I’ve written previously about issues I’ve had with visual motion and related symptoms. After months of testing and looking for a diagnosis, I’m still not sure if I’m closer to an answer. Whatever the diagnosis may be, it seems to involve my inner ear and brain.
After posting this article, I came across something that could be the cause of my symptoms. I was at work one day and was having an eyestrain headache. I started searching online to see if it might be related to dizziness/vertigo and came across a condition called binocular vision dysfunction, where a small vertical misalignment of the eyes can cause a whole host of symptoms including dizziness. After taking an assessment, I wondered if I could have this. I found an eye doctor near home who worked with prism lenses, the treatment for binocular vision dysfunction, and decided to make an appointment. At first, the doctor just thought I needed progressive lenses. She thought I could benefit from a pair made specifically for office work or using a computer for hours at a time. I could also have a “regular” pair for when I would not be using a computer. At first, I thought these glasses were the answer. I felt so much better wearing them. However the symptoms returned. I also discovered the reason I felt better wearing them was the parts of the lenses with a stronger prescription. I’m farsighted, and my glasses before the progressive lenses had +1.75 lenses in them. I found +2.00 readers at the store and found that those made me feel a lot better. I started wearing these because the entire lens had the strength I needed. The funny thing was that my vision itself didn’t change much, just how I felt. It seemed like a load had been taken off my brain and body. When I went back to the eye doctor again, she did more testing and ended up finding a misalignment. She had my glasses remade with lenses containing prisms and the stronger power. Those glasses also worked for a short time and then seemed to stop. A return visit resulted in yet another pair of glasses being made, this time with stronger prism and stronger power, +2.25. These new glasses were definitely different. I could wear them and be symptom-free, but I would be tired all the time. I discovered when I began doing the things I was doing previously to control my symptoms, my energy returned, but so did the dizziness and symptoms related to the visual motion. I also began noticing more problems with head movement and positioning. After talking with the optician, we decided that the glasses were not the cause of my symptoms. I decided to find out what I could try next.
One thing I considered was more inner ear testing. I knew that an inner ear MRI had not been done, and at that time, I thought it was the only test that had not been done. I made an appointment with my ENT doctor, and he agreed to schedule an inner ear MRI. The results of the MRI were normal. He decided to have me see a neurotologist and found one about two and a half hours away. In the meantime, I was doing my own research and found out that there was testing that was not done by the ENT doctor back in 2018. The tests that piqued my interest the most were the VEMP (Vestibular Evoked Myogenic Potential) tests, especially the cVEMPs (cervical). In 1995, a child I was babysitting pointed a cap gun right at my left ear and pulled the trigger. In 2015, I thought I had an episode of vestibular neuritis. I had written about it in my story. I had read that the saccule can be vulnerable to damage from noise and that a form of vestibular neuritis can cause caloric testing to come back normal. cVEMPs would be abnormal in that case. I wondered if I might have bilateral vestibular loss caused by those incidents. My symptoms seemed to start after the 2015 incident, so I thought that maybe my brain compensated from any damage caused in 1995, but the 2015 incident damaged my other ear, causing me to have ongoing vestibular symptoms since my brain no longer had a “normal” ear to work with. I was anxious to have cVEMP testing done. However, the doctor I was scheduled to see kept rescheduling my appointments. I tried to get an appointment for just the testing that could be done sooner, but I ended up getting lost on the way to the appointment. I gave up on that doctor and decided to find someone closer to home who could do the tests. Fortunately, I was able to find someone. They were able to do the cVEMPs and others as well, and all of those tests came back normal. They thought they would try oVEMP (ocular) testing next. They didn’t have the equipment for it, but once they got the equipment installed and set up, they called me in to have it done. They did that test along with the ocular counter roll test. The person doing the tests said the results of each should show the same abnormality, and they did. I had vestibular loss in my right ear. Something finally showed what I had thought all along, that there was damage somewhere causing my continual symptoms. The problem was the diagnosis I got back from both the clinic and my ENT doctor. We were back to the original diagnosis that I had doubted and questioned, vestibular migraine. People diagnosed with vestibular migraine are more likely to have abnormal oVEMPs. One study I found even suggested that it could be a biomarker for vestibular migraine. The two diagnoses I’ve been given, vestibular migraine and PPPD (Persistent Postural-Perceptual Dizziness) just didn’t quite seem to add up. Other than oscillopsia, which I don’t believe I’ve had, I felt that bilateral vestibular loss fit my symptoms and experiences much more closely. Another thought I had is that my brain is for some reason not handling the damage to my inner ear the way it should, causing my continual symptoms. Perhaps I never fully compensated from the 2015 incident. Neither doctor who has seen my latest results believes I had vestibular neuritis. The ENT doctor believes my caloric testing back in 2018 would have been abnormal. The doctor who did the VEMP testing did rotation chair testing as well, and those results came back normal. She didn’t see a reason to repeat calorics after seeing those results. While she didn’t come out and say that my normal caloric and rotation chair testing ruled out vestibular neuritis, she did say that she didn’t believe that’s what I had.
