OSDI 78 -> 25 in about a year: what worked and what didn't

[leno89]

I am after 4 IPL sessions, my doctor dont want do more IPL, I think he is wrong. I am a truck driver and studying IT, I don't know what to do anymore. How to live, how to enjoy what I do (work), where can I work with a dry eye.

[anteloper]

Were you able to get back to how your eyes normally were before symptoms?

Thanks for the reply!

To your first question-- no-- I am not back to where I was before I got dry eye, and I don't think I'll ever get there. I will probably have this for the rest of my life, and I've changed my mental outlook on life in order to accept that. My dry eye only gets worse if I don't treat it, and I still get IPL every 4-8 weeks to maintain my current level of symptoms. I'm okay with it now but I'm prepared mentally for things to get worse again one day.

Since you were able to reduce symptoms in a year, I was wondering if a year of symptoms were enough to cause permanent damage to your eyes?

It sounds like you're saying that if my symptoms went away completely that would be proof there was no permanent damage. (Is that correct?)

I disagree with this. The connection between symptoms and underlying damage is not that close. Dry eye can get worse symptomatically without increased damage, and damage can also happen without symptoms getting worse. The medical literature says that the cornea first responds to a thin tear film by becoming *less* sensitive. In other words, dry eye damage can start without symptoms, before someone realizes what's going on, and then suddenly the symptoms appear once they hit a threshold.

Using eye drops, lifestyle, climate (how humid is it where you live?) all impact symptoms but may not affect the underlying disease.

I think it is important to think about symptoms and the underlying disease separately. I would have terrible anxiety if I thought my disease was getting worse every time my symptoms flared up. However, it is important to stop and think about your symptoms rationally when you are in a good mood, because they may be giving useful info about how to manage your disease. (I find it helpful to set aside specific time(s) every week to journal about my dry eye, and I track my symptoms in a spreadsheet every day-- just a quick 1-10 score for each eye.) The goal is to treat the disease, not the symptoms-- this is why I never used eye drops more than 1-2x a month, though that is not realistic for people with more severe cases.

I got dry eyes 8 years ago but symptoms went away after 2 years. But they recently came back 4 months ago because of excessive computer use from work. I did a scan of my glands recently and it seemed like most of my glands on the left eye has truncated (unsure if my glands were always like this or if it just recently happened). I'm worried of having permanently damaged my glands in the past 4 months but my docs keep telling me it takes years for meibomian glands to atrophy. I'm hoping I can get back to the point I was at 4 months ago.

I understand this is difficult to hear, but it's definitely possible that in the 6 years between when your symptoms went away and came back, that some or all of the apparent gland atrophy happened then, even though you did not have noticeable symptoms. This was difficult for me too, because my dry eye suddenly got bad when it started. I have some gland loss which definitely happened before my symptoms started.

That said, we need to be more clear about what we mean by "permanent damage". Dry eye affects lots of things: the cornea surface, the meibomian glands, the lid margin microbiome, the skin of the eyelids, and our nervous systems, including sensory (pain) and muscle (blinking, blepharospasm) nerves in and around the eyes, and our mental health. All of these things contribute to symptoms, but it's really only the glands where damage is "permanent". There is no evidence that truncated glands can grow back (mine haven't), but good treatment/management (IPL, blinking exercises, diet, etc.) can help the glands you have left to work better.

When I first got diagnosed, I really wanted to get back to "healthy", like I thought I was before the diagnosis. Making comparisons to my past self made me depressed. I really understand how difficult it is, but my life got better after I accepted that this is just how things are now, and just tried to focus on managing the disease in the present moment. No one knows if your symptoms can get back to how they were 4 months ago, but most likely your symptoms can improve with good care.

[romeodakins]

Were you able to get back to how your eyes normally were before symptoms? I got dry eyes 8 years ago but symptoms went away after 2 years. But they recently came back 4 months ago because of excessive computer use from work. I did a scan of my glands recently and it seemed like most of my glands on the left eye has truncated (unsure if my glands were always like this or if it just recently happened). I'm worried of having permanently damaged my glands in the past 4 months but my docs keep telling me it takes years for meibomian glands to atrophy. I'm hoping I can get back to the point I was at 4 months ago. Since you were able to reduce symptoms in a year, I was wondering if a year of symptoms were enough to cause permanent damage to your eyes?

[anteloper]

I thought warm compress improves oil production/quality?

