Hello all, I just wanted to make a proper introduction post to the community.
This will be long but I would greatly appreciate if someone would read everything and give advice on what to do next or if I could be doing something more.
I will provide a brief timeline of events and provide background as to what is currently going on in my life.
Also, I will explain why I feel the way I do despite having no history of mental health problems.
My name is Caleb and I am 24 years old.
I live in the U.S. by the way for context.
I was a bit active in the chatrooms and have made a few comments wishing people well in their possible last threads but I try to not get involved as it's a lot of emotional weight.
Honestly I don't know what to say as I'm not a medical professional.
I lurk on this website a lot to hear various stories and am grateful that no one encourages others to do the act itself.
Everyone is friendly despite the gloomy atmosphere.
I have talked about my situation in the past through leaving brief comments and chat but want to lay it out here.
I had Wavelight Optimized LASIK surgery done on August 6th, 2021.
Overall, the surgery went well but almost a year out I experienced complications including slight ghosting vision, regression in prescription and the need to wear glasses which was disappointing to say the least considering I was going to spend $6282 on the procedure. I was foolishly lured into doing a payment plan which involved a loan to cover it by the way which was the biggest financial mistake of my adult life secondary to taking a loan out for college then dropping out after a semester but that's another story.
I was able to live my life with no real issues and could work a full-time job, spent time with friends and whatnot before I had to move another state but still succeeded there too relatively, was in the process of learning how to drive and become a full adult as I still had a lot of work to do.
Anyways, last April is when I had to suddenly quit my full-time customer service job, which I was very upset about as I enjoyed working there overall and gained more experience working in the industry.
I didn't get along too well with my co-workers but management and the clientele were always happy to see me.
I lived in another state, felt isolated from my friend group which made it difficult and the household was full of introverts who all did their own events plus activities.
I would talk to my best friend daily and was able to function a lot better in addition to playing videogames but the ghosting symptom (slight vertical double vision) killed my enjoyment, at least back then I never experienced real diplopia and I could simply do more in general.
I remember walking to work and the slight double vision would be bad, seeing ghosting of lights, people and more while out there it was a bit dangerous looking back but I persevered and still did everything regardless.
However, I still played videogames with my friends and watched videos together with no problems.
I had a lot of books I never read as well because of it unfortunately.
I felt like a roommate since I interacted with the family less and less as they didn't really care or want to talk about the situation, especially near the end before I decided to leave and I had to pay about $650 per month for rent which my coworkers stated was a lot...couldn't even see my phone like that but still had to make that last payment.
There was no issue paying the rent, I was a fully functional adult who did everything myself back then and I was happy to do so but I got annoyed as most of my money was spent trying to desperately fix the problem before I had to change everything.
I also spent money getting necessities for the household and have a caring heart in general.
I had a gut feeling that my vision was getting worse, for context before the slight double vision I experienced worsened significantly and I would start to see it more often, usually through any lights at work and silhouettes on people.
I saw an older woman sitting out near the fountain and a slight outline was appearing above her, this was how bad my ghosting was.
I vividly remember going to one of my provider's appointments and seeing a ghostly outline of all the construction workers on the site, I knew in my chest that everything was not going to work out long-term and something deeper was going on.
Here's a picture that explains what the ghosting was like, now imagine working with that and doing full-on customer service in addition trying to do everything right.
Yeah, it was difficult to say the least...one co-worker hit the nail on the head and stated that I wouldn't be happy until it was all fixed or improved upon which I readily agreed and still feel this way today about a year later.
Due to my ocular rosacea which developed after surgery there would be episodes at work where my eyes would suddenly burn horribly and I would have to run to the bathroom, it was pretty bad and I had to do a whole routine of quickly wetting my paper towel and using it to cool my eyes down during a flare.
Looking back, I think I pushed myself too hard and the environment was very bright in addition to a lot of computer usage which made my dry eye and ocular rosacea worse, further compounding the problem.
I had to make the hard decision to move out early because I knew that I could not work anymore which was very unfortunate but necessary.
I moved in early May, everything was fine and I was grateful to be back in my hometown.
I needed to take a break while I figured out this medical situation which was the correct decision.
I hung out with my friend group, had a fabulous time around a week after I moved.
Little did I know that after that event my vision problem would drastically affect everything... it would be the last day I was truly happy and carefree.
Shortly after this, I started to experience horizontal double vision for the first time and everything began to blur intermittently every two to three seconds.
The easiest way I can describe it is like this Pikachu GIF, as my eye would turn this would occur.
gifdb.com
This was very scary considering I had no idea what was truly going on and didn't know if it was something neurological or serious in nature.
After doing research on what could possibly be causing my condition I decided to see a behavioral optometrist in August.
That visit revealed a lot but I was in shock about how serious the situation was, five different diagnoses. (Spasm of accommodation, bilateral, accommodative component in esotropia, alternating esotropia, diplopia, and visual discomfort, bilateral)
During the appointment I had to look at the Snellen chart but my vision was highly unstable, blurring every two to three seconds but my provider stated to still try and ended up giving out a bogus prescription as he should have done a cycloplegic refraction the first time.
Even looking back at the report, it was stated that they do not cure the visual deficits which should have been a red flag but I was naive and desperate.
I tried using them in the office but they really didn't help and I tried to stick it out for two weeks but no dice.
Anyways, I wanted to try prism lenses to get rid of the intermittent double vision and asked politely if I could.
I had another "RX check-up" appointment in September and literally even at the highest diopter possible (55 for Fresnel) my eyes refused to cooperate, I wasn't really disappointed and always keep my guard up when it comes to actual treatment but it was still annoying considering they work for a lot of other people.
I tried to do some digging and found out about Atropine 1% sulfate drops which apparently help with the blur induced from the spasm.
I mentioned it to him but apparently my behavioral optometrist "would not use it on his own daughter", remember this for later.
I stated then that I cannot function with the intermittent diplopia and was a lot more honest since it was truly disabling and he placed tape on my glasses that helped immensely, this is called occlusion therapy by the way.
This was great and improved my function quite a bit as I finally had something besides closing an eye, seems like common sense but I was not sure if patching was safe or not long-term as apparently in some case for adults it can actually worsen their vision long-term.
Thanks to an online friend, I was able to get a translucent patch which helped a lot.
