Please help me with my routine

[unicorn]

Today I'm just back from seeing my optometrist, after 12 weeks of taking 100mg Doxycycline daily, with no noticeable improvement.

My optometrist is kind, patient, and very knowledgeable about dry eye. He checked various things today, inc lid wiper problems (said they were ok), sees no signs of allergy, etc. He still thinks MGD is the cause of my symptoms. I have also developed a small cyst under each eyelid (not chalazia- they are further under the lid), which are irritating esp when my eyes are at their worst. He thinks these cysts are caused by mechanical irritation although I can't find any info about these online.

His advice is to persist with warm compresses (I don't do these very often as they seem to make my eyes sore) and also to squeeze my eyelids to try and unblock the MGs which are capped, rather than blocked, and producing thickish meibum only when pressed very hard. Also to use non-preserved drops much more often that I am currently doing, and to wear sunglasses when outside to protect the eye surface as much as possible.

I did burst into tears near the end as I was telling him just how much this is affecting my life.

Please can someone help me regarding the warm compresses and lid expression - I have always really struggled to know if I am doing it right, and I am so worried about making things worse. How best to express the glands? My eyes get so easily irritated, probably due to ocular rosacea. I find cold compresses provide short term relief from symptoms but obviously they aren't helping in the long term. I use Hylo Forte drops, mostly only once or twice a day, should I use them more often? I have tried Blephasteam goggles in the past but didn't get on with them.

I have also been on an elimination diet for the past 3 weeks - I've excluded dairy, wheat, gluten, and histamine-containing foods. No improvement (so far) - does anyone have experience of how long this might take? It is very restrictive and I can't afford to lose much more weight.

I am so close to total despair in all this.

[littlemermaid]

Unicorn ((hug)) ~ I think you need to be back in the hospital service as well so they can have a look at those 'cysts'. Don't need to see that plonker you saw last time. Check the hospital websites and let's see who else is available in cornea service. Mr Optometrist can refer you anywhere you and he decide is the best, or GP can do it because you need support.

Meanwhile, have you got lubricant eyedrops you're happy with?

Please can someone help me regarding the warm compresses and lid expression - I have always really struggled to know if I am doing it right, and I am so worried about making things worse. How best to express the glands?

Anyone?

[Katewest]

I'm so torn about the manual expression. I read Dr. L's book and think I am doing it properly. I did it every day for about 4 months. My eyes feel a lot better right after but that only lasts 20 min. When I went to see Dr. L last month he said to stop the expressions because I was focusing on my eyes too much. But another member on this site found a study that said expression/lid massages/heat cause corneal damage over the long run.

[unicorn]

^ This is the very sort of thing that worries me - causing more harm than good. Also, my eyes don't really feel good after heat/expression - generally a bit more sore.

Littlemermaid I am using Hylo Forte as the best of a bad bunch - I am soon to get a sample of a new low-osmolarity version of Hyabak. My optometrist did not seem to think a referral to an ophthalmologist would be helpful, he thinks they're all pretty disinterested in dry eye. He didn't seem concerned about the cysts, he likened them to a blister or something you would get from chronic irritation. I am due to be seen again at the hospital in late August for monitoring of my ocular hypertension so I will ask about the cysts then. As for getting my GP to refer me to a corneal specialist - that happened before then on the day of my appointment I was seen by someone else. So I just feel it's pointless to ask again as you never know who you'll see, after waiting 3 months or whatever. I could pay privately to see someone but I am just not convinced this'll do any good. Sorry to sound so negative, it's just my experience has been bad so far.

Anyone else able to help with this gland expression technique, or on food triggers/exclusion diets?

[littlemermaid]

As long as you are being seen in Ophthalmology and have a chance to ask questions, that's great.

Are you on glaucoma drops, because there are preservative-free alternatives they could order for you in hospital pharmacy with these dry eye problems?

Still not sure why you would suddenly get cysts around the eye so if they don't go away, maybe see an Ophth. There's a few bugs it could be, but unlikely. We did get MG clearance on azithromycin for a while too but we are back to chalazia again, warm compresses and careful cleaning.

Our GP suggested phoning ahead to the Eye Clinics to see who's in that day, which works best around 10 to 9am. But, yes, sometimes Cornea Clinic is covered by Mr Locum or Mr New Guy, so we persist if we need to on the basis something is better than nothing, and normally the Cornea Consultant is around. We've also done well with Registrar because they are often more up to date in the literature and we can have a good chat.

Glad you've got the Optometrist though. What a relief.

Anyone else able to help with this gland expression technique, or on food triggers/exclusion diets?

[LaDiva]

Hi Unicorn,
Sorry to hear you are having such a bad time, and I do understand. If you have capped glands, you need to work on moving the oil through the glands. The only way I know to do that is with warm compresses and expression, and it has to be done regularly like clockwork. I do it three times a day for five minutes each time: morning, afternoon and before bed. It is a pain in the ______, but the consistency is what makes the difference. If I skip one session, I have plugged glands the next day. Don't know how else to move the oil without the warmth and pressure. If someone has a better idea, I am all ears. You'll also need to rinse the gunk out of your eyes when done every time, either with saline, or eyedrops. I also use scrubs morning and evening before the rinse. Agree with Mermaid about the cysts. Someone needs to check those out. This isn't the best, but helpful. I turn the Q-tip sideways, and sometimes finish up using the flat of my finger and pressing. http://www.youtube.com/watch?v=c1LLFgdw9Z0 Not too hard, and not too hot! Best wishes to you!