They can-- it depends on the person. My understanding is that they help by melting coagulated meibum which helps keep a good flow of oil moving out of the glands. I'm doubtful that the heat itself affects the quantity of oil production but I think that's unknown. But heat increases blood flow which can cause or exacerbate inflammation (and sometimes growth of new blood vessels), and inflammation destabilizes the meibum-- making it alternately too runny or too thick, which can lead to clogging again, and or symptoms immediately after doing the compress. This isn't an issue for some people, but it is for me. I have heard of people doing cold compresses right after warm compresses-- to calm down the blood flow / inflammation after trying to melt the coagulated meibum.

When I did warm compresses consistently for months after my diagnosis they did reduce clogging in my glands and help the meibum flow better; I did see improvement in my symptoms, but they also caused or exacerbated my ocular rosacea. I can't say for sure since I wasn't evaluated or diagnosed for ocular rosacea until later.

I was a prior accutane user which i'm almost 100% sure was what jacked up my meibomian glands-- thank God there is oil coming out just poor quality. Thanks for your tips regarding inflammation. I've changed my diet quite drastically over the past few months and it seems to have helped. Thanks for all the tips-- i'm so glad you're doing better!

Glad to hear that! Yeah diet is a big deal. I still have significant symptoms but I am doing so much better than before.

[wenmyster]

When I've had poor quality oil that's typically been due to increased blood flow from doing a warm compress, or eating inflammatory food(s).

I thought warm compress improves oil production/quality?

I was a prior accutane user which i'm almost 100% sure was what jacked up my meibomian glands-- thank God there is oil coming out just poor quality. Thanks for your tips regarding inflammation. I've changed my diet quite drastically over the past few months and it seems to have helped. Thanks for all the tips-- i'm so glad you're doing better!

[anteloper]

Wow thank you so much for posting this

Thank you for reading and for letting me know! It means a lot to me.

Question: you said that most of your meibomian glands are intact. Did any of the doctors you saw manually express them and say the quality of oil you were producing? Apparently, I have a lot of oil coming out but they come out poor quality like crisco. I'm wondering what kind of treatments maybe even the ones you've tried that might improve the quality of oil that I'm producing?

Yes. I am lucky because my glands are mostly intact however I do have some gland loss, gland shortening, and gland "tortuosity" (twisted/wrapped/misshapen glands) and one of my docs said that the openings of my glands were more "open", maybe they're permanently stretched out from being badly clogged.

All of my docs have done manual expression to see oil quality. I've had a range of outcomes-- sometimes they are clogged and (almost) nothing comes out, sometimes there is a lot of poor quality oil, and sometimes (more recently) it's looked relatively healthy.

Oil quality is (obviously) affected by a lot of things:
- Inflammation in the lid area
- Lid area bacterial environment
- Gland health/quantity
- Lid area skin health
- Demodex infestation
- Diet
- Stress/sleep
etc.

When I've had poor quality oil that's typically been due to increased blood flow from doing a warm compress, or eating inflammatory food(s).

If your glands are mostly working and expressing oil (but it's low quality oil) I would focus on possible sources of inflammation.

I really don't know how well IPL works on normal MGD with "inflammation" without ocular rosacea. All I can say is IPL worked really well on my ocular rosacea and after treating my ocular rosacea my inflammation decreased. If there is underlying recurring inflammation due to stress/bad sleep/diet/allergies IPL cannot treat that and will not work as well, the treatment is to attack the source of whatever is causing the inflammation.

If you've ever had acne I recommend the book The Clear Skin diet, it's basically an anti-inflammatory diet for your skin which will of course help your eyelids as well. Also, the basic stuff: make sure you're drinking enough water and taking enough fish oil. I noticed an improvement when I went from 1 to 2 fish oil pills per day (1300 -> 2600 mg).

If you don't have much inflammation and still have poor quality oil, well, that's probably at the limit of my expertise. Please let me know if any of this doesn't make sense.

[anteloper]

Just to say - thank you so much for this fantastic post.

Thank you for telling me! After everything I've been through-- and my dry eye is not even that serious compared to some of the folks on this forum-- it means a lot to hear that it was useful.

Did you go on tetracycline or use antibiotic eyelid ointemnt / steroids at all?

I didn't. I'm not opposed to anyone trying topical antibiotics for dry eye but none of my docs really pushed them and I guess I was just focused on the other treatments. I'd have to read some medical papers on these before forming an opinion.

I am not a doctor, but I think I can more confidently say steroids are best used only for acute trauma and should be used as little as possible. The first time I had Lipiflow the doc gave me Lotemax to use for 1 week afterwards but I didn't use any of it because it has benzalkonium chloride in it (which is definitely bad for your eyes) and I was worried the steroids would make it harder for me to tell how the Lipiflow was working (if at all). Later, I did Lipiflow again at a different clinic and they did not prescribe any steroids. Longer-term use of steroids can cause weird side effects and I think this is just an area of medicine that is not well-understood.

