My dry eye story

This article was written in June 2020 but updated yearly at the bottom of the text.

Prologue

As a dry eye sufferer on the more extreme end of the spectrum, I spend a bit of time researching my condition and in-so-doing, I have become aware of a few blogs called variations on “my dry eye story”, written by fellow severe dry eye patients.

These are usually helpful overviews of what it has been like to live with the condition at this sort of level and a source of helpful hints and tips, as well as general reassurance, for other people living with this complex and often misunderstood problem.

I thought it would be helpful, mostly for other people who have severe dry eye syndrome and its related problems, but also other people with chronic pain disorders or invisible illnesses, if I put my own story “out there”.

Spoiler alert: the article chronicles the path through dry eye (from 2010), to ocular neuropathic pain (diagnosed 2019), to binocular vision dysfunction (2023) as the various sources of eye discomfort. This is worth mentioning upfront as these two rarer conditions are often mis-diagnosed, or never diagnosed. The latter was not diagnosed at the time this article was first drafted (2020), there was only the idea that there might be a focusing issue going on but no idea what it may be.

What follows here is a partial window into how I have experienced this condition, the sort of impact this has had on my life to date, the interventions I have attempted and specific events related to the condition.

None of this should be seen as anything approaching medical advice.

Over in the States, Jennifer Aniston has been fronting a campaign (Eyelove) urging anyone with really difficult dry eye to see an eye doctor. I could not agree more with this. It is the only personal advice I will provide in this article — absolutely go and see a doctor, (I would add: rather than a high street optician) if you are experiencing unusual amounts of discomfort.

On reflection, some of this story can look a lot of complaining or even point-scoring, especially when it comes to past treatments, but that is not the objective here. I am content with the quality of care I receive today and I am indebted to the NHS for enrolling me onto the autologous serum programme during the COVID-19 pandemic. I see an extremely good doctor privately in London, who is responsible for the bulk of my care, and all the clinicians I have seen I have no doubt wanted the best outcome.

Where this blog does stray into criticism of past diagnoses or interventions, this is intended more as useful background on how I have got to where I am with my condition and with my care today. I am sure there will be fellow sufferers who will read this and relate to the experience of being treated like a nuisance or a hypochondriac, only to discover they had a serious problem all along.

I hope you find this blog helpful.

My condition today

Sometimes I am asked if I have ever tried using eye drops to resolve my problem. The answer is I have, including but not limited to: HycoSan Plus, HycoSan Dual, HyloTear, Lumercare Carbomer, Fluorometholone, Erythromycin, Carmellose Sodium, Fexofenadine, Olapatodine, Thealoz Duo, Vita-Pos, Systane Ultra, Lacrilube, Dropodex, Tacrolimus, Ketofall, Catacrom, Dexafree, Optive, and Chloramphenicol.

I should say at this point that my condition today is more than just a lack of tear film. I have (in theory, you would need to do a confocal to check), an abnormality with the cornea of my right eye which makes it very sensitive. This is probably frayed nerve endings but we can’t be sure. The effects can be surmised as an ocular pain disorder which probably now has a neuropathic element as well.

This is probably the single most important factor relating to the extent of the pain I experience and is a very rare abnormality to have. There are more dry eye patients who have some level of this issue but are unaware and this is a worry for clinicians who do deal with people who have the problem to the extent I do. A lack of awareness both from patients and clinicians is resulting in inadequate care, an issue I will develop later.

The first doctor to suggest I had ocular pain syndrome, and write up a formal diagnosis, did so in 2019, fully eight years after my condition had surfaced as a major issue in my life.

On top of that, there is an allergy component. My eyes appear to react with limonene and/or linalool (the fragrance component in many soaps and detergents) and they struggle enormously with the pollen season and other irritants. This has meant that much of my time both indoors and out has turned into an exercise in trying to second-guess when and where I might experience the painful effects of spending in time surrounded by invisible airborne irritants. I am an outdoorsy person but my spring and summers are now hugely restricted and I now make a point of escaping to the coast.

It goes without saying that this has hit my quality of life quite hard but, as will I detail later, it has had some unexpected advantages.

