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

    This will be a long post. I posted it on https://dryeyediscourse.substack.com/ as well-- check it out there if you want more bite-size pieces.


    Summary

    Caucasian Male in my 20s in the USA with MGD, ocular rosacea, and mild blepharitis. No obvious cause. Started with severe MGD and mild blepharitis, developed ocular rosacea later. Went through a lot of pain and tried a lot of treatments. Got my symptoms to a livable level mainly through Lipiflow, IPL, and lifestyle changes.

    I have had severe acne, which I think is genetic. I "cured" the acne by switching to an anti-inflammatory diet-- no dairy, low sugar, low omega-6s-- but if I go back to eating that stuff my acne comes back too. I've been a serious computer/phone user since I was young and that's definitely contributed.

    I don't know how "typical" my dry eye is, but I've seen 5 different doctors, and done a lot of research into it, including reading medical papers. I feel like my dry eye is probably as "cured" as it ever will be. It's still a big step down in quality of life, but I've adapted mentally, and I'm still glad to be alive. But it's been a difficult journey and I have a lot of opinions about dry eye treatment. I hope this post helps you, and if it does, please reply below and let me know. You can also email me at "ded" DASH "anteloper" AT protonmail dot com


    Contents

    A. What I Wish I Knew When I Was Diagnosed

    Includes my main advice for other people dealing with the same kind of dry eye I have. I've tried to focus on fresh stuff that I think is missing from the usual resources and recommendations on dry eye online.


    B. My Story

    You don't need to read this if you're just looking for data or recommendations, but sometimes it can be emotionally helpful to hear that others have also struggled with dry eye.


    C. What Worked and What Didn't

    All the treatments I tried, ranked from most to least helpful





    A. What I Wish I Knew When I Was Diagnosed


    If you're totally new to dry eye, make sure you understand the fundamentals of the disease before reading this. I've tried not to repeat the standard advice here since... you've probably already heard/read it a bunch of times. That said:

    Make sure you have an idea (or a hypothesis) about what subtype of dry eye you have. There are many different kinds of dry eye, "dry eye" is just a collection of symptoms, not a diagnosis, and the right treatment depends heavily on the underlying causes for your individual case. This post is about evaporative dry eye. MGD, blepharitis, and ocular rosacea because that's what I have.

    For the medical science behind this type of dry eye, I highly recommend checking out this paper: https://bjo.bmj.com/content/100/3/300 -- in particular the infographic at https://bjo.bmj.com/content/bjophtha...0/F1.large.jpg


    1. Warm compresses may cause ocular rosacea

    I have no other data to back this up, but for me, I think doing warm compresses (Bruder mask) 2x a day for months may have caused or contributed to my ocular rosacea. Heating increases blood flow and for me I think some of that turned into permanent growth of blood vessels in and around my eyelids. Be careful not to over-do warm compresses, and take good photos of your eyelids every month or so to record their appearance. If your eye doctor hasn't heard of ocular rosacea or doesn't know how to diagnose it, find a new doctor.


    2. For patients like me, warm compresses aren't a substitute for Lipiflow

    One of my biggest dry eye regrets is not getting Lipiflow sooner. I have a lot to say about this that would be better as a separate post. But, in short, due to $$$$ incentives and TearScience's marketing, lots of people get pushed to do Lipiflow even if they are poor candidates. For most people, Lipiflow takes some time to work and can temporarily make symptoms worse right after the treatment. End result: many patient reports online that "Lipiflow didn't work". I wish I had never read these, and I wish I hadn't said “no” to Lipiflow after I was first diagnosed.

    It turns out that, at least for me, there is no substitute for Lipiflow. I did warm compresses and Miboflo for many months before my 1st Lipiflow. I did not truly experience relief from MGD until after doing Lipiflow. I believe the studies comparing Lipiflow to warm compresses have misled doctors into thinking that Lipiflow is "equivalent" to compresses if you do them long enough. Maybe this true for some patients, but it hasn't been for me.

    This study: https://escholarship.org/uc/item/4tx7h1x3 shows that you’re more likely to have good results from Lipiflow if you have the hypersecretory subtype of MGD, and/or are male or relatively young. If this is you, I recommend scraping together the $$$ and getting it done ASAP. Don’t be like me and wait.