Also, I had to get full blown MRI/MRA checking various areas of my brain to rule out anything serious and the slip was intimidating.
I was very worried because my symptoms seemed to be neurological and I felt off in general, thankfully it was clear but irrationally I was a bit upset that it didn't really provide more info.
Later on, I read the report and apparently vision therapy would take 1-1.5 years of weekly sessions and $20,800 which is a lot of money and time.
Insurance does not cover it of course and I would have to do it through a payment plan, there is no guarantee that it will improve my vision as well.
The good news is that he wrote a strong disability letter that will definitely help for my case with SSDI and I'm genuinely thankful for that.
He also could tell that I needed to be on disability due to my visual impairment.
What was eerie too during that check-up was that he asked if I had suicidal thoughts or not because apparently one of the lights can induce it somehow or exacerbate them?
I still powered through the bad vision, which at the time was strong horizontal intermittent diplopia mixed with it blurring roughly every two to three seconds.
Now, imagine having this vision up until November 13th and barely scraping by, knowing that it's nothing fatal but very worried about what's truly going on and having to be very careful with doing literally every task like a geriatric old man.
Six months of being impaired with no way to obtain clear vision, throw in some horrible intermittent double vision too in addition.
Finally, on November 13th my pediatric ophthalmologist figured out how to get rid of that dreaded blur through a drop called Atropine 1% sulfate.
She used cyclopentolate during the check-up and I was able to see the Snellen chart easily after it relaxed my ciliary muscles and was prescribed bifocals.
At last I could see clearly without the blur but still was experiencing horrible double vision and unfortunately there are two side effects of Atropine itself.
1. Near focus is essentially obliterated and I must use bifocals to read up close.
2. They make my dry eye and ocular rosacea worse over time and burn when putting them in.
There is more and I will elaborate if needed.
I received a prescription for bifocals as well and got them, they are really hard to get used to though.
I have to look through above the line just to see correctly for distance and have to use the bottom portion for reading and whatnot, the only way to get rid of my intermittent double vision is to patch.
If I go past the line I experience a straight up blur effect.
It's a lot, even when I use Atropine.
I pretty much have one working eye that's segmented, it's super annoying and being half blind would be more appealing as my eyes cannot really work together.
I had a follow-up visit with my pediatric ophthalmologist and tried to educate myself greatly about the topic. I also was brutally honest, even stated that as a young man I shouldn't have to work so hard for something basic, that being single and clear vision in both eyes.
Also, she briefly mentioned that Atropine 1% sulfate drops could be making the crossing worse, which was a bit frustrating but there's always one minor issue.
Apparently to her, vision therapy would not help my case at all and she didn't recommend it further complicating the issue.
During this visit, my pediatric ophthalmologist provided a referral to a top adult strabismus surgeon as she did not know what to do further.
I appreciated the honesty and she has always been sweet, definitely planning on going back and paying the balance when I can.
She will also continue to sign forms as necessary too.
Next, I saw the top adult strabismus surgeon and that was one of the longest days in my life.
I had to go to a large hospital while impaired and of course they had a full blown TSA checkpoint style which is amazing for someone who is disabled.
I use a cane when I go out and I had to use the bathroom but of course the biggest wheelchair ever was blocking the entrance lol.
That exchange was frustrating, then a woman asked if I had trouble seeing which was nice...I didn't realize going through something like that is much harder when visually impaired.
Anyways, I do everything and am very honest about how the situation has impacted my life as I don't have much left to lose.
Again, I am facing long-term disability due to this issue.
The technician was easy to get along with but I always keep my guard up about getting actual help so I don't get disappointed because when it comes to the meat and potatoes, everything usually falls apart.
He had to get an assistant in to help and I already knew that something annoying was going to happen.
They tried prism lenses but of course, no surprise to anyone that they didn't work.
I detailed what has been going on and had a moment (cried) because I had the idea of it being permanent in my mind for a while and couldn't bear that to be the case as it would affect my life so much not being able to see properly.
I mean, having double vision literally every step I took is just rough, anyone could understand that.
Anyways, I get to the provider and the whole vibe shifted...dude's bedside manner was nice enough but severely lacking.
Even though I mentioned everything before it seemed like an interrogation and he claimed that in his long career there had only been a "handful" of cases and the woman who had a similar case needed to have her strabismus surgery reversed entirely which wasn't promising at all.
Apparently the root of the problem was psychological but keep in mind there was nothing psychological of that nature impacting myself at the time, only this impairment from hell where I experience double vision every step I took...that wears a person out over time especially if you're very desperate for a fix knowing how much is blocked off inherently.
He said unprofessional statements and asked if "my girlfriend left" which caused the spasm, literally shushed me when he was typing up the report since I was excited about finally finding out the reason why prism lenses worked.
You know that heartbeat feeling that can occur when you're about to pop off emotionally and say something a bit out of line?
I got it and most likely would have but thankfully was smart enough to bring a form for Social Security which I needed signed, the Lord stated to temper my tongue so I did.
He also stated that I shouldn't be reliant on Social Security benefits even though I struggle to function daily, which was hilarious but in my head I was low-key like whatever old man, if someone had my level of impairment they couldn't "macho" there way through everything.
I'm not a slouch either and worked hard before, being an involuntary NEET is a foreign concept and I can't enjoy it due to my vision being impaired.
I have no choice because all of my providers are stating that I can't work for at least a year.
I try to be as vocal as possible regarding my situation to improve it but there are literally no bones thrown to get better, it's like every path contradicts itself meanwhile I'm struggling way more than I should.
His professional advice was to patch and alternate both eyes, apparently it would take anywhere from two to twelve months which ties into the waiting game yet again.
Literally what my behavioral optometrist stated all the way back in August, he stated in the report that I don't need to see him again and that was it.
I walked in there ready for surgery or something huge but walked out with nothing but at least I got that form signed, it's like everything is pointing to getting disability but not being better enough to do what I used to and everyone thinks that's okay.
One time I tried wearing my old single vision glasses when relatives came over, I was a lot happier but got a nasty headache afterwards which was a reminder of what happens and why I didn't try that before.
After that, I had to make another appointment to see my neuro-ophthalmologist for a second time because apparently I compromised the whole exam by taking the Atropine 1% sulfate drops which was another waste of an appointment.
I literally clasped my hands like a meme and asked if he could support my disability case to try and get something out of it.
