My Binocular Vision Dysfunction Journey
On September 5th, 2020, my world turned on its head.
I was at a “lights out” indoor rock climbing event in a mostly dark gym, wearing a headlamp as my main source of light. I was working on an overhang type of route, where you’re climbing both up and backwards, meaning that holds are usually directly above you.
Me on a similar route just before the incident
I made a large move without double checking above me, and rammed my head directly in a large hold, right where a baby’s soft spot would be. My vision went white, I saw stars, and I clung to the wall, waiting to regain my vision as a searing pain coursed through my head. I had hit my head before and felt similar things, so I figured I’d have a headache the rest of the night and sleep it off. I continued to climb and belay, even as my vision struggled to unblur. I didn’t think much of it.
Alas, I did not sleep it off.
Over the course of the next month, odd symptoms starting coming and going. The main one was dizziness and vertigo. There would be occasional nausea, and rarely, migraines. I never directly attributed these to hitting my head, as we were in the middle of covid; we’d had it several times with other lingering and odd symptoms, tensions were high, and the world was in an overall strange place.
As the months went by, the dizziness never went away. It became normal to feel like I was walking on a floor made of marshmallows. Seemingly small tasks started turning into mountains. I had a lot of trouble with long hallways, floors with patterns, and especially grocery stores; the long aisles and repeating lines of the lights and ceiling tiles made my head spin. I would have trouble pumping gas and simply standing still.
These unceasing feelings slowly lead to a growing, constant state of hypervigilance and panic. I would often feel the symptoms coming on, and then immediately be hit by an adrenaline dump which would spiral into a panic attack. I’d have panic attacks while shopping, while driving, and sometimes, walking from one side of the house to another. My legs would feel extremely weak, as if they were going to collapse beneath me. My heart would pound, feeling as if it were going to explode. The surge of adrenaline would worsen my dizziness and “soft floor” symptoms, and so they because a vicious feedback loop. It was always worse when I was in a position I simply could not leave…in line at TSA, speaking in a meeting, driving on a highway with no exits.
I pulled back on social outings and driving for fear that something embarrassing, or worse, tragic might happen.
I began seeking help in 2021 as Covid was seemingly winding down and I started telling my story to doctors. The rock climbing incident was a long-forgotten tidbit, something I never equated to my issues, and I’d simply recall all of the symptoms I’d had in the last 6-12 months. Doctor by doctor, test by test, I began collecting clean bills of health. I saw ENTs who saw no issues with my hearing. I saw vestibular specialists who put me in spinning chairs, testing my vision and inner ears, who could find nothing out of the ordinary. I saw specialized chiropractors who commented on my strange stance but said that overall they felt I was healthy. Appointment after appointment brought me no closer to any answer, and all the while, I suffered in relative silence.
How do you tell your loved ones that you are dying on the inside while trying to desperately wear a mask, putting on a brave face at required functions?
I reached my lowest during a visit to a neurologist…an appointment I had fought hard to even get in the first place. He glanced me over, handed me a questionnaire about depression, and came back in the room and told me he wanted me to go on SSRIs…no discussion about my actual symptoms, just get on anti-depressants and get out of my office. It was at this point that I lost complete faith in the medical community and decided that I was done with doctors. I was livid with anger at his callous manner and felt truly disposable.
I decided my next course of action would be to start seeking out PTs who dealt with balance issues. I was able to get appointments at FYZICAL in Plano, and the staff there were a breath of fresh air. They had me do all sorts of PT, and the hardest exercise was steadying myself on a moving, suspended platform…it was marshmallow floor on steroids. One day while doing this exercise, I felt a physical sensation in my brain, right where I’d hit my head. It was a click, almost like a light switch flipping. Up to this point in the day, my symptoms were bad, and worse while doing PT. Instantly, every symptom disappeared. I finished my PT, walking out, feeling like my “old” self for the first time in over a year. The rest of that day was a revelation…a glimpse into a possible future. If I could gain my “old self” back, even for an afternoon, it had to be physically possible to do that again.
With a newfound hope, I started googling my exact situation, and wound up at at the YouTube channel of the Vision Specialists of Michigan, with videos talking about a condition known as Binocular Vision Dysfunction (BVD) with loads of personal stories about symptoms and treatment from happy patients. The gist was that all of my symptoms might be rooted in an eye issue, a misalignment causing my brain to receive confusing visual data and not knowing how to process it. This could lead to slight blurring and a loss of balance due to the eyes working at different angles and not converging at the same distance. The patients said they traveled to Michigan to be diagnosed, and most came away with “prism glasses”, lenses with micro-prisms embedded in them that force the “bad” eye to move to the correct convergence angle and work in sync with the “good” eye. The patients had all sorts of stories, but most of those started with some sort of accident that involved a violent hit to the head or neck, often accompanied with a concussion. This was my lightbulb moment! Realizing that my rock climbing accident was likely the genesis of this issue, and understanding the ripple effect of symptoms a mTBI can cause explained everything I had suffered from since that night in 2020.
