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  • My MGD story and tips

    Hello friends,

    I have been suffering with MGD and dry eye since Jan 2015, so 18 months. It came on out of the blue, became extremely severe quickly and turned my whole life upside down. I have been though a lot to date, so wanted to post about my experiences and tips as reading this forum and all you experiences has helped me immensely on my journey. I am not better by any means, but i am learning to cope with the disease and the associated anxiety and depression, which in my opinion can be even worse than the disease itself! Also my experiences are from the UK, where we seem to have less treatment options than the USA.

    Pretty long post but my key takeaways are:
    1. get moisture chamber glasses asap, they really help
    2. get help to deal with the depression and anxiety asap (but use medicines with caution)
    3. keep looking until you find the right eye dr that specialises in your condition - but you need to be well informed to ask about the treatment options you want
    4. try as many things quickly as a lot wont work anyway and everything takes ages so stick with it

    About me:
    I am 33, married just before this set in, live in London and enjoyed a very successful and executive career in the city, i was always busy, always travelling and always stressed! I am currently on sick leave from work due to how bad my condition has got. and i haven't worn make up for 18 months! my eyes used to be my best feature and now they are the worst.

    My condition:
    Started with a huge cyst in one eyelid, then my lipid layer started to change and i felt a constant greasy film over my left eye, then one day i woke up and had very blurred vision in my left eye.
    After this, blocked glands, toothpaste secretions, dryness/burning and constant foreign body sensation. Both eyes but the left is much worse for some reason (also the eye that had the initial cyst). Recently my eyelashes have started to fall out too.

    1. Seeing Drs:
    I initially saw 2 eye drs including one at Moorfields and one at London Bridge hospital (both via BUPA - UK private healthcare which i have through my work) - but both did not diagnose the condition, or look at my tear film, glands. The guy from Moorfields dismissed me and said "you have little bit of blepharitis, just go home and clean your eyes, there are people here with much bigger eye problems, we wouldn't bother with someone like you" - can you believe it! He was not an dry eye specialist though, which is the point.

    - You must find a specialist in this area (i searched for one in MGD, eyelids, tear film), and if you don't think you are getting proper treatment, go to another. I am on my 7th eye dr now.
    - If you are in the UK try and get an appointment with the Moorfields specialist Dry Eye Clinic as they have access to more medications an anyone else.
    - Ensure your dr looks at the glands in detail and expresses the glands to provide relief and examine the secretions (if they don't, find a new dr)

