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Thread: My Success Story - Fighting MGD/Blepharitis

  1. #1
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    My Success Story - Fighting MGD/Blepharitis

    *Note: This posting is not intended to be medical advice. This is only my attempt to tell my story and inform people on what I do daily. Please ask your doctor before attempting anything that I do to manage my condition.*

    I've been encouraged by another poster to write my success story as an MGD, posterior blepharitis sufferer. I also remember hearing that when people "solve" their dry eye issues, they seem to disappear and nobody knows how they were successful. Because I struggled for 2-3 years and tried just about everything, I figure people can benefit from my notes and what I am doing that "works".

    I will try to be brief. I will also try to keep my criticism of ophthalmologists (and I have plenty) to an absolute minimum.

    I had LASIK surgery in November of 2006 and things went mostly fine. I had morning eye dryness that went away pretty quickly after waking. I remember having a feeling that something was not right, but the improvement in my vision was good and I only had minor complaints.

    I went overseas for a year to Southeast Asia and things started to snowball after about 6 months over there. I had swelling develop under my eyes and persistent dryness in my right eye. I started looking and feeling terrible.

    When I returned to the United States, the issues became constant and it became "acute" very fast. I went to see an ophth doc that put in punctal plugs and sent me out the door -- no improvement.

    To be brief, over the next 6 months, my condition worsened. My eyelids were red and irritated. It was painful to keep my eyes open. I felt anxiety and experienced panic attacks. Horrible, horrible, horrible. I shopped for doctors that would take me seriously and finally found one that would give me a diagnosis of Meibomian Gland Dysfunction. I'll skip listing everything that I tried and only list the things I am sure helped me.

    My dry eye story has two phases, classified by me and I am not medically trained. They are my "acute" phase and my "chronic" stage. The acute stage was that miserable, "oh my god" phase and the chronic stage is where I am currently, a "mostly good", sometimes irritating reality.

    What helped:

    ACUTE:

    Restasis (kept in refrigerator, 3x/day), Alrex or Lotemax (helped bring down the inflammation), hot showers (was taking at least two a day), eyelid massage (expresses the oil), Tranquileyes Goggles (with moist inserts at first, w/dry inserts later on).

    I also had 3 IPL treatments at the Toyos Clinic in Memphis. This did not cure me, but it did help get the oil flowing and decreased the inflammation. I feel like my last trip to Dr. Toyos helped me transition from the Acute stage to the Chronic Stage.

    CHRONIC:

    Three things have made a world of difference for me:

    1.) Nighttime Protection - My lagophthalmos (eyelids open at night) and my tendency to dig my face into my pillow at night is a HUGE factor in my dry eye. No doctor ever took this seriously, but my experiments in this area have paid off big-time.

    I now put in a couple drops of Optive eyedrops. I tape my eyelids to my cheeks with one piece of Adhesive Medical Tape. (by the morning the adhesive has worn off enough that it does not take any eyelashes with it) And I now wear the Eyeeco Onyix Silicone Sleep Shield. I also use two pieces of tape to fix the goggles to my face to prevent them from falling off.

    I put a pillow next to my one side and I sleep on the side of my bed. This keeps me sleeping on my back. (which was very unnatural for me at first)

    Of course, I put in more eyedrops immediately after waking.

    2.) Heat treatment - I use the Thermoeye Beads Inserts 1x/day. I used to use the Thermoeye Instant inserts but they became such a hassle to use, boil, and re-use that I gave up. The Beads works pretty well, giving at least 5 minutes of good heat. (Just to prove I'm not an Eyeeco spokesman - I think the non-Bead microwaveable inserts are the worse eye care invention ever and should be pulled from the market. They retain heat for like 30 seconds. What a ripoff.)

    After the heat treatment, I massage my eyelids to express some oil. Then I put in about 4 drops of refrigerated, preservative-free drops in each eye.

    3.) Eye rinses (a.k.a. Lid scrubs) - I use a solution of 1/2 baby shampoo and 1/2 water. I tried using both the Sterilid and Ocusoft brands but I had bad reactions to each. I do this a couple times a week, but I used to do it every day and sometimes twice a day. I just put a little solution on my fingertips and I start washing the outside of my eyes, working my way to just inside the lower eyelid where the glands are located. I lightly wash this area and then rinse throughly with water from the shower head. (Be careful with all of this if you try it.)

    Finally, I've made many changes to my lifestyle. I accepted the fact that I had a chronic condition that required my attention. I took Cymbalta for a few months to get a handle on the anxiety this condition caused.

    I now am a big health food nut. I drink plenty of green tea, which I brew on the stove in a big pot. I add various healthy fruit juices to "infuse" the tea. I make drinks with Chia seeds (great source of Omega-3s). I try to eat lots of fish. A typical dinner at night for me is brown rice and steamed vegetables.

    For supplements, I take turmeric (anti-inflammatory properties) and Nordic Naturals Fish Oil + Vitamin D3.