Of course, I have to take initiative and bring a MRI/MRA physical disk even though I know it's completely clear.
I try to take one positive aspect out of something like that and at least I got experience using Medicaid transportation, yippee but I still can't see well enough to do what I want as usual.
Keep in mind the office never reached out to state this prior and it's almost two hours to just get there, which made the whole trip a waste of time for the most part.
For my appointments, I am always as vocal as possible.
I state that I'm trying my hardest to get rid of my intermittent double vision to go back to work as soon as I can and enjoy hobbies.
I remember vividly, in fact, telling the technician that all I want to do is "see single and clearly in both eyes as a young man", that's it with no gimmicks or hard work.
I was already annoyed about the exam not being performed and just smiled when the technician stated that I couldn't do the full test as my luck dealing with situation can be quite awful...I get blessed in other areas but for this one I swear the devil cursed my situation.
Overall, I'm pretty composed and quite cordial when appointments don't go my way as I know a running trope is one minor issue always ruining something.
After a while, you get hardened after providers don't know what's going on and keep expectations low.
Anyways, my provider stated that it will be "temporary", he agreed with my top adult strabismus surgeon and stated to patch and reinforced that it is a temporary situation.
I doubt this personally as my pediatric ophthalmologist signed a form that was from a credit bureau asking for proof of disability and it stated January 2026.
This is what my behavioral optometrist suggested a while back in August when I stated I cannot function with the diplopia and keep in mind for most patients this only a short-term solution.
I've done a lot of research and occlusion therapy is a temporary solution at best and will not fix my situation or provide improvement over time alone.
Currently, I have to be off Atropine for 30 days, had to take initiative and reach out to the office and find out myself of course.
I tried this before after reaching out to my pediatric ophthalmologist and the first night was great! No side effects and I was going to do it once a week.
Suddenly, everything got worse after simply stopping the medication for a night.
I began to see two blurry images when my eyes relaxed and the blur became more intense across the board.
I instantly took it as soon as possible the next day after experiencing these brutal side effects and I learned that I'm not really functional without it, unfortunately.
Currently, I am without my drops and the next appointment is on the 12th.
It's been very rough and this is how my vision currently is and what I plan to tell my neuro-ophthalmologist about.
I wake up and literally everything has a faint blur to it and I have low vision pretty much from the get-go.
I also have the intermittent blurriness too, found a picture that accurately explains what happens when my eye shifts even though I don't have amblyopia.
Also, the intermittent double vision is strong and horizontal as always too.
Without my Atropine 1% sulfate drops, everything splits into two blurry images if I let my eyes relax for two seconds.
This wonderful woman uploaded a video of her experience with double vision and it's pretty much exactly what I experience, now imagine this but with two blurry images.
I also have another example as well too which is pretty accurate.
The Atropine makes them clear.
1.
2.
Anyways, my life currently has just been about living moment to moment with a brutal impairment and trying to get through the day.
I have trouble walking and what should be a basic task becomes much harder.
I try to do as much research as I can since I've stopped taking Atropine temporarily since April 9th.
Everyone states that I'm doing the best I can but the last great memory I had was hanging out with my friend group last May, everything was amazing and ate great food in addition to having no visual problems, only slight ghosting but that was all.
It's true though, I've accomplished a lot this past year and obtained Medicaid for myself, took initiative including getting the ball rolling for disability benefits and went to countless providers trying to fix my problem.
My question is this however, what is the point of getting a check and if I can't even see single and clearly in both eyes and have to be visually impaired for a long time.
There hasn't been a day since hanging out with my friends where I felt truly confident with the impairment and could do anything like I used to without feeling restricted or struggling.
I can't simply play a videogame, watch movies and television, read a book and whatnot anymore, there's no quality of life anymore and I'm just trying to get through the day and have to live moment to moment as my vision is really unstable.
That's a luxury at this point, obviously yes I can still type but I've been doing it over the course of a couple days and it's still difficult.
I just don't like my situation at hand, was forced to be an involuntary NEET over something I'm trying my best to fix but nothing ever happens.
I get a "manic" moment (not making fun of people who really experience that) where I want to do so much including reading books, television shows, movies and playing videogames but it is quickly shut down due to the brutal reality of being a visually impaired young man.
I want to work and help people out as much as I can but I feel like a geriatric old man in a 24 year old's body.
It's ridiculous and I hate my weird vision.
For my next appointment, I'm being straight up and telling them that without the drops I really can't see and need some type of treatment, the stakes are high and if I can't use Atropine long-term I will be stuck.
I have to be a bit out of character but I'm tired of everything being limited daily when I know something can be done, the specialists I'm seeing obviously think I'm much more functional which is annoying as hell.
I'll be honest and state that I've changed as well because I have to spend so much energy on just functioning, I really don't care about much else except fixing my vision and don't want to talk for hours and hours about the same topics everyday.
It's like waking up with barely functional vision in a survival horror game and just trying to get through the day, which seems hilarious at first but you can't really take life seriously and I simply do that to cope.
With true impairment, you can't do what other people can and feel excluded in a way which also sucks.
For example, my friends were proposing the idea of watching a movie and playing a new game that I'm also looking forward too but with the blurred vision and diplopia I simply can't do it.
They haven't really hung out as far as I know except one time but I keep my best friend informed as that's the least I can do.
I would rather be honest with him and my group then state that everything is fine and I'm doing well.
I know they don't want to hear the same thing everyday and I honestly don't blame them.
I wish I had a timeframe on when I'll get better and I could get back to doing what I want.
As a recap, here's the treatments I have researched.
Prism lenses - They simply do not work, here's why.
1.
2.
Vision therapy - I do not mind trying vision therapy out as a possibility but in my disability letter it was stated that it there would be no guarantee and the service would take 1-1.5 years of weekly sessions. It's also very expensive at $20,800 in total and obviously not achievable before getting disability payments of some sort. Also, my pediatric ophthalmologist advised against it as well. I might try it anyways once everything is financially viable as I don't think the other treatments will work.
Strabismus surgery - I met with a top adult strabismus surgeon as stated above and one woman who was similar to my case had it done and everything was reversed eventually. I could get a second opinion but was surprised on how it wasn't an option. Also, I forgot to mention that the pediatric ophthalmologist also has a surgeon too but apparently she wasn't comfortable handling my case.
