Reaching out for help!

I know this is a long post but it would really mean a lot if someone could take the time out of their day to just have a read and maybe offer some advice.

I have visited this site for years and never had the bravery to sign up and talk about my journey - I find, like most of you must do, it overwhelming the amount of treatments and home remedies out there that you feel are worth trying. After seeing several specialists and trying a range of treatments, my eyes feel worse than they ever had.

So I have decided to finally bite the bullet and sign up in the hope someone in this wonderful community may be able to offer some help.

Here is the timeline so far:

October 2017 - I visit the opticians for a routine appointment and the optician notes that it appears I have mild blepharitis. I have never heard of this before so I am given blepahosol ointment and told to do a warm compress and I then purchase a gel mask to heat up. I use it that night and subsequently go into full panic mode as my vision blurs for the best part of an hour (I know now this was oil being secreted). Please note up to this point I had never felt any particular dry eye symptoms. The only I can recall is a month or two before purchasing a lubricating eye drop as I was making frequent trips on the underground and the dry air was affecting my eyes.

I am not very compliant with the treatment as it just seems to aggravate the skin around my eyes (which I had never noticed before is slightly red and seems to have spider veins in them. They were pink in appearance and not unsightly)

I largely forget about blepharitis and go on with my life.

January 2018 - I go to the GP (I can't recall why) regarding my blepahritis - I believe it was because now I had noticed the redness of my eyelid margins and was concerned about the asehtetics, I had no adverse dry eye or blepharitis symptoms. I am instructed to use a cotton wool bud and baby shampoo and wash my eyelids.

I do this for several weeks but my eyelid margins are now red and irritated, I still do not recall any dry eye symptoms (such as light sensitivity, burning etc)

April 2018 - I begin using the gel mask more regularly but I find that the following day it is drying my eyes. I begin to suffer with burning sensation the day after I use it.. I discover the dry eye zone forum and purchase wet ones out of desperation but do not go through with using them as it just does not feel right. My eyelids are definitely more red and irritated now, with more spider veins prominent giving me an almost 'rabbit eye' look. I go back to the GP and finally get referred to an eye hospital local to me

May 2018 - I see the consultant and immediately I am told it is not blepharitis it is meibonian gland dysfunction (slightly confusing as I am now aware blephairits is the umbrella term for inflammation).

The consultant also informs me that I have an infestation of demodex that are causing inflammation and my glands are really clogged up and only procuding thick toothpaste like oil. Consultant went on to mention that this is what is causing the burning, crustiness, light sensitivity etc. He was surprised that I told him I have none of those symptoms and aside from aesthetics, my eye were comfortable.

The consultant then manually expressed my glands and instructed me to use g.fml eyedrops for inflammation and warm compress several times a day.

I was compliant with this treatment and I returned to him several times for manual expression between May-July before being discharged as he said the demodex had cleared up and my glands were open. By then my eyes felt comfortable and I feel like the redness has definitely subsided.

He did suggest I try cliradex as TTO kills the demodex, I purchased them and used them for a week or two but they seemed to irritate my eyes.

May 2018 - April 2019 - My eyes remain red around the margins but I do not note any real discomfort. I get occasional dry eye from looking at screens for too long and I develop a burning sensation in shops with fluorescent lights. I notice that the cold weather and wind appears to make my eyelids worse.

April 2019 - My eyes get worse and I try the gel mask but my eyes end up feeling dry and burning the following day, I do not seem to be getting any real oil out of them.

June 2019 - I go back to see consultant expecting for him to tell me demodex has returned and/or my glands were clogged up. He informs me the oil coming out is fine and then tells me that the academic talk amongst ophthalmologists have moved on from demodex and they are no longer a 'hot topic'. I am told I do not need to be seen again despite now presenting with the symptoms he originally suspected I would. I have now started to wonder if it is occular roscea (my dad had lots of spider veins on his veins years ago that were lasered off but never clarified it it was roscea - furthemore my brother and father both present with less prominent but visible spider veins on eyelids. We are pale caucasians) Consultant said potentially but eyelid veins and redness were in normal limits and would not diagnose.

