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  • lilahp
    replied
    Second the opinion on FreshKote - it is GREAT! However, I think it may go by another name in Europe. Cannot remember what at the present. I think it's the very same thing, though.

    Leave a comment:


  • Rebecca Petris
    replied
    Update

    This is a post from Jennyoxon which she had emailed me to post here... I thought that I had done it but on looking for it recently I couldn't find it so apparently I didn't. Anyway, here it is belatedly (November 2008! Sorry Jenny!!):

    When I last wrote, early in the year, I had some success in improving my severely dry eyes by wearing wrap round Recspecs and having the puncta sealed by cauterisation. Unfortunately, by July, when the weather was dry and warm,my eyes became suddenly very much worse. My eyes were very red and inflamed and the doctors prescribed antibiotic drops and then when they failed, drops for allergic reaction (without preservative), neither helped at all. Then I went to the Eye Hospital and was told that I hadn’t an infection nor an allergic reaction but the problem was solely caused by my dry eyes and I needed to find some way of reducing the number of times I needed to put in my drops (Celluvisc). So I was left, I was taking Ibuprofen to try to reduce the pain and the inflammation. I couldn’t go out of doors until after 8pm and then I had to water the slabs and all my surroundings to increase the humidity enough for me to tolerate it. I spent large parts of the day with my eyes closed and tried all kinds of cold compresses which did help. I knew Panoptx specs would help but I thought I would have to travel to the states to be able to have them fitted. In desperation, I rang Rebecca Petris at the Dry Eye Shop and asked her if she could post me any to try. Rebecca was very helpful and said that two types of the Panoptx glasses fit most women (unless they have small heads) and I asked her to post these two to me. Very fortunately, one of the pairs is a good fit. Rebecca also suggested a pair of onion goggles which I wore for several weeks while the optometrists at the Eye Hospital tried to find a firm who would put a prescription varifocal lens in my Panoptx glasses.

    I can’t tell you how much the Panoptx glasses have helped me. I have light sensitive varifocals fitted which are perfect and it has nearly halved the number of times I have to put in the drops. It means I can drive the car for a reasonable distance before having to stop and put in drops, it means I can go on a long journey which I had stopped being able to do last summer . Hopefully, I won’t be confined to the house next summer on a sunny day and will not be in such a bad way that I have to shut my eyes and resort to cold compresses. It was normal for me to have to put drops in perhaps three times during my evening meal and now I can eat the meal without putting more in! It also helps other people, for example, I play the viol. It took time to put everything down, put in the drops and then pick everything up, then my vision would be a bit blurred for a bit, what a difference to be able to go twice as long without putting in the drops.

    What is it like to wear them? They are very comfortable to wear, the eye cup does restrict your vision a little, not to the side but part of your view of the ground will be obscured and when I am playing the viol it is a little more difficult to see if anyone is conducting. They can fog up in the UK’s misty autumn weather, but I haven’t found a big problem with this and the eye cups are very easy to remove and one could wear them as an ordinary pair of wrap-round specs. I think eye contact with other people is a little less good but my friends have been very complimentary and have quickly got used to me in them. I do find I am now very easily recognized, what a good thing I am a law-abiding citizen!

    Hurrah and huge thanks to Rebecca for enabling me to have these glasses and to live an ordinary life again. The optometrists and my eye specialist at the Eye Hospital are very interested in these specs and I hope that other people will learn about them. The eye specialist said that of all the eye conditions, severe dry eye most badly restricted people’s lives.

    I have written a lot., I hope it will persuade some of you to try some protective eyewear if you experience some of the same problems.

    Jennyoxon

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  • Terri
    replied
    jennyoxon: Dwelle, Dakrina and NutraTear contain preservatives, but they are unlike any preservatives (or eye drops) you will find at the pharmacy. I am unable to use drugstore drops with preservatives, but I can use any of Doc Holly's drops with complete comfort. (I've been using them on a daily basis for more than four months now.)

    I completely agree with Rojzen. Dwelle and Dakrina are highly effective at healing the eye surface and restoring normal wetting properties. None of the other OTC drops I used for over four years did anything like that. In fact, other OTC drops only provide short-term relief at best. At worst, the frequent use they require actually injures the eye and contributes directly to DES.

    Leave a comment:


  • jennyoxon
    replied
    Alternative treatments

    Thank you very much, Rojzen. I will follow up your suggestions over the next few days. I do not know whether these particular products are available in the UK, or whether they contain preservatives if they are indeed available. If I find they are available and preservative-free I will try them, but I will I will let you know what I find out in any event.