    3. With the right doctor, IPL is safe, and it's most effective when done directly on the eyelids (with metal corneal eyeshields)

    If you have or think you have ocular rosacea, find a clinic that does IPL on the eyelids (and the face) with metal corneal eyeshields. I've had it done without the eyelids/eyeshields and it didn't work as well. You may be able to judge this yourself based on the level of telangiectasia (tiny blood vessels) in the white part of your eyeballs and on your eyelids.

    The right kind of eyeshields slip under your eyelids and rest directly against your eyeballs. It can be uncomfortable getting them in and out but IPL feels a lot safer with this kind of eye protection. Call the clinic and ask.

    I was apprehensive about IPL because it seemed like an extreme treatment at first. IPL is safe when done correctly, but there are probably sketchy clinics that do it in an unsafe way. Ask questions and do your research. I've had it done a bunch of times. The effect of each treatment is small but they really add up.


    4. 30% of dry eye suffering is mental

    Few if any eye doctors will help you with the mental component. The Facebook groups and this forum show a warped picture of the disease because the people who get better leave, and many of the people who do post are in acute distress. Be careful, and try to avoid reading anything online if you're feeling really bad. You just have to keep going, keep trying new things, journal about your symptoms, and adjust your expectations for life. Forum posts are just anecdotes, not data, so take them with heaping pinches of salt. There were many times where I felt things were hopeless. I was wrong about that and I'm grateful I didn't give up.

    Set aside a block of time at the same time every day to think about your eyes and whether you should adjust your treatment plan. And when that time is up, don’t ruminate on your eyes.

    Dealing with the mental component of dry eye is half the battle. It's really important to acknowledge this, pay attention to your mood, and notice when you're feeling down. It's much harder to deal with the physical symptoms if you're not in a good place mentally.

    Mindfulness, including meditation, and "eye yoga" have been a huge help to me. I discovered I could relax the muscles in and around my eyelids, and this actually reduced my pain a lot! No doctor I've seen has mentioned anything like this, and I think it's hugely overlooked. I'm considering writing a separate post about this; please let me know below if you're interested.


    5. There is a huge difference in quality between dry eye doctors

    Lots of doctors claim to treat dry eye but don't really understand the disease. I've been seen at 5 different clinics at this point, and I truly believe that 4 of those deliver care that's just not good enough. I wasted time getting treated by the wrong doctors, and I wish I'd tried more clinics when I was first diagnosed.

    Haven't been to an academic medical center but in my experience, the optometrists I've seen know and treat dry eye better than the ophthalmologists. YMMV, just don't assume that ophthalmologists know more because they have an MD. Most of the training to become an MD has little relevance to dry eye.


    6. Information sharing in medicine, including in dry eye, is poor.

    Doctors don't seem to talk to each other, and I've talked to doctors with contradicting views on causes and treatments. Pharma and industry-sponsored studies are often biased, and the industry spends $$$$ on marketing to influence what data your doctor sees. Question what you read online and what your doctor says. If your doctor sees a biased sample of dry eye patients (e.g. only LASIK patients, or only older patients), their treatment approach might not be ideal for you.

    It pains me to say this during covid because most Americans should listen to their doctors *more*-- (f*** the covid skeptics, anti-maskers and anti-vaxxers) but in the end, your dry eye is unique and you'll need to experiment to find what works for you. This is a long process and you just have to put the time in.


    7. Dry eye treatment is really expensive and managing financial stress is a crucial part of fighting the disease

    Simply put: if you are stressed about paying for treatment, you will make worse decisions about your life and your healthcare. I know this from personal experience.

    I don't think there is enough discussion about the financial costs of dry eye treatment, and the stresses of paying them. And providers are rarely sympathetic to this. I wish I had good news here. Unfortunately, dry eye is a progressive disease, it will get worse if you don't treat it, and many of the effective treatments are expensive. Your best hope is to do whatever you can to organize your life around fighting this disease, including cutting costs wherever you can to help pay for treatment. This can be especially hard because dry eye makes it hard to work, and quitting your job, if you can, may actually be best for your long-term health and finances. I really felt the financial anxiety, so my heart goes out to you. In particular, I put off Lipiflow because I felt the price was unreasonable. It's especially sh**ty in the USA because health insurance is tied to work, and Medicaid doesn't cover Lipiflow or IPL. If you feel trapped, I understand, cause I've been there. Don't give up. You have to take the chance that things might get better, even though it's scary to drop thousands of dollars on treatments that cannot guarantee results. I wish I could give more help or advice here but this really comes down to your individual financial situation.

