New to Forum...share my experience

[Dryinvancity]

Hi – I am new to the forum and have found it helpful in trying to navigate my way through this condition, I also want to share some of my experience. I am female, 44 years old and in good health (except for this condition). I live in Vancouver, Canada. I wore contact lenses daily for about 20 years and probably did not take the best care of them. I spend (and spent) long hours in front of a computer. The air in my office is VERY dry. My first strong symptoms started in March 2017. Prior to that time I had never used an eye drop nor had I had contact lense discomfort (wore them 16 hours a day). My Optometrist told me I had dry eye and told me to take Omega 3, 4 eye drops a day and do compresses. I only wore contacts if I was going out or perhaps weekends. I was managing the dry eye…was not told of any other conditions.

In August 2018 I started to feel severe inflammation in my left eye. My optometrist told me that it was due to the bad air quality (forest fires) and to continue with my regiment. The inflammation continued for weeks. I went back a month later and she prescribed Xiidra. I did not want to take it because I was traveling to Europe for a month and had read bad reviews on Xiidra. I went to Europe and managed while I was away with minimal symptoms. However, when I returned my eyes FLARED up – inflammation, severe pain, light sensitivity, feeling bone dry...I was a mess. I went on Xiidra. At my one month check up my optometrist took me off the Xiidra. Said I had cell damage, which I did not have before Xiidra. She put me on Restasis. My eyes felt drier on Restatsis. I then saw an optomologist that diagnosed me with Blepharitis. I then saw an optician that diagnosed me with Ocular Rosacea and then another that told me I have MGD…I have too many cooks in the kitchen! Looking at my glands…I definitely have MGD just not sure how bad. I am driest in the evening and night.

Here’s what I have done to date….
· Doxycycline 100 mg/2 x per day for 2 months
· Omega 3 – 3000 mg per day
· Flax seed oil – 6 capsules per day
· Hot compress – 2 to 3 times per day with eyelid massages
· Started blinking exercises as much as possible
· Sleep with an eye mask on…this has been helpful in the winter and not waking up with dry eyes
· Restasis 2x per day (have been on this just over 9 weeks)
· Lotemax 3x per day (did this reluctantly will finish in a few days)

I had Lipiflow done 12 days ago (why I was prescribed lotemax). So far there is some oil coming from my lower glands. However, I can see that some of them still have the toothpaste consistency coming out of some of them. This is disappointing and stressful. I was told that I would be uncomfortable for a few days following Lipiflow…I have had days where there is a menthol, inflamed feeling. Today I feel fine. I have a follow up appointment this week and am happy to report back what the doctor says.

I have an IPL appointment scheduled for this week as well (I want to treat this as aggressively as possible and the toothpaste consistency has convinced me to do this).

My stress and anxiety come from not being able to treat my top eyelids. They are blocked and I want to have them expressed. I have an appointment with Dr. Laura Perriman in March and am also happy to share and report back on that.

I have good and bad days. It’s winter and the air is dry outside. I went for a walk yesterday and paid for it last night…the pain was excruciating.

Sorry for the long post. I want to share my experiences with others and learn from the forum as well.

Thank you!

[Topher3]

The single most important things that helped me with reducing inflammation was FML eye drops, and cold compresses and dry eye shields 24/7. That seemed to kill all of the inflammation, however maybe too late before the damage was done permanently.

[Dryinvancity]

Thanks for the tips!...the constant inflammation is a concern. Many of the optomoglists and opticians I saw said mine was minimal...once the nasty flare up ended Do you have permanent damage from inflammation?

[Guest]

Did doxy help you? Or could you not tell? How long were you on doxy? How hot do you do your compress? Have you tried cold compress like topher suggested?

Dont be be afraid to take steroids. I’d say taking them because if lipiflow is interesting, but you probably needed/need them, at least temporarily. The key is finding the underlying cause. Which is difficult. But you need a correct and solid diagnosis before you can accurately treat the problem. Seems to me your doctors are all confused about what’s going on. To be fair, based on what they prescribed you, xiidra, restasis, lipiflow, these doctors are just throwing stuff at you because it’s all they have available (I assume this because it’s not helping you and it’s very basic treatment). Lipiflow May clear your gland, but if you don’t know why it’s clofged, well it will just clog up again. No one can afford or physically handle lipiflow every month. So I’m just trying to get you to think outside the box, I think you need a dry eye specialist, not an optometrist (an optometrist misdiagnosed me and thought cutting my eye with a razor was a good idea, idiot), not an ophthalmologist, a dry eye specialist. That will be your best bet at finding an answer. No wat I could have figured out my problem without a good doc. This site is amazing, but you need a good doctor.

Good luck!

[Dryinvancity]

Thank you the site has been great and I am gaining a much better understanding of the condition.

I was on doxy 100 mg x2 a day for a month and then 100 mg x1 a day for a month. I was prescribed lotmax for one of my eyes at the same time but I didn’t take since I didn’t think it was that bad...taking it now. I don’t know if it helped...going for a follow up next week. Am going to ask for more doxy.

I believe that rosacea is a culprit here...amongst contacts and computers. I have mild rosacea on my face and have done ipl for it. Going to try it out for my dry eye.

thank you for all the information!

[Meibum Ian]

I believe that rosacea is a culprit here...amongst contacts and computers. I have mild rosacea on my face and have done ipl for it. Going to try it out for my dry eye.

Dd you have any dry eye symptoms before your facial IPL treatment?

[Dryinvancity]

Yes, I did. In fact, it was a dermatologist that asked me shortly after I was diagnosed if I had dry eyes. My rocasea is mild so I didn’t make the correlation or even thought the two could be linked up to that point.