    2. Medications and treatments:

    Hot compress & Massage
    • I use blepsteam goggles and MGD microwave bag: even if you think it doesnt help, i believe you must do this regardless to stop the oil backing up and getting worse.
    • I do this 2 or 3 times per day. I find that squeezing the stuff out of my glands gently with a Q tip each time i do hot compress to clear them helps
    Lid hygene - 2-3 x per day
    • Blephasol duo or on the go i use blephasol / occusoft wipes (or wallgreens version which are the same but cheaper)
    Medicines
    • Took Doxy (20mg, then 40mg, then 100mg) in 2015 for about 8 months but only helped very marginally - like 10%)
    • This year I was on azithromycin tablets and eye drops for 1 month and Lymecycline tablets at the same time for 8 months - these reduced inflammation and redness on lids, but glands are still blocked!)
    • Tried loads of drops but for now I find these the best: Clinitas hydrate gel, Xalin gel & Xalin night ointment, Moorfiends Emustil Eyedrops and Systane balance. The last 2 replace the lipid layer so good for MGD sufferers who have tears but no oil. Can get them all on Amazon.
    • There are lots of drops out there and they are different, so try out a whole load and find the combination that works for you. They will not make you better as such, but you must use them to stop further problems of your eyes rubbing on your corneas!
    • Do speak to your GP to see what you can get on prescription. I recently found out that I can get Belpclean wipes, clinitas and Emustil on prescription so I don’t have to pay hundreds of pounds on eye drops anymore! You can also get yourself a annual prescription subscription if it works out cheaper.
    3. Other treatments tried:
    • Lipiflow (worked for 2 weeks, then glands become blocked again but worse than they were before, after this is when i got signed off work!)
    • MiBo Flow (less invasive than lipifow and c£75 so you can try it out and see if it works for you, didn’t do much for me)
    • Punctal plugs, just had lowers put it, can’t tell much difference as yet but I would say get them put in sooner, I waited a long time as I thought it was a really big deal, but its not really. should have done it months earlier
    • Blephex - as i don't have belpharitis or scales on the lashes this was a bit pointless, but the optician kept insisting i do it and taking my money of course!
    • IPL - wanted to get this but i have dark skin and they said i was not suitable
    4. Supplements (choose good quality ones from wholefoods or ask your doctor)5. Alternative /Herbal medicines (been on these 2 months, again only a small improvement seen)
    • I have been seeing an Ayurvedic Dr in London, but bare in mind with the approach they treat the patient AND the illness so everyone treatment plan will be different
    • Triphala Churna powder (1 tsp, with 1 tsp ghee & ½ honey at bedtime)
    • Thriphala eyewash (1 tsp boiled in water, strained and used 2x per day - from my Ayurvedic dr)
    • Amla & liquorice, Haritaki, Daruharidra tablets (from my Ayurvedic dr) all herbs known to help eye problems
    • Washing eyes with warm ghee every other day (avoid the wind after you do this). Put ghee (made from organic butter at home, see recipe on YouTube) in an eyewash glass, recline and blink eye slowly c.100 times. Repeat on other eye, wipe eyes and then lie down for 15 mins.
    • I have also ordered Triphala Grita from ebay and will be trying this as well (it has more herbs than just the churna)
    • I also had 8 weeks of acupuncture. I found it stimulated tear production, but as my problem is no oil it wasn’t that helpful overall, but it did also help with my stress levels.
    6. Diet (if it doesn’t help your eyes, it will help your weight, skin and general health!)
    • Drink loads of water, 2 litres per day or more. Throw in a couple glasses of coconut water per day
    • Cut out dehydrating items: alcohol, tea, coffee, caffeine (e.g. diet coke) but drink herbal teas - green tea and chrysanthemum flower tea both meat to be good for the eyes
    • Eat foods high in omega 3 & Antioxidants & potassium (oily fish, flaxseeds, seeds, berries, green leafy veg and bananas)
    • Eat less inflammatory foods (meat, gluten, processed foods & junk foods, also reduce sugar)
    7. Depression and well being
    • My GP was very concerned about my mood and recommended anti-depressants. I refused, as dry eye is a side effect of many of these medicines.
    • I downloaded this audio book called “mindfulness for health” – it helps people dealing with chronic illness, pain, stress and depression. It is so effective that it is endorsed by the NHS and given to people suffering cancer etc. it is an 8 week guided course, you listen to it and do meditations at home. This book has helped me immensely, it has changed my whole life and helped me cope with my illness. The stress and anxiety I was feeling has greatly diminished and I feel a lot more positive. I cannot recommend this highly enough – please give it a try
    • If you are able to seek counselling for your condition I would highly recommend it. Most GPs have support for patients with chronic health conditions and yours is no different
    • Do some exercise. It helps deal with the stress and I feel it helps my eys too. I do Yoga every day at the gym or at home if I can’t go. It really helps clear the mind, calm and refocus and it fits in very well with the mindfulness course above.
    Be kind to yourself! You are going through a lot. Can you take some time to treat yourself to a wellbeing experience e.g. go a spa or have a massage? I find going to the steam room at the gym after yoga is good. buy yourself flowers from the supermarket - Anything that brings you some joy because you deserve it!

    Do talk to friends and family and let them support you. I thought that no one could understand, but as I started opening up to friends I learned that many had their own health struggles and felt the same as me in their own ways and it helps to know you are not alone.

