Desperate for tips / help to painful / burning eyes!

[Joajohan]

Hello!

I share my eye problem here in the hope that somebody has tips for what I should try or where in the world I should travel for help.

The symptoms began so little four years ago and are now so bad that living a normal life is difficult.

Here's my story:
Waking up in the morning with light pink eyes, after a few seconds of eye use, eg on the mobile / TV watching in when I wake up, the eyes become significantly more red, especially left. If the eyes tear in the morning due to the light from the screen, there is a sting in the left eye and they become even redder. After a shower in the morning they are reddish, especially the left. This occurs even if the eyes are closed throughout the shower.

If I close my eyes for an hour after this, they become more white and normal again, especially with the help of cortisone steroid drops (Monopex)

I use mini sclera lens on my left eye through the day as this helps a little on sore / burning sensation. In what I put on this lens, the eye turns red again, but fades after an hour or two. If I use cortisone steroid drops on this lens, the eye slowly becomes somewhat paler. There are always visible blood vessels in both eyes.

As soon as I use my eyes actively throughout the day, such as driving, watching screens or other activity, the painfull / burning sensation increases and the eye turns red. Cortisone steroid drops relieve some of this. The only thing that really helps is to close the eyes, then the pain disappears right away and the eye fades after an hour with eyes closed.

Several times during the day, the burning / painfull sensation in the eyes, especially left so strong that I have to close my eyes.

The plagues are now so big that driving a car or working unfortunately do not work because of the pain this causes.

I have been at a countless number of ophthalmologists without anyone helping me.

Outside of redness, the eyes look healthy with the use of a sitlamp.

Dry eyes are excluded.

Confocal microscopy also shows normal results.

Does anyone know what this may be or have tips for things that can make everyday life better?

Desperate for tips they can make everyday life better!

Thank you in advance!

[edmunder]

Im sorry to hear you are in pain. Lots of pain on this forum. Im in terrible pain most days myself.

Have you had a meibography where a doctor takes a picture if your meibomian glands?

Thats usually at a good dry eye doctors office. They use Lipiview Or Oculus.

Im actually thinking of trying sclerals and it scares me that they dont bring you much relief from dry eye. Thats the readon id like to try them.

[MGD1701]

Confocal microscopy
Great you have done this, lucky you. Just curious if doctors examined
demodex, allergy/IgE tests, lid sealed?

What other tests have you done, MMP-9, osmolartiy to cross check the data, if also normal then pretty strange.

Water/shower, when you close eyes too tight, water, dirts could go into eyes. In some countries, water is not so clean.

If Cortisone steroid drops help, it likely suggests allergy/inflammation but you said the confocal is normal???
Confocal can pick up much info on inflammation, corneal nerve and the gland status.

[Milo007]

Hello!

I share my eye problem here in the hope that somebody has tips for what I should try or where in the world I should travel for help.

The symptoms began so little four years ago and are now so bad that living a normal life is difficult.

Here's my story:
Waking up in the morning with light pink eyes, after a few seconds of eye use, eg on the mobile / TV watching in when I wake up, the eyes become significantly more red, especially left. If the eyes tear in the morning due to the light from the screen, there is a sting in the left eye and they become even redder. After a shower in the morning they are reddish, especially the left. This occurs even if the eyes are closed throughout the shower.

If I close my eyes for an hour after this, they become more white and normal again, especially with the help of cortisone steroid drops (Monopex)

I use mini sclera lens on my left eye through the day as this helps a little on sore / burning sensation. In what I put on this lens, the eye turns red again, but fades after an hour or two. If I use cortisone steroid drops on this lens, the eye slowly becomes somewhat paler. There are always visible blood vessels in both eyes.

As soon as I use my eyes actively throughout the day, such as driving, watching screens or other activity, the painfull / burning sensation increases and the eye turns red. Cortisone steroid drops relieve some of this. The only thing that really helps is to close the eyes, then the pain disappears right away and the eye fades after an hour with eyes closed.

Several times during the day, the burning / painfull sensation in the eyes, especially left so strong that I have to close my eyes.

The plagues are now so big that driving a car or working unfortunately do not work because of the pain this causes.

I have been at a countless number of ophthalmologists without anyone helping me.

Outside of redness, the eyes look healthy with the use of a sitlamp.

