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  • New and Trying to Cope

    Hi,

    I have been lurking for a while and finally have gotten the nerve to post. This is going to be long so I apologize. I was diagnosed with dry eyes in Feb. I had what seemed like an outbreak of Rosacea or perioral dermatitis this winter. During this time my face would tingle and my eyes would burn terribly, so badly that I would have to sit down and take deep breaths. Thankfully these spells would last a very short time. I did go to the derma and he put me on Tetracycline for my skin. I was on this for about a month when my eyes started to become dry. I woke up on Monday and thought my eyes felt kind of dry, by Wednesday I was on my kitchen floor crying from the pain. I went to the our local eye institute the next day and the Dr there told me that I had dry eyes and blepharitits. My schrimer test was 1 and 2. The Dr was totally cold and unsympathetic. She told me I needed to get blood work done, but wouldn't give me an order to do it until she checked me in 2 weeks. I don't think you should tell someone they might have an autoimmune disease and to check it out, but you need to wait until I feel like letting you get the test. I got it anyway and it came back negative, but I now know that Sjogren's doesn't always show up in your blood work. I have become extremely depressed and anxious from all of this. I stated taking antidepressants about a month ago now and have to take Xanax about 2 x a day. I found the Xanax helps with the pain, I'm not thrilled about using it. I have 4 plugs, use drops about every hour, and have a new Opthamologist. Thank you for letting me share all this, there are times that I feel hopeless. I just need to connect with people who understand and can relate. Any insight or advice you would like to share with me would be greatly appreciated, especially how you cope with the burning and pain.

    Carolyn

  • #2
    hello

    Do you have dry mouth - if you only have dry eyes and no dry mouth and no joint issues - forget sjogrens -

    dry eyes are manageable - so don't give up - aif you have 4 plugs, you are bone dry.....
    Xanax I can understand takes away from lifes miseries....

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    • #3
      Have you been told to do warm compresses and massages?

      What about your diet, have you been told to take Omega 3 oil?

      Bernadette

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      • #4
        Thanks for your replies. I don't have a dry mouth, although I have noticed some dryness since starting the antidepressant and xanax. I don't seem to have joint issues either. As far as diet goes I have been taking Barleens flax oil everyday and fish oil, coenzyme q-10, vitamin e, c and a multiple. You name it I'm trying it. I also just started using something called Monavie, it's an acai berry vitamin type drink they have at the gym. I also do the warm compresses and eye washes 3 times a day and finishing a course of doxycycline. The bleph has gotten better, but, as you know the dryness and pain can be very disrupting and distressing. I just don't get how one week your eyes can be pretty much ok and then the next week dry as a bone!

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        • #5
          I agree: it is confusing how your eyes can feel normal one week and that dry the next. A lot of us have a specific event we can point to (surgery, in my case) that caused our eye problems.

          It is good that you have a new doc. If this one doesn't work out, try not to feel too down. Just keep looking until you find someone knowledgeable about dry eyes and willing to help you. Such doctors do exist!

          The anti-depressant issue is a serious one. I'm glad you are trying to treat the depression, but, at the same time, anti-depressants are notorious for making eyes drier. Not all of them do, and they don't affect everyone the same way. But you have to be careful.

          I had a raging case of blepharitis by the time I found my current doc (after 5 ophthalmologists who were no help at all). Azasite helped me quite a bit -- got the blepharitis under control. There has been quite a bit written about it here, and it's gotten mixed reviews.

          Are you trying Restasis? With such a low Schirmer's score, I would think you'd be a candidate, since it helps your body produce more tears.

          I know that this is new and has totally thrown your life into chaos, but there are still many things you can try. I hope you and your doc can get to the bottom of why this started. Please, keep your chin up!
          Teri

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          • #6
            Hi Carolyn,
            We're kind of neighbors. I live around the eastern tip of Lake Michigan in SW Mich. Sounds like you had a very fast introduction to dry eye and it's not fun.

            I'd like to tell you that the issue of Sjogrens isn't of major importance in treating your eye problem. Sjogrens is very hard to diagnose and some people never do test positive and they're sure they have the disease.