Then there is the dry eye syndrome itself. This is the physiological condition which has led to the issues detailed above. Your tear film’s breakup time should be around 10 seconds. That is the time it takes for most people’s eyes to start drying out. My tear breakup time, on the last occasion it was measured properly, was around three seconds. This is a result of meibomian gland dysfunction, or MGD. It means the part of the eyelid that produces the lipid layer of my tear film is not working properly. My eyes therefore dry out sooner than most, resulting in both dryness and an inflammatory cycle involving the eyelid, which then rubs on the cornea.

The combination of the above leads to what is broadly described as ocular pain syndrome, the result of years of pain and discomfort which can hyper-sensitise the eyes.

Today I have two punctum plugs in my right eye (the problem eye) and one in the left. I use Tacrolimus overnight as a high level lubricant and anti-inflammatory agent. During the day I use the NHS autologous serum drops (plasma from blood donors) and HycoSan Dual. Dual contains ectoin 2 per cent, which reduces the allergy symptoms. I also take Ketofall eye drops for the allergy component, which acts as an antihistamine and mast cell stabiliser.

The room I work in has a HEPA filter to take out irritants, as does my bedroom and kitchen. When I was going into work, I was working out of a booth and using a humidifier. Interestingly — I was not the only person using a booth due to severe dry eye. I own a pair of 7Eye Nereus — the moisture chamber glasses for keeping the humidity around my eyes raised.

I take omega-7 and omega-3 tablets as well as Loratadine and Pregabalin (the pain killer) on prescription. My structured screen work is now just 3 hours per day and I take screen breaks every 30 minutes for 10 minutes. The need to drastically reduce screen time has been one of the biggest impacts of this condition as this has hit my income severely at a time when my private healthcare spend has been considerabel.

I stay inside when the pollen is high and avoid areas with strong wind as my cornea appears to be sensitive to it. Every day I sit under the Blephasteam device twice for 10-minutes. This heats the meibomian glands to make the tears more viscous. I then have to massage my eye lids in order to help the oils get released. I clean my eyes every day with Blephasol, using both cotton wool buds and cotton wool pads, usually once in the morning and again at night.

One of the complexities encountered by dry eye patients is the way in which certain interventions made to lessen certain symptoms can actually worsen other symptoms. I have no doubt that having two punctum plugs has helped to stabilise my tear film but it is also making the pollen season particularly hard as less tear is getting “flushed out”. Warm compresses help stimulate meibomian glands but probably aren’t so great for the ongoing inflammatory response in my upper eyelids.

In the last year I have also started an anti-inflammatory diet. With only a few rare exceptions, I avoid dairy, gluten and refined sugars.

Each year has brought a new level of difficulty, and as we shall see, it did not happen overnight…

Beginnings in the desert

“And what do you do for a living?” the doctor asked whilst studying the 10-page eye history log and medication spreadsheet I had presented to him.

“I am a civil servant,” I replied, proudly.

“That makes sense,” he said.

This juncture in my dry eye journey (late 2019) was just at the point when I was finally getting both a proper diagnosis and ongoing assistance from the NHS for the first time. I no longer bother with keeping the huge spreadsheet I presented this doctor with but it is a helpful reminder of some of the experiences that have taken place in the last few years.

Anyone who has this condition will not be surprised at all by the circumstances around the first time I experienced truly very high levels of pain from it. I was driving in the Gobi Desert back in 2010 as part of the Mongol Rally, unaware I had dry eyes, with all the jeep’s vents open. I was astonished by the pain and was genuinely theorising (being in an unfamiliar country) that some sort of monstrous insect might have found its way into my eye.

It was a kind of deep migrainous feeling, which I now only get very rarely and I tend to assume (without any specific advice available) that this is the cornea getting particularly worked up.

So clearly, the desert was not a suitable place for my eyes. The pain returned again later, waking me up in the night and bothering me during the plane journey home. It would not return again for another 18 months.

That having been said the very first time I ever encountered this form of discomfort was when I was aged about 10. I had gone to Bristol’s Colston Hall for a VE day concert with school and was required to be under the stage lights — pretty obvious why that would have been an issue.