Dry eyes are excluded.

Confocal microscopy also shows normal results.

Does anyone know what this may be or have tips for things that can make everyday life better?

Desperate for tips they can make everyday life better!

Thank you in advance!

It's amazing how much dry eyes can affect your life practically.

For me, it's been really a surprise I didn't see coming. I see more and more patients in their 20s with dry eyes or even younger patients!

It's hard to imagine the future, if our condition is so pathetic at just 20s. I am getting panicky each passing day. I can definitely sympathesize your condition. All I can say is pray for the best and try to look for ways of immediate relief other than steroids. You may use a lubricating eye ointment all day and night instead. But please use steroids as less as possible.

I hope some revolutionary treatment may arrive soon that can restore these precious glands in their working condition. I really pray for this each day.

God bless you.

[diydry]

I'm sorry to hear about your pain. I understand how frustrating that can be. It sounds like you are using steroid drops a LOT. Some steroid drops are not safe for long-term use. Did your doctor say it was OK to use them this often? I worry about side effects from the steroids that could be making things worse for you. Have you tried any moisture chamber glasses which might help with burning sensation when watching TV?

[Rebecca Petris]

Hi and welcome.

Can I ask, which problem is the highest priority for you to solve: pain, or redness?

I use mini sclera lens on my left eye through the day as this helps a little on sore / burning sensation.

What diameter lens? Do you have the option to get a larger lens? Personally my eyes will not tolerate a mini scleral at all. I have to have a big vault over the cornea and limbus.

What are you filling the lens with?

In what I put on this lens, the eye turns red again, but fades after an hour or two. If I use cortisone steroid drops on this lens, the eye slowly becomes somewhat paler.

You're using a steroid drop over the lens? Is your doctor OK with this?

As soon as I use my eyes actively throughout the day, such as driving, watching screens or other activity, the painfull / burning sensation increases and the eye turns red. Cortisone steroid drops relieve some of this. The only thing that really helps is to close the eyes, then the pain disappears right away and the eye fades after an hour with eyes closed.

Have you tried moisture chamber glasses or goggles of some kind at home? I'm not suggesting it's the long term solution but you need a non steroid way to relieve symptoms.

Dry eyes are excluded.

On what basis - do you have specific test results? Schirmer, TBUT, staining, etc?

I think of cold moist compresses and moisture chamber goggles/glasses as the best short term relief for this. Very sorry for what you're going through!

[Guest]

I’m going to tell you that I sleep with my eyes open. This has caused me so many issues. When you say, I wake up with pink eyes and they get worse when I use the computer, that makes me think they were stressed out during the night. When you say, if I nap or close my eyes, the redness and everything gets better. Just makes me think maybe you’re sleeping eyes open.

Are you a stomach and side sleeper? Do you sleep on your left side the most? I sleep on my side, mostly my left side and I bury my face into the pillow. That forces my lids open when I sleep and the eye dries out.

I agree with a lot of the other posters. Being in steroids long term is dangerous. I hope you’re getting your pressure checked regularly...although I’m not sure what’s worse, the steroid or the preservative. I think you can find the root cause and fix this. I’m sorry you’re feeling so bad, dry eye is a tough road, but you’ll be ok.

[Joajohan]

Thank you so much guys, I realy appriciate your time!
I am sorry to hear that there are so many suffering with this pain.

Have you had a meibography where a doctor takes a picture if your meibomian glands?

Thats usually at a good dry eye doctors office. They use Lipiview Or Oculus.

Im actually thinking of trying sclerals and it scares me that they dont bring you much relief from dry eye. Thats the readon id like to try them.

Yes, I have been several times at "The Dry Eye Clinic" here I Europe, they are really good at what they do and they say that dry eye is not the problem, they also did the pictures of meimbomian glands. The right eye has a bit poor tear film quality, but the left is just fine and the pain I feel is from the left eye.
The mini Sclera has helped me some trough the day, so I want to try a bigger lens or PROSE.
Hope this will work for you.

Confocal microscopy
Great you have done this, lucky you. Just curious if doctors examined
demodex, allergy/IgE tests, lid sealed?

What other tests have you done, MMP-9, osmolartiy to cross check the data, if also normal then pretty strange.

