Binocular vision dysfunction…..what you need to know. I am sharing my personal journey with this.

Settle in, this may be a long post. This is very personal to me, and I am sharing my story with you all because awareness is needed very badly.

In August of 2022, I had a significant vertigo episode. It hit out of nowhere, I have no underlying health issues whatsoever. The day before I had vertigo, I noticed a lump on my head, lower occipital bone right above my neck. It popped up really fast at work one day, and by that night it hurt to lay my head on my pillow. My plan was to go see primary care 2 days later on my day off.

The next day, I woke up and it was still swollen and very sore. While getting ready for work, I had a weird “spinny” episode that lasted about 2 seconds at most. Knocked me off balance and I had to grab the bathroom counter to catch myself. Scared me pretty good. I had no idea what it was (never had vertigo before). I went to work, felt fine, had no issues the rest of the day. Until 11pm that night. Thursday, August 25th, 2022, was the last time I felt ok. At 11pm that night, I flopped down on the sofa and I was hit with a huge vertigo episode. I was full blown on a tilt-a-whirl spinning. I could not walk as my balance was knocked out. Fully conscious, felt every bit of what was happening. I tried to find anything I could to center myself so I sat on my deck steps because they were hard, I could at least focus on the patio and try to not throw up. After about 10 minutes, the episode passed, but I was horribly dizzy. And sadly, I have been dizzy every day since then.

I was put on antibiotics the next day (Friday) for the scalp tenderness. It was believed that I had some type of infection and the antibiotics did clear it up quickly. Pain was gone in 2 days. The following Monday, I went to see my chiropractor. I had spent the weekend nauseated, unable to move my head without being dizzy. All I could do was look straight forward or move my entire body to look side to side. A week of chiropractor visits helped a lot, but I was left with the feeling of sitting in a bobbing canoe or kayak. And THAT is the feeling that has remained for nearly 3 years.

Now came the process of figuring out what was going on. Chiropractor said it was cervical instability in my neck causing the dizziness. I did feel a lot better after being adjusted, but the canoe sway feeling remained. So I consulted my functional medicine provider. We did extensive testing in October 2022. I came back very high for mycotoxic mold. Aflatoxin level was 20x the normal high, and Ochratoxin 3x the normal high, both mycotoxins originating from Aspergillus mold. Tested our house, and my office, and my office came back with high levels of Aspergillus in the HVAC room. From December 2022-February 2023, I worked from home while my office had the mold mitigated. I started on a mold detox protocol to get it out of my respiratory tract and my GI tract. When I say I felt pretty miserable during this time, I cannot emphasize how miserable I felt. I was exhausted, congested, dizzy, I would get motion sickness riding in a car or watching a movie or scrolling on a screen. Our working theory at this point was the sore lump on my scalp was possibly an Aspergillus pocket from mold exposure, which may have triggered vestibular neuritis, and the vertigo episode, combined with the cervical neck issues I have had for a long time.

I continued to get chiropractic adjustments, and did the mold detox protocol for about 6 months. I started to feel better in the sense of I wasn’t as tired, or as congested. But the rocking canoe feeling remained. Some days were worse than others, but I had that feeling every single day. I knew that total mold recovery can take 12-24 months, so I kept holding out hope that it would get better. It didn’t.

When this all started on August 25th, 2022, something changed with my vision. I was suddenly uncomfortable in my glasses. I felt like my vision was off. I saw the eye doctor in October 2022, 2023, and 2024. Vision test was perfect. In fact, my prescription actually improved at my October 2024 visit and my prescription was reduced in my left eye. I was hopeful that may be the issue and my canoe rocking would go away. It didn’t.

