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Newly diagnosed and really struggling

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  • Newly diagnosed and really struggling

    My story. I am a 46-year-old woman with no health issues previously. I did give up contacts in my 30s as they made my eyes dry and I developed giant papillary conjunctivitis which settled when I stopped wearing them. I had 2 episodes of waking up with a painful loss of vision in my left eye in 1998 and 2010 (On the 1st occasion, following a contact lens splitting in my eye ) which both resolved with ointment and I thought nothing more of it at the time.

    On Christmas Day I ended up in my local Emergency Department I saw an ophthalmology registrar (resident for our US cousins) who diagnosed recurrent corneal erosion syndrome. I saw a different doctor a few days later for ongoing pain, and they said they could see no erosion, (and 3 episodes in 20 years did not impress him!) but said I had punctate uptake of fluroscein in the lower third of my cornea consistent with dry eye disease. On Christmas day I started on drops (hylo-forte) and appointment at night (I’ve tried several). My vision came back 2 days later but I soon developed a really unpleasant and painful foreign body sensation under my left eyelid that was quite distressing, and I started to really struggle to use a computer due to the glare. It just made my eyes burn. For reference I work as a radiologist so stare at 4 computer screens for about 8 hours a day in an arid hospital office environment. Since then, I have seen a consultant ophthalmologist who specialises in ocular surface disease (initially in January) and have attended the dry eye centre in London and seeing a specialist optometrist (in March). My stats are as follows:
    • Schimer test 3 mm right eye, 6 mm in Jan and 4 mm and 8 mm in March
    • TBUT <3 seconds in Jan and 6 seconds in the right eye and 10 seconds in the left with the optometrist in March
    • No osmolality result as the machine was out of reagent!
    • No uptake of fluorescein or lissamine green (so the drops have done something)
    • Mild eyelid telangectasia. Grade 2 MGD (loss 25 – 50%) on upper and lower lids and ‘the odd missing gland with shortening’ in the lower lids and atrophied glands at the outer edges of both upper lids on imaging the glands.
    • I had manual expression of the glands following heating and my oil is clear but with a lower than ideal volume
    • My blinking is a bit rubbish with lots of partial blinks
    • Rest of eye normal
    • Negative thyroid function and autoantibody screen (so no sjogrens)

    So, to summarise I have been diagnosed with a mixture of aqueous deficiency and MGD and the opinion is that the aqueous deficiency is the main culprit for my symptoms.

    In terms of treatment I heat my eyelids with a blephasteam twice a day with gentle expression of oil and clean my lids with bluffer clean wipes. Given my symptoms are persisting despite frequent (45 minutes to one hour at times )installation of drops, I'm currently on a short course of topical dexamethosone and have started cyclosporin in the evening (ikervis in the UK – so once a day dosing is the norm).
    if this does not improve my tear volumes in a couple of months, the next step will be consideration of punctal plugs and the optometrist has also suggested I try IPL in the future to improve my gland function and help prevent further atrophy. The dry eye centre do manual gland expression after heating rather than lipiflow so I will have this done again (it felt so good!)

    My reason for posting is that I am struggling very much with eye pain , I'm unable to currently work due to pain and I'm on sick leave and given the pandemic and ongoing lockdown in the UK, I seem to spend all my time in the house on my own thinking about my eyes which is not good for my mental health. I struggle with cold and windy weather which limits outside time although luckily it appears spring is finally approaching. I'm also limiting screen time wherever possible and no more than two hours of TV a day if that. I'm listening to a lot of audio books and podcasts. The reason I'm struggling is I think I am doing everything right but I'm seeing little tangible improvement. I still have real pain in my left eyelid with the blephasteam (it was worse with the warm compress). I did have some improvement when I started the dexamethasone two weeks ago but I appear to have regressed (I’m still on it – tapering). I saw my ophthalmologist today who said my corneas look intact and suspects the worsening burning and watering I am getting is because I have not been using the eye drops quite as much as I should but he says this is common: if people get a little improvement they use the drops less. I do not think the increased burning I am experiencing at the moment is the ikervis as I didn’t have it when I started it. It stings and makes my eyes water for about 30 minutes but then it wears off. The watering from it is improving.

    My main issue is at night. I was able to sleep through the night when all of this started but now, I wake at least once or twice every night and it honestly feels like they are getting worse not better in this respect. As I mentioned, I have been advised to use night ointment and I know there is a difference of opinion with regard this. However, the one night to date where I forgot to put it in and fell asleep as I was exhausted, I awoke at 2 am with intense pain with stuck eyelids. Given the ongoing foreign body sensation under my eyelid on the left I tried hydromed sensitive ointment which does not contain lanolin but again this does not last the night - I awake with intense pain under both upper eyelids. This also happens with the hylo-night but that is stickier, and does seem to last longer. Either way when I awaken my eyes are red, painful and watery. I do not know whether this is due to my eyes being really dry or as a reaction to the ointment but they just don’t look healthy! It does eventually settle after the installation of my lubricating drops although it's burns for a while and then sometimes, I can get back to sleep. I have tried sleeping with moisture chamber goggles. I find that although these help, I'm still waking in painful. Given I am struggling with goggles and ointment, I am scared to try a gel with the goggles.

