Not: What is photophobia? but: What can you do about photophobia?

What is photophobia What to do

What is photophobia is clear, but What can you do about photophobia?

What is photophobia is a relevant question until you are not sure you have it. Once you know you have photophobia, the really important question becomes What can I do to improve the quality of my life?  This is because photophobia is likely to be affecting negatively your professional and personal life. I have been reflecting on this question as I was preparing a summary of the state of research on photophobia (see What is photophobia: definition, symptoms, causes, definition part 1 and part 2). Here are my afterthoughts.

First let me summarize:

1. Photophobia definition and photophobia symptoms are clear

  • Photophobia is a common symptom.
  • Photophobia is a debilitating symptom, affecting importantly one’s life quality.

2. Photophobia causes are poorly understood

  • In adults the cause of photophobia may be identified most of the time but not in children;
  • There are many possible causes (ocular, neurologic, psychiatric, etc.). Often a constellation of causes (see Photophobia: Looking for Causes and Solutions) might be responsible for photophobia.
  • Causality is clear in the case of few conditions associated with photophobia, even in these cases the causality does not hold for all people;
  • In many cases (most conditions connected to photophobia) causality is blurry at best. The researchers speak of conditions associated with photophobia.
  • Identifying the cause of photophobia is in most cases very difficult, even for those MDs who focus on photophobia.
  • A lot of research on photophobia causes is still needed.

3. Photophobia treatment – are there any really known treatments?

  • Photophobia treatment depends on the cause (but most photophobia causes are difficult to diagnose).
  • Most clinicians won’t know what to do with photophobia.
  • Few MDs make photophobia their specialty.
  • Even if seen by the best photophobia clinician success is not guaranteed (too little is known about photophobia causes and less still about photophobia treatments).

So then, what can you do about photophobia?

  • The first thing would be to go see a doctor. If I could afford to be seen by the authors of the article at the Departments of Ophthalmology and Neurology at University of Utah, I would try that.
  • You might try writing to them to ask about any colleagues who work close to where you live. (I am about to do that, maybe I am lucky!? I just thought it might be helpful to have a list of photophobia specialists on GLARminY! – What do you think?)

But what if medicine cannot help you?

Given the state of our knowledge of photophobia causes and photophobia treatment, this outcome appears likely. Then it seems you are left to our own ingenuity in learning to live with photophobia.

The good news is that there seem to be very many of us and then there is GLARminY. According to Shedding Light on Photophobia, photophobia is a “common symptom”. What is not clear is how common? (In my country – Slovenia – around 5% of the population complains about glare and light related pain/discomfort. If this statistics holds for the world there should be many millions of people suffering from photophobia!)

GLARminY is at its early stages, and currently authored by only one person (me), but the internet affords us the possibility to put our heads together, share our experiences, perhaps some day even exchange products that will have helped us live more normally. I even dare imagine GLARminY serving as a meeting point between a large pool people with photophobia and the researchers. We’ll be better off if we help each other.

Let me know in the comments if you like the above ideas; do suggest others!

If you have photophobia, do sign up (right side bar) to receive new posts by e-mail.

If you’d like to contribute in some way, let me know via the contact form (main menu at the top).


In case you haven’t seen the previous three posts on What is photophobia, they are based on the scientific overview of Photophobia related research. See Shedding Light on Photophobia http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3485070/#R87 by K.B. Digre, MD and K.C. Brennan, MD, published in the Journal of Neuro-Ophthalmology in 2012.


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2 Comments

  1. Hello! I was wondering if you’ve ever heard of photophobia due to presbyopia. I saw many doctors and finally figured out that at least some of my photophobia was age-related and was connected to my reading prescription changing over time. Also significant was that one eye was much more presbyopic than the other. Once this was corrected for with the appropriate glasses, my photophobia improved quite a bit. However, my prescription (and the accompanying glare sensitiivity) keeps changing, which is frustrating.

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    1. S Vegunta: thanks for your comment!

      Unfortunatelly I haven’t heard or read about photophobia due to presbyopia (farsigtedness). I have the cited article “Shedding Light on Photophobia” and it is not listed there as a condition associated with photophobia.

      However, as I read your brief personal story about your glare sensitivity I see some paralels my story:
      – photophobia/glare sensitivity is a mystery. There are many possible causes and difficult (when not impossible) to diagnose.
      – photophobia and glare sensitivity are the domain of Neuro-Ophtalmology, because our vision depends on the whole visual nervous system, i.e. the eye (sense organ), nerves and the brain. It truly is quite mysterious (I begun to understand it once I have learned about Irlen syndrome.
      – most eye doctors (ophthalmologists, not neuro-ophthalmologists) know little about light/glare sensitivity. Their primary focus is on the eye (just the sense organ). They try to fix most problems with glasses.
      – in my case (as in yours) glasses felt better at first, but didn’t erradicate the problem – it persisted, so the next time at the eye doctor I got stronger glasses…
      – before giving up on doctors, look for a neuro-ophtalmologist …
      – but most of the time you’ll be left on your own. Experiment to figure out what exactly is your problem and learn the tricks to live with it – when you’ll have done it, do let us know how – here, on this site – you will help other people that have a similar problem solve it quicker.

      Note also, that there are exercises that can help you reduce your farsightedness. The method is called The Bates Method. Look it up. It might be worthed.

      Don’t give up in your quest to overcome your problem! I’ve been struggling with my eyes since 2008. About half a year ago (march 2015!) I tried filtering blue light because of sleep disorder. Over the past six months, I realized my problem with glare was to a large extent due to blue light. I also noticed that if I am smart about avoiding blue light most of the time glare doesn’t bother me as much anymore, even without the orange glasses – (as was the case when I was younger).

      So, do fight this problem and remember to tell us about it when you’ll have figured it out!

      I hope this helps you! Best wishes, 🙂 Uroš

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