Botox - I brought up the idea to my pediatric ophthalmologist and she stated that my deviation is too large.
I feel like I'm trying everything but I'm condemned to dealing with this impairment for a long time, really going to emphasize how dysfunctional I am at the next appointment and may have to be more honest as I feel like my sight is getting worse.
I'm literally living moment to moment due to how bad my physical impairment can get.
When I say I can't read, play videogames, watch television or do any of my hobbies I'm not exaggerating but these specialists must think so for some reason which is slowly building up trauma from them not listening and changing my emotions.
How should I approach this next appointment with the neuro-ophthalmologist?
I'm thinking on being 100% honest with the technicians and himself like this:
"How are you?"
"I'm not doing too well without the Atropine and struggle to function, your face is blurry and a lot of my life is living moment to moment."
"Can you see the Snellen chart?"
"No, I simply can't as it's all blurry and I experience severe, horizontal double vision to the point of being borderline non-functional."
Anyways, I wouldn't be posting to this community for nothing.
If my condition is actually more permanent and doesn't get resolved by the anniversary of my surgery (August 6th), I am considering the idea of committing suicide.
I'm religious but hopefully the Lord will understand why but honestly I probably won't do it as I have a lot of willpower and tenacity to keep going no matter what happens.
If I were to, though I would go for sodium nitrate primarily or falling backwards off a high place.
To be honest, I like the idea of falling a lot better especially after reading someone's comment about wearing a blindfold and earplugs.
That seemed super peaceful and tranquil.
I visualize myself just standing on top of whatever building, sticking my arms out and just falling without having to deal with my impairment anymore.
I'm not sure what time of day would be best, maybe in the night while it's pouring rain?
I know it sounds like romanticization of the act and I apologize in advance but it's comforting in my head...like one final "whatever" before I go into the abyss.
Sodium nitrite seems like a good alternative but I would struggle on having enough time to do it and would have to be inconspicuous.
It's unfortunate because I have a friend who got really messed up over LASIK surgery, his surgeon literally failed to treat his condition and he can't even look at his own face in the mirror...it's awful.
He's stuck like that too for the foreseeable future, can see a bit but nowhere near enough to back to his old life and I genuinely worry for him as he has attempted before.
Another close friend that I met on a Discord server jumped from a building and tragically left his mom and sister behind.
I was in shock and still am reeling from that because even though I didn't know him personally it was very unexpected.
Apparently someone on Facebook told him to kill himself too which was horrible and goes to show that some people do not have good intentions.
Anyways, to end off I'll describe both the positives and negatives of what's been going on.
POSITIVES:
1. I have learned not to really care about what other people think since I have to prioritize my function above anything else, obviously different that I'm temporarily off my Atropine 1% sulfate drops but it is worth mentioning.
2. I am much more grateful for what I have considering the limitations of my impairment.
3. I now understand what people with visual impairment go through and developed more empathy as a result.
4. I know that if I play the long game, I will get disability benefits and can easily get my own place regardless of what people say or do.
5. My medical issue is narrowed down mechanically and although I don't have a set path for actual treatment I have a greater understanding of what is actually going on.
6. I have found new hobbies such as joining sweepstakes, giveaways, listening to music plus dancing but this is simply to cope and the former is to prepare for the future where I can hopefully see better to enjoy what I used to.
7. Despite my horrible situation, I have still never done drugs, smoked or drank alcohol. However, I still deal with another vice that I am working on that is directly linked to the stress induced because of my issue and most young men probably go through it.
8. I still take care of myself and still feel good physically, tried to lay in bed for longer and I simply couldn't do it as I need to feel accomplished and help others in some way.
9. I'm perfectly content not being the "hero" or "main character" and don't mind being in the shadows while I figure this out.
NEGATIVES:
1. I feel like a kid in a candy shop which is an analogy for being restricted due to my physical impairment, I can never wake up and do exactly what I want to do and it's just a matter of doing small tasks and desperately looking forward to the next appointment.
2. A lot of my life currently is based on waiting for a chance to boost function, progress in my disability case but I'm not having fun doing so and everyday is difficult.
3. My last good memory where I didn't have the vision issues was hanging out with my friend group last May and having a wonderful time. After that, my symptoms increased dramatically and I had to put everything into building up my case, visiting providers and focusing on functioning. Also, to add on to this old memories of working and simply what I used to be able to do is very painful and fresh.
4. I hate not being able to do the hobbies I want which includes watching television, movies and playing videogames without struggling immensely and this obviously impacts my connection with other people since I can't relate and have hour long conversations about whatever's going on. I get very annoyed that I have to work so hard for something that should be basic and don't want to talk when I'm having trouble just being able to see properly.
5. I moved on from this a while back but sometimes I find myself being jealous about how unrestricted other people's lives are. A lot of people can do immoral activities but see perfectly and generally do all the hobbies that they like. I think the following, "Psh, must be nice being able to drive, watch movies, television or play videogames etc." It's a very toxic mindset that I find myself going back to but my pet peeve is when people complain but still have an able body and whatnot. My impairment makes life so much harder and I strongly dislike when people complain about their situation but I still see them having fun on social media i.e. going to bars, places and all these other outings.
6. It's very sad telling people that I don't know when I'll get better, further pushing them away. I'm taking all the initiative I can to fix my medical issue but hardly anything has changed and people quickly get tired of myself complaining but I need to in order to cope, it's a double edged sword.
7. I feel like I have a lack of direction, my providers are going towards the disability route but I'm not satisfied with my level of function either and want to work in addition to drive. I was still learning on how to do the latter but still.
8. I've become more cynical of the world after learning that my surgery was totally unnecessary and being misled in general, especially when it comes to the specialists I have interacted with.
9. If you are disabled either mentally or physically, expect less help from people in general as most relationships are purely transactional in nature and a lot people just care about their immediate family and no one else.
Anyways, that's pretty much my situation and how I've dealt with it, if anybody has dealt with a medical situation or visual impairment that has changed their life drastically I would appreciate some insight and what to say at my second neuro-ophthalmologist appointment before I end up admitting myself to a hospital because what I'm asking for should be given, not earned.
I'm really not suicidal but just have thoughts on sodium nitrite plus falling backwards as methods if my vision problem is not fixable and I'm stuck forever with it as I don't know how long I can deal with being deprived of a basic function.
Thank you all for reading this post, have a blessed day.
