Warning...this is long! I will bold the more important things in case you don’t want to read it all.

Like some of you, I am trying to find the cause of my/our problem medically in addition to tech solutions. As far as tech solutions go, I have tried 7 phones, 3 monitors, different friends’ computers, projectors, different types of TVs, and many other things. I have not explored a whole lot of older tech as I just can’t afford to spend a bunch of money on things I can’t sell if they don’t work. Even an old CRT monitor online is over $100. I should go around to pawn shops and see what I can find but I just haven’t.

Anyway, I wanted to share where I am at so far with the medical side of things. I will post updates as they happen.

June 10, 2019: Optometrist diagnosed me with convergence insufficiency.

July 15, 2019: Ophthalmologist diagnosed me with exophoria/convergence insufficiency, dry eye, and meibomian gland dysfunction. He prescribed me lubricant eye drops which did not help with anything and referred me to a pediatric ophthalmologist. I wholeheartedly believe he diagnosed me with dry eye just to give me a diagnosis and to get me out of his office. Any dry eye (which I only occasionally experience) is a result of the underlying [and unnamed] issue.

August 15, 2019: Pediatric ophthalmologist diagnosed me with convergence insufficiency and prescribed orthoptic therapy. I also wore a prism patch for a few days but found no relief.

August to November 2019: 9 sessions of orthoptic (prism) therapy. After 9 sessions, they said I showed no more signs of convergence insufficiency. The orthoptic therapy I received for 3 months was not the type @martin does. The therapy I received only used glass prisms. I covered my eyes (usually alternating one at a time) with the prism until I saw double of the image on the wall. Then worked to bring my eyes inward until I saw a single image. Each time I went into the office, the difficulty would increase as they used larger prisms each time. I completed the therapy and they said the convergence insufficiency was treated. Despite this, my symptoms persisted just the same.

November 1, 2019: I had an MRI and the results were normal.

December 10, 2019: I returned to the pediatric ophthalmologist because my symptoms did not improve with the therapy. He could not understand why I am still having symptoms and said I am overcorrected (meaning my prescription was too strong) and am having “accommodative spasms”. He gave me a lower prescription for my lenses. Instead of wasting money on buying those lenses, I wore a pair of glasses from ₆ years ago with a similar prescription. There was no symptom relief...again a doctor just making random stabs at a diagnosis.

March 2, 2020: I saw a neuro-ophthalmologist in another city. He told me I do NOT have convergence insufficiency and if I did, I don’t anymore. So either I never had it to begin with or the therapy worked according to his assessment. He said I do NOT have dry eyes (which I already knew) and there is no inflammation in my eyes. Despite my MRI being normal, he said he believes this is a central nervous system response coming from the brain. He said I have “chronic pain syndrome” and I need to see a pain specialist. The treatments include medications (anticonvulsants/anti-seizure drugs or antidepressants), biofeedback, acupuncture, and psychotherapy (to deal with the depression the pain causes, I guess). When I asked why the pain only comes from electronic screens, he said that everything has a different neural pathway and every stimulus that we get has a different neural pathway and mine seems to be located into a visual sensation that “comes back and gives [me] a feedback loop as pain around the eyes”. When I asked about neurolenses, he said I do not have an ocular misalignment so that treatment is not pertinent. When I asked about getting a MRI while looking at the stimulus to compare to the baseline MRI, he said the MRI would not do anything for that (which I disagree with--see below). When I asked about an EEG, he said I could have an EEG but I don’t have a history of seizures and seizures typically don’t cause pain. He said this would be a function of the trigeminal nerve and said an EEG would not pick that up. The trigeminal nerve controls sensation and pain to the face and eyes and he believes that is the cause of the pain. This doctor was not interested in the cause--he said it does not matter at this point because I cannot erase what caused it and I have to deal with what is going on now. I also disagree with this mentality.

So here is where I am now...I am a bit at a loss after that appointment. I reject that this is as simple as “chronic pain syndrome” because it is ONLY chronic in nature because we are inundated with screens. Take away the screens and we don’t have symptoms! But I do not think it is farfetched to think this is neurological and it makes sense that some input from the screens is affecting the trigeminal nerve (or something else). I did a bit of research and there is a disorder called trigeminal neuralgia that peaks my interest.

The symptoms of TN: “Pain varies, depending on the type of TN, and may range from sudden, severe, and stabbing to a more constant, aching, burning sensation. The intense flashes of pain can be triggered by vibration or contact with the cheek (such as when shaving, washing the face, or applying makeup), brushing teeth, eating, drinking, talking, or being exposed to the wind. The pain may affect a small area of the face or may spread. Bouts of pain rarely occur at night, when the affected individual is sleeping. TN is typified by attacks that stop for a period of time and then return, but the condition can be progressive. The attacks often worsen over time, with fewer and shorter pain-free periods before they recur. Eventually, the pain-free intervals disappear and medication to control the pain becomes less effective. The disorder is not fatal, but can be debilitating. Due to the intensity of the pain, some individuals may avoid daily activities or social contacts because they fear an impending attack.” (https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Trigeminal-Neuralgia-Fact-Sheet)

I don’t think most of us experience our symptoms with normal daily activities as mentioned above (I certainly don’t)...but again, it’s possible the screens are doing something to the trigeminal nerve. There are two types of TN and the symptoms do not all align with what most of us complain about...but some of them do. So this may not be the answer but it is certainly interesting and makes me wonder if the treatments for this would help us. The treatments for this are the same as “chronic pain syndrome”.

There are also research studies for trigeminal nerve pain.

I am going to see my primary care doctor on Tuesday and ask for a prescription for Gabapentin. It’s a widely used nerve pain and anticonvulsant medication with lower side effect risks. As much as I hate the idea of taking medications for this, I am desperate and if this is neurological, it is one of the few treatment options available. I am also going to ask for a referral to a neurologist or neurosurgeon AND a pain specialist. I am trying to exhaust all options. If these options are not fruitful and I still find no relief, I may contact the Mayo Clinic and see if there is a doctor there who can help.

I also want to push for a MRI while looking at the stimulus. There are different types of MRIs. I work at a research facility and our MRI here is more powerful than a diagnostic MRI as we use a very high tesla machine. On a daily basis, we give people stimuli and see through the MRI how it affects their brain. If the doctor won’t order one, I might work up the courage and set aside my pride and ask for one where I work and then see if I can find someone to compare the results to my first MRI. I am not sure if they can get a good look at the trigeminal nerve or not through MRI.

I have considered going to vision therapy (the kind @martin has had success with) but it is VERY expensive here and now I am being told I do not have binocular dysfunction anymore.

I am frustrated by the varying responses by physicians. I don’t know who to believe. But all I can do is continue to try different things--tech solutions AND medical solutions.

I will keep you all posted on the outcomes of my future appointments. Maybe the info can help some of you.