[soaps]

I went on an extreme diet too and lost too much weight. but if i felt better eye wise within a week. I was desperate
Reintroduce everything as it should have made a difference by now but avoid fats processed foods. also maybe cut out sugar a week after - this is usually a big trigger for some. Then start again and every week cut out something and c if it helps if it doesn't then keep on eating it
And not all histamine foods r the same so try one at a time.
You need to eat healthy as otherwise u will give ur eyes less chance of healing. Food isn't a trigger for every one.

See a dietitian if u can. Happy to chat diets if u want

[unicorn]

Littlemermaid I'm not on glaucoma drops - my raised eye pressure on steroids was fortunately very brief (if very extreme) and I am now at the 'high end of normal' pressure-wise, as I was before going on the steroid drops. Just phoned the hospital to check and my appt is 26th Sept - rather a long wait still, but at least I will (hopefully) have a chance to ask questions, esp re these cysts - I have had one of them since January and the other has appeared in the last couple of weeks. I really can't find any other info on these being caused by dry eye so I am quite worried and I will talk to my GP about them too.

LaDiva thank you for that video - helpful. Similar to the way I've been doing it - but like I say my eyes just seem to get sore after this and/or warm compresses, so I have not done it consistently. So much conflicting advice on how often to do it - you say 3 times a day, others say they get worse if they do it more than once every 4 or 5 days. Also - this really worries me: http://dryeyezone.com/encyclopedia/mgcare.html - damaging the glands permanently by over-expression. It does make sense that if you squeeze all the oil out of there, there won't be any more for a while.

Soaps, I would have thought I would have seen a difference by now, if diet was a factor, but who knows? I have seen a dietician, she knew nothing about rosacea, but I have finally discovered that on a lactose-free diet my stomach problems (which have plagued me for over 10 years) have got about 90% better (didn't affect my eyes though!). My diet is healthy and well-balanced, according to the dietician - I rarely eat anything processed and have very little sugar. The only reliable triggers I have identified over the years, for my facial rosacea, are heat, stress and alcohol. So, if my eyes follow the same triggers, this would explain why I'm in a bind with the warm compresses, and why being so stressed over my eyes is creating a vicious cycle. Hard to break.

Finally a question about lid hygiene - are you supposed to clean the lid margins? Dr L in his book says to clean only outside the lashes, and says 'do NOT clean inside the eyelid'. Inside? Does that mean lid margins? Ugh, so confused.

[spmcc]

I have facial and ocular rosacea. My facial rosacea reacts (like yours) to heat, stress, and alcohol. I've also noticed I react to the foods listed here on the National Rosacea Society (NRS) webpage: http://www.rosacea.org/patients/materials/triggers.php

I also try to be mindful of the triggers listed in Frank Powell's book 'Rosacea: Diagnosis and Management' (2009). He says:

Foods and Drinks Likely to Cause Flushing

* Hot foods (especially in large quantities)
* Spicy foods (especially chili peppers and histamine rich foods)
* Hot drinks (tea, coffee, hot water)
* Won ton soup (monosodium glutamate)
* Coffee or caffeine containing drinks (or caffeine withdrawl)
* Alcohol (espcially if alcohol dehydrogenase deficient)
* Fruits (especially lemons)
* Vegetables (mushrooms and histamine rich)
* Meats (Sodium nitrite in frankfurters, bacon and ham and histamine rich)
* Fish (histamine/cigua toxin)
* Dairy products (cheese and chocolate and histamine rich)

Histamine-Rich Foods and Drinks

* Cheeses (Parmesan, blue, Roquefort, Monterey Jack)
* Vegetables (eggplant, spinach, tomato)
* Meats (salami, chicken, chicken liver)
* Wines (Chianti, Burgundy)

When I saw the list in Frank Powell's book, I took the book to my mother and asked her what I could eat. We both stared at the page for a long time and finally realized that carbs (breads, pasta, rice, sugar, etc.) aren't on the list. That's pretty much it . So, I focus on the NRS list which is easier to follow.

[LaDiva]

Amen, spmcc. You can also add any food with any kind of additives. That leaves, as you have said, just about nothing. Actually, it leaves chicken, turkey, most veggies, some nuts, low acid fruits, gluten free crackers, rice and yams. I have considered taking my own food when I am invited to parties as it isn't worth the payback of eating what is served. I dream of cupcakes.

[spmcc]

It's crazy... I dream of curry! Unfortunately, everything with a strong taste or "tang" is out. I know "plainer is better".

I forgot to mention that Brady Barrows' Rosacea Diet is anti-carb. So, if I combine diets from NRS, Powell, and Barrows, I eat air, I guess !

