Venting Lasik destroyed my eyes, in constant pain and bound to my apartment

[dumed1]

I've been suicidal before, but never registered an account here until now. About a year ago, I came out of a major depression and decided to get lasik. Maybe because I was a bit manic after having overcome depression, I didn't do as much research as I'd normally do about such a serious procedure, and I think I would have never gotten it if I had fully read and understood the risks. But I did get it, and it was great for awhile, but then my eyes suddenly became so dry that I have to constantly put in eye drops (many times per hour) and can't go outside almost at all, or my eyes will dry out. If do go outside or neglect the eyedrops, my eyes will be in pain for days and my vision will permanently deteriorate in weird ways. Worst of all, it doesn't seem like this condition is treatable, or that any doctor even knows what's wrong exactly - all they know is that lasik severed my corneal nerves, and thus my tear glands don't produce tears anymore, or at least tears that are good quality.

I can't do most of the things that make life worth living, except hang out with my girlfriend, who is a saint and hasn't left me (yet). But she wants to go out, and I can't do that. I see myself becoming a bitter, complaining person who is always in pain and can't do basic things. I see myself losing all my friends and my girlfriend. I can see myself losing my job and then my healthcare.

I fear becoming blind and not being able to commit suicide beforehand. I really don't want to be alive if I'm blind. I am 37, I don't know how to be a blind person, and I will not be able to learn how to navigate the world or find community. Who would take care of me? I have no real family. I also really like visual information, and my brain would be moving way too fast for auditory information to keep me engaged. I'd probably end up wishing for death constantly, even more than I already do due to my eye problems. And I've had suicidal thoughts even when my body was healthy!

So, I've decided to start planning to CTB in parallel to getting treatment that will hopefully help me (but is a long shot, as there is no real treatment for this, only management). That way, if my vision deteriorates, I will be able to end my life before I become a blind man with no one around to help him.

In the past, I wanted to use the nitrogen exit bag method, since it seemed to be the most peaceful. But I'm not sure that this is good for my current situation, as a nitrogen tank is too big to hide from others and might be hard to acquire and set up if I'm near-blind (the other stuff, like the exit bag and the regulator/tube is small enough to be kept hidden). Another method I looked at is SN, which can be kept hidden, but it's much less appealing to me, especially since I have to take an anti-emetic and might still puke. Seems not very peaceful, AND the ingredients seem hard to source. I just wish I could buy a firearm, but I live in one of the few jurisdictions in the US where purchasing any gun is illegal without special permission.

 

[Leiden]

Im sorry that this happened to you and all that has followed. I can understand how debilitating it is for you. It's so horrible all the things that can happen to the human body. It's truly terrifying. There should be a peaceful way for the suffering to be able to leave this miserable world. I wish things could have gone better for you.

 

[EvisceratedJester]

That sounds horrifying. I'm sorry you have to go through that.

 

[deadtomorrow]

I can't do most of the things that make life worth living, except hang out with my girlfriend

 

[JenX]

I'm so sorry this happened. Praying the treatment works for you.

 

[dumed1]

It really sucks because I was actually doing much better with regards to my depression. I had gotten a girlfriend for the first time in 5 years, things were going great with her, and I had a large group of friends that I was hanging out with and becoming closer to. I was even considering becoming a parent. For the first time in my life, life was really great. And then this health issue completely destroyed everything. I just wish I could go back in time and never get lasik. It's such a bad idea, even if this hadn't happened to me. It's a really destructive surgical procedure that's completely unnecessary. I was just so insecure about my glasses... and I really wanted to have perfect vision again. Such a waste of a wonderful life.

For those of you who primarily have mental issues, please know that these things can be fixed with medication, lifestyle changes, etc. I too once thought that I would be lonely forever and wouldn't be able to survive without company. And yet, after I got over my last depressive episode, I was able to build a very good life up until 1 month ago. But this is just too much. I can't just sit around in pain watching my vision deteriorate.

My only concern is for my girlfriend. She would be really sad if I killed myself. But, she's already really sad about what's happening to me, can't sleep, is constantly worried, etc. I feel like such a burden to her, and she would be long-term happier if I was gone, I think.

I too thought I would never get a girlfriend, because I am pale and bald and ugly. That's one of the reasons I was so set on getting lasik. But actually my girlfriend had met me before I got lasik and thought I was cute with glasses - I just didn't have the courage to approach her, because my self-esteem was too low.

Don't make the same mistake I made! Appreciate what you have (your health, even if it's not perfect, if you don't have to constantly worry about it that's better off than me), put yourself out there, make friends, make relationships. I know it's not that easy, and it wasn't easy for me. But it's possible. And I believe you can do it.

 

[sanctions]

Hey, fellow dry-eye sufferer here. I had PRK surgery 16 years ago and things were good for about a year. Then my vision started getting worse and I got chronic dry eye disorder. First my eye dr put me on refresh eye drops, which definitely help and I use it daily as needed. I also started eating tuna/salmon daily which helped. The first prescription he put me on was restasis, which did not help. Then he put me on Lotemax, which did help. It was some 4x a day regimen for a week, then 3x a day for a week, 2x for a week, 1x for a week. This helped tremendously. However, Lotemax is supposed to be used in short-term bursts like he prescribed, not on an ongoing basis. However, it is safe for ongoing use and my eye doctor made an exception for me. I've had to experiment with different schedules for taking the drug, and I've incorporated another prescription drug into the mix, xiidra, but my eyes are A LOT better and don't affect me much anymore. Maybe you'll have to experiment around, but my own routine is this:

day 1: lotemax (one drop in each eye) and refresh drops as needed
day 2: refresh drops as needed
day 3: xiidra (one drop in each eye) and refresh drops as needed
day 4: refresh drops as needed
day 5: xiidra (one drop in each eye) and refresh drops as needed
day 6: refresh drops as needed

then back to day 1.

btw I have to throw each lotemax bottle away after 7 uses because after that the effectiveness drastically deteriorates. My doctor has no idea why that happens, but it does.

What eyedrops and/or medications have you tried?

 

[dumed1]

I can't use refresh drops, they don't stay for long enough. I think my dry eye is very severe - my tears evaporate instantly, and I don't have much of them to begin with.

I use optase dry eye intense eye drops, which I have to use several times an hour, every hour. I've tried a bunch of other drops (refresh, systane complete, refresh relieva, retaine mgd, hylo gel, meibo). Meibo works decently well but it makes my vision really blurry, and I need another drop to go underneath meibo. Meibo replaces the oily layer of the tear film that I don't have anymore, and the other drop replaces the aqueous layer which I also don't really have anymore.

I'm on eysuvis, which is like a much more expensive lotemax. It helps with the symptoms, but my eyes are still really dry. And I can't use it for much longer. At that point, I'm pretty sure pain will return.

I'm using cequa eye drops, which make my eye burn, but it doesn't look like they actually DO anything to increase my tear production or the quality of my tears. I'm taking omega3 supplements, but that's not doing anything. I'm trying manuka honey, which stings so much it makes my eyes water, but it's low quality tears that evaporate fast. So, I don't know if it's worth it. But it seems to have anti-inflammatory properties, so maybe it will help?

It seems like whenever I find something that works, even if it's ridiculous like wearing goggles to go outside, my condition gets worse and that no longer works well enough. Now I need fully-sealed goggles in order to go outside, which means they fog up almost instantly and are really unpleasant to wear. Since the outdoors is my happy place, the place that I used to go to escape feelings of depression and suicide, I don't know how much longer I can tolerate my condition. Maybe if I was mentally healthy before this happened, I'd be able to live on with a severely reduced quality of life, and stay positive. But this is just too much, I think.