Also - How did you have bad lid telegentagia? did IPL sort this for you, if so, how many treatments did you have?

I've had over 8 IPL treatments (I forget the exact number) and I have another one booked. They're not cheap but I'm still seeing benefits so I'll probably keep doing them until they stop helping. After the initial 4 treatments my doc recommended just doing a "maintenance" IPL 6 months out but I decided to keep doing them more often and I haven't regretted it. IPL has helped a lot with the telangiectasia both on my eyelids and in my sclera however I still have visible telangiectasia and hypervascularization. I don't think IPL can totally undo this, though it has helped a lot.

Best of luck to you too!

[anteloper]

I don't have rosacea on the face, I'm not sure if this means I don't have ocular rosacea.

I haven't seen any studies about how strong the correlation is between facial rosacea and ocular rosacea. I think I had a bit of facial rosacea tbh (I blush very easily) but it was intermittent. It's possible getting dry eye and doing the warm compresses made my facial rosacea worse as well, hard to say, but IPL helped with my acne and (minor) facial rosacea as well as my eyes.

I thought the Toyo's protocol only treated the bottom lids with pulses? In one of his videos, a "heat-wave" from treating the lower lids reaches the upper lids.

I haven't watched his videos so you probably know more than I do about this. My understand is just that doing pulses directly on the upper eyelids is not part of "Toyos", and that was the part of IPL that helped me the most. If you post a link to the video I'll watch it and post again.

My IPL doc did pulses on the lower lid area but they were not directly on the skin (because of the shape it's hard to press the M22 applicator directly against the skin of the lower lid) and I didn't notice those pulses helping as much.

It's weird but there is a specific feeling I had in my skin when the IPL pulse hit, like I could feel it "working" more in the areas with worse telangectasia, especially on my upper eyelids. I had that feeling below and around my eyes too when I first started IPL, but not anymore-- the telangectasia is almost entirely gone from those areas and now I really only get additional benefit from doing IPL directly on the eyelids.

Similar to you, I feel that most of my issues lies in my upper eyelids.

I have much worse MGD in my lower eyelids, and worse ocular rosacea in my upper eyelids.

One more thing, I thought inflammation is present in almost all forms of MGD? From that I would assume IPL would be better suited right?

Compared to Lipiflow? I think it really depends on whether or not you have the hypersecretory (too much oil) clogging subtype of MGD like I do. MGD will cause inflammation but that inflammation doesn't necessarily come from ocular rosacea-- it could just be inflammation from irritation to your sclera or cornea from being exposed to air due to a poor tear film, or insufficient meibum. It's hard for me to say in general. My skin is very sensitive but not everyone with MGD will develop systemic inflammation via ocular rosacea.

Why do you say Toyos is useless? Is Lipiflow something you prefer more than IPL?

I should check on what "Toyos" means to make sure I'm clear on what the protocol is.

I just meant that what my IPL doc called "Toyos" was horizontal IPL passes under the eyes, and over the nose, NOT directly on the upper eyelid itself (which is what helped me the most).

Unfortunately I kind of need both treatments, it's really hard to pick, even with IPL my MGD eventually comes back and I haven't found a long-term way of treating it well except to get Lipiflow every 6-8 months.

I think if I really had to pick between Lipiflow and IPL I'd have to take IPL and go back to doing more warm compresses and (gentle!) manual gland expression at home. The research suggests that for mild-to-moderate MGD there are substitute treatments for Lipiflow but there isn't any substitute for IPL for treating inflammation (that I know of).

[anteloper]

Sorry for the delayed reply! Past couple weeks have been super busy for me but I set a reminder to check this forum more often.

So for me, my lid margins and stuff look "normal", but on the inside of my eyelid is really red. I'm assuming this is inflammation.

Yeah, I believe this was the case for me too. Obviously "really red" is too subjective so I dug up some photos I took from back then (see attached, retinas blacked out for privacy reasons). Looking back at these photos I notice:

(1) It looks less red than I remember. Like I felt like it was a lot redder. Weirdly it looks redder in the 6-month photo than in the first one. Could be a trick of the light, I think the redness fluctuates a lot and it depends on the photo.

(2) The redness inside my eyelids didn't seem to improve after 6 months of warm compresses, Miboflo, and then Lipiflow, which doesn't surprise me, since those didn't help with the inflammation.

