Help by rubbing eye - Just me?

[Trac]

My non dry eye friends tell me not to rub my eyes. But I find if I completely cover my eyelids with my fingers and press hard and evenly against the entire lid that brings relief. So does pressing and rubbing the entire eyelid as one piece. When I do this I can feel the temperature difference between my fingers and my eyelids, that is always soothing. When I rub my eyes I am often able to move filaments from around my eye to the bottom of my eye and then I can remove it, so it makes sense that that would bring relief. Anyone else find that this happens, or am I just weird?

[MaryVa61]

I'm the same. After years to not rubbing them (doctor's advice) I discovered that when I have the type of filament that is mushy (I guess it's a mucus thread thing), it sometimes helps tremendously to rub a little, with the eye closed. It causes it to become detached from the eye so my upper lid isn't catching on it every time I blink. And cool fingertips on hot lids does feel wonderful. I don't know if it's safe or a really bad idea though.

Mary in VA

[magoo]

I don't rub so much a push on my upper lid to move the filaments (that feel like a hair caught under my eyelid) down to where I can get them out. If I don't do this, then they seem to be there forever scraping every time I blink. I get the "mushy" type and also some that are "hard" - like a hair and they hurt.

[Trac]

I have real issues with my filaments. They are like rubber bands when I try to pull them out of my eye. They stretch real long and often they bounce or pull back into my eye. Then they seem to dry out (once I have tried to get them out of my eye and don't succeed) and feel like shards of glass. Once I get them out it feels better, but then it feels like I have pulled a lot of moisture out of my eyes and my eyes feel drier. Since the filaments usually clump together after I put drops in my eyes I hate to put more drops in after I get the filaments out, which is generally a couple minutes after I apply the drops. I have found that mucomyst really does help dissolve the filaments. I use to pull the filaments out of my eyes every 30-45 minutes, now it is every couple of hours. Oh, I forgot to add, muro drops really helps clump the filaments together.

[MaryVa61]

Magoo-Me too. I get different types of filaments. Used to have to get the opth to cut the hard ones off, years ago when I had SLK. Now I don't know if my hard ones are the same type as those were. Doesn't seem like it. They usually go away in 2-5 days on their own. Mushy ones I can usually get rid of once I realize they're that type. I get immediate relief then.

Trac - I tried compounded mucomyst but the pharm would only give me a 4 day supply and they take a few days. Also they have no pharmacist on weekends. So timing doesn't seem to work out right. Are yours like that or do they last longer than 4 days or what? I don't feel like I really know what they would do if I had them immediately available anytime I needed them.

[Trac]

Mary

I got a month worth of drops, they will probably last me longer. I am suppose to put them in 4Xdaily. I have mine made at leiter's pharmacy in San Jose Ca. They ship all over the US. The only problem is now that the filaments are dissolving sometimes my eyes feel sticky. But it is better than the pain of the filaments in there. Plus it is a little gross always trying to pull the filaments out.

What did you do for your SLK?

Magoo

I think the hard filaments started out mushy and if they sit in my dry eye for too long they become hard and stick and that is why they have to be removed by the doctor instead of by me. Just my theory.

[MaryVa61]

Trac,

SLK is Superior Limbic Keratoconjunctivitis. It's supposedly an "uncommon" disorder and the cause is unknown. Around 30% of people who have it also have a thyroid disorder. It's ridiculously painful until it's gotten under control, which often takes 6 mos (and did so for me). For the 1st 6 mos, my eyes were very red and swollen and I had to see the doc around every 2 weeks to get filaments cut off. There is some dryness with it, lots of Blepharitis and the white upper area of the eyeball under the upper lid (love the techincal terminology, right?) is very red. It can last several years, then go away, or never go away. My current doc thinks mine went away because he hasn't seen me when having spells of the redness in that area, and I don't get that problem often anymore, so maybe he's right. There is also a contact lens related SLK that stops when you stop wearing contacts, but I'm not a contact wearer.

Treatment was Acular drops 2-4 times per day and hourly lubricating drops. I did that routine for around 14 years. They almost did surgery on my lid, right at the 6 month mark, but then my SLK calmed down. A rough surface on the inside of the upper lid can contribute, so they were going to scrape it with surgery.

Had to change eye docs when I developed my additional eye problems because the old one was so fixated on the SLK that he wouldn't believe when I told him there were new, very painful, problems going on. The new docs immediately believed me and eventually figured out the Dry Eye Syndrome and allergies.

Thanks for the info on your drops. Sounds like I should talk to Leiter's about getting a one month supply to try. I'm worried about filaments and folds I get in winter.

Mary in VA

[Trac]

Mary,

It sounds like we have a lot of the same issues. According to my doctor I have severe meibomian gland dysfunction in both eyes, severe dry eyes (schirmer’s test 0 and 0). Superior limbic keratoconjunctivitis both eyes, filamentary keratitis both eyes. blepharitis and rosacea.

I have been checked for thyroid and autoimmune disease, everything came back okay. I looked upu Acular drops on line and saw that they were for allergies and should not be used by people with dry eyes unless directed by a doctor to do so. My doctor tells me not to use any antihistamines unless I absolutely have to, because they will dry out the eye. What kind of lubricating drops do you use? I was using artificial tears, but I got to the point where I was sometimes putting them in every few minutes and it felt like the tears were just washing out anything good that I had in my eyes. I started serum drops in April, that was a big improvement, but it does not seem to be helping as much anymore.

