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.

I want to caution you against any medical diagnoses you get. You are also not likely to see anything at all on further MRI scans. The first MRI scan told the doctors you don't have a tumour, or any other damage to your brain. That's pretty much the limit of what MRIs are good for. Viewing a bad device during a scan won't make any difference, and its also not possible, can't have any metallic objects near an MRI.

The thing is, what we experience is beyond medical and scientific understanding. But doctors seem to hate saying they don't know whats up. Having said that, pain medication might help, so its worth trying.

Sorry to be negative, but in my opinion it'll be better for you in the long run to accept whats happening to you, and find what small things you can do yourself to cope with this.

    Seagull can't have any metallic objects near an MRI

    This is a good point; however, some MRIs (like the ones where I work used for research), have a built in screen used to show visual stimuli and show options for games/tasks. I would have to assume the screen would bother my eyes but it's possible it wouldn't. It may be unrealistic to think whatever is going on here will be detectable, though.

    I completely agree with you that doctors don't like the idea of not knowing what's going on and will slap a diagnosis on someone without understanding the full picture. I believe that has already happened to me as you can see in my write up above.

    I don't think you are being negative. I think you are being realistic but I am not willing to accept this just yet. If at the end of all these doctor's appointments I am at a dead end, then I will have no choice but to accept it and find work-arounds. It would certainly be easier to give up and accept it. I think it is unrealistic at this point to think some doctor will take a special interest and be interested in doing any research but I am hoping to find a possible solution or something that can at least reduce the pain to a bearable level. At this point, my ability to function at work is impaired and to give up now would mean to perform poorly at work and potentially lose my job.

    I do agree to be cautious of a medical diagnosis at this point but if something works for me whether it is a medication or something else, I am hoping it can also help someone else on here.

      laur5446 I went to a private clinic for an MRI a few years back (due to an unrelated eye condition) and it came back normal. They tried to give me hard anti-seizure meds. I didn't take one pill because I knew it was BS. It turns out for about 3 years I was getting severe bouts of acute interocular hypertension, thankfully it didn't result in glaucoma and a laser treatment and drops keep my eye pressure stable.

      I had to fight to get a referral from my local optician to my local eye clinic and every step along the way I was told I was suffering from migraine. Which wasn't the case. So I know how easily people will misdiagnose (even if you pay a LOT of your own money for their opinion).

      How are you with older tech? Is there a cutoff point for you? Have you tried connecting a really old (but good) machine to a new LED monitor?

      I think due to the fact that all tech in the last 5+ years has dodgy dithering/rendering, it is hard to seperate the panel being at fault from the display drivers/OS. I am more comfortable with CCFL (just because it's softer on the eyes) but LED is fine, provided the right equipment is connected to it. I am sensible with my LED choices though and make sure it's PWM free and a reliable brand (Dell Ultrasharp as an example).

      It's not right for anybody to have to resort to taking meds in our situation. As your MRI came back okay, and you're fine in the other areas of your life, I wouldn't touch them. I'm sure we could all find a pill that works for us, or at least enough for us to get by in our careers, but this really isn't the answer, and given time hopefully more research will be performed to get to the bottom of this issue. I still maintain the very fact I am fine on one machine but not on another is an epic fail for technology, not my body.

        laur5446 some MRIs (like the ones where I work used for research), have a built in screen used to show visual stimuli and show options for games/tasks

        Should be able to get an "MRI screen" to induce eyestrain with enough work and collect data using it 😃

          Seagull doctors seem to hate saying they don't know whats up.

          The last doctor I met, an orthoptist, finally said he believed my symptoms but did not have the know-how / means to help. He also confessed to be completely unaware of potentially critical displays' features like dithering. He said though that they have been recently observing new eye problems in kids, likely caused by excessive use of electronic devices. These days many develop eye syndromes which were not present 10 years ago, so in some time it may become clear what the heck is going on with regard to displays. They just have no clue right now. The fact that none of the 10 doctors I talked to about my eyestrain knew about dithering suggests me that we have not made enough noise.