Right now, I’m stuck with a questionable incident in 2015 that may or may not have been vestibular neuritis and with still not really knowing the cause of my symptoms. A portion of the superior vestibular nerve does connect to the utricle, which is the portion of the inner ear that the oVEMP tests. I have to wonder about the possibility that this portion of the nerve is what was damaged and what caused the 2015 incident. I’ve heard conflicting reports about caloric results normalizing over time. If I’d seen a doctor when the incident happened in 2015, would my caloric test results have been abnormal then? Usually, a person compensates from a unilateral vestibular injury. If I’ve not fully compensated, what’s preventing it? I’m on the autism spectrum, and I believe I have a past history of migraines triggered by eyestrain. Would those conditions just make my brain more sensitive to the mismatched signals coming from my ears? When the 2015 incident happened, and I read up on vestibular neuritis, I read that one should continue to stay active and to do daily activities to force the brain to compensate, to adapt to the mismatched signals. I did those things. In fact, the episodes of intense dizziness/vertigo stopped eventually. I had not planned to see a doctor unless things didn’t get better, but since they did, I never went. I now wonder if that was a mistake. After those episodes stopped, the other symptoms started creeping in over time, starting with daytime sleepiness that I could not explain or account for. Eventually, in 2018, other and more severe symptoms began, which prompted my visit to an ENT doctor and everything else that followed.
Even though I’ve been very frustrated with testing, the results, and the lack of a (believable) diagnosis, I’ve been very thankful to find things on my own that I can do to help myself. I still wear the glasses with prism lenses. They seem to work just like regular glasses, and I believe they help take stress off my brain and body, which are already having to cope with the vestibular loss. I’ve found that sitting up straight and holding my head upright and straight ahead also helps. I use my computer monitors at eye level and keep them at a distance as much as I can. I minimize the use of tablets and smartphones because they’re difficult, if not impossible, to use at eye level, unless I’m sitting at a desk or table. I use my monitors at full brightness and without any type of “nightlight” setting to prevent flickering. I put a pillow behind my back to assist with sitting up straight. I try to keep an upright posture as much as possible when moving around. I sleep on my side at night to keep my head, neck, and back all in line. I’ve started taking 60 mg a day of ginkgo biloba to see if it might make a difference. I researched it and potential interactions with my current supplements and medication before taking it. I’m no longer taking prescription anti-depressants, and other supplements that might potentially interact with it I take in small doses, so I decided to take a chance with it. I started with one 120 mg capsule a day, but that was too much. I seem to feel pretty good with 60 mg a day, two 30 mg capsules, one in the morning and one at night, but I’m hoping to see more of a difference in the vestibular symptoms, which I really haven’t noticed much at this point in time. I’ve read it can take a few months for the full impact to be noticed, so I’m hopeful in a few more months I will see a difference. One difference I have noticed is that I don’t seem to get as sleepy. That and feeling better in general on it are enough to keep me going with it.
Even without what I believe is the right diagnosis, I believe I can answer the question I posed in the title of this post. I believe without a doubt that both my brain and my inner ear are working to cause the symptoms I’m experiencing. Hopefully one day I will truly know why, if it truly is vestibular migraine or PPPD, or if it’s something else, like a lack of complete compensation from a previous vestibular injury.
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