I have suffered chronic eye pain for about 15 years and to this day I have no diagnosis. I'm writing this post in case there are other people out there who have had a similar experience and who might want to get in contact. I have been pretty lazy for the last few years and have given up on my hunt for answers, at least for now.
NOTE: I wrote this post back in 2016 I think, the good news for me is that since 2018, the pain has been easing a few percentage points a year, very slowly but steadily. It came on without warning and it is going away now, years later, again without any treatment or diagnosis still. I don’t have an amazing treatment story to share unfortunately. Compared to the bad days between 2006 and 2013, the pain I have now (2021 as I add this note) is nothing. With the right precautions and avoiding my triggers I live a normal life. In any case, for those who are going through bad times right now I leave this blog post to share my experiences with them. I myself have tried to move on from this and get back to a normal life and I hope that others with chronic pain get relief like I did.
So if you or someone you know has had constant chronic eye pain for years, and no neurologist, ophthalmologist, pain specialist or optometrist has been able to help, then read on. I trawled the web for years looking for another me and never found one. I've seen more doctors than I can remember now, even national specialists in eye pain and they never saw anything like me before. But may be there are more people out there with these symptoms.
NOTE: I have a promising lead and even it turns out not to be the cause, it’s the only close match I’ve ever seen. So read on and if you have similar symptoms then at the end of this post is a potential diagnosis that you should take to your neurologist.
I'll break this down into four stages:
A description of the various qualities of the pain. Yes folks, pain is like tea, there are many flavours.
The triggers
My counter measures against the triggers
A timeline, a year by year journey.
This post is going to try to be an objective description of the above. I won't go through all the emotional upheaval of it all except for what I'll say next. If another "me" is out there, I don't want to make it sound like I just got on with life and made a success of things anyway. I've had some really tough times. I've had my ongoing battles with depression, despair and suicidal thoughts. Hopelessness and pity. Basically, life with chronic pain is never easy. During the worst periods of pain life was frankly a bloody nightmare. But fate has been kind to me and for the last five years I have been stable, my symptoms have eased to a more manageable level and moving from a screen reader to 300% screen magnification has got me a career again.
Anyway, let's start describing the pain.
The Pain
It never stops, this is pain without even a second of let up, but the levels and quality vary. It goes up very quickly and it comes down again very slowly, but the various triggers are predictable which means I have a degree of control, though one particular trigger is unavoidable.
The pain has different qualities depending on the severity. When I first got a programming job, I started getting eye strain, it turned out that I just needed glasses, then it cleared up. The lowest level of pain, the base level, is like that eye strain. As the severity goes up the pain spreads into my brain behind my eyes, I feel like I can feel my optical nerves through either a burning sensation or as the pain intensifies, an electrical or buzzing pain. As the severity goes up it spreads like thin fibres down into my chest where it fades out, with occasional electrical shots of pain.
Thankfully, the more dramatic symptoms are rare and have happened only a handful of times - though lasting weeks in each case. Episodes always end, but the easing of pain is very slow. The rest of the time, pain has varied between the base level and the burning optical nerve level.
Triggers
Pain on focusing the eyes
This one is kind of unavoidable. Any focusing at all raises the level. Reading a book for example is out of the question - reading for 10 minutes will give me pain for a couple of days. Reading for an hour might mean I need to be off work for a couple of weeks. So I have to keep any focusing on near objects as brief as possible.
There are things that I can just about do and may be just suffer a few hours or a day of extra pain: filling in forms, reading medication instructions, reading a menu, reading the ingredients of a product in a supermarket. My eye sight is pretty good, I'm a little long-sighted but not enough that I notice it. Given the choice of not being able to read the medication instructions myself or not, I'll take a little pain and just do it.
I can't watch TV or go to the cinema, screens with moving images are a massive no no. Though this symptom only appeared 5 years in. Screens in general are a big problem, though I have learned tricks to deal with that (see my counter measure further down). I can look at a poster and that is fine, but the same image on a screen is a problem.
Of all my triggers, this is the hardest to overcome and the one that has lead to most problems.
Pain on light refraction (glasses and fish tanks)
So looking at fish tanks are like a physical attack on my eyes. There is a great science museum near to where I live and they have amazing fish tanks and a massive "flooded forest" with huge fish, crocodiles, turtles etc. It is great but I can't look at it or else I feel the pain dial start going up immediately.
Likewise, glasses for my farsightedness only provoke an immediate attack of pain. So eyes, listen to me: don't get any worse because then I might actually get eye strain on top of my current symptoms. Still, with a massive computer screen and 300% magnification, I don't really need to focus much to see each letter.