Still, even with all these symptoms, RIGHT NOW I don't want to die. Maybe it's my girlfriend's support. Maybe it's my friends' support. Maybe it's that I'm curious about what the future will bring (societally and for my friends and family, even if I'm just an observer). Maybe it's because I finally figured out a way to sleep through the night. But I suspect this will wear on me, especially since it's hard for me to go outside and get exercise. I guess if I died right now I wouldn't be too disappointed, but I'm not at a point where I definitely want to die.

I'll be making exit bags later today because it makes me feel better knowing there's a way out from dealing with this pain.

 

[sovcat]

I'm sorry for what you're going through man. This caught my attention because it's not the first time I've heard of this dry-eye after-effect post-lasik. I really hope this issue grows in attention because everyone goes into the operation without much concern and that's scary to think about.

I hope you find a way to manage before CTB and I hope the medical community figures out wtf is going on before more people are affected.

 

[b_adr]

The same for me. I was in a very good place for a long time. But 7-8 months ago I got a medical/aesthetic issue that is not possible to reverse. Moreover, the company whose product was at fault, will not bear any consequences. I am so angry at them that sometimes it even exceeds my depression.

 

[WhiteRabbit]

I had lasik 21 years ago when I was 18 and the same thing happened to me. It's been shitty and I wish I'd stuck with contacts. Dry eye sounds so innocuous until you have a severe case of it. Have you tried punctal plugs or autologous serum eyedrops? These things didn't help me much but they help some. There's a doctor in Boston named Dr. Hamrah who deals with people who have been damaged by lasik. He can look at your corneal nerves with a special microscope to see whats going on, and prescribe a protocol of eyedrops to encourage the nerves to grow back. I don't know if you're anywhere close to there.

If you just got lasik, the dry eye situation may get better over time. Sometimes it takes the nerves a long ass time to heal.

 

[dumed1]

I am somewhat close to Boston. But it will be a huge ordeal for me to go there, since it's hard for me to go outside. It seems he helps corneal neuralgia, which I don't think I have, because I have no pain if I keep my eyes moist (a hard problem).

 

[WhiteRabbit]

I am somewhat close to Boston. But it will be a huge ordeal for me to go there, since it's hard for me to go outside. It seems he helps corneal neuralgia, which I don't think I have, because I have no pain if I keep my eyes moist (a hard problem).

Dry eyes can be a symptom of cornea neuralgia. If your nerves were severed and aren't communicating with you tear glands then they didn't regenerate properly. Treatment for cornea neuralgia may help fix those nerves.

Just something to think about.

 

[dumed1]

The earliest appointment he has available is next year. Not sure if I can last that long...

 

[sanctions]

how many times per day do you take eysuvis? And yes, you're very likely right that the pain will return/worsen if you stop taking it. why can't you keep taking it? your condition is so severe you need a corticosteroid like eysuvis (or stronger) to manage this. my understanding is eysuvis can be taken daily indefinitely as long as your eye dr checks you regulary to make sure the drug isn't increasing your eye pressure levels.

 

[Raindancer]

I am really sorry that happened to you. I can relate a bit as I had a clogged ear and thinking it ear wax, I used an ear drop and immediately got tinnitus, bad. The doctor said impossible, but it happened immediately after I put the drops in. I would give anything to hear silence again. It is amazing how much we take for granted, and it's hard to let go of the regret if I just hadn't done it. Maybe you can get on the cancellation list for the doctor that was recommended.

 

[needthebus]

I've been suicidal before, but never registered an account here until now. About a year ago, I came out of a major depression and decided to get lasik. Maybe because I was a bit manic after having overcome depression, I didn't do as much research as I'd normally do about such a serious procedure, and I think I would have never gotten it if I had fully read and understood the risks. But I did get it, and it was great for awhile, but then my eyes suddenly became so dry that I have to constantly put in eye drops (many times per hour) and can't go outside almost at all, or my eyes will dry out. If do go outside or neglect the eyedrops, my eyes will be in pain for days and my vision will permanently deteriorate in weird ways. Worst of all, it doesn't seem like this condition is treatable, or that any doctor even knows what's wrong exactly - all they know is that lasik severed my corneal nerves, and thus my tear glands don't produce tears anymore, or at least tears that are good quality.

I can't do most of the things that make life worth living, except hang out with my girlfriend, who is a saint and hasn't left me (yet). But she wants to go out, and I can't do that. I see myself becoming a bitter, complaining person who is always in pain and can't do basic things. I see myself losing all my friends and my girlfriend. I can see myself losing my job and then my healthcare.

I fear becoming blind and not being able to commit suicide beforehand. I really don't want to be alive if I'm blind. I am 37, I don't know how to be a blind person, and I will not be able to learn how to navigate the world or find community. Who would take care of me? I have no real family. I also really like visual information, and my brain would be moving way too fast for auditory information to keep me engaged. I'd probably end up wishing for death constantly, even more than I already do due to my eye problems. And I've had suicidal thoughts even when my body was healthy!

So, I've decided to start planning to CTB in parallel to getting treatment that will hopefully help me (but is a long shot, as there is no real treatment for this, only management). That way, if my vision deteriorates, I will be able to end my life before I become a blind man with no one around to help him.

In the past, I wanted to use the nitrogen exit bag method, since it seemed to be the most peaceful. But I'm not sure that this is good for my current situation, as a nitrogen tank is too big to hide from others and might be hard to acquire and set up if I'm near-blind (the other stuff, like the exit bag and the regulator/tube is small enough to be kept hidden). Another method I looked at is SN, which can be kept hidden, but it's much less appealing to me, especially since I have to take an anti-emetic and might still puke. Seems not very peaceful, AND the ingredients seem hard to source. I just wish I could buy a firearm, but I live in one of the few jurisdictions in the US where purchasing any gun is illegal without special permission.

I am so so so sorry this happened to you

Lasik goimg wrong is such an horrible thing. Ive never experienced it, but there was a female weather forcaster who got lasik and it didnt go well and it sounded like absolute hell

If it goes well, it's great. If there are complucations it's an unending nightmare.

I wish i could give you a hug. I have nothing helpful to say about what you should or shouldn't do, just that im so sorry the world is so hard sometimes.

I wish people who were getting lasik were warned more clearly that the rare side effects are so terrible when they occur.


I know what you have written is all true and your pain is real and anyone in your situation would feel this way.

 

[dumed1]

how many times per day do you take eysuvis? And yes, you're very likely right that the pain will return/worsen if you stop taking it. why can't you keep taking it? your condition is so severe you need a corticosteroid like eysuvis (or stronger) to manage this. my understanding is eysuvis can be taken daily indefinitely as long as your eye dr checks you regulary to make sure the drug isn't increasing your eye pressure levels.

I currently take it twice a day. Even with the eysuvis, I have to put in drops every 30 minutes or so to avoid pain. My eyes don't seem to produce much of their own tears, but I am going to a doctor soon who will confirm or deny this. I got some moisture chamber glasses that I can use to go outside, but they fog up (that's the point of them), and I still have to put in drops all the time, maybe even more frequently than every 30 minutes. My vision keeps getting worse, I'll need glasses again, but I'd need a new prescription every week. This doesn't feel like a life worth living, to me.

Looking at a computer is tough, looking at my phone is tough. Without anything to distract me, I am alone with my thoughts, and my thoughts have always been terrible. I've been suicidal before even when my life was objectively great, and now it's objectively horrible.