I heard that the best meal for rosacea is wild (not tinned) salmon, yams, and carrots. And you can slather on the butter too. I just can't have that for every meal.

[soaps]

Lol yes i eat same meal every day. i crave cakes and a good burger. but possible flare up not worth it.
Now Im challenging this extreme diet. my dietitian says there is very little evidence for rosecea food trigger but she is working with me to add a new food every week if no side effects. also adding diet supplements to maintain weight .

Try rice flour for cakes.
I think sweet potato is nice sugar trick.

Yes i flare up if my plate is hot and near my face. so i end up eating cold

[LaDiva]

LOL! I crave curry too. Think it can be made without mustard and hot components, but I haven't tried it yet. Here is Alton Brown's basic curry recipe. Just take out the mustard and cayenne: http://www.foodnetwork.com/recipes/a...ipe/index.html

It can be done, I think, so good news spmcc! I'll try rice flour for cakes, thanks soaps. It is the icing I am after! An added thought, Stevia is OK and I only buy organic when possible. Food effects more than just my eyes and rosacea, it zaps my whole body. Not sure what that is about. I have a newly found distrust of additives and genetically processed foods. Hope this is helpful unicorn.

[spmcc]

my dietitian says there is very little evidence for rosecea food trigger

This is strange. I assume she agrees that thermally hot and spicy foods trigger rosacea (i.e., cause flushing)? For me, I react (flush) just as quickly to lemons, vinegar, strong cheeses, some tomato dishes and more. On the other hand, my reaction may be a little delayed with foods like avocado, yogurt, and more.

I kept a diary for half a year. Here is a copy just in case it could be useful: .

I figure that every time my face burns with a flush my eyes are getting worse. My diagnosis is ocular rosacea so I assume that's a logical assumption.

Thanks for all the yummy food ideas, LaDiva and Soaps.

Yes, I hope some of this helps you, Unicorn.

[littlemermaid]

Finally a question about lid hygiene - are you supposed to clean the lid margins? Dr L in his book says to clean only outside the lashes, and says 'do NOT clean inside the eyelid'. Inside? Does that mean lid margins? Ugh, so confused.

We use warm/hot water flannel washcloths for a steamy fast clean in a hurry eg shower (one use only, sterile as possible, hot washed to kill bacteria). A good clean is warm/hot water (boiled if the eyes are sore or infected) with cotton wool balls (one each eye), being careful to clean under the lower eyelash line too. Then, after a close look, if there is debris, we use warm/hot water and cotton buds around the eyelash follicles.

This is with a view to hygiene really and hoping to keep everything good. Also prevent bugs moving in.

We have been dealing with a bit of seb derm and acne, so we have been using a tea tree oil shampoo dilute 1:50 in case of bugs according to doc advice. This has been OK with the rosacea and we've avoided getting sore and sensitive (TTO is harsh) because we used it daily for 2wk and then tapered to maybe once/twice a week. We also use anti-dandruff shampoo on the hair occasionally which trickles over the face and I think that does more good than harm (antifungal) for this teenage skin type, being careful not to get sensitive to the harsher ingredients.

I think Dr L means not to clean inside the eyelid or mucous membranes. That means cleaning the skin around the eyes and going as far as carefully along the eyelash line, being super careful along the eyelid margins. There are oily, sweat and other glands along the eyelid margins, so it's about making sure that's all good. The docs are happy as long as they don't see debris along the eyelid margins and around the eyelash bases in the ophthalmoscope.

Maybe this is not needed for you, Unicorn, because of skin type. There's a lot to be said for not poking about more than is useful, as your wise optometrist says. Do you have dry skin? Do you have a rosacea flush? What happened with the Blephasteam goggles?

It seems that like allergy or food intolerance, everyone's rosacea triggers are different and, as everyone says above, it's about noticing what's happened after certain foods, chemicals or circumstances. Eg carbs, sugars, tomato sauce and red meat are triggers for LM, and she's fine with a mild curry. I think it depends what you've grown up on because one lady told me her teenage son's triggers are orange juice, tomatoes and strawberries.

The NHS website used to suggest 3m for exclusion, then slowly reintroduce one by one. http://www.nhs.uk/Livewell/Allergies...odallergy.aspx Allergy UK is good on this http://www.allergyuk.org/index.php and there's a section on intolerance and sensitivity recommending 6wk of exclusion.

Important to distinguish different types of rosacea. We are dealing with chronic acne rosacea with various prescription antibacterials and moisturisers just to keep control. The 'ocular rosacea' diagnosis is being used to describe sensitive eyes (type IV hypersensitivity) to various things in modern life. People are saying (rosacea forums) it's useful to think of it as a type of allergy and work out triggers, whether it's eg tap water, cat, nickel in spectacles, skin or hair products, detergents, perfumes, dust. Is this more like your experience Unicorn?

On the exclusion diet, have you replaced the carbs with others so as to keep healthy?

Anti-stress and not getting overtired seems to help us a lot. It's about remembering to have fun, sometimes. Do you have eye pain from inflammation, Unicorn?

Since rosacea seems so gut-related, has anyone had good results from taking probiotics?