I refused to let this slow me down. But honestly I spent every single day feeling maybe 80% of what I should. I just kept pushing forward. I met with functional medicine again in the fall of 2024, and we started looking at what else happened in August 2022. What else may have triggered something besides mold. The first week of August I did have botox done (cosmetic not for a medical reason), and 2 days later I had a crown replaced and had dental anesthetic. I got very numb with that injection, more so than normal, so my functional med provider hypothesized that my body may have gone into “toxin overload” trying to eliminate the dental anesthetic and the botox while I was already fighting off mold. But at this point, the botox was long gone, and so was the dental anesthetic. It had been more than 2 years since those had been used. At this point I was told by multiple people on my healthcare team that it was probably just my anxiety. “Oh you probably have PTSD from your vertigo episode. Your parasympathetic/sympathetic nervous system is out of whack. You need to exercise more. Reduce your stress.” That was the point where I was about ready to throw the towel in. Do I have anxiety? Yes. Is it managed? Yes. Is it controlled and on average maybe a 2/10 issue for me? Yes. I would love to exercise more, but every time I get on the Peloton I feel even more dizzy!! I began to feel how most people do these days: gaslit and that there was no hope for me to ever feel better. I was trying to imagine what it was going to be like living for another 30-40 years with this constant canoe rocking feeling. It did not sound like much fun. Because with the canoe rocking also comes being unsteady on my feet, I run into things, I trip over my own feet…..and I was like this is not how an otherwise healthy 48 years old should be living.

In January-February 2025, I was reading an article about cervicogenic dizziness. In the article comments, someone mentioned something I have never heard of before: binocular vision disorder. I started investigating it. I looked at my husband and I said “listen to these things and tell me if this sounds like me”. I was ticking off most of the boxes of symptoms. I told a friend of mine about what I found online and she saw a TikTok video from an optometrist in California discussing binocular vision disorder, and she sent it to me. Listening to him on the video was further reinforcement that I needed to be evaluated for this. I quickly discovered that there are very few optometrists who know what binocular vision disorder/dysfunction is. In fact, there are only 55 neuro-optometrists in the entire country that even test for this. The goal of most optometrists is to make sure you have 20/20 vision. They don’t go looking for vision misalignment. I found one option about 20 minutes from me, but she specialized in pediatrics, and traveled to various towns caring for mostly developmentally challenged kiddos that had severe neurological issues and required special glasses. That option was out. I couldn’t find anyone else in my area. I was about ready to book an appointment with the neuro-optometrist in California.

I was searching yet again one night for possible treatment options in my area. Or at least within 4 hours of me. I came across the NeuroVisual website. The NeuroVisual institute is who TRAINS the optometrists to specialize in binocular vision disorder/dysfunction. They had a search option on their website and I couldn’t believe my luck when they listed Dr. Jerry Jenks, neuro-optometrist, in Platte City, MO. He is on the opposite side of Kansas City. Easy drive to go see him.

I went to Dr. Jenks website to research him more, and they have a section dedicated to neuro-optometry and binocular vision disorder/dysfunction. To book an appointment, you have to do a screening process online. I took the online screening, and they were to call me within a few days. A week later, Dr. Jenks called me and we had a great conversation. He told me that the average person with no binocular vision issues will score a 15 or lower on the screening test. I scored a 49. He was able to book my appointment to see him a week later.

On Friday, July 11th, I spent almost 3 hours with Dr. Jenks. He did an entire medical history, symptom history, balance testing, eye exam, the whole she-bang. He confirmed that I not only had mild horizontal binocular dysfunction, but I had significant vertical binocular dysfunction. I finally had a diagnosis: Vertical Heterophoria, a type of binocular vision dysfunction. He put me in a trial pair of glasses with lenses stacked up to match my prescription and level of binocular dysfunction, and for the FIRST TIME in almost 3 years, I was not dizzy. I won’t lie, I was pretty overwhelmed with emotions. A few tears may have happened. We ordered glasses for both daily vision and for sunglasses.

What were my symptoms that matched up with binocular vision dysfunction? Dizzy/light-headed/disoriented. Motion sickness. Poor coordination with walking. Poor depth perception, difficulty estimating stopping distance, walking into furniture or walls. Headaches. Head tilt (to the left) to compensate (I was not aware I did this). I had painful eye muscles at the end of the day. Upper back and neck muscle stiffness and pain. Pain across the temple/temporal region of my head. Word fuzziness when reading and on electronics. Blurry vision. Severe light sensitivity. Driving/riding into the sun would make my dizziness worse. Busy patterns and carpeting made my dizziness worse. My pantry and my closet made me dizzy because there were too many things to focus on at once. People swaying would make me dizzy. Grocery store aisles made me dizzy. I would feel like I was still moving when I came to a stop at a red light. My husband will tell you I pull to the right when driving my car/parking my car. Brain fog. Exhaustion at the end of the day. I would take a Power Nap at night more frequently.

