I(24yr) have severe photophobia and it's even hard to read books. Please help.

[baoro1014]

Hi, I'm a university student in Korea.
I should look at computer everyday because of my major (engineering)
However, about 1.5 years ago, after I concentrated on smartphone games for 1~2hrs. my eyes were aching and I couldn't see monitor any more because of pain.
I feel pain after 5 minutes of watching display.
I also feel very dry (but no pain) when I read books for 5 minutes.
It's hard to stay in a bright fluorescent light classroom. (strange thing is that my eye feels comfortable with very bright sunlight...It's really strange because I feel uncomfortable with flicker free monitor. what's the difference between sunlight and flicker free monitor..?)

Since that day, I have tried many things.
Ocusoft, restasis, diquas, eye plug, scleral lens, steroid eye drop, serum eye drop, hot compress
the only thing made me feel better was scleral lens.
And now because of it, I can see display 1~2 hrs a day with scleral lens.
Every doctor said my eyes don't have a problem.(10 doctors) and I also was tested with confocal microscopy to check corneal neuropathy(Doctor can't find anything abnormal)

However, it's not the end.
My eyes got worse and worse during 1.5 years.
There were some time points that I needed to see monitor a lot. and that made me worse.
At the initiatory stage, I could see computers with goggles and feel comfortable under room light.
Now, I can't see with goggles(I need scleral lens) and my room light makes me dry. I can't study. I can't read books.
I'm afraid I may be get worse in the future when scleral lens also don't work in that time.
So I really want to completely cure my disease before that time comes.
Is there anyone who has similar symptoms or causes with me?
What should I try..?

[Hokucat]

Hi Baoro. I had several years of similar symptoms to what you describe, as well as unsuccessfully trying all the the standard and more complex treatments, so I feel your pain. Many on this forum have experienced something similar as well.

You said all your doctors say nothing is wrong with your eyes? What are your Schirmer and TBUT scores? Do you know whether your meibomian glands are dysfunctional or plugged? Have you had blood tests to check if you have any vitamin deficiency (low potassium, vitamins A, B12,C,D, etc. can cause dry eyes) or autoimmune disease?

Good that sclerals gives you a little relief, but only 1-2 hours is not much. Try wearing your goggles over your sclerals. You are right to be concerned at some point your eyes might get even worse where sclerals won't help. That actually happened to me. Once the sclerals stopped working, I had to quit my job.

However, taking this forced time off helped me focus all my efforts on finding the potential cause of my problem, and trying different treatment and diet changes to address it. It may seem unreasonable for you to take a break from school, but you may want to consider it, as it could help you in the long run find the root cause and how to address it.

During my time off, it was determined my meibomian glands were plugged and generated only very thick oil, likely caused by autoimmune disease. After I had my last meibomian gland probing procedure to unblock my glands (I had several probings prior to this, but glands would always get blocked again), I started drinking fresh squeezed lemon juice with green tea 2x daily, and this was amazingly what my body needed for the oil to flow and now I am so much better. For you it may be something else that works. Now I can wear my sclerals 12+ hours a day and don't use eye drops anymore when not wearing the lenses. But my point is, if I had kept trying to work, not only would I have less time to seek out different treatments and diet, I might not have been able to start noticing the improvement since I was aggravating my eyes driving and using the computer on a daily basis.

I don't know if these will help you wear your sclerals longer, but here's a few tips that have helped mine feel more comfortable in my eyes:
-Put a couple of drops of preservative-free artificial tears in each lens and roll it around inside lens before filling with saline and inserting. I like Tears Naturelle Free (aka Genteal Tears), just use something not too thick.
-While wearing your lenses, lift each upper eyelid and put three drops of artificial tears above the top edge of the lens. Do same under lower lids under bottom of lens edge, then blink a few times. The drops help "fill in" between where the lens edge touches your sclera and gives some extra cushioning.
-While wearing your lenses put several drop of preservative-free saline in your eyes.
-Do blinking exercises every hour. If eyes bone dry, put in drops first. Probably not help if your meibomian glands are blocked.
-Take prescription pill Evoxac (generic cevimeline), which gives moisture to eyes and mouth. Some people say only makes mouth water though, but it works for my eyes too.