Bright Light (Especially blue)
Light sensitivity. Basically this is a non-issue these days. When I am outside, I wear 2% amber glasses with full shielding around the side and bottom of the glasses and I wear a cap to stop light coming in over the top. 2% refers to the glasses only letting 2% of light through and they block out blue light, UV and infra-red. The cap is a great weapon against the sun and is also indispensable.
When inside I orient myself away from windows. So that means selecting the right place at a table in a restaurant or in a meeting. I have chosen a flat which is pretty dark and I only have to think about orientation in the late afternoon when I am in the living room.
At one point my light-sensitivity did get a bit out of control and I lived in a room with all the lights off and the black-out blinds down. I learned to touch type though that set off my RSI in my wrists so I ended up sticking fluorescent stickers on the home keys and some other keys so I could just about detect where the keys were in the darkness. I was using a screen reader at that stage so I could hear what I was typing.
When using my computer I have the brightness and contrast just right and have colour inversion so that everything is white on a black background. I also wear 10% amber sunglasses with the full shielding at the sides and wear my cap. I also have the ambient light levels just right.
Anyway, these days this trigger is 100% controlled.
A cold
I know when I'm getting a cold because my first symptom is an increase in eye pain that has no other correlating trigger. I have a cold right now, a bad one and I'm in the burning optical nerve level for no other reason than the cold. No worries, it will dial down in a few days. This trigger never causes uncontrolled levels of pain, so I just put up with it and don't worry about it. I mean, I've had pain for 12 freaking years now, I got used to it.
Alcohol and Smoking
The last two times I smoked a cigarette ended up giving me two week long episodes of intense pain.
Having any glass of alcohol increase my eye pain. If I just have one drink then I'll get a mild increase for a day. A good number of drinks will give me elevated pain for a few days.
So I am a non smoking teetotaller these days.
Counter-Measures Against the Triggers
Limit Eye Focusing
I use a computer for my job so I that means I need to focus my eyes all day. I have had different strategies in the past depending on the severity of my symptoms:
My current approach is to use a 36 inch screen with 300% magnification, with the screen set about a metre and a half away from me. Each character is about as tall as the width of my finger.
In the past I used a projector to create a 2.5 metre screen on the wall, set about 3 metres away from me.
Also, for a few years I used a screen reader when the symptoms were at their worst. I used JAWS and also NVDA. They have a BIG learning curve and I wish they were a lot better. If you can't look at a screen at all then use a screen reader. For consuming blog posts, the news etc they aren't too bad, but in terms of being some kind of knowledge worker they can be very difficult to use. Get help from an expert if you can.
I like reading a lot. But I can't read a book so I use an Amazon Kindle with Text-to-Speech. It's voice is a bit computer like but it isn't that bad at intonation and inflexion. I can "read" while I go to the shop, walk the dog, do the dishes etc. In fact, because I can do other things at the same time, I read more now than I used to. If you don't like text-to-speech then get an Audible account.
Use services like www.zamzar.com to turn documents into MP3.
I can't watch TV and I don't find anything I like on the radio. Podcasts! I listen to hours of podcast everyday at 1.5x speed. If you have an iPhone then use the Podcast app. On Android I am sure there are also great podcast apps.
Just some general rules:
Have a smart phone sure, but don't use it as a content consumption device! I use mine for podcasts and Spotify, and the Whatsapp messages from my wife. I am not a member of any Whatsapp groups and I don't communicate on Whatsapp with any friends. Stop looking at your smart phone!
When you Skype your friends and family, if you keep the video on, then don't look at it except for glances. Look above or to the side of the screen, your friends/family will know why you never look at them.
If something requires a lengthy period of looking at a near object: a big form to fill in for example, then delegate it to a loved one. If no loved one is there then just ask someone else for help, just say that you don't see so good, you don't need to explain your weird eye pain thing to strangers.
Light-Sensitivity
I wear 2% amber sun glasses for outside and 10% amber for screen use. See my screen sensitivity blog post for details.
If your apartment/house has a lot of light coming in then you might have to wear sunglasses while at home. I found this hard as there is a lot contrast difference. You look at a window and it is painfully bright, but then if you wear sunglasses you can't see inside your house very well.
I moved to an apartment that is relatively dark. It has become a non issue for me now. An alternative is to add a filter to your windows, like they do in some office buildings. Cut down the blue light and light intensity and get blinds that diffuse the light coming in.
