Hi Calibug-
Thanks for trying to keep me calm. It's working. I started working out a few days ago and yesterday attended yoga for the first time in 4 months. Throughout this whole "dry eye" thing- I gave up on my exercise routine.
The good news is that in the past three days, my throbbing head eye pain has almost diminished completely (but not quite) and my lids don't feel nearly as sore. It is just over two weeks on doxy. Perhaps it is finally making me feel better?? My eyes aren't as dry during the day, but I'm still using the Bacitracin ointment at night. That helps keep them lubed.
I have an appt on Monday with the corneal specialist again and I have so much to talk to him about. He had never mentioned the whole ocular rosacea thing. That was diagnosed by the other Drs I had seen in the meantime. He has been out of the office for 1 month time. Somehow that diagnosis evaded him. But ya know what?? Out of all the drs I have seen, this guy I like the best because of his bedside manner. That has to count for something. I hope to continue with him and maybe he can recommend someone in his office (it's a huge 14 Dr practice) that can run those further tests on my pressure. I am not as worried as before because I think that anxiety, depression can play a part in intraocular pressure. Most MD's will say otherwise, but I have read some interesting findings. It won't hurt me to alter my diet some and exercise- that is for sure. By the way, I started a gamma 3 and 6 with borage oil supplement and also a Bilberry supplement in addition to my multi-vitamin. Time will tell.
I also ordered the gel mask. Thanks again for your advice.
Hi Amy! Glad to hear you're doing better! :)
My 2nd appt with my new (female) opth is Monday. I like her because she seems to take dry eye and MGD pretty seriously. I hope I can get enough time with her. When I made my appt, they said okay, we can "double-book" you for Monday 10/4 (why do they do that?!). So I guess we'll see.
Yes, I have my list of things to ask her, and Doxy is at the top. I will also tell her about Dr. Tseng and see if she thinks AMT could help me (although I doubt she will say yes, as every opth so far has absolutely nixed the idea of surgery for me).
So your eyes are less red? Are you taking any steroids? (I think you mentioned you were taking Lotemax now, or have you stopped that?) Do your eyes no longer feel dry or burning during the day? Do you really think it's the Doxy that's responsible for your improvement?
What is the Bacitracin ointment? Is it particularly for ocular rosacea? Or is it some sort of antibiotic or steroid? Does it go on your lids or in your eyes? (I find ointment too irritating for my eyes at night). I wonder if I should ask my opth about this as well?
BTW, I tried to sleep with these foam goggles I bought through a travel catalog, as my opth wanted me to use something to keep a moist environment around my eyes at night. They were actually quite comfortable, but the skin under my right eye (where the goggles were touching) became irritated and swollen (it figures).
Thanks again for sharing all this info, Amy. If it weren't for your positive experience with Doxy, I'd probably never ask about it, as I hate taking any kind of systemic meds. But I'm kind of at the end of my rope now, and willing to try just about anything!
Calibug--thanks for all the info on the hot compresses and eye scrubs!!
Hi again Lulu-
Yes, my eyes are definitely improved. But I'm almost too afraid to say that for every time in the past, I seem to speak too soon. :nono: Anyway, our appts are on the same day. Mine is Monday at 4:20pm. I really hope to get some encouraging advice and understanding. I hope this Dr will take the time to really examine the back of my eye as well. My elevated IOP is bothering me almost as much as the dry eye issue.
I am off the Lotimax and doing well. I take the Doxy in a very minimal dose of 50 mg twice a day. So far doing real well. No yeast probs or anything. :D I cut the pill up with a knife into about 2 or 3 smaller pieces (and its a small pill to begin with) but I find that if I take it directly after a meal- there is no stomach upset. For me this works better than taking it whole. The Bacitracin in an antibiotic ointment. The Dr said I did not have the Seborrheic (sp?) kind of blehpharitis because my lid margins don't have flakiness. They appear clear, but he thought that if I had microscopic staph on my lids - that this might calm the inflammatory reaction due to their toxins. I put it on the inside of my lids like I used to use the Refresh PM. It doesn't seem to be as irritating as the Refresh PM. Not sure how long I am to use this, but I will for awhile anyway.