When wearing glasses, try using Genteal Severe Gel. This was one of the only drops/gels that soothed my eyes and was long lasting during my severe dry eye days, allowing me to be a little more functional:

https://www.amazon.com/GenTeal-Lubri.../dp/B000URVDQ8

You can get better, as many of us have. But I think taking a break could be key in you feeling better sooner.

[baoro1014]

Hi Baoro. I had several years of similar symptoms to what you describe, as well as unsuccessfully trying all the the standard and more complex treatments, so I feel your pain. Many on this forum have experienced something similar as well.

You said all your doctors say nothing is wrong with your eyes? What are your Schirmer and TBUT scores? Do you know whether your meibomian glands are dysfunctional or plugged? Have you had blood tests to check if you have any vitamin deficiency (low potassium, vitamins A, B12,C,D, etc. can cause dry eyes) or autoimmune disease?

Good that sclerals gives you a little relief, but only 1-2 hours is not much. Try wearing your goggles over your sclerals. You are right to be concerned at some point your eyes might get even worse where sclerals won't help. That actually happened to me. Once the sclerals stopped working, I had to quit my job.

However, taking this forced time off helped me focus all my efforts on finding the potential cause of my problem, and trying different treatment and diet changes to address it. It may seem unreasonable for you to take a break from school, but you may want to consider it, as it could help you in the long run find the root cause and how to address it.

During my time off, it was determined my meibomian glands were plugged and generated only very thick oil, likely caused by autoimmune disease. After I had my last meibomian gland probing procedure to unblock my glands (I had several probings prior to this, but glands would always get blocked again), I started drinking fresh squeezed lemon juice with green tea 2x daily, and this was amazingly what my body needed for the oil to flow and now I am so much better. For you it may be something else that works. Now I can wear my sclerals 12+ hours a day and don't use eye drops anymore when not wearing the lenses. But my point is, if I had kept trying to work, not only would I have less time to seek out different treatments and diet, I might not have been able to start noticing the improvement since I was aggravating my eyes driving and using the computer on a daily basis.

I don't know if these will help you wear your sclerals longer, but here's a few tips that have helped mine feel more comfortable in my eyes:
-Put a couple of drops of preservative-free artificial tears in each lens and roll it around inside lens before filling with saline and inserting. I like Tears Naturelle Free (aka Genteal Tears), just use something not too thick.
-While wearing your lenses, lift each upper eyelid and put three drops of artificial tears above the top edge of the lens. Do same under lower lids under bottom of lens edge, then blink a few times. The drops help "fill in" between where the lens edge touches your sclera and gives some extra cushioning.
-While wearing your lenses put several drop of preservative-free saline in your eyes.
-Do blinking exercises every hour. If eyes bone dry, put in drops first. Probably not help if your meibomian glands are blocked.
-Take prescription pill Evoxac (generic cevimeline), which gives moisture to eyes and mouth. Some people say only makes mouth water though, but it works for my eyes too.

When wearing glasses, try using Genteal Severe Gel. This was one of the only drops/gels that soothed my eyes and was long lasting during my severe dry eye days, allowing me to be a little more functional:

https://www.amazon.com/GenTeal-Lubri.../dp/B000URVDQ8

You can get better, as many of us have. But I think taking a break could be key in you feeling better sooner.

Thank you for all of your advice. I'll try lemon&green tea or Genteal gel.
Actually I did many of things you said above.
My schirmer's test score is changing. If I don't look at smartphone, it's just normal(10mm). However, if I test it after looking at smartphone, it's 3~5mm.
I also did blood test, TBUT, ..etc and I stopped my school for a year.
My question is how did you know your meibomian gland only produce thick oil??
What test did you do???
and how did you know that green tea & lemon is the solution??

[Hokucat]

I'm glad you already stopped school for one year and did blood tests. The break should give you decent time to rest your eyes and find some resolution.

