I'm so miserable.

[Jahcpa]

I've been lurking and reading around here for awhile, but I am a fairly new registered patient. I'm so miserable. I can no longer drive, walk with my eyes open, or do most anything with my eyes open. I can't go outdoors.. I've tried all the OTC stuff, restasis, steroid drops, serum drops, punctual plugs, doxycyclene, prose lenses. Nothing helps and the scary part is it just keeps getting worse. I've recently had my 3rd IPL treatment. Though the doctor says she sees much improvement - I do not notice improvement in my symptons. I've been diagnosed with mgd and ocular rosacea. Can anyone help? Is there any new stuff out there. I'm so depressed and feel I am losing hope.

[nori2015]

Keep at it. I've read people here having to go through many ipl sessions before they notice anything. Don't lose hope, there's always something new to try. We're all going to fail many times before we find our cure, or at least, our improvements. But we'll all get there eventually. Increase your water intake, take your vitamins, use your compresses and carry on with the Ipl. One day at a time. This time next year things may be very different, I'm praying that all of us get relief soon.

[LaDiva]

I have MGD, Ocular Rosacea and tear deficiency. I feel your pain jahcpa. If you are not already experimenting with diet, you might want to give it a go:

Rosacea food list: http://www.rosacea.org/patients/materials/triggers.php
Histamine food list: http://www.michiganallergy.com/food_and_histamine.shtml

You might start feeling better as your eye surface heals. If it was compromised and your eye doctor sees improvement to the lipid layer, it is possible it might take awhile before you notice a difference. You will feel better but it might take more experimenting. Food is a huge factor for me. Sending good wishes.

[Jahcpa]

Keep at it. I've read people here having to go through many ipl sessions before they notice anything. Don't lose hope, there's always something new to try. We're all going to fail many times before we find our cure, or at least, our improvements. But we'll all get there eventually. Increase your water intake, take your vitamins, use your compresses and carry on with the Ipl. One day at a time. This time next year things may be very different, I'm praying that all of us get relief soon.

Non2015 - would you be able to point me to some of the people you mention that have gone through IPL many times before they noticed a difference. I've looked high and low for such people and cannot seem to find them. I would love to PM some of these people. Any help would be appreciated.

[LaDiva]

IPL did help me. It raised my TBUT from 3 to 8, but that is still not enough to be comfortable. My problem was that I also had tear deficiency. If you do not have a problem with your tears, the outcome is most certainly better than mine. I was treated by a doctor at Stanford who has done many IPL treatments. He said that he has had very good luck with people who are not tear deficient, and that IPL also helps people with Rosacea. The things which have helped me the most are warm compresses, expression, goggles, plugs, lid hygiene, Omegas and diet. I'd like to have my glands cleaned out again, and am thinking of either more IPL or Lipiflow. I've had severe dry eye for six years. Compresses and expression play a huge part in maintaining some level of comfort and keeping the glands active. This must be done consistently or it doesn't work. I must do this three times daily or my glands become completely plugged, and have found it more effective if I use compresses for 10 minutes each session. I am truly sorry you are feeling so miserable, and have been there myself. It is a full time job catering to to our eye problems and it can be time consuming. Are you doing compresses and expression as part of a daily routine? If you are not, the glands will again become plugged.

[MGD30]

Jahcpa,

Have you tried moisture chamber glasses? A good fitting pair can do wonders. Before I got them I couldnt do any of the things you listed like going outside either; now as long as it isnt windy I can. it was by far the single pain treatment which has helped me the most. A humidifier helps too.

As LaDiva said, keep maintaining your glands with warm compresses even if it isnt immediately helping with your pain. Even after fixing/ improving your glands, your nerves can still be oversensitive or misfire causing pain. If you break a bone and the doctors put it back together, it will still hurt for a while, but it must rest in a cast, meaning your eyes must be protected while they heal. Some people do not realize this so they think that IPL or Lipiflow did not help them at all but in fact these treatments treat your meibomian glands, not your pain directly.

Do you know what the cause of your MGD/ rosacea was? Knowing the cause of your MGD is very important to keep the glands form getting blocked again. Some common causes are medication, partial blinking, sleeping with your eyes open, allergies and hormonal imbalances.

[Murphy321]

I have severe MGD and was unable to work, drive or wear normal glasses for over 6 months before treatments started working. I get my glands expressed every and lid margins cleaned my my optomotrist every couple momths and do the hot compress daily with omega and lotemax once a day. It takes a long time to get the glands functioning and so once that happens maintenance is crucial. There are very few optomologiats that understand how to treat severe MGD. Finding a good doctor is half the battle. The first optomotrist i saw did lipiflow and it didnt help. I later found out it didnt help me cause my glands were all blocked.

[Jahcpa]

I so appreciate everyone's input. I do use moisture chamber glasses. I can't even bear to walk to the car unless I have them on. But even so they tend to bother me. I use hot compresses 3 o4 4 times a day. Some days it is the only time my eyes feel tolerable. No one seems to know the cause of my rosacea. It could be my age, my light complexion, or even sun damage when I was younger.