I want to commit suicide. But then when I envision putting the exit bag or gas mask over my head, turning on the nitrogen tank, and falling asleep forever... I feel disgusted, and I want to live. But my life is also excruciating and boring and hard and painful and full of guilt, so I want to die. And on and on it goes...

I talked with my girlfriend about thoughts of suicide and now SHE can't sleep and is very worried. She told me she would kill herself if I killed myself, or that she would be traumatized for years. This is horrible, she might be right. I feel like a huge burden to her and that she would be much better off if I died, but maybe my suicide would make her life even worse than it is now. I feel stuck between a rock and a hard place.

Even with all of this, there are some brief moments in life that are still enjoyable, like cuddling with the girlfriend, cooking a meal together, watching a movie (although this is becoming harder as my vision is getting worse). But I can feel the depression moving in, taking away joy from everything. And when it's fully taken over my mind, I don't know if I can continue living. I just don't think I'm resilient enough to handle something like this. I always thought that I would die from suicide once I developed a serious medical condition that made life much harder, I just didn't think it would happen in my late 30s.

 

[YourEarthRoommate]

I can't even imagine how devastating this has been for you. Honestly, my heart hurts reading everything that you've written here. I have struggled both with suicidal ideation and debilitating dry eyes, though not related to one another. I've also witnessed what suicide does to those you leave behind, and been incapacitated from an injury that eliminated my ability to walk. I would love to give you some sincere, yet candid perspective / advice with that in mind. I know this is long, but I have a lot to say.

First, and I know this is the last thing you want to hear right now, but it's 100% true and critical to recognize; you are lucky and fortunate more than you realize. I can tell from that last post alone. The human brain can be cruel by pointing your attention to everything that's gone wrong and how unfair it is. This issue significantly affects every aspect of your life, so how could you not think about it 24/7? I understand what it feels like to have everything impacted by a disability you didn't deserve, and it's grueling. I have serious compassion for you. That said, I would give my left fucking arm for a partner who was so compassionate, supportive, loving, and committed to stick by my side like that. Holy shit dude. She cares so so so much for you. There are people who live their whole lives without having anyone feel that way for them, and I'm jealous of you for finding her. Even though it's sour to hear someone tell you to be grateful... dude. Be grateful for her and tell her you love her. Even though it's difficult, intentionally focusing on the parts of life that are good takes power away from things that are bad. The inverse of that is also true.

Another traumatic thing we do to ourselves when facing disability is to compare our loftiest expectations and dreams of what life could have looked like, with the most pessimistic and hopeless guess at what life will look like "now." For example, when I lost the ability to walk, I could NOT STOP THINKING about how I wasn't going to be able to workout anymore, play racquetball, go on walks, be an attractive partner, walk my daughter down the aisle, etc etc etc. I had so many plans that were "taken" from me, and it was crushing. As months went by though, I started to realize that my life wasn't necessarily ruined, it was just altered. While those consequences were real, I had different opportunities present themselves that were beneficial. For example, I joined a wheelchair basketball league and made the best friends of my life there. I would have never have met those people had this not happened, and although I'm not grateful to be in a wheelchair, I'm grateful to have them. In your situation, this may look something like artistic expression. I know you're not blind, but when you lose your vision, your brain adapts and senses other than sight are enhanced. You could leverage that and dive into writing music, mastering an instrument, writing a book or poetry, making pottery by feel, designing custom and designer perfumes, etc. You're truly only as limited as you perceive yourself to be. I really want you to believe that.

Also realize that making an effort like that would encourage and impress your girlfriend more than you know. She sees how difficult this is for you, and would be inspired and proud beyond words to see you make that effort. Rather than being a burden on her, you're in a position to show her what a man does in the face of undeserved adversity: persist, endure, achieve, and eventually, thrive. Should you leave us, her life would be irreparably scarred. She would be plagued with doubts of "Was I not supportive enough?" "Why didn't I get him help?" "Did I say something that pushed him over the edge?" "Was I not enough for him to live for?" and on and on and on. I've seen it, and it's many years of self-blame and guilt at a minimum. If it were up to me, you would make the effort to "grow through the concrete," be an inspiration for her, and find pride in the person looking back from the mirror.

Finally, I want to address your eyes. I had a few years where my eyes were so dry that my eyelids would stick to my eyeballs when looking around. Thankfully it resolved with time, which should be a hopeful anecdote. I learned a lot about treatment options in that time.

1. Those glasses are life savers, but you need to use an anti-fog coating on them. Get some FogAway. I'm not sure which glasses you have now, but Ziena makes the best ones. They cost a bit, but they're worth their weight in gold. Super comfortable, inconspicuous, and they seal really well.

2. You should also be using cyclosporine eye drops morning and night. You're using cequa which is cyclosporine, but its more expensive and causes the burning you mentioned due to the carrier fluid. It claims to be faster acting than generic cyclosporine, though that's debatable and inconsequential for long term treatment. You can order generic cyclosporine drops (aka Restasis) online from sources overseas for pennies on the dollar (alldaychemist). Note that it can take up to 3 months for cyclosporine to be fully effective, but it's absolutely worth the commitment.

3. It's my uneducated opinion that you should keep using the eyesuvis or even up it to lotemax (higher concentration), at least until other treatments start working maximally. It reduces inflammation, but through a different mechanism of action than cyclosporine, so their effects are additive. I would recommend letting your doctor know where you're at mentally and getting another prescription. You could also check the source I mentioned. The consequences of continued use should be monitored by a doctor, but generally aren't acute. You're mainly looking at increased intraocular pressures and potential cataract formation, but those take time to occur (if they do), and can be prevented if your doc is monitoring you.

4. Get punctal plugs, top and bottom. The puncti drain your tears down though your nasal passages. You can have a doctor put a tiny plastic plug in them so your tears last longer on your eyeball; this made a huge difference for me. You can feel them on the surface of your eye for a couple days, but your brain soon ignores the sensation.

5. You should also try scleral lenses. They are contacts that sit on the sclera (white part) of your eye rather than the cornea. They have a small liquid reservoir between the lens and cornea which keeps the eye hydrated. They don't work for everyone and I haven't tried them myself, but many swear by them.

6. Use a humidifier or two at home and monitor the indoor humidity. This will let you to function more normally which is huge for morale. Even if you still have to use drops, it will be less often. I've even used one in my car before and it helps tremendously. Whole-home steam humidifiers are best, but you can go with an ultrasonic one with distilled water (important) to start. Also consider a high quality HEPA air purifier. They suck an astonishing amount of crud out of even the cleanest homes.

7. Take a high quality omega-3 supplement and eat salmon often. Tere's research that proves it's efficacy at thickening the lipid layer of your tears.

8. Drink plenty of water. I've noticed that my eyes get much more dry when I'm not hydrating intentionally.

9. Get a microwavable heating pad like this https://a.co/d/0faAL0sZ. It's not a cure, but the heat encourages tear production and reduces soreness. It's a luxurious experience and something to look forward to as a break from the discomfort.

10. Be certain you are using preservative free eye drops rather than a bottle (the ones in little vials of 5 stick together). Optase dry eyes intense might be ok, but I would recommend you try Refresh Optive Advanced (https://a.co/d/03u4K9r9). They have 5 times the glycerine, 0.5% CMC, and polysorbate. Those last 2 ingredients aren't in yours and they are beneficial. CMC makes the drops last much longer due to it's viscosity. Polysorbate is a surfactant and emulsifier that helps the liquid spread evenly and stabilizes the lipid layer to reduce evaporation. The viscosity might not be as immediately refreshing as what you're using now, but they are significantly longer lasting. You could even use both.