    Also: a lot of people who get dry eye are older folks with savings or office workers with higher incomes, but not all dry eye patients are like this. Don't let eye clinics push you into paying for tests or products you don't need.




    B. My Story

    CW: depression

    First time I had dry eye symptoms was about 3 months before I got diagnosed. I was hiking somewhere windy and my eyes were painful and photosensitive. I checked the mirror later and remember seeing obviously clogged meibomian glands but I had no idea what they were (I had never heard of dry eye) at the time so I didn't do anything. My symptoms went away in days and I just assumed I had "healed" and forgot about it.

    Two months later I started having foreign body sensation while working on the computer. I assumed it was due to dust and/or bad ventilation in the building and did my best to ignore it. I'd always been healthy (or so I thought), so why spend hundreds of dollars just for a doctor to tell me nothing's wrong?

    About a week before my diagnosis, I went somewhere cold and dry, was reading on my phone a lot, and that's when the symptoms really started. It was pretty sudden, severe, and debilitating. I had all the typical symptoms of dry eye, as well as eyelid spasms, and intermittent stabbing pains near the center of my cornea, like someone was jamming a pin into my eye.

    When I got back I used my insurance's website to find an optometrist. She basically just looked at my eyes, told me I had dry eye, gave me eye drops (with preservatives!) and told me to do eye drops and warm compresses. So unhelpful.

    After that I saw an ophthalmologist at an eye care center. Dry eye was listed as one of her specialties. She gave me a more thorough diagnosis (including mild blepharitis) and recommended Lipiflow, warm compresses, eye drops, blinking exercises, and fish oil. I had read about Lipiflow online but balked when she told me the price. I had never really had medical bills so it suddenly seemed crazy to drop $1000 on a treatment that wasn't guaranteed to help. I left feeling discouraged and really lost.

    Around this time I quit my job. Quitting was the right choice to protect my eyes, but wow, on top of the pain, quitting really hurt my mental health. There were some days I couldn't get out of bed because the mental toll was so bad. I lost my work insurance and had to find a new plan on the ACA marketplace. I felt abandoned by society and the healthcare system, and I felt like my life had become worthless. I was afraid I'd never get hired again so I tried to hide things from my co-workers. I thought about suicide a lot.

    My routine at this point was basically just Bruder mask 2x a day, fish oil, manual expression by rolling a q-tip on my eyelids, and trying to avoid anything that made my symptoms worse. My mental health challenges literally made me stupid and irrational. Part of me had given up on life, and on looking for solutions. From reading forums like these I had concluded that Lipiflow was a scam. My symptoms were gradually getting a bit better, but it was excruciatingly slow, and my quality of life hadn't improved much. I lost a couple months in this pit of despair.

    Eventually I found a LASIK doc who started treating dry eye after some of his LASIK patients got it. He told me that he used to do Lipiflow but found it ineffective and switched to Miboflo. He was wrong about Lipiflow/Miboflo for me, but I have to thank this guy, he was extremely compassionate and it helped so much just to have a single doctor acknowledge the pain, I'm tearing up a bit just remembering. He was also open to considering the effects of diet and recommended a good eyelid cleanser for my blepharitis, also did meibography to confirm that my gland loss was relatively minimal. I did Miboflo at his clinic, and it helped somewhat, but my quality of life was still pretty poor at this point, and I was still not working, and could hardly imagine ever dating again.

    Thankfully I had recovered enough to realize that my personal indignation against TearScience's pricing wasn't worth giving up a chance at salvaging my life, and I decided to try Lipiflow. It's hard to describe how I felt after the procedure. I had no side effects once the anaesthetic wore off. The day after, my eyes felt so good I wanted to run into the street and jump for joy. I felt my life had been saved, but I also felt dissociated from my body. It was unreal, and I didn't dare hope that my eyes would stay that way. Would it last? And what did it mean that my life had been saved by a treatment I'd spent the previous months hating?

