What should I do next? Not seeing results yet.

[RestoredSparda]

I'm a bit desperate after trying so much for a while and not seeing results. I apologize if this is the wrong type of post for this section of the forum but I truly need some advice from those with more experience than me! 'll try and write down what has been going on, and I would love to hear if anyone could give me advice on what to try next, or what route to take!

I am 29 years old. I have been seeing an eye doctor that specializes in dry eye since August of 2017. Symptoms started out pretty moderate than in 1 to 2 months time went straight into severe. Can't even fathom not wearing moisture chambers 24/7 as within a few minutes to 30 minutes the pain and dryness is pretty intense. If I don't protect them there will be a flare up that lasts a while. Even while wearing moisture chambers it is a struggle as my eyes will be blurry, burn, sting, feel gritty, etc. all day. Varies from "this is tough" to this is "absolutely miserable", like most people here.

My doc says it is MGD, as a a handful of glands have died and a bunch more are clogged. I have been working on treatments and the last lipiview I received showed that one eye increased from 45 to 75, and one eye from 50 to 55 (not much). Still, I believe you need to be above 100 to not feel symptoms.

I have been on a few steroid drops for a couple of weeks at different times to bring down inflammation unit I got that a bit under control by wearing moisture chambers during the day. I have tried lipiflow, plugs in the bottom, blood serum drops (for the last 3 weeks), doxy, manual expression of glands 4 to 5 times by doctor, xiidra (admittedly only for 9 days as it was immensely painful and not covered by insurance), restates (same story but I am now trying again). I was tested for autoimmune diseases but they returned negative from a blood test. I am going to see an allergist soon to check off that box as well. I will also be getting gland probing in the middle of February.

My current routine is as follows (most of it for the last 3 months has not changed):
Fish oil and flax seed oil daily, one a day men's vitamin, lid scrub and clean morning and night, warm compress before bed (10 minutes, express glands manually after), moisture chambers on 24/7, blood serum drops every hour to every 2 hours, green tea in the morning and afternoon, drink a LOT of water throughout the day. Humidifier on in the room I will be in. Cold pack if needed for when pain increases. I wear the tranquil eyes at night "just in case they help", and put drops in (bio tears or systain ultra) throughout the night if I wake up. I will be getting vita pos ointment soon in the mail to try at night as well. Other ointments I have tried last as long as eye drops at night and cause more pain than good so I stopped using them.

I have recently in the last 3 weeks changed to only eating chicken, eggs, water, and vegetables and fruit. I stay away from chocolate and sugar as often as I can but am not perfect. Oh, and this all started at the end of August and I can say that I have not noticed any improvement since then. I used to be able to function about half a day without moisture chambers, then it changed to never for the last 2 months. It IS the middle of winter here though and moisture levels are very low.

I believe that is everything but feel free to ask any questions. Thank you!

[farmgirl]

Greetings Sparda:

Just reading the litany of things you have done or are planning to do. Really sounds like you are on the right track, koodos to you.

I notice that you are going to be doing probing next month and from everything I read that has helped a lot of people. There is someone who posted that the lipiflow didn't help them until after the probing had been done, too bad your treatments were not in a different order.

You didn't state how much time you spend on electronic devices cause it is really important to limit that as a lot of dry eye in young people is related to excessive computer use over the years texting, gaming, TV, Facebook, school, work, the list goes on and on.

If you are aqueous deficient you should know that Sjogren's cannot be ruled out with just a blood test as more often than not it does not show up. A lip biopsy is more accurate so that is something you might consider in time if you still suspect autoimmune.

I encourage you to stay the course and keep looking because in time you will almost surely improve....cheers.....F/G

[mbperso]

Hello Sparda,

Thanks for sharing.
I think you need first to identify the complete diagnosis and the causes.
Are you aqueous deficient ? =>You should do a Schirmer (or PRT) test.
Do you know your TBUT ? => ask the test

Lipiview:
From what I read LLT above 70 is ok. Some people with LLT=50 don't feel symptom. A professor told me the most important is the TBUT.
One eye increased from 45 to 75, it is very good, I suppose because of Lipiflow or something else ?
Do you know the % of lost glands ?
What about the % of partial blinks?

Probing
How do you know you need probing ?
The doctor didn't notice some scare tissue before doing Lipiflow ?
Hope this will improve symptoms, and unclog the glands.

Thanks to keep us informed

[RestoredSparda]

Greetings Sparda:

Just reading the litany of things you have done or are planning to do. Really sounds like you are on the right track, koodos to you.

I notice that you are going to be doing probing next month and from everything I read that has helped a lot of people. There is someone who posted that the lipiflow didn't help them until after the probing had been done, too bad your treatments were not in a different order.

