Living with Chronic Vestibular Dysfunction

I am about seven weeks out from an acute vestibular neuritis. From a clinician’s point of view, this is a textbook case of acute vestibular syndrome that I have seen hundreds of times. This time, as the patient, my experience has been predictable in some ways, and hard to explain in other ways.

The first thing we do when we see a “dizzy” patient is to try to get a clear understanding of their symptoms to make a correct diagnosis. They often have difficulty finding the right words to describe some of the sensations they experience.  As far as making a diagnosis, I knew within fifteen minutes of onset that I was suffering from an acute vestibular neuritis on the right side.  Looking back, I fit the typical description of two to three days of constant vertigo, followed by persistent disequilibrium and disorientation. I will take this opportunity to try and describe some of the symptoms that don’t fall neatly into categories of vertigo, disequilibrium, or lightheadedness, and some that do.


Description of Symptoms

In my earlier post, I described the acute vertigo.  With gradually decreasing intensity, when my eyes were open the room looked as if things were constantly moving from left to right.  This correlates with the left beating nystagmus I was experiencing. There is no visual symptom related to the fast phase (beating to the left), but during the slow phase of nystagmus to the right, the room visually followed my eye movement.

I learned that the vertigo eased up with my eyes closed, and that diazepam was very helpful in allowing me to sleep through most of the first 48 hours. The constant sensation of movement lasted about one week, but I had still had recordable nystagmus in darkness up to three weeks.


Visual Blurring

The ongoing symptoms after the first week are unchanged, but are slowly reducing in intensity. The most obvious is the visual blurring with head movement, known as oscillopsia. During the first couple of weeks, I only had clear vision when my head was still. Over time and with therapy, this has improved to where it is only noticeable with fast head movement to the right, and in the car on bumpy roads. I simply cannot keep my eyes focused on an object in these situations.


Sensory Conflict

I had one scary situation in a parking lot. I did not drive for one month, and started with a few days of just circling my neighborhood. My wife and I decided to go to lunch, and I would try my typical 10 minute work commute. As I pulled into a parking space in the plaza right across from my office, I experience a very disorienting sensory conflict. At the exact instant my car came to a stop, the car next to me started to back out.  Normally, in this situation, my brain would rely on my inner ear to make the quick judgment as to whether I was moving, or the other car was moving. Because I was not getting useful information from the inner ear, I could not tell which one of us was moving. I slammed on the brakes and freaked my wife out a little bit.


Loss of Balance

I am fine as long as I have a target to focus on. I can even run on a treadmill if I stare right at a number or symbol in front of me. If I turn my head while walking, I veer off center. Throughout the day, I have numerous, brief moments of imbalance. I catch myself and have not fallen, but I fear that my luck my run out. I tried hiking a couple of days ago, and working my way down a rocky slope was a bad idea. I am not ready for that yet. I also tried to walk on a floating dock surrounded by choppy water. Bad idea.


Hard to Describe

I have had a few sensations that defy clear explanation, but I will try. When my eyes are closed, and I move my head quickly, there is a sensation that I can best describe as feeling if here is too much liquid space around my brain. It feels like my brain is “sloshing around” in my head. There is occasionally an odd sensation of “pulling” in the back of my head when I move certain ways. I cannot reproduce it at will.

I suspect I have a mild case of right posterior canal BPPV. Inconsistently, but on several occasions, I have experienced a 10 to 15 second burst of mild vertigo shortly after rolling on to my right side. If I open my eyes, there is a visual sense of downward vertical movement, which I suspect indicates I have an up-beating component to my nystagmus.



I have been incorporating rehab exercises into my daily activities, with an occasional dedicated session to working on balance. I got some helpful tips from the Physical Therapist that I refer my patients to for vestibular rehabilitation. After recommending vestibular exercises to many patients over many years, I realize that the exercises I demonstrate are a lot more challenging to a person with a vestibular deficit. Now, I understand!


About Alan Desmond

Dr. Alan Desmond is the director of the Balance Disorders Program at Wake Forest Baptist Health Center, and holds an adjunct assistant professor faculty position at the Wake Forest School of Medicine. In 2015, he received the Presidents Award from the American Academy of Audiology.


  1. Thank you for this post. This is the first time that I have seen anything that truly describes what I am going through. My vestibular issue started 4 years ago. After almost four months of phyical therapy I reached my current state which is constant and is as you described. Energy is a major problem, expending most it just standing and walking. For the last two years I have become a full time Caregiver to my wife who is in the advanced stages of bvFTD, which consumes the balance.

    My question? Does this ever get any better. Also how do you make your primary physician understand the true effects your condition

  2. Very interesting experience, that resonates with mine (March 2014).
    How are you now (March 2018) – any residual effects / impacts ?

  3. Alan, thank you so much for sharing your experience. I often worry that we treat our dizzy patients in a way that seems kind of routine. Your experience helps remind us about the true impact this type of event has on an individual person’s life. I hope you will continue to share this unique insight.

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