My understanding of SLK is that the covering over the white part of the eye (sclera) is too big and every time I blink the inside of my eyelid irritates it. This causes pain. My doctor wants to take a tuck in the covering, but he wants a second opinion that agrees with him. The second opinion thought my eyes were too dry and I could end up with corneal melt.

I get filaments all of the time. They can be very painful and obscure my vision. I think filaments are caused when defective tears don’t have enough lipid layer and the water portion of the tear dries out, leaving just the solid portion of the tear which attaches to dry spots on the cornea. My doctor often removes filaments, but I also remove them on a daily, hourly basis. The mucomyst does help dissolve the filaments, but it seems to leave my eyes feeling sticky when the filaments dissolve.

How did you get rid of your Blepharitis? Is the Blepharitis caused by SLK? I am currently on 50 mg of doxy. I have tried eye lids scrubs, I think I might have done it the wrong way or too aggressively, as my eye lids almost swelled shut and they got infected. So I have not tried that again. I also on occassion us hot compresses, but they are dry not moist, perhaps I should try hot and moist.

I am sorry for all the questions.

Tracy

[MaryVa61]

Hi Tracy. Our problems to sound very similar! No wonder I found myself answering more of your posts than anyone else's. I don't mind all the questions. We can learn from each other. I suspect that all of my eye problems are related. My doctors know I have some undiagnosed systemic disorder, but say it's something rare, probably genetic and that we may never know what it is. They recently ruled out Sjogren's, now suspecting some form of Ehlers-Danlos or something similar.

I had a lot of trouble with the Blepharitis for years, but eventually a couple things really helped a lot. A doc told me to quit trying to use a washcloth and diluted Johnson's Baby Shampoo. She had me just wet a Q-tip with very warm water and gently wipe each lid margin area around 6 times, twice per day. And now I know I'm allergic to an ingredient in Johnson's BS! The scrubs started working even better when I started wetting the Q-tip with Unison-4 and then applying Ocusoft Plus foaming lid cleanser to the Q-tip. After I apply a dab of the foam, I shake most off so foam doesn't get into my eye. I have to order the lid cleanser online, can't find it locally. Dry Eye Zone has it. For some reason the regular foam irritates my eyes, or just doesn't work as well so my inflammation gets worse, so I have to use the "Plus". I can't use the Ocusoft cleansing pads.

The Acular was for my SLK, not allergies. It was prescribed for the inflammation, as it's a NSAID. But I eventually became allergic to BAK so I went off it in Dec or Jan.

I'm sensitive to most lubricating drops and had a terrible time finding one that helped, after I became allergic to everything last year. So I had to do a lot of experimenting with different products. I'm using OASIS Plus lubricating drops that I get at the Dry Eye Zone. I'm still working (very slowly) on coming up with a back-up product for when they are out of stock or if they discontinue or in case I become allergic. I may end up with serum drops eventually but trying to avoid it. My problem is still not completely under control, so still looking for ways to improve eyes, but they are far, far more comfortable than back in December.

There is a lot they don't know about SLK. I've heard the SLK can pre-date a thyroid diagnosis so you may want to ask for thyroid tests periodically, at least annually. I recommend you also get a copy of your test results. I found out later that I was borderline-hyper for years while docs were telling me my results were normal. Since I had SLK, my eye doc would have liked to know I was borderline and there are supposedly natural methods of improving thyroid function which I might have tried. I think I saw a recent article somewhere on the web that said they think dry eyes increases the risk of getting SLK, due to the drag of the lid on the eye (rather than only prominant/bulging eyes of hyperthyroid Grave's Disease causing the drag).

I'm very prone to fungal infections, so I have to stay away from eye meds that can promote those. Haven't had one in my eyes yet, but have had them everywhere else. So I shouldn't try the drugs for autoimmune type eye problems, though I did try Restasis twice and it did not help. I'm also sensitive to a lot of antibiotics.

I also was diagnosed with Rosacea this year and do wonder if there is a little on my right eyelid margin. But my docs have never seen Ocular Rosacea (they think), so who knows?

I discovered I get far fewer filaments if I run a humidifier around ever 3 evenings, all evening. I get none if I stay home all day and run the humidifier continually, but obviously that isn't practical. I've had trouble with gunk growing in the humidifiers after 3-6 weeks (probably mold) so I've thrown out around 4 so far, but found it helps a lot of give it 2 days to dry out between uses. My PCP suggested I buy cheap ones so when they start growing mold I can just toss them and buy a new one. I hate to litter up the environment though. I've also thought about having 2 or 3 of the cheap ones, so can alternate and let each dry out really well. Problem is the moisture that is in places where you can't reach it with a towel. The hot water ones dry out better than the cold water ones.

I did finally have to start taking an antihistamine, Zyrtec, because couldn't quit sneezing otherwise. But mostly what's helped my eye allergies is throwing out the chemical cleaners and toiletries and getting natural stuff and checking ingredients of those.

I found an interesting old post here (below). I hope something here is of some help. Feel free to ask questions. You can private mail me if youd like.

http://www.dryeyezone.com/talk/showt...Ocular-Rosacea

Mary in VA