This same pain re-emerged in the winter of 2011, presumably because the heating had come on and I was unaware of the condition I had, taking no eye drops at all. It was a truly awful and unsettling experience. I began a course of Lacrilube, taken twice a day, on the advice of a doctor who felt I probably had a recurrent corneal abrasion.

Bouncing between optoms and A&E

In the years since then, I experienced a gradual ramping up of negative symptoms. Reading, screen time and time in dry environments became really tough. It is like having a really unhelpful sixth sense. If I walk into a dry room, I can tell it is dry instantly because my eyes dry out.

In 2014, I met a doctor via GP referral who told the students that were sitting in on the appointment that my pain was probably the epithelial layer getting disrupted and would likely go back to normal. He behaved as though my presence in the hospital was very questionable and as I left the room he said “I do not want to see you coming back here with dry eye”.

The letter to my GP reads “this gentleman has no significant eye problems to worry about”.

Many severe dry eye patients experience this sort of treatment but I am pleased to say that as clinicians become more aware of the many ways the condition can present itself we are hopefully moving to a point where less of us are treated as over-sensitive or as a burden.

This was one person’s honest and reasoned opinion but this experience, as well as a handful of other appointments, left me feeling as though I really was making a fuss about nothing and I should carry on my life, and particularly my work as normal.

Having moved to London I began an unconstructive pattern of going between high street optoms and the emergency department of a major eye hospital. My thinking was that if I was having a really bad episode, I should at least get the eye (it is always my right eye) checked out in case there was a more critical explanation for the pain than just dry eye. The same process would repeat again and again — they could see nothing that could explain the level of pain I said I was experiencing.

The next few years were characterised with particularly bad episodes coming and going. In between these episodes, I found I needed more time away from screens and became aware of a reduced keenness for social outings, as my eyes were often very tired by the evening. Inflammation in my upper right eyelid was first identified in 2015 during an A&E visit, but it had probably been going on a lot longer. It was not proactively managed for another four years.

My approach to seeking care was pretty flawed. I did not seek private advice until 2019, trusting that my regular optom check ups plus a few visits to the emergency wing of an NHS hospital would deal with the worst moments. These “worst moments” resulted in my first encounters with topical steroid drops but I was always discharged, rather than referred for further care.

It is easy to say in hindsight that I should have sought private care at this stage but I simply hadn’t considered it an option and in any case, the doctors I had met had seen nothing — so what would be the point?

A life changing condition

By the summer of 2017, I had needed to cancel shifts on newsdesks (and a very exciting press trip to a whisky distillery) due to dry eye but had never actually gone off sick with it. That was something I was very keen to avoid as it would signal to me that the condition had become truly obstructive. I did not want the condition to result in time off work but in the following year I would have a whole month off work in total, whilst working as part of a press team.

The reasons for this have subsequently become quite clear. The air in the office was very, very dry and I was working very fast and sometimes long hours. The advice I got from optoms at the time was that despite my pain, all was well so there was no real need to do anything differently.

It was 2018/2019 when a really serious deterioration began. I seemed to be able to feel that all was not well with the underside of my right eye lid. I raised this with an optom who said that eyelids are skin and therefore not in the jurisdiction of their profession so I should see a dermatologist. This was a constructive meeting but entirely missed the issue of dry eye’s inflammatory cycle, a key component of which is often an inflamed eyelid.

Later that year, I very nearly lost my job altogether and had to cut back my hours at work to 3 days/week. As a result, I was unable to fund renting a flat in London and returned to Bristol to live with my parents. The exact point at which things took a more severe turn is not completely clear but there was definitely a time when I could spend time in windy conditions without wraparounds and then, within a few weeks, I could not.

It is well documented that dry eye syndrome can be a markedly expensive condition for people to have, even at a more moderate level. In 2019, I was spending £550 per month on average, just on private health care, blowing a huge whole in my savings. That may seem extraordinary until you consider that cyclosporin (the anti-inflammatory drop) costs £100/month if you are putting in one per day. By the summer of 2019, I was putting in four per day and by the time I got an NHS prescription, I was moved onto a different anti-inflammatory. Intense pulse light treatment came to £750, moisture chamber glasses around £500, wrap-arounds another £500. HEPA filters, supplements, humidifiers, appointments, all of them can add up.

