Recent decent into dry eye hell, still figuring it all out

[edmunder]

Hi Edmunder and welcome!
Just picking up on a one note from your original post


Do you think "menthol sensation" describes this? It's a term we use to describe a constant 'cold and exposed' type of feeling that some dry eye patients get.

Random thoughts

I can't tell you how many people I know that had their first major-major symptom onset in the wake of a topical antibiotic treatment for something going on. In fact spoke with someone in new york today who had this start a year ago with a massive sty - has been dry with light sensitivity ever since.

Contact lens intolerance is not a predictor for PROSE intolerance as far as I know. Sclerals (true sclerals completely vaulting the cornea) are a completely different ballgame. The reason people can't tolerate contacts is related to having an object draped on the cornea. Sclerals don't touch the cornea, they just keep it bathed.

I understand you've had treatment recommendations. But what are you doing to manage symptoms? For a lot of us, that's the crux of the matter. It doesn't necessarily overlap 100% with treatment. For example when symptoms are acute, moisture chamber glasses are your best friend when it comes to getting comfortable again.

Thanks for your reply. I edited the above post, its my hands and feet are ice cold, not my eyes. My eyes feel warm and inflamed most of the time.

I actually pulled out my blood tests from a couple years ago and my Metanephrine levels and Normetanephrine levels were both very, very low. I looked up online what that meant and it appears I have some problem with my adrenal glands not working correctly, which causes this cold body and sweaty issue.

My doctor before never mentioned it! =)

Also my Serotonin levels were very, very low. Wonder if they have some relationship.

I don't think any of this is effecting my dry eyes, though you never know.

[edmunder]

Hi edmunder

welcome. Best is to find a real expert in USA. Some tips would be:

1) take gland images and MMP-9 (to detect level of inflammation) to decide how agressively should be treated, such as LipiFlow, IPL, BlephEx, TrueTear etc.

Im not sure how to upload pictures but the Chinese hospital near me has the Oculus Keratogroph.

I got some very bad news.

Left eye:
NIKBUT Which is tear break up time
First time: 2.68 seconds
Average: 3.45 seconds

Right eye better:
First time: 4.97 seconds
Average: 5.84 seconds

Anything less than 7 seconds was in the very short/very bad range.


The oil in both eyes was to greyish, not clear. I couldn't really understand the doctor sometimes since it was medical Chinese which Im not fluent in, but he said its not flowing well, though he said he didn't see blocked gland openings.


The tear amount was interesting.

NIKTMH --- Tear Meniscus Height

Left eye: 0.17mm
Right eye: 0.16mm

Normal amount is 0.20mm

Now the bad news, I wish I could upload the gland photos. My left eye, the one that hurts, has a lot of gland shortening, though the glands are still there.

On the left side, the glands, many of them, are about half as long as they should be, especially on the top. The bottom is better.

On the right eye the glands have like a 25% loss in length.



So my glands are not working properly but I have some tears. This doctor wasn't great, but I am going back to the USA in a week. I am trying to make an appointment with the Univ of MI center in a couple weeks.


What things should I do to try and save these glands?

I was looking at restasis and it is quite expensive but I will get that on day one. I arrive July 1st. I have an appointment with my ophthalmologist July 2nd in my hometown, I can get it prescribed immediately. (EDIT: I see now that restasis is the staggering $500+ USD a month. Wow, I need to buy stock in Allergen. EDIT 2: Online found that Canadian pharmacies sell this at reasonable prices. I live in MI, so I might actually be able to drive to Canada and stock up, or at least buy online.)


Especially at Dowork123: I had my testosterone checked a year ago and my overall free test was 297. I believe a good number for a 35 year old male who lifts 3-4 times a week and eats healthy is 500-600+. I think this may have something to do with it.


Any thoughts?

Hokucat

MGD1701
diydry
Rebecca Petris
Dowork123
hannsho

[edmunder]

I thought I would talk about what I am doing now for treatment.

Morning:

Wash with warm water.

Use Pranopulin / Pranoprofen eye drops. These are non-steroid anti-inflammatory. I use them about 4-5 times a day.
Next use the Recombinant Bovine Basic Fibroblast Growth Factor Eye-gel. Its a gel so I put it in both eyes. It comes from the fridge so its cold. Then I do about 20 minutes meditating and waiting for it to soak in.

