17 years old, PLEASE HELP

[tagclouder]

Since August I have had constant pain and I have never felt normal. I literally cannot think about anything except my dry eyes. It's getting worse thanks to winter.

I was first diagnosed with blepharitis. Later I was told I have an aqueous deficiency when I scored a 3 mm and 5mm on the Schirmer's test.

The doctors suspect I have an auto-immune disease like Sjogren's but the bloodwork came back negative for all of them (of course, that doesn't rule it out completely)

Here is my regimen:
Xiidra 2x/day (1 month)
Lid scrubs + warm compress 2x/day (4 months)
Sleep with night goggles
Artificial tears/gel
Refresh night ointment
Humidifier in my room

I had a nose surgery (septorhinoplasty) to help breathing in August and the dry eyes kicked in a few weeks after that. But I had dry eyes a week before the surgery too. And I was diagnosed with Dry Eyes a year before that but it was easily resolved with an artificial tear. Now it won't go away

The doctors don't think its related to the surgery. The surgeon didn't operate anywhere near my tear glands but he says he may have increased the drainage (which doesn't explain my low tear production)

I am so scared it's going to be like this forever. It's already been 4 months with absolutely no improvement. And from what I've heard, aqueous is much less treatable than MGD.

Any advice would be much appreciated. Thanks for reading

[PotatoCakes]

I found Xiidra made my eyes worse, not better, and apparently, that's not an uncommon thing. It made my eyes feel even more gritty and they would sting -- worse than Restasis ever did for me. You might talk to your doctor about whether or not it's the right thing for you. Restasis worked for me in the beginning but no longer does -- so I rely on ASED drops and preservative free tears like Refresh Plus.

I'm really sorry to hear that you are dealing with this at such a young age. I was in my 20s when I started noticing it and it's not easy. I can tell you, it does get easier to deal with emotionally but you may need to go through a myriad of feelings to get there (it sort of felt like a death to me but when I decided that was a enough of mourning what I didn't have and I was lucky to still be living, etc then I managed mentally, much better).

There's a gazillon tips for you to try -- dry eye disease is definitely not a one size fits all disease and you will likely need to try multiple things before finding the best way to manage your symptoms (and unless something like Xiidra or Restasis work for you, that's what you will be doing).

Do you like your eye doctor? That's a big deal. Even though I can only manage my symptoms and see my doctor once a year, the fact that I like and trust my doctor to work with me makes a huge difference in my mental state regarding this disease. Before my current doctor, I was seeing a doctor who thought he knew everything and when what he tried didn't "cure" me, he blamed me for failure to follow instructions. He was and is an idiot. He also disparaged other doctors and was offended that I got a second opinion. Good doctors don't do that. This is a chronic disease so you need to have a doctor that listens and one that you trust. Not one that makes you feel like the world is ending every time you see him or her.

My first doctor had me on a regimen similar to yours and it wasn't helping me. It did drive me crazy and ruled my life. Warm compresses multiple times a day can be a lot to add to an already busy schedule. If they help you, great, keep doing them. But, if you feel like you really aren't getting any positive results from them, stop doing them for a bit and see how your eyes react.

Try a number of different *preservative-free* tears. There are lots out there and you may find that one works better than another. I, personally, like Refresh Plus because things like Systane make my eyes feel sticky but there are people who love drops like Systane or Optive that aren't helped by Refresh Plus. The only way you'll know what works for you is to try a bunch of them. Try to use just one type for a whole day, make notes if you need to so you remember how they make your eyes feel, and then you'll better know what kind of drops work for you.

Consider ASED (autologous serum) drops. They've been a lifesaver for me and many others. Like artificial tears though, they don't work for everyone. You'll want to talk to your doctor about them to see if they are something you can and should try.

The humidifier is smart. I don't do well with goggles at night so I cut rectangles of plastic wrap (Glad wrap is a favorite on this site and so that's what I use) and press them onto my eyelids. There are a number of different goggles out there. If you don't like yours, there are people here that can give you some thoughts on what works for them.

