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This may be a long read but I would really appreciate if anyone can find the time to do so and reach out.
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 cultured for demodex and staph, the lab results came back as no evidence of either. she had run out of ideas and gave me the contact details of a colleague. who specialised in ocular roscea (as I was still convinced this may be a factor) and demodex (as before I had mentioned it to her she seemed to have little, if any, knowledge of their impact in eye disease).
I left feeling deflated and a little lost.
July 2019 - January 2020 - I take on a bigger job at work and am more tired. My eyes look and feel progressively worse than ever. I have to work with the lights off as they irritated my eyes, and they burn when outside in any type of cold or windy weather. This also massively irritates me eyelids and turns them a sore red that has led to people commenting. My eyes often feel dry in the mornings and my glands seem to take a while to get going. I am feeling depressed about my eyes. I try warm compress but not as hot as before but it just makes my eyes more red and I am not getting much oil. I start to use an ocusoft lid scrub but after a few weeks I can't tell any difference in terms of the symptoms.
I go to the GP and get an appointment for a different, local Moorfield branch some point in December 2019.
January 2020 - I go back to my original consultant and he again confirms that my oil glands are clogged up but not as bad as they were the first time he treated me. He manually expresses them and in our discussion he says it could be staph causing my blepharitis or an immune system response. In this discussion he says he has known several patients use ikervis and feel almost symptomless in weeks. He says to ask for this at my appointment at the Moorfield branch which is the following week. He gives me a different type of lubricating eye drop to use.
January 2020 -
I go to this new appointment and the lady tells me I have a tear break up time of 2 seconds and says my glands are inflammed. She diagnosies me with posterior blepharitis and MGD. She perscribes me an anti-inflammatory eyedrop to use for 2 weeks and ikervis to use for 2 months until the next appointment. She says I should a procedure done of cleaning my eyelid base at her private other clinic. I take her card but feels like a bit of a money grab. She also says I should use TTO wipes and warm compress. I explain problem of the irritating of the skin around but she offers no other suggestion.
I use the ikervis for 6 weeks but there is no difference whatsoever, corona strikes and my appointment is moved from March to September.
Current day - With being at home due to the virus I thought this would be a good time to be more compliant with my treatments. I tried blephaclean for 2 weeks twice a day but again it seemed to irritate my skin and give me no respite from the symptoms. I purchased a bruder mask but seem to be getting no oil and am worried about corneal warping and read more and more reports about the ineffectiveness of conventional warm compresses.
I am at a total loss what to try, I know I have not been always fully compliant with the treatments but it just feels like these treatments are making the redness of my eyelids worse. The redness, burning and light sensitivity were the worst it has ever been this winter and I just feel helpless.
It feels like I only ever seem to get treatment for the effect and not the cause and I am not being properly diagnosed, or diagnosed for a range of different things. I am not particularly clean on what I have got as a condition. I have never even been told if it I am both aqueous deficient and evaporative.
I am still convinced with the appearance of spider veins (which is seen in my brother and father despite them reporting no dry eye) that I have ocular roscea and that is why the warm compresses seem to not help. I definitely also seem to 'flush' in hot weather, or after a shower, or when it is windy or cold.
I am also aware I use a lot of screens which will not help and try to limit them but there has been no increase in my screen usage over the last decade or so this does not feel answer.
I have ordered pataway for my allergies and a manuka honey eye liquid that I will try (seen honey lauded a lot on this forum)
I am somewhat regretful that I did not get to finish the ikervis but it was showing absoulutely no sign of improvement and was making my eye area more red. Similarly with the lymecycline I wish I had been on it longer.
Here is a picture of my eyes currently (normally more red the veins but it varies throughout the day and which exposures there are)
https://imgur.com/a/t9EtmWQ
I also have some questions and would love to hear any ideas
1) My inner eyelids are really red so I presume they are inflamed, I guess I would need antibiotics to tackle this inflammation?
2) I can visibly see all of my meibonian glands, does the fact they are visible mean they are clogged? Or is it normal that everyone can see their meibonian glands. I am tempted to use warm compresses until I don't see them.
3) I want to try lymecycline again and can purchase it online, I didn't finish my last course but I am tempted to recontinue but would not have an opthomologist to assess progress. I am thinking that because it was initially prescribed and i had no adverse side effects that this should be alright.
4) Has anyone had similar symptoms and got any answers? My pain concern is the aesthetics of my eyelids but also the flushing in certain situations and the burning light sensitivity.
5) I am open to being more compliant with any former treatment that people have had success with but I just didn't see any improvement.
