated to the new setting, but after a while we began living an active life. We went hiking on area trails, volunteered with various organizations, and traveled regularly to Washington, DC to visit our daughter and her family, including our grandbaby. Still, we wondered if I could improve a bit more. My husband and I felt we managed my condition well, but there were activities that were still difficult for me and left me feeling fatigued and dizzy. These included going out to eat with a group or engaging in more than six significant activities over the period of a week. More significantly, we found that I generally had a meltdown after spending five days with our daughter’s family, including our eighteen-month-old grandson.
At the beginning of this year, I attended a few sessions of the VeDA Medically Retired Online Support Group, and several members commented that they still found vestibular rehab helpful. So I decided to look into taking vestibular rehab classes again. Duke was still a four-hour drive away, so seeing Dr. Clendaniel on a weekly basis did not seem reasonable. Once again, VeDA’s “Find a Clinician” directory became a tremendous help. Through it, I found AVORA Balance and Dizziness Center in Asheville, founded by Dr Kim Fox, which was only a 50-minute drive away. My husband and I agreed it was worth a try.
The results have been amazing. Several features of AVORA Health have been especially helpful. First, every clinician at AVORA Health has a doctorate in physical therapy and is certified in vestibular rehab. Second, each appointment is one-on-one, generally with the same physical therapist. In my case it’s been Dr. Brittany Hedges. Therefore, the focus is on my specific condition, rather than a larger class which addresses general concerns. I’ve learned that this is especially important in treating vestibular disorders.
At the first session, Dr. Britttany listened to my vestibular history and ran a battery of tests to see what I might need to work on. She also asked me to set SMART goals of what I wanted to accomplish. SMART goals are Specific, Measurable, Attainable, Relevant, and Time-Bound. Having the goals was helpful in three ways: It gave her a direction to determine what I should work on, and it gave me motivation to work on these goals. It also gave me a sense of accomplishment when goals were reached.
I quickly learned that there have been major advances in the treatment of PPPD in the seven years since I saw Dr. Clendaniel at Duke. In particular, vestibular specialists have made changes to the basic gaze stabilization exercises I learned eight years ago. (In reviewing written instructions, I discovered they are now called Vestibular-Ocular Reflex exercises.) These changes enhance the strengthening of the vestibular nerve and the development of new neural pathways. One change was that the rate at which I shook/nodded my head was greatly increased. Another change was that rather than staring at my thumb, which is at a fixed distance from my eyes, I now gazed at a small X on the wall. With an object other than my thumb being the focus, the distance can be adjusted from arm’s length to 6-10 feet to 100 feet. Other complexities were added as I progressed, each designed to challenge and strengthen my vestibular system. My husband and I were surprised at the differences these made in my being able to more fully participate in noisy or busy settings without being literally thrown off balance.
Dr. Brittany also taught me grounding exercises to help calm my brain when I’m feeling dizzy or lightheaded. I practiced them and I have used them in various settings, such as standing in a long line or sitting in a long meeting. They’re also useful when the family dinner table gets noisy. She also had me practice progressive relaxation and centering exercises.
After seven weeks of regular sessions and follow-up exercises at home, Dr. Brittany offered another possible vestibular rehab program – GyroStim training. The GyroStim is a device that is designed to help people with various neurological and vestibular conditions. AVORA Health is one of 30 facilities in the US that has one.
The GyroStim is an interactive system that simultaneously challenges your brain and the visual, somatosensory, and vestibular pathways. Friends who have seen a 35-second video of me using it say it looks like a Tilt-A-Whirl ride. That sounds frightening to someone who has problems with dizziness, but it is used in a very controlled manner. The results have been phenomenal. In particular, it has helped me build my endurance in challenging situations.
When I began this third round of vestibular rehab therapy, my husband and I were not expecting a great change in my symptoms. We felt we were managing my symptoms and energy level well, but simply wondered if it was possible for my situation to improve. We ended up being amazed at the results.
My simplest goals were being able to play peek-a-boo with our grandson for 30 seconds and to hold my head back to gaze at the top of a tree without getting dizzy. I did both of those for a minute within two weeks. Another goal was to attend a vestibular rehab session and then go out to eat at a new restaurant. That was accomplished within a month. A mid-range goal was to assist my daughter, her husband, and their 20-month-old when they came home with their newborn baby for a week without me having a meltdown. Afterwards, I could write, “HOORAY! I MADE IT 12 DAYS!” A pipedream was that I would be able to manage on my own if my husband went away on a two-night retreat. The equivalent of that was accomplished when he came down with COVID and I took on all his household duties and errands in addition to mine for 10 days. It is an understatement to say we are delighted with the results.
In conclusion, I have found vestibular rehab therapy helpful along my vestibular journey at three stages. The first was at the onset of vestibular neuritis in August 2016. It helped me be able to walk and drive again and to resume many activities. The second was a year later, when Dr. Rick Clendaniel was able to attribute my additional symptoms to PPPD and give me additional exercises to address them. The third was earlier this year after a seven-year break. I am now able to live life more fully and engage in more activities without feeling dizzy or off balance. I am truly grateful that my life is more fully rebalanced.