Again, my experience is not completely unusual.

I took the view at the time that ultimately if these interventions were helping to keep me in work, they were, in a sense, paying their way. I was also willing to throw everything I could think of at this condition, within reason, and it was only through taking these measures that I was able to get the full diagnosis I have today.

This is also the time when I first began to consider myself to have both a disability and an invisible illness.

As the condition, in my case, does not show any outward symptoms, unless you know I have the problem, you would have no idea. If anything, thanks to the action of punctum plugs, my eyes can actually look very watery.

Combine that with the fact that reducing work hours does, inevitably, frees up more time for leisure activities and you can find that some people interpret this the wrong way. I have had people I know very well infer, repeatedly, that my situation is “a joke” and that this is an exercise in getting away with doing less in the way of structured work.

What is the solution to this? There is certainly the option of complaining a lot more but that probably wouldn’t be helpful to anyone.

Some contradictory advice continued into this period. In 2018 I had a doctor tell me to stop using the carbomer drops recommended to me by another hospital because they have preservatives and may be making things worse.

In the same year, encountering very serious discomfort, I was reassured by an optom that although I was in pain, it was ultimately not sight threatening or otherwise harmful and I should continue as normal. Six months later I was told that the condition is degenerative and that I should take steps to seriously reduce my screen time in order to preserve my eye health and prevent further inflammation. This was also when I learnt that I had been having inflammatory episodes the whole time and that each time I have one, it makes the chance of having another one more likely and harder to come out of.

It was after this discussion that I decided I would have to go part-time. I do not know why that had not occurred to me before but I knew at the time I met my specialist that this was a turning point conversation and I would have to work on reinventing the way I work, probably quite radically. I will always remember it as one of those profound conversations — the starting point of having to do things very differently.

Not so mad after all

Later in 2019, after I had gone part-time, taken a course of steroids, started using moisture chamber glasses but was still in pain, I had one optom say that he had done all he could and that my remaining discomfort was probably (in the politest way possible) in my head.

Astonishingly, he also said “I have dry eye and it doesn’t make me depressed” and suggested I needed to learn to live with it. For clarity: this condition is stressful but to date, it has not made me seriously depressed as such.

It does not seem to have occurred to him that I was probably experiencing more pain than he was or that the demands on your eye when you are working as an optom in a private room is different to an office job with long hours and a workplace that had pretty severe air conditioning. Instead he questioned whether I really liked my job and if I was using my eye pain as a way out of it. He referred me to a private CBT therapist, who I did go and see. In hindsight, I find these comments completely incredible but at the time I was really willing to consider any advice going.

I had always avoiding doing my own “Googling” of the condition because I felt I knew what I needed to know, I trusted the advice I was given and I did not want to come across any scare stories. By this stage however I had started to look at scientific papers and journals and began to conclude that I probably had something else going on other than dry eyes. The first person to confirm that this may be the case was a really helpful doctor and academic based at an American university. She suggested that there may be another issue, a pain malfunction, possibly the result of having this condition for so long, or possibly a pre-existing issue with the cornea of my right eye.

Just three months after the optom had told me I was using my eyes as an excuse to reduce my hours, I sat in front of an eye doctor who told me that people like me have been treated like this for years but that the medical community was finally starting to understand that there are extreme cases (probably less than one per cent of dry eye patients) who probably have issues with their cornea or other pain issues that lead to the high levels of pain. I was finally diagnosed with ocular pain disorder at this point. This was, oddly, a huge relief.

These past experiences underline a phenomenon that a lot of dry eye patients describe. They visit one clinician, who suggests their own suite of options, often dismissing the last appointment as having been futile, and when their solutions don’t work, you can be treated as though you are being a bit difficult. There seems to be an unwillingness to say “I don’t know” and suggest a second opinion and I am sure that is likely to be the case in much of the medical world.

More recently, encountering pain in the area of my face around my eye, I found two osteopaths that attributed it directly to the long term pain issues in my right eye and an optometrist who suggested there was no connection and asked me to “show him the science”.

I could go on and on with these examples but I think the point has been made. Ultimately, it is a confusing condition and the advice around it has changed considerably in the last ten years as knowledge has grown and treatments have changed.

