Bride with Dry Eyes

[JessyBee]

Please Help!

I have extremely severe dry eyes (and have for years, since 22 years old) to the point where it has changed my whole life (like many people here), destroyed friendships, future job prospects, and on and on. I put drops in my eyes 250x per day for a couple of years - my condition has slowly been getting better but I could easily relapse at any point in time.

I am getting married in September. Many people on here, particularly ladies, might possibly feel the same way I do. This condition has really made me struggle so much with my self esteem. I know I should try to like appearance without makeup and with glasses on instead of contacts, but it is really really hard. I haven't worn eye makeup in YEARS and haven't worn contacts for even longer. I really would love to wear both for just a couple of hours for my wedding, but am not sure what to do. I also want to try to ensure I feel comfortable on the day of.

Do you have any suggestions on how you stay confident with the changes dry eye has put you through? Has anyone gotten married while experiencing insurmountable and excruciating pain and discomfort?

Thank you,

A worried Future Mrs.

[Milo007]

Have you considered scleral lenses for managing your wedding and work life?

[chuto]

JessyBee Hi, I had the same concerns in my wedding 15 months ago. I was so stressful to have make up and how to solve glass problem, besides dryness my eyes are full covered with red veins so it is impossible for me to wear contacts anymore.. So I didnt wear my glasses at all in my wedding and wedding ceremony place was soft light ( it was in the evening) so my eye redness was not that prominent even with a soft make up. The biggest problem was to recognise people with my 4 degree myopic eyes but somehow I enjoyed the night. So If you can still wear contacts for just some hours you can give it a chance. But if you have to wear your glasses, dont forget you are the star of your wedding and you will be the most beautiful person there

[farmgirl]

You might use a drop that takes away redness for a period of time. They are pretty much all preserved (I think there is a new one that is not but can't remember the name) but for once or twice it is not probably going to hurt. The other thing I would do is to experiment with makeup so that you know for sure you can tolerate what you are putting on your face/eyes. The last thing I would want is to discover that 2 hours in my eyes are red and burning.

[chuto]

farmgirl I think you refer to Lumify as redness reliever drop.

[JessyBee]

chuto Oh my gosh, I'm sorry to hear this. But I'm happy that it sounds like ultimately you had an amazing day. I plan on having a makeup trial and have been trying to wear mascara for very short time periods to test before the big day (with a couple drops of lavendar oil - supposed to help with eye health).

I'm fortunate that my eyes are not red and veiny.

As for the glasses, I can't be without them unfortunately due to terrible eye sight.

Milo007, I tried to get scleral lenses at Boston Foundation for Sight, and they said I was not a good candidate (very long, frustrating story - I've had my other docs say they aren't sure why they made that call and that, considering my condition and history, I'd be a perfect candidate).

[Milo007]

Milo007, I tried to get scleral lenses at Boston Foundation for Sight, and they said I was not a good candidate (very long, frustrating story - I've had my other docs say they aren't sure why they made that call and that, considering my condition and history, I'd be a perfect candidate).

Perhaps you should have asked them the reason of their call.

Just wondering is it because sclerals are not useful for MGD?

[deep_dry_eye]

Unfortunately, the Boston Foundation have very limited resources and many patients in need. Have you tried other sclerals first? They would be more receptive if you tried other sclerals, and they don't fit/work then they might accept you. Boston usually deals with the most extreme cases that other clinics can not deal with.

[JessyBee]

Milo007 and deep_dry_eye , they said that the sclerals supposedly won't help my "type" of dry eye - I've received several inconsistent diagnoses - I've heard MGD, ocular rosacea, blepharitis, legopthalmous, nerve damage, no nerve damage (from the same doc several years apart from each other after looking at the same images - I'm sure he didn't read that deep in my file the second time around), hormone imbalances . . . basically no one seems to really know.

I've had meibomian gland probing done in Boston and it did squat didly, and compresses did truly nothing so I'm thinking it's not MGD. Many times docs would bring up my skin (I struggled with adult acne for quite a while) and blame my skin for my eye condition. I've since cleared up my skin (people have made comments and asking what I've been doing) since going on the Autoimmune Protocol diet which also seems to be helping my eyes, so who really knows. I think it's worth a try to just let me try the sclerals but what do I know. Several years after developing dry eye, one day out of the blue I developed a very dry mouth and it's been dry since. I think there's also an acqacious deficiency.

[Alix]

Milo007 and deep_dry_eye , they said that the sclerals supposedly won't help my "type" of dry eye - I've received several inconsistent diagnoses - I've heard MGD, ocular rosacea, blepharitis, legopthalmous, nerve damage, no nerve damage (from the same doc several years apart from each other after looking at the same images - I'm sure he didn't read that deep in my file the second time around), hormone imbalances . . . basically no one seems to really know.

