Vestibular problems are a life changer, but you must be thankful for what you can do and don't give up hope.
My vestibular ordeal started like any other day at my cabin in the New Mexico mountains in July, 2018. My wife and I took a 4-wheeler ride in the mountains, like we have done many times over the last 40 years, going up to altitudes of 10,000 feet. After returning to our cabin at 8500 feet in the late afternoon, I didn’t feel quite right with a little dizziness and I was a little off balance. We went to bed and when I awoke the next morning, the off balance feeling was bad and continued to get even worse as we drove the 5 hour trip home. As the day progressed, I was unable to stand because of the off balance feeling, even when holding on to the car door. I did not experience a spinning sensation as many people do.
Upon arriving at our home town, we went to the emergency room but I was unable to walk inside without being held up by someone on both sides. The emergency room doctor thought it could possibly be a stroke so I was taken to the hospital by ambulance. I was given a full exam including a CAT scan, MRI, heart tests, as well as being tested for BPPV. After two days, and the determination that I was not having a stroke, I was released from the hospital and started outpatient therapy at the balance center for 4 weeks, along with at-home therapy exercises. I progressed from a walker to a cane to being able to walk without assistance, but continued to feel off balance all the time. I was advised to discontinue the outpatient therapy and the home exercises in mid-September. At this time, my diagnosis was Left Unilateral Vestibular Hypofunction.
From that point until now, I have reached a plateau in my vertigo – not getting any better and having some days that were worse than others. I started doing the home therapy exercises again but don’t feel that has helped much, if any. I have not been able to tie the days when the vertigo is worse than others to any specific event. However, it is always worse when I am fatigued. I have always been physically active, and this fatigue is extremely out of character. I played multiple sports in high school, football in college, and have hunted my entire life, in addition to being in really good physical shape for a man of 70.
Sometime in September I wanted to equalize the pressure I was feeling in my ears so I held my nose and blew. This made me black out for approximately one second but I was sitting in a chair and did not fall. I still am not sure what caused the black out.
In December, I met with Dr. Brian Rogers at Baylor Scott & White Ear Institute in Dallas. He diagnosed me with BPPV, did an Epley maneuver, and told me he felt that would take care of the problem. After 3 months, several more Epley maneuvers, and no improvement, I contacted Dr. Rogers again and provided him with all the test results that were done in my hometown, which he did not have access to during my first appointment with him. After reviewing my case again, he called to tell me that he did not feel there was anything that could be done to alleviate my symptoms and hopefully over time my brain would compensate for the vestibular loss.
As of this date, I have been off balance every day for close to a year. I must be careful with stairs and bleachers and darkness is not my friend. Fatigue is still my enemy and my symptoms are always worse when I am fatigued. But I feel the vestibular problems are the cause of the fatigue. It feels like I spend a lot of energy trying to fight being off balance. I also feel like this vestibular loss has affected my memory and reasoning abilities. I sometimes have difficulty making decisions and sometimes have difficulty finding the right words to use. I have not yet returned to the high altitude of the cabin to see how I feel up there, but plan to try that this summer.
In short, this has been a life changer for me. I feel lucky that I am functional and have not been confined to a bed as reported by some sufferers. I will continue to try any reasonable suggestion that might help, and I will continue to hope for the brain compensation. But I feel that I reached a plateau in improvement about 9 months ago and have seen little improvement since then. I feel the compensation I have experienced has just come with time and my advice is to keep on with your daily activities. If your problem is similar to mine you are just going to continually feel off balance and need to continue doing all activities you are able to do and don’t give up hope.