Advice for Ocular Rosacea, Blepharitis, Dry Eye Nightmare

[trishk]

I am a 46 year old healthy female. Ocular rosacea, blepharitis, severe photophobia and dry eye began in January. I had only mild dry eye in the past and I occasionally used Systane drops (nonpreserved). I wore eye makeup and enjoyed the outdoors (running, hiking, swimming, yard work, etc.) I have never had facial rosacea. My eyes are a mess and my cheeks are only slightly rosy. Three visits to the opthamologist, two to the dermatologist, a visit to an ENT and quite a few visits to this website have led me to this post.

Currently trying:
Doxycycline 100 mg 2 x per day (2+ months)
Spironolactone 50 mg 2 x per day (6 weeks)
Restastis (one month)
TheraTears supplements 3 per day (fish oil, flaxseed oil, E)
Lysine
MultiVitamin
OcuSoft Cleansing Pads
Erythromyacin ointment at night
Systane Ultra preservative free drops 3-4 times per day
Ambien

I use polarized climate control sunglasses (WileyX) when I must be outdoors, which I now limit. I no longer wear eye makeup, which I miss. I have gone for allergy testing and have mild allergies to oak, ragweed, dogs, cats, and feathers. I've been on Tobradex ointment and drops, but my ocular pressure raised and I don't think it helped anyway.

I do not drink alcohol or caffeine; I don't smoke, or eat unhealthy foods. I eat mostly vegetables and fruits, and have stopped dairy. I am looking at going completely wheat and gluten free. I eat very little bread or sugar now. I cannot afford to lose weight, as I already have a tall thin frame. I had my hormone levels checked with my gynecologist, as I am on Premarin 3 years post hysterectomy. Hormones checked out fine.

I go back to the opthamologist this week and the dermatologist next week, though I feel they have run out of options. I have switched lubricating drops twice, trying GenTeal and Refresh drops. I am considering trying Manuka honey on the lids or ionized silver drops as a last resort. I am also thinking about acupuncture.

What else can I try??? This has changed my quality of life drastically. I have supportive family and friends, but I don't go out much due to the way my eyes look and feel. Currently, I have irritated and red eyes and lids, very dry feeling, gritty at the inner corners, and a small irritated bump on the lower inner eyelid rim. Any advice (or a miracle!) would be greatly appreciated.

[LaDiva]

Wow. I understand and my heart goes out to you trishk. A year and a half ago I had bright red eyes, mgd, dry eye... Things started out mildly about three years ago, and escalated as stress, lack of sleep and poor eating habits took over. Sounds like you have the food situation pretty well in hand. I quit eating sugar entirely, as well as gluten, acidic fruits; a whole list of things. Then I started looking for stress reduction methods and quit trying to do so much. The bottom line is that I had to get the inflammation levels down, and that hasn't been easy. Food was key, stress reduction was key, drugs were not key. Every drug I put in my body made things worse. The doxy didn't help, and I eventually was having problems with food absorption, yeast and digestive tract problems. Green tea helps, and everything you put in your mouth matters. Not easy. My eyes are 75% better, but not well yet. I am praying, and keeping hope. It is hard. PM me if you like, and I'll share more. We have the same eye issues, and it can truly be a nightmare. You are so right. Sending good wishes for good things.

[Katewest]

I agree with LaDiva, the more drops I put in my eyes the worse and more inflamed they became. I also have ocular rosacea and possibly some allergies although I came up neg for all. The tobradez made my lids puffy so I stopped after a week. The restatsis was the worst! I don't even use artificial drops anymore b/c they make things worse. I do use a humidifier at work and home. Protective glasses outside. Computer breaks. Healthy eating, ie. very low sugar and carbs, no dairy or caffeine. I think if you can find your trigger you could get the inflammation down. I think mine is uncomfortable situations. If I get embarrassed. mad, surprised, anything like that I flush. And usually have a bad eye week after that. Heat did not help me. I do the LAtkany eye spa though, just after the shower. I also take Omegas and NAC, although I don;t think the NAC really had much of an effect. Some people really like it though.
Lastly, I am going to be fitted for Prose lenses next month in Boston. I am excited but have not heard many ocular rosacea/MGD ppl on here say they had success. I tried synergies and sclerals with no help.

[trishk]

Thank you LaDiva and Katewest! Your suggestions and encouragement help. I am searching for things that work and trying to figure out the triggers... such a frustrating process. Yes, Katewest, I found the heat compresses aggrevated my lids. Some days, I think I will just quit all meds and drops and see what happens. Such a frightening thing to consider, as I can at least leave the house some days now. There were a few weeks that I lived like a vampire; looked like one too! Thanks again for your support

[Peppermint]