During the day I use a sodium Hyaluronate eye drop. Its made by a german company. Its called Hycosan. I thought it had BAK but I see it is preservative free.

I do Warm compress twice a day.


At night I shower:

After shower

I do the Bovine eye gel

then I put coconut oil in my eyes to sleep.

Usually some Magnesium and some ibuprofen to help me sleep better. Ive been getting 7-8 hours of sleep a night since I started using the eye gel which has really helped heal the eye, it was so rough and painful before, but now its getting a bit better.

[diydry]

That's quite an interesting combination of Eastern and Western treatments... I wish we had access in the US to the Bovine growth factor gel. I'm also not familiar with Pranopulin.

For helping with sleep, definitely look into a sleep mask like Eyeseals 4.0 by Tranquil eye. That was a game changer for me. Now I can sleep even beyond 8 hours for those days when I'm really tired (even though my bad eye feels like sandpaper upon waking). Instead of coconut oil a lot of folks in the US will use a nighttime gel or ointment like Refresh PM. It's a mix of petroleum and mineral oil. Systane PM works well for me. Although maybe coconut oil is cheaper and just as effective though?!

You could also consider some kind of lid scrub like Occusoft after doing the warm compress. I honestly don't think a lid scrub helps me and I've tried multiple products, but some people swear by it, especially if you have anterior blepharitis.

[farmgirl]

I think in order to fill a prescription in Canada you need to see a Dr in Canada to have it prescribed. You could do that once and then get refills for a year but I know that you can't fill a US Rx here.

[edmunder]

I think in order to fill a prescription in Canada you need to see a Dr in Canada to have it prescribed. You could do that once and then get refills for a year but I know that you can't fill a US Rx here.

That's disappointing. Maybe I will swing through Windsor when I go to Ann Arbor Univ of MI eye center, its not far to Detroit and across the bridge. I could make a couple days out of it.

I know its very popular for people to bus over to Canada and load up on RX medicine and then come back. I was hoping I could simply send them my RX and have them send me the medicine.

[Hokucat]

Edmund, regarding your question on how to save your remaining glands, that’ is the million dollar question for many with MGD. It often depends what is the root cause(s) of your MGD, which can be difficult to figure out. And there could be more than one thing causing your problems. Looks like you got some very valuable info on the status of your glands in China, am surprised with their capabilities. You’ are in a good position now to go to U of Michigan to get further tests, diagnosis and help from the Kellogg Eye Center, in conjunction with their medical specialists to help determine if it may be related to hormones, autoimmune disease, vitamin deficiencies, diet, etc.

You mentioned your testosterone is low, and that can definitely cause MGD. Have read in this forum where a guy had testosterone injections which helped the dryness, although too much testosterone can be dangerous and should be monitored regularly via blood tests. Perhaps supplements or foods that help produce more testosterone (google that, there are several listed) can also help with less risk. Recently a woman in this forum found material relief using hormonal supplements.

Do you use electronic devices and/or read a lot? Your blink rate may be decreased, backing up and thickening the oils in your meibomian glands, and causing them to atrophy. This is where treatments like IPL, LipiFlow, etc. can help unblock the glands and melt thick oils, and after expressed, making way for normal oils to to be produced and flow again. Maintenance IPLs and LipiFlows, blinking exercises and taking more breaks from electronic devices can help keep the oils flowing and limit continuing blockage.

There’ have recently been some publications indicating treatments to possibly regrow the glands, but would say the jury is still out on this. However, it does give hope that treatments are actually being researched to address this. Here’ is an article on probing inducing gland re-growth.

https://bjo.bmj.com/content/early/20...ol-2016-310097

[edmunder]

That's quite an interesting combination of Eastern and Western treatments... I wish we had access in the US to the Bovine growth factor gel. I'm also not familiar with Pranopulin.