    8. Eyewear day and night
    • Get yourself some moisture chamber glasses, these are the one thing that have helped me the most. I can’t do without them and wear them all the time. I wear 7 Eye ventus & Wiley X sleek. you can get prescription lenses put in if you need them
    • They must form a seal around your whole eye without gaps to stop evaporation, I even went to the beach with these on and it was great!
    • Cover your eyes at night to stop them drying out. I have tried loads of things but what works best for me is tranquilleyes – I remove foam inserts and replace with cotton wool pads soaked in boiled water or in the Triphala eyewash. I put in Xalin night ointment before putting the goggles on.
    9. Work and career
    • If it is possible for you, talk to your employer to see if you can get any time off work to get this under control. My office offers a sick pay scheme and I was able to get a few months off with pay. When I explained to them what had happened they were genuinely concerned and very supportive. They had seen me suffering at work the past year. My GP was able to write me a letter recommending that I take time off which helped. The HR director had suffered blepharitis in the past so she understood and helped me get the time off.
    • I will be going back to work next week, My eye dr has written a letter for me to work part time, time the mornings only, for the next 6 months, and advised that I should work from home as much as possible to stay out of the aircon which makes me worse. My office so far says they are supportive of this.
    • Same goes for school or college, speak to them and ask your dr to support your cause.
    • If you work in an office, working at the computer for long hours in the air con is THE worst thing you can do for your condition, and you will not recover.
    As this is a long term health problem, you may want to start thinking about any changes you may want to make in your work life balance for the future. Is there something you can do where you can work from home? Or changing companies to one that will let you do flexi time or work from home. You don't have to do it right now, but in the long term changes will benefit you

    Can you consult your office’s health department to see if there is anything they can do for you, like buy a humidifier for your work area, fit your screen with glare filters etc. At the very least wear moisture chamber glasses at work to protect your precious eyes.

    Take regular breaks when working on the PC, I have installed an eye-break app on my computer that forces me to take a break every 20 mins! Get new out of work hobbies that are not internet surfing and TV to give your eyes time off when not at work.

    10. Focus on being positive for the future

    Although I have lost a lot through this condition I have also gained many things – a new love for fitness, healthy eating and cookery, swapping computer and TV for audio books and music, spending time at home and gardening – something I never got to enjoy as I worked so much. Yoga & meditation have changed my outlook on life and made me a calmer and better person from within with greater compassion for myself and others. I value the friendships of those who have been there for me though this time more than ever and it has brought us closer. It has made me reconsider my priorities in life for the better and to enjoy every moment including the little things that went unnoticed before.

    I am not better yet, not even close but I do feel positive about a new future. What doesn’t kill you makes you stronger! Good luck to all of you.

    Some links for UK:
    Last edited by skeeterlondon; 17-Jun-2016, 10:20.

  • #2
    You mentioned drops with oil,dont you have too much oil?

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    • #3
      I thought i had dry eyes but my tear break up time is normal. Its the mgd,posterior bleph irriateing my eye causung dry eye symptoms,do you know your tear breakup time?

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      • #4
        Sorry about all the posts but im confused,you mentioned the greasy eye in the beginning but now sounds like no oil. Sounds like too much oil to me. I have too much for a few days after doing compresses etc

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        • #5
          Hello, no i definitely have no oil, it can be seen in the lipiview test. My dr said it can often can start with that, too much to signify a change in the composition of the lipid layer (when it was changing from thin oil to gunky and thick, before it ceased up). my TBUT is 1 second! Everyone seems to have different symptoms with this which is why its so hard to cure oneself!

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          • #6
            .............
            Last edited by savino; 26-Mar-2017, 10:39.

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            • #7
              Skeeterlondon, Wonderful, comprehensive post...Thank you. A lot of great ideas and powerful suggestions. My situation is 4-5 months into a very noticeable condition starting with the painful scratching of corneas due to low oil production. 3 doctors to date. Have had punctal plugs, Lipiflow, daily lid Q-Tip lip scrubs, daily hot wash cloth treatments with mask attached for longer heat, daily Artifical Tears (oil based both preservative free and otherwise), steriod drops and ointment, Doxy, fish oil and flaxseed oil, large quantities of drinking water, exercise, etc.