You didn't state how much time you spend on electronic devices cause it is really important to limit that as a lot of dry eye in young people is related to excessive computer use over the years texting, gaming, TV, Facebook, school, work, the list goes on and on.

If you are aqueous deficient you should know that Sjogren's cannot be ruled out with just a blood test as more often than not it does not show up. A lip biopsy is more accurate so that is something you might consider in time if you still suspect autoimmune.

I encourage you to stay the course and keep looking because in time you will almost surely improve....cheers.....F/G

Thank you for the response farmgirl. I work at a computer for work so there is no getting around that. I do now take many breaks and use flux to cut down on the blue light that my screen emits. I also keep the screen very dim. Anyways, I'll continue what I am doing and hope of improvements. Where I am going for probing is a new place with a recommended dr. So perhaps I will question him for suggestions while I am there, or ask for a referral. Good to make new connections with more doctors!

[RestoredSparda]

Hello Sparda,

Thanks for sharing.
I think you need first to identify the complete diagnosis and the causes.
Are you aqueous deficient ? =>You should do a Schirmer (or PRT) test.
Do you know your TBUT ? => ask the test

Lipiview:
From what I read LLT above 70 is ok. Some people with LLT=50 don't feel symptom. A professor told me the most important is the TBUT.
One eye increased from 45 to 75, it is very good, I suppose because of Lipiflow or something else ?
Do you know the % of lost glands ?
What about the % of partial blinks?

Probing
How do you know you need probing ?
The doctor didn't notice some scare tissue before doing Lipiflow ?
Hope this will improve symptoms, and unclog the glands.

Thanks to keep us informed

Thank for all the questions! It keeps me on track. I am both aqueous deficient and do not have enough oil. I asked my doctor about a Schirmer test and he said he no longer does them as it does not help him decide on treatment. He does an inflammation test and tear "makeup" test instead. That's what his response was, but he has been working with me to treat the MGD as the number one cause. How will knowing the tear breakup time help me find treatment? I can assume it is extremely low as I must wear moisture chambers 24/7. lol.

I do not have an exact % lost but probably around 25 percent going off memory. He never gave an exact number, but I was walked through the lipiview scans and he pointed out which were dead and which were clogged one by one. Only on the lower lids though. On the left eye the bottom lid there is 3-4 white dots that he said were hardened oils. All of the glands in that area are dead. These white spots also scratch the eye when it is very dry. He felt there were enough unclogged as is from my past treatments but I obviously do not feel any better. Hence I am moving forward with probing as nothing else has helped. He did not mention scar tissue at any point. My blinks looked quite good. I only had 1 or 2 partial blinks out of 15 during the test.

I'll keep you all updated after probing. Here's to hoping either that or my constant routine begins to help.

[MGD1701]

Hi,
how about omega 3? Combined with gla works more effective.

what lid cleanser dr recommends?
Most dr in usa now recommend pure hocl, like avenova to control bacteria.

[RestoredSparda]

Hi,
how about omega 3? Combined with gla works more effective.

what lid cleanser dr recommends?
Most dr in usa now recommend pure hocl, like avenova to control bacteria.

I'm taking an omega 3 through fish oil and flax seed oil. I'm not sure what GLA is but would love to try as well. Any suggestions? I'm taking BioTears brand oil. I did just switch to a hocl lid cleanser for the past two weeks as well. The one called Heyedrate I believe.

[mbperso]

Hi,

If you are MGD + AD, you need to address both but you need to know the level of each one in order to know the progression of relief.

Schirmer test is good to know the level of your AD. I don't understand why your doc doesn't want to do it.
You could do a PRT test , very easy and quick to do.

What is a tear "makeup" test ?

The TBUT helps for the follow-up because it is the combination of MGD + AD, and when treating one root cause you can monitor the progression measuring again the TBUT later.
Then you'll be able to know what is working.

With 25% of lost glands, it is manageable, but others glands have to produce oil.

Probing: does any doctor advice to do probing ?
Did he recommend Heyedrate lid hygiene or it is your choice ?

[Idealist321]

RestoredSparda, I'm curious if you got dry eyes by looking at the total solar eclipse that happened in North America in late August 2017? I have MGD because I looked at the eclipse and it's been negatively affecting my sleep. I don't sleep as deeply and for as many hours as prior to getting dry eyes. Are you experiencing difficulty with rest?

[RestoredSparda]

RestoredSparda, I'm curious if you got dry eyes by looking at the total solar eclipse that happened in North America in late August 2017? I have MGD because I looked at the eclipse and it's been negatively affecting my sleep. I don't sleep as deeply and for as many hours as prior to getting dry eyes. Are you experiencing difficulty with rest?

