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Rough River

By Kevin, a dizzy patient

My name is Kevin and I'm an extremely active fifty something living in the D.C. area. On Thanksgiving Day 2016, I woke up lightheaded or dizzy. At first, I didn't think much of it and dismissed the feeling as either a virus or a bit too much bourbon from the previous night. I went about my daily routine hitting the gym, work and busy family life. After a week or so when the symptoms did not improve, I started getting concerned and anxiety accumulated.

I'm no stranger to stress and anxiety since I'm a small business owner and have a very busy family life including twin teenagers. Not to mention the holidays were approaching when we typically host our family on Christmas Eve for the "Feast of the Seven Fishes" the hard way. Everything home-made, no catering help. For our large extended family--about 32 but who's counting? Me.

In addition, I am someone who values excellent health, not easily accepting minor interruptions like coughs, colds. I’m very pro-active about preventative tests and annual wellness appointments. I guess I’m a bit of a hypochondriac. I usually freak out at any perceived health issue.

After several weeks, the dizziness was starting to become more intense and seemingly debilitating. The more intense, the more stressed I became. A vicious circle of doom. At this point I am thinking my life is ruined and I better contemplate heading to the long-term care disability facility. Drastic but true reactive thoughts.

In order to mitigate my perceived hopelessness, I went to see my family doctor who promptly sent me to have an MRI of my skull. More stress. The results were negative for a brain tumor, thank God. That was a bit of relief for my stress level but I was still dizzy. Now comes the tricky part. What type of specialist should I see next?

First stop was an ENT who quickly recommended a Videonystagmography test aka VNG used to check balance. I thought this was odd because I was not having any balance issues. When asked to describe my dizziness, my reply was always the same: Feeling lightheaded, like I just stepped foot off a roller coaster ride of twists, turns and loops. It was not a room spinning dizziness. Also, any eye movement exacerbated the dizziness sensation.

I completed the VNG test which was not pleasant! It indicated that my vestibular system was normal. The audiologist noted that it was borderline abnormal though. More stress.

After reviewing the test results and scan, the ENT doctor thought that it was an inner ear issue that would resolve on its own. He indicated that it could be a virus or some other balance nerve interruption too complicated to even think about. When I inquired how long it would be until it got better, he wasn’t certain but thought no more than a few months. I also asked if there was any medication that could help with the symptoms. He was pretty stern that I should avoid any medications that could suppress brain activity like Xanax, diazepam or even over the counter Meclizine as it could delay recovery.

Since the diagnosis and prognosis were nebulous, I decided to seek another opinion, I saw another ENT specialist. After reviewing all my tests, he thought the cause was related to inflammation in my neck or cervicogenic dizziness. He was not convinced it was a virus or any inner ear nerve related condition since my symptoms were not intense enough causing vomiting or major imbalance. He suggested I see a vestibular physical therapist to help speed rehabilitation. He recommended Danielle Gross specifically.

When I met Danielle, I was immediately impressed with her enthusiasm and empathy. After performing a thorough exam, she noted signs and symptoms of an inner ear deficiency and recommended a course of vestibular physical therapy for faster improvement.

We started twice a week for the first month and then would re-evaluate. The therapy was both challenging and a learning experience at the same time. Apparently, in order to get better, we had to get really dizzy first. So, I drank the Kool-Aid. In the first few sessions, I learned about "vestibular isolation", "vestibular hangovers" and "vestibular patience". The last one is simply patience because the therapy was not a silver bullet and would take time.

In concert with therapy, I decided to see a vestibular neurologist for another opinion because I was experiencing other symptoms. Extreme fatigue, sensitivity to noise, smells, and on one occurrence, momentary vision loss and eye pain. I saw an ophthalmologist who referred me to a neuro-ophthalmologist. To my surprise the neuro-ophthalmologist diagnosed me with a vestibular migraine and recommended a migraine diet along with taking a few specific supplements for six weeks. More stress.

After this opinion, I decided to see another neurologist, whose opinion was that it was an inner ear issue that should get better with time. He suggested that the migraine symptoms are a result of the inner ear deficiency. By this time months and months had gone by and I still had not been able to get a clear diagnosis of my condition. More stress.

At this point I realized that stress and anxiety had become my most troubling issue, trumping the dizziness. It really wasn't the dizziness sensation causing most of my pain and aggravation it was the stress of not knowing exactly what was wrong. I was freaking out because I had no control despite doing all I could possibly do to solve the puzzle. I decided to make a change and focus on doing everything I could to reduce my anxiety. I was already hitting the gym every day and mountain biking a few times a week. Since this wasn't enough I turned to meditation and mindfulness. I started reading mindfulness books to get ideas and understand my brain's response to all this turmoil. Questions I pondered were, "Why was I so reactive to any health issue like I was physically facing an angry, hungry lion and certain death?" My fight or flight system was ridiculously active. I learned that any thoughts, self-stories and responses to my sensation of dizziness was causing way more problems stress-wise than the actual dizziness! This was enlightening and really made a lot of sense. Acquiring the ability to dismiss any secondary negative thoughts about my condition was my new quest. It made such perfect sense. If I could be calm, cool and collected, I could face this issue and anything else with a clear mind.

After almost a year, I feel better and am getting back to working full days and juggling work and home stuff like I used to. But I do feel different, the new normal I guess. I have noticed that at times the dizziness has subsided, and when I do feel it, it’s less intense. So, it seems it is easing. I have hope that I’ll wake one day like that day last November, and my head will be steady and sure.

I came up with a metaphorical description to describe this experience:

"I was floating on a nice comfortable raft down the calm river of life. Suddenly, the water opened and I was plunged down a whirlpool of fear and total discomfort. After a time, I resurfaced with my raft. The river is a bit rougher but I am still floating."