    When I asked my optomologist if my little relapse over the last few days whilst on the steroids could have undone their good work, the answer was possibly so I feel a bit despondent about this and I'm beating myself up mentally . Part of me feels I may have undone my best chance of healing as I cannot stay on the steroids for more than a couple of weeks (my Inter ocular pressures were measured today and are still in the normal range but I don't want to push it as I am quite myopic : about -5 which increases the risk of steroid induced glaucoma). On the other hand, I think it is unrealistic to expect that I will never make another slip up in the future when life gets in the way. I'm crossing everything that the ikervis works for me and kicks my lacrimal glands up the proverbial

    My other obvious source of distress is how I go about returning to work. It is not realistic to simply say ‘get a job that does not involve computers’. I have been a doctor for 22 years and a radiologist for 17. There is very little I could do at this stage in my career that wouldn't involve computers and I'm also the main breadwinner in our household with a mortgage to pay. However, I acknowledge that screen time has almost certainly led to my dry eye disease, particularly over the pandemic as I have been working longer hours and spent more time on the Internet then I would usually do after work. Add in mandatory mask wearing in hospital and it is a recipe for dry eyes. Therefore, I've made the difficult decision that once my sick leave is over, I'm going to try and return to work part time - we can just about afford the very large pay cut and if I work mornings only it should help. I have invested in a pair of occupational varifocal lenses within moisture chamber glasses although prior to my going off sick, they were still not allowing me to work pain free. I'm also looking to see whether I can work from home as the humidity in my hospital is approximately 37% as I have measured it with a hygrometer! For administrative tasks, I have seen that you can buy a e-ink monitor as a plug in secondary monitor, although this will not help with my main job

    I guess my main questions to the forum are:
    1. How the heck do I get through the night? I feel that my eyes are not going to get better while I keep giving them a battering every night. It is not healthy to wake up with bright red, streaming eyes. Is this dryness? Is this irritation from the ointment? When I raise this with my ophthalmologist, he did not think the latter was the case and suggested it could be worse with gels as they would not last as long.
    Any tips on how to sleep in the moisture chamber goggles (eye eco eye seals) comfortably? I suspect some of the difficulty may be because I am a side sleeper and when I lie on my side it is pushing them across my face slightly reducing the seal and letting air in. I could try learning to sleep on my back although I swear I will hate it .
    I have tried tranquil eyes but do not get on with them, the fit is not as good and I do not like the pressure on my left eyelid at all - I find that very painful. I think I saw on here, a tip for cling film (Saran wrap in the States?) under a regular sleep mask which I will try. I asked my ophthalmologist about taping (and if there was a risk from reduced oxygen to the eye) and he said it was fine - advising a single piece of tape from upper to lower lid – so not completely sealing the whole of the length of the lids. He says he thought my eyelids closed properly but clearly, I could still have a bit of nocturnal lagopthalmos. If I do it might explain why they are drying out despite ointment AND goggles.
    1. I worry that if the ointment is irritant, it seems to hang around in the eye for quite a time the next day even with washing my phase and cleansing my lids. Would a preservative free Saline wash in the morning help to remove any residue? I'm genuinely worried about stopping the ointment and having to deal with the pain that happens when my eyes get dry at night and the sticking eyelids, although I do not think I have had any further corneal erosions I have not lost any visual acuity and the pain is different , not as intense stop calling out erosions really, really hurt !
    2. Is it NORMAL that dry eye can come on this rapidly and progress to this degree so soon. Prior to the 25th of December 2020 my eyes felt fine and I had no problems at night, I was able to do my job and I was not aware of any dryness. It genuinely feels like I suddenly woke up with this and it has got steadily worse to the point where I am now on pretty strong ocular anti-inflammatory drugs, off work and considering having bits of silicone shoved in my puncta! I seem to be shoving all sort of stuff into my eyes I've yet to see tangible improvement. I'm only on day 15 of the ikervis so I know I have a long way to go with this. How did I go from normal (well – not normal if I had corneal uptake, I just had no symptoms) to being on a trial of cyclosporin as the drops aren’t controlling the aqueous deficiency in 3 months? That said the evidence is to treat mild and moderate dry eye with anti-inflammatories early to prevent progression, so I think it’s the right thing to do and it seems to be safe long term from my reading. I am an avid reader of scientific literature. This all started 6 days after I had my first covid vaccine and it was so sudden I have had people ask if it’s a side effect. To which I think definitely not. Eyelid telangiectasia do not grow overnight. The ‘inflammatory hit’ from it could I suppose have triggered a flair up of a pre-existing dry eye disease I didn’t realise I had but that is it. But the fact that 6 people have asked me shows how sudden it all was. Can it happen this quickly or am I just weird?
    3. What is this ongoing damn eyelid pain in my left eye?! It’s part foreign body sensation, part sharp pain and I can localise it with a finger. Heat makes it hurt (hence buying the blephasteam) and I could not cope with the heat and pressure of a warm compress on it. Pressure makes it sore too. Yet when anyone flips my eyelid there is nothing to see! And my cornea is intact – no epithelial microcysts, erosions and no epithelial dystrophy. The ophthalmologist thinks it may be due to corneal neuralgia particularly given I now have ‘pain without stain’ i.e. my corneal surface is intact, and my symptoms are worse than my signs. He is still treating my symptoms, however. This worries me as I have read that it is quite hard to treat, can be debilitating and makes you miserable. I guess I will know in time when the other treatments work or do not work. Can you have severe symptoms with no abnormal uptake in your cornea or conjunctiva? My TBUT and Schirmer tests show that my disease is real and not in my head.
    4. Any tips on coping with the life altering nature of this? Sometimes the pain in my left eye in particular (despite the numbers being better) has been so intense it has made me cry which doesn’t help as it’s the wrong kind of tears. I should be thankful I can still cry though. Walking away from a still growing career to significantly cut my hours will be a huge decision, if I do it. And I think realistically, I have to for the good of my ocular health to reduce the chances of significant progression. My mum says – ‘it can’t be worse than it is at the moment for you’. And I say – oh but it can unfortunately. And dealing with the fact that you can be disabled by something and no one would know? I worry some colleagues may think I am over reacting
    5. Has anyone tried the e-ink monitors from Dasung? They are really expensive – especially shipping to the UK? Do they help?
    6. I’ve done everything I can think of, read as much as my limited self-imposed screen time ban will allow and sought out experts privately. Thanks to the wonderful NHS but slightly battle weary at the moment I can at least get the ikervis on repeat prescription. I have a sympathetic occupational health doc and work are understanding. But is there anything I have missed or need to consider?
    PLEASE TELL ME IT GETS BETTER and that I haven’t ruined everything by letting myself get a flair up on the steroids. I am really struggling with the ‘up and down’ nature of this, the uncertainty and the absolute fear of progression. Ive done everything I can to get better and I am not which is the nature of chronic disease and I am honestly really struggling with that!

