Debilitating eye condition for 1.5 years with no apparent cause or diagnosis

Location: Both eyes

Onset: Since about April 2019. Symptoms have been gradually increasing but stopped getting worse about three months ago. Symptoms are still unbearable even if they aren’t increasing in severity.

Frequency: I experience symptoms every single day with very few exceptions. However, I can have symptom free days if I stay away from my “triggers”(see Triggers).

How many times before and over what time period? I experience symptoms for several hours every single day unless I avoid my triggers (see Triggers)

Type/Severity: Severe tension and headaches at my temples, forehead and general eye-area and eyes. Mild to extreme vertigo and seasickness-like nausea without any urge to vomit. Clumsiness due to vertigo. My vision itself is unaffected. I’ve been wearing contacts and glasses for nearsightedness (-5.25) for more than a decade with no issues. Symptoms increase in relation to how much time I spend doing triggering activities. Essentially, I’m disabled about 1/4-3/4 of any given day.

Triggers(very important): Basically anything that requires “focused” vision: Looking at TV screens, computer monitors, reading, smartphones. Looking at objects or people moving. Looking at traffic. Moving my head quickly in non-vertical positions, like if I’m bent forward, tying my laces, looking down at a table, etc. Wearing my -5.25 prescription glasses increases the impact of all before-mention triggers. Wearing contacts significantly decreases the rate at which the headaches and vertigo reaches a point where it’s unbearable but symptoms will still build to a point where I can’t bare it anymore, it just takes more time. If I avoid my triggers entirely, then neither glasses nor contacts cause any symptoms.

Self-treatment: Avoiding anything that requires for me to focus my eyes on anything. So essentially anything productive where you rely on your eyes.

Effect: I can perform any task up until the level of vertigo and headaches get so severe that I can only lie down and close my eyes until it goes away. Example: Writing this post on my phone is causing me to have severe headaches and vertigo for the next 30-60 minutes.

Associated Symptoms: Stiffness in my neck that goes away and increase depending on how long I force myself to be exposed to my triggers. Depression and anxiety over long-term consequences of not being able to use my eyes and having to change work to a low-paid job even though I’m perfectly healthy and capable. But then I spend a few days avoiding work, movies, video games, texting, and all symptoms are gone. It’s driving me insane. Doctors say: I’ve visited a vast array of specialists including eye doctors none of which have found anything. I’ve even had xrays and MRI scans. Nothing to be seen, no diagnosis.

My own opinion & observations: I’ve repeatedly told my GP and all the specialists that this condition is exclusively related to my eyes and how I use my eyes only. I feel the strain and tension build as I use my eyes, there’s no mistaking it. All my triggers come from activities that, for a normal person, would just cause benign eye strain or a headache after a few hours, like reading, watching a movie, playing a video game, reading small letters at a long distance, going to a busy mall or grocery store. But they can’t find anything and just say something like “vertigo is normal” even though the ENT did not find any loose crystals in my vestibular system or indicators to BPPV. But it’s not just vertigo -I’m 100% convinced there’s some kind of condition in my eyes that’s causing these symptoms as I can, without exception, make the symptoms go away “simply” by avoiding using my eyes. I’m convinced my eyes are either misaligned(strabismus) or I’m experiencing “hidden strabismus” but the eye doctor says there’s no indication of anything whatsoever.

Any ideas what type of doctor could help me or what might be happening with my eyes?

Yes, my prescription glasses and contacts are up-to-date and all my other health parameters are perfect. In fact, my eye-sight has been checked by several eye doctors independently over the last 1-2 years. And after over 1.5 years of living with this condition, I have no reason to believe it will resolve itself without intervention.

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