Timeline
- 3 Months
I got a neck injury 3 months before the pain started. I was in a climbing gym and over exerted myself causing a neck spasm. I think it might be the root cause of the pain. It could be a coincidence but my feeling is that my neck was what kicked all this off.
I think of it as a neck injury because my neck is always tight, but the injury itself seems to be soft tissue damage around the T3 vertebra. It is still painful and I have to be careful with my posture and avoid certain activities.
I have had X-Rays, MRI scans and all looks normal. I saw a spinal physiotherapist but saw no improvement. I tried Yoga and other stretching but stretching, no matter how carefully done seems to make my neck and upper spine more unstable causing periods of extra pain and lots of clicks. So I avoid stretching of the muscles around my neck.
Later in the timeline, year 8, you'll see what did help a little.
Year 1 - 2006 - 26 years old
The initial symptoms were just pain on eye focusing. However, for the first few years TV and cinema was fine. Light sensitivity was also not a problem, this came years later.
I saw an optometrist first of course. But my glasses were correct. So I saw another two, and they also confirmed my glasses had the correct prescription. Next I saw doctors, and got MRI scans and X-rays quickly. All clear. Neurologist had no idea, ophthalmologist had no idea.
I had to give up my job as a programmer when my GP would not sign me off work sick any longer. He said I was fine. I moved back into my parents house and entered a 6 month period of depression. I waited for tests and appointments and sat at home not knowing what had happened to my life. I used to read a lot, I used to be a programmer and I loved cycling and climbing and I lost it all.
Year 2 - 2007
I got work as a waiter as it didn't require me to read anything. That was hard for me as I was a programmer in my heart and all the other rewarding jobs I could think of were either requiring some reading or physical work. I was severely restricted by what my neck allowed me to do. I saw a spinal physiotherapist but found that the exercises only made my neck more painful. I saw an osteopath and while I found the sessions increased the well-being my body generally, it did nothing for my eye pain or neck.
I couldn't get more treatment on the public health system and couldn't afford private. So I just got on with life.
Year 3 - 2008
During all this time I would periodically search for answers online. The doctors available to me had exhausted the tests they could do. One even suggested that I was lying because I looked up to the left when describing my history. This refers to the belief that looking up and to the left indicates that you are creating rather than reciting. Since then I found out that this directionality is reversed in 20% of people. Anyway, I was getting nowhere, doctors had no idea or thought I was lying and I didn't know what to do.
Towards the end of 2008 I realised that if TV and cinema were fine then I could probably use a projector and work in an office again. After many interviews I found a company that would hire a programmer who needed a massive projector screen. It worked, though the pain was high. It left me spent at the end of each day but I started to get my life back as a programmer again. I was still wearing glasses at this point.
Year 4 - 2009
I saw an eye training specialist who helps children with lazy eye and who helps sportsman improve their eye focusing speed. My convergence was poor and my eye focusing was a little slow. We spent six painful months improving both. It was painful because all the exercises involved eye focusing. But after 6 months I had excellent convergence and eye focusing speed. But it made no difference to my eye pain.
Towards the end of 2009 I noticed my pain levels were very slowly climbing. The projector screen was working but it was leaving me more and more wasted at the end of each day.
Year 5 - 2010
The beginning of a two year downward spiral of pain and the accompanying emotional distress.
The first signs of a problem was that I found it hard to look at someone's face when talking to them. Focusing on faces had never been a problem but now I had to avert my eyes from anything near at all. I got a pain episode that lasted a few weeks because of a long walk through the neighbourhood at night, looking for apartments to rent - it was the street lights and car headlights.
Soon enough I stopped being able to use a projector screen and my employer was amazing. I continued working even though I couldn't use my computer. I stayed at home and worked over the phone, programming over the phone using a junior programmer as my hands. It sounds really weird now but it kind of worked. The junior learned a bunch of new things and I could program, even if it were via an 8 hour phone call everyday.
By the end of the year I couldn't watch TV or go to the cinema anymore. I couldn't even play a board game. My eyes were super sensitive to focusing now. I had the black-out blinds down all day, letting very little light into the house due to my light sensitivity.
The pain was very bad now. Not quite clawing at my eyes level but still all consuming. I lived in the dark, read nothing at all and despite that the electrical buzzing pain in my eyes continued. Also I had to stop wearing glasses, the glasses were now a pain trigger.
I saw another neurologist and ophthalmologist with another brain MRI and various types of eye test. Eye pressure, flashing light tests etc. No problems detected.