I went on a hike with the family today. Hot here. 75 degrees. Felt pretty good. Just a tiny bit of meibomian "twinges"- but nothing major. Very much reduced burning. Eyes not as dry, but they are oily. The Bacitracin really seems to stick in my eye- even after my morning shower. But I'd rather be oily than desert dry.
I'll be thinking of you tomorrow and anxious to hear your report. Please do share.
Hi Calibug, Lulu, Steve and others!
I'm back from my appt. I didn't learn anything new really. This guy also said I definitely had ocular rosacea and the good news is that the doxy seems to be helping and he was happy (as was I) about that. He gave me an RX for 6 months! What we are dealing with here is very chronic. I am to keep up the lids scrubs and warm compresses. He wanted me to stop the Bacitracin ointment at night within the next week. I hope I continue to do "okay" without that. I will probably have to go back to Refresh PM or Genteal Gel at night.
Now for the not so good news, he was also concerned about my eye pressure readings over the last few months. He wants me to come back next month for a dialated exam, visual field and that new OCT test. (takes pictures of the optic nerve) I asked him about anxiety and stress and if there is any correlation between that and ocular pressure and he flatly said "no." Most opths do, but I have heard of a few that disspute that. It would be nice if the latter could be true because I know I have been under my share of anxiety lately. Hmmm.
Anyway, that is all from this dry eye camp. I hope I continue to feel better and get this all under control. I see the dermotologist on Wed about my skin rosacea. I'm so sick of Doctors. Oh, when I was waiting for my appt- my face got all hot and burning-like. I went to the bathroom and sure enough, it was red as a beet!
How is everyone else doing?? Lulu, how did it go??
Amy
Thanks Amy and Calibug for the Doxy info; you've given me a much better idea of how it works, and why it was prescribed for me. I haven't noticed any change yet (5 days...do I expect miracles or what?), but I'm really hoping it'll do some good.
Amy, you asked about the Cetaphil...I really like it for my lids (this is the only place I use it). My opth gave me some other lid scrub to try (it came in little single use packets), which was fine, but burned like the dickens if I accidently got it in my eye. Given that I'm doing this first thing in the morning, and before I fall into bed at night, I'm not always at my most careful or coordinated. The Cetaphil never burns, so it's my lid scrub of choice. :) Yes, my eyes also seem to get really tired as the day goes on, and I can't wait to get home and rest them; I'm not sure if the dryness is any worse in the evening, as they seem equally dry all day.
What are you using at night now? Do you think the Bacitracin helped you? I'm kind of disappointed my opth wouldn't prescribe me with an antibiotic ointment yet. Did you ever find out what caused your eyelids to swell up?
Hi Lulu-
Before I say anything further, I want to tell you how much it has helped me to have you (and Calibug and the others) to talk to. I would feel really alone without all of your help. Just listening helps. I still can't believe 5 short months ago, I never had an inkling of anything like this was to come. Life was so good.
My lids are a bit irritated today and eyes too. I just put a drop of Celluvisc in.....Ahhhh! I see lots and lots of faint red blood vessels, giving my eyes a pink appearance. Some are very close to the iris- that can't be too good. The Dr took me off the Bacitracin because he said if I used it for more than 2 wks- I could get a toxicity from it. He told me to go back to Refresh PM (which sort of irritates my eyes some) I tried that for a couple nights and then went back to Genteal Gel. That one I like the way it feels going in, but I seem to wake up a bit sticky and dry. Do you? I also need to reapply at least twice. How about you?
Thanks for your Cetaphil info. I'm going to try the face wash and the Cetaphil moisturizer plus sunscreen variety.
Hey Steve-
I'm glad you are staying on this forum. Even if we all have different diagnoses, we are all still DRY, right??
I have noticed that when my eyes are irritated, like the lower lids are with this posterior blepharitis, the result is it makes my eyes FEEL very dry. Yes, when I blink- I'm dry too. I will ease up on the warm/hot gel mask a bit. Thanks for your advice.
I wish you well with your neuro-opth appt.