The overwhelming lesson from my own experience is very clear and it is the same advice at the top of this blog post: if you are in persistent pain — go and see a doctor, not an optom. The psychosomatic effects of living with chronic pain, and the more recent research into the neuropathic elements of dry eye, do suggest that it is indeed possible for some of your pain to be — if you excuse the expression — “in your head” — and it may well be. I would recommend that you go and see a highly specialised doctor, particularly one with a corneal or dry eye speciality, before you refer yourself to therapy.

Upsides

I said at the top of this post that it may read like one big moan, and I apologise for that. I do want to briefly mention a few unexpected upsides of having this problem.

Reduced screen time is frustrating but in many ways a blessing. I set an absolute ceiling of six hours per day in front of the screen — three for my employer, and three for my own activities, when my eyes permit it. This means there can be no trawling through Twitter or Facebook or getting involved in huge message threads. It has made my work is more focused on delivering on objectives.

“Own activities” is a reference to the writing I have resumed in this period as well as a few other projects, which it has been great to start working on. Returning to the West Country has been extremely rewarding, not least because my return here pre-dates the CV-19 lockdown.

I have started using Audible, rather than reading books as reading also puts my eye(s) under strain. This has meant I actually “read” way more books than I ever would normally.

I have come to consider the condition as an accepted part of my life, rather than an aberration or something to battle with. It is “part of the story” rather than just a drain on everything else. I operate what you may call an “eyes first” policy — health before everything else — and my general health is probably better now than it has been at any time previously.

Lessons learnt

Writing this blog has helped me to reflect on my experiences but also think of some suggestions for patients and clinicians.

For patients: do not accept a diagnosis that your pain is in your head or that you are over-reacting. Go and see an eye doctor, not an optom. I would also suggest not mincing your words — there is no need to be British about this — if you are in pain — say so. “Do not let anyone tell you this cannot be a big problem” a doctor recently said to me.

For clinicians: there needs to be a greater understanding of this condition both in high street opticians and in hospitals. It needs to be more acceptable for the medical profession to say “I don’t know” or suggest a second opinion. This is particularly important as dry eye can be a degenerative condition with serious implications for someone’s general wellbeing. It is very unlikely that a patient will present with problems like mine — I am, as one doctor has put it — “a sub set of a sub set” of the condition. But it would ultimately be beneficial to everyone if really bad sufferers are caught early rather than repeatedly turned away only to need more serious treatment later on.

A good place to start is this article from the American Academy of Ophalmology co-written by one of my current clinicians: Pain Without Stain (a reference to the staining you might see on a damaged cornea) provides a helpful overview on what to do if the patient has consistent pain despite the usual treatments being used. It begins as follows:

“A patient walks into your office complaining of chronic dry eye symptoms but shows no staining or other signs of tear deficien­cy or hyperevaporation. Unsure of a diagnosis, you initiate treatment with topical therapies to optimize the ocular surface. The patient finds no relief. Now what?”

The following few paragraphs I am lifting in full as they are really important.

“In the absence of staining and responsiveness to treat­ments, busy doctors tend to say the eyes are fine and may dismiss complaints as psychosomatic or hysterical,” cautioned Deborah S. Jacobs, MD, at the Massa­chusetts Eye and Ear in Boston.

“Our practices are set up to deal with signs, not symptoms, and it is difficult to diagnose neuropathic pain because it is not concrete,” she acknowledged. That said, Dr. Jacobs pointed out that “you’re doing the patient a favor by spotting a potential nerve problem early — the earlier, the better, before the central pain pathways become sensitized.”

As the cornea is the most exposed mucosal tissue in the body and has the highest density of nociceptors of any tissue in the body, it is particularly vul­nerable to dysregulation. “Our highest priority is educating ophthalmologists that dry eye can represent a ‘chronic overlapping pain condition’ that is best managed with a multidisciplinary approach,” Dr. Galor said.

For employers: I might also add that offices should take into account how bad air conditioning can be both for dry eye and a range of other conditions. My last London office maintained a relative humidity of around 30–40 per cent. That is despite having thousands of gallons of water pumped into the system every year. Many people in the office theorised that this was worsening all sorts of skin, respiratory and even other eye conditions.