For helping with sleep, definitely look into a sleep mask like Eyeseals 4.0 by Tranquil eye. That was a game changer for me. Now I can sleep even beyond 8 hours for those days when I'm really tired (even though my bad eye feels like sandpaper upon waking). Instead of coconut oil a lot of folks in the US will use a nighttime gel or ointment like Refresh PM. It's a mix of petroleum and mineral oil. Systane PM works well for me. Although maybe coconut oil is cheaper and just as effective though?!

You could also consider some kind of lid scrub like Occusoft after doing the warm compress. I honestly don't think a lid scrub helps me and I've tried multiple products, but some people swear by it, especially if you have anterior blepharitis.

I purchased a pair of Eyeseals 4.0.

Night time is the bad time for me. During the day things seem Ok, if a bit painful sometimes. Ive been putting on goggles more and it has helped a lot.

So I will have my sleep checked to see if my eyes are open during sleep.

I have had good luck with the coconut oil and its natural which I like. I purchased a small container of organic, high quality coconut oil and castor oil. Will try out both on my return to the USA and also buy some of this Refresh PM if its available. Try to make some comparisons, while also using the Eyeseals 4.0.

I studied American Foreign Policy in university, but it would have been better if I studied science at this rate!

[edmunder]

Edmund, regarding your question on how to save your remaining glands, that’ is the million dollar question for many with MGD. It often depends what is the root cause(s) of your MGD, which can be difficult to figure out. And there could be more than one thing causing your problems. Looks like you got some very valuable info on the status of your glands in China, am surprised with their capabilities. You’ are in a good position now to go to U of Michigan to get further tests, diagnosis and help from the Kellogg Eye Center, in conjunction with their medical specialists to help determine if it may be related to hormones, autoimmune disease, vitamin deficiencies, diet, etc.

You mentioned your testosterone is low, and that can definitely cause MGD. Have read in this forum where a guy had testosterone injections which helped the dryness, although too much testosterone can be dangerous and should be monitored regularly via blood tests. Perhaps supplements or foods that help produce more testosterone (google that, there are several listed) can also help with less risk. Recently a woman in this forum found material relief using hormonal supplements.

Do you use electronic devices and/or read a lot? Your blink rate may be decreased, backing up and thickening the oils in your meibomian glands, and causing them to atrophy. This is where treatments like IPL, LipiFlow, etc. can help unblock the glands and melt thick oils, and after expressed, making way for normal oils to to be produced and flow again. Maintenance IPLs and LipiFlows, blinking exercises and taking more breaks from electronic devices can help keep the oils flowing and limit continuing blockage.

There’ have recently been some publications indicating treatments to possibly regrow the glands, but would say the jury is still out on this. However, it does give hope that treatments are actually being researched to address this. Here’ is an article on probing inducing gland re-growth.

https://bjo.bmj.com/content/early/20...ol-2016-310097

Thank you for the thoughtful and informative reply Hokucat.

I was also surprised with the hospitals Oculus Keratograph, but then I went online in Chinese and started looking at Chinese Dry Eye forums. Tens of thousands of people. Its enormous. I try not to use the computer too much these days, Im actually listening to Infinite Jest on audiobook for my entertainment now which is a very long book, but the Chinese have a serious, serious dry eye problem. The technician doing the dry eye test had a huge stack of people. I waited about an hour. She probably does 20-30 a day, 5 days a week. Dry eye is a global problem.

I will look into testosterone injections once Im back and how to lower my estradiol levels. I saw some of Dowork123's posts and they are very informative. The stupid thing about male hormones is that doctors don't give it to men. Women get hormones at the drop of a hat, but for men almost no matter how low the testosterone levels, men are told to just deal with it. Its a stupid double standard. Ive heard the best place to go are gay/trans doctors who will prescribe testosterone immediately, no questions asked, from my weight lifter friends.

I do use the computer a lot. Actually, my computer use increased a lot this year and I think that is finally the straw that broke the camels back. The less I use the computer, the more I sit and watch the trees in the park, the more I meditate, the better my eyes feel.

Once I have more info from stateside doctors I will share it.

I have been drinking a lot of green tea and lemon together. I steep the tea, a mix of Jasmine, Sencha and Pu'er (Jasmine and Sencha have the highest anti-oxidant levels) and then I pour that into a big glass and fill the rest with fresh squeezed lemon juice. I swear its helping! =) I at least really enjoy the beverage.