11. Ask your doctor about autologous eye drops. They are eye drops made from your own blood, which sounds weird, but they work. The growth factors, proteins, vitamins, and lipids in them improve your eyes ability to heal, reduce inflammation and irritation, and provide superior lubrication to anything else you could buy.

I believe in the right to chose. If CTB is a conclusion someone comes to after careful consideration, they should feel empowered to make that choice. From my perspective though, that'd be a flat out mistake for you. You have hope for a beautiful future life with your girl, you've got dozens of avenues of personal expression and entertainment to explore, and there's many efficous treatment options you haven't tried that have worked for me personally, not to mention the possibility your body heals on its own. The difficulty you're going through now will sharpen your character, force you to grow, and give you something to be proud of yourself for! Don't stick around for your girlfriend, do it for yourself and the opportunities you still have.

I really wish you the best man. I took the time to write all this out because I deeply empathize with you. I know what disability feels like, and I know it's absolute hell, but I ALSO know there's countless beautiful, joyful, and rewarding days in your future that you would be foolish to miss out on. It's just difficult to see them right now.

Let me know if there's anything I can do to help. I'm here for you.

 

[Jarni]

red light therapy could be very interesting for you:

https://www.liebertpub.com/doi/abs/10.1089/photob.2022.0102

New technologies in the clinic: Combining light-based therapies for the treatment of dry eye

When combined, intense pulsed light and low-level light therapy—both of which have roots in dermatology—create a synergistic effect that treat dry eye more effectively than one therapy alone.

www.optometrytimes.com

You can read about it here: https://www.lighttherapyinsiders.com/

 

[JinZhin]

I am sorry this happened to you. As someone who also has bad vision and favors visual information above all else, this sounds like absolute hell and it's understandable that it makes you want to end it, but I hope that you will be able to find a way to alleviate the issue or get help for it. Don't really have anything useful or constructive to say, but I'm sending hugs and I hope you will not be in so much pain soon.

 

[dumed1]

I went to the doctor recently and got a bunch of tests:
- I am producing very few tears
- My tears evaporate instantly (TBUT = 0)
- I have inflammation in my tears still, despite the steroids
- I seem to have some inflammation underneath the lasik flap? Or some corneal issues there.
- Tyrvaya did nothing, it did not cause me to produce any tears

First, and I know this is the last thing you want to hear right now, but it's 100% true and critical to recognize; you are lucky and fortunate more than you realize. I can tell from that last post alone. The human brain can be cruel by pointing your attention to everything that's gone wrong and how unfair it is. This issue significantly affects every aspect of your life, so how could you not think about it 24/7? I understand what it feels like to have everything impacted by a disability you didn't deserve, and it's grueling. I have serious compassion for you. That said, I would give my left fucking arm for a partner who was so compassionate, supportive, loving, and committed to stick by my side like that. Holy shit dude. She cares so so so much for you. There are people who live their whole lives without having anyone feel that way for them, and I'm jealous of you for finding her. Even though it's sour to hear someone tell you to be grateful... dude. Be grateful for her and tell her you love her. Even though it's difficult, intentionally focusing on the parts of life that are good takes power away from things that are bad. The inverse of that is also true.

First of all, thank you so much for writing all of this out for me. I know how lucky I am, and I am doubly lucky that you took the time to register an account just to post all this life-affirming stuff. I tell her I love her all the time. But it's very hard for her to take care of me, and I don't want her life to end just because she's dating me. It's not a very long relationship, it just moved very fast.

Another traumatic thing we do to ourselves when facing disability is to compare our loftiest expectations and dreams of what life could have looked like, with the most pessimistic and hopeless guess at what life will look like "now." For example, when I lost the ability to walk, I could NOT STOP THINKING about how I wasn't going to be able to workout anymore, play racquetball, go on walks, be an attractive partner, walk my daughter down the aisle, etc etc etc. I had so many plans that were "taken" from me, and it was crushing. As months went by though, I started to realize that my life wasn't necessarily ruined, it was just altered. While those consequences were real, I had different opportunities present themselves that were beneficial. For example, I joined a wheelchair basketball league and made the best friends of my life there. I would have never have met those people had this not happened, and although I'm not grateful to be in a wheelchair, I'm grateful to have them. In your situation, this may look something like artistic expression. I know you're not blind, but when you lose your vision, your brain adapts and senses other than sight are enhanced. You could leverage that and dive into writing music, mastering an instrument, writing a book or poetry, making pottery by feel, designing custom and designer perfumes, etc. You're truly only as limited as you perceive yourself to be. I really want you to believe that.

Yes, it's true. I am grieving what my life could have been without getting lasik, compared to what it is now, and also the worst case scenario of losing my vision completely (it's declining rapidly). The problem with all the things you mentioned is that I don't enjoy any of them. Playing music is especially traumatic for me due to childhood abuse around music. I think the core problem is that I was already close to suicide even when everything was fine, and this disability is pushing me over the edge.

Making art is good and all, but I am not a very creative person. I did consider learning to draw, and that is still something that I could do.

Also realize that making an effort like that would encourage and impress your girlfriend more than you know. She sees how difficult this is for you, and would be inspired and proud beyond words to see you make that effort. Rather than being a burden on her, you're in a position to show her what a man does in the face of undeserved adversity: persist, endure, achieve, and eventually, thrive. Should you leave us, her life would be irreparably scarred. She would be plagued with doubts of "Was I not supportive enough?" "Why didn't I get him help?" "Did I say something that pushed him over the edge?" "Was I not enough for him to live for?" and on and on and on. I've seen it, and it's many years of self-blame and guilt at a minimum. If it were up to me, you would make the effort to "grow through the concrete," be an inspiration for her, and find pride in the person looking back from the mirror.

Yea this would be the ideal. Unfortunately, as someone who had a lot of difficulty doing normal things in life before this, I am not sure that I would be able to step up. Even simply surviving is using up all my energy. Also, it's not clear that this adversity is undeserved - I shouldn't have gotten lasik, even if this dry eye situation hadn't happened, I would have still regretted my decision as my vision was not actually as stable as I hoped, I kinda tricked myself into believing that it was.

1. Those glasses are life savers, but you need to use an anti-fog coating on them. Get some FogAway. I'm not sure which glasses you have now, but Ziena makes the best ones. They cost a bit, but they're worth their weight in gold. Super comfortable, inconspicuous, and they seal really well.

Yes I have the Ziena Kai. They are fine and they allow me to go outside and do things, as long as I put in eyedrops every 30 minutes or so. I have anti-fog wipes, which don't really seem to be doing much. I'll try fogaway.

2. You should also be using cyclosporine eye drops morning and night. You're using cequa which is cyclosporine, but its more expensive and causes the burning you mentioned due to the carrier fluid. It claims to be faster acting than generic cyclosporine, though that's debatable and inconsequential for long term treatment. You can order generic cyclosporine drops (aka Restasis) online from sources overseas for pennies on the dollar (alldaychemist). Note that it can take up to 3 months for cyclosporine to be fully effective, but it's absolutely worth the commitment.

I am using cequa because it's faster-acting. It's fine that it's expensive, I can easily afford it (another reason why my life was so awesome before all this started).

3. It's my uneducated opinion that you should keep using the eyesuvis or even up it to lotemax (higher concentration), at least until other treatments start working maximally. It reduces inflammation, but through a different mechanism of action than cyclosporine, so their effects are additive. I would recommend letting your doctor know where you're at mentally and getting another prescription. You could also check the source I mentioned. The consequences of continued use should be monitored by a doctor, but generally aren't acute. You're mainly looking at increased intraocular pressures and potential cataract formation, but those take time to occur (if they do), and can be prevented if your doc is monitoring you.