Water/shower, when you close eyes too tight, water, dirts could go into eyes. In some countries, water is not so clean.

If Cortisone steroid drops help, it likely suggests allergy/inflammation but you said the confocal is normal???
Confocal can pick up much info on inflammation, corneal nerve and the gland status.

There is no signs of demodex, just to be sure I use a demodex cure, but with same result.
I've been tested for allergies with a blood test, turns out I am allergic to cat, dog, birch and mite.
Is there any other allergy test I should try?

I live in Norway and the water quality is quite good, but my eyes are oversensitive.

I`ve beed at two different confocal, but everything showed normal results.

I'm sorry to hear about your pain. I understand how frustrating that can be. It sounds like you are using steroid drops a LOT. Some steroid drops are not safe for long-term use. Did your doctor say it was OK to use them this often? I worry about side effects from the steroids that could be making things worse for you. Have you tried any moisture chamber glasses which might help with burning sensation when watching TV?

Yes, I use them way to often, but I really need a relief from this. I measure the eye pressure once a month and it is a normal level even though I use the cortisone.
Ive used cortisone for over two years now.

Hi and thank you Rebecca!

Can I ask, which problem is the highest priority for you to solve: pain, or redness?

I clearly believe that there is a connection between pain and redness, so if one manages to solve one should the other also be better?

What diameter lens? Do you have the option to get a larger lens? Personally my eyes will not tolerate a mini scleral at all. I have to have a big vault over the cornea and limbus.

My lens is 15,2 just covering the cornea, I will try to get a bigger lens here in Norway. I am also traveling to LA in October and I see that USC fits PROSE in LA, do you think I should try this? I do not have an insurance but I will take this cost if it could help.

What are you filling the lens with?

Sailine, nothin else. Do you have another recommendations?

You're using a steroid drop over the lens? Is your doctor OK with this?

I told him this, and he did not tell ne not to do this.

Have you tried moisture chamber glasses or goggles of some kind at home? I'm not suggesting it's the long term solution but you need a non steroid way to relieve symptoms.

Yes, I have tried blephsteam googles, but they are unfortunately not helping. If I my rinse face with water etc, the pain goes away for a little while.

On what basis - do you have specific test results? Schirmer, TBUT, staining, etc?

Yes, I have been several times at "The Dry Eye Clinic" here I Europe, they are really good at what they do and they say that dry eye is not the problem. They have done all kinds of tests. The right eye has a bit poor tear film quality, but the left is just fine and the pain I feel is from the left eye.

I’m going to tell you that I sleep with my eyes open. This has caused me so many issues. When you say, I wake up with pink eyes and they get worse when I use the computer, that makes me think they were stressed out during the night. When you say, if I nap or close my eyes, the redness and everything gets better. Just makes me think maybe you’re sleeping eyes open.

Are you a stomach and side sleeper? Do you sleep on your left side the most? I sleep on my side, mostly my left side and I bury my face into the pillow. That forces my lids open when I sleep and the eye dries out.

I agree with a lot of the other posters. Being in steroids long term is dangerous. I hope you’re getting your pressure checked regularly...although I’m not sure what’s worse, the steroid or the preservative. I think you can find the root cause and fix this. I’m sorry you’re feeling so bad, dry eye is a tough road, but you’ll be ok.

Thank you for your tips Dowork123.
I know I Have mye eyes closed when I sleep, but I have not thought about how I sleep.
I haven't thought about how I sleep but I will definitely do this now. Seems like mye eyes gets overstressed by nothing.

[MGD1701]

cortisone
how much%, how often per day, brand name, do you use then stop some weeks/months or non-stopped for 2 years?
If stop then resume, HOW LONG the break should be?

Allergy
There is IgE (blood) test and more but still not easy to detect all. The best is avoid things you are allergy to and be your own detective too. Maybe visit a specialist on allergy?? Well-around moisture chamber glasses (not Blephasteam) helps. Dry eye shop here in the forum sells them- or contact producers. I am surprised if none of doctors recomended you these basic stuff.

Lids sealed
your lids might be closed but NOT sealed. Dr Korb mentioned this often in his videos/youTube, 2016 (I posted here in the forum arleady), 2014, 2012.

TrueTear
should help with pain, according to many doctors in USA. It should be available in Europe soon. The producer is applying approval now.

