Thanks a lot for all the details. I feel you.

Out of curiosity, why do you think the AC affects us so much? You seem to have solved that problem. What was your finding?

About vision therapy, could you briefly summarize the type of exercises you carried out? Were more of the Brock String type or cards/colors etc etc?

Do you also have vertigo / lack of balance issues? I ran some balance tests with closed eyes and was ver worried about my poor performance. Recently, I also discovered that I suffer from seasickness. Furthermore, a few months ago I started swimming in the sea and I had a few episodes in which the sea was moderately rough. When I got out of the water, I fell to the ground. I tried to stand up and fell again. I had to wait minutes to recover. My head was not spinning though. My whole body was affected. The first time I thought it was from excessive efforts and low blood pressure, but it happened again and I am now sure it was caused by the waves.
I suspect that all those episodes are related to a complex disturb which manifests itself also at work under certain overhead lights. Indeed in the office I feel fatigued, I lack concentration and somehow my balance and consciousness of what surrounds me are impaired.

18 days later

This is interesting. I have never seen these but I don't think they would be a feasible solution. Have you tried them again?

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

I appreciate hearing your experience and reading about all you've gone through to try to find a solution/cure. It definitely makes me feel pretty hopeless but confirms my thoughts that I will just have to come to terms with adjusting my life around this problem. The one thing that will always be a nightmare is work...I can avoid screens at home but I can't at work. And I can't find a home setup that works for me but don't have the money to continuously switch out electronics. Why does your neuro say it's likely you could age out of this condition? It would sure be amazing to just wake up one day and things would be back to the way they used to be. Can I ask what states you saw specialists in? I hope to move to the northeast in the near future and hoped doctors may be more helpful up there but overall, I think I will just continue to meet brick wall after brick wall like you have. Although, I think you have done a good job narrowing down possible causes--there is just no help available. I actually have never had any serious sinus issues.

ensete 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.

Yeah...I am learning this quickly. 🙁

Update below
I have tried some more strains of medical marijuana that have not helped. I tried kratom (legal) and it did not seem to help. I think I will just give up with medical help until I move (later this year or early next year) but I will continue to update periodically if anything changes.

          laur5446 Im sorry to read that. Did you give a shot to the eye exercises? I think if you followed through, you could get some improvement. Might not cure it completely, but for me the pain is 1000 times better.
          Judging by the tests I gave you on skype, you have a serious case of convergence insufficiency. I am helping a friend right now with the same. Its a lot of work, but at least a thing that can be improved until (if, when) tech companies take notice and change something finally.
          I can make you a shared google docs sheet with progress reports.

              martin I'd be interested in progress reports--how are you measuring progress? By pain symptoms?

              And yeah, I keep starting the exercises and giving up. I have greatly appreciated your patience and assistance but I think I need some in-person guidance because I worry I don't do them correctly. I am still toying with the idea of going to an in-person clinic for the vision therapy but it costs so much money. Additionally, I have been told by the last doctor that my CI is gone. If a couple of professionals tell me I have it and a couple tell me I don't, I am at a loss at who to trust. So I am still definitely considering paying for a few in-person sessions but I am tempted to wait until I move (which could be 6 months to a year from now) just because I have lost faith in the health care professionals in my state.

                  laur5446 Yes, pain or lack of is a good reference. So is progress report in exercises, as when you improve the numbers and levels of it, then you know youre getting better. I can make you a shared google doc, but you have to get the 3d paper glasses and the brock string for the exercises.

                      martin I do have the glasses and brock string. I just get frustrated with it because it's hard to know if I am doing it all correctly.

                        6 months later

                        Reading this thread was super depressing, and I've pretty much had the same experience. No help from doctors, no medicine has worked, no glasses/screen protectors/screen settings, etc. I'm getting really concerned about the future, especially since my line of work requires computers. So frustrating.

                        Anyone have any updates on their situation?

                          bkdo check out my blog heteroforie.webnode.cz

                          im not saying its a perfect solution (better tech would be) but its significant and true.

                            8 days later

                            bkdo Hi! I am OP of this post. I've given up for now on help. While I love this forum and have received comfort in knowing others share this problem, it also adds a lot of anxiety and stress knowing so few people have made long term progress. I might pick up seeking help again when I move to a bigger city. My eyes still hurt horribly daily but the more time I spend stressing about finding a solution, the worse my mental health gets.

                            I tried to stay away from electronics (outside of the required computer use at work) completely but it's so isolating. I find myself straining my eyes on my phone just to stay connected with people. I gave up TV and movies. I read paper books for leisure.

                            I've tried a few more things since my last post to no avail. I will log on sometime in the future and log my additional attempts at obtaining relief.