    Fast-forward a couple months. I started working again. My symptoms did get worse but I don't think work caused it. I had asked my ophthalmologist about IPL before and she basically knew nothing about it, or ocular rosacea (red flag!). IPL was the big treatment I hadn't tried, and so, buoyed by my success with Lipiflow, I decided to find a new clinic and give it a shot. Their optometrist diagnosed me with ocular rosacea (better late than never), and I started treatment. The first time I got IPL I was so scared the provider laughed at me (f*** them!). I basically had PTSD from the months of pain I'd been through. For me, IPL is not an immediate win-- it actually makes my symptoms slightly worse for about a week afterwards-- but the cumulative effect is huge. I recommend doing it, but if your doc does manual expressions afterwards, make sure they don't push too hard; I think this can damage glands.

    After another Lipiflow and my initial 4 IPL treatments, I still had symptoms, but my osmolarity tests came back "normal". My doc recommended switching to a maintenance schedule but I've continued with the treatments. I'm still seeing benefits. Unless things change, I may keep doing IPL regularly for the rest of my life. Who knows.

    My dry eye still impacts my quality of life a lot. I can’t really read on my phone anymore or play video games but I can use the computer enough to work. My dry eye doesn’t stop me from doing the important things. I have no idea what will happen if my eyes get worse again, but I've learned to live with the fear and really understand that life is temporary. For me, dry eye is a reminder that if something is really important, I should go and throw all my energy into making it happen. And it helps me waste less time on TV and social media.

    Things have turned out better than I ever dared hope for, but the process was a lot harder than it should have been. Preventative healthcare is basically nonexistent in the USA and I think my dry eye could have been totally prevented if I had known the signs. Lipiflow and IPL have been lifesavers for me, but I still think the standard of care for dry eye is very poor relative to how emotionally and mentally challenging this disease is.


    C. What Worked and What Didn't

    More helpful treatments are closer to the top of each list.

    Most helpful:
    • IPL (on the eyelids, with metal eyeshields)
    • Lipiflow (so far it’s been great for 6 months, then the MDG comes back)
    • blinking exercises
    • "eye yoga" and facial massage to relax eye, eyelid, and facial muscles
    • meditation
    • exercise, sleep, stress/anxiety reduction
    • plant-based anti-inflammatory diet
    Helpful:
    • Zocular Zocufoam (foaming cleanser)
    • Cliradex Light (foaming tea tree cleanser)
    • EyeEco Onyix silicone sleep mask
    • GENTLE manual expression at home after Blephasteam or a warm compress not more often than 1x per week. I bought a metal paddle online specifically for this, did I mention you have to be really patient and gentle?
    • manual debridement / exfoliation / cleaning of eyelid margin every morning with organic cotton q-tip (I kid you not, you have to get the organic cotton ones, name-brand q-tips made my eyes sting!!)
    • fish oil
    • avoiding alcohol, spicy foods, and sunlight (rosacea triggers)
    Not sure if it helped:
    • Blephasteam. I think it’s probably better than warm compresses for most patients with mild MGD but I didn’t use it long enough to notice a persistent difference. I also didn’t start Blephasteam until after doing Lipiflow twice. Won’t work for severe MGD.
    • Miboflo (relieves MGD symptoms a bit, but not sure if it lasts)
    • Cliradex towelettes
    • Zocular ZocuShield gel
    • Avenova (used at least 1x per day for 2 weeks, hard to tell if it made a difference)
    • Green tea with lemon (but h/t to Hokucat for the good idea!)
    Don't think it helped:
    • Warm compresses 1x or 2x per day (tried both Bruder mask style, and the USB powered ones). This did improve my tear film when my MGD was bad, but I don’t think it was worth it because they seem to have caused or exacerbated my ocular rosacea. I should have just gotten Lipiflow instead.
    • Eyedrops, including Retaine MGD. Temporary symptomatic relief that went away quickly. I dont use any eyedrops. That deserves its own post.
    • Overly forceful manual expression, including when done by the doctor after IPL. The expression should be gentle. If a lot of force is required then the gland is clogged and must be heated before it can be expressed.
    • The "bundle method" for warm compresses, maybe I have the wrong kind of towels but it really didn't work for me. It was definitely less effective than both the Bruder and USB warm compresses.
    • Running hot water on my eyelids in the shower




  • #2
    Hi, I saw you wrote a lot back on my posts so I thought I could ask you a few questions too.

