Announcement

Collapse
No announcement yet.

New to the forum

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • New to the forum

    Hi, I'm new to the forum and have been reading for a few weeks. I want to thank everybody for the excellent suggestions, and thank Rebecca for all her her work.

    I've been struggling with dry eyes for about 6 months, with the changes in lifestyle it has caused, and the ups and downs of trying something new with great hopes that it will help, and then the disappointment when it doesn't help. I'm 62, and have been feeling old and incapacitated because of the dry eyes.

    It limits me in how much I can drive, read and look at the computer screen- the three major activities in my life. Wrap-around sunglasses help somewhat for driving, but after ten minutes in the car, my eyes feel like someone threw sand in them. Thanks to the suggestions to look for moisture-chamber glasses in motorcycle stores, I got a pair of inexpensive sunglasses with foam. At first they are comfortable, but after a few minutes, I have an overpowering urge to close my eyes (which doesn't happen with plain wraparound sunglasses). I don't know if it is because of the pressure from the foam, something in the foam that I may be allergic to, or something else. Has anyone every had this problem? I ordered a pair of Dustbusters from the dry eye zone store but they haven't arrived yet. I am hoping they will be better. If I were sure that the more expensive moisture-chamber glasses would be better, I'd invest in a pair, but I don't want to spend the money and then find that they are no better than the biker glasses.

    I have a regular ophthalmologist whom I have been going to for the last five years and with whom I have a good working relationship; he has treated my glaucoma with laser surgery, he removed my cataracts and did laser surgery for the clouded lens capsule; he also did laser surgery to fix a small hole in the retina. Fortunately he is taking my dry eyes seriously. He advised me to use Optive drops during the day and Muro at night. The Muro is working better than Genteal ointment, which was his first recommendation. During the day, though, I get the feeling that the Optive may be irritating my eyes more than helping. The ophthalmologist inserted temporary punctal plugs; they seemed to help a little for a few days (wishful thinking?), so he did laser surgery to close the tear ducts on my bottom lids. It didn't help at all. I read about Hylo-Comod in the dry eye zone research section, but it seems that you can get it in Germany, England and Israel but not in the US. The German study showed that Hylo-Comod was less abrasive to the cornea than Optive (considered to be the least abrasive because of Purite?), but Allergan did a study that showed that Optive works better than Hylo-Comod. But how do we know that the study was unbiased if it was conducted by the company that makes the product??? Has anyone tried Hylo-Comod, and is it worth finding someone in a country where it is sold to get it for me?

    Because I've been fatigued for the past year (before my eyes started feeling dry) and live in a high prevalence Lyme area and walk in the woods often, I was tested for Lyme disease. The ELISA came out positive twice, but the confirming Western Blot was negative. I went to a rheumatologist to see if I might have Sjogrens Syndrome, but the autoimmune tests for Sjogrens came out negative. So it appears that I don't have Lyme or Sjogrens. The rheumatologist said that 10% of the time, people with Sjogrens test negative, and since I am suffering with dry eyes, she gave me a prescription for Evoxac. She said it is mostly to make more saliva (which I don't have a problem with), and it would make me sweat more, but it might make more tears too; she said I should ask my ophthalmologist about it before taking it. I asked the ophthalmologist and he said he said he has no experience with it and does not recommend that I take it. Has anyone here tried Evoxac for dry eyes?

    So I am sort of at a loss for what to do next. I have a follow up appt with the ophthalmologist next week. Oh, and I'm eating a lot more sardines and tuna for the omega-3 fatty acids. Sorry this post is so long. I'm open to suggestions-
    Judy

  • #2
    Dear Judy,

    I'm glad that you found this community. I have gotten a lot of help and support here over the last five years, since I found the DEZ. It sounds like you are doing a lot to get to the bottom of what is causing the problems; don't give up! It takes a while for some of us to uncover the causes, and sometimes we are not sure for a long time. In the meantime, keep searching the discussion boards, because there are so many good tips to help with symptoms and pain.

    I'm using Muro 128 5% drops through the day, too, but I have a condition that it sounds like you do not have. I'm glad to hear that the Muro ointment is working for you, though. I wish Rebecca still offered Dwelle. I miss it! It was a huge help to me and the most comfortable eye drop I have used.

    Best wishes, and welcome,
    Liz

    Comment


    • #3
      Thanks, Liz! Maybe I should try Muro 128 during the day too at times when I'm feeling desperate andknow that I will not need to use my eyes for a few hours. I hesitate to because my vision is blurry after I use it. Even when I wake up in the morning 7-8 hours after I use it my vision is still blurry.

