A year ago, I did not know if I could function in daily life, let alone travel the world again. I was on medical leave from work and had to leave my doctoral program in Organization Development & Change at Bowling Green State University. My vestibular symptoms had me in a constant state of dizziness with vertigo episodes and head pain. I could not look at a screen without becoming so dizzy that I would fall out of my chair. I could not walk two blocks without veering and falling over. It has taken a year of different treatments, vestibular physical therapy, hard work, and crying to get me to where I am today.
As part of my doctoral program, there is a required international symposium in Europe. I was fortunate enough to be at a place in my recovery and treatment where I could embark on this big vestibular experiment! One of my assignments for the course was to write a critical reflection, and I chose to publish it in the VeDA (Vestibular Disorders Association) Blog in hopes that other vestibular patients could benefit from my travel experiences and reflections.
Before Travel: Preparation is Key
As this was the first extensive travel I had taken since my diagnosis, I felt excited and blessed to be able to go, but I also felt nervous about what would happen and how I would manage my symptoms. I did several things to prepare for a month-long adventure of traveling. I booked direct flights with the shortest travel distance and a meet and assist upon arrival with the airline. That way, if I had a vertigo spell triggered during the flight or arrived too dizzy from the 10-hour plane ride, I would have assistance when I arrived. I also flew out several days early and arranged to stay with a friend to settle, rest, and adjust to the time difference. I packed my vestibular toolkit with things I could use if I started dizziness or pain. I bought a foldable cane in case I got dizzy enough to need assistance. Emotionally, this was the hardest thing to pack. Sometimes, the feeling of your new reality hits harder than living with it.
During Travel: Do it, Dizzy!
Each day offered opportunities to test my vestibular system. I traveled on planes, trains, trams, metros, cars, autobuses, water taxis, and a canal boat! I had issues and struggled with dizziness and pain, probably more than I showed, but I got through all the program features. To help me manage my symptoms, I tried to get at least 7 hours of sleep, eat as healthily as possible with plenty of protein and limited sodium, and walk every day. Giving my body this functional consistency was essential as I experienced new situations and environments. Visual vertigo is one of my most significant symptoms. I used light-sensitive eyeglasses, requested fluorescent lights be turned down or off, and limited my screen time to mitigate symptoms. I also took breaks, finding a place to close my eyes and engage in grounding exercises. I used anti-nausea bands, ginger chews, and a nasal inhaler to help with the feeling of motion sickness in transit.
Amsterdam in the Netherlands was the first place I visited. After several recovery days, I started with one significant daily activity involving public transit and scaled up from there to allow myself to habituate and gain stamina. The city center was the hardest for me. There are bikes, cars, people, trams, and uneven-patterned cobblestones to walk on. Just add to the fun! My most memorable experience was when I was visiting the Anne Frank House. I had vertigo when ascending several sets of very steep stairs. I could not feel my feet; my head was spinning, and my heart was racing. Even though I had someone go behind me to help me, I got to the top of the highest stairs and was overwhelmed with the fear I was processing. I did my best to stay calm and take breaks, but this experience helped me to realize sometimes you just must get through it and do it dizzy.
My next stop was London, England, and it was easier for me as I had been there before and I was more familiar with the city, but I still experienced symptoms. I had days when I had to take several public transit forms and walk to our destination. One of the days, my dizziness had me too off balance after coming off the tube, so I asked a classmate to give me their arm and walk with me. I was happily escorted and appreciated the help. Other days, I decided to take a cab if I knew the journey would aggravate my symptoms too much. Sometimes, the best tool you have is a better alternative. During my time in London, my most significant vestibular victory was riding on the London Eye. I did surprisingly well and am glad I decided to take the ride!
My last destination was Paris, France, right in time for the 2024 Olympics. After my time in Amsterdam and London, I arrived ready to take on the crowds and extensive metro. I worked up to walking in the city and taking the metro alone. Since I was by myself, my anxiety increased as I became symptomatic, but I always had a plan and my toolkit ready to get me safely to my destinations. It was a surreal feeling that I could not walk two blocks only a year ago, and now I was walking alone in Paris. A highlight of my time here was attending an Olympic Equestrian event and seeing the Olympic Flame! I was utterly useless the next day, but I could keep traveling since I had planned in time for rest and recovery. It was essential to choose what was important, do less overall, and plan in rest to make it through my travels.
Reflections Upon Returning
On this journey, having spent so much time on public transport, I started to think of myself as a train and my health symptoms as passengers. You are never sure how many passengers will board, how many will board at a time, and how long they will stay with you. At first, you try to fight it, doing everything you can to get the passengers to leave the train, but that leaves you tired and off schedule. Eventually, you realize that you are not only the train but also the passengers you carry. Once you accept them, you can start to make peace with their presence.
I am glad to say that I not only met the challenges of traveling but also enjoyed the journey! It was real-world physical therapy, which you can only get by getting out there, seeing what happens, and adjusting as needed. Was it perfect? No! Did I prepare the best I could and learn along the way? Yes!
I wish you all the best in your vestibular journey and all the journeys you find yourself on with a vestibular disorder! Remember, with the proper preparation and mindset, you can participate in all life’s adventures! To help you on your way, I compiled a list of tips I found the most useful when traveling with a vestibular disorder.
By Heather Karwowski, MBA, D.ODC Student