    I'm a 19 year old male and has had dry eyes for a month.

    How long did it take you to finally do Lipiflow?

    Did you have any inflammation in your eyes prior to Lipiflow?

    Was your symptoms something along the lines of fast tear evaporation inducing this "airy-menthol" pain in your eyes?

    Did you massage your eyelids after warm compress? If yes, how did you do it?

    Would be really cool if you could share your TBUT, Schirmer's score ect.

    Comment


    • #3
      Originally posted by Aster View Post
      How long did it take you to finally do Lipiflow?
      Took about 6 months from when my symptoms started.

      Originally posted by Aster View Post
      Did you have any inflammation in your eyes prior to Lipiflow?
      Not sure how to answer this. There will typically be some inflammation with any level of dry eye symptoms, but I don't think I had extreme levels of inflammation (e.g. the kind that could be induced via risky/aggressive treatments like manual meibomian gland probing). My ophthalmologist said I had mild blepharitis which is a kind of inflammation. I don't know of any objective medical way to measure inflammation other than testing for MMP-9 (brand name InflammaDry) which is not super helpful since it's a binary yes/no outcome.

      Originally posted by Aster View Post
      Was your symptoms something along the lines of fast tear evaporation inducing this "airy-menthol" pain in your eyes?
      It's hard to compare subjective symptoms via forums but I think I had some of that, maybe not the "menthol" but definitely fast tear evaporation. I had most of the different kinds of symptoms.

      Originally posted by Aster View Post
      Did you massage your eyelids after warm compress? If yes, how did you do it?
      Sometimes, sometimes not. Overall, warm compresses haven't helped me (I think they caused or exacerbated my ocular rosacea) but I do find it helpful to do massage without a warm compress first. I typically use the knuckles of my thumbs and press my upper eyelids in a downward motion and lower eyelids in an upper motion. It is important to moisten or lubricate the thumb knuckles so they glide over the skin with even pressure, and don't cause the bottoms of the upper eyelids to bunch up.

      Originally posted by Aster View Post
      Would be really cool if you could share your TBUT, Schirmer's score ect.
      My TBUT fluctuated a lot and I never had a Schirmer's test. Based on what I heard from doctors, I'm not sure how helpful TBUT is for assessing the severity of someone's dry eye. I definitely have never had the aqueous-deficient subtype (lots of eye watering) thus no Schirmer's test.

      Sorry for the late reply, and hope that's helpful.

      Comment


      • #4
        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?)

        Comment


        • #5
          Originally posted by Aster View Post
          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.

          Comment


          • #6
            Originally posted by anteloper View Post

            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?

            Comment


            • #7
              Hi Anteloper,


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

              Comment


              • #8
                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

                Comment


                • #9
                  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?

                  Comment


                  • #10
                    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.

                    Originally posted by Aster View Post
                    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.

                    Attached Files

                    Comment


                    • #11
                      Originally posted by Aster View Post
                      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.

                      Originally posted by Aster View Post
                      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.

                      Originally posted by Aster View Post
                      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.

                      Originally posted by Aster View Post
                      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.

                      Originally posted by Aster View Post
                      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).




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                      • #12
                        Originally posted by Luke B View Post
                        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.


                        Originally posted by Luke B View Post
                        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.

                        Originally posted by Luke B View Post
                        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!

                        Comment


                        • #13
                          Originally posted by wenmyster View Post
                          Wow thank you so much for posting this
                          Thank you for reading and for letting me know! It means a lot to me.


                          Originally posted by wenmyster View Post
                          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.

                          Comment


                          • #14
                            Originally posted by anteloper View Post


                            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!

                            Comment


                            • #15
                              Originally posted by wenmyster View Post
                              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.


                              Originally posted by wenmyster View Post
                              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.

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