I go to the Kellogg Eye Center at the University of Michigan. They no longer perform Lipiflow as they did not find it helped many people. They have had much success with IPL - but so far not with me.

[MGD30]

IPL did help me. It raised my TBUT from 3 to 8, but that is still not enough to be comfortable. My problem was that I also had tear deficiency. If you do not have a problem with your tears, the outcome is most certainly better than mine. I was treated by a doctor at Stanford who has done many IPL treatments. He said that he has had very good luck with people who are not tear deficient, and that IPL also helps people with Rosacea. The things which have helped me the most are warm compresses, expression, goggles, plugs, lid hygiene, Omegas and diet. I'd like to have my glands cleaned out again, and am thinking of either more IPL or Lipiflow. I've had severe dry eye for six years. Compresses and expression play a huge part in maintaining some level of comfort and keeping the glands active. This must be done consistently or it doesn't work. I must do this three times daily or my glands become completely plugged, and have found it more effective if I use compresses for 10 minutes each session. I am truly sorry you are feeling so miserable, and have been there myself. It is a full time job catering to to our eye problems and it can be time consuming. Are you doing compresses and expression as part of a daily routine? If you are not, the glands will again become plugged.

Hi La Diva, you seem to have polished your routine and techniques over time, Im curious as to the specifics, Im always looking to improve. I'll post mine in case anyone is curios.

Have you had Lipiflow in addition to the IPL in the past too? Did you notice any differences, ie. did you monitor your glands to see the consistency and amount of oil that was being expressed? I noticed that after my first treatment of Lipiflow, that my glands were still clogged and expressing solid oil but I got a second treatment about 2 months later and for the first time since my dry eyes started I was producing non-solidified oil. I have not had IPL.

What kind of compresses do you do? I believe the ones that work best for me are using hot water and a micro fiber towelette. I pour hot water and reapply every 2-3 minutes making sure not to put any pressure on the eye (total 10-15 mins). This has the advantage of keeping the source constantly hot and also having the water which has a high rate of energy transfer compared to the baggies. The disadvantage is that its kind of a hassle so most of the time I still do the baggies but with a wet piece of cloth on top. I do them once daily.

What kind of expressions do you do? I pull my eyelid up and pinch it making sure not to apply pressure on the eye. I do these after every compress. Also every so often I will do it with a q-tip because it allows me to put more pressure and I have a few glands (the same glands every time) in one of my eyes that constantly get blocked especially if I skip warm compresses. This is how I know that warm compresses do help.

What do you do as far as lid hygiene? This is where I need to improve. I do scrubs with mineral oil to clean dead cells and anything else, but I do it rarely.

[Jahcpa]

I use Medi Beads for hot compresses. They stay hot for 10-20 minutes. They conform nicely to your eyes and they are hands free - I wear them all the time in the car (as a passenger of course). My doctor first put me onto them - but they are available on Amazon.

[LaDiva]

I've had IPL and not Lipiflow. If you are not tear deficient, IPL is likely to help you. If you have Rosacea, IPL is likely to help you. Everyone is different, so you won't really know until it is over and done. I have tear deficiency, so my outcome was not as good as people with no tear problems. I do monitor the oil. It changes in look and consistency and is generally linked to what I eat and whether or not I am doing everything else listed in my last post. It sounds like your oil is improving.

I went to UC Berkeley school of ophthalmology to get my schleral lenses and while I was there, learned that they have a dry eye division. They do Lipiflow and meibography. The doctor said it would probably be a good idea to have my glands cleaned out, and perhaps consider taking out some of my punctal plugs. I've not done this yet, but am considering the possibility. She told me to use Tranquileyes, as they maintain a prolonged heat for a greater amount of time. I am still using a rice baggie, and also have the Medi Bead compress you mentioned. I think the Beads work better than the rice baggie. The UC doctor also told me to rotate around the eye for expression. I was told to pinch the skin gently between thumb and pointing finger and roll the fingers gently back and forth for about 10 seconds all the way around each eye. This averages out to about three pinches for each upper lid and three for each lower. I use Ocusoft scrubs in the morning and at night, and have tried everything, including baby shampoo. Wet washcloths chafe my lids as does baby shampoo. Everyone is different. Bottom line, I've got to do regular compresses, expression and scrubs or my eyes are a real mess. You might consider doing compresses at least twice a day if not more and definitely use scrubs. If I don't use scrubs, I get eye infections. Increasing frequency and time has helped me quite a bit, and the scrubs make my eyes feel much better. Everyone is different.

Modifying my diet has been a huge help, and also makes a big difference. I avoid most of the foods on the Rosacea food list and also the histamine food list posted above. When I choose to drink wine or eat ice cream, I know that there will be a price to pay for four or five days after the fact. Everyone is different. Best of luck to you.

