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Pretty much in despair, actually. UK.

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  • Pretty much in despair, actually. UK.

    Hi everyone, I'm new here and you all seem to be much better informed than me, I'm hoping I'll get some help here.

    I've had dry eyes for about 7 years, and haven't slept through the night since 2016. I've seen two consultants on the NHS in that time, and one privately. The NHS prescribed Pred and Opatanol, I've also used Cetrizine, hot compresses, lid hygeine, Vit A ointment, and have had punctal plugs, which fell out shortly after insertion. I've been on a course of doxycyline, with no effect. My eyes are dry and inflamed, and I frequently have infections. The only thing that MIGHT'VE worked, a bit, was Pred, as I noticed that I only woke once in the night for a few days during the course. I used Thealoz Duo between 1 - 6 times at night, as I wake with my top eyelid stuck to the eyeball.

    I saw a private consultant in June, and he diagnosed the following:
    • Bilateral dry eyes
    • Bilateral allergic conjunctivitus
    • Bilateral meibomian gland dysfunction (he also referred to 'meibomian gland plugging')
    He advised hitting it with everything but in a more organised way, and so prescribed Predforte, VitA ointment, Opatanol, Thealoz Duo, Loratadine (hay fever anti-histamine), lid hygeine and hot compress. I saw an improvement for about a month, and I think that was because of the Predforte. But now, it's just terrible again, I'm waking 4 - 6 times a night and my eyes are taking it in turns to get infections. The really bad thing about all this medical to-ing and fro-ing is that no-one has ever informed me about treatments which involve the manual expression of meibomian glands, either Lipiflow or IPL or just manual expression, and I've only found out about these treatments because I've spent loads of time doing internet research this week. So for years, I never even knew that was an option.

    I have one more visit to the private consultant left, under the terms of my insurance, and I'm seeing him next week. I want to make sure I'm asking him the right questions, as I'm on my own from that point (or on the NHS, which is very similar).
    • What's the most effective type of manual expression treatment - IPL or Lipiflow, or just manual expression?
    • Treatments look to be very expensive, how much do people normally spend on this?
    • If they do alleviate symptoms, how long does that last?
    • Anything else I should be asking him?
    Thank you for reading this, any advice would be gratefully received.

    Lisa



  • #2
    Mgd probe.


    I suggest getting allergy test. If present get desensitized. They have drops now.

    Comment


    • #3
      Hi Lisa. Sorry things are so rough, but am glad you found this forum as it can be a wealth of information and is a nice supportive group.

      One thing that would be helpful is if your doctors have identified the probably cause of your dry eyes. Have they tested you for autoimmune disease, vitamin deficiencies, diet, hormonal imbalances, allergies (like Drynyc mentioned above), etc.? Many people these days are also getting dry eyes from excessive use of cell phones, computers and video games. There are so many different factors that can cause dry eyes, determining the likely reason(s) could target which treatments may be most effective.

      It's tough not being able to sleep because you have to put drops in your eyes multiple times each night. Your eyes might also not be completely closed while you are sleeping, so the night air gets in your eyes and dries them out further. Are you wearing any type of night protection while you sleep, like EyeSeals goggles, bubble bandages, etc.? I tried several different items and for me EyeSeals 4.0 seals out the air so well, when I wake up in the morning the eye cups are filled with condensation. And when I don't wear them at night, the next day my eyes are noticeably drier. The Dry Eye Shop carries several night protection solutions, including the EyeSeals:

      https://dryeyeshop.com/collections/nights

      Also if you are not wearing moisture goggles during the day to keep out the elements, you might consider wearing those too.

      You might also want to inquire about scleral lenses down the road. It does not solve your underlying condition, but can provide some immediate relief if you are able to tolerate wearing them (not everyone can wear them). Here's some info on them from the PROSE scleral lens (which I wear) website which has a good general description of sclerals to give you an idea of how they work, however I don't think PROSE are available in the UK but I've read other sclerals are available there:

      https://www.bostonsight.org/PROSE/PR...-Used-in-PROSE

      I hope you find some relief soon.
      Last edited by Hokucat; 17-Nov-2019, 02:45.