Amy
Calibug-
Warm compresses are confusing, aren't they? I'm not sure if it's helping or hurting. I do know however that I haven't had crusty lids in a long while and now they have returned. It could be a reaction or irritation from some of the new facial stuff I've been using (sulfa and cleanser w/ sunscreen) I suppose. I don't know. My lid margins are reddened and the entire circle under my eye is inflamed. As I massage them in the shower, they feel thickened and sore and they seem to excrete a weepy oily sticky substance. I feel the symptoms have gotten worse after I quit the bacitracin ointment, but the Dr told me to stop using it. If the Doxy doesn't help me in the long run, I will really feel hopeless. :confused:
I've gotten quite depressed over everything I'm dealing with "eye wise" so I saw my internist and have now started the antidepressant Celexa. Let's hope a side effect is not DRY EYES. All of this has really taken its toll on me.
Glad you are doing well. When do you think you will see Dr Tseng? Also, when you get a clogged gland, what do you feel or see? A bump, a thickening, soreness or achiness? I'm just curious.
Isn't that bizarre how you can be having a good "eye day" one day and then BAM! the next is bad?? It's wierd. Somedays when I think "Geez, this is really bad," the next day surprises me and it's not. Anyway, I guess I have had two pretty good days now. (or so I thought) I had a 1 mon appt with my opth today and he said my eyes looked a little worse than last month. :rolleyes: More reddened with vessels. The wierd thing is that he pressed on the oil glands and says my oils are running clear and unclogged. Wants me to stay on the doxy and re-ck me in 3 months. He wants me to use the Bacitracin (I told him it helped me before) for bad flare-ups just for two or three days at a time. That is an antibiotic. He also wants me to keep my hands away from my eyes as much as possible and not do anymore lid massages. He says to keep up the warm compresses and lid scrubs are ok for me, but he thought the massaging was doing more harm (irritation-wise) Wierd, I know, and of course this is just his opinion as it pertains to me. I'll try that for a bit, I guess.
Now, on to my super good news!!!!! You may remember that I have been worried sick about the possibility of glaucoma. Well, today I had the whole gamut of tests run (dialated exam, visual field, and the newer OCT test) I'm happy to report that I have no defects and my optic nerve is healthy and has not been damaged due to my pressures. He says 19 and 20 (I've had as high as 23) is normal for me. I can't tell you how this relieves my mind. Now I just have to deal with this darn ocular rosacea, but that is definitely more acceptable to me. So hip, hip, hurray! :bouncing:
Calibug, Lulu and Everyone~
Isn't it wierd that 7 months later after this whole thing began, I'm still unclear as to what my problem actually is? I mean, I do have rosacea so it makes sense that I have ocular rosacea, but what about the blepharitis and aquaous deficiency? I just wish I knew for sure. Yes, the Schirmers test supposedly tests for the lacrimal accessory glands (not the big lacrimals that induce reflex tearing) I still think maybe my tests were skewed a bit due to the anaesthetic drops used just beforehand that actually lubricated my eyes a bit. Mine were semi normal at 9 and 15, but slightly low. Calibug, I am interested in finding out if my night dryness could be due to a mucin problem like you mentioned. I think I read something on that. If anyone knows, please do share.
Lulu, I'm glad your eyes are feeling a bit better and you've cut down on artificial drops some. When did you see your Dr last? I don't go until mid Feb.
By the way Calibug- did you ever find any answers on erythromycin ointment? I had read on another thread that you were considering that. The bacitracin (another antibiotic) that I occasionally take seems to help every time I have a flare up. That would indicate a microbial problem wouldn't it? Sure wierd that I didn't have this the last 34 yrs of my life. See, I can distinctly trace this all back to the one day it started. I wish I could figure it all out. I hope your eyes start feeling better again.
One more question.........does anyone out there find that when their dry eyes get in the morning shower- that they feel all slippery and soft? I can't see any mucus or oils, but they start emitting this clear slippery substance. Anyone know what the heck that is??