                            I agree this is super depressing. It's made a profound impact on my life in a negative way, as it has for most of us here. But the more I dwell in my anxiety, the more miserable I feel. Like you, I also worry about my future. While it still hurts terribly, I have to actively work to distract myself from THINKING so much about how it's ruined my life in order to stay more positive.

                                13 days later

                                AGI

                                caught my attention when you mentioned the two types of disturbances, the muscle kind kind, and the brain/physical drain and exhaustion. I feel it so bad now that I’m running Zoom all day for school. Still I am grateful I can control my environment here at home.

                                • AGI likes this.
                                  9 months later
                                  a month later

                                  ryans Hi, I am wondering if you've made any progress?

                                  Hello. Sadly, I have not. I don't peruse this site as much anymore because it stresses me out to see how everyone is always in pain and little progress is achieved. The pandemic put a hold on seeking further treatment; the city where I was living had a neurologist shortage and then with the pandemic, no one would see me. I moved over half a year ago to a bigger city and will see a neurologist next month but I have low expectations and highly doubt I will get any answers.

                                  Of note, I had a doctor in my old city agree to prescribe me Adderall to see if it would help. I had reason to believe it might cause some temporary relief. Because one of the side effects is anxiety and sweating (for me), I have only tried it 3 times and have not yet determined if my eyes hurt worse once it wears off or not…but it does appear to help to some degree for 2-3 hours. But if it causes worse rebound pain it won't be worth it. All I want to take it for is to watch a movie once a month or something…I will probably try this again soon and can report back. I will also report back after seeing the neurologist but I anticipate I won't have much to say. 🙁

                                  Like most people here, I continue to have a lot of pain. Nothing helps thus far but lifestyle modifications and staying away from screens as much as possible…and then it feels isolating. I wish I had something more positive to report! Thanks for checking in. I will update the thread again soon.

                                      laur5446

                                      Hi Laur5446,

                                      In recent weeks, things have happened on LEDStrain. I have posted a thread about 10+ users that have success with covering/patching one eye. @martin have posted about BVD, and I think many users on this forum have some kind of BVD.

                                      Back in 2015 I could use a old screen 3*20 minutes a day, my eye muscles was hurting so much. Today I can use all screens, no tension headache, but I can feel a little hurting in my in eyes after a whole day behind new screen. That’s like nothing, so happy for that.

                                      For 3 years ago I started training with covering one eye, and that have changed what I believe how my eyes and brain communicate. Before that I have visit 10+ specialists and tried everything, nothing worked.

                                      So my recommendation is to cover one eye and look at a bad screen (a screen that don’t works with your eyes). Don’t expect it to work right away, it’s some big adjustment for your eyes and brain. I keep my fingers crossed!

                                      If you have any questions, I will happily answer them!

                                      //Mike from Sweden

                                          laur5446

                                          I guess you have tried covering one eye for some sometime?

                                          If not give it a try.

                                          It can really help you in terms of pain relief if binocular vision is your problem even if it does't fix your root cause.

                                          Many including myself do it too late, since it seems so trivial.

                                          It is also really easy to try. Give it a couple of days or weeks. You should even see some positive results immediately.

                                              mike

                                              ohh, we posted the same thing, but you offered way more detail. I keep mine to give it some emphasis. 😀

                                                9 days later

                                                I'm new to this forum, but I wanted to say that I've been in the same boat as many people here. I've had baggy eyes despite sleeping well, a lot of eye strain from computer use, etc, etc. My eye doctor talked to me about the "trigeminal nerve strain." Fortunately he actually had a testing machine that can measure that strain. He gave me the full break down, showed me the numbers and the data as a result of my testing. Neurolens had a money back guarantee, so I bit the bullet. First couple days I was slightly nauseated because I've never worn glasses before. Day 3 and on it's been heaven. I can look wherever I want, all the time! Downside is if I take them off, my eyes immediately start hurting again unless the lights are off and I'm focusing on the other side of the room.

                                                My eye doctor also has a therapy option with a high success rate. In the next year or so I may try that so I can eventually get away from needing the glasses. I got curved monitors with VA panels and high hz, and that has been helpful as well (albeit anecdotal).

                                                What it comes down to, and I think nobody likes to hear this, but eyes are complicated. Phone, TV, and Computer screens are a contributing factor. Other factors include your general health, how close those devices are to your eyes, how much work your neck is doing if you're regularly looking down instead of straight ahead. For me, the further I got through my days the harder it was to focus on anything close. I couldn't look people in the eyes during conversations simply because it hurt, and they were too close to my eyes.

