My treatment progress and search for solutions
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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.
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
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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.
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.
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:
- Dr. Debby trained Doctor for prisms
- NUCCA chiropractor for the neck
- Cefaly device
- A different Visual Therapist
- Medication (last resort)
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.
Please post of you find anyone worthwhile. I've seen over 25 specialists across 7 states in ever field (optometrists, ophthalmologists, neurologists, nuero ophthalmologists , plus all manner of snake oil "vision specialists") and other than being very good at seperating me from large sums of money, none have been worth a damn in actually helping
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@laur5446 How are things going for you? I briefly read your story. As I understand, you still have symptoms of eye pain when looing at LCDs and was diagnosed with convergence insuffuciency some time ago. Did you by any chance also have the feeling of image misalignment? Like two images were out of sync? This is something I have. I think I might have something similar with LCDscreens as you. Whenever I look at them with higher brightness, I get stabbing/burning pain in both eyes. That's something I have for about 2 years already, But 3 months ago I also suddenly got dizzy and felt like something was wrong with my brain/vision. Saw plenty of specialists, multiple eye docs, neurologists and ENTs, did MRI and CT. It turned out I had asymptomatic sinusitis and large, 3cm cyst in my sinus. Cleaned that with FESS and Caldwell-Luc surgery 2 weeks ago, but eye symptoms are still there. Now I'm trying to tackle the problem as if sinusitis wasn't the cause. Pre op, about 1 month ago I was already diagnosed with convergence insufficiency by two docs and will have another appointements next week. I will probably start vision therapy very soon, but after reading your story I'm now afraid it won't help. This condition succesfully deprived me of being useful to society and looking for answers is all I do now.
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Very interesting, that a lot of guys from here have sinusitis. I ill with sinusitis too. I have curve nasal septum, and doctors say that i should be surgeried(septoplasty), to fix it(make it flat) and it should fix my sinusitis. But very interesting - does sinusit fixing help somebody to win eyestrain?
mazury Hello! Things are about the same for me. I took a break from seeking treatment/help as I have other things going on (travel/unrelated surgery/etc). The latest updates are that the neurologist had put me on Depakote in Feb 2022. I took 1000mg for 3 months…it made my hair fall out and did not help my eyes so I quit taking it. He then put me on 60mg Propranolol ER in late June 2022. I only took it for a month before quitting--I'd ideally liked to have given it 3 months but I was worried about weight gain so I quit taking it. I have been preparing for an unrelated surgery so I have not been back to the neurologist to discuss other medication trial options. It seems pointless but I thought I should try everything I can, right?
I am not sure what I will do next…maybe seek the other type of vision therapy I didn't do…but I was told I no longer have convergence insufficiency by the last doctor who sold me their vision therapy. Maybe I will find a research based neuro-ophthalmologist. In the meantime, I just do the best I can every day to deal with this awful condition.
Re: the feeling of misalignment…I don't usually experience that unless I actively try to see double. Very interesting you were diagnosed with sinusitis! I think they would have seen that in my MRIs if I had that (I hope so, at least). I hate that the surgery did not resolve your eye symptoms.
I relate to your despair. It's so stressful. I think it's worth trying the vision therapy--I may do it in the future, as well (apparently there is more than one type and I only did one). Even if it doesn't help, I will be able to say I tried. It's worth trying everything we can. I have noticed that while we all have similar symptoms, we also all have difference in symptoms…some people have found relief in things that haven't helped me when I tried them. So maybe the therapy will help you. You won't know unless you try.
Also, for me, the more I obsess over finding a solution, the more anxiety and distress I experience. I have to limit my time on this site for that reason. I will update my post again as soon as I try something new! 
I would love to hear how vision therapy is for you if you try it.
I too have a curved nasal something and I was also told to get a surgery for it. It might be linked with internal skull pressure. I once described my symptoms on another unrelated forum and one guy said he experienced the same when he had covid, linking sinusitis with eye strain.
Neuromancer there are many guys with this problem and eysstrain. I think i will try this surgery next year. BUt of cause there is no any guaranties. cause i had a conversation with a man on another forum, and he told me that surgery helped him to improove breathing, but gave nothing to is eyes problem (
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ensete Quite depressing answer. Considering the fact that my condition makes my life totally miserable. I can't imagine having this for the rest of my life, I would have to literally become a different person and reprogram myself. You had CI. Did vision therapy fixed that 100%, that is did they re-tested your CI after therapy and you improved your fusional ranges and other indicators to normal values?