I have also read that "Despite all the positive effects described here, green tea catechins actually have very poor bioavailability. There is a way of greatly enhancing it`s effectiveness however. If you consume the green tea in conjunction with omega-3 long chain fatty acids the cells ability to utilize the EGCG will be greatly increased."


https://nccih.nih.gov/research/resul...ght/031610.htm

According to the research, taking fish oil with the green tea increases absorption of the EGCG, which are the antioxidants that help reduce inflammation. So green tea + lemon + fish oil for greater rates of inflammation reduction.

[Hokucat]

Hey, I’ve been taking my fish oil supplements with my lemon/green tea for almost three years now, so I guess I’ve been super charging the absorption of EGCG all this time without realizing it...good to have the scientific research on fish oil increasing absorption, thank you! Here’ is the article from Purdue University on lemon/citrus increasing EGCG absorption, in case you have not seen it in my prior posts:

https://www.purdue.edu/uns/x/2007b/0...rruzziTea.html

Wow, did not realize how serious dry eyes are in China. Heard it is pretty bad in Japan too (that’s why there’s so much research and treatments available there, along with their technology), but also for many Asians in general because of the shape of the eyes, possibly having lesser of an eye lid. I’ am Asian, so I can totally see how that could be an increased risk for incomplete blinks, and/or lids not fully closing while sleeping.

For diagnosing, treating, and monitoring low testosterone, you might also find that a naiuropath M.D. is more open to treatment, as well as looking closer at diet, other supplements, etc. that traditional medical doctors are typically less educated on. I learned a lot from my naturopath.

Ok, have a safe and hopefully comfortable trip back to the U.S. Make sure to bring your moisture chambers, eye drops, and saline to use on the plane. It was always helpful for me to use a thicker drop or gel like Genteal Severe Eye Gel AND wear my moisture chambers during the entire flight, to combat the dry airplane air.

[farmgirl]

Phone a drugstore and ask, I could be wrong...wouldn't be the first time...lol

[Rebecca Petris]

Wow, did not realize how serious dry eyes are in China.

It's huge ... when I met with the TFOS DEWS II epidemiology team a few years back we looked at a lot of big Asian studies (China, Korea, Japan, Thailand if I remember right). Actually the Asians are doing a much better job of researching dry eye incidence in kids and students than we are the the US... yielding some pretty staggering results. But the incidence/prevalence rates of dry eye throughout Asia are pretty scary.

[Guest]

Thank you for the thoughtful and informative reply Hokucat.

I was also surprised with the hospitals Oculus Keratograph, but then I went online in Chinese and started looking at Chinese Dry Eye forums. Tens of thousands of people. Its enormous. I try not to use the computer too much these days, Im actually listening to Infinite Jest on audiobook for my entertainment now which is a very long book, but the Chinese have a serious, serious dry eye problem. The technician doing the dry eye test had a huge stack of people. I waited about an hour. She probably does 20-30 a day, 5 days a week. Dry eye is a global problem.

I will look into testosterone injections once Im back and how to lower my estradiol levels. I saw some of Dowork123's posts and they are very informative. The stupid thing about male hormones is that doctors don't give it to men. Women get hormones at the drop of a hat, but for men almost no matter how low the testosterone levels, men are told to just deal with it. Its a stupid double standard. Ive heard the best place to go are gay/trans doctors who will prescribe testosterone immediately, no questions asked, from my weight lifter friends.

I do use the computer a lot. Actually, my computer use increased a lot this year and I think that is finally the straw that broke the camels back. The less I use the computer, the more I sit and watch the trees in the park, the more I meditate, the better my eyes feel.

Once I have more info from stateside doctors I will share it.

I have been drinking a lot of green tea and lemon together. I steep the tea, a mix of Jasmine, Sencha and Pu'er (Jasmine and Sencha have the highest anti-oxidant levels) and then I pour that into a big glass and fill the rest with fresh squeezed lemon juice. I swear its helping! =) I at least really enjoy the beverage.

