Tuesday, 23 February 2016

My blepharitis nightmare - will I ever find a cure?

So this post is a bit different to what you might usually see on tea books eyeliner but I really wanted to get this one out there and see if anyone else is going through this. Since a sudden flare up over Christmas which has been followed by weeks of discomfort and going back and forth from the doctors office I've been diagnosed with an inflammatory eye condition called blepharitis. It hasn't been a lot of fun. To put it bluntly it's been an irritating, uncomfortable and downright depressing pain in the butt that means I can't really wear eye makeup any more. It makes me want to hide away and sleep forever because that's basically the only time it doesn't bother me.

Warning: this is a long, at times gross post so stop here if you're not a sufferer/not interested.

What is blepharitis?
Blepharitis refers to the inflammation of a very specific area of the eye - the lining/waterline area and the skin surrounding the base of your eyelashes. I've included a diagram from google to kind of illustrate that a bit better as trying to explain it to people has been difficult in itself. I'm going to talk about my specific symptoms but you can find out more about other symptoms and read about it in more detail through a quick internet search.


What causes blepharitis?
To be honest the picture I'm getting from the medical world and from sufferer forums is that nobody really knows. The term is used to refer to this very specific group of symptoms but people seem to have a whole host of theories as to what's caused theirs. Most cases are thought to be caused by blocked oil glands within the eye's lining, which can cause swelling and the build up of gunk. I have also heard doctors blame makeup for passing