  • #2
    And one final question. Any UK members have recommendations for drops to stabilise my tear film? The hyaluronic acid in the hyloforte is lovely and fine for the watery bits of my tears but it doesn't last long so I think I'll have to use something else in addition. I've just been given a sample of cationorm (retain MGD in the states I think) and so I will try that. Anything else preservative free? Optive plus was suggested. It contains purite which allegedly disappears on contact with the eye.


    • #3
      Hello Midlands Lass. I really feel for you and have been through something similar. I also live in the UK (Wiltshire).

      First, you could try Cationorm eye drops (preservative-free) which contain a lipid component. I use these alternatively with Theoloz Duo or Hylo Forte, so you still get the advantage of SH. It's my ophthalmologist who recommended the Cationorm for MGD. If you can't find them in a chemist, you can buy them online through Butterflies Eye Care which I use for all my drops/ointments and can thoroughly recommend.

      I got catapulted into severe dry eye disease as a result of cataract surgery in February 2020. Apparently I had a toxic reaction to the preservatives used in the after-surgery drops - and am one of the unfortunate few who will never get fully better. I was in bed with my eyes shut almost all the time for more than two months. Every time I opened them it felt like slicing them with razor blades. BUT it did get gradually better and today, although they can be uncomfortable and it varies day by day, I would not call them painful - although they can occasionally be debilitating. The foreign-body sensation under the eyelid is a symptom of dry eye and it's horrible. I had it under my right eyelid for months - but don't often have it now.

      I had to work hard to convince my ophthalmologist that I'm one of those people whose eyes just can't take hot compresses. Every time I tried one, my eyes got worse for the next four days. So I bought a Blephasteam hoping that the lack of physical contact would make a difference. I tried it once. I enjoyed the session and my eyes felt nice and moist afterwards. Then, after about half an hour, I felt them drying up - as if water was being sucked out of them. And that led to another four-day flare up. So I came to the conclusion that my eyes just don't like heat and I can't use that method of treatment. A few other people on this forum say the same. Are you one of them? In which case it might be worth stopping because it could be doing more harm than good.

      I use Xailin night ointment every night and find it keeps my eyes very comfortable. I know the jury is out as to whether this clogs the glands or not - my ophthalmologist thinks not - but my improvement has continued despite nightly use of the ointment for a year now.