Given your Schirmer score gets worst when using your smart phone, it could indicate you are not blinking enough when looking at devices or studying. In the long run that may cause your meibomian glands to atrophy. Is your TBUT also low?

When my doctors expressed my glands prior to probing them, that's when they could see either no oil coming out (which meant the glands were atrophied or blocked), or a few where very thick Crisco-like oil came out like toothpaste. To express glands, usually they use a special tool to press/squeeze really hard - it's not a fun procedure!

i didn't know beforehand lemon/green tea was the solution for making my oils flow. I had methodically tried many different foods and supplements one at a time, each for two weeks, before determining whether I noticed an improvement in my eyes. It took me almost two years before adding fresh lemon juice (1/6 slice of large Meyer lemon) to very strong green tea (I tap the tea bag against the cup ~100 times). For me my body needed this. It may not work for you, as everyone is different, but certainly worth a try. Note I started the lemon/tea soon after I had my glands expressed and probed, because if the glands are blocked significantly like mine were, likely no diet or treatment will help.

The Genteal gel is supposed to be preservative-free in the eye, but some people have developed an allergic reaction from long term use, so use it sparingly. Sometimes you have to use something like this until you find your ultimate solution, if you have no relief from anything else.

Let me know if you have any other questions. Joining this forum is a great start, there's lots of people who want to help and can share from their experiences.

[MGD1701]

how did you know your meibomian gland only produce thick oil?
Answer: Only doctors know, when he/she press your glands, but most doctors do NOT do that.

[Hokucat]

Yes MGD1701, totally agree most doctors do not press the glands to check the oil. Those who regularly express the glands are often specialists who also do IPL or the meibomian gland probing procedures. The two different specialists I went to for probing each did expression prior to probing, and both had similar comments about my thick oil.

I did have one dry eye specialist who would express a few glands as part of my regular appointment, when I asked him to check the condition of the oils. Sometimes it helps to ask them to, but if they won't, and one knows or suspects MGD is the problem, go to someone who can. There are people I've read who only get the gland expressions, not combined with IPL or probing.

[MGD1701]

..................

[baoro1014]

Thank you. My TBUT is also low.
I visited 10 hospitals but no one pressed my meibomian gland.
Many doctor said it's normal.
One doctor said it's abnormal and make me to do hotpress and squeezing but nothing came out from gland.
How did your doctor pressed your m g? Is it like large-area tweezer?

[MGD1701]

Hi,
suggest you find a real expert to identify problems otherwise your dry eye/ glands will get worsening.
If you can NOT find one, maybe try in Japan or in Singapore??

If no oil comes out, most likely your glands are too clogged or are gone (like me and when they die, they wont come back), or poor oil quality??
Dr can find oil status by pressing glands with 'hands' - you can find some viedos from youtube.

[Hokucat]

Hi baoro. I found the article below that Dr. Toyos, who discovered using IPL to treat MGD, actually did hands-on IPL training for the doctors at Kim Eye Hospital in Seoul, Korea. Even if that's one of the eye hospitals you went to, I think it would be worth your time to contact them and ask if they are doing IPL yet, given you have MGD. If so, make an appointment to see their specialist who does it. If they don't do it yet, ask them where the closest place is that does. It might be Japan, like MGD1701 suggested. Perhaps you could also contact one of the Toyos clinics, in the other link below...they might know where IPL treatment is being used in Korea or Japan. These IPL doctors should certainly have more education and training on the meibomian glands than all those doctors you've seen, and whether IPL or some other treatment can be recommended for your condition. Good luck, sometimes unfortunately us patients end up doing a lot of detective work ourselves to help find answers!

http://www.toyosclinic.com/eye-news/...-disease-seoul

http://www.toyosclinic.com/contact

[baoro1014]

Oh I didn't know about IPL!! really really thank you!
I'll try it in a month and tell you.

[Hokucat]

You're welcome, I hope IPL helps. Just an FYI, my understanding is people usually need several sessions of IPL, not just one.