Hi Trish-
You sound a lot like me. I recently turned 45 and have ocular rosacea. I first got blepharitis back in Nov 2011. It was an awful flare up that came out of nowhere. Before that, I rarely had an issues with dryness but I did have some photo sensitivity. For months I was miserable trying to figure out what caused this, as I was/am very healthy. I was a vegan at the time, ate only organic foods, and exercised regularly. I had my hormones tested, went on doxycycline (which I still am on now), had food allergy testing done, acupuncture, etc. I've since started eating meat(paleo-low carb & sugar), gone gluten free, no caffeine or alcohol, and am on bio-identical progesterone. I can say that from my very worst months in the very beginning (which were filled with pain,depression & despair) to now, I'm probably 95% "normal." On my very best days, I'm probably 97% normal. I'm still hopeful that one day, this will all be behind me. Do not lose hope. It is a very slow process and it's filled with detective work. It's extremely frustrating but you are not alone. I wasn't able to wear eye makeup for months, and now I wear liquid eyeliner(dr. hauschka) and eye shadow on weekends with minimal issue. Mascara is still tricky and I'm still in search of one that doesn't bother me. I am a former make up artist so not wearing makeup for me was a HUGE deal and totally affected my self esteem. It took me a long time to get used to seeing myself without eye makeup.
How are you doing now?

[Faith1989]

Hi peppermint.

Glad to hear you are feeling better. I am a makeup artist as well and don't even remember the last time I wore it! I still do it freelance sometimes but don't wear makeup to my jobs. Some questions if you don't mind

Did your redness improve as you removed "toxic" foods from your diet?
Do you use any drops?

I am recently going off Restasis. I used it for six months and my eyes slowly got more and more red. Now that I am off, I am having a slight rebound but am using a mild steroid for the next two weeks.

[Peppermint]

Hi Faith-
The redness on whites of my eyes has improved a lot! I've probably seen the most improvement in that the last few months. They pretty much almost look normal on most days. On great days they are pretty white. I've done so many changes to my lifestyle that I can't figure out what specifically has helped. I just know that I've progressively gotten better over time. The food allergy test I did was by a company called ALCAT. They tested about 400+ foods and I eliminated all the ones that I had a severe and moderate intolerance too. I did that in May 2012 and I saw the most overall improvement in my during that summer. Maybe it was the food or maybe my hormones started to become more balanced or maybe the blepharitis was naturally getting better over time? So hard to tell! I never went on restasis. The only drops I use are homeopathic lubricating drops that I buy at Whole Foods. They are called Optique by a company called Boiron.
Good luck with the steroids. I hope they help and I'm sure the redness will subside over time. I do 2 cold compresses a day with ice water and that always helps whiten my eyes and they just feel better too.

[Faith1989]

Wow thanks for the advice and encouragement! I want to also get the food allergy testing but its expensive right now. I do diet but honestly haven't gone " hard core" enough. Now that I am off Restasis ill start. The steroids do help and will probably do a maintenance dose for a while after my two weeks are done. I really miss my white eyes. My doctor said I just have mild blepharitis and dry eye but I suspect it's ocular rosacea as my skin kinda flushes a little now and I do get some very mild acne. I also take doxy 100mg a day. Being in skin care for years, I know what ance rosacea looks like, but mine is very very mild but really affects my eyes.

What are your worst food triggers? Gluten and dairy? Just curious...if u don't mind me asking!

Oh and p.s. there is an organic mascara by Physicians Formula that has a green leaf lid on it. I use it very seldom but its the only one I can use and comes off with water. There is nothing harmful in it chemical wise, and it is 100 percent organic. It's not very expensive, I think around 17.00...may be worth trying!

[Peppermint]

Thanks for the mascara advice! I will definitely try that one! I'm on doxy 50mg every other day. My ophthalmologist doesn't want me off of it and thinks that is really what helped me. The last few times when I tried to go two days straight without it, a few days later I had some not so great days. As far as food goes, I used to eat almond butter daily bc I thought that was healthier than peanut butter. Turns out, almonds came up as a severe intolerance for me, along with carrots, honey and mustard. All these foods I ate daily and I stopped as soon as I found out they were causing problems. What is strange is I never had a noticeable immediate reaction to any of these foods. I can't figure out any foods that cause an immediate trigger. But I have noticed recently that if I have a high carb meal for dinner, the next day my eyes don't look or feel as good. Having rosacea (my facial symptoms are mild flushing and some p & ps), I started avoiding what they say you have to avoid if you have rosacea-high sugar, spicy foods, citrus, etc. Now, the flushing is almost non existent most days and I think my low carb high protein diet has really helped with that. I don't eat gluten but I don't think gluten is a big issue for me. It came up as a mild intolerance on the test but I avoid it anyway. You're right, the test is pretty expensive. The ALCAT test was not covered by insurance. The more foods you test, the more expensive it is. I was also tested at an allergist using the scratch test method (insurance paid for that) and came up positive for the usual-mold, dust mites, dogs, cats. I try to keep everything very clean and I do have a dog but I'm convinced dogs are not a trigger as I have gone on vacation without her and I wasn't "cured."

[Faith1989]

Do you highly recommend the testing? I really should just get it...I have tried everything else. So most days your eyes are now pretty white?? Mine aren't like really red but they are red enough to bother me and make me self conscious. I am a perfectionist though so this gives me tons of anxiety.