      What I would say is Hang in There. Progress is slow but, with a good eye doctor, you have every chance of being significantly better in time. Also, the shock of suddenly being plunged into this painful condition does wear off. I had severe anxiety while in bed for those months. This was greatly helped by a prescription of Pregabalin which I am now weaning myself off. IPL is the next option and I'll probably be trying this soon.

      And good luck too with your career decisions.


      • #4
        Hi Midlands Lass,

        I read your whole post. For what it's worth, I really feel for you, especially the stress of worrying that your colleagues will think you're overreacting (I had this too). You are a doctor, so I apologize in advance if I say something that's already obvious to you.

        - You didn't mention anything about diet, so I feel I should at least mention it, since diet is huge for many people on this forum, and can be overlooked by ophthalmologists. If you haven't experimented with this, I think it's really worth trying some kind of anti-inflammatory and/or elimination diet. I'm sure you're already on fish oil. I noticed a difference going from 1000 to 2000 mg per day.

        - Second, if you are on the fence about it, I would definitely try IPL. From my own experience and from talking to doctors and other patients, IPL seems to improve meibum secretion quantity/quality in addition to reducing telangectasia/inflammation. Subjective symptoms after IPL do seem to vary. I have worse symptoms for a week after IPL and have heard from some patients that it took 4 treatments to notice an effect, though this is uncommon.

        - Since you said your blinking is a bit rubbish... mine was too, and I can say diligent blinking exercises have helped me so much. Over time I have developed better neuromuscular control of the small muscles in and around my eyelids, which has helped my blink and laghopthalamos.

        Beyond that, gaining better control of these facial muscles has helped a lot with my pain as well as my blink. Let me know if you want more info on the specific exercises I do (e.g. massaging orbital bones). I discovered I was holding a lot of tension in these face/eyelid muscles which was inhibiting my blink and proper meibum secretions. Learning to relax these muscles and trying to "accept" the pain has actually decreased my pain overall. This sounds kind of woo-woo but I promise I am a very scientific person.

        I read a ton of medical papers after my diagnosis, and none of them discussed this, but from my own experience, I really do believe there is a negative feedback cycle with dry eye where chronic pain leads reflexively to chronically tensed muscles in the eye area, which affects blood flow, inhibits healthy blinking, and worsens symptoms.

        - When my dry eye was at its worst, I would wake up with very sore, red, and dry eyes, despite sleeping in a very humid room. I am sensitive to many substances, so I never tried nighttime ointment or gel out of fear that it would cause irritation (only had this luxury because my dry eye isn't/wasn't as bad as yours). Re: irritation from ointment, I don't know of any data on this; it seems really hard to tell.

        - Try to sleep on your back if you can. I tried the Eye Eco Eye Seals but hated the plastic on my skin. I use the Eye Eco Onyix mask which works well for me, but only when it stays on. Taping seems worth a try.

        - Are your 4 computer screens at work good quality monitors? I find LCD screens vary a lot in quality, and the expensive ones-- typically not what they give you at work-- are easier on my eyes. The ASUS PB278QV has worked well for me. Generally IPS > OLED > LED, TN. Maybe see if you can buy & bring in your own monitors to work. Have not tried an e-ink screen yet but I've heard great things.

        - Re: 2. it is normal that dry eye can come on this quickly. I found a paper that said corneal nerves first respond to disequilibrium by becoming less sensitive, which can mask initial dry eye symptoms. Often, the symptoms don't become noticeable until they're already significant. If you want I can try to look up the source.


        As you put it, the absolute fear of progression is so real and I still live with that. The mental aspect of dry eye is at least 30% of the battle. It doesn't go away but my outlook on life has changed, and I'm not so afraid anymore. For me, it just comes down to accepting that life is temporary, and doing my best to take time to enjoy the small things and be grateful however I can. I keep a log of my symptoms and treatments, and limit the amount of time I'm allowed to think about my eyes (to avoid ruminating). Psychotherapy also helped me once I got over my own stigma and tried it.

        FWIW I think you absolutely should take whatever time you can financially to focus on your health, especially since you are only 46 and had no health issues prior to this. You have to take the very real chance that things will improve and trying to work part or full time in the next few months could jeopardize that. If your dry eye is capable of improving to a manageable level, you may still have decades of work in front of you. I say this in part because I regret not doing more, sooner, for my own dry eye, and because I remember the chronic pain really impaired my long-term decision-making.

        I have friends who work in medicine so I know it can be a very unforgiving culture for doctors who fall ill. I would try to bias in the other direction and do more self-care than you think you need. I realize in the end it probably comes down to finances, and how much time you can afford to take away. Just my $0.02, you know your situation better than I do.

        Last-- maybe look into the Regener-Eyes biologic eye drop? I started it a few months ago, seems to be helping.

        Happy to elaborate on any of this.