Perhaps my only other recommendation would be (and I appreciate this involves screen time) actually doing your own post like this one. For me this has been a really interesting re-discovery of where I have been with the condition, which will no doubt inform where I am going.

I know from other blogs about the huge toll on mental health that can result from living with severe dry eye. For now, I have been lucky in being able to avoid the worst of this. If you feel you are able to, and your condition permits you to, I would urge you to put out your own story, you may find that it acts as a treatment in its own right.

Update: December 2021

It has been interesting to hear from other sufferers as a result of this blog post. This little update is mostly for them. For the most part the condition has stabilised since I wrote this article back in June 2020. I feel very strong effects from eye strain/tired eyes, and can’t use my phone in particular without encountering considerable discomfort. This, in addition to the pollen season, is the main source of discomfort but sadly is difficult to avoid.

Countering eye strain has involved a mix of screen breaks (the 20:20:20 rule), whole no screen days, working flexibly in my afternoons, clearing out the “debris” that collects in my eyes as well as excess tear. This seems to be the one element of my problem which is actually getting worse. My right eye lid now almost permanently quivers as a result.

Since writing this 18 months ago I have continued to get the conflicting medical advice that dominates this piece. At the start of the year, an NHS doctor told me my eyes are fine and that if just practised meditation and mindfulness I might start to feel better. Just a few weeks later another doctor told me my eyes were in quite a lot of trouble and advised me to blink for 10 seconds every 50 seconds while on a computer — this proved impractical. The advice to meditate does make some sense — eye strain is exacerbated by stress, but, to quote a private doctor I saw just 9 months later “meditation would help me too but it isn’t going to fix your eyes”.

On treatments: I have however had some very helpful interventions from the two main clinicians I now speak to. This has included using a migraine treatment called Cefaly Dual. This is an electrode which attaches to your forehead and can be used for 10 minutes a day as way of reducing the high level of sensitisation in my right eye.

I’ve also undertaken a course of antibiotics (azithromycin 500mg), I now use blue light blocking lenses (FL-41) and undertook a periocular injection (supratarsal TA) of slow release steroids to help with the inflammation in both eyes. The plasma drops, when available, are still being used and I have an appointment to treat the allergic component with de-sensitisation.

I now only have one punctum plug in my right eye (the one in the top eyelid fell out). It actually began falling out just at the point I had driven 45 minutes from home, causing some considerable discomfort by rubbing on my eye whilst half-way out. I had to drive for an hour back to Bristol to get seen by the Eye Hospital, who, to their immense credit, let me in just as they were closing to have the plug removed.

On spending: I’ve managed to establish that the cost of my treatments since 2014 have just passed £23,000. As anyone else with this condition will verify, it can be extremely expensive to live with and for the time being at least, I am reluctant to pull back on this spend if sensible options proposed by the best people in the field are available and worth exploring.

Update: May 2023

A new year has brought with it new options for treatment and, amazingly, some relief from this condition.

Good news! The most positive development has been a huge reduction in the extent to which I feel dryness and pollen irritation in my right eye. This has been achieved through Intense Pulsed Light Treatment (boosting the tear film through targetting MGD) and removing the punctum plug from that eye.

I have also tried periorbital botulinum toxin — a botox injection that largely mimics migraine protocols, which may also have assisted with the progress here. I have now had a confocal micropsy which showed no particular abnormalities.

Not so good news. Eye strain and associated symptoms continue unabated. Facial sensitivity is getting ever more extreme and making it impossible to lie flat on a pillow, incredibly.

The OG issue: There has been some discussion around the possible impact of a forceps birth as the source of all the problems now listed below in a symptoms chart as well as possible binocular vision dysfunction.

SYMPTOM CHART AT MAY 2023

SYMPTOM: Sensitivity to reading and screens (largely right eye only)

Diagnosis: Ocular neuropathic pain with eye strain. Possible binocular vision dysfunction.