I've had meibomian gland probing done in Boston and it did squat didly, and compresses did truly nothing so I'm thinking it's not MGD. Many times docs would bring up my skin (I struggled with adult acne for quite a while) and blame my skin for my eye condition. I've since cleared up my skin (people have made comments and asking what I've been doing) since going on the Autoimmune Protocol diet which also seems to be helping my eyes, so who really knows. I think it's worth a try to just let me try the sclerals but what do I know. Several years after developing dry eye, one day out of the blue I developed a very dry mouth and it's been dry since. I think there's also an acqacious deficiency.

Hey there have you been tested for Sjogrens?

[Hokucat]

If you also have dry mouth, like Alix recommends, you should get tested for Sjogren’s Syndrome if you have not already. I have both MGD and aqueous deficiency, slightly dry mouth, and used to have several other Sjogren’s symptoms like dry skin, etc. I have been negative for Sjogren’s for several years, however doctors are 99% certain I have it because I have those hallmark symptoms. Often one does not test positive for many years. If from a detailed check by a rheumatologist you do test positive for Sjogren’s or an evaluation of your symptoms indicate you likely have it, this could better target a treatment plan for the underlying condition.

Did Boston at least let you try on their PROSE scleral lenses to see how they feel on? I have PROSE sclerals and they have worked very well for my condition for several years. PROSE fitters usually have excellent expertise in fitting sclerals and for the various conditions it can treat, so would guess there was good reason they said you were not a candidate. But usually they let you try on the lenses to see if it helps before saying whether or not you are a candidate.

Are you using anything to protect your eyes at night while sleeping? You mentioned one of your diagnosis is your eyes might be slightly open while sleeping (nocturnal lagophthalmos), exposing your eyes to air that a compromised tear film cannot protect. Wearing something like EyeSeals 4.0 goggles at night could help, it seals the air out very well. For me using night ointments and other night goggles did not help like Eyeseals do. Some have found bubble bandages or taping their eyes at night works better for them, especially if they have a tendency to remove the goggles or move around a lot in their sleep. The Dry Eye Shop has these night products and more:

https://dryeyeshop.com/collections/nights

[JessyBee]

Hokucat Alix , yes I've been tested for Sjogrens, RA, Lupus, and general autoimmune diseases, and tested negative for all of them. Regardless of the tests, I still think I have Sjogrens. BFS said I'm not a candidate because I have MGD and Blepharitis. They did let me try them on for about 30 minutes but still said I'm not a candidate. I have not tried other Sclerals because they are not available where I live - though one of the docs I see said she is working on getting them for patients within the next year. She said that she would definitely fit me for them and that I'd be a good candidate.

I've tried eye goggles in the past and hated them (I purchased through DryEyeShop) and they had vents in them???? Rediculous. Anyway, I may try those goggles. Right now for night time I do a coconut oil wash and smother my eyes in the coconut oil (virgin, unrefined, cold pressed always). I then put tea tree oil on my lids and a tiny tiny bit carefully on my lash line. And I use Xidra drops as my "night time gel" because it's the best thing I've used for night time (though seems useless otherwise). I also wear an eye mask, though not goggles. I used to use tranquileyes at night and it didn't do anything. I also used goggles, the name escapes me, but it had vents so I don't know what the point of them was (they were made for dry eyes). Sometimes I'll take a hot, wet wash cloth and sleep with it wedged under my mask. That seems to help (and is way more comfortable and way cheaper than tranquileyes).

Thank you Hokucat, I'll check out the Eyeseals if you think they really help.

[JessyBee]

Also Hokucat, I've had one doctor many years ago tell me I had legopthalmus, and all other doctors have said that I do not. I've never received a consistent diagnosis so unfortunately I can't be 100% sure of what's wrong with me, other than that I'm certain it's at least partially genetic since both my mom and sister have some major issues as well.

[Hokucat]

I used TranquilEyes goggles for years and it helped a little, but not as much as the EyeSeals. Perhaps try the EyeSeals, along with continuing your current coconut oil/tea tree/Xiidra regimen.

Many people including myself have MGD and blepharatis and have been able to wear sclerals, including PROSE sclerals, so that puzzles me that’s the reason you were not a candidate. When you tried on the PROSE for 30 minutes, did your eyes feel better with them on? If so, was your fitter aware of that?

I don’t know if you are familiar with EyePrintPro sclerals where they take a mold of your eyeball to make the sclerals the exact shape of your eyeball, which limits the guesswork in what can often be a lengthy fitting process for other sclerals? My good friend has EPP, and it did still take two fittings but she’s very happy with her lens. Rebecca also has EPP. In addition to Boston’s PROSE, EPP has also become one of the top scleral fitters. I don’t know where you live, but there are many locations in United States and now some in other countries. You can read more about EPP sclerals and see if there’s a fitter near you on their website:

https://www.eyeprintpro.com/patient/

My condition is likely at least partially genetic as well, and probably was worsened by excessive use of computers at work which impacted my blink rate and partial blinking.