      Comment


      • #4
        LisaB LipiFlow is definitely an option. I think I paid $700 US in the States. To be honest, I can't say it did much more than using a heat compress that costs $12. People on this forum have had success and, at some point, we'll try anything. I didn't go back in for follow up treatments as they (of course) recommend solely because of the out of pocket price. With that said, it does work for some. Just my two cents.

        Keep up the good fight. This forum is a great outlet as there are people here who've suffered from your same symptoms and have had their lives adversely affected because of these diseases. There are effective options, it's just a matter of finding a doctor you can trust and following through with all recommended treatment routines. Keep coming back to this forum as it's a great mental pickup as well. Take care and keep your head up. We've all battled this in some form or fashion.

        Comment


        • #5
          Lisa, I'm not sure how it works in the UK, but try to find the best dry eye specialist you can. That's the one thing I wish I had done years ago. If you see a true expert, ideally someone academic who has publications on dry eye, one appointment could save you years of suffering. They will have specialized equipment and look for things a typical ophthalmologist won't look for.

          In the meantime, if you're stuck with this doctor, you should go in with a list of what you want to try and insist on it. Be in charge of your own treatment plan.

          Punctal plugs - they shouldn't fall out so easily. You can have bigger ones put in. They come in different shapes and sizes. I find them hugely effective. At the very least, when you put drops in they won't immediately drain or evaporate, so it's more soothing.
          Vitamin A ointment - vitamin A can actually make your eyes more dry (e.g. certain acne medications)
          Anti-histamines - these can also make your eyes drier. If you have allergies then consider seeing an allergist and getting shots/drops.
          Doxycycline - this was good to try, but since it didn't work they should try putting you on oral Azithromycin. Actually, you should try Azyter drops - it's better to take a topical drop than an oral antibiotic. I find these drops to be amazing - they have a unique ability to penetrate the meibomian glands.
          Thealoz Duo - there's nothing special about these, they are just moisturizing drops, there are many on the market to try. Try emulsion drops which have some oil in them. See what works best.
          Lipiflow - I found this to be a huge waste of money, and the dry eye expert doctors I talked to afterwards agreed that it's a waste. You could try a home product like Blephasteam. I haven't used it (I actually just ordered it from the UK) but it makes more sense to spend money on something that warms your glands daily instead of one time.
          IPL - the experts have told me it's worth trying and has some compelling evidence behind it. But it works best on people with pale skin. My skin is more tan so it's never been the best option for me. Make sure they do a manual gland expression immediately after the IPL. And make sure they use it all over your face, and ideally even directly on your eyelids (with proper eye protection.)

          Other questions you can ask - you know you have MGD, but also ask about your tears. Are you producing enough tears? They have the Schirmer's test for that. Are the tears sitting on your eyes properly? Some people's tears just roll off and drain and evaporate so they might have a normal Schirmer's but the corners of their eyes are bone dry. Punctal plugs will help with that. What is the osmolarity of the tears, i.e. are they salty?

          It is expensive, but it's less expensive if you try the right things first. It's much more expensive if you spend years on cheaper treatments and drops vs. seeing the best doctor and getting the gold standard treatments at the beginning. Expensive not just in terms of money, but in terms of life.



          Comment


          • #6
            Hi Lisa,
            i would go to your doctor and asked to be referred (or re-referred if you’ve not been discharged) to an NHS eye consultation : explain the impact your eyes are having on your life- especially sleep and ask to be prescribed ikervis. I was exactly in the same position sleep wise as you less then a year ago and it was having a huge impact on my mental health and physical ability due to never sleeping. I woke up approximately 8-14 times a night to use drops. Ikervis is quite difficult to get for many people and it currently can only be prescribed by the NHS last time I read into it, but if you can, it’s worth asking. I was lucky the doctor I saw understood the effect of dry eye and was happy to give me ikervis, But I’m told that’s not everyones experience. I went to see them thinking I’d never get it and had a good experience overall. More importantly I don’t wake up to use drops at night - Unless I leave my electric blanket on, but at worst that might be once during the night and it seems to be isolated to winter. I hope things get better for you.
            People have recovered, so can we.
            www.twitter.com/EyeGirlfriend)

            Comment


            • #7
              LisaB. Hope you are feeling better now.

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