
My current symptoms: I lack balance and coordination and often feel a disconnect between my head and my surroundings, even when sitting still. My vision is very unstable while moving; my eyes do not focus as well as they once did, and my brain seems to not process my vision as quickly, causing me to often stumble when walking, especially when turning my head left or right. Symptoms are greatly heightened in lower light conditions. A sudden change in vision by moving my head in one direction or another causes me to lose balance and stumble. Sometimes, there are also bouts of light-headedness and blurred vision when rising from a seated position. I also occasionally have 3-4-minute episodes where my vision frame flashes quickly up and down or right to left; however, they are rare. My eyes also have trouble focusing at times.
It should first be mentioned that I have never had what I consider to be great balance, but I’ve been active my entire life. For the past several years, from 2007-2018, I participated regularly in long-distance triathlon events while consistently averaging 12-15 hours of running, biking, swimming, and functional strength every week. I’m still active and workout 5-7 hours per week, and I still consider myself very fit. This condition has eroded my ability to compete in sports, as it impairs my swimming, bike riding, and running ability. My fitness also seems to be compromised with this condition. My body seems to be working harder for the same effort relative to the past. Over this period of time, I have improved my diet and taken care of myself well. There’s still room for improvement; however, I have no other considerable health issues.
A timeline of my symptoms and treatment to this point…
In November 2016, I woke up one morning with a ringing in my left ear. It’s never gone away to this day. It’s not severe and doesn’t affect my sleep. It has only slightly affected my hearing, which is still ok. This may be simply coincidental, but it was the first sign that something was wrong. My symptoms have only increased and become more frequent since this event.
June 2018 – I raced Ironman Boulder, a long-distance triathlon. I was well prepared for the event, but my body seemed to turn on itself early in the race, and I had to withdraw 110 miles into the bike ride due to exhaustion and dehydration. I had never finished an Ironman race before and simply did not feel like myself during or after the race. After this race, symptoms became more frequent and worsened over the next few months.
September 2018 – Visited my family practitioner. He referred me to an ear, nose, and throat doctor.
September 2018 – Visited Dr. Smith at Sarah Bush Lincoln. He performed a few tests and thought it was possibly Meniere’s disease but quickly ruled it out with simple test. He then ordered a hearing test, blood test, a balance test, and an MRI of my head/brain.
* Hearing test showed moderate loss of hearing in the left ear.
* Blood test was negative for various possible conditions such as MS, cancer, etc.
* The balance test showed a severe loss of inner ear function in my left ear. The right inner ear was near normal.
* MRI was inconclusive and showed no signs of tumors or anything abnormal.
In November 2018, the doctor released me back to my family practitioner with no solutions to my issue but suggested seeing a neurologist. I spoke with my doctor, who referred me to a neurologist.
December 2018 – Saw a neurologist. After some questioning and a review of my MRI, he concluded that nothing was wrong with my brain. I became frustrated and simply gave up for a while.
April – May 2019 — My symptoms slowly began to become worse and a bit more consistent. I decided to get suggestions from a friend who is a physical therapist. She referred me to a balance specialist.
May 2019 – (testing and evaluation)
* Performed hearing test – similar results to previous testing.
* Performed balance test. This time, the test showed a significant loss of inner ear function in the right ear as well as the left. Virtually no inner ear function is present in either of the ears.
Dr. Sanders diagnosed me with vestibular malfunction and referred me to a physical therapist who specializes in vestibular therapy. He was optimistic that my condition could improve but told me there was no cure. He also told me my issues were likely genetic.
June 2019 – The therapist was very optimistic about improvement, stating that 95% of patients see at least some improvement. Four weeks of vestibular therapy did not help, and I was released. I can’t say that it’s gotten any worse, but it definitely didn’t get any better.
July 2019 – Call for an appointment with Dr. Sultan., an environmental health and allergy specialist. Conducted numerous tests to determine if I had a food allergy or mineral deficiency. Tests concluded that I had no food allergies or sensitivity; however, other tests performed found that I had a significant magnesium deficiency, slight hypothyroidism, and low testosterone levels. Treatment for all of these deficiencies was done for 3+ months with no positive results. As of March 2020, I am no longer taking thyroid medication or topical testosterone. I am still taking magnesium supplements (500mg/day).
March 2020 – I had a telemed consult with Dr. Sanders to recommend a course of action to prevent the progression of my symptoms from getting worse. He recommended I see a physical therapist trained to treat vestibular function, specifically my vision stabilization issues.
Summer 2020 – 6-week Vestibular Physical Therapy course with Dr. Ford. Daily gaze and balance exercises were prescribed 60 minutes daily (two 30-minute sessions). Results had very minimal to no improvement of my condition.
2020-Present – No change in condition; however, I do believe my condition has worsened, but offset by my physical and mental activities acting as therapy.