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Thread: Rosacea / Ocular Rosacea - any help would be appreciated

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    Default Rosacea / Ocular Rosacea - any help would be appreciated

    Hi Guys

    I am new to this forum and exploring the extremely confusing world of Rosacea. Having read so many of your posts and threads and seeing how useful hearing about all your experiences are I thought it was about time I wrote something in the bid to understand the condition better and what I should try to help me.

    I was diagnosed about a year ago with Rosacea by my extremely lazy GP though i am still unsure whether or not the diagnosis is correct due to him not even looking at my face and straightaway saying it was Rosacea as i am a woman in my early 30's and have rash like symptom on my cheeks. I do see his logic but with so many slight variations and conditions that are similar its hard to know if he is correct without trying to rule out other conditions like contact dermatitis. I am currently in process of trying to track down the best Dermatologist in London to actually get a definite answer on it. Any London based people out there who knows a decent one trained in Rosacea treatment? Also has anyone else ever confused Rosacea with another condition or allergy and how do you know for sure?

    He started me on Metronidazole Gel (hope i spelt that right ;)) which after 4 months did nothing obvious to my face other than drying it out and making my eye sting. I am now (on the back of forum posts and articles on the internet) trying out Mama Nature Proskin Rosacea cream which is an all-natural tea tree oil application. It is ok and has made it very slightly better but the raised red bumps have not really changed drastically.. some people though state it’s a miracle cream so definitely worth a try if no one reading this has tried it… bit pricy though but you get a big tub.

    Also for the last 6 months I have been suffering with itchy eyes which after reading up I am assuming must be the start of Ocular Rosacea which is really worrying me as I have read it can end up with vision impairment if left untreated (completely freaking out about that!). I have no idea really how to treat it for the best. Can anyone give me any ideas of what has worked well for you on this? Would majorly appreciate the help so I stop worrying so much about it.

    Thanks so much and sorry for the length of this thread.

    cx

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    Senior Member Nadine's Avatar
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    Hi Fiery, and welcome! This community has been invaluable in helping me hone in on a solution to my issues, and I hope it will be for you as well. Glad you found us.

    Quote Originally Posted by Fiery View Post
    I do see his logic but with so many slight variations and conditions that are similar its hard to know if he is correct without trying to rule out other conditions like contact dermatitis. I am currently in process of trying to track down the best Dermatologist in London to actually get a definite answer on it. Any London based people out there who knows a decent one trained in Rosacea treatment? Also has anyone else ever confused Rosacea with another condition or allergy and how do you know for sure?
    Being in the States I can't help you with a local recommendation but I can say yes, many people have confused rosacea with other conditions, and you are wise to seek out a knowledgeable specialist. It will be good to educate yourself a little before your visit so you can ask informed questions and better assess the treatment you're getting. See "similar and co-existing conditions" section of the forum: http://www.rosaceagroup.org/The_Rosa...ing-conditions

    Also for the last 6 months I have been suffering with itchy eyes which after reading up I am assuming must be the start of Ocular Rosacea which is really worrying me as I have read it can end up with vision impairment if left untreated (completely freaking out about that!).
    Ok, first of all, no need to freak out; there are lots of things you can do and I think it would have to progress pretty far before you had permanent vision loss. Actually I've never heard of that happening to anyone, but I just googled it and I see some hits did come up (including some scary ones talking about how it has to be treated "immediately"). As a long term ocular rosacea sufferer (dx around 1996) I would say permanent vision loss hasn't even been on my radar. What's more concerning is the immediate discomfort it can cause, which does include blurred vision due to the tear film being disturbed. But even that goes away once the irritation is cleared up.

    It can also lead to all sorts of fun surprises, like styes, chalazions, and jut generally yucky, swollen eyelids, bloodshot eyes, itching, burning, watering, etc - not fun.