Taking this new knowledge, I started researching BVD and found a group in Utah that does a live MRI while you complete brain-teaser type tasks, as well as visual tests. This allows them to come up with a specific PT protocol for your specific needs. I talked to their doctor over zoom, and was told (surprise surprise) that they’d be ecstatic to take my $20,000 for the pleasure of their services. There was no way I could afford that out of pocket, but I had some reinforcement that maybe I was healable with PT. I also noticed that much of their PT was vision based. I decided to see if there were eye doctors who specialized in post-concussive vision issues, and discovered OVDRA and the FCOVD organisation for Vision Rehabilitation. I saw that you can find a doctor at their website (https://locate.covd.org) and discovered I had a certified doctor half an hour away…the flight to michigan was cancelled!
I called Dr. Lindsay Berry at the Vision Advancement Center in Frisco, TX and came in for a comprehensive post-concussive exam. Dr. Berry was the first doctor to meet me where I was…low, scared, feeling like I was never going to get better. She was kind, and gentle, and listened to my full story. She was patient with me through my quiet desperation and ran me through a series of eye tests, specifically focusing on my convergence abilities. She quickly discovered my right eye was deficient and weak and came up with at-home PT for me to do. She also prescribed me the same type of prism glasses the folks in Michigan had been advocating. I wasn’t satisfied, though, and I told Dr. Berry I didn’t want to wear special glasses for the rest of my life. The folks in Michigan made it sound like once you had the glasses, you were “fixed”…but reading reports from patients, they said they had to keep increasing the strength of the glasses over time to stay functional.
Dr. Berry said that her end goal was total healing…the glasses were just the first step to help me feel functional again, and the real work would come in the form of visual PT…brock string, eyepatch eyechart reading, convergence training, and more. She said that she didn’t want me wearing the glasses any longer than I absolutely needed to, and it was bouying to have that reinforced. We weren’t taking the easy way out, we were methodically attacking the problem with PT, but using the glasses as a booster to get me started.
When the glasses got delivered, Dr. Berry had me walk up and down the hallway without them. The floor felt like marshmallows, as always. I put the glasses on, acclimated for a few minutes, and repeated the hallway test. I felt the sensation of solid ground under me for the first time in a LONG time, perhaps even since that one great day at FYZICAL. I knew I was on the right path immediately.
The plan worked. It took about a year of wearing the glasses, often at first, sparingly later, and sometimes in a “break glass in case of emergency” sort of way to get me through a tough day. I worked on my PT and could feel my eye getting stronger every week. Now, I wear the glasses perhaps 5 minutes a month at most, only as an occasional reset. I have shifted away from the PT work to looking at stereograms on a regular basis to keep my eye convergence trained and strong. I even have some downloaded to my phone that I can look at if I’m having a day where my eye feels weak or “off”.
No, prism glasses weren’t the end all be all solution like many online tout, but that’s ok. They were the ladder I needed when I was so deep in the pit that I couldn’t see light at the top. They gave me hope and a sense of healing that I had searched for for years.
Today, I have mostly good days. Sometimes if I’ve gotten bad sleep, or drink too much caffeine, I can feel my right eye reverting back to his naughty ways…lifestyle maintenance is important! Doing some stereograms or throwing the prisms on for 30 seconds helps and I can move on with my day. What a change from 2021!!
I hope that by sharing my story, I can shave years off of someone feeling the same way I felt…perhaps they were in a car wreck, or fell off a bike and things just haven’t been right since. I wish I could have read my testimony 5 years ago and not lost 2 full years of my life to BVD, but I’m so grateful for the folks in Michigan spreading the word about BVD on YouTube, and for doctors like Dr. Berry who have focused their careers on helping people recover from debilitating eye issues.
If you are suffering from dizziness, migraines, nausea, or neck pain and haven’t been able to find the root case, please find a doctor with the COVD link above and get checked for BVD. Even if you don’t have it, you will have checked off a major possibility for yourself, which is what the diagnosis process is all about.
If you are in the throes of BVD, I only wish to tell you it can get better and you can regain your life, even if it takes a while. I wish you all health and success in your journeys and hope this article has been helpful for at least one person out there looking for hope and answers.
-Scott