Description: This is a high-level sensitivity — even a brief glance at my phone can bring a lot of discomfort and I now operate it entirely using audio assisted technology. A day in front of a screen has not been achievable for some time. Reading a book is much harder than time in front of screen for work. A dull ache is accompanied by flashes of pain. Feels like very worn-out eye muscles continuously, giving up after not much reading or strain at all. Eyelids start twitching as well in both eyes. Can bring on (what feels like) an a full ocular migraine on rare occasions where it is too painful to work. Generally, anything that can bring about strain, will. Straining to look at something, even for a short moment, is also a problem.

Treatments: Cefaly, Carl Zeiss digital lenses. Eye drops (HycoSan Dual and autologous serum), meditation, 20:20:20 rule, blue light reduction.

Symptom: Sensitivity to airborne irritants and pollen in particular (right eye only)

Diagnosis: Ocular neuropathic pain and dry eye.

Description: This is a very high-level sensitivity which has kept me indoors for large stretches of the year. Generally a low level of discomfort but can progress of migraine-like symptoms — a bit like eye strain. A lot of relief from removal of punctum plugs.

Treatment: Wraparound glasses (7Eye), eye drops as above, HEPA filters, loratadine.

Symptom: Facial sensitivity/pain

Diagnosis: Ocular neuropathic pain with possible links to facial trauma due to forceps birth (which may also connect with rest of issues)

Description: Just touching parts of my face can be extremely sensitive. Usually this sensitivity is connected with the right eye. Have to sleep on left hand side to get relief but that too can be uncomfortable. This sensitivity is continuous and worst at night or in a seated position. Started five years ago and getting worse.

Treatment: Cefaly, ocular pain (botox) protocol. Past osteopathic interventions and recent chiropractic intervention. Exploring cranial or other muscle-skeletal connections to eye discomfort.

Symptom: White and black dots, increased floaters, visual haze

Diagnosis: Three diagnoses. (i) Posterior Vitreous Disintegration, (ii) ocular migraine, (iii) functional neurological disorder.

Description: This has been going on for a year with increasing severity over time. The sky is now filled with white dots and streaks, darker environments with black dots. Happens with eyes open or closed but more prominent we General haze in most of vision. Like looking through 35mm film. More prone to the lights that appear when getting up quickly and I “see” my heartbeat in vision.

Treatment: None. Believed to be innocuous and not connected to other eye issues. May have facial trauma connection. Emerged at the same time as numbness, tingling, muscle tightness, neck issues around April 2022. Also followed on from CV-19 and a period of some stress.

Symptom: Dryness

Diagnosis: Meibomian gland dysfunction

Description: Original noticeable condition, going back 13 years, but of limited concern to me now. Left eye barely noticeable but right eye very sensitive. Very dry environments (offices, museums, fireplaces, radiators) are a painful struggle but these are now avoided.

Treatment: Intense pulsed light treatment, Blephasteam (lots of historic treatment listed above.

Symptom: Sensitivity to wind

Diagnosis: Ocular neuropathic pain

Description: Not of huge concern — wraparound glasses almost entirely remove this issue.

Treatment: Wraparound glasses from 7Eye.

Symptom: Sensitivity to allergens.

Diagnosis: Allergic reaction to limonene, linalool, pet dander, tree pollen.

Description: Not of huge concern unless in contact with these allergens.

Update February 2024: Something else after all.

After 14 years of eye pain, 6 of which have been disabling, and £30k spent on various treatments, it has finally turned out that I have binocular vision dysfunction (BVD) as well as severe dry eye.

This is a rare condition that either originates from facial misalignment, or neurological issues, or both. Mine is quite a high reading: a diplopia of 2.8 in the vertical. I have a different reading for near/distance vision. For me personally, it is assumed that this has been playing into the dry eye issue — the need to constantly re-focus causing both major muscle stress and a reduced blink rate. I probably also fall into a category of patient, best described by Paul Karpecki.

From Optometry Times:

Dr. Karpecki described that binocular vision problems can also mask dry eye symptoms by affecting the tissues in the eye. Convergence insufficiency can lead to overstimulation of the trigeminal nerve, causing headaches and other factors that may affect the cornea [and] create dry eye symptoms.

He also has some great advise in the article for diagnosing (and not missing) dry eye.

