My treatment progress and search for solutions
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AGI Could you please say which beta blocker?
Propranalol. I started at 60mg, then went up to 80, 120, and settled at 160. I have been at that dose for about 10 years now. It's not a cure by any means, but as I tell my nuero, it's better with it than without it. And as an bonus I have great blood pressure
AGI It seems to be an anxiolytic, does not it?
No, it's a beta blocker. It's used primarily to treat high blood pressure. It is also indicated to help with migraines. I was prescribed it to help with the migraines
Any side effect?
When you first start using it, or whenever your dosage increases, for about a 3 days you feel awful. You have zero energy, your arms and legs feel like they are made of concrete, you are sluggish. It sucks. After you adjust however you feel perfectly normal. Your heart rate is overall lower and you have a few less bpm and will get winded a little faster than normal. It is also dangerous to skip a dose since your heart adjusts to running on 1/2 the adrenaline so going back to normal is risky.
@ensete Thanks.
Are you "intolerant" also to LED and fluorescent lighting?
If I remember correctly, you wrote somewhere that your problem is color rather flicker or dithering. How did you find it out and what does that mean? Are there colors that your brain cannot process?
Once I was tested for Irlen syndrome but I could not tell a difference between the various lenses I was offered to try. I mean, within the couple of minutes that the test took, it was impossible to make an assessment. Have you tried glasses that filter out a specific range of the visible spectrum? And have you ever experienced photophobia from intense sunlight?
I am a sinusitis sufferer too by the way. And AC can be as bad to my body as offensive lighting.
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Are you "intolerant" also to LED and fluorescent lighting?
That depends on what and when. Here's my history:
When I first encountered symptoms, it was a little over 15 years ago, and I was triggered by CFL bulbs. I should mention that standard tube fluorescent did not cause me any issues, just the compact ones. That sent me down our long journey. At the time LED lights were not mainstream, there was no such thing as LED light bulbs, it was still an incandescent word.
As the years progressed, incandescents started to get more and more replaced by CFL's. This led to the question that to this day I have not answered, was I born with this condition and just never noticed because CFL's weren't invented until later in my life, or was it something I developed? Probably never figure that out.
Anyway, as the years went on and my misery progressed and as I started realzing how rare my condition was since doctor after doctor could not help me, I started on migraine treatments. Most did nothing, but propranalol helped a little. A few years after that I was tested for Irlen syndrome and "daignosed" (as much as one can be diagnosed for a syndrome) and when through the lens test procedure and ultimately get a pair of lenses made that 100% cured my condition. For 3 months. After that, they stopped working, and despite multiple attempts at re testing and hundreds and hundreds of dollars on new lenses getting made, I was never able to find a lens color that made any help at all, so I abandoned that road.
It was around this time LED's started coming out, and CFL's started waning in popularity. I immediately noticed that LED's were much more hit or miss, some LED's were instantly pain inducing, but some LED's cause me no issues whatsoever.
Around that time I started down my nuerofeedback and biofeedback treatment, and this is also when smartphones started coming onto the market and my issues with those screens started happening. Much like LED's some were fine, most were terrible. The nuero and bio helped a little more in my CFL issue but not with the LED issue. At this point in my life, CFL's don't bother me much at all, not that it matters since they have basically vanished from the face of the earth since LED's supplanted them.
For LED's, some things have gotten better over time, when car headlights switched to LED's it was a REAL problem. But nowadays LED highlights rarely cause me any issues at all. After one of my sinus surgeries I was put on a daily anti allergy medication and this helped with the LED sensitivity. It might be the medication, it might be the surgery, it might not be anything I did, maybe the LED's just got better or something changed in my brain that made it not as bad.
The primary irritant at that point became screens since everything in the world was moving to digital displays, phones, tablets, thermostats, credit card readers, cars, you name it. And most of them caused severe eye strain. I was diagnosed with convergence insufficiency and went through vision training, which 100% cured me for credit card terminals only. No improvement on any other digital screen. Explain that one.
The color connection came up when I found I was able to take a screen that was arming me (PC screen) and completely eliminate the issue by loading the correct ICC profile. Like 100% eliminate the issue. And certain colors of web pages (specifically a very light gray, #FEFEFE is the hex code) will instantly trigger a migraine. Lucky for me Microsoft picked this color as it's new toolbar background color in Office 2016 with no way to change it. Thanks Microsoft. Also lots of bright white can cause me issues, which was awesome when Google decided that Android should no longer be based on dark tones by instead be a retina searing white.
So thats roughly where I am today. I've seen countless doctors in 7 states and have learned no one out there has "the answer" we are looking for, and just hoping my neurologist is correct in telling me the most likely outcome is that I will age out of this around my mid to late 50's to 60's.
I am a sinusitis sufferer too by the way. And AC can be as bad to my body as offensive lighting.
This is just something I have observed. Nearly everyone I have met with our condition also seems to have severe sinusitis. I have had 3 sinus surgeries myself. I met one person who had identical visual symptoms to me, and had unrelated surgery on his pallete, and to his surprise his lighting and screen issues were 100% cured after the surgery. My pet theory is that the nerves responsible for the pain we get run through the sinus and pallette area (it is a heavily enervated area) and reducing inflammation there may block the brain signals causing our issue? Who knows.
I also know that for some people stuff like flicker, dithering, and PWN can cause issues, but for me they are not. Which indicates different triggers are affecting different people and then producing the same symptoms, or triggers are getting misidentified and leading us down rabbit holes. At this point in my life I have abandoned any hope for a "cure", and have adopted a strategy of leading as pain free a life as I can: when I find a setup for a computer, TV, phone, whatever, that causes me no pain, I NEVER change it unless I absolutely have no choice. Yes that means I have a 7 year old smartphone and a 8 year old TV and a 12 year old car with no digital displays and I will never use Windows 10, and if anything breaks and I have to find a replacement its ruins my life for a while, but thats just the hand I got dealt. There is no feature, benefit, new capability, performance increase, or anything that is worth being in pain for. Just my philosophy
And AC can be as bad to my body as offensive lighting.
I had to install an $18,000 mini split system to re mediate my issues with HVAC.
That was a lot of typing.
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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.
bisk89 I came across "ayurvedic glasses"
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.
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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.
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?
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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.
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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.