It is really taking away my quality of life which is frustrating.
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 cultured for demodex and staph, the lab results came back as no evidence of either. she had run out of ideas and gave me the contact details of a colleague. who specialised in ocular roscea (as I was still convinced this may be a factor) and demodex (as before I had mentioned it to her she seemed to have little, if any, knowledge of their impact in eye disease).
I left feeling deflated and a little lost.
July 2019 - January 2020 - I take on a bigger job at work and am more tired. My eyes look and feel progressively worse than ever. I have to work with the lights off as they irritated my eyes, and they burn when outside in any type of cold or windy weather. This also massively irritates me eyelids and turns them a sore red that has led to people commenting. My eyes often feel dry in the mornings and my glands seem to take a while to get going. I am feeling depressed about my eyes. I try warm compress but not as hot as before but it just makes my eyes more red and I am not getting much oil. I start to use an ocusoft lid scrub but after a few weeks I can't tell any difference in terms of the symptoms.
I go to the GP and get an appointment for a different, local Moorfield branch some point in December 2019.
January 2020 - I go back to my original consultant and he again confirms that my oil glands are clogged up but not as bad as they were the first time he treated me. He manually expresses them and in our discussion he says it could be staph causing my blepharitis or an immune system response. In this discussion he says he has known several patients use ikervis and feel almost symptomless in weeks. He says to ask for this at my appointment at the Moorfield branch which is the following week. He gives me a different type of lubricating eye drop to use.
January 2020 -
I go to this new appointment and the lady tells me I have a tear break up time of 2 seconds and says my glands are inflammed. She diagnosies me with posterior blepharitis and MGD. She perscribes me an anti-inflammatory eyedrop to use for 2 weeks and ikervis to use for 2 months until the next appointment. She says I should a procedure done of cleaning my eyelid base at her private other clinic. I take her card but feels like a bit of a money grab. She also says I should use TTO wipes and warm compress. I explain problem of the irritating of the skin around but she offers no other suggestion.
I use the ikervis for 6 weeks but there is no difference whatsoever, corona strikes and my appointment is moved from March to September.
Current day - With being at home due to the virus I thought this would be a good time to be more compliant with my treatments. I tried blephaclean for 2 weeks twice a day but again it seemed to irritate my skin and give me no respite from the symptoms. I purchased a bruder mask but seem to be getting no oil and am worried about corneal warping and read more and more reports about the ineffectiveness of conventional warm compresses.
I am at a total loss what to try, I know I have not been always fully compliant with the treatments but it just feels like these treatments are making the redness of my eyelids worse. The redness, burning and light sensitivity were the worst it has ever been this winter and I just feel helpless.
It feels like I only ever seem to get treatment for the effect and not the cause and I am not being properly diagnosed, or diagnosed for a range of different things. I am not particularly clean on what I have got as a condition. I have never even been told if it I am both aqueous deficient and evaporative.
I am still convinced with the appearance of spider veins (which is seen in my brother and father despite them reporting no dry eye) that I have ocular roscea and that is why the warm compresses seem to not help. I definitely also seem to 'flush' in hot weather, or after a shower, or when it is windy or cold.
I am also aware I use a lot of screens which will not help and try to limit them but there has been no increase in my screen usage over the last decade or so this does not feel answer.
I have ordered pataway for my allergies and a manuka honey eye liquid that I will try (seen honey lauded a lot on this forum)
I am somewhat regretful that I did not get to finish the ikervis but it was showing absoulutely no sign of improvement and was making my eye area more red. Similarly with the lymecycline I wish I had been on it longer.
Here is a picture of my eyes currently (normally more red the veins but it varies throughout the day and which exposures there are)
https://imgur.com/a/t9EtmWQ
I also have some questions and would love to hear any ideas
1) My inner eyelids are really red so I presume they are inflamed, I guess I would need antibiotics to tackle this inflammation?
2) I can visibly see all of my meibonian glands, does the fact they are visible mean they are clogged? Or is it normal that everyone can see their meibonian glands. I am tempted to use warm compresses until I don't see them.
3) I want to try lymecycline again and can purchase it online, I didn't finish my last course but I am tempted to recontinue but would not have an opthomologist to assess progress. I am thinking that because it was initially prescribed and i had no adverse side effects that this should be alright.
4) Has anyone had similar symptoms and got any answers? My pain concern is the aesthetics of my eyelids but also the flushing in certain situations and the burning light sensitivity.
5) I am open to being more compliant with any former treatment that people have had success with but I just didn't see any improvement.
It is really taking away my quality of life which is frustrating.