Thanks for the recommendation Gustone. I may try the Soothe Drops. You certainly aren't the first person that it hasn't worked for though. I haven't heard as many positives as I had hoped. Still, it might be worth it. I'm glad the goggles are working for you and that your corneas were able to heal. I also notice I feel better after using an antibiotic ointment for a few days. I use Bacitracin, but my Dr told me only to use it for about 2 days at a time so I don't have a reaction to it. Do you use it repeatedly? Please continue to share with us what your Dr at Scherpens (sp?) recommends. Sounds like you have a good one.
Calibug-I clean my eyes with Cetaphil (just a tiny *** worth) on two round wet cotton pads. (one for each eye) I gently rub with my eyes closed for about 10 seconds and rinse with warm water. This also removes what little eye makeup I wear. It works well. I once tried the Q-tip method with eyes open. Never again. Too irritating. Hopefully a more gentle scrub will help you in the long run.
Since my eyes have been bad the last week or so, my anxieties have surfaced again and some depression. Obviously it effects me to some degree in my subconscious because I have been having dreams about bad things happening to my eyes. I guess you might call it an overreactive imagination. I've been thinking about ordering Dr Nase's book, but I'm kind of a cheapie. If there is only a small portion on ocular rosacea than it might not be worth it. I am interested though in hearing the stories about people who have gotten their rosacea under control without drugs. Kind of like healing the inflammation from the inside out. I've considered seeing a naturopath, have you ever?
Calibug-
You are so sweet and knowledgeable. Thank you for trying to help me. The last two weeks I have been in "eye h_ _ _ " I don't know what the heck happened. My lid margins became bright red and very sore where the lash follicles at the ridge and swollen too. Warm/hot compresses do not help at all. My eye surface along with the surrounding lids just burn constantly. I have to blink about every 1 1/2 seconds on average due to drying or irritation. (whatever the heck it is) Even closing my eyes is uncomfortable due to the sweep of my lids over the eyeball surface initially. Nighttime seemed more comfortable because I could just keep my eyes closed until it got so bad last night that my lids stuck shut again. I got up in the middle of the night and used the Bacitracin (antibiotic ointment) Dr didn't want me to use it very much because of irritation and toxicity. But, it seems like I have to rely on it every 2 to 3 wks. I'm not even sure why? Is it overgrowth of bacteria? I'm not even sure that was a problem for me. Or maybe perhaps it is just the greasy lubricant that helps me for a few days an so I'm drawn to it. I was trying so hard to hold off using it, but I felt like a junkie in the middle of night- desperate and at my wits end.
My face has been flaring badly too. I am so discouraged that I don't feel that the doxy or the sulfa drug is working at all. After nearly 6 months on doxy- when it begins to not be effective anymore is very crushing. My husband an I booked a 7 night caribbean cruise in two months (first time anywhere without the kids) so this is a biggie for us. Of course when I booked it I was feeling much better and excited about it. Now, I can't even imagine being in hot mexico and dealing with my eyes. It is so depressing. Now this also leaves me with not enough finances to get down to see Dr Tseng (at least at this time) Not sure I've done the right thing. I really wonder if he could help me anyway.
I will ask many questions at my appt. Thank you for the suggestons. I'm sure I have a 10 mintue slot for an appt time. :rolleyes: I drive over an hour to get into the city so he better take the time. I do want a schirmers test again. 7 months ago they were 15 and 9. I think they are worse now. My eyes never water except in the AM after about7 or 8 yawns. They are so scorching dry when I wake up that my body just tries to flush my eyes with any tears possible to combat it. I wish there was some magic treatment. I will ask about diquafosol too and Restasis. I still have 3 month supply here at home. The stuff is expensive and I'm sure it will expire soon. I still really do not know if this is oil, mucin or what. I wish he could measure it all out for me. It is strange though that bacteria could play a part. You know, for 30 years- I splashed water on my face, washed my face very lightly- just enough to remove my makeup, wore contacts and wasn't particularly scrupulous about their cleaning and care. Never had a problem in my life!! Now, here I am avidly cleaning to keep everything sanitary. I am going to try to pick up some of the disposable masacara wands at the beauty supply just to see if that helps. I used to go months and months at a time on the same mascara bottle. Never a problem before. Now I am such a mess!!