              As a consequence from all this effort the Cornea scratches have healed, a few new oil glands have opened on bottom lids but really the improvement has been very slow and very disappointing. Seemed to have reached a stalemate with this unwanted foe. It has been suggested to me that starting Resitis (which of course are marketed to increase tears but the hope is they also somehow change/open oil gland ducts to produce oil in some fashion...). OR...a more or less permanent regiment of low doseage Azithromycin taken 2 weeks in a month's time and then break from it until the following month, etc. are things that they may try in the immediate future for my symptoms.

              So,,,,,I am mulling those possibilites over but also am considering other less conventional treatments such as:
              1. Amniotic sterile fluid eye drops (These are stem cell stimulating eye drops for dry eye symptoms), 2. Vitamin A eye drops or ointment, 3. The possibility of Growth Hormone supplements or Growth Hormone releasers.
              Have you tried any of these 3 possible treatments or since you do seem very analytical and intuitive, do you have opinions or knowledge about any or all of these 3 possible treatments for our symptoms?

              P.S. My wife and self have been to London (and then on to York and Thirsk, etc. to spend time in "James Harriott country") several times and we can't wait to get back to all those places from our permanent west coast home in the states...Looking forward to your reply and sincerely wish you well on your attempt to return to work part-time next week. Chuck

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              • #8
                @ chuck

                Sorry to hear about your situation. i agree we do a lot only to see very small progress. I think that is how it is with this terrible disease, but some progress is progress none the less! In the UK we seem to have access to less treatments i think. For example we don't have restasis here (not approved by the UE). I asked my doc about that and she tried to find out if she could source cyclosporine drops but told me that they were unobtainable here. Same for the serum drops, it says on the NHS website that that is an option but when i asked about it all i got was a head shake... very frustrating. It is possible to get hold of these items i suppose but i dont want to be taking drugs without oversight of a dr here so thus far i havent explored those options yet.

                my experience has been that each doctor only offers 1 treatment and they push that, and when that fails they tell you to go away with your eye drops and hot flannel! why do they not offer a wide range of treatments and then either compound them or offer the right set to the patient? as a result we have to go from one dr to the next trying the next treatment with no consistency or oversight by one single doctor...

                i have not heard of vitamin A or growth hormone for MGD? I was on Azirthromycin tablets for 1 month and the eyedrops at the same time, its a hefty dose but it didn't help me. I have been on antibiotics for over a year now and i don't have any inflammation, redness or blepharitis on the eyelashes - so for me i dont believe this problem is Bactria related. Any bacteria in my body are long gone with all this medication!

                Keep trying different options, hopefully you should find something that helps you. The mindfulness course has helped me a lot to reach this more balanced state - just two months ago i was a total basket case thinking my life was over.

                savino

                i have never had eye surgery or been on acne medication but i have been on contraceptive pill for about 15 years (came off but no change), and also i take levothyroxine for under active thyroid and i used to take a lot of antihistamines for skin allergies - any of these could play a role in my MGD. My doctors say my hormone and thyroid levels are "normal" however

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                • #9
                  Hi Skeeterlondon! Thank you for your reply and empathy. I appreciate that. It's kind of an irony that just today I received a small package containing a Vitamin A Eye Ointment from London. This product was available on Amazon. I have no idea of it's effects and will be using it for the first time shortly at bedtime. Intuitively, it seems harmless enough, after all it's just a vitamin in a paraffin base, etc. A few historic prior posts on this very helpful site which we are currently communicating on (dryeyezone.com) were somewhat positive and so I will give it a try in my worst symptom left eye. I don't wish to violate the conditions of this website portal and hence I'm hesitant to say anything more but I will communicate back if I feel that the ointment has actually helped open and reactivate some of my oil glands.