Yes I am continuing to use eyesuvis. I guess it's better to use that than to continue having everything be inflamed.

4. Get punctal plugs, top and bottom. The puncti drain your tears down though your nasal passages. You can have a doctor put a tiny plastic plug in them so your tears last longer on your eyeball; this made a huge difference for me. You can feel them on the surface of your eye for a couple days, but your brain soon ignores the sensation.

Bad idea when there's inflammation in my tears (which there is right now). It will trap the inflammatory cytokines on my eye and worsen everything.

5. You should also try scleral lenses. They are contacts that sit on the sclera (white part) of your eye rather than the cornea. They have a small liquid reservoir between the lens and cornea which keeps the eye hydrated. They don't work for everyone and I haven't tried them myself, but many swear by them.

Yes, it's on the list of things to try. But maybe a last resort. My eyesight is fluctuating / declining so quickly right now that I'm not sure what kind of scleral lense I should even get. It's also tricky to get scleral lenses if TBUT=0 and there's few natural tears in the eye. The scleral lens doesn't cover the entire eye, so the corners of my eye would still get very dry.

6. Use a humidifier or two at home and monitor the indoor humidity. This will let you to function more normally which is huge for morale. Even if you still have to use drops, it will be less often. I've even used one in my car before and it helps tremendously. Whole-home steam humidifiers are best, but you can go with an ultrasonic one with distilled water (important) to start. Also consider a high quality HEPA air purifier. They suck an astonishing amount of crud out of even the cleanest homes.

Yes this is all good advice, thank you. I do have a humidifier for the winter, but I am running the air conditioner right now so it doesn't really make sense.... Humidity is at 50% though, not too low.

7. Take a high quality omega-3 supplement and eat salmon often. Tere's research that proves it's efficacy at thickening the lipid layer of your tears.

8. Drink plenty of water. I've noticed that my eyes get much more dry when I'm not hydrating intentionally.

9. Get a microwavable heating pad like this https://a.co/d/0faAL0sZ. It's not a cure, but the heat encourages tear production and reduces soreness. It's a luxurious experience and something to look forward to as a break from the discomfort.

10. Be certain you are using preservative free eye drops rather than a bottle (the ones in little vials of 5 stick together). Optase dry eyes intense might be ok, but I would recommend you try Refresh Optive Advanced (https://a.co/d/03u4K9r9). They have 5 times the glycerine, 0.5% CMC, and polysorbate. Those last 2 ingredients aren't in yours and they are beneficial. CMC makes the drops last much longer due to it's viscosity. Polysorbate is a surfactant and emulsifier that helps the liquid spread evenly and stabilizes the lipid layer to reduce evaporation. The viscosity might not be as immediately refreshing as what you're using now, but they are significantly longer lasting. You could even use both.

Doing all of these, thank you. Will try the refresh optive advanced drops.

11. Ask your doctor about autologous eye drops. They are eye drops made from your own blood, which sounds weird, but they work. The growth factors, proteins, vitamins, and lipids in them improve your eyes ability to heal, reduce inflammation and irritation, and provide superior lubrication to anything else you could buy.

I'm getting these next week sometime.

I believe in the right to chose. If CTB is a conclusion someone comes to after careful consideration, they should feel empowered to make that choice. From my perspective though, that'd be a flat out mistake for you. You have hope for a beautiful future life with your girl, you've got dozens of avenues of personal expression and entertainment to explore, and there's many efficous treatment options you haven't tried that have worked for me personally, not to mention the possibility your body heals on its own. The difficulty you're going through now will sharpen your character, force you to grow, and give you something to be proud of yourself for! Don't stick around for your girlfriend, do it for yourself and the opportunities you still have.

I really wish you the best man. I took the time to write all this out because I deeply empathize with you. I know what disability feels like, and I know it's absolute hell, but I ALSO know there's countless beautiful, joyful, and rewarding days in your future that you would be foolish to miss out on. It's just difficult to see them right now.

Let me know if there's anything I can do to help. I'm here for you.

Right now, I think the main problem is my attitude / major depression/anxiety being triggered as a result of my eyes. When I get depression, I end up contemplating suicide a lot, even when things are totally fine in my life. And I tell myself it's going to be ok, you're fine, everything is fine. But I can't really tell myself that right now. And I can't use a lot of the coping strategies I used to use, because they either involved looking at screens, going outside, or socializing, all of which are difficult for me right now.

And a lot of it is me blaming myself for getting lasik. I clearly had dry eyes beforehand, because I couldn't wear contacts for the entire day. I didn't think I had dry eyes because I never had to put in eye drops. But I should have done more research, and realized that my eyes were dry, and that getting lasik was especially risky for me. I always do a lot of research before doing anything. Except for this. What was I even thinking?

And also my eyes are getting a lot worse rapidly. I used to be able to put in eyedrops every 30 minutes, which was terrible, but... now they dry out almost immediately. If I put in meibo too, it can last 15 minutes maybe. But that's putting in 2 drops in every eye, every 15 minutes, the entire time I'm awake. If I use moisture seal glasses, that can be extended a bit, but they fog up.

 

[needthebus]

I went to the doctor recently and got a bunch of tests:
- I am producing very few tears
- My tears evaporate instantly (TBUT = 0)
- I have inflammation in my tears still, despite the steroids
- I seem to have some inflammation underneath the lasik flap? Or some corneal issues there.
- Tyrvaya did nothing, it did not cause me to produce any tears


First of all, thank you so much for writing all of this out for me. I know how lucky I am, and I am doubly lucky that you took the time to register an account just to post all this life-affirming stuff. I tell her I love her all the time. But it's very hard for her to take care of me, and I don't want her life to end just because she's dating me. It's not a very long relationship, it just moved very fast.

Yes, it's true. I am grieving what my life could have been without getting lasik, compared to what it is now, and also the worst case scenario of losing my vision completely (it's declining rapidly). The problem with all the things you mentioned is that I don't enjoy any of them. Playing music is especially traumatic for me due to childhood abuse around music. I think the core problem is that I was already close to suicide even when everything was fine, and this disability is pushing me over the edge.

Making art is good and all, but I am not a very creative person. I did consider learning to draw, and that is still something that I could do.

Yea this would be the ideal. Unfortunately, as someone who had a lot of difficulty doing normal things in life before this, I am not sure that I would be able to step up. Even simply surviving is using up all my energy. Also, it's not clear that this adversity is undeserved - I shouldn't have gotten lasik, even if this dry eye situation hadn't happened, I would have still regretted my decision as my vision was not actually as stable as I hoped, I kinda tricked myself into believing that it was.

Yes I have the Ziena Kai. They are fine and they allow me to go outside and do things, as long as I put in eyedrops every 30 minutes or so. I have anti-fog wipes, which don't really seem to be doing much. I'll try fogaway.

I am using cequa because it's faster-acting. It's fine that it's expensive, I can easily afford it (another reason why my life was so awesome before all this started).

Yes I am continuing to use eyesuvis. I guess it's better to use that than to continue having everything be inflamed.

Bad idea when there's inflammation in my tears (which there is right now). It will trap the inflammatory cytokines on my eye and worsen everything.

Yes, it's on the list of things to try. But maybe a last resort. My eyesight is fluctuating / declining so quickly right now that I'm not sure what kind of scleral lense I should even get. It's also tricky to get scleral lenses if TBUT=0 and there's few natural tears in the eye. The scleral lens doesn't cover the entire eye, so the corners of my eye would still get very dry.