    I have no idea really how to treat it for the best. Can anyone give me any ideas of what has worked well for you on this? Would majorly appreciate the help so I stop worrying so much about it.
    Have a browse through the ocular rosacea (also called "subtype 4") section of the forum, where you can read all about others' experiences: http://www.rosaceagroup.org/The_Rosa...Ocular-Rosacea

    I can also add my 2 cents. I had an ophthalmologist several years ago who gave me various drops and ointments and recommended warm compresses, none of which seemed to help, and eventually I ended up with a chalazion so persistent I let the doc give me a kenalog injection in my eyelid, and I can tell you that is NOT an experience I ever want to repeat. Nowadays they have a treatment called lipiflow which sounds better, but still sounds a little extreme considering what I've since learned about managing my condition.

    Unfortunately there's really no quick answer other than to learn as much as you can about how these different conditions/symptoms interrelate, and how they can have different causes in different people. In my case, my ocular rosacea symptoms have cleared up as I've addressed my overall systemic issues stemming from a combination of past antibiotic use and periods of poor diet (too much sugar, which isn't good for anyone, but I seem particularly sensitive to it). I've also used some topical approaches, but I hesitate to go into that here as you don't seem to have eyelid involvement (yet?).

    But in the short run, I've been helped by warm epsom salt compresses, especially when my eyelids were getting irritated (frequent styes, etc). Others have found the warm compresses irritating (to rosacea-inflamed skin around eyes), but have been helped by cool compresses. That might be true for you since you just have the itching and don't seem to have the swelling and eyelid issues (which may come later). You might also look into dry eye and see whether something in your environment (computer screen, for example) might be aggravating it.

    My objection to the compresses was always that docs recommended doing it multiple times a day, and I was in an intense professional setting where that just wasn't workable. Now I'm self employed and it's more doable, but still - with compresses I always felt I was fighting a losing battle, constantly trying to keep my condition from getting too severe. My best results have come from getting more educated, connecting the dots among my various symptoms, and treating myself as one system rather than eyes / face skin / hair / headaches / digestion and all my other symptoms as separate. I've been to a lot of different practitioners (traditional MDs, holistic practitioners, chinese medicine) and I can say NO ONE has helped me as much as taking things into my own hands with the help of this board and the information I've found through it.

    Best of luck to you!!

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    Hi Nadine

    Thank you so much for taking the time to reply to me on my long message! It feels so nice not to be alone in this... my friends reaction is always " it looks fine to me" which isn't very helpful when you look in the mirror and thats all you can see. I am sure all of us feel like that.

    Yeh you are right.. so far the itchy eyes is the main issue i have though my eyes do feel a bit puffy in the morning so maybe compresses would help with that. I also work in a stressful office and there is no way i could just do compresses throughout the day like that. I am hoping as you said that maybe there is some issues with my digestive system that are making everything worse as there does appear to be some link between the two areas. Someone in another thread stated that having a Yakult a day really helps so i started that this morning. Also trying the evening primrose oil that someone else recommended... you tried either of these?

    Do you use any eye drops for your condition? apart from the compresses how do you personally treat it? I presume there is an element of putting up with parts of it and accepting it.

    Thanks again.. you have really made me feel better about the whole thing

    x

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    Senior Member Nadine's Avatar
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    I'm not doing the thorough process Poodle recommends (search her posts if you're interested; she's very knowledgeable).
    Ah, I see you're already over on that other thread with Poodle, great.
    Last edited by Nadine; 8th January 2014 at 08:53 PM. Reason: Formating and minor edits

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    Senior Member Nadine's Avatar
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    And if anyone else has thoughts or feedback for Fiery, please chime in! I don't mean to hog the thread.

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    Senior Member Nadine's Avatar
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    Oh NO!!! I wrote you a mega-response, then tried to add a quick PS referencing the line about Poodle, and accidentally edited my previous post, deleting all but that one line!



    Crapola!! Will try to reconstruct.

    Quote Originally Posted by Fiery View Post
    Hi Nadine

    Thank you so much for taking the time to reply to me on my long message! It feels so nice not to be alone in this... my friends reaction is always " it looks fine to me" which isn't very helpful when you look in the mirror and thats all you can see. I am sure all of us feel like that.

