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Thread: Newbie from Virginia

  1. #1
    Junior Member tinkerbelle04's Avatar
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    Default Newbie from Virginia

    Hi, from Virginia!

    My optometrist diagnosed me recently with chronic dry eye and all it's associated conditions---blepharitis, Meibomian gland dysfunction, nocturnal lagophthalmos, computer vision syndrome, allergies---and looking at my face and eyes lately I am 99% sure I have Ocular and facial rosacea. I have an appointment with an ophthalmologist and dermatologist to find out more, so stay tuned.

    Life pretty much sucks right now. I am sure it will get a little better when I find out everything I need to know, and have all the things I need, and have a routine down. Just before this, I discovered I have a thyroid tumor also, scans on it etc every 6 months.

    As of now, I am using Dwelle drops A.M. and P.M. and sometimes in the middle when not wearing contacts.

    I use Nutratear daily when not wearing contacts, Refresh contact drops while they are in.

    I have other drops to use to, haven't made up my mind yet which help the most, it is all new to me.

    I do the twice a day heat pack followed by the Ocusoft eyelid cleanse. That seems to make the spots on eyelids and the bumps in my eyebrows much redder. I guess I should keep doing it though till my appointment.

    Also have a weighted cold pack when I need it such as crying all week cause my cat died.

    This is all getting very expensive, my husband is not happy, but of course knows it can't be helped.

    I had to get moisture control sunglasses and some moisture control goggles (for yard work, I do it all.) My glasses needed changing, I got prescription reading glasses too, and contacts, then all this other stuff. $$$$

    History---

    I am 54 years old. I have worn contacts for 25 years. ALWAYS had trouble with red eyes. NOT ONCE did any optometrist or ophthalmologist test me for dry eye or anything. About three years ago, I started waking up with my eyes glued shut. All the docs did was give me allergy pills/drops. Around 5 years ago I noticed a little scabby place under my eyebrow on right side. It has gradually expanded to a large red triangular shape. Again, no one suggested I had anything, so I thought sun damage and had planned a dermatologist trip that kept getting postponed.

    Right after my July 2007 eye exam, things started getting worse, but due to money and insurance only paying every other year I didn't go again till July 2008. I did not see any of my regular eye docs this time. There was a doc from another town there, working extra hours on his days off from his own practice, and HE diagnosed me.

    Also said something about veins growing into my cornea and that I will probably need cataract surgery in a few years.

    Will post more after I know more, but wanted to introduce myself and get any help, critique on my routine, anything -------Thanks! Joan

  2. #2
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    Default

    Welcome to the board. Take a look at this thread in the "Ocular Rosacea" forum, particularly the first post by phlika29:

    http://www.rosaceagroup.org/The_Rosa...ad.php?t=15902

    Also, here are some articles on the other rosacea board:

    http://rosacea-support.org/articles/ocular-rosacea

    You're doing the right thing in seeing an opthamologist and dermotologist. Good luck.

  3. #3
    Moderator Melissa W's Avatar
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    Hi Joan,

    First of all I want to say that I am so sorry about your cat and cold packs are definitely good for crying eyes that are swollen and puffy.

    It sounds as if you are finally on the right track and all but I would caution you if the heat packs are making you redder to decrease the amount of time/temp. Or is it the lid scrubs making you redder?

    Cleansing your lid margins is a critical step in getting your symptoms under control but you just need to find a non irritating way to do it. Also keeping your eyes moist with rewetting drops is also important especially if at night your eyelids don't close fully.

    Regarding the "veins" growing in your corneas do you mean neovascularization? If so you need to be refit with different contact lenses (if you are still wearing cl's that is) and definitely decrease your wearing time of the lenses. Neovascularization means that your corneas are not getting enough oxygen be it from dirty cls, overwearing your contact lenses etc. Disposable Cl's(preferably daily disposables) are the way to go if you are still wearing them.

    Best of luck and once you get this under control everything will be a lot better

    Best wishes,
    Melissa

  4. #4
    Junior Member tinkerbelle04's Avatar
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    Thank you both for the welcome and the links to articles. I am saving them to a folder so I can read them and refer back to them also, memory isn't what it used to be. (Thanks for the kitty sympathy, she was 18 1/2 yrs old.)

    I am not sure which is making me more red. I guess I should test that. I am very gentle with the scrubs, but the heat feels so good, I leave it on till the pack cools off. I will first cut the time down and see what that does and just experiment a little till my appointment. With my memory, I guess I really should journal this. I never dreamed it would involve diet changes etc.

    The worst thing is---I am terrible at talking to docs. I never get out everything I want to say or ask.

    I am not sure if the veins are neovascularization. I honestly don't think the doc used a term for them. I had been on the monthly contacts....but the last docs said I could wear them 6-8 weeks. I did that sometimes, not knowing. Now I am changing them every 2 weeks.