                  Although of course I agree that all of us have different causation for our dry eye conditions, still I can't help but feel that there is some hormonal reason for most oil gland deficiency. I too have had blood test which verified that my hormone levels were, in general, within completely normal ranges. But I think that brushing hormonal factors off as a non-factor is probably an over simplication... There are a lot of creditable, documented studies that even small amount of chronic androgen (hormone) deficiency is associated with meibomian gland dysfunction.. Females seem to respond to hormone eye drop therapy better than males although most benefit. The David A. Sullivan, Ph.D. led Harvard, Boston Mass. USA studies several years ago and other similiar studies were on this path. However, the mainstream of doctors have not seemed to embrace the studies...Hormone eye drops are a "novelty" in the USA although apparently available with a "off label" prescription from a doctor to a "compounding pharmacy". Seperately, The stem cell stimulating eye drops may be effective, again I have not tried them although I did discuss the subject with one of my doctors earlier today and got a non-commitment attitude from him...Wanted to defer to the eye specialist... yada, yada, yada...

                  And so, we are left one more day wondering and pondering... like the old American television show title when it comes to traditional medical advice regarding dry eye and oil gland blockage..."Who do you trust?".

                  Have a good day.

                  Chuck

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                  • #10
                    Skeeterlondon ~ Thank you, wonderful kind helpful post. Very interested in your mindfulness for health anxiety course.

                    Cyclosporine/ciclosporin is easily available as Ikervis in NHS England, Scotland, Wales (search Dryeyetalk for 'Ikervis' for more info), see:

                    - British National Formulary
                    - search '[your NHS health trust] formulary eye'
                    - http://www.moorfieldspharmaceuticals...-specials.html Moorfields Pharmaceuticals Ophthalmic Specials
                    - as Optimmune

                    Moorfields gave us Optimmune as a 'steroid sparing agent' for longer-term use (paediatric), but we managed to wean off steroid eyedrops before needing it.

                    Autologous serum drops are supplied NHS after application to a health trust Drugs Committee, looks like. Some people here get AS or platelet rich plasma (PRP) eyedrops from Vissum Eye Institute, Alicante.
                    Last edited by littlemermaid; 18-Jun-2016, 17:45.
                    Paediatric ocular rosacea ~ primum non nocere

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                    • #11
                      Thanks for that. I have been going private not Nhs which is why maybe they said they couldn't get hold of it. Perhaps I should get an nhs appointment as well then.

                      Do anyone know if restasis will help my glands and mgd? Also I now have plugs and read that it doesn't work with those with plugs. Is it worth trying?

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                      • #12
                        Hi Skeeter,

                        Thanks so much for this helpful post.

                        Yes - restais/ikervis is meant to be one of the best treatment for MGD. It reduces inflammations which helps prevent them getting blocked up. You should be able to to get this from the NHS - although it depends if you area/CCG funds it. Nevertheless it's only £79 a month, which isn't bad.

                        I am looking to try the dryeyecentre to get gland expression done. Did you ever have gland expression done? Was it helpful? Not sure if I will be eligible for IPL, since I also have dark skin.

                        I had mibo thermoflow done which was useless. It basically warms up the oils. The doctor didn't even express them, so I guess it all just solidified back up. Waste of money My doc charged me £150 for it - yeah I won't be seeing that guy again.

                        I have found ocusoft plus helpful. It reduces the bacteria load which reduces inflammation and in theory helps oil flow. It also pretty much got rid of my stye. So I swear by it.

                        Definitely find a supportive NHS doctor to get them to prescribe you things. Sorry to hear your initial experience at Moorfields was bad. Mine was bad too, so I steer clear of them now. There is nothing more anxiety provoking than a bad experience when a doc dismisses your problems. Certainly made me feel scared and all alone.
                        Living a Lasik nightmare - Wake me up!!

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                        • #13
                          Ooh forgot to mention. Krill oil! 1000mg a day. Apparently this has better absorption rates than standard fish oil. My TBUT has gone up using this.
                          Living a Lasik nightmare - Wake me up!!

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                          • #14
                            Hi Brendan here from manchester doing the same type of research into dry eye with a Proseesor at the Manchester Eye hospital. I notice you have not replied since june 2016. Are you any better. Are you a member of the dry eye zone on facebook as i am under Brendan Murray

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