This will be long but I would greatly appreciate if someone would read everything and give advice on what to do next or if I could be doing something more.
I will provide a brief timeline of events and provide background as to what is currently going on in my life.
Also, I will explain why I feel the way I do despite having no history of mental health problems.
My name is Caleb and I am 24 years old.
I live in the U.S. by the way for context.
I was a bit active in the chatrooms and have made a few comments wishing people well in their possible last threads but I try to not get involved as it's a lot of emotional weight.
Honestly I don't know what to say as I'm not a medical professional.
I lurk on this website a lot to hear various stories and am grateful that no one encourages others to do the act itself.
Everyone is friendly despite the gloomy atmosphere.
I have talked about my situation in the past through leaving brief comments and chat but want to lay it out here.
I had Wavelight Optimized LASIK surgery done on August 6th, 2021.
Overall, the surgery went well but almost a year out I experienced complications including slight ghosting vision, regression in prescription and the need to wear glasses which was disappointing to say the least considering I was going to spend $6282 on the procedure. I was foolishly lured into doing a payment plan which involved a loan to cover it by the way which was the biggest financial mistake of my adult life secondary to taking a loan out for college then dropping out after a semester but that's another story.
I was able to live my life with no real issues and could work a full-time job, spent time with friends and whatnot before I had to move another state but still succeeded there too relatively, was in the process of learning how to drive and become a full adult as I still had a lot of work to do.
Anyways, last April is when I had to suddenly quit my full-time customer service job, which I was very upset about as I enjoyed working there overall and gained more experience working in the industry.
I didn't get along too well with my co-workers but management and the clientele were always happy to see me.
I lived in another state, felt isolated from my friend group which made it difficult and the household was full of introverts who all did their own events plus activities.
I would talk to my best friend daily and was able to function a lot better in addition to playing videogames but the ghosting symptom (slight vertical double vision) killed my enjoyment, at least back then I never experienced real diplopia and I could simply do more in general.
I remember walking to work and the slight double vision would be bad, seeing ghosting of lights, people and more while out there it was a bit dangerous looking back but I persevered and still did everything regardless.
However, I still played videogames with my friends and watched videos together with no problems.
I had a lot of books I never read as well because of it unfortunately.
I felt like a roommate since I interacted with the family less and less as they didn't really care or want to talk about the situation, especially near the end before I decided to leave and I had to pay about $650 per month for rent which my coworkers stated was a lot...couldn't even see my phone like that but still had to make that last payment.
There was no issue paying the rent, I was a fully functional adult who did everything myself back then and I was happy to do so but I got annoyed as most of my money was spent trying to desperately fix the problem before I had to change everything.
I also spent money getting necessities for the household and have a caring heart in general.
I had a gut feeling that my vision was getting worse, for context before the slight double vision I experienced worsened significantly and I would start to see it more often, usually through any lights at work and silhouettes on people.
I saw an older woman sitting out near the fountain and a slight outline was appearing above her, this was how bad my ghosting was.
I vividly remember going to one of my provider's appointments and seeing a ghostly outline of all the construction workers on the site, I knew in my chest that everything was not going to work out long-term and something deeper was going on.
Here's a picture that explains what the ghosting was like, now imagine working with that and doing full-on customer service in addition trying to do everything right.
Yeah, it was difficult to say the least...one co-worker hit the nail on the head and stated that I wouldn't be happy until it was all fixed or improved upon which I readily agreed and still feel this way today about a year later.
Due to my ocular rosacea which developed after surgery there would be episodes at work where my eyes would suddenly burn horribly and I would have to run to the bathroom, it was pretty bad and I had to do a whole routine of quickly wetting my paper towel and using it to cool my eyes down during a flare.
Looking back, I think I pushed myself too hard and the environment was very bright in addition to a lot of computer usage which made my dry eye and ocular rosacea worse, further compounding the problem.
I had to make the hard decision to move out early because I knew that I could not work anymore which was very unfortunate but necessary.
I moved in early May, everything was fine and I was grateful to be back in my hometown.
I needed to take a break while I figured out this medical situation which was the correct decision.
I hung out with my friend group, had a fabulous time around a week after I moved.
Little did I know that after that event my vision problem would drastically affect everything... it would be the last day I was truly happy and carefree.
Shortly after this, I started to experience horizontal double vision for the first time and everything began to blur intermittently every two to three seconds.
The easiest way I can describe it is like this Pikachu GIF, as my eye would turn this would occur.
Surprised Pikachu Startled Reaction Blur GIF | GIFDB.com
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This was very scary considering I had no idea what was truly going on and didn't know if it was something neurological or serious in nature.
After doing research on what could possibly be causing my condition I decided to see a behavioral optometrist in August.
That visit revealed a lot but I was in shock about how serious the situation was, five different diagnoses. (Spasm of accommodation, bilateral, accommodative component in esotropia, alternating esotropia, diplopia, and visual discomfort, bilateral)
During the appointment I had to look at the Snellen chart but my vision was highly unstable, blurring every two to three seconds but my provider stated to still try and ended up giving out a bogus prescription as he should have done a cycloplegic refraction the first time.
Even looking back at the report, it was stated that they do not cure the visual deficits which should have been a red flag but I was naive and desperate.
I tried using them in the office but they really didn't help and I tried to stick it out for two weeks but no dice.
Anyways, I wanted to try prism lenses to get rid of the intermittent double vision and asked politely if I could.
I had another "RX check-up" appointment in September and literally even at the highest diopter possible (55 for Fresnel) my eyes refused to cooperate, I wasn't really disappointed and always keep my guard up when it comes to actual treatment but it was still annoying considering they work for a lot of other people.
I tried to do some digging and found out about Atropine 1% sulfate drops which apparently help with the blur induced from the spasm.
I mentioned it to him but apparently my behavioral optometrist "would not use it on his own daughter", remember this for later.
I stated then that I cannot function with the intermittent diplopia and was a lot more honest since it was truly disabling and he placed tape on my glasses that helped immensely, this is called occlusion therapy by the way.
This was great and improved my function quite a bit as I finally had something besides closing an eye, seems like common sense but I was not sure if patching was safe or not long-term as apparently in some case for adults it can actually worsen their vision long-term.
Thanks to an online friend, I was able to get a translucent patch which helped a lot.