[meibomian]

If someone has MGD, punctal plugs will likely worsen his/her symptoms and need to be removed. And after removing the plugs, the lacrimal system needs to be irrigated to evaluate for anatomic obstruction. Even if there's no anatomic obstruction, the lacrimal irrigation will improve any physiologic obstruction whereby there's decreased flow even without any true physical, anatomic barrier to flow. The eyelids need to be cleaned with some mild soap/water (avoid baby shampoo which will dry out the skin too much) and with some dry eye wipes (some work better than others). Don't overdo the eyelid wipes. Once a day is good since doing too much eyelid scrubbing will cause cracking, abrasion, and irritation of the eyelids. One should add a short course of topical prednisolone acetate (assuming there's no contraindication to steroid use) twice a day for no more than 1 wk to calm down the inflammation associated with MGD. For warm compress, simply close the eyes while in the shower, let the warm water strike the forehead and roll down across the closed eyes for 2-3 minutes. Most MGD sufferers who are recalcitrant to treatment will generally have a lacrimal obstruction, and if there are punctal plugs in place, then this is likely the primary cause for the obstruction. One should feel an immediate improvement after the lacrimal irrigation. The lacrimal system is often discounted when evaluating "dry eye" symptoms but it plays a vital role in the pathophysiology of dry eyes. Your lacrimal system may be blocked even if there's no epiphora, or excessive tearing that run down the face.

Here's why the tear ducts and lacrimal system are so important. Tear is obviously comprised of more than just water. There are a lot of other "solutes" in tear, like lipids, mucin, salts, inflammatory mediators, etc. However the only component of tear that can leave the eye via evaporation is water. All other components in tear are cleared through the lacrimal system. If the lacrimal system is blocked, the water portion of tear still leave the eye through direct evaporation. The other solutes in tear can't be cleared. You then have a massive increased in concentration of inflammatory solutes that can cause the typical, burning, redness, and pain associated with dry eye symptoms - this is why simply flushing the eye with lots of saline bring about immediate relief for 5-10 minutes until the inflammatory solutes build up again. It would also be expected that there would be conjunctivochalasis, or redundant and inflamed conjunctival tissue overlapping and blocking the lower lacrimal punctum in the setting of nasolacrimal obstruction. You have the classic cascade of one bad event leading to another one. Hope this explanation provides some clarity and insight into why some dry eye sufferers can continue to have symptoms despite multiple treatment regimens. As always, this is not meant in any way to provide medical advice and you should always consult your eye doctor for your specific needs.

[charlotte88]

Hi Jahcpa
I'm really sorry to hear that you are having so a bad time. I suffer from blepharitis which has also been terrible. Recently though I bought a product I use to clean my eyes with and afterwards I apply a cleansing gel which have worked wonders. My bleph would cause my eyes to crust up which in turn would make them sore and dry, but since using the gel I haven't had this problem in a couple of weeks now which is such a relief. I bought it on site called styleandclean maybe this can help you. In any case don't give up, there are always more options to try.

[MGD30]

If you someone has MGD, punctal plugs will likely worsen his/her symptoms and need to be removed.

What you wrote is very informative and makes a lot of sense. I have all four of my punctal plugs in (two at a time) and I never felt a benefit from them. I was and still am worried about infection because there is always mucous build up that I am wiping away with my hand, so I was not a big fan from the beginning. Obviously my doctor thought it was a good idea since he inserted them. Do you have any literature I could show him that might convince him otherwise?

[meibomian]

There's an endless amount of literature discussing what can be done for dry eye treatment but there's surprisingly very little talk about what should not be done, other than the usual don't stare at the computer screen for too long or avoid drugs like scopolamine (that patch you wear on a cruise to avoid sea sickness can dry out your mouth and eyes - and make your eyes blurry). There's almost no literature on avoiding or removing punctal plugs in the setting of MGD. Many eye doctors still recommend plugs once the inflammation has subsided, but this becomes a logical paradox since if there's MGD, then there's inflammation.

The analysis of why punctal plugs won’t help improve MGD-associated dry eyes is really just a thought experiment that relies on fundamental rules of nature – the law of conservation of mass comes to mind. Thought experiments are timeless and help us better understand our world without incurring much risk or expense. Even in the 21^st century, we often overlook and discount the obvious. Another “obvious” observation is that the disease mechanism for dry eyes caused by meibomian gland dysfunction (MGD) is almost identical to that of another very common disease which eye doctors don’t think much about but dermatologists do. It’s acne! Acne is local clogging of oil glands that lead to inflammation and infection. Sounds familiar to what occurs with the meibomian gland as well. Under a slit lamp, clogged oil glands on the eyelids look just like white heads. Significant inflammation and infection of these meibomian glands can lead to styes, chalazions, and local infection of the eyelids, just like what happens with acne on the face. Guess what the treatment for dry eyes and acne is? They’re almost identical - steroids, antibiotics, and cleansing. There are of course treatment differences since Restasis is not used on the face and Aczone (and almost all acne prescriptions) is not used on the eyes. Imagine if there’s something that would work for both?

Feel free to PM for questions. I love helping dry eye sufferers conquer their condition and am on a quest to alleviate this problem in as many people as possible.