Yes this is all good advice, thank you. I do have a humidifier for the winter, but I am running the air conditioner right now so it doesn't really make sense.... Humidity is at 50% though, not too low.

Doing all of these, thank you. Will try the refresh optive advanced drops.

I'm getting these next week sometime.

Right now, I think the main problem is my attitude / major depression/anxiety being triggered as a result of my eyes. When I get depression, I end up contemplating suicide a lot, even when things are totally fine in my life. And I tell myself it's going to be ok, you're fine, everything is fine. But I can't really tell myself that right now. And I can't use a lot of the coping strategies I used to use, because they either involved looking at screens, going outside, or socializing, all of which are difficult for me right now.

And a lot of it is me blaming myself for getting lasik. I clearly had dry eyes beforehand, because I couldn't wear contacts for the entire day. I didn't think I had dry eyes because I never had to put in eye drops. But I should have done more research, and realized that my eyes were dry, and that getting lasik was especially risky for me. I always do a lot of research before doing anything. Except for this. What was I even thinking?

And also my eyes are getting a lot worse rapidly. I used to be able to put in eyedrops every 30 minutes, which was terrible, but... now they dry out almost immediately. If I put in meibo too, it can last 15 minutes maybe. But that's putting in 2 drops in every eye, every 15 minutes, the entire time I'm awake. If I use moisture seal glasses, that can be extended a bit, but they fog up.

I am not sure if anything can be done.

I hope you have gone to see specialists. In the US,

Bascom Palmer Eye Institute-University of Miami Hospital and Clinics

Wills Eye Hospital

Wilmer Eye Institute

are the best ones. Bascom Palmer may be rated best. If you have already gone to one, I would be careful about saying so and possibly identifying yourself slightly.

https://health.usnews.com/best-hospitals/rankings/ophthalmology

ad

You probably already know all this, although perhaps it's hard to look stuff up.

You probably live in Washington DC since you can't easily buy a gun which means you probably already went to Wilmer which means probably the other places won't provide that much different care, although it could be worth it to check out Bascom Palmer. I would also be a bit more careful on here with posting information that makes it clear where you are because they could figure out who you are, the pro-lifers who want everyone alive even if they are in agonizing pain for religious reasons, and they do have some legal options to mess with people. If I could figure it out, they could too.

Your situation is terrible. I'm so sorry, and I'm so sorry they don't make it easier for people who want to end things.

I think you need to decide whether you are willing to live with the pain or without eyesight in order to be with your girlfriend. This sounds awful, but if they take your eyes out would the pain subside? Could you exist as a blind person and be happy or would that be too much to bare?

I would try to keep going to all the top Eye doctors and try a few things, although it may end up being pointless. If you live in Washington DC, wouldn't you be able to just move to a different location if you can lawfully do so and then keep whatever you get somewhere else (away from your girlfriend who could be impacted) and that way if things get worse you would have it? Or just pay the suicide clinic in advance? I understand your fears on losing eyesight completely and then being unable to find a good way to end things and being in pain and possibly being dependent on others and unable to die. Being trapped like that is a horrible situation. It sounds like you don't want to ctb right now, you want to live if there's any way to get better, but you want the option available.

You indicated your financial situation is alright. Can you go down the list of top eye hospitals and see at least a few?

Have you drawn up a will so that your girlfriend will have something if things get worse? Would that help her out? Have you talked to the clinics in Switzerland?

I'm so sorry. They need to warn people more about Lasik and the things that can happen with when it goes wrong.

You seem like a nice person and I hope there's some doctor out there who is willing to try something new that could work. If the problem is inflammation, I don't know why they can't inject or apply strong anti-inflammatories to the area.

https://www.fda.gov/media/160239/download

1434 Words
The US FDA considered adding warnings to Lasik. https://www.fda.gov/media/160239/download

You probably already know all this, although perhaps it's hard to look stuff up.

You probably live in Washington DC since you can't easily buy a gun which means you probably already went to Wilmer which means probably the other places won't provide that much different care, although it could be worth it to check out Bascom Palmer. I would also be a bit more careful on here with posting information that makes it clear where you are because they could figure out who you are, the pro-lifers who want everyone alive even if they are in agonizing pain for religious reasons, and they do have some legal options to mess with people. If I could figure it out, they could too.

Your situation is terrible. I'm so sorry, and I'm so sorry they don't make it easier for people who want to end things.

I think you need to decide whether you are willing to live with the pain or without eyesight in order to be with your girlfriend. This sounds awful, but if they take your eyes out would the pain subside? Could you exist as a blind person and be happy or would that be too much to bare?

I would try to keep going to all the top Eye doctors and try a few things, although it may end up being pointless. If you live in Washington DC, wouldn't you be able to just move to a different location if you can lawfully do so and then keep whatever you get somewhere else (away from your girlfriend who could be impacted) and that way if things get worse you would have it? Or just pay the suicide clinic in advance? I understand your fears on losing eyesight completely and then being unable to find a good way to end things and being in pain and possibly being dependent on others and unable to die. Being trapped like that is a horrible situation. It sounds like you don't want to ctb right now, you want to live if there's any way to get better, but you want the option available.

You indicated your financial situation is alright. Can you go down the list of top eye hospitals and see at least a few?

Have you drawn up a will so that your girlfriend will have something if things get worse? Would that help her out? Have you talked to the clinics in Switzerland?

I'm so sorry. They need to warn people more about Lasik and the things that can happen with when it goes wrong.

You seem like a nice person and I hope there's some doctor out there who is willing to try something new that could work. If the problem is inflammation, I don't know why they can't inject or apply strong anti-inflammatories to the area.

 

[dumed1]

I am not sure if anything can be done.

Your situation is terrible. I'm so sorry, and I'm so sorry they don't make it easier for people who want to end things.

I think you need to decide whether you are willing to live with the pain or without eyesight in order to be with your girlfriend. This sounds awful, but if they take your eyes out would the pain subside? Could you exist as a blind person and be happy or would that be too much to bare?

I would try to keep going to all the top Eye doctors and try a few things, although it may end up being pointless.

Yea, I don't think anything can be done, either. Maybe scleral lenses will help, but I think the corners of my eyes would still dry out because they're not covered by the lens. Autologous serum drops might help too, but even in the best case, not enough to get me to a reasonable quality of life. Other than that, I think I'm screwed, which is really terrible.

I don't want to die, but I also don't want to live like this. If it gets significantly worse, I will probably want to die. It seems to be getting worse every day, so that's probably going to happen unless I find a treatment that works. So far nothing seems to help except for large amounts of OTC eye drops and moisture seal glasses. But every day, my condition worsens so these things help less and less.

Yesterday, I discovered that I can't even cuddle with my girlfriend unless I am wearing moisture chamber glasses, which makes cuddling very difficult.

 

[SNastablesalt]

I can't use refresh drops, they don't stay for long enough. I think my dry eye is very severe - my tears evaporate instantly, and I don't have much of them to begin with.

I use optase dry eye intense eye drops, which I have to use several times an hour, every hour. I've tried a bunch of other drops (refresh, systane complete, refresh relieva, retaine mgd, hylo gel, meibo). Meibo works decently well but it makes my vision really blurry, and I need another drop to go underneath meibo. Meibo replaces the oily layer of the tear film that I don't have anymore, and the other drop replaces the aqueous layer which I also don't really have anymore.

I'm on eysuvis, which is like a much more expensive lotemax. It helps with the symptoms, but my eyes are still really dry. And I can't use it for much longer. At that point, I'm pretty sure pain will return.