                                                Neurolens are not inexpensive, and they won't be for everyone. But if you have the budget, they have a money back guarantee within the first several months to a year (don't remember exactly). Alternatively, therapy is an option. Also studying and practicing display ergonomics, learning proper stretching and exercises for both your eyes and your neck/back. What I'm mainly hoping to portray is that it's not all in the LEDs.

                                                  a month later

                                                  xelaos I guess you have tried covering one eye for some sometime?

                                                  I have tried this in the past and it did not help. I am now working from home and can do this without embarrassment so I did it again after reading this in November. I did it for 3-4 days and it did not help. 🙁

                                                  plymn10 Neurolens had a money back guarantee, so I bit the bullet. First couple days I was slightly nauseated because I've never worn glasses before. Day 3 and on it's been heaven.

                                                  Really?! I had looked into Neurolens a year ago or so but couldn't find anyone on here who had tried it. I tried a prism patch a while back with no success but I might be willing to give these a shot. I wear glasses all waking hours so I would not even take them off except to shower or go to bed. The orthoptic therapy I did didn't help but there is another kind I would consider trying. I just get SO exhausted seeking help without success but since I moved to a larger area, there could be more options to try. Also, everything is so expensive.

                                                  As a general update, I saw a neurologist last month and he said (as expected) he did not know what my problem could be but suggested an EEG and a trial of an anti-seizure or anti-migraine medication. Since these are things I have not tried, I am willing to do so. I did the EEG and (as expected) it came back normal. Good, I guess, but also frustrating as it perpetuates the fact that this illness is such a mystery. I have an appointment with him next week to start an anti-seizure drug (probably Lamotrigine). I will report back the results after I give it a fair amount of time.

                                                  If the meds he suggests do not help (and I anticipate that they won't), I may look into Neurolens again and the other type of vision therapy. If those don't help, I will just continue to try to learn to live with this horrible illness.

                                                        laur5446 Yes, Neurolens has a money back guarantee, you can confirm with the provider before. The "test" is a 2-minute exam on a computer (Neurolens measurement device, that costs the eye doctor ~$39k USD). I've had them for 3 weeks now and haven't helped me much.

                                                        Next up, I am going to see a Dr. Debby trained Doctor which I've read some have had success with after Neurolens didn't help. Her Doctor's exams are >1 hour, whereas Neurolens is 2 minutes. She has a special examination that only Doctors she has trained are competent in.

                                                        You can find a Dr. Debby trained Doctor near your area here in USA.. I will report back my experience with them.

                                                        Note: per here, convergence insufficiency treatment is sometimes "misdiagnosed":

                                                        Many people are misdiagnosed with convergence insufficiency only and VH [Vertical Heterophoria] is missed. The vertical component can be very small and specific tests need to be performed to identify these small vertical muscle problems.

                                                        I also highly suggest you read this blog about a fellow sufferer. Only a chiropractor (NUCCA upper cervical chiropractor) actually helped this person. I've heard from many folks on Reddit with our condition who got success with chiropractic care on the neck. I previously thought it was entirely quackery but it's hard to ignore these anecdotes!

                                                        Let us know how the Lamotrigine works. I am personally trying:

                                                        1. Dr. Debby trained Doctor for prisms
                                                        2. NUCCA chiropractor for the neck
                                                        3. Cefaly device
                                                        4. A different Visual Therapist
                                                        5. Medication (last resort)
                                                            4 months later

                                                            Just an update for those interested. I can't really take Adderall because of the side effects and my doctor in my new city doesn't want to prescribe it. She referred me to a neurologist and I had two EEGs. One normal EEG and the other I did while looking at screens that hurt my eyes. Both results were normal. Luckily, the neurologist does believe me but admits to not knowing what the problem could be. He said he'd like to attack the problem as if it were a migraine issue just to see if migraine medications work.

                                                            I have been taking Depakote since February 8, 2022…I quickly worked up to 1000mg starting on February 14th and have been on this dose since. There are times where I feel like maybe it is helping but times where my eyes hurt just as much as usual. So I do have the occasional better day but I am not sure if it's due to the medication or not. I was on vacation in another country and the pain was less but I think it was because I was so busy and distracted and not using screens much. I have zero side effects from the Depakote but I don't think it's worth continuing to take if it doesn't alleviate my symptoms. I guess the true test will be if I come off of it and my eyes hurt 10x worse! I have a follow up appointment with the neurologist next week and will discuss next steps and will likely try a new medication.

                                                            I now live in an area full of research hospitals and am considering making an appointment with a research based neuro-ophthalmologist or neurologist…expectations would be low but might as well try. And I might look around for vision therapists. Everything just costs so much.

                                                            Long story short, still looking for help. 🙁

                                                            I will post again when I have another worthwhile update.

                                                              dev