          I too had an NMR (is it different to an MRI?) end of last year. I went to the ophthalmologists 4 times in 2 months and showed him my eyelid twitching. He found interesting that the left side was more impacted and finally after my fourth visit he prescribed me the resonance. The NMR was negative and I was even told I have a very healthy brain. I wanted to laugh. The neurologist could not find any nerve pinching on the left side, nothing different to the right. That is what they were looking for with the NMR.
          By the way, recently I asked for a change of overhead lighting and it is not better. After days and days under the new light (color changed from orangish to "natural white" which is an outrageous name because it looks everything but natural) my symptoms have worsened and the right side twitches pretty much like the left. I also have so much tension in my neck and my cheek muscles that I sometimes tell myself I am an hero to reach the end of the day. Just need some motivation to accept my low performance...

          I too was thinking of begging for an EEG. I had a few as a kid because of migraines not related to electronics and were always negative. But I would like to carry out some serious test in the presence of an offending stimulus, not just a mere EEG.

          laur5446 I am not willing to accept this just yet.

          👍

          How do you handle modern lighting? Almost no one seems to be bothered here. Maybe because most of you guys can stay away from LEDs and fluorescent lamps. For me it has become problem n. 1. I can use my MacBook at home without issues but in the office it is a nightmare from minute 2...

            AGI How do you handle modern lighting? Almost no one seems to be bothered here. Maybe because most of you guys can stay away from LEDs and fluorescent lamps. For me it has become problem n. 1. I can use my MacBook at home without issues but in the office it is a nightmare from minute 2...

            We recently "upgraded" to LED lighting at home. I notice symptoms after a few hours, it's ever so slight unsteadiness. Also going into a hardware store and looking in the lighting section is like superman heading towards kryptonite! Thankfully halogen is still widely available for personal use, but in work I guess you're SOL. There are of course big organisations like Lightaware which are trying to get to the bottom of this issue and persuade manufacturers to produce better LED lighting.

            AGI He said though that they have been recently observing new eye problems in kids, likely caused by excessive use of electronic devices. These days many develop eye syndromes which were not present 10 years ago, so in some time it may become clear what the heck is going on with regard to displays.

            This concerns me deeply. I just hope the effects are not permanent and can be reversed, such as quitting smoking at a young age.

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              diop Yes...the constant misdiagnoses is entirely frustrating. I am sorry you also dealt with that. I agree that every diagnosis I have received is BS. I have not been able to explore a ton of older tech. My laptop, though, is from 2001 and hasn't had an update in years and bothers my eyes now. I do not know if there is a cut off point. I have not tried an old machine with a new monitor and I haven't tried an old monitor or TV. It's on my list of things to do. I am not as tech savvy as a lot of you and trying all these tech solutions are expensive and slightly confusing (not that doctors' appointments and MRIs are not). I agree that it is unfortunate to think of resorting to medications in our situation but to wait for more research...that could take YEARS. While the subjectivity and misdiagnoses of medicine is highly frustrating, I have to think that there is something wrong with us because WE have this problem and other people don't. Why us? Yes, there has got to be a tech solution but there is something in OUR brains or something wrong with OUR eyes to be the only ones terribly and negatively affected by the new tech. I want to continue trying both medical and tech solutions...but I am at risk of ruining my career (I am sure others are dealing with the same) so I feel I have to try things even if they are not ideal or fair. It's possible I won't find a medication to help but if I do find one that helps, I will take it for a while at least (assuming the side effects are bearable). I will do it sadly but this whole situation is heartbreaking anyway.

              JTL Should be able to get an "MRI screen" to induce eyestrain with enough work and collect data using it 😃

              This would be awesome! If I can work up the courage and set aside my pride at work, I may ask for one.

              AGI The fact that none of the 10 doctors I talked to about my eyestrain knew about dithering suggests me that we have not made enough noise.