It has almost certainly gone unchecked for a very long time, but I am immensely grateful to the clinicians that have led me to this place over the last few years.

Those clinicians were: Samer Hamada (Eye Clinic London), who first suggested a focus issue back in 2020 and showed interest and determination to fix what is plainly a complicated problem. Samer and his excellent team have also been hugely helpful in treating the (still extant) dry eye issue, in particular with intense pulsed light (IPL) and testing for underlying inflammatory conditions. Anat Galor (University of Miami) was instrumental in fleshing out the many different options for treating ocular neuropathic pain (Cefaly, gabapentin, botox treatment, FL-41 lenses, and much more).

Miguel Mudarra (freelance but then at P&A Eyecare, Edinburgh), first suggested BVD at the start of last year, Dr Debbie Feinberg of Vision Specialists of Michigan, assessed me for free over the phone and sent me to Paul Adler, of St Albans, who has diagnosed and is treating this. Incredibly, given all the bizarre and expensive interventions over the years, BVD is treated with: glasses, and vision therapy.

It would be remiss of me not to also mention the incredible patience and charity shown to me by my partner and her family at this crucial stage in my care. Rebecca Petris, Co-Founder/Co-Executive Director at The Dry Eye Foundation also gave up her time to speak to me early last year and made some helpful suggestions.

The origin of the BVD is unknown, though an MRI result from the tail-end of last year did suggest that something unusual may be taking place/has taken place which could account for it. The primary reason for continued involvement of neurology (where my original referral was Q1 2021 but investigations started in Q3 2023) is to see if ongoing inflammation in the brain is the cause of these issues.

Visual snow, which has continued for me, though thankfully stabilised, is of course, neurological in origin. We await the results of a lumbar puncture to see if there is more to be concerned with here. Otherwise, a diagnosis of generalised hypermobility, borderline Ehlers-Down Syndrome could also be playing into the BVD but at this stage the focus is on working through a series of lenses; and the origin of this problem may never be found.

To have dry eye, visual snow and BVD all at once is curious and though I do not plan to spend too much more time (or money) investigating the background to it all; it is worth floating the idea that it could have a dietary origin, or exist as a quirk (or a bigger issue) of the central nervous system, or it could be the result of the stress response [see Gabor Mate’s When the Body Says No]. One study does seem to show that many people presenting with visual snow also have BVD. Persistent breath-holding has also been suggested as a possible cause of this. A cleanse or anti-inflammatory diet has been suggested and will be undertaken — and yes, ironically, given my reaction to this suggestion (above), a programme of meditation as well.

Unhelpfully, the symptoms of BVD, often described as being a bit like post-concussion symptoms, can present as a neuro complaint but actually be caused by the eyes, and vice-versa, a neuro-issue could now be masked by BVD.

Whilst I feel hugely grateful for the good fortune that has led me to the BVD diagnosis, I cannot help but wonder “what might have been”, had this condition been caught earlier. Further up this page, I have described my encounter ten years ago at London’s Royal Free Hospital:

In 2014, I met a doctor via GP referral who told the students that were sitting in on the appointment that my pain was probably the epithelial layer getting disrupted and would likely go back to normal. He behaved as though my presence in the hospital was very questionable and as I left the room he said “I do not want to see you coming back here with dry eye”.

The letter to my GP reads “this gentleman has no significant eye problems to worry about”.

It was one of many similar encounters over the last decade or so.

What if, instead, my problem had been investigated further? I was clearly in a lot of trouble and had been for a while, even by 2014. Whilst I do not blame the hospital or the doctor in question (I see this as a systems failure), what if clinicians had a means by which to re-refer someone with a strange set of symptoms to others who may have a different expertise? This would involve not just a systems change but a culture shift as well. A culture that encourages doctors to tell someone like me, who turns up with a (albeit very rare) focusing issue, to go and meditate and not look into the issue any further than my 10-minute check-up is ultimately costing both me and the NHS more in the longer term.

At the very least, there needs to be more awareness of both ocular neuropathic pain and BVD as a problem in the clinical setting.

A final note for my fellow Bristolians: I have found being out of the city, with its propensity towards “pollen bombs” mixed with local air pollution, has given me huge relief from the dry eye symptoms.