Interesting about the Elidel. .... I have some of that stuff for my son's mild excema. I guess I won't try it on the eyes though. :eek: I sure have noticed a pattern with stress though. My face gets quite red, but that is usually initiated by my eyes flaring first- which causes me the facial stress reaction. If I could just fix the first.
I will try to keep checking the boards, but I was lucky to get on today because my computer has been going wacko. If I am not around that is probably the reason, otherwise I went and stuck my head in the sand. :eek:
Amy
P.S. If anyone has any other advice or similar situations to share, I'm all ears.
Amy, sounds like your rosacea symptoms might be just really flaring up and causing you all this pain. I feel so bad for you...and everyone else with dry eyes/mgd or blepharitis...or whatever causes you pain. This stuff is horrible... I'd say get every little bit of info out of your doc as possible. I wish we could get to the root of the problem and get this stuff under control.
Don't let it discourage you about the cruise...how funny...we are taking one as well...Western Caribbean in April. I'd love to tell you where and when but I hate posting personal info on the web. That would be too ironic to be on the same one. :-)
I talked to my doc about it though and he said to make sure to cover up with lots of sunscreen....not only for the Rosacea but also because of the doxy. While you take doxy, you can become more sensitive and less protected to the sun. He told me to use Total Block spf65...there is also Cotz spf58 and LipCotz spf30+. The latter two are with titanium and zinc which is better for rosacea skin. I think they call them physical sunscreens instead of chemical sunscreens. The chemical kind burn my face. I haven't tried any of these though yet. He just gave me a pamphlet on it. I used a couple of really good creams last summer at the beach and they worked out well too. I'll get those names for you.
Don't let this keep you from going on that cruise!!! I refuse to let this stuff keep me and my family from opportunities. I know you are uncomfortable and it can make even vacation work...but don't give in. I personally am not going to let this stuff keep me from having a good time. I even plan to snorkel! Will probably burn the eyes but too bad. I tried the "just stay home" routine for awhile... it made things worse and caused me to worry even more about my eyes.
He also told me to be aware that on the boat, even if you wear a hat, the sun reflects off of the deck and back under the hat and gets your face, so wear lots of sunscreen!!
Something you may want to consider as well is getting some really good goggles for swimming. I have a pair that also protects from UV light since my eyes are extremely sensitive to the sun. They worked great last summer. Also, the ocean water doesn't seem to bother my eyes like at the pool.
You may want to find out more about that Bacitracin and make sure that isn't contributing to the problem. I don't know but some meds can have a rebound effect...I would double check just to play it safe.
Ladymoon-
Hello. We meet again. I have been reading all your posts. My MGD is much improved by not totally gone (if it ever will) This is what I have done to get to where I am. I did 2-3 warm/hot compresses a day followed by a light lid massage. I wash my eyes with a cotton pad and either Cetaphil cleanser or Oil of Olay foaming face wash. I used to use an antibiotic RX cream called Bacitracin if the inflammation got too bad. My lids get puffy and sore at the rim (usually at the top) Sometimes it gives me a aching, tugging feeling. Anyway, the Bacitracin always helped the inflammation and I only used it for two or three days at a time. I rarely use it now. I was on Doxycycline for 7 months and have been off it 6 wks now. It seemed to help initially really well, but for me it was a mixture of not liking being on a drug that long and also it seemed to stop having as much positive effect. If you haven't done so, I would consider it. I am still on Restasis and have been for 3 1/2 months. The progress has been very s-l-o-w, but I feel like I am having more normal days when I don't think about my eyes as much. Oh yah, I also have upper plugs which helps but amazes me to how I can still be slightly dry with them in. I'll never know where my tears went. The latest thing I have added to my "regimen" is daily grapeseed extract which is supposed to be helpful for rosacea related MGD (which I have facial and ocular). I take a daily flax/borage oil suppliment and have recently started eating almonds. ;) Learned that one here.
So, things aren't at 100% yet, but I'm thankful for reaching the point where I am. I still get dryness sometimes in the afternoon or middle of the night, but it is not bad as I rarely use drops.
Keep doing what you're doing and maybe try some new things. Good luck!