              While I have received layman's explanation of dithering, it is hard for me to try to explain this potential issue to a physician because it's hard for me to understand it entirely. So, in my case, they certainly aren't listening to me. I feel dismissed by every doctor I have spoken to.

              AGI But I would like to carry out some serious test in the presence of an offending stimulus, not just a mere EEG.

              Exactly. This makes logical sense to me but no one listens. If I am willing to go into debt for these tests, just f***ing order one for me! I don't know that a non-research physician will be interested in exploring this, though. They want to kick you out after your 30 minute allotted appointment time.

              AGI sometimes tell myself I am an hero to reach the end of the day. Just need some motivation to accept my low performance...

              I relate to this a lot.

              AGI How do you handle modern lighting?

              I don't seem to be bothered...to my knowledge, at least. My eye strain is always the worst at work but it does not matter if I keep the lights off in my office or not. Going out and about to stores and restaurants doesn't bother me. The lights at my veterinarian's office bother me but I believe that is because I see a visible flicker. Otherwise, I don't notice lighting bothering me much. I am sorry you have both the screen and the lighting issue. A double-whammy. 🙁 I suppose I could test buying an LED bulb and putting it in my bedroom just to be sure.

                laur5446 I don't seem to be bothered

                I never had big issues until I got this job two years ago. I am not bothered by fluorescent light in general, like at supermarkets. I even have fluorescent lamps in the living room and in the kitchen of the apartment I rent. No problem.
                It sounds a paradox, the lamps that kill me are ultra-modern ones, like technology of the last 2-3 years. Fancy color temperatures supposed to relax the eyes. They must be kidding me. I had opened a post about it. I noticed the lights which give me troubles run at low power. Same bulbs running at high power are okay. So it must be something related to the low power and I do not think it is a matter of low illuminance, it is probably flicker to some extent. But no one cares, doctors or technical people I talked to, and I have not been able to assess the cause by myself.
                I reached a point that even 2 weeks off work do not allow me to recover fully.

                laur5446 I don't know that a non-research physician will be interested in exploring this

                I agree. The only way is to involve researchers, most "standard" doctors won't show interest. I promised myself to shoot emails to authors of scientific articles on the subject but I am so behind with my work and my life because of this problem, that I hardly find time to get the minimum done. It is a vicious loop because I need to work longer hours under those conditions in the office or at home to recover from the poor performance during the day. I am exhausted, unhappy and anxious because this time I really do not see the way out.

                  AGI I reached a point that even 2 weeks off work do not allow me to recover fully.

                  That is horrible. I am sorry to hear that. I listened to that podcast someone posted not too long ago about a lady with a serious light sensitivity. It is crazy that this technology (lighting and computers) are supposed to be better but they are actually making people sick.

                  AGI I promised myself to shoot emails to authors of scientific articles on the subject but I am so behind with my work and my life because of this problem, that I hardly find time to get the minimum done.

                  There are several studies being done on the trigeminal nerve and the study information includes email addresses (probably not the scientist's email but maybe an assistant) and I considered doing the same. I don't think I have trigeminal neuralgia as I described in the original post but maybe one of them would be interested in the effects of tech on the trigeminal nerve or any other part of the brain...wishful thinking, possibly. I think I will send emails, though, when I can work up the courage to be on the computer willingly for hours doing so. If you have any saved articles, you could send them to me and I could send the authors whatever email I draft up. I worry I won't be able to articulate the tech aspect of all of this very well but I could probably pull enough info from this forum to come up with something that makes sense. But still...so much computer time. I really do relate. I am extremely fortunate to have a boss that tries to find things for me to do outside of the office but the majority of my work is done on the computer. My productivity has declined significantly and I worry about finding a new job in the future. And, like most of us, my personal life has suffered, too. I feel depressed and anxious a lot...I believe you have been dealing with this longer than I have (next month marks one year). Let me know if I can help with the email part because I don't want to give up yet.

