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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
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
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:
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
- Blephasol duo or on the go i use blephasol / occusoft wipes (or wallgreens version which are the same but cheaper)
- 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.
- 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
- Omega eye, omega 3 – 4 per day (http://www.scopeophthalmics.com/?content=omega-eye)
- Super GLA Borage oil, 1 per day (Amazon)
- Fortifeye Focus, 1 per day (hard to get in UK, ebay only option)
- Flaxseed oil, 2 per day
- 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.
- 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)
- 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.
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.
- 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.
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:
- Private Dry Eye Clinic London (BUPA eye dr, provides medicines, plugs, mibo flow treatment) - http://www.clinicalondon.co.uk/jane-olver/
- Dry Eye Center London (provides IPL treatment, gland expression, lipiview) - http://dryeyecentre.co.uk/ (Caroline Hodd is good)
- Alex Levitt (optometrist, provides Lipiflow, gland expression, lipiview) - http://www.barnardlevit.co.uk/our-se...investigation/
- Dr Wakde (Ayurvedic clicinc in west London) http://www.dr-wakde.com/
- One stop shop for dry eye essentials http://www.butterflies-eyecare.co.uk/
- Mindfulness for health audio book http://www.breathworks-mindfulness.o...or-health-book
- Moisture chamber glasses shop - https://www.eyewear-accessories.co.u...hamber-glasses (This shop has the best range, and they guy is very helpful if you give him a call, he talked me though what might fit, I ordered 4 and then returned the ones that didn’t fit)
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