Year 6 - 2011
Working over the phone wasn't sustainable so I learned to use a screen reader and moved from 100% programming to a mixture of technical writer and programmer. I worked in near darkness as any light was a problem. My light-sensitivity was really really bad. I only went outside at night. No sun-glasses were strong enough for the day time.
Enough light came into the room so that I could see my keyboard but focusing on the keyboard when typing provoked unmanageable pain levels in my eyes. I learned to touch type but it gave me RSI in my wrists. So I invented a novel technique. I dropped the black out blinds so that there were no cracks between each slat. I stuck fluorescent stickers to some keys so I could work out where the keys were. The near total darkness coupled with the stickers meant that I could just about make out the keyboard but my eyes couldn't focus, hence no pain provocation from typing.
Generally life was pretty tough. The pain itself was this monster that would just not let up and not leave me alone. It was really tough. Work was stressful because I found productivity a real problem and constantly worried that I wasn't up to the job and would get let go in the end.
Year 7 - 2012
The light-sensitivity calmed down a lot and I no longer had to live in the dark. My mountaineering sunglasses that let 7% of light in were enough for all except the brightest days.
Work was still a struggle. I found using a screen reader a daily battle with my programming software and project management software. Work was often about what I could and couldn't do. We assigned tasks to the team members based on my ability to carry out the tasks or not. It was really frustrating. I had to work much harder and be more dedicated than my team members. I compensated for my limitations by spending more time learning and being technically more competent.
I found a neuro-ophthalmologist that specialised in eye pain. I was excited as I figured this guy could help me. He wasn't cheap but I hoped he was worth it. But in the end he had never seen anyone with my symptoms before. He guessed that my brain had lowered the pain threshold in my eyes and optical nerve to zero. This meant that any signal was interpreted as pain. Signals for muscle contraction for example. He said that once the brain reaches this point it tends to stay there. Central sensitisation is one term that he referred to. So the prognosis was that I would continue to suffer the eye pain and there was no cure, and this thing had no name.
Year 8 - 2013
The year ended well but started badly. All my symptoms were bad, I was losing emotional stability and I was working long hours and studying hard via Kindle Text-to-Speech and I knew I couldn't sustain it. Working through the pain leaves me feeling wasted, the pain itself is draining and the constant battle to get work done at my programming job left me feeling burned out. It wasn't sustainable. Then I got laid off.
At first this seemed like a disaster but it turned out to be a turning point. In the latter half of the year two things happened: I got a treatment that actually helped my neck and I got a job in an office with amber filters on the windows. I don't know if both, one or none contributed to me being able to go back to using a screen. The problem is that my symptoms have morphed over time so it could have been another transition. Or it could be the treatment, or the special lighting conditions in this office.
The treatment
After being laid off I started being treated by an osteopath again. I had seen a few over the years without success, but she was different to all the others. We concentrated on upper body flexibility and stretching out my tight fascial tissues of my neck, arms and chest. I had no job so I had plenty of time to do her stretching exercises, I spent 3 hours a day doing the stretches. I got back a lot of mobility in my neck, chest and arms and some reduction in pain.
The New Office
Two months after starting my neck treatment, I also got another job after many many rejections (due to me using a screen reader). But after three weeks on the job with my screen reader I found I could look at the computer screen for short periods. With a screen reader, sometimes you get stuck, so in those situations I would look at the screen to sort it out. This "cheating" as I used to call it, had to be very brief, but somehow my "cheating" escalated until I was doing it for periods of 30 minutes. This was new and exciting!
I then discovered the screen magnifier and found that I could look at the screen for a few hours each day. Not all day, but about half the day, on and off. After two months on the job I could do a whole day with 300% screen magnification while wearing sunglasses.
The lighting in this office is special. It has an amber filter on the windows and it is mostly glass with very little concrete wall. The windows are floor to ceiling. So the contrast is not intense and with blinds to diffuse the light and it can be quite ambient. There is no strong contrast like when you have windows that poke through a concrete wall.
Also of note that year was contact with an eye pain specialist in the USA. We corresponded by email and he said he had one patient with almost identical symptoms and with the same negative results on all scans and tests. He said that he had theories about it and those theories ended up matching the neuro-ophthalmologist I saw the year before. My brain seems to have gotten itself into a panic state and is interpreting all signals as pain. The more work my eyes do, the more signals, the more pain. He said he knew of no cure.