[Guest]

Dryinvancity re: "I then saw an optomologist that diagnosed me with Blepharitis. I then saw an optician that diagnosed me with Ocular Rosacea and then another that told me I have MGD…I have too many cooks in the kitchen!"

Posterior blepharitis means the same thing as MGD. And Ocular rosacea is one of the causes of posterior blepharitis (aka MGD). Mentioning this in case it helps clear up some confusion... sounds to me like the docs agree on the MGD, but are calling it different things. That being said, ocular rosacea is more specific since it hints at the underlying cause... in other words, perhaps dietary changes and other things that help reduce flare ups of rosacea on your skin may also help improve the MGD (aka posterior blepharitis) caused by ocular rosacea.

[Guest]

Thank you...it is all very confusing. This condition is consuming me! I have cut out alcohol as it affects my dry eye...notice it immediately...coffee is next...I’m going to be even more fun to be around.

The most difficult thing is trying to understand how the different treatments are working. I have been advised to put off the ipl I had planned for this week for a few more weeks since I just had Lipiflow. I have not yet benefited from the potential of Lipiflow.

I will post more information about the Lipiflow as the weeks progress. I went into thinking it would be a magic wand but was told the the first few weeks would be uncomfortable...and the have been.

[Dryinvancity]

Thank you...that does provide clarity...it is all very confusing. This condition is consuming me! I have cut out alcohol as it affects my dry eye...coffee is next...I’m going to be even more fun to be around.

The most difficult thing is trying to understand how and if the different treatments are addrsssing the issue. I think it’s still too soon to tell.

I really appreciate all the information from the forum and members...I have learned so much.

[Dryinvancity]

[QUOTE=Dowork123;n222180]Did doxy help you? Or could you not tell? How long were you on doxy? How hot do you do your compress? Have you tried cold compress like topher suggested?



[/QUOTE

I’ve been off doxy for 2 weeks now and have come to realize that it was helping with the inflammation. There are red patches on my face again as of today and inflamed eye balls. I had IPL done and want to continue the course...will have to wait before going back on doxy.

[Dryinvancity]

The single most important things that helped me with reducing inflammation was FML eye drops, and cold compresses and dry eye shields 24/7. That seemed to kill all of the inflammation, however maybe too late before the damage was done permanently.

Hi - when you refer to inflammation is it corneal? That’’s what I have had for months...some days are better than other. How long did it take you to get it under control? Thanks!

[Topher3]

Hi - when you refer to inflammation is it corneal? That’’s what I have had for months...some days are better than other. How long did it take you to get it under control? Thanks!

I think I had inflammation of the sclera very red eyes however the inflammation seems to be gone now and it’s just some red veins are left. After steroids the inflammation was pretty much gone. Cold presses and dry eye glasses have gotten me to a point that I can’treally notice the dry eyes tooooo much. Still need eye drops multiple times a day. If I did the steroids and compressed and dry eyes shields done at one time the inflammation would have subsided in a matter of weeks like 1/2. However I was doing very warm compresses and it was seriously inflaming my eyes. Until 7 months later I discovered cold compresses when I realised my glands aren’t blocked they’re actually just not producing oil.

[Alix]

I think I had inflammation of the sclera very red eyes however the inflammation seems to be gone now and it’s just some red veins are left. After steroids the inflammation was pretty much gone. Cold presses and dry eye glasses have gotten me to a point that I can’treally notice the dry eyes tooooo much. Still need eye drops multiple times a day. If I did the steroids and compressed and dry eyes shields done at one time the inflammation would have subsided in a matter of weeks like 1/2. However I was doing very warm compresses and it was seriously inflaming my eyes. Until 7 months later I discovered cold compresses when I realised my glands aren’t blocked they’re actually just not producing oil.

Hi I think you and I have very similar issues in regards to mgd and inflammation, so I’m really interested how cold compress is helping you because you use Blephasteam as well which I thought would be counter active.

Do you do cold compress every day? If so how long do you leave it before or after using Blephasteam?

[Topher3]

Hi I think you and I have very similar issues in regards to mgd and inflammation, so I’m really interested how cold compress is helping you because you use Blephasteam as well which I thought would be counter active.

Do you do cold compress every day? If so how long do you leave it before or after using Blephasteam?

With the blephasteam it’s a different heat, it’s not putting a heat on my sclera too much, it’s more so concentrated around the eyelids so I think that’s helps. Whereas hot compresses just react differently to me, not good at all. If I’m gonna be honest I rarely use my blephasteam, however I do believe it’s a remarkable device. I don’t have any gland cappings and I think it truly is just a malfunction of my glands not producing enough oil. So heat really is ineffective to me.

Heat really should only be used for those who have capped glands and need to express the oil, and if you don’t have that problem I.e (us with gland loss) then it’s really defeating the purpose. However I do believe it’s good to use occasionally to keep the remaining glands clear and in healthy order.

I do use cold cold presses every day however my version of cold presses is water that I have in the freezer,I get it quite cold and I splash that on my eyes for like 1 minute a couple time a day. It relieves the redness and the more you do it the more the inflammation is bartered down. Really get onto some dry eyes shields they are the single most important thing for anyone with dry eyes it seriously kills the inflammation and redness. Wish I got them a year earlier had I known. I understand you need prescription lenses fitted, keep trying to find someone that can do it don’t give up, it’s imperative to allow your eyes to heal as much as they’re capable of, you can be in a whole different world of comfort if you can give your eyes the chance to heal from the constant evaporation of the aqueous layer.