Night ointments... I found that after use, my eyes were more red, puffy and dry than without. I developed a mild allergy to petroleum. Lots of people don't have this problem but it's good to be aware of just in case. If I need something extra at night, that's when I use things like Systane drops or Optive.

Talk to your doctor about taking fish oil supplements. You can get Barleans if taking the capsules are difficult. Barleans tastes pretty good and there are a few flavors to choose from. Costco carries another brand; I've forgotten what flavor they carry. Fish oil likely won't "cure" you but it may help a bit, especially if you aren't producing enough oil.

I know others will have more advice and ideas. I know this is difficult and you are just beginning your journey. Chronic diseases are difficult to deal with. But, this isn't a death sentence and it needn't ruin your life. You can adjust and learn to manage your symptoms. Hopefully, someday, there will be a cure. In the meantime, hang in there.

[farmgirl]

Hi Tag: I want to address one common cause of dry eye in young people and that is electronic devices.

I have said it before and I will say it again. 6 years ago when I started on this forum I rarely heard of computer related dry eye, it was mostly post lasik. I see more and more of it lately and sadly I predict an epidemic in the future as we become more and more dependent on electronic devices. I posted this on another thread but here it is again. Excessive computer usage CAN cause meibomian gland dysfunction. Between texting, e-readers, work and school computer usage, video games, TV, home computer usage...the list is endless if you add it up in a day for many people the hours would be staggering....think about it.

Here is a great article on the importance of proper meibomian gland function and the possible causes of dry eye relative to the same, for all of you who suspect that excessive computer usage has lead to your current symptoms. This of course is not exclusive to excessive computer usage but the association is important.

https://www.reviewofoptometry.com/ar...nd-dysfunction

• Digital devices. With the ubiquity of computers, tablets and smart phones, the latest addition to the pathophysiology behind meibomian gland dysfunction is what was once called “computer vision syndrome.” The main culprit: decreased blink rate. On average, a person blinks around 15 times per minute. Studies show that during computer use, the blink rate decreases by 60% to about 4.5 blinks per minute.¹⁵ As discussed earlier, the action of blinking releases the meibum from the meibomian gland, delivering it to the lid margin. With less frequent blinking, meibum build-up creates similar long-term issues with acinar and meibomian gland atrophy.^15,

Given the nature of your problems would severely restrict my usage of these devices to only that which is essential even if it is not the primary cause of your problem.

[pythonidler]

For the aqueous deficiency, I would see if your doctor could change you from Xiidra to Restasis. Restasis may help you increase your aqueous tears a little - probably not a lot, but enough to make a slight improvement.

It would also be helpful for the doctor to check for meibomian gland dysfunction (MGD), as others have mentioned. MGD is supposedly more common in dry eye patients than aqueous deficiency, but you CAN have both (I do). Also, try to get a picture of your meibomian glands if you can (the images are called meibography). With meibography, a good doctor will be able to tell whether your meibomian glands are clogged, are atrophied, have scar tissue, or are some combination of what I just mentioned.

The first step towards feeling better is getting an accurate diagnosis - the sooner that happens, the sooner you can feel better.

[tagclouder]

Given the nature of your problems would severely restrict my usage of these devices to only that which is essential even if it is not the primary cause of your problem.

Thank you for your answer. I recently started using Eye Zen glasses while looking at the computer to fight digital eye strain. Is this enough or do I need to stop using devices altogether?

[tagclouder]

I found Xiidra made my eyes worse, not better, and apparently, that's not an uncommon thing. It made my eyes feel even more gritty and they would sting -- worse than Restasis ever did for me. You might talk to your doctor about whether or not it's the right thing for you. Restasis worked for me in the beginning but no longer does -- so I rely on ASED drops and preservative free tears like Refresh Plus.

