I am blind due to glaucoma, so while my vision lasted I religiously took medication every morning and evening, however now that my vision is gone I no longer need that medication since the pressure in my eyes is not enough to cause pain.

Oh man, a kindred spirit! I had a rare and severe drug reaction called Stevens-Johnson Syndrome/Toxic Epidermal Necrolysis about 3 years ago. It wreaked havoc on my body and immune system, but long story short, it left me with corneal scarring and zero tear production (scarred tear glands and ducts). Since then, I have used preservative-free eyedrops daily (literally use a box/day) and have to use mineral oil/petrolatum ointment at night. I tried autologous serum drops a couple of years ago, but they were just too expensive ($400 for a 6 week supply and not covered by insurance) and didn’t really help curb my existing eyedrop usage. I’m with you on them being a pain in the butt to store, as well. I had to travel around with ice packs in a YETI thermos just to leave the house.

The SJS/TEN basically threw me into an autoimmune storm, so I’m currently on prednisone and methotrexate to keep my corneas from melting again, among other autoimmune issues. With the myriad problems SJS/TEN left me with, I really feel like the lack of tear production is one of the most challenging physical issues I’m dealing with. It affects EVERYTHING I do. And is stupidly expensive to treat, too. The drops I use are mineral oil based and cost about $20-25/box out of pocket, as again, insurance won’t cover them since they’re OTC. Last year I spent around $7k for the drops alone.

Are you using any other drops in conjunction with your serum drops? If so, do you mind me asking which ones are working for you? I’ve tried a ton of different ones, but they all seem to get sticky when they run down my face and end up irritating/chafing my skin.

I am so sorry you’ve had to deal with no tears your entire life. I feel your pain and know that it sucks, big time. Also, I’m not sure if you’ve tried it, but when I traveled via plane a couple of years ago, I had my corneal specialist write a letter/prescription for me to present to TSA stating my specific medical needs for my drops (and in your case, the required dry ice/cooler set up). I was terrified that they would fight me on having to bring so many boxes of drops in my carry-on luggage, since I can’t be without them for any length of time, but they just read it and sent me on my way. Hopefully something like that might ease your travels, too.

Best of luck to you.

I take 4 medications 4 times a day to try to halt my vision loss. None of them require any refrigeration. However, I have been having a very difficult time "dosing" my meds. I take 38 pills a day for various reasons (I have Behcet's disease, as well as depression and migraines) and so opening up a bunch of different pill bottles daily is a hassle. It's generally easier to put them in a med organizer. I've gotten better at doing this, but I don't always get it right. The last time I screwed up I overdosed myself and ended up having a pretty serious seizure. After that I asked my doc about getting me a home health nurse to come dose my meds weekly so there are no issues. She told me no, and my pharmacy doesn't do dosing. So now I'm back to square one. Meds while blind are super frustrating. I kind of took being able to do these kinds of things for granted when I was fully sighted!

Would something like $1 be an option when travelling?

Not advice, but I just want to say I'm so sorry you have to go through all that bullshit. :( I empathize with you.

First a bit of backgrounjd. I was born prematurely, so I have retinopathy as a result. But the failed surgeries to reattach retinas left me with similar problems to some in this thread. That is extremely dry eyes, and some sleep issues because I don't get the signal to go to sleep. You probably don't have that because you priobably have some light perception. I used to put eyedrops in, but they're annoying to dose, because they're really almost impossible to feel. CBD oil turned out to be cheaper than eyedrops, because 5 times a day was annoying. I have to get some help to put the oil in the right spot, but once every morning is much less of a pain in the ass. It needs to be refrigerated, but that is it. Some combination of a tiny amount of cannabis before bed, and some vitamin d when I wake up, seems to make the body figure out when it should produce energy, and be alert. THC seems to be more effective than the synthesized melatonin or other sleep things. A doctor told me that my issues cannot be solved with typical medication, which is why I tried this. You can get CBD gummies that don't need to be refrigerated, but they don't last as long as the oils. CBD might be hard to travel with, though, sadly. The best I could recommend in that case is see if you can get something from a Chinese herbalist or something like that. Often their methods are quite good.

I also have hsd glaucoma and dry eye my whole life. At this time my regimen is 6 drops in the morning, 2 in the afternoon, and 5 in the evening. For my dry eye, I am using Restasis now but should it get any worse I will have to have the special drops like you describe.

I'm afraid to travel for extended periods of time because of the refill schedule of my drops. It's a bit frustrating, yeah. I hadn't known how sensitive the special dry eye drops are, so crossing my fingers I get to avoid those for a while.

I have chronic pain from a botched surgery that was SUPPOSED to help. But my condition other than that is physiological from birth so unless there’s a pill to grow a new optic nerve/brain parts that I haven’t been told about I’m all good for pills lol. I used to take painkillers for the chronic pain but I weaned myself and just live with it now.

Have you ever discussed surgery to reduce your pressure? My partner had it done about a year and a half ago because the drops were not doing very much for him. Basically they cut a hole in your eyeball to release the pressure I don’t know the details of the surgery because it was cringe inducing but it greatly reduced the number of drops he had to take and got his pressure under control.

I'm on 3 medications for Uveitis.
Steroid injections
Humira injections
Methotrexate tablets

Soooo many frustrating side effects.

I refuse to take steroids. Sorry. Doctors keep wanting to prescribe them and I say no.

I don’t and do take drugs for my eyes.. My eye is all pretty much collapsed but I have a very stable but rare condition. It’s called peter’s anomaly. It’s been unofficially diagnosed and another doctor recently said yeah, probably peter’s anomaly. I now know one other person with that condition but it’s super rare.

I have dried eyes but I don’t take anything for it, and I seem okay. But I could take something for it. NO harm done if I don’t. I have allergy eye drops which is purely optional. I should probably take it more.