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                    LED lighting in the workplaces kills me. The absolute worst. Restaurants too. Worse than screens

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                      laur5446 While I have received layman's explanation of dithering, it is hard for me to try to explain this potential issue to a physician because it's hard for me to understand it entirely. So, in my case, they certainly aren't listening to me. I feel dismissed by every doctor I have spoken to.

                      My understanding of it is this.... Let's say my entire screen was one pixel. I want to view a certain shade of red, but my computer monitor/graphics card can't display this natively. With dithering, the entire screen (equivalent to one pixel) displays the closest color it can below the shade I want to see and then the closest above it in an extremely fast succession. I will then 'perceive' the color in-between these values (the correct shade) but it's not actually there. In many ways it's like PWM but instead of on/off at a certain frequency to simulate a brightness level it's changing color values instead.

                      TL;DR - PWM is flicker and Dithering is flicker.

                      degen LED lighting in the workplaces kills me. The absolute worst. Restaurants too. Worse than screens

                      Oh really, I thought I was the only one. Sorry about your situation.
                      My seat is at a window under the intersection of a vertical line of LED lamps and an horizontal line of fluorescent lights. 2 in 1, what a jackpot. In addition I also have reflections from outdoor light. In fact paradoxically at night it is slightly better.
                      Now when everyone is gone I move with my laptop to a conference room where there are arrays of mini-LEDs. Those feel so much better than the big lamps in my office. I need to find out why. I need to accurately measure the flicker.
                      By the way, I suffer from two type of disturbs. One is more physical, like eyestrain, neck and face muscle tension and eyelid twitching. The other is very poor concentration and extreme fatigue. When I go home I feel exhausted as if I have been run over by a truck. When I get in in the morning, outdoors is typically beautiful and sunny. I enter the office and immediately feel like a guinea pig in a hospital laboratory. The difference to natural light is huge. I really do not know how they can call that fluorescent bulb "natural white". It is insulting.

                      diop There are of course big organisations like Lightaware which are trying to get to the bottom of this issue and persuade manufacturers to produce better LED lighting.

                      Yeah, I did speak with them. The problem is we do not have a crystal clear evidence of what is wrong in the lamps and the displays. And according to all the doctors I visited I am healthy. Basically, I am making my symptoms up.

                      laur5446 Let me know if I can help with the email part because I don't want to give up yet.

                      Thanks, let's try to work on this. I downloaded articles probably a year ago but never made a move as I need to catch up with so many things...

                        AGI I need to find out why

                        Probably comes down to how they are powered. If the LEDs are powered by a standard light bulb fitting that will take any type of bulb they will flicker. But, if they are driven by some purpose built LED power supply, with a proper AC-DC rectifier, they will not flicker.

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                          3 months later

                          I know not everyone is keen on seeking medical treatment here, but I thought I would add an update to my (lack of) progress.

                          I have been taking Gabapentin for a couple of months now. It does nothing to help my eyes but it seems to have had a positive effect on my anxiety (although it's possible my lack of anxiety has been due to being stuck at home with nothing to do during quarantine--I have been furloughed and have been able to take a break from computers).

                          I had the neuro-ophthalmologist send a referral to the Mayo Clinic. Sadly, and weirdly, they called me and said their neurology, ophthalmology, and pain specialists all felt they could not help me. It's possible the referral was written poorly, but I thought it was very sad that this very highly regarded medical facility declined to try to help me.

                          My primary doctor has not found a neurologist for me to see and states I have to wait until this COVID situation has died down.

                          I still want to see a neurologist but I guess I have to wait...my next steps are to email some researchers and possibly see a vision therapist like Martin has seen--although I have been told I don't have CI anymore. I might try Neurolenses but I have a feeling they won't help.

                          I have a new laptop that hurts and my phone still hurts--I tend to choose to ignore this problem when I can because endlessly trying to find solutions is so stressful, costly, and makes me feel hopeless.