Year 9 - 2014
I got promoted to tech lead, and moved to the central office to lead a small team of programmers. Within a month at the other office my pain levels reached the worst level ever and I ended up being off sick for three months and on some seriously potent pain killers. It was a disaster and suddenly my whole world collapsed again. It was scary as each time I had a major flare-up over the years I was never sure it would let up.
But it did in the end and I moved back to the original office and slowly got back to being able to use a screen again.
Why things went wrong in the central office I don't know for sure. The windows are small and the contrast is intense which is a big problem for me. But I moved myself to a part of the office where I couldn't see a window and it made no difference.
My other strong theory is the office air freshener. It was overpowering for me personally though others said it didn't bother them. For me it was like getting hit by a wave when entering the office. I know that chemicals can be triggers for me (smoking, alcohol), so it could well have been the air freshener.
The rest of that year was fine with no more major flare-ups - just the never ending base level with minor flare-ups.
Years 10 to 12 - 2015 - 2017
My eye pain has remained stable though still constant. With screen magnification, a cap and sunglasses I can work a 40 hour week. I can pull 50 hour weeks but then my eye pain gets quite elevated, though still manageable.
In 2014 I bought my Noir Medical sunglasses. 2% amber for outside and 10% amber for computer use and this definitely helped.
Being able to use a screen has revolutionised my career. The years of struggle with a screen reader forced me to compensate by taking my learning to another level. I was obsessed by being the best technically, spending hours listening to books on computer science, database internals etc. It was driven by fear mostly, being a parent and the sole contributor financially, I was terrified of not being able to pay the rent and provide for my family. Now that I can use a screen again, I can apply all the knowledge and skills from my years of learning and have had career success.
Year 13 - 2018
This has been a good year for me. My symptoms have eased a little. The pain is slightly reduced and some of my triggers have eased. My light sensitivity has reduced somewhat, now I only need to wear my glasses when in direct sunlight or somewhere with a lot of reflected light. In the shade of a building or a cloudy day I am get away without the glasses. My sensitivity to alcohol has pretty much gone, so I can enjoy a beer again. Also, I can manage to watch a film, as long as I wear my 10% amber glasses. Mid 2018 I managed to watch half a film, then a couple of dfays later, to watch the second half. The pain was a problem but manageable. Now at the end of 2018 I have been able to watch en entire film with only modest pain.
I continue to need to wear my 10% amber glasses for computer work, with a large screen with 300% magnification. But my eyes bother me less at the end of a days work. I can even manage a few minutes reading on my mobile, with the text made super large. I did give myself a mini-flare up doing that though, so I need to avoid mobile screen use to a few seconds ideally.
My chronic neck pain continues but most of the time it doesn’t cause me too much suffering. I’ve had a couple of neck spasms that have put me in bed, but overall nothing dramatic. I just need to ensure I have good posture, not wear a back pack or carry anything heavy and it remains stable. The neck pain is now the biggest cause of pain, now that my eyes have eased a bit.
That is where I am at now. I am hopeful for the future that my symptoms may continue to ease. I haven’t really done anything to get this easing, just continuing to avoid my triggers. At this rate, I might even be able to read a book again in 3-4 years time who knows.
Year 14 - 2019
Continued very slow reduction in symptoms. I can go outside without glasses on a cloudy winter day. Sunny winter days I wear regular sun glasses. Still my mega dark ones in the summer though.
Also, I have reduced my screen magnification to 200% from 300% and wear my special computer use amber sunglasses less and less. The pain is mild most of the time I’d say (at least after 14 years of pain it seems mild to me), I am very good at avoiding/mitigating my triggers which is still key.
So all in all, I am coping well.
Year 16 - 2021
Continued slight reduction in symptoms. I don’t wear my amber sunglasses for computer use at all now. Living a normal life, with just a few restrictions.
NOTE on a POSSIBLE LEAD
I got a comment on this post with a very promising lead on a possible cause for my symptoms:
Have you ever looked into Primary Trochlear Headache or Trochleodynia. Check it out and let me know. You might have this.
https://www.frontiersin.org/articles/10.3389/fneur.2019.00361/full
So go check it out and take it your your neuro if it looks like a match. The research is pretty new (2019) and this issue is very rare, so don’t be surprised if your neuro hasn’t heard of it.
I have still not looked into this as the pandemic hit. If I get an update related to lead this I will post it.
For those in pain, hang in there. My only advice is don’t give up looking for a doctor that can help and be proactive about changing your lifestyle habits. For me I found my tricks like with the glasses and screen magnification. You will likely have different symptoms but there might be things that work for you, you just need to experiment. Good luck.