    Yeh you are right.. so far the itchy eyes is the main issue i have though my eyes do feel a bit puffy in the morning so maybe compresses would help with that. I also work in a stressful office and there is no way i could just do compresses throughout the day like that. I am hoping as you said that maybe there is some issues with my digestive system that are making everything worse as there does appear to be some link between the two areas. Someone in another thread stated that having a Yakult a day really helps so i started that this morning. Also trying the evening primrose oil that someone else recommended... you tried either of these?

    Do you use any eye drops for your condition? apart from the compresses how do you personally treat it? I presume there is an element of putting up with parts of it and accepting it.

    Thanks again.. you have really made me feel better about the whole thing

    x

  7. #7
    Senior Member Nadine's Avatar
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    Ok. Attempting to reconstruct my previous response, which was long, but worth rewriting I think.

    Quote Originally Posted by Fiery View Post
    Hi Nadine

    Thank you so much for taking the time to reply to me on my long message! It feels so nice not to be alone in this... my friends reaction is always " it looks fine to me" which isn't very helpful when you look in the mirror and thats all you can see. I am sure all of us feel like that.
    What friends and loved ones don't understand is that these conditions are not just about appearance - they can also be very physically uncomfortable or even extremely painful for some! And besides, even if it is "just appearance" - anyone who is moderately pleasant looking and hasn't suffered with significant skin problems, weight issues, or other visible disfigurement just can't understand how personally and professionally debilitating it can be to just...not look "right" in the eyes of the world. It's not the same as being discriminated against for race, gender, or disability, but it can be limiting, more so than many perpetually pretty-looking people might realize. I know...I used to be one of them.


    Yeh you are right.. so far the itchy eyes is the main issue i have though my eyes do feel a bit puffy in the morning so maybe compresses would help with that. I also work in a stressful office and there is no way i could just do compresses throughout the day like that. I am hoping as you said that maybe there is some issues with my digestive system that are making everything worse as there does appear to be some link between the two areas. Someone in another thread stated that having a Yakult a day really helps so i started that this morning. Also trying the evening primrose oil that someone else recommended... you tried either of these?
    Ok, first the Yakult and the evening primrose.

    As for Yakult...I'm sorry to say, I don't recommend it, and here's why. First, the reason Yakults might be good for you is that they contain probiotics. (More on this below.) The reason they may be bad is that they contain a LOT of sugar. (More on this below too.)

    Now I don't personally have experience with evening primrose oil, but my understanding is that it is supposed to have antifungal properties...which may be helpful for you. There are many foods, supplements, and natural topicals that have this property, and evening primrose is one of them, just not one I've tried.

    Ok, so now I'm going to back up a little and sort of give the "lay of the land," as I understand it, as to the relationship among diet, gut health, these skin conditions, and what's going on in your eyes. Then I'll circle back to your specific question about what I'm doing personally.

    (Typing this the second time, I already know you're on that Demodex thread with Poodle, so I'm happy I don't have to be the bearer of the demodex news!! )

    Ok here goes.

    1. I'm convinced that sugar is evil. I can get a little evangelical about this as I'm a relatively recent convert. Brady Barrows recommended a book called Sugar Blues, which I read and found very persuasive. It's a little dated, published in 1975, but everything it says about the evils of refined cane sugar is still true (and now also includes high fructose corn syrup, much more prevalent now than in 1975). Sugar does all sorts of bad things, from encouraging inflammation to promoting the growth of "bad" micro-organisms such as yeasts/fungi, to leading to serious health problems such as diabetes, heart disease, and cancer (interested? Read a book called Anticancer.)

    2. Antibiotics (I took doxycycline for many years as well as other antibiotics), birth control pills (yep, took those for a long time too), and other long-term meds kill the "good" microorganisms that keep the yeast population in check. This creates an imbalance. Fungal and yeast infections throughout the body flourish - seborrheic dermatitis, athlete's foot, vaginal infections, you name it.