[Joajohan]

cortisone
how much%, how often per day, brand name, do you use then stop some weeks/months or non-stopped for 2 years?
If stop then resume, HOW LONG the break should be?

Allergy
There is IgE (blood) test and more but still not easy to detect all. The best is avoid things you are allergy to and be your own detective too. Maybe visit a specialist on allergy?? Well-around moisture chamber glasses (not Blephasteam) helps. Dry eye shop here in the forum sells them- or contact producers. I am surprised if none of doctors recomended you these basic stuff.

Lids sealed
your lids might be closed but NOT sealed. Dr Korb mentioned this often in his videos/youTube, 2016 (I posted here in the forum arleady), 2014, 2012.

TrueTear
should help with pain, according to many doctors in USA. It should be available in Europe soon. The producer is applying approval now.

I use Monopex from Thea Nordic, IT says 1mg/Ml om the box. More or less non-stop for 2 years. If I use my eyes a lot maybe 3-4 times a day.

thank you for the heads-up on moisture chamber!

Allergy might be a thing, but tried pills and most allergy drops without good results.

If there where a diagnose IT would be a lot easyer.

[Rebecca Petris]

Joajohan The saline you are filling the lenses with, is it just 0.9% sodium chloride (i.e. water & sodium chloride, nothing else)? That's acidic, for some people they're more comfortable if they add some preservative free artificial tears.

15.2 is pretty small. Larger more likely to help with pain & redness issues I'm thinking. PROSE is amazing and Gloria Chiu who does them at USC is great, but sounds like a not 100% clear situation so hard to know.

Love Dowork's suggestion about overnight exposure potentially being part of this, that is a frequently overlooked problem. Pinkness in the morning's an important clue I would imagine.

[Joajohan]

Joajohan The saline you are filling the lenses with, is it just 0.9% sodium chloride (i.e. water & sodium chloride, nothing else)? That's acidic, for some people they're more comfortable if they add some preservative free artificial tears.

15.2 is pretty small. Larger more likely to help with pain & redness issues I'm thinking. PROSE is amazing and Gloria Chiu who does them at USC is great, but sounds like a not 100% clear situation so hard to know.

Love Dowork's suggestion about overnight exposure potentially being part of this, that is a frequently overlooked problem. Pinkness in the morning's an important clue I would imagine.

Thank you again Rebecca.

Do you recomend a 50/50 sailine and preservative free artificial tears?

Do you noe how I can get in touch with Gloria Chiu?
I really want to book an apointment with her when I am traveling to LA.
I have tried the contact form at USC Roski Eye Institute site, but no response.

[MGD1701]

Hi Joajohan

Prof./Dr.Gloria Chiu is at USC Roski Eye Insitute, here is a video about her
- how Scleral Lens/ Prose helped this patient with constant pain, red eyes. (I was just curious about this clinic)

title: A Bad Antibiotic Reaction Impairing His Sight Leads One Man to USC and Innovative Treatment

After a severe reaction to an antibiotic, Jeremy Falk found himself covered in blisters and pain that also impacted his ability to open his eyes, be outside in daylight and even create tears. Referred to Dr. Gloria Chiu at the USC Roski Eye Institute, Jeremy was diagnosed with Stevens Johnson Syndrome and prescribed PROSE treatment.

As one of only two ophthalmic clinics in California and one of only a dozen nationwide to offer PROSE treatment, USC Roski Eye Institute experts helped Jeremy regain his ability to see without dark glasses, get back to work and regain his quality of life. Watch his compelling story and learn more about PROSE at: USCEye.org

https://www.youtube.com/watch?v=e2tUYsUxwWY

[diydry]

It might not be cheap, but I would just make an international call to USC Roski. They should be able to set you up with an appointment with Dr. Chiu for October. They do fill up fast so I would call soon. I got my scleral lens from Dr. Chiu and she is great, although she did not recommend PROSE for me, mine is a bit smaller but still larger than a mini-scleral I believe (although I might try or a larger diameter lens for my next lens). I believe the provider at UCLA is also great and does PROSE as well.

[Joajohan]

Thanks again!
I feel that i just have to try out PROSE, even if it costs a lot.

I guess I have to try calling, as you can see from my wrighting the language is not my strongest side.
it would be easyer for me with a written conversation.