            Whether or not you have Sjogrens, the treatment is the same. Drops, compresses, rest, away from the computer, Restasis, plugs etc. So I'd be concerned about getting relief on the dry eye issue.

            My dry eye problems started with Lasik surgery almost 10 years ago, but was also diagnosed with Sjogrens two years ago. Lucy
            Don't trust any refractive surgeon with YOUR eyes.

            The Dry Eye Queen

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            • #7
              Thanks so much for your help, I can't tell you what a relief it is in this dry eye chaos to have this site and people like you.
              I did go back and forth about taking an antidepressant because of the drying effect, but I didn't eat or sleep for about a month, not even an exaggeration. I had to do something. It really was a last resort. I tried keeping up with my yoga, meditation, exercise, but it just wasn't working. I don't think they have made my eyes worse, just helped me get things in perspective. That is a good point about Restasis. I have been interested in it, but my new doc kind of thinks that it doesn't work. I will talk to her about it at my next visit. She did give me a bandage contact lense to wear. She said it worked for one of her other dry eye patients, and she wears them 24/7. It drove me nuts and increased the pain in the trial eye. I was hopeful.
              Anyway the info about Sjogren's is good to know, sounds like the treatment is the same. Lucy, Michigan is beautiful. Some friends rented a house near Union Pier last summer, we had a great time at the beach. I have also done some skiing in the UP.

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              • #8
                HI Carolyn - we're neighbors, I'm in Chi-town too. I posted almost the exact same note in my first post. I have been to 3 doctors about my horrible red dry eyes. First one just kept giving me drops. Second one gave me 4 permanent plugs and Restasis. I've also been using a humidifier, wearing goggles at night, Genteal Gel at night, Flaxseed Oil, warm compresses...you name it, I'm doing it. I met with my recent doctor last week and he told me that this might just be as good as it gets. I said...bullcrap, and found another doctor. So...on a positive note...I just got back from Dr Brouchard in Oakbrook Terrace (had to go all the way out to the burbs!) He actually did the schirmer test and they were soaked! He told me I absolutely do not have a problem with tear production (which my last doc just wanted to keep giving me tears.) I now believe I have a real diagnosis...ocular rosacea and MGD. All of the things I've been doing can help...but he's now put me on Doxycycline...and we're trying a steroid therapy. Using Lotemax 4x/day for 4 days...then 3x/day for 3 days, 2x/day for 2 days, 1x/day for 1 day....bottom line the idea is to find out what duration works for me. What's the least amount I need to use to get results. I'm reading everything I can on this new diagnosis, and it fits my symptoms to a T! So...I'm feeling a little hopeful this time. At least I dont feel like I'm crazy anymore...that there really is something wrong with me. I also just started acupuncture and have met with a nutritionist. Nutritionist believes I have a gluten allergy, and some type of autoimmune issue going on. For me...I really think I've finally found the "magic" 3 people to help me through this. My advice to you....trust your own body and what it's telling you. If you feel like there's more to this whole thing than what your doc is saying....go find another doctor and read everything you can online, and keep posting so we can all help each other! Good luck!

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                • #9
                  Hi,

                  Thanks for the information about the Dr in Oak Brook. I'm going to a Dr in Wheaton at the Wheaton Eye Clinic which is considered an excellent clinic. I like my Dr and I know she wants to help me, but if things don't work out I will change Dr's again. I was thinking about trying acupuncture and Chinese medicine too. My good friend recommended a Dr in La Grange who is an MD and practices Chinese Med. I have one question, did you have a very low Schirmer's score at any time? Thank for your hopeful post!

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                  • #10
                    Is the Shirmer test the one with the paper strip in your eye that measures the amount of tears? If so, I had one with my second doctor...but the assistant did it right after she put the yellow dye in my eyes...so the results were questionable. The doc just disregarded the test assuming it was incorrect. This new doc did the test and they were soaked through...I dont know the number, but they were soaked to the end of the strips. The problem is that I dont know what it was before the plugs were put in.

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                    • #11
                      Hi,

                      Yes it is the paper test. Thanks for letting me know. Mine were really low 1 and 2. I don't know what mine is now after plugs, but I'm still pretty dry. Good luck with your treatment, it sounds like it is going well. Keep me updated!

                      Carolyn

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