    Leave a comment:


  • Rojzen
    replied
    enable the eyes to wet, but not via high viscosity

    Hi, jennyoxon. Your update is beautifully presented, and filled with helpful information. The regimen you have developed is a testament to your determination, and in time, I sense you will recover lots of normal cornea and tear film function.

    I'm a little concerned, though, that the topicals you have used (Lacrilube and Celluvisc) don't have properties that will actually enable your ocular surface to become wetted by the tears that are now being preserved in your eyes thanks to the cauterization. Please visit the posts here at DEZ by Dr. Frank Holly, regarding the critical need to get the surface to become truly wet. Eyedrops that have high oncotic pressure are, so far, the only kind that have been shown, through testing, to enable dry eyes to correct their tendency not to become truly wetted by tears. And many of us here at DEZ have experienced this firsthand. I used high-viscosity and gel matrix drops for years (like Celluvisc, TheraTears Liquid Gel, and Systane), and my condition remained stagnant. Even increasing my tear production, which seemed to happen after a few years on Restasis, never made me feel better. When I switched to Dr. Holly's Dwelle and FreshKote products, over time, my subjective symptoms changed dramatically, and on testing, my tear film stability increased measurably. I once wore moisture chambers every moment I was awake; Now I keep them on hand only for extreme conditions. . .

    If you have difficulty finding the writings here on Dr. Holly, Dwelle, Dakrina, and FreshKote, please let us know. .

    Leave a comment:


  • jennyoxon
    started a topic Update

    Update

    It is some time since I posted anything on this website. Since then I have explored a number of treatments for my eyes (described by my specialist as excruciatingly dry and certainly at the far end of the dry eye spectrum). I use Celluvisc eye drops, the individual sachets which donít have any preservative. At night I use both the Celluvisc and Lacrilube, which in the UK is preservative-free.

    I follow a careful eye-hygiene programme: twice a day I repeatedly soak pads of cotton wool in hot water and hold them over my eyes for 5 minutes, then I used boiled water, cooled but still quite warm, and a cotton bud to clean the lids inside the lashes and then massage the lids with a moistened cotton wool bud. If my lids get gritty I increase the number of times I do this, I often do it three times (at one point I did it 5 times a day, because the blepharitis had got so bad).

    As well as the hygiene routine I had punctual plugs inserted, which helped a great deal. Then I tried Omega-3 oils, which I thought may have helped a small amount, so I keep on having them. Then I tried acupuncture and Chinese medicine which didnít help at all (I did try them for several weeks). I tried to buy some Panoptx glasses but was unable to buy them anywhere in Europe, so I asked for help at the Optometry Department at the Oxford Eye Hospital. They didnít stock Panoptx either, and apparently cannot stock them, but they did have some frames which covered the eye more than ordinary glasses. I chose a pair of Recspecs, which I immediately found helped me quite a lot. I think that the Panoptx would be really worth trying, and now I have got some improvement, I feel I could cope with a transatlantic flight Ė although I might still have to shut my eyes much of the time.

    Meanwhile the punctal plugs, which helped so much, kept falling out and when one of them fell out after only 6 days I decided to have the puncta on the lower eyelids cauterised. This operation is not a pleasant experience, but it has helped me the most. After getting the glasses I had to put the drops in about 26 times a day on average, but since the operation it has decreased to about 20 times a day. Before either of these improvements, in dry places (such as a car, and especially an aircraft) I couldnít cope and ended up having to shut my eyes Ė sometimes I would just go to bed early. Outside in rainy weather is the best environment. (Annoyingly, the air conditioning at the Oxford Eye Hospital makes it one of the worst places to be!)

    For several years I have had extensive dry patches on my cornea, but last time I went to the clinic there were no dry patches to be seen! In fact it may be that the focal length of my eye has changed because the cornea is in better shape. I ordered new multifocal lenses for my glasses and by the time they came my eyes had changed so the lenses were no longer correct. I have been advised to wait another couple of months to see if the eyes are stabilized before getting another lot of lenses, and have had ďcontour mapsĒ of my corneas made to check on this.

    Thank you to all those people who have given me advice. It really is worth persevering to try to improve oneís condition as much as possible. Incidentally, after the cauterisation, I havenít suffered from weepy eyes; but it is something to be cautious about; if you have tried plugs and donít get weepy eyes with plugs, then maybe it is for you.
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