    I am grateful that this doc diagnosed me, as I said, no one else had paid any attention except to dismiss it as allergies. Some of the things he said were strange----like for the heat pack he said to boil 2 eggs twice a day and put them on my eyes for 10 minutes and that they had to be pretty hot. Well---I did some research first and ordered the gel pack from dry eye zone that you microwave, and use it comfortably warm. Anyway, I have no doubt that he was right on the other stuff, but I want someone more specialized to confirm things and see if I am right about the rosacea.

    Curious, I am reading that getting over heated is a trigger for some, I am hot natured. We have central air, but I still have a window unit running in my bedroom 24/7 even in the coldest of winter. Are most people with this on the warm natured side??

    I forgot to say I am wearing a sleep mask at night to help keep my eyes closed more and to help with them drying out, and am taking a TB Omega 3 daily also.

    Thanks again!
    Joan

  5. #5
    Moderator Melissa W's Avatar
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    Joan,

    I too run warm most of the time and we sleep with the bedroom very cold and the a/c is also always on except for the coldest of winter days when we have the bedroom windows wide open LOL

    The hard boiled egg is actually very good to warm and use on your eye. It fits better than most warm packs and retains the heat better also. Potatoes are also a good tool for this. Believe it or not! There was a patient that had this huge chalazion and warm compresses and topical antibiotics were not touching it. Then he used the potato heated up and in 4 weeks the chalazion totally shrunk.

    I bring my husband with me for doctor visits where I feel I may be overwhelmed and/or need someone there to absorb the info I might miss/forget to ask. It is a huge help and also great moral support. If you could get your husband/friend/family member to go with you it would be a help.

    18 1/2 years is a good long life for a kitty but I know how much you must still miss her. We have 2 cats and one is getting old and I love him so much and can't bear to think about the inevitable day

    Keep us posted Joan and best of luck at your next appt.

    Melissa

  6. #6
    Junior Member tinkerbelle04's Avatar
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    Hi everyone! My ophthalmologist appointment finally happened. She did agree with all the diagnoses by the optometrist. She said to keep doing the heat pack on my eyes at least once daily before bed. Even with rosacea. Just not too hot, and not extra long, but just to let comfort dictate that. My upper eyelids seem droopier just since I posted here first, and she said probably none of the treatments would improve it much, just something I have to live with. She said the cold pack would help with that, but never had much luck with that theory either.

    The only thing extra she did for now was prescribe AzaSite, nightly for one week, then twice a week. If anyone has experience with this I would love to hear. She did not want me to start on tetracycline till I was evaluated by a dermatologist. Her husband is a dermatologist, in the same building. It takes months to get in to see him usually even with a referral. Her office called down to make me an appointment and they had a cancellation for that afternoon, so I took it. I messed around Walmart and ate lunch till time.

    He put me on Plexion to wash with once a day, he said in the shower, but can't see where the place makes a difference. He said it is drying, that I could put it on quickly, rinse, then wash with the Cetaphil or whatever, then moisturize. Right now using either Cetaphil cream, CeraVe, or Eucerin SPF 30 depending on my mood.

    They gave me generic Plexion, it is called Clenia. Oh, he told me not to use my Olay anti-aging products. He said they don't work that well, and are expensive in the long run. He said after we got everything under control, he would prescribe Retin-A, that it worked and that if you knew where to get it, that it wasn't that expensive.

    Then he put me on Minocycline, 100 mg twice daily. It has 6 months of refills, so I am guessing a long process?? I have drank more beer in the past than I should and still drink low alcohol low cal light beer almost daily, so I go back in 3 months and he will do blood work then.

    I am guessing my skin is going to look much worse than it does now, before it gets better??? I already don't leave the house except for taking Mom places, stuff I HAVE to do and Curves---and I haven't gone to Curves lately, I have just felt bad with all this.

    So sounds like three antibiotics to me. I get sick in the winter a lot. Killing off good bacteria too doesn't sound like a fun winter. I guess I can look forward to lots of plain yogurt and Live Active cheese!! Also, due the the thyroid stuff, it is already hard for me to lose weight even when I am doing good as in daily workouts and so on......add yeast to the equation and maybe I should just bury myself in my room and forget all this.

    Make-up.....I haven't tried any of this yet, but I broke down and bought the Bare Minerals Medium start up kit from Sephora, and the new Maybelline Liquid Mineral Power foundation and compact mineral powder. Also bought to try--the new Loreal Bare Naturale Mascara and the Loreal DoubleExtend Mascara that puts the tubes on your lashes. I won't put it all the way to the base of my lashes till the eye stuff gets manageable, but I also won't go out where I am face to face without mascara---and I will remove it quickly when I get home. This is getting expensive---can 't afford it, but can't not afford it either.

  7. #7
    Moderator Melissa W's Avatar
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    Hi Joan,

    You may find this link helpful:

    http://www.rosaceagroup.org/The_Rosa...ad.php?t=15902

    Best wishes,
    Melissa

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