July 2019 - Exasperated, with my eyelid veins becoming more prominent and my eyes looking more inflamed. I book an appointment with a private consultation at Moorfields. She diagnoses with me MGD and anterior blepharitis. She says that my tear break up time is normal but does not seemingly check my glands or express them. She also notes allergic conjunctivitis, I presume this is my hayfever. She says she has had patients with similar profile that have seen good improvement. I am perscribed with an eyedrop for the inflammation, opatamol for the allergy and lymecycline. She said she would like me to try eyelid hygiene and warm compress but recognised my eyelid area was very delicate and might irritate the area so I did not have to. I was very optimistic as I had been hoping to try an antibiotic. After beginning my treatment I found several eyelid veins become more irritated and raised (they still are to this day) I took lymecycline for 5 weeks and saw no real improvement in the inflammation of my eyelids. I did however around this time suffer less with the burning dryness - I did suspect that it was perhaps that my glands were open and the summer heat was helping. I didn't see the improvement I'd hoped and we agreed to discontinue treatment after 6 weeks. Next appointment I asked to a sample eyelash culture and it came back with no staph or demodex infestation. (worryingly she knew little , if anything, about demodex when I informed her of my previous encounter) After another following up appointment she had run out of ideas and gave me the contact details of a colleague who specialised in ocular roscea (which I still suspected) and demodex.

July 2019 - January 2020 – No real improvement and I take on more work at work. My eyes feel worse than they have ever before. I have to work with natural light in office and no lights on because of the light sensitivity. My eyes burn and eyelid veins flush when outside if it is cold or windy or too sunny. I try ocusoft for several weeks but no real improvement. I also try warm compresses but they make eyes redder and I do not get much oil. Winter is very bad and worst I have had it, people comment on the redness of my eyes.

I book an appointment with a local Moorfields branch at the GP in December for the end of January

January 2020 – I go back to original consultant and he tells me my eyes have once again clogged up but not as bad as first time. He does manual expression. He says it could be staph blepharitis and it could also be an immune system response. He suggests when I go to my other appointment the following week ask for ikervis as he knows several patients who had really good progress with it within weeks. This consultant has now said warm compresses if I can but no need for eyelid wipes as irritates my skin.

January 2020 – I go to the other appointment at Moorfields branch and get told I have tear break up time of 2 seconds, my glands are really inflamed and I have anterior blepharitis. She informs me to use TTO eyelid scrubs, warm compresses but also gives me ikervis eyes drops and as well as anti-inflammatory eyedrops. I am compliant with ikervis and do try eye mask but do not seem to get much joy. I continue ikervis for 5-6 weeks but with no improvement and making eyelids more red. the corona virus strikes and my follow up appointment is moved from March to September so I do not finish last 2 weeks of ikervis and do not get repeat subscription.

January to now – I try bruder mask but not getting much oil. I decide to try be fully compliant with eyelid wipes (blephaclean) for 2 weeks twice daily but notice no real improvement.

I have been taking liquid fish oil 1300mg every day since Janaruy - today, it does not seem to be doing anything but I will continue.

I have ordered optimal manuka honey cream as I heard good things about manuka honey but this feels a bit like something else that will inevitably fail.

I am at a total loss, I feel like I don’t even properly know my diagnosis. I haven’t even been told if I am aqueous deficient or evaporative or both. I suspect latter due to the MGD. I also feel my eyes were best after my first, initial treatment but I don’t know if that is because my dry eye disease was in its infancy as opposed to the generic anti-inflammatory eyedrops and warm compress being effective. The veins in my eyelids appear to be increasing over the last few years.

A new development is my eyes seem dry in the morning when I wake up but become lubricated throughout the day. I use Systane balance now as I read it is good for MGD ( I was using hycrosan before) My eyes do not seem particularly dried unless I am exposed to an aggravating factor or sat on a screen for long hours.

I regret mostly not finishing the lymecycline but again this tackles the effect not the cause in terms of anti-inflammatory.

Here is a picture of my eyelids a month ago, this is a fairly good picture as they are normally more red:

https://imgur.com/a/t9EtmWQ

I have some questions and I’d appreciate it greatly if anyone could take the time out to give me an answer on any.

1 My inner eyelids are red, does this mean that the glands are inflamed. The inner eyelid as far as I can tell is meant to be a bright pink?

2 I also can see all of my meibomian glands on both inner lower eyelids. What does this mean. Are they clogged because I can see the oil or what? I am tempted to use warm compresses daily to see if this oil disappears.

3 If my glands are clogged, I obviously have no access to manual expression at the moment. Would the warm compress alone be enough to force the orifices open and allow the oil to flow, I presume this would take a while?

4 I have just started manuka forte eye gel, anyone had success with manuka honey - only see the same few names advocating it

5 I do not appear to have any crusting or scuf. It is mainly the burning from light sensitivty, eyelid inflammation inside. The main things aside from that is the redness of my eyelids – any ideas?

I weirdly find my eyes are better during and after a night of drinking - like the symptoms subside somewhat?

I look forward to hearing from someone – hopefully!

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