    3. Meanwhile, some of us develop a "flush and blush" ("subtype/stage 1" or erythematous rosacea) response that may be auto-immune, neurological, or vascular. The causal relationships are very murky among all these different components, but I'm testing out a hypothesis that in my case, sugar is a major contributor to this response. I think if this gets really bad it can take the form of rhinophyma or subtype/stage 4 rosacea - but that piece I'm less familiar with, since I haven't dealt with it personally.

    4. Some say the unhealthy skin (caused by fungal overgrowth or the auto-immune/vascular process described in #3 above) creates an environment where demodex mites proliferate. Others say the demodex irritate the skin and cause the rosacea symptoms. Along with many others, I suspect that demodex is often the culprit when we develop papulopustular (subtype 2) or ocular (subtype 4) rosacea. Then again, fungal overgrowth could be to blame. Fortunately, many substances discourage BOTH demodex and fungi, so it may not even be necessary to know which is running at any given moment for any given person.

    Ok, so now on to your specific question:

    Do you use any eye drops for your condition? apart from the compresses how do you personally treat it?
    I can't believe I'm saying this, but at the moment, the short answer to your question is, "Pretty much nothing." But the longer and more honest answer is a little more complicated.

    A couple of months ago I started treating my papulopustular rosacea on my face (as well as my scalp - that's another tangent) with Prosacea, an OTC sulfur ointment, as well as TTO diluted in argan oil (see itsjustyourface.blogspot.com). TTO is very harsh on the eyes, but I suspected demodex was contributing to my eye condition, so I mixed just a VERY small amount in a base of coconut oil (which I believe I read is both antifungal and anti-demodex - my research is fading in memory now).

    Meanwhile, I also started being very mindful of my diet. I didn't jump onto any strict dietary regimen, just really watched any sugar or high GI foods and tried to keep them very minimal. I also started adding in foods and supplements that seemed antifungal, anti-inflammatory, or just plain good for me. I also started taking probiotics daily.

    Within 6 weeks, my symptoms were 95% gone. Right now I'm just waiting to see if I can maintain it, and also watching my skin gradually become more smooth and my hair fill back in. It's a happy time for my health. If this keeps up, I'll post a full account and call it a success. But the good news is, my eyes aren't really a problem anymore. Sometimes I still feel a slight itch (maybe more at dawn and dusk when the mites come out to play - or maybe that's just my tortured imagination). So I rub coconut oil on my eyelids at bedtime. Sometimes with a tiny bit of TTO, but I always end up regretting that because it burns too much. My next plan, if I need to pursue it further, will be a TTO based eye scrub, or possibly Ocusoft Lid Scrub Plus, which I've heard very good things about.

    But meanwhile I'm just enjoying looking and feeling normal. Now mind you (and this is the part I tried to snip and add to when I had my editing mis-hap) - I'm not going for the total demodex eradication program Poodle is doing. I'm figuring...demodex are probably a part of life for most of us. My goal is to get their population down to a "normal" level while bringing my overall health into equilibrium so I'm not constantly reactive and inflamed. So far, this seems to be working.

    I presume there is an element of putting up with parts of it and accepting it.
    I'm antibiotic free and more symptom-free than I've been in years, so I don't accept that a state of constant inflammation is something we just have to put up with. Now that I see the sugar/antibiotic gut-health-death-spiral I've been in for what it is, I have every hope that I'll get to a happy place where this is a thing of the past for me. I may always need to be a little careful about my diet and lifestyle - for instance, just recently I took penecillin for a week for a dental problem, and little setbacks like that are bound to come. But that I can live with. My previous state of constant inflammation and hopping from one pill or cream to another in desperation...that I'm not willing to accept. Nor should you!! Hang in there and I'm sure you'll get this figured out!

    Thanks again.. you have really made me feel better about the whole thing

    x
    My pleasure!!

    Last edited by Nadine; 8th January 2014 at 10:09 PM. Reason: Formating and minor edits

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    You need to wash your eyelids on a daily basis. It will prevent to agravate the symptoms.