I'm using cequa eye drops, which make my eye burn, but it doesn't look like they actually DO anything to increase my tear production or the quality of my tears. I'm taking omega3 supplements, but that's not doing anything. I'm trying manuka honey, which stings so much it makes my eyes water, but it's low quality tears that evaporate fast. So, I don't know if it's worth it. But it seems to have anti-inflammatory properties, so maybe it will help?

It seems like whenever I find something that works, even if it's ridiculous like wearing goggles to go outside, my condition gets worse and that no longer works well enough. Now I need fully-sealed goggles in order to go outside, which means they fog up almost instantly and are really unpleasant to wear. Since the outdoors is my happy place, the place that I used to go to escape feelings of depression and suicide, I don't know how much longer I can tolerate my condition. Maybe if I was mentally healthy before this happened, I'd be able to live on with a severely reduced quality of life, and stay positive. But this is just too much, I think.

Still, even with all these symptoms, RIGHT NOW I don't want to die. Maybe it's my girlfriend's support. Maybe it's my friends' support. Maybe it's that I'm curious about what the future will bring (societally and for my friends and family, even if I'm just an observer). Maybe it's because I finally figured out a way to sleep through the night. But I suspect this will wear on me, especially since it's hard for me to go outside and get exercise. I guess if I died right now I wouldn't be too disappointed, but I'm not at a point where I definitely want to die.

I'll be making exit bags later today because it makes me feel better knowing there's a way out from dealing with this pain.

you deserve a painless way out. I'm so sorry.

 

[Esokabat]

Just to chime in, other than the omega supplements, I would actually eat real food daily that is proven to increase tear quality. No supplement can beat actual real fresh food.
So my recommendation would be salmon, egg yolks, cod liver, and any other liver like chicken liver. Don't eat the liver daily as it can cause vitamin A toxicity. Beta-carotine is not a real substitute of actual vitamin A as some people are very bad converters (from betacarotine to vitamin A).
Also, I notice that heat for me helps with tear production and tear quality so I shower hot water on my closed eyes and entire face daily. If this dry you out even more, then find other heat source.
Avoid all seed oils and margarine. If in a restaurant, ask them to use olive oil, butter or lard, if they have them, not seed (vegetable) oil. Some restaurants only have seed oils as they are tbe cheapest but they cause inflammation and correlated with various eye iaaues.

I was not aware that you can go blind from dry eyes. I am going blind due to the death of the optic nerve (glaucoma), which is permanent, but I also went blind in my life due to cornea failure which was sold with a cornea transplant.
I had about 15 eye surgeries so far. I am permanently on steroid drops due to the transplant.
I have an artificial iris, various shunts, iris missing, pupils unresponsive, lots of stuff going on but no dry eyes. But I did notice that if I don't do the heat treatment each day, I start to get dryer eyes. I do a very hot bath each day and then hot water on my closed eyes for a few minutes.
As far as inflammation, the ketogenic diet does bring down inflammation systematically in the whole body, I think it works stronger than some anti-inflammatory drugs, it will even stop joint pain and other inflammatory processes.
I definitely don't think that taking omega supplements are as effective as actually eating that salmon, egg yolks, cod liver, etc.
And you have to try to completely eliminate seed oils even if this means not eating out in restaurants

 

[dumed1]

you deserve a painless way out. I'm so sorry.

Thank you. To be clear, I don't currently want to die, although I think about death constantly.

I've gone through many depressions and suicidal ideations, and have come close to purchasing the gear before, just due to mental issues / loneliness.

I felt like a failure, I was living with my abusive parents, jobless, friendless, etc. But because I didn't commit suicide, I was able to get a high paying job, become rich even, travel the world, make a bunch of friends, get a girlfriend, get an amazing apartment, etc. So for mental issues alone, I don't recommend suicide, as these tend to resolve with time, therapy, treatment, and lifestyle changes. I even tried every anti depressant treatment and it didn't work, but my depression still got better anyway, with time and lifestyle changes. So it gets better, I know that.

But dry eye... Dry eye gets worse. It's unlikely with my condition that I'll be able to live a normal life again.

I was not aware that you can go blind from dry eyes.

You usually can't, but with the severity of my dry eye, it's very easy for the eye to completely dry out and then tear the cornea while blinking or moving the eye.

I am going blind due to the death of the optic nerve (glaucoma), which is permanent, but I also went blind in my life due to cornea failure which was sold with a cornea transplant.
I had about 15 eye surgeries so far. I am permanently on steroid drops due to the transplant.
I have an artificial iris, various shunts, iris missing, pupils unresponsive, lots of stuff going on but no dry eyes.

I am so sorry to hear this. Going blind is terrifying and eye problems in general cause depression more than other health issues (I've had other weird health issues and my eye problems feel much worse).

As far as inflammation, the ketogenic diet does bring down inflammation systematically in the whole body, I think it works stronger than some anti-inflammatory drugs, it will even stop joint pain and other inflammatory processes.
I definitely don't think that taking omega supplements are as effective as actually eating that salmon, egg yolks, cod liver, etc.
And you have to try to completely eliminate seed oils even if this means not eating out in restaurants

It's tough for me to take care of myself right now, so I've been eating out more than usual. Probably not good for me. But I have been trying to eat more salmon. I'll try to do a ketogenic diet. I suspect it won't do much but who knows.

 

[sanctions]

You seem like a nice person and I hope there's some doctor out there who is willing to try something new that could work. If the problem is inflammation, I don't know why they can't inject or apply strong anti-inflammatories to the area.

I second this. I would have thought your eye doctor would have put you on something strong than eysuvis, or at least let you use eysuvis 4x a day.

I've had a few bouts of iritis over the years, and my eye doctor always put me on a stronger corticosteroid than lotemax to get rid of the iritis.

Just looking through my stash of bottles i see these three:
prednisolone acetate
dexamethasone
difluprednate

I think these are all stronger than eysuvis, although not safe for daily use for months/years on end like eysuvis can be.

Also, I have all my windows in my house blacked out by these covers so almost no sunlight gets in: https://blackoutez.com/

 

[needthebus]

Yea, I don't think anything can be done, either. Maybe scleral lenses will help, but I think the corners of my eyes would still dry out because they're not covered by the lens. Autologous serum drops might help too, but even in the best case, not enough to get me to a reasonable quality of life. Other than that, I think I'm screwed, which is really terrible.

I don't want to die, but I also don't want to live like this. If it gets significantly worse, I will probably want to die. It seems to be getting worse every day, so that's probably going to happen unless I find a treatment that works. So far nothing seems to help except for large amounts of OTC eye drops and moisture seal glasses. But every day, my condition worsens so these things help less and less.

Yesterday, I discovered that I can't even cuddle with my girlfriend unless I am wearing moisture chamber glasses, which makes cuddling very difficult.

My friend had complications from Lasik and has very dry eyes that are painful. Who is the best doctor on the planet for this problem?