                          Anyway, if anything else worth noting arises in my search for solutions, I will add another update.

                            Hi, I've got same problems as you (with light and screens), but recently I manage to made a little discovery which maybe can help us somehow. My problems starts about 4 years ago, and I tried many things which didn't help me at all. Recently, while surfing the net, I came across "ayurvedic glasses", you can find over the net that they're able to fix/cure your vision problems. They're cheap, so I've decided to give them a try and ordered a pair. It stated that due to little pinholes, light entering the lenses straight, unlike ordinary glasses (or without glasses). You can't just wear them and forget about everything, you have to get used to them, starting from 5 minutes a day, and increase this time by another 5 minutes each day. I tried to use them in front of one of the screens which cause me symptoms even after about 10 minutes, and what I've realized, after couple of days, when I was wearing them for 30 minutes, none of the symptoms occurred at all! Unfortunately, there is one downside, after wearing them for few days I've noticed that my eyesight was getting a bit worse, so I stoped in fear of any eye damage that them can cause me...

                            All in all, my discovery was that, I didn't experience any symptoms when wearing glasses! Maybe it will help us deal with the problem somehow. Please tell me what you think about this. Maybe someone tried those glasses before? Thanks!

                              This was pretty crazy to read, it almost exactly mirrors my path over the past 15+ years.

                              The sad truth we all need to accept is that doctors do not know what is wrong here. I've seen over 20 specialists in 8 states and counting, and gotten the same brick wall every time.

                              Basically, after years and years of searching and traveling, it boils basically down to this:

                              It is a brain problem, not an eye problem.
                              It MAY involve the trigeminal nerve, specifically the supraorbital branch that pierces the currogator muscle near your eyes.
                              It can be a screen issue or an issue with what drives the screen (good screens can go bad when switched to different sources)
                              There seems to be a likely sinus connection
                              And thats about it.

                              I've tried every medication under the sun, had more MRI's and brain scans than you can imagine, travelled all over the US and seen the top specialists, been to countless quacks, cooks, and snake oil salesman, did vision therapy till the cows came home, and none of it was a cure. The only positive things I found was vision therapy helped with one every specific case (credit card terminals in stores), a beta blocker seems to increase my resistance to CFL lighting, and migralenses help a little bit.

                              My current nuerologist, who I eventually settled on because he was the first one to level with me and not feed me bull, said that problems like these are not uncommon, they tend to go away as we age. And I have experiences that, I started getting this issues in my late 20's, I am 45 now and there are things that bothered me before that no longer do (CFL's used to be my biggest trigger, now they are almost harmless, although you rarely come across them anymore, and LED headlights on cars used to be awfulo and they have gotten much more tolerable over time). He said based on his observaitons these tend to age away around your mid 50's to 60's. Not a great diagnosis bu it's something at least

                                bisk89 Recently, while surfing the net, I came across "ayurvedic glasses", you can find over the net that they're able to fix/cure your vision problems. They're cheap, so I've decided to give them a try and ordered a pair. It stated that due to little pinholes, light entering the lenses straight, unlike ordinary glasses (or without glasses).

                                If they help you then great, but no offense, those look like total bunk.

                                laur5446 I had the neuro-ophthalmologist send a referral to the Mayo Clinic. Sadly, and weirdly, they called me and said their neurology, ophthalmology, and pain specialists all felt they could not help me. It's possible the referral was written poorly, but I thought it was very sad that this very highly regarded medical facility declined to try to help me.

                                They were just being honest. Our condition is so rare it is not studied, or known, and there is no treatment or even a name. You learn after a while that despite all the "oohs" and "ahhs" around modern day medicine, it is extremely focused on the most common ailments people have, As soon as you stray off the beaten track into somehting more exotic, you very quickly reach the limits of medical science and are left in the cold.

                                  ensete If they help you then great, but no offense, those look like total bunk.

                                  You missed the point...

                                  dev