I'm really sorry to hear that you are dealing with this at such a young age. I was in my 20s when I started noticing it and it's not easy. I can tell you, it does get easier to deal with emotionally but you may need to go through a myriad of feelings to get there (it sort of felt like a death to me but when I decided that was a enough of mourning what I didn't have and I was lucky to still be living, etc then I managed mentally, much better).

There's a gazillon tips for you to try -- dry eye disease is definitely not a one size fits all disease and you will likely need to try multiple things before finding the best way to manage your symptoms (and unless something like Xiidra or Restasis work for you, that's what you will be doing).

Do you like your eye doctor? That's a big deal. Even though I can only manage my symptoms and see my doctor once a year, the fact that I like and trust my doctor to work with me makes a huge difference in my mental state regarding this disease. Before my current doctor, I was seeing a doctor who thought he knew everything and when what he tried didn't "cure" me, he blamed me for failure to follow instructions. He was and is an idiot. He also disparaged other doctors and was offended that I got a second opinion. Good doctors don't do that. This is a chronic disease so you need to have a doctor that listens and one that you trust. Not one that makes you feel like the world is ending every time you see him or her.

My first doctor had me on a regimen similar to yours and it wasn't helping me. It did drive me crazy and ruled my life. Warm compresses multiple times a day can be a lot to add to an already busy schedule. If they help you, great, keep doing them. But, if you feel like you really aren't getting any positive results from them, stop doing them for a bit and see how your eyes react.

Try a number of different *preservative-free* tears. There are lots out there and you may find that one works better than another. I, personally, like Refresh Plus because things like Systane make my eyes feel sticky but there are people who love drops like Systane or Optive that aren't helped by Refresh Plus. The only way you'll know what works for you is to try a bunch of them. Try to use just one type for a whole day, make notes if you need to so you remember how they make your eyes feel, and then you'll better know what kind of drops work for you.

Consider ASED (autologous serum) drops. They've been a lifesaver for me and many others. Like artificial tears though, they don't work for everyone. You'll want to talk to your doctor about them to see if they are something you can and should try.

The humidifier is smart. I don't do well with goggles at night so I cut rectangles of plastic wrap (Glad wrap is a favorite on this site and so that's what I use) and press them onto my eyelids. There are a number of different goggles out there. If you don't like yours, there are people here that can give you some thoughts on what works for them.

Night ointments... I found that after use, my eyes were more red, puffy and dry than without. I developed a mild allergy to petroleum. Lots of people don't have this problem but it's good to be aware of just in case. If I need something extra at night, that's when I use things like Systane drops or Optive.

Talk to your doctor about taking fish oil supplements. You can get Barleans if taking the capsules are difficult. Barleans tastes pretty good and there are a few flavors to choose from. Costco carries another brand; I've forgotten what flavor they carry. Fish oil likely won't "cure" you but it may help a bit, especially if you aren't producing enough oil.

I know others will have more advice and ideas. I know this is difficult and you are just beginning your journey. Chronic diseases are difficult to deal with. But, this isn't a death sentence and it needn't ruin your life. You can adjust and learn to manage your symptoms. Hopefully, someday, there will be a cure. In the meantime, hang in there.

Thank you very much for your response. I'll ask my doctor about AESD

[farmgirl]

For the time being tagclouder, I would limit my usage of these devices to them bare minimum and do everything suggested online to minimize the damage when I do use them.

[MGD1701]

Hi Tagclouder

combination of Omeag 3 + GLA: should help, including tear production, oil quality, control inflammation

if glands are too clogged (with hard secretion etc) -- good to unblock sooner before getting worsen, by IPL, LipiFlow, manual expression etc.

warm compress is important but takes a bit skills - invest some time to figure out how to achieve results -
make sure enough (constant) heat/duration.

Plugs may help you, if you dont have inflammation issue.

Lastly, keep inflammation under control is most important, good diet and lid hygiene are important.

Good luck!