    Me I clean my eyelid every morning and night with cetaphil gentle cleaner. I close my eyes, wash and then rinse.

    Cetaphil is the best cleaner for me. It clean well and doesnt irritate. Ophtalmologist recommend baby shampoo but I dont recommend it because baby shampoo = irritation.

    Maybe some girl cleaner are better but I can't comment...

    Forget about the hot compress its not helping at all and your eyes gon become red. Hot compress are only good for people who have chalazion.

    Antibiotic dont cure blepharitis. They can help if you have a big crisis but they wont cure it. Like blephamide or maxidex.

    The most important thing is the hygiene of the eyelid. Me if I dont wash in less of 24 hour it will agravate badly .

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    Quote Originally Posted by Nadine View Post
    Ok. Attempting to reconstruct my previous response, which was long, but worth rewriting I think.



    What friends and loved ones don't understand is that these conditions are not just about appearance - they can also be very physically uncomfortable or even extremely painful for some! And besides, even if it is "just appearance" - anyone who is moderately pleasant looking and hasn't suffered with significant skin problems, weight issues, or other visible disfigurement just can't understand how personally and professionally debilitating it can be to just...not look "right" in the eyes of the world. It's not the same as being discriminated against for race, gender, or disability, but it can be limiting, more so than many perpetually pretty-looking people might realize. I know...I used to be one of them.




    Ok, first the Yakult and the evening primrose.

    As for Yakult...I'm sorry to say, I don't recommend it, and here's why. First, the reason Yakults might be good for you is that they contain probiotics. (More on this below.) The reason they may be bad is that they contain a LOT of sugar. (More on this below too.)

    Now I don't personally have experience with evening primrose oil, but my understanding is that it is supposed to have antifungal properties...which may be helpful for you. There are many foods, supplements, and natural topicals that have this property, and evening primrose is one of them, just not one I've tried.

    Ok, so now I'm going to back up a little and sort of give the "lay of the land," as I understand it, as to the relationship among diet, gut health, these skin conditions, and what's going on in your eyes. Then I'll circle back to your specific question about what I'm doing personally.

    (Typing this the second time, I already know you're on that Demodex thread with Poodle, so I'm happy I don't have to be the bearer of the demodex news!! )

    Ok here goes.

    1. I'm convinced that sugar is evil. I can get a little evangelical about this as I'm a relatively recent convert. Brady Barrows recommended a book called Sugar Blues, which I read and found very persuasive. It's a little dated, published in 1975, but everything it says about the evils of refined cane sugar is still true (and now also includes high fructose corn syrup, much more prevalent now than in 1975). Sugar does all sorts of bad things, from encouraging inflammation to promoting the growth of "bad" micro-organisms such as yeasts/fungi, to leading to serious health problems such as diabetes, heart disease, and cancer (interested? Read a book called Anticancer.)

    2. Antibiotics (I took doxycycline for many years as well as other antibiotics), birth control pills (yep, took those for a long time too), and other long-term meds kill the "good" microorganisms that keep the yeast population in check. This creates an imbalance. Fungal and yeast infections throughout the body flourish - seborrheic dermatitis, athlete's foot, vaginal infections, you name it.

    3. Meanwhile, some of us develop a "flush and blush" ("subtype/stage 1" or erythematous rosacea) response that may be auto-immune, neurological, or vascular. The causal relationships are very murky among all these different components, but I'm testing out a hypothesis that in my case, sugar is a major contributor to this response. I think if this gets really bad it can take the form of rhinophyma or subtype/stage 4 rosacea - but that piece I'm less familiar with, since I haven't dealt with it personally.

    4. Some say the unhealthy skin (caused by fungal overgrowth or the auto-immune/vascular process described in #3 above) creates an environment where demodex mites proliferate. Others say the demodex irritate the skin and cause the rosacea symptoms. Along with many others, I suspect that demodex is often the culprit when we develop papulopustular (subtype 2) or ocular (subtype 4) rosacea. Then again, fungal overgrowth could be to blame. Fortunately, many substances discourage BOTH demodex and fungi, so it may not even be necessary to know which is running at any given moment for any given person.