    Over the past 3 years, I've also noticed a connection between physical activity and my eye health. When I had a "flare up", sometimes all I could do was go outside and run. This always helped. The endorphins and blood flow somehow made it better. I also do Bikram Yoga on occasion - the 105 degree heat surely helps my eyes and the balance it brings the body may help healing.

    Bottom line - try things and stick with them for a couple weeks (or in the case of Restasis - 3+ months) to see if they help. If they do, make it part of your ROUTINE. If not, scratch it off your list. Go to your doctor for advice but don't be afraid to be your own advocate.

    Dry eye has become your path. You didn't ask for it. It just happened. It is part of your story now. You will find help. Believe me. I was so sad and depressed many times. I still get sad sometimes when I think about everything I missed out on. I'm way behind on my life plans at the moment. However, when I realize how far I've come and how strong this struggle has made me, I feel ok about the world. When I connect with someone else that is struggling with a health condition, I somehow feel lucky.

    Best wishes to you all. Please ask any questions. I considered including a list of everything I tried that didn't work but it would be a long list!

    --LRDES

    P.S. If you're interested in reading posts I wrote in my "Acute" phase, check out my blog: http://www.dryeyezone.com/talk/blog.php?u=3228
    Man, I shudder when reading those posts. That was a difficult time in my life.
    Last edited by LasikRelatedDES; 18-Jul-2010 at 12:47.

  2. #2
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    Happy

    Makes me so happy to read of your continued improvement. It really does.

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    An excellent post and a well-though-out plan of action. Always good to hear there is hope, even years on. Thanks LRDES.

    Rose

  4. #4
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    Especially comforting to read a post like this from another LASIK person. Continued best wishes!

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    glad to hear you have this under control. did your eyelid puffiness recede along with the improvement of your symptoms?

  6. #6
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    LRDES,
    What type (brand, type, & size) of medical tape do you use?
    I would like to try this!

    My story is almost identical to yours as far as how things started.. never thought I had problems, except for some morning dryness. Still have that now, but it seems like that slowly progressed to the more chronic dryness..

    Sucks, big-time!!

    I have Tranquileyes AND Ecoeyes Onyix I think it is.
    Tranquileyes seemed to never stay on right.. They'd always be falling off, and now the foam ring around edge is falling off.
    Onyix seemed to work fairly well.. but Idk what happened.. I stopped wearing them due to comfort issues or something.. Or maybe just not working right.

    I still feel like my eyes open at night, and sometimes VERY dry when I awaken.


    Thank you for your advice.

    Boston

  7. #7
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    Quote Originally Posted by Dinobear View Post
    glad to hear you have this under control. did your eyelid puffiness recede along with the improvement of your symptoms?
    Replying months later...

    Yes, the puffiness decreased some though I still have bags under my eyes that I did not have before this started. Sad to say. But I'll sacrifice appearance for functionality.

  8. #8
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    Quote Originally Posted by boston View Post
    LRDES,
    What type (brand, type, & size) of medical tape do you use?
    I would like to try this!
    Just Johnson & Johnson First Aid Waterproof tape. I think this is the link:

    http://www.cvs.com/CVSApp/catalog/sh...ump&navCount=3

    Unfortunately, the stores where I am now only have the Heavy-Duty variety and that is painful to remove in the morning.

  9. #9
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    Tranquileyes and eyelid puffiness?

    I have registered with DEZ and am posting below on behalf of my girlfriend, Sarah, who has been suffering from DES for the past 3 yrs.

    Thanks for your post LRDES. New to the board but not new to the hell that is DES. I will post my entire story at a later date (2.5yrs into the ordeal) but am too exhausted to get into all details right now. Long story short had my DES largely under control after also going through an acute phase. Eyes were only mildly puffy, was left with a pigucuela after acute phase and also had to do warm compresses daily, restasis, lid scrubs, night ointment, etc. At this point I had all of my eyelashes and my eyes were white and clear for the most part and had "sufficient" moisture (schirmers of 5 & 7) on my eyes. The warming compress that I was using (CVS reusable heat therapy pack for first aid - same thing as thermoeyes insert but much bigger and lasts longer - wrapped in thin, moist towel) was working - I could literally feel the MG become unclogged, "the goo" would release very noticeably on my right eye and somewhat on my left eye. Unfortunately, I found a supplement GABA (beware this supplement or others that contain it if you have DES especially MGD) to help with my anxiety (again will post full story later) which worked tremendously well for my anxiety but long story short within three weeks I was super calm, felt great emotionally, didn't even care that my eyes had gotten noticeably more swollen. Both my eyelids and my eyeballs actualy started to swell. Eyes were extremely irritated and sensitive, eyelashes turned white and became limp but i still didn't really care because i was so mellow from GABA (thought i had found a miracle cure for my anxiety) until it went from double vision, to blurry vision, to completely not letting me look at anything at all because it felt like someone was sticking knives in my eyes, it became so painful (shooting pains in my eyeballs) that I could not look at anything - it "stopped my vision". I was also no longer getting any "goo" when using my warming compress. Eyes were so sensitive to everything that my entire routine was shot because anything and everything I did for my eyes was so painful. One upside prior to the actual vision stopping was that my blood pressure had gone down sufficiently that my eyes were white again vs bloodshot red all the time. Stopped taking the GABA at this point due to eye problems but ended up going on and off of it many times over the next year+ as positive benefits for anxiety were so great. I now know that it sent me into withdrawal as well as into klonopin withdrawal from klonopin i was taking, yes there is a hell far worse than DES alone, try DES with klonopin withdrawal (massive panic attacks, anxiety, insomnia and my eyes bulging out of my head). You can see how going this type of med (benzo for anxiety) does not work well with DES. I am now left with very dry (like the sahara), extremely sensitive, irritated eyelids and eyes, thickened eyelid margins, painful vein on my eyes, blurry vision and my skin in general and especially on my eyelids is very thin due to constant anxiety and insomnia over past 2yrs. Host of other horrible side effects that I won't get into.

