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Blind and Visually Impaired Community

Full History - 2019 - 05 - 30 - ID#bv16fs
4
How to cope with eye pain every day (self.Blind)
submitted by fairlyfairies
Does anyone on here have an eye disease that causes them pain all the time? I am not blind (yet...) but have posterior uveitis and some mystery chronic conjunctivitis that I think must be autoimmune related. It's the mystery problem that is the cause of this pain. How do I deal with it when nothing my doctor has had me try is working. I can't drive at night because that's when the pain is worse. I feel like such a burden to the people around me and when the pain is bad all I can do is cry and wish I could scoop out my eyes with a mellon baller. Sometimes I just go to bed early because at least when I'm asleep I'm not in pain.
TK_Sleepytime 3 points 4y ago
Are you using ointments or drops? I have severe cornea damage due to chronic dry eye (a late effect of radiation similar to sjogrens) which caused the middle layer of my only eye to flare. Once diagnosed it took about a year to get relief and I still experience pain at times if I'm lax in administering drops. For about 3 months I used ointment all day and night to keep air from reaching the exposed areas. It was blurry all the time but it felt better. Then I switched to drops all day and ointment at night (just otc drops, restasis was not any more helpful and super expensive.) I also slept with a hydrating eye mask (goggles with wet sponges in them). I take prn dry eye fish oil capsules every day and use drops all day long. It finally feels tolerable a few years later and my sight stabilized. If I sleep with a fan I HAVE to use the mask and/or ointment or it starts all over again.
It's a horrible pain. I hope you get a second opinion and find relief!
fairlyfairies [OP] 1 points 4y ago
I have been using a few brands of preservative free artificial tears, and I just started to try a preservative free gel drop. I use the tears when the pain is really bad, so maybe 6-7 times a day because they are expensive as well. Although it helps them feel better when the drops are actually going in, within a minute it's back to feeling the same. Same for the gel. Honestly sometimes it even feels worse after a few minutes. I'm not sure if its the brands im trying or that I need to use them more often. They're just so expensive! But thank you for your insight, maybe I will look into a mask for sleeping. The pain is always super bad when I wake up in the middle of the night to go to the bathroom or in the morning.
TK_Sleepytime 1 points 4y ago
have you had your tear ducts plugged? I forgot to mention that. Your drops may be draining too quickly. My plugs kept falling out so I had my ducts cauterized and they are now scarred shut for life.

Make sure the drops and ointments you have do not contain lanolin. That can also irritate your eye.

I'm so sorry I don't have more advice. I know the frustration of wanting relief.
KillerLag 2 points 4y ago
Both uveitis and conjunctivitis are inflammations of different parts of the eye, so that could cause a fair bit of pain. Definitely consider seeking a second opinion, there may be some options for relieving the pain.
[deleted] 1 points 4y ago
[removed]
Carnegie89 1 points 4y ago
I have bilateral panuveitis. I use medical cannabis. It helps a lot with pain.
Stick81 1 points 4y ago
I have almost daily headaches from eye strain. When they are unmanageable, I will supplement my eye drop regiment with an ice pack to reduce the inflammation. Another method involves an ice pack on my neck or head, and warming my feet, this causes vasoconstriction, forcing blood out of your head and to your feet. This usually gives me enough comfort to take a nap or quietly listen to an audiobook.
fairlyfairies [OP] 1 points 4y ago
I have tried an icepack a few times in the past, i will try again tonight!
Sight404 1 points 4y ago
A few tangentially related anecdotes:


1) I quit drinking soda about five years ago and noticed a significant lapse in, what I thought were glaucoma related headaches. My IOP also dropped below 20 mmHg, but that might have been because I stopped smoking. Ironically, I smoked because it helped quell those headaches.


2) Especially this time of year, I have really bad allergies. I realized about a decade ago that antihistamines turned my eyes into raisins, and thus, I decided that sneezing three dozen times a day is a price I'm willing to pay so that my eyes don't dry out and scrape in their sockets (often debilitating). Without allergy meds, I still have to use heavy lubricating ointment (Retaine PM) two to three nights a week to keep em fresh.


3) Today for lunch, I had the spiciest Thai food I've ever eaten. For the first time in my life, my nose was sweaty. Anyway, my eyes are REKT and I'm going to bed early after I finish typing this.
bennetfoxy 1 points 4y ago
Have you tried CBD oil? Cannabis?
fairlyfairies [OP] 2 points 4y ago
My mom suggested that. Can't due to my employment unfortunately.
bennetfoxy 1 points 4y ago
We're working on legislation in Oregon to hopefully fix this! Give us a minute! I'd rather deal with stoned cops instead of raging alcoholic cops.
OutWestTexas 1 points 4y ago
Could you get another doctor’s opinion? Does wearing dark sunglasses help?
fairlyfairies [OP] 1 points 4y ago
I want to try to go to Wills eye hospital but im so nervous about trying to make the appointment soon enough, trying to get my records sent, etc. My current practice has such awful customer service I feel like it will be impossible to get them sent. Sorry I sound silly, I'm just so upset. And sunglasses don't help, I don't really have any photophobia I think.
bennetfoxy 1 points 4y ago
Call and make the initial appointment and let them worry about the details.
fairlyfairies [OP] 2 points 4y ago
I will try today, thank you.
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