    Ok, so now on to your specific question:



    I can't believe I'm saying this, but at the moment, the short answer to your question is, "Pretty much nothing." But the longer and more honest answer is a little more complicated.

    A couple of months ago I started treating my papulopustular rosacea on my face (as well as my scalp - that's another tangent) with Prosacea, an OTC sulfur ointment, as well as TTO diluted in argan oil (see itsjustyourface.blogspot.com). TTO is very harsh on the eyes, but I suspected demodex was contributing to my eye condition, so I mixed just a VERY small amount in a base of coconut oil (which I believe I read is both antifungal and anti-demodex - my research is fading in memory now).

    Meanwhile, I also started being very mindful of my diet. I didn't jump onto any strict dietary regimen, just really watched any sugar or high GI foods and tried to keep them very minimal. I also started adding in foods and supplements that seemed antifungal, anti-inflammatory, or just plain good for me. I also started taking probiotics daily.

    Within 6 weeks, my symptoms were 95% gone. Right now I'm just waiting to see if I can maintain it, and also watching my skin gradually become more smooth and my hair fill back in. It's a happy time for my health. If this keeps up, I'll post a full account and call it a success. But the good news is, my eyes aren't really a problem anymore. Sometimes I still feel a slight itch (maybe more at dawn and dusk when the mites come out to play - or maybe that's just my tortured imagination). So I rub coconut oil on my eyelids at bedtime. Sometimes with a tiny bit of TTO, but I always end up regretting that because it burns too much. My next plan, if I need to pursue it further, will be a TTO based eye scrub, or possibly Ocusoft Lid Scrub Plus, which I've heard very good things about.

    But meanwhile I'm just enjoying looking and feeling normal. Now mind you (and this is the part I tried to snip and add to when I had my editing mis-hap) - I'm not going for the total demodex eradication program Poodle is doing. I'm figuring...demodex are probably a part of life for most of us. My goal is to get their population down to a "normal" level while bringing my overall health into equilibrium so I'm not constantly reactive and inflamed. So far, this seems to be working.



    I'm antibiotic free and more symptom-free than I've been in years, so I don't accept that a state of constant inflammation is something we just have to put up with. Now that I see the sugar/antibiotic gut-health-death-spiral I've been in for what it is, I have every hope that I'll get to a happy place where this is a thing of the past for me. I may always need to be a little careful about my diet and lifestyle - for instance, just recently I took penecillin for a week for a dental problem, and little setbacks like that are bound to come. But that I can live with. My previous state of constant inflammation and hopping from one pill or cream to another in desperation...that I'm not willing to accept. Nor should you!! Hang in there and I'm sure you'll get this figured out!



    My pleasure!!


    Hi,

    You have given me a great in site to this horrid illness.

    My friends think I'm anti social because I don't want to go out to the beach etc - but I'm not. I try to avoid being in the sun as much as possible and as soon as it gets hot (past 26degrees) my face flares up and I have an instant headache. My hands also swell up and I get what you would call 'fluid balls' on them. - Does anyone else get like this?

    I'm going to try a few things that you have done to see if that helps me out.

    The worst thing for myself is my eyes - I have scars from the 'styes'. They have destroyed some of the skin around my top eye lid so my eye lashes don't sit properly.

    I have been taking 'Hair, Skin and Nail' supplements which have given me a little bit of relief. I want to try the primrose to see how that goes.

    My doctors have been no help at all. My GP referred me to a Dermatologist who looked at me once and the said I should start taking oraccatane (excuse spelling) which is NOT happening. He did not want to listen to me about my family history - My dad had similar issues when he was in his late 30's early 40's. Went to our big Hospital over here and had Doctors from America flown over. They came up with 2 options - Lupis or Sweet Syndrome. But its neither of those. He now has barely any issues and is in his late 50's. I don't want to get my hopes up that it clears - Cause thats a long way off for me.

    I think I love this site - so much more information than what a doctor can give.

    Cheers everyone!

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