    My only beef with my old system (pre GABA mess) was that it left a mess of spider veins all over my eyelids from doing the hot compresses every day. It's also difficult to implement due to weakened physical condition and poor skin quality. I also have now what I refer to as "stress-eritis," bleparitis caused by severe anxiety attacks throughout the day due to klonopin withdrawal. Anyone reading this, I am not some drug addict or recreational user this was prescribed to me for GAD (generalized anxiety disorder). More on this in my full "story" post.

    I have added the tranquileyes (TE) to my routine by wearing them overnight. I do have beef with the tranquileyes Eventhough they do seem to help restore some moisture to my eyes. After reading your post and another persons post in which she described her eyelids swelling after using TE i am wondering if there are others out there having similar experience with eyelid swelling due to warm moist environment around the eyes created by the TE when worn overnight. This seems to make sense since warm moist environment would increase blood flow.

    My questions are:
    1-has anyone else experienced this swelling when using TE overnight?
    2-I would like something positive to come out of all of this and would like an alternative heat source for the mgd as my previous one created veins on my eyelids Even though it worked. I noticed that you specifically were using the thermobeads for mgd expression. How did they work for you? Or anyone else reading this. Specifically, do you use the white pads between your eyes and the beads? How hot do you make water to soak beads in? And how long does it take for them to get warm? And how long do you leave them on your eyes before attempting to express your MG? And has this method of not having heat directly on lids created any veins on your eyelids?

    Basically I'm looking for a new warm compress system to use in the morning, in junction with TE, and am concerned about swelling from using TE overnight and applying too much heat to already damaged eyelids. Are the thermobeads, even though they don't directly contact the eyelid effective enough to get the goo out? I don't want to have to revert to my old system due to the fact that TE puff up my eyelids at night and I'm not comfortable with that direct heat on already puffy lids. I will revert to old system if I have to because I know this system will eventually work again but I want to be able to continue using TE at night as they give me more moisture in the morning.

  10. #10
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    Quote Originally Posted by TJSULLMAN View Post

    My questions are:
    1-has anyone else experienced this swelling when using TE overnight?
    2-I would like something positive to come out of all of this and would like an alternative heat source for the mgd as my previous one created veins on my eyelids Even though it worked. I noticed that you specifically were using the thermobeads for mgd expression. How did they work for you? Or anyone else reading this. Specifically, do you use the white pads between your eyes and the beads? How hot do you make water to soak beads in? And how long does it take for them to get warm? And how long do you leave them on your eyes before attempting to express your MG? And has this method of not having heat directly on lids created any veins on your eyelids?
    1. I did not notice any swelling from wearing the TE. Try it without moistening the inserts and use eyedrops. The tap water could be irritating your lids. Other than that, I'm not sure.

    2. I really recommend the Tranquileye Beads. I pinch them and just apply the heat to the eyelid margins (on the exterior) where the MG glands live. This keeps the rest of my orbital area from getting too hot.

    I put a coffee cup of water in the microwave for 2mins 30secs and it usually comes out boiling. I wait for it to cease boiling before I put the Beads in the water. I let them sit in the water for a minute. I then take them out and I LET THEM COOL A BIT until I can hold them in my my hands without getting any burns. I then lightly apply them to my eyelids. (CAREFUL! Don't burn your eyelids!) Using the white pads can help with this but I don't use them.

    I keep the beads on my eyes for 4-5 minutes until they are no longer warm. At that point, I might drop them back in the water and start squeezing my eyelids to express oil. Then I will apply the Beads for another 1-2 minutes and express again.

    Then I put in a bunch of PF eye drops to rinse out my eyes.

    I have not noticed any veins but I might have some. Honestly, I don't look in the mirror very much anymore. Dry eye has changed my appearance so I just try hard not to care. I figure it is more important to be able to keep my eyes open and function in society.

    Good luck!

    LRDES

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