Also, I had to get full blown MRI/MRA checking various areas of my brain to rule out anything serious and the slip was intimidating.
I was very worried because my symptoms seemed to be neurological and I felt off in general, thankfully it was clear but irrationally I was a bit upset that it didn't really provide more info.
Later on, I read the report and apparently vision therapy would take 1-1.5 years of weekly sessions and $20,800 which is a lot of money and time.
Insurance does not cover it of course and I would have to do it through a payment plan, there is no guarantee that it will improve my vision as well.
The good news is that he wrote a strong disability letter that will definitely help for my case with SSDI and I'm genuinely thankful for that.
He also could tell that I needed to be on disability due to my visual impairment.
What was eerie too during that check-up was that he asked if I had suicidal thoughts or not because apparently one of the lights can induce it somehow or exacerbate them?
I still powered through the bad vision, which at the time was strong horizontal intermittent diplopia mixed with it blurring roughly every two to three seconds.
Now, imagine having this vision up until November 13th and barely scraping by, knowing that it's nothing fatal but very worried about what's truly going on and having to be very careful with doing literally every task like a geriatric old man.
Six months of being impaired with no way to obtain clear vision, throw in some horrible intermittent double vision too in addition.
Finally, on November 13th my pediatric ophthalmologist figured out how to get rid of that dreaded blur through a drop called Atropine 1% sulfate.
She used cyclopentolate during the check-up and I was able to see the Snellen chart easily after it relaxed my ciliary muscles and was prescribed bifocals.
At last I could see clearly without the blur but still was experiencing horrible double vision and unfortunately there are two side effects of Atropine itself.
1. Near focus is essentially obliterated and I must use bifocals to read up close.
2. They make my dry eye and ocular rosacea worse over time and burn when putting them in.
There is more and I will elaborate if needed.
I received a prescription for bifocals as well and got them, they are really hard to get used to though.
I have to look through above the line just to see correctly for distance and have to use the bottom portion for reading and whatnot, the only way to get rid of my intermittent double vision is to patch.
If I go past the line I experience a straight up blur effect.
It's a lot, even when I use Atropine.
I pretty much have one working eye that's segmented, it's super annoying and being half blind would be more appealing as my eyes cannot really work together.
I had a follow-up visit with my pediatric ophthalmologist and tried to educate myself greatly about the topic. I also was brutally honest, even stated that as a young man I shouldn't have to work so hard for something basic, that being single and clear vision in both eyes.
Also, she briefly mentioned that Atropine 1% sulfate drops could be making the crossing worse, which was a bit frustrating but there's always one minor issue.
Apparently to her, vision therapy would not help my case at all and she didn't recommend it further complicating the issue.
During this visit, my pediatric ophthalmologist provided a referral to a top adult strabismus surgeon as she did not know what to do further.
I appreciated the honesty and she has always been sweet, definitely planning on going back and paying the balance when I can.
She will also continue to sign forms as necessary too.
Next, I saw the top adult strabismus surgeon and that was one of the longest days in my life.
I had to go to a large hospital while impaired and of course they had a full blown TSA checkpoint style which is amazing for someone who is disabled.
I use a cane when I go out and I had to use the bathroom but of course the biggest wheelchair ever was blocking the entrance lol.
That exchange was frustrating, then a woman asked if I had trouble seeing which was nice...I didn't realize going through something like that is much harder when visually impaired.
Anyways, I do everything and am very honest about how the situation has impacted my life as I don't have much left to lose.
Again, I am facing long-term disability due to this issue.
The technician was easy to get along with but I always keep my guard up about getting actual help so I don't get disappointed because when it comes to the meat and potatoes, everything usually falls apart.
He had to get an assistant in to help and I already knew that something annoying was going to happen.
They tried prism lenses but of course, no surprise to anyone that they didn't work.
I detailed what has been going on and had a moment (cried) because I had the idea of it being permanent in my mind for a while and couldn't bear that to be the case as it would affect my life so much not being able to see properly.
I mean, having double vision literally every step I took is just rough, anyone could understand that.
Anyways, I get to the provider and the whole vibe shifted...dude's bedside manner was nice enough but severely lacking.
Even though I mentioned everything before it seemed like an interrogation and he claimed that in his long career there had only been a "handful" of cases and the woman who had a similar case needed to have her strabismus surgery reversed entirely which wasn't promising at all.
Apparently the root of the problem was psychological but keep in mind there was nothing psychological of that nature impacting myself at the time, only this impairment from hell where I experience double vision every step I took...that wears a person out over time especially if you're very desperate for a fix knowing how much is blocked off inherently.
He said unprofessional statements and asked if "my girlfriend left" which caused the spasm, literally shushed me when he was typing up the report since I was excited about finally finding out the reason why prism lenses worked.
You know that heartbeat feeling that can occur when you're about to pop off emotionally and say something a bit out of line?
I got it and most likely would have but thankfully was smart enough to bring a form for Social Security which I needed signed, the Lord stated to temper my tongue so I did.
He also stated that I shouldn't be reliant on Social Security benefits even though I struggle to function daily, which was hilarious but in my head I was low-key like whatever old man, if someone had my level of impairment they couldn't "macho" there way through everything.
I'm not a slouch either and worked hard before, being an involuntary NEET is a foreign concept and I can't enjoy it due to my vision being impaired.
I have no choice because all of my providers are stating that I can't work for at least a year.
I try to be as vocal as possible regarding my situation to improve it but there are literally no bones thrown to get better, it's like every path contradicts itself meanwhile I'm struggling way more than I should.
His professional advice was to patch and alternate both eyes, apparently it would take anywhere from two to twelve months which ties into the waiting game yet again.
Literally what my behavioral optometrist stated all the way back in August, he stated in the report that I don't need to see him again and that was it.
I walked in there ready for surgery or something huge but walked out with nothing but at least I got that form signed, it's like everything is pointing to getting disability but not being better enough to do what I used to and everyone thinks that's okay.
One time I tried wearing my old single vision glasses when relatives came over, I was a lot happier but got a nasty headache afterwards which was a reminder of what happens and why I didn't try that before.
After that, I had to make another appointment to see my neuro-ophthalmologist for a second time because apparently I compromised the whole exam by taking the Atropine 1% sulfate drops which was another waste of an appointment.
I literally clasped my hands like a meme and asked if he could support my disability case to try and get something out of it.