The insides of my eyelids definitely look less red now (I just checked) but I don't have good longitudinal photos since then. I do think the IPL helped with the inflammation.

[wenmyster]

Wow thank you so much for posting this. You are making a positive difference in all who read. Thank you.

Question: you said that most of your meibomian glands are intact. Did any of the doctors you saw manually express them and say the quality of oil you were producing? Apparently, I have a lot of oil coming out but they come out poor quality like crisco. I'm wondering what kind of treatments maybe even the ones you've tried that might improve the quality of oil that I'm producing?

[Luke B]

Hi Anteloper,


Just to say - thank you so much for this fantastic post. For anybody going through a similar situation your post quite literally has the potential to save somebody's mental health.

My story is almost identical to yours, I can relate in almost all ways.

I am personally 5k in the hole trying get out of this mess - excessive blood vessel growth on the inner and margins of eyelids, bad MGD. Luckily I have found the ONLY dr in the UK who treats directly to the eyelids (for anybody wanting to to know - Connan Tam in London, you can google). A fantastic Dr.

The only question I had for you Anteloper if I may - I am trying to attack this issue from all angles as well as IPL. Did you go on tetracycline or use antibiotic eyelid ointemnt / steroids at all?

I was just curious that there is no mention of these options? I have been on tetracycline for 1 month and it is hard to tell if it is working but whatever makes the boat go faster!

Also - How did you have bad lid telegentagia? did IPL sort this for you, if so, how many treatments did you have?

The best of luck to you

Luke

[Luke B]

Hi Anteloper,


Just to say - thank you so much for this fantastic post. For anybody going through

[Aster]

It's hard to compare IPL and Lipiflow because they treat different things. Lipiflow is more effective if MGD is your main problem, IPL is more effective if inflammation or ocular rosacea is your main problem. I never had IPL when my MGD was really bad (I didn't start IPL until 4 months after my first Lipiflow) so I can't say if it would have helped my MGD.

My IPL doc has followed the Toyos protocol (which is most common, you should be able to google this and find more info) plus two to three pulses on each upper eyelid and one to two pulses in the lower eyelid area. This is with metal corneal eye shields inserted. They did a gentle manual expression afterwards which probably helps a bit but not obviously so.

By far the most effective part of the IPL for me has been the pulses directly on my upper eyelids. That's really where my problem is, and I can actually feel it in the IPL (the sensation is different) each time it works. Toyos is basically worthless for me at this point, but my eyelids still need treatment so I keep going back. Toyos alone would still be helpful but the majority of the benefit for me is from treating the eyelids directly.

So for me, my lid margins and stuff look "normal", but on the inside of my eyelid is really red. I'm assuming this is inflammation.

I don't have rosacea on the face, I'm not sure if this means I don't have ocular rosacea.

I thought the Toyo's protocol only treated the bottom lids with pulses? In one of his videos, a "heat-wave" from treating the lower lids reaches the upper lids.

Obviously, I would love to do both lids followed by manual expression.

Similar to you, I feel that most of my issues lies in my upper eyelids.

One more thing, I thought inflammation is present in almost all forms of MGD? From that I would assume IPL would be better suited right?

Why do you say Toyos is useless? Is Lipiflow something you prefer more than IPL?

[anteloper]

Between IPL and Lipiflow, which would you consider more effective?

If it's IPL, do you happen to know how your doctor(s) perform the procedure? (e.g. treating both lids or if they express afterwards?)

It's hard to compare IPL and Lipiflow because they treat different things. Lipiflow is more effective if MGD is your main problem, IPL is more effective if inflammation or ocular rosacea is your main problem. I never had IPL when my MGD was really bad (I didn't start IPL until 4 months after my first Lipiflow) so I can't say if it would have helped my MGD.

My IPL doc has followed the Toyos protocol (which is most common, you should be able to google this and find more info) plus two to three pulses on each upper eyelid and one to two pulses in the lower eyelid area. This is with metal corneal eye shields inserted. They did a gentle manual expression afterwards which probably helps a bit but not obviously so.

By far the most effective part of the IPL for me has been the pulses directly on my upper eyelids. That's really where my problem is, and I can actually feel it in the IPL (the sensation is different) each time it works. Toyos is basically worthless for me at this point, but my eyelids still need treatment so I keep going back. Toyos alone would still be helpful but the majority of the benefit for me is from treating the eyelids directly.

[Aster]

Thanks for the reply!

I actually have another question.

Between IPL and Lipiflow, which would you consider more effective?

If it's IPL, do you happen to know how your doctor(s) perform the procedure? (e.g. treating both lids or if they express afterwards?)