Answer

For severe dry eye complications following LASIK surgery, it's crucial to consult a specialist with extensive experience in managing post-LASIK complications. While it's difficult to definitively name a single "best doctor on the planet" for this issue, there are several highly regarded experts in the field of corneal and external eye diseases who specialize in treating complex dry eye cases, including those resulting from LASIK complications. Some top specialists in this area include:

Dr. Stephen Pflugfelder at Baylor College of Medicine in Houston, Texas. He is renowned for his research and clinical work on dry eye disease and ocular surface disorders
Dr. Edward Holland at the Cincinnati Eye Institute. He is a corneal specialist with expertise in complex anterior segment surgery and ocular surface diseases
Dr. Christopher Rapuano at Wills Eye Hospital in Philadelphia. He is known for his work on corneal diseases and refractive surgery complications

These specialists have extensive experience treating severe dry eye cases and are often sought out for complex post-LASIK complications. However, it's important to note that there are many skilled ophthalmologists and optometrists who specialize in dry eye treatment and post-LASIK care. For your friend's specific case, consider the following steps:

Seek a comprehensive evaluation from a corneal specialist or dry eye expert. They can assess the severity of the condition and recommend appropriate treatments

Explore advanced treatment options. These may include autologous blood serum drops, special contact lenses, or procedures to unblock oil glands
Consider combination therapies. Severe cases often require a multi-faceted approach, potentially including prescription medications, in-office procedures, and lifestyle modifications. Be patient with the treatment process. Resolving severe dry eye can take time, and the treatment plan may need adjustments along the way

If local treatments are not providing relief, consider seeking a second opinion or referral to a major eye center specializing in complex cases.

Remember, the "best" doctor for your friend will be one who not only has expertise in treating post-LASIK dry eye but also takes a personalized approach to their specific case. It may be beneficial to start with a highly regarded specialist in your local area or region, as ongoing care and follow-up will be important in managing this condition.

This is an article by the guardian about how others have gone through the same problem as you and some have ended their lives. It may be triggering:

The patients who regret laser eye surgery: ‘My life’s stood still since then’

Surgeons view Lasik as routine, but patient advocates and some experts say the complication rate is far higher than reported

www.theguardian.com

I would contact all 3 doctors suggested by AI and if none of them can help, you've at least tried everything you can. It sounds like you could afford to see all three doctors. I would at least call all 3.

 

[YourEarthRoommate]

But it's very hard for her to take care of me, and I don't want her life to end just because she's dating me. It's not a very long relationship, it just moved very fast.

Her life wouldn't end man. She got with you because of who you are, and you're still that person. Look at what you bring to the table. What does she have to do to help?

Yes, it's true. I am grieving what my life could have been without getting lasik, compared to what it is now, and also the worst case scenario of losing my vision completely (it's declining rapidly). The problem with all the things you mentioned is that I don't enjoy any of them. Playing music is especially traumatic for me due to childhood abuse around music. I think the core problem is that I was already close to suicide even when everything was fine, and this disability is pushing me over the edge.

Making art is good and all, but I am not a very creative person. I did consider learning to draw, and that is still something that I could do.

Yeah those hobbies aren't for everyone. You would definitely benefit from channeling yourself into something though. I learned how to play the drums and it's one of the best decisions I've made. I could watch myself get better too, which really built my self esteem.

Yea this would be the ideal. Unfortunately, as someone who had a lot of difficulty doing normal things in life before this, I am not sure that I would be able to step up. Even simply surviving is using up all my energy. Also, it's not clear that this adversity is undeserved - I shouldn't have gotten lasik, even if this dry eye situation hadn't happened, I would have still regretted my decision as my vision was not actually as stable as I hoped, I kinda tricked myself into believing that it was.

Life can be cruel and I'm sorry you're struggling like this. When "doing normal things" is difficult, you're in a really rough spot. I know next to nothing about your real-life self, but from the little I've read here, I can picture you stepping up. In your own words: "Because I didn't commit suicide, I was able to get a high paying job, become rich even, travel the world, make a bunch of friends, get a girlfriend, get an amazing apartment, etc." You can't get much better evidence of capability than that. You're situations changed, but you're still that dude.

On your undeserved adversity point, it's bullshit and I address it later.

Yes I have the Ziena Kai. They are fine and they allow me to go outside and do things, as long as I put in eyedrops every 30 minutes or so. I have anti-fog wipes, which don't really seem to be doing much. I'll try fogaway.

Hell, if I were you I'd order the top 10 on Amazon and keep trying until one worked. Don't have much to loose there.

Bad idea when there's inflammation in my tears (which there is right now). It will trap the inflammatory cytokines on my eye and worsen everything.

I see. Did your doctor tell you that or did you find a source making that connection? From what I was able to find, it looks like the claim "punctal plugs trap cytokines, thereby worsening symptoms" is a hypothesis but not proven.

The Singapore Eye Research Institute actually conducted a study on this and concluded:
"Punctal plug occlusion provided symptomatic relief and reduced fluorescein staining in all except the inferior zone. However, insertion of punctal plugs had minimal effect on tear cytokines and MMP-9 levels, suggesting a need for earlier treatment with anti-inflammatory agents for management of dry eye disease."

Source: https://www.sciencedirect.com/scien...sing,ocular surface from ongoing inflammation

The study shows that punctal plugs don't help with inflammation of the eye (they don't decrease cytokine levels), but they do still decrease tear evaporation rate and relieve other symptoms of dry eyes. The conclusion from their perspective was "punctal plugs are insufficient in treating ocular inflammation in patients with dry eyes," not that they were detrimental. I interpret this as: "combination therapy would be needed to address information, but plugs are helpful for treating dryness."

I'm not a doctor, but just intuitively, punctal plugs would need to have an effect on cytokine levels to cause any additional damage via that mechanism. If punctal plugs don't affect cytokine levels in typical eyeballs, they would presumably not affect cytokine levels in yours, despite them being high beforehand. I think you should research this more yourself, discuss this with your doc, or get a second opinion. I understand why you would be cautious, but remember, you can always just pull them out.

Yes, it's on the list of things to try. But maybe a last resort. My eyesight is fluctuating / declining so quickly right now that I'm not sure what kind of scleral lense I should even get. It's also tricky to get scleral lenses if TBUT=0 and there's few natural tears in the eye. The scleral lens doesn't cover the entire eye, so the corners of my eye would still get very dry.

Interesting, I wasn't aware of that. I do still think they're worth trying, especially if money isn't a major factor. Though, you'd want a doctor who believes in their merits if you're skeptical. Like some others have said, finding a good specialty doctor would probably be worth it.

Yes this is all good advice, thank you. I do have a humidifier for the winter, but I am running the air conditioner right now so it doesn't really make sense.... Humidity is at 50% though, not too low.

Do you think pushing it up to 70% is worth a shot? Your AC will pull the water out, but you could run a humidifier in your bedroom or living room to keep the RH elevated there.

Right now, I think the main problem is my attitude / major depression/anxiety being triggered as a result of my eyes. When I get depression, I end up contemplating suicide a lot, even when things are totally fine in my life. And I tell myself it's going to be ok, you're fine, everything is fine. But I can't really tell myself that right now. And I can't use a lot of the coping strategies I used to use, because they either involved looking at screens, going outside, or socializing, all of which are difficult for me right now.

Losing coping mechanisms is an extra insult to your literal injury. You really need an outlet of some kind. Something to be passionate about that's not affected by this. I hope you can find that.

And a lot of it is me blaming myself for getting lasik. I clearly had dry eyes beforehand, because I couldn't wear contacts for the entire day. I didn't think I had dry eyes because I never had to put in eye drops. But I should have done more research, and realized that my eyes were dry, and that getting lasik was especially risky for me. I always do a lot of research before doing anything. Except for this. What was I even thinking?

That's just plain false and unfair. You did something to improve yourself (which is commendable) and got screwed. That's it. It's absolutely not your fault and it could have happened to anyone, mildly dry eyes or not. Dry eyes aren't even a disqualifying pre-condition. According to the Modern LASIK Outcomes study, only 1.2% of patients reported being "dissatisfied" with their surgery after 6 months (n=9726), and I'd wager a massive chunk of that was just inadequate correction. Don't blame yourself for a meteor falling on your head. https://pubmed.ncbi.nlm.nih.gov/27531300

Wishing you the best.