I actually did look at the eclipse for a little while, although it was behind some pretty hefty cloud cover. I don't have any vision problems or other issues from the eclipse, and didn't have any pain either? Is this something you have proven is the cause of your dry eye? I asked my eye doctor if that could be the cause and he basically laughed at the suggestion. Would care to hear more. If this is a permanent side effect I will hate myself forever for that mistake.....would LOVE to hear more from you on this!

I also don't understand how you could "get" MGD from the eclipse. MGD is from the glands in your eye lids being clogged. I don't see how sunlight could have caused that and it usually takes a while to get bad enough to notice, not an overnight kind of thing. I've also had dry eyes for quite a while in my life before this, but it is crazy bad right now. So dry eye isn't NEW for me, but the level of symptoms is.

Edit: Just to double check, I went into the doctor 2 weeks before the eclipse to complain about dry eye, then again the week after. I actually got BETTER for a month or two after as I had no bad symptoms, then went back to the doctor on October 30 with bad symptoms which haven't gotten better since. That data certainly makes the eclipse not seem like a factor to me. I had this trouble before the Eclipse. Hopefully that make you worry less bout the Eclipse having caused your dry eye as well! Anxiety can play a big role in this thing. =)

[Idealist321]

My optometrist also doubts the eclipse caused my dry eyes. However the difference in my eyes was so drastic the morning after the eclipse. My eyes were very healthy and well-lubricated previously but I had trouble sleeping that night then awoke with my eyes feeling smaller and dry. I didn't have dry eyes before so I believe the eclipse caused it. I looked for less than 10 seconds at a partial eclipse (sun was covered by thick clouds like you witnessed)which was more dangerous than viewing the total eclipse with the naked eye. Also, I read an article stating that an eye doctor had patients who looked at the partial eclipse and all their eyes were healthy yet they all developed dry eyes which they didn't have prior to the eclipse. I even messaged someone on Reddit who also woke up the next morning with extremely dry eyes. There were other Reddit users that shared the same story. Those things confirmed to me that the eclipse caused dry eyes. I just hope scientists give future warning that dry eyes is also a possible side affect.

Has MGD affected your sleep? I havent felt well-rested these last 5 months and it's really been bothering me. Dry eyes is truly depressing to deal with. I regret the risk I took looking at the eclipse everyday.

[Idealist321]

In regards to your questioning of the eclipse causing MGD--If the sun during the eclipse is powerful enough to damage the eyes, I think it could also destroy the glands. You mentioned that a bunch of your glands have died. That may have been caused by the sun. The same way that the sun can dry a wet surface is the same way it can dry the eyes and kill the source of lubrication which are the meibomian glands.

[RestoredSparda]

In regards to your questioning of the eclipse causing MGD--If the sun during the eclipse is powerful enough to damage the eyes, I think it could also destroy the glands. You mentioned that a bunch of your glands have died. That may have been caused by the sun. The same way that the sun can dry a wet surface is the same way it can dry the eyes and kill the source of lubrication which are the meibomian glands.

Glands dying are 100 percent a long-term build up type thing. I've had to quit contacts 8 years ago because my eyes were too dry. I was fine wearing just glasses, but now finally my eyes have given up and are terrible and painful all the time. Glands die over a period of time from being blocked and clogged with bad oil, or from inflammation. From everything I have researched it is not a BAM they are dead type of thing. I have quite a few glands that are not clogged, some are dead, and some are still a bit clogged. Oil is just one part of the equation. You also need lubrication and other things, glands just produce oil to mix with the tears.

Would you mind sharing the article you read with me? I would be curious to learn more about other cases. Although, I don't think worrying about if it was the eclipse that did it or not is going to help with treatments, so I wouldn't get so worked up about it and blame yourself. Treatment for dry eye is all the same so just keep trying things.

I looked or longer than 10 seconds, probably 20 - 40 seconds on and off from looking away and back at it. I have no vision problems whatsoever from this though. Not saying it can't cause dry eyes, but I wonder if this wasn't a long term thing. Like I said, I was already suffering from pretty bad symptoms before the eclipse, enough for me to go to the doctor. Then I had 2 months of good eyes after the eclipse, then my eyes became very bad again. Anyways, unless there is some awesome treatment for specifically dry eyes caused by the sun, I don't think it's helpful to worry about the eclipse anymore than you have to. Just work on getting better, you know?

[RestoredSparda]

I would love to read more from the article you mentioned and the reddit users. I am just as curious as you to find a cure, or a solution and learning about other cases might help. I appreciate your insight on this.

[RestoredSparda]

I'm curious what your symptoms are like. Are they as bad as mine that I've described in my first post? What have you been trying for treatment? Anything working for you?