Of course, I have to take initiative and bring a MRI/MRA physical disk even though I know it's completely clear.
I try to take one positive aspect out of something like that and at least I got experience using Medicaid transportation, yippee but I still can't see well enough to do what I want as usual.
Keep in mind the office never reached out to state this prior and it's almost two hours to just get there, which made the whole trip a waste of time for the most part.
For my appointments, I am always as vocal as possible.
I state that I'm trying my hardest to get rid of my intermittent double vision to go back to work as soon as I can and enjoy hobbies.
I remember vividly, in fact, telling the technician that all I want to do is "see single and clearly in both eyes as a young man", that's it with no gimmicks or hard work.
I was already annoyed about the exam not being performed and just smiled when the technician stated that I couldn't do the full test as my luck dealing with situation can be quite awful...I get blessed in other areas but for this one I swear the devil cursed my situation.
Overall, I'm pretty composed and quite cordial when appointments don't go my way as I know a running trope is one minor issue always ruining something.
After a while, you get hardened after providers don't know what's going on and keep expectations low.
Anyways, my provider stated that it will be "temporary", he agreed with my top adult strabismus surgeon and stated to patch and reinforced that it is a temporary situation.
I doubt this personally as my pediatric ophthalmologist signed a form that was from a credit bureau asking for proof of disability and it stated January 2026.
This is what my behavioral optometrist suggested a while back in August when I stated I cannot function with the diplopia and keep in mind for most patients this only a short-term solution.
I've done a lot of research and occlusion therapy is a temporary solution at best and will not fix my situation or provide improvement over time alone.
Currently, I have to be off Atropine for 30 days, had to take initiative and reach out to the office and find out myself of course.
I tried this before after reaching out to my pediatric ophthalmologist and the first night was great! No side effects and I was going to do it once a week.
Suddenly, everything got worse after simply stopping the medication for a night.
I began to see two blurry images when my eyes relaxed and the blur became more intense across the board.
I instantly took it as soon as possible the next day after experiencing these brutal side effects and I learned that I'm not really functional without it, unfortunately.
Currently, I am without my drops and the next appointment is on the 12th.
It's been very rough and this is how my vision currently is and what I plan to tell my neuro-ophthalmologist about.
I wake up and literally everything has a faint blur to it and I have low vision pretty much from the get-go.
I also have the intermittent blurriness too, found a picture that accurately explains what happens when my eye shifts even though I don't have amblyopia.
Also, the intermittent double vision is strong and horizontal as always too.
Without my Atropine 1% sulfate drops, everything splits into two blurry images if I let my eyes relax for two seconds.
This wonderful woman uploaded a video of her experience with double vision and it's pretty much exactly what I experience, now imagine this but with two blurry images.
I also have another example as well too which is pretty accurate.
The Atropine makes them clear.
1.
2.
Anyways, my life currently has just been about living moment to moment with a brutal impairment and trying to get through the day.
I have trouble walking and what should be a basic task becomes much harder.
I try to do as much research as I can since I've stopped taking Atropine temporarily since April 9th.
Everyone states that I'm doing the best I can but the last great memory I had was hanging out with my friend group last May, everything was amazing and ate great food in addition to having no visual problems, only slight ghosting but that was all.
It's true though, I've accomplished a lot this past year and obtained Medicaid for myself, took initiative including getting the ball rolling for disability benefits and went to countless providers trying to fix my problem.
My question is this however, what is the point of getting a check and if I can't even see single and clearly in both eyes and have to be visually impaired for a long time.
There hasn't been a day since hanging out with my friends where I felt truly confident with the impairment and could do anything like I used to without feeling restricted or struggling.
I can't simply play a videogame, watch movies and television, read a book and whatnot anymore, there's no quality of life anymore and I'm just trying to get through the day and have to live moment to moment as my vision is really unstable.
That's a luxury at this point, obviously yes I can still type but I've been doing it over the course of a couple days and it's still difficult.
I just don't like my situation at hand, was forced to be an involuntary NEET over something I'm trying my best to fix but nothing ever happens.
I get a "manic" moment (not making fun of people who really experience that) where I want to do so much including reading books, television shows, movies and playing videogames but it is quickly shut down due to the brutal reality of being a visually impaired young man.
I want to work and help people out as much as I can but I feel like a geriatric old man in a 24 year old's body.
It's ridiculous and I hate my weird vision.
For my next appointment, I'm being straight up and telling them that without the drops I really can't see and need some type of treatment, the stakes are high and if I can't use Atropine long-term I will be stuck.
I have to be a bit out of character but I'm tired of everything being limited daily when I know something can be done, the specialists I'm seeing obviously think I'm much more functional which is annoying as hell.
I'll be honest and state that I've changed as well because I have to spend so much energy on just functioning, I really don't care about much else except fixing my vision and don't want to talk for hours and hours about the same topics everyday.
It's like waking up with barely functional vision in a survival horror game and just trying to get through the day, which seems hilarious at first but you can't really take life seriously and I simply do that to cope.
With true impairment, you can't do what other people can and feel excluded in a way which also sucks.
For example, my friends were proposing the idea of watching a movie and playing a new game that I'm also looking forward too but with the blurred vision and diplopia I simply can't do it.
They haven't really hung out as far as I know except one time but I keep my best friend informed as that's the least I can do.
I would rather be honest with him and my group then state that everything is fine and I'm doing well.
I know they don't want to hear the same thing everyday and I honestly don't blame them.
I wish I had a timeframe on when I'll get better and I could get back to doing what I want.
As a recap, here's the treatments I have researched.
Prism lenses - They simply do not work, here's why.
1.
2.
Vision therapy - I do not mind trying vision therapy out as a possibility but in my disability letter it was stated that it there would be no guarantee and the service would take 1-1.5 years of weekly sessions. It's also very expensive at $20,800 in total and obviously not achievable before getting disability payments of some sort. Also, my pediatric ophthalmologist advised against it as well. I might try it anyways once everything is financially viable as I don't think the other treatments will work.
Strabismus surgery - I met with a top adult strabismus surgeon as stated above and one woman who was similar to my case had it done and everything was reversed eventually. I could get a second opinion but was surprised on how it wasn't an option. Also, I forgot to mention that the pediatric ophthalmologist also has a surgeon too but apparently she wasn't comfortable handling my case.