I have also read that "Despite all the positive effects described here, green tea catechins actually have very poor bioavailability. There is a way of greatly enhancing it`s effectiveness however. If you consume the green tea in conjunction with omega-3 long chain fatty acids the cells ability to utilize the EGCG will be greatly increased."


https://nccih.nih.gov/research/resul...ght/031610.htm

According to the research, taking fish oil with the green tea increases absorption of the EGCG, which are the antioxidants that help reduce inflammation. So green tea + lemon + fish oil for greater rates of inflammation reduction.

If your bioavailable test is low enough, he should prescribe something, at least a gel. But they don't always do it...sometimes both free and total test have to be low in order to qualify for the script. It's a schedule 3 drug in the United States so that's another reason why doctors are hesitant to give it out. I was honest and found a good docto...I told him straight up, I was a bodybuilder for 16 years, I can't take the gel. He agreed and wrote me 200mg test cyp every two weeks and said we could go up if we had to. I may have to by the way.

Taking exogenous testosterone comes with problems. Once you start, you can't stop...this is a forever thing. Also, you have to then play the balancing act your body does naturally for you. You have to watch estrogen, progesterone, dht, etc. then take other meds to adjust the side effects of the test. If you have a high body fat, you're going to convert estrogen at an even greater rate.

But bottom line, if you're low, I believe you should treat it. Helped my depression and overall mood a lot. Has it done anything for my eyes, I can't say. I'd like to think it has....but in reality I feel once you get to this point, you can manage things, but they'll never work like they used to. I'd like to believe there will be a fix one day. Weather it happens in my lifetime or not is the question.

[deep_dry_eye]

Im not sure how to upload pictures but the Chinese hospital near me has the Oculus Keratogroph.

I got some very bad news.

Left eye:
NIKBUT Which is tear break up time
First time: 2.68 seconds
Average: 3.45 seconds

Right eye better:
First time: 4.97 seconds
Average: 5.84 seconds

Anything less than 7 seconds was in the very short/very bad range.


The oil in both eyes was to greyish, not clear. I couldn't really understand the doctor sometimes since it was medical Chinese which Im not fluent in, but he said its not flowing well, though he said he didn't see blocked gland openings.


The tear amount was interesting.

NIKTMH --- Tear Meniscus Height

Left eye: 0.17mm
Right eye: 0.16mm

Normal amount is 0.20mm

Now the bad news, I wish I could upload the gland photos. My left eye, the one that hurts, has a lot of gland shortening, though the glands are still there.

On the left side, the glands, many of them, are about half as long as they should be, especially on the top. The bottom is better.

On the right eye the glands have like a 25% loss in length.



So my glands are not working properly but I have some tears. This doctor wasn't great, but I am going back to the USA in a week. I am trying to make an appointment with the Univ of MI center in a couple weeks.


What things should I do to try and save these glands?

I was looking at restasis and it is quite expensive but I will get that on day one. I arrive July 1st. I have an appointment with my ophthalmologist July 2nd in my hometown, I can get it prescribed immediately. (EDIT: I see now that restasis is the staggering $500+ USD a month. Wow, I need to buy stock in Allergen. EDIT 2: Online found that Canadian pharmacies sell this at reasonable prices. I live in MI, so I might actually be able to drive to Canada and stock up, or at least buy online.)


Especially at Dowork123: I had my testosterone checked a year ago and my overall free test was 297. I believe a good number for a 35 year old male who lifts 3-4 times a week and eats healthy is 500-600+. I think this may have something to do with it.


Any thoughts?

Hokucat

MGD1701
diydry
Rebecca Petris
Dowork123
hannsho

Just quoting and reiterating this again... Your glands are still there so you have a lot of hope. Don't give up! You can work to save those glands. I'm not a medical dr, but I think you should pursue the aggressive route to save those glands. Once again, get on AzaSite for 1 month. Do Restasis + Xiidra BID. Get on monthly-IPL and do LipiFlow at least once to clear any obstructions.

Don't forget your daily regimen of warm compress, omega-3s (triglyceride) and GLA.

For symptomatic relief and healing your corneal nerves, you can do Prokera and autologous. You can also get sclerals as well. Find yourself a superstar dry eye dr, these are not easy to find, but its critical to your treatment path.

[Bakagan]

thanks for the info! That what i was looking for!