[Peppermint]

I can sympathize because I too am a perfectionist! I can't tell you how many times a day I look in the mirror to see what my eyes look like. Most days my eyes are pretty white now. I actually had a few not so good days this week, and I am going to attribute it to skipping the doxy for two days straight. My inflammation wasn't worse, but my eyes felt dry like they hadn't in months and yet the whites stayed pretty white. So even my "bad" days aren't as bad as they were in the past. I do recommend the test, especially if you've tried everything else. You have nothing to lose (except $ of course), and the information you may get may be what may help you improve the most. You just never know. One thing I did forget to mention when you asked me about triggers is the one trigger I can really tell you makes my eyes immediately go south is anger and stress. It's almost an immediate reaction. I have done a lot of homework to try to keep stress at bay, and I meditate weekly. When I am most relaxed and stress free, my eyes show it. It's hard, because stress is everywhere. Also, like many here, too much tv and reading and not enough sleep will also adversely affect my eyes.
Have you tried doing the cold compresses? They really help with the redness.

[zoe]

eyes getting worse

I can sympathize because I too am a perfectionist! I can't tell you how many times a day I look in the mirror to see what my eyes look like. Most days my eyes are pretty white now. I actually had a few not so good days this week, and I am going to attribute it to skipping the doxy for two days straight. My inflammation wasn't worse, but my eyes felt dry like they hadn't in months and yet the whites stayed pretty white. So even my "bad" days aren't as bad as they were in the past. I do recommend the test, especially if you've tried everything else. You have nothing to lose (except $ of course), and the information you may get may be what may help you improve the most. You just never know. One thing I did forget to mention when you asked me about triggers is the one trigger I can really tell you makes my eyes immediately go south is anger and stress. It's almost an immediate reaction. I have done a lot of homework to try to keep stress at bay, and I meditate weekly. When I am most relaxed and stress free, my eyes show it. It's hard, because stress is everywhere. Also, like many here, too much tv and reading and not enough sleep will also adversely affect my eyes.
Have you tried doing the cold compresses? They really help with the redness.

Hi! Have any of you guys found that warm compresses make your blepharitis worse? My eye doc insists that I must do warm compresses 2 times a day and try to express the oil out. I am on 40 mgs of Oracea also. I find that when I do the arm compresses, the skin on my eyes starts to feel so dry and it burns. I have tried lipiflow(waste of money) gone gluten free and vegan- no luck and just tried the cyclosporine in an ointment which made my eye swollen and one got a stye. I am not able to use petroleum jelly on my lids or they will swell and I get a stye. Any one else have issue with ointments? I have one lower plug and have tried most drops out there. I am running out of ideas and this is very frustrating. I used to also love to wear eye makeup and sometimes can were Blink mascara. My eyes became much worse last year at 46 when I started having hot flashes. Hormone testing showed no testosterone and low progesterone. I am on biodentical hormones now, and I see not difference. My eyes have flared up again and I have been having hot flashes. I wonder if the hormone issue is making this worse. my next step is to ask for testosterone cream for the eye lids or serum drops. Has anyone tried these? Thanks so much!

[Peppermint]

Hi Zoe-
I'm so sorry you are having swelling issues & a stye as well. This whole thing is a huge frustration! And I do believe hormones are playing a huge role. I notice that I am having the best eye days during the first half of my cycle, and then after ovulation things start to get a little crappy. As far as the swelling after the warm compresses go, I now follow warm compresses with a cold compress. I get a bowl and fill it with ice and filtered water, and dip a wash cloth in it and press it against my eyes. I do this for about 5-10 minutes and my eyes look much better. Cold keeps the inflammation down, and it also helps with the redness. Try doing several cold compresses a day and see if it helps with the swelling. As far as the dryness on the eyelids go, I apply Weleda Iris Day cream, both under my eyes and on my upper eyelids. I try not to get close to the lash line. I have no reaction to this cream and it helps to keep the eyelids moisturized. Warm compresses can be so drying (along with the lid scrubs). I have no experience with ointments.

How long ago did you start the bioidentical hormones? It takes many months for your body to adapt and to eventually achieve hormone balance. And you should get your hormones rechecked to see how they are working. I am awaiting results of one I took recently. I am only on progesterone but am very curious to see what my testosterone levels are right now because I have a feeling it will be on the low side. I am very curious about the testosterone cream and would love to try it. I'm also interested in the serum drops. I've only recently heard about them. I'm pretty convinced, and I can only speak for myself, this is caused by 1.hormones 2.stress 3.allergies (food, environment).

I'm curious about your experience with Lipiflow. Did it not help at all?

[Faith1989]

Peppermint, how are your eyes doing? Lemme know! You doing anything new?

[Peppermint]

Hi Faith!
My eyes are holding up. They could be better but I've had 4 straight days of staying up late and wearing eye make up all those nights so they aren't their best but not too bad. Haven't had to use drops at all lately. I'm vacationing in Colorado and have no AC and that has made so much of a difference in the dryness category for me. But with my late nights and makeup, my eyes look smaller than I'd like. Nothing new other than change of location. . How about you? Hope you're having a great eye day!