[hosanna13]

Have you been worked up for autoimmune things like Sjogrens? There's really no reason for you to have AD without a cause, like trauma (LASIK, TEN, etc) or autoimmune damage to lacrimal glands. Definitely get lower punctal plugs and look into scleral lenses for the most bang for your buck; it's the closest thing to a "cure" with our current technology and knowledge.

[farmgirl]

I don't recommend Scleral lenses as a first line of defense, they are very expensive and and not guaranteed to make a difference. Personally I have paid, for 2 pairs something in the order of $1800 and can't tolerate either. Plugs, that is a different story. They are relatively inexpensive and can be a real game changer if they work. I ended up needing all 4 plugged but I could never manage without them. Moisture chamber glasses can be very effective as well. Above all else, avoid staring at a screen for hours on end.

[tagclouder]

Plugs, that is a different story. They are relatively inexpensive and can be a real game changer if they work. I ended up needing all 4 plugged but I could never manage without them. Moisture chamber glasses can be very effective as well. Above all else, avoid staring at a screen for hours on end.

I got lower plugs put in last week. There is somewhat of an improvement; sometimes I can't stop crying in my left eye. But it wasn't a game changer so far. Maybe they aren't super effective because they are temporary and dissolvable?

[Idealist321]

Hi Tagclouder,

I also have MGD which was caused by looking at the eclipse for a few seconds without protective eyewear back in August 2017. I've been miserable and sad about it but have been managing with my treatment. I apply a drop of pure, cold pressed castor oil every night before bed and I also take fish oil supplements 3x per day. My eyes are comfortable throughout the day but my meibomian glands still don't produce oil even with a hot compress. I think the lack of oil is what prevents me from sleeping more than 4 to 5 hours a night. I also don't feel well-rested because I don't fall into deep sleep very much. It's like my eyes are closed but not asleep which is frustrating. Do you have issues with sleep? Have your symptoms improved since you last posted?

[pythonidler]

Hi Tagclouder,

I also have MGD which was caused by looking at the eclipse for a few seconds without protective eyewear back in August 2017. I've been miserable and sad about it but have been managing with my treatment. I apply a drop of pure, cold pressed castor oil every night before bed and I also take fish oil supplements 3x per day. My eyes are comfortable throughout the day but my meibomian glands still don't produce oil even with a hot compress. I think the lack of oil is what prevents me from sleeping more than 4 to 5 hours a night. I also don't feel well-rested because I don't fall into deep sleep very much. It's like my eyes are closed but not asleep which is frustrating. Do you have issues with sleep? Have your symptoms improved since you last posted?

You can't get MGD from looking at an eclipse. MGD is something that you develop over many many years. It's possible you do have MGD and your pain is from MGD, but looking at the sun didn't cause it.

[Idealist321]

Well, I did get MGD the very next morning because I have never had dry eyes nor MGD prior to the eclipse. My eyes were healthy and well lubricated. Ive communicated with other people who experienced dry eyes after the eclipse so I know I am not the alone one that can validate my truth. If you'd like to offer advice on how I can improve my sleep I welcome it.

[pythonidler]

Well, I did get MGD the very next morning because I have never had dry eyes nor MGD prior to the eclipse. My eyes were healthy and well lubricated. Ive communicated with other people who experienced dry eyes after the eclipse so I know I am not the alone one that can validate my truth. If you'd like to offer advice on how I can improve my sleep I welcome it.

It's possible your symptoms were triggered by the eclipse, but meibomian gland dysfunction is a CHRONIC disease. It's mainly caused by not blinking enough when in front of a computer or other electronic screen. And again, this happens over the course of many years. There's no such thing as acute MGD.

If your symptoms are really from MGD, then there's a lot of treatment options for it. I recommend that you buy a warm compress (you can find it at a Walgreen's, CVS, or on Amazon).and start using it daily, if you're not doing it already. Also, start taking 1000 - 2000 mg of omega-3s daily - brands I recommend include HydroEye, PRN Dry Eye Omega Benefits, and Nordic Naturals Ultimate Omega.