What caused this?!?! Well that is also an interesting story. Balance is dictated by proprioception sensors in our body (body orientation sensors in our entire body). It is also dictated by our ears (vestibular) and our eyes (visual). When one of those is out of whack, you experience problems. Well, turns out mine were my eyes. Our eyes take 2 visions and via the optic nerve, turn those binocular vision inputs into a single vision that we “see”. When you have binocular vision dysfunction, the brain and the eye muscles cannot process both eye images into one image, they fight each other and create 2 images that the brain tries to send back out. That is what causes dizziness and muscle pain and exhaustion. You spend all day double interpreting every single thing you look at. And as the day goes on, you just wear out and the dizziness gets worse.

What caused my eyes to do this? Dr. Jenks believes it was a few things. One, I had a lot of ear infections as a kid, and that probably affected my vestibular system, so my body learned at a young age to compensate with my vision as primary balance system. When I was 9 years old, I had a significant concussion/skull fracture in the temporal region of my brain, where a lot of our eye muscle control is from our cranial nerves. That probably caused a mild case of binocular vision dysfunction, that again my body learned to compensate for. So what made this totally go to hell in a hand basket at age 45??

Hypothesis is my covid infection in 2022 affected my cranial nerves III and IV, which control the muscles around your eyes. I was sick in January. I know I had neurological issues from covid (lost my taste and smell, had brain fog, and word searching issues for a couple weeks). He thinks that the above medical history plus covid was then dumped over on its side with the mold exposure and the botox further weakening my eye muscles and affecting my cranial nerves III and IV.

On Friday, July 18th, I picked up my new prism lens glasses. And as I type this for all of you, my dizziness has been gone since I put my new glasses on. I have not had one single canoe swaying episode. Zero dizziness. No running into walls. No taking my glasses off because they “don’t feel right”. Turns out, I don’t even need bifocals! I just needed to correct the misalignment of my eyes.

To say this has been a life changing day would be an understatement. I am overwhelmed with relief. But I am also frustrated that statistics show 10-20% of the population have binocular vision dysfunction and there is very little knowledge about it. Dr. Jenks will be the first to tell you that in the post covid era, the incidence has gone up profoundly. What we have been told is “long covid” is likely to be cranial nerve damage from covid or covid vaccines, and there is a fix. It is simply a set of glasses with special prism correction specific to your vision issues. You would never know my glasses are prism, they look like a normal set of glasses you would pick out at any optometrist office.

If you or someone you know is experiencing these issues, I cannot stress enough to see a neuro-optometrist. If you are in the Kansas City area, Dr. Jerry Jenks can be found at www.outreachvision.com or at 816-858-6080. If you live outside of Kansas City, go to this site https://nvminstitute.org/ and click on find a doctor.

Go forward in good health. I hope this helps someone along their journey. I cannot emphasize enough how life changing getting the right diagnosis is. I also cannot emphasize enough to not give up and advocate for yourself. I work in healthcare and I was still dismissed and passed off as just anxious. Just my anxiety causing the issues. It clearly was not. God bless Dr. Jenks, and the amazing people who are willing to dig deeper. I have referred 4 patients this week to neuro-optometry exam as they have had nearly the same symptoms I have had, and I am hopeful they can have a new lease on a dizzy free life too. ♥️

Oh and side note: the only part of my life this did not affect was motorcycle riding! We hypothesize it is because when on the bike, I am grounded more and you use your vision differently and your other body senses than when doing other life activities. I actually felt better when riding my motorcycle! Which I will forever thank God for, because when this journey started, I was worried my riding days were over. 🙏🏻♥️