Botox - I brought up the idea to my pediatric ophthalmologist and she stated that my deviation is too large.
I feel like I'm trying everything but I'm condemned to dealing with this impairment for a long time, really going to emphasize how dysfunctional I am at the next appointment and may have to be more honest as I feel like my sight is getting worse.
I'm literally living moment to moment due to how bad my physical impairment can get.
When I say I can't read, play videogames, watch television or do any of my hobbies I'm not exaggerating but these specialists must think so for some reason which is slowly building up trauma from them not listening and changing my emotions.
How should I approach this next appointment with the neuro-ophthalmologist?
I'm thinking on being 100% honest with the technicians and himself like this:
"How are you?"
"I'm not doing too well without the Atropine and struggle to function, your face is blurry and a lot of my life is living moment to moment."
"Can you see the Snellen chart?"
"No, I simply can't as it's all blurry and I experience severe, horizontal double vision to the point of being borderline non-functional."
Anyways, I wouldn't be posting to this community for nothing.
If my condition is actually more permanent and doesn't get resolved by the anniversary of my surgery (August 6th), I am considering the idea of committing suicide.
I'm religious but hopefully the Lord will understand why but honestly I probably won't do it as I have a lot of willpower and tenacity to keep going no matter what happens.
If I were to, though I would go for sodium nitrate primarily or falling backwards off a high place.
To be honest, I like the idea of falling a lot better especially after reading someone's comment about wearing a blindfold and earplugs.
That seemed super peaceful and tranquil.
I visualize myself just standing on top of whatever building, sticking my arms out and just falling without having to deal with my impairment anymore.
I'm not sure what time of day would be best, maybe in the night while it's pouring rain?
I know it sounds like romanticization of the act and I apologize in advance but it's comforting in my head...like one final "whatever" before I go into the abyss.
Sodium nitrite seems like a good alternative but I would struggle on having enough time to do it and would have to be inconspicuous.
It's unfortunate because I have a friend who got really messed up over LASIK surgery, his surgeon literally failed to treat his condition and he can't even look at his own face in the mirror...it's awful.
He's stuck like that too for the foreseeable future, can see a bit but nowhere near enough to back to his old life and I genuinely worry for him as he has attempted before.
Another close friend that I met on a Discord server jumped from a building and tragically left his mom and sister behind.
I was in shock and still am reeling from that because even though I didn't know him personally it was very unexpected.
Apparently someone on Facebook told him to kill himself too which was horrible and goes to show that some people do not have good intentions.
Anyways, to end off I'll describe both the positives and negatives of what's been going on.
POSITIVES:
1. I have learned not to really care about what other people think since I have to prioritize my function above anything else, obviously different that I'm temporarily off my Atropine 1% sulfate drops but it is worth mentioning.
2. I am much more grateful for what I have considering the limitations of my impairment.
3. I now understand what people with visual impairment go through and developed more empathy as a result.
4. I know that if I play the long game, I will get disability benefits and can easily get my own place regardless of what people say or do.
5. My medical issue is narrowed down mechanically and although I don't have a set path for actual treatment I have a greater understanding of what is actually going on.
6. I have found new hobbies such as joining sweepstakes, giveaways, listening to music plus dancing but this is simply to cope and the former is to prepare for the future where I can hopefully see better to enjoy what I used to.
7. Despite my horrible situation, I have still never done drugs, smoked or drank alcohol. However, I still deal with another vice that I am working on that is directly linked to the stress induced because of my issue and most young men probably go through it.
8. I still take care of myself and still feel good physically, tried to lay in bed for longer and I simply couldn't do it as I need to feel accomplished and help others in some way.
9. I'm perfectly content not being the "hero" or "main character" and don't mind being in the shadows while I figure this out.
NEGATIVES:
1. I feel like a kid in a candy shop which is an analogy for being restricted due to my physical impairment, I can never wake up and do exactly what I want to do and it's just a matter of doing small tasks and desperately looking forward to the next appointment.
2. A lot of my life currently is based on waiting for a chance to boost function, progress in my disability case but I'm not having fun doing so and everyday is difficult.
3. My last good memory where I didn't have the vision issues was hanging out with my friend group last May and having a wonderful time. After that, my symptoms increased dramatically and I had to put everything into building up my case, visiting providers and focusing on functioning. Also, to add on to this old memories of working and simply what I used to be able to do is very painful and fresh.
4. I hate not being able to do the hobbies I want which includes watching television, movies and playing videogames without struggling immensely and this obviously impacts my connection with other people since I can't relate and have hour long conversations about whatever's going on. I get very annoyed that I have to work so hard for something that should be basic and don't want to talk when I'm having trouble just being able to see properly.
5. I moved on from this a while back but sometimes I find myself being jealous about how unrestricted other people's lives are. A lot of people can do immoral activities but see perfectly and generally do all the hobbies that they like. I think the following, "Psh, must be nice being able to drive, watch movies, television or play videogames etc." It's a very toxic mindset that I find myself going back to but my pet peeve is when people complain but still have an able body and whatnot. My impairment makes life so much harder and I strongly dislike when people complain about their situation but I still see them having fun on social media i.e. going to bars, places and all these other outings.
6. It's very sad telling people that I don't know when I'll get better, further pushing them away. I'm taking all the initiative I can to fix my medical issue but hardly anything has changed and people quickly get tired of myself complaining but I need to in order to cope, it's a double edged sword.
7. I feel like I have a lack of direction, my providers are going towards the disability route but I'm not satisfied with my level of function either and want to work in addition to drive. I was still learning on how to do the latter but still.
8. I've become more cynical of the world after learning that my surgery was totally unnecessary and being misled in general, especially when it comes to the specialists I have interacted with.
9. If you are disabled either mentally or physically, expect less help from people in general as most relationships are purely transactional in nature and a lot people just care about their immediate family and no one else.
Anyways, that's pretty much my situation and how I've dealt with it, if anybody has dealt with a medical situation or visual impairment that has changed their life drastically I would appreciate some insight and what to say at my second neuro-ophthalmologist appointment before I end up admitting myself to a hospital because what I'm asking for should be given, not earned.
I'm really not suicidal but just have thoughts on sodium nitrite plus falling backwards as methods if my vision problem is not fixable and I'm stuck forever with it as I don't know how long I can deal with being deprived of a basic function.
Thank you all for reading this post, have a blessed day.