      I already found something else helpful in the DEZ resources since I posted. Yesterday I downloaded the F.lux program that Rebecca recommended to adjust the color and brightness on my computer screen, and last night it was very helpful and more relaxing on my eyes. I noticed the stark difference when I turned off my computer and turned on the TV. I wish there was something like F.lux for the TV
      Judy

      Comment


      • #4
        Welcome Jude:

        Personally I wouldn't use ANYTHING that made my eyes blurry for hours after I use it...20 min is my max. Dry eyes is bad enough but at least I can see clearly. Muro 128 is for swelling of the cornea but I don't recall reading that in your post. I am not sure why it would have been prescribed if that was not one of your problems to begin with (maybe it is). Be cautious of anything that makes you worse not better. If foam makes you worse ditch it, if optiva makes you worse try something else. The goal is to improve not get worse and believe me it is a crap shoot. Basically what it comes down to is keep trying until you find something that works.

        Regarding the moisture chamber goggles, I had a pair of motorcycle goggles and while they were of some help they don't compare to the WileyX sunglasses I got as they didn't seal well enough. I even block off the little air vents on the Wiley's since I don't produce enough moisture on my own to fog up anything. I am allergic to neoprene but the foam insert on the Wileys is covered in a soft fabric which I don't react to. Be prepared to spend money on something that has NO guarantees to help otherwise you will never know what helps and what doesn't. If the Wiley's fit your face I highly recommend them.

        Regarding Evoxac I have never used it but I was prescribed Pilocarpina (before I knew that I had Sjogren's) which also causes one to produce more saliva in the hopes that it would help my eyes. I drooled like a dog in my sleep but it didn't improve my eyes. Again it is just a case of try, try again. We are all different and have different causes of dry eye so everybody seems to find their own solutions eventually

        By the way if you are still not sure about the Sjogren's ask about a biopsy. It left me with a small numb spot on my lip but at least I had my answer....good luck...F/G

        Comment


        • #5
          Hi, Judy.

          I agree with F/G-- if you find that something does not work, don't use it.

          I'm glad that you're finding some helpful tips. The F.lux application is really helpful; however, even though it is difficult, due to my job, what is even better is stepping away from the computer.

          Keep working towards building a good routine for you!

          Best wishes,
          Liz

          Comment


          • #6
            It couldn't hurt to try the Evoxac. I was on it for a short time (I test negative for Sjogren's and have no saliva issues but my doctor thought it might help my eyes too) but hated the side effects and honestly, was so bothered by the side effects that I don't remember if it helped my eyes. It made me sweat profusely and gave me so much saliva I could barely sleep at night and when I did, I'd wake up at horrid hours so thoroughly dehydrated that I'd gulp down tons of water and still feel parched. Those side effects might dissipate with time but I didn't stick around to find out.

            Comment


            • #7
              Thanks Farmgirl. The Dustbusters just came in the mail, and they don't seem to irritate my eyes as much as the biker glasses with foam, so maybe this will work. If not, I'll spring for the Wiley-X. The drops and ointment thing is driving me crazy. I feel like I'm damned if I do and damned if I don't. But maybe you are right, if my eyes feel scratchy and blurry whether I use the drops and ointment or not, then why am I using them??? I've tried about 4 or 5 different kinds already, and none seem to help.

              The rheumatologist said that I can have a salivary gland biopsy to test for Sjogrens, but so far I have opted not to do that because I don't have a dry mouth, except sometimes (not every day) when I wake up in the morning- but I assume that is because I slept for a bit with my mouth open. The occasional dry mouth could be caused by my CPAP for sleep apnea. A few months ago I had laryngitis for a whole month, and I thought that maybe Sjogrens could cause that, but the rheumatologist didn't think so. Eventually I got my voice back, and I stopped pursuing Sjogrens. But maybe at some point, I will get the salivary gland biopsy. I also don't have any earwax anymore (I used to have a lot). I was wondering if that could be related to dry eyes and/or Sjogrens.
              Judy

              Comment


              • #8
                Sorry the Evoxac didn't work for you, PotatoCakes. The reason I hesitate to try it is because I have glaucoma, and that is one of the contraindications. The med info said that you should check with your ophthalmologist before taking it if you have glaucoma; the problem seems to be with closed angle glaucoma, not open angle. My ophth says I don't have closed angle glaucoma, but I do have intermittent closed angle glaucoma in one of my eyes, so I'm nervous about trying Evoxac. I think I'll wait on that one until I'm more desperate.
                Judy

                Comment


                • #9
                  Good call Jude. I wouldn't even use Evoxac if I were desperate if there was ANY chance it could cause another problem to get worse. To be honest my dry mouth at the time of the biopsy was not really an issue, like you just sometimes in the night so that is non conclusive. Glad that you are happy with the Dustbusters. Hope they work for you. The only drops I use anymore are Systane Ultra non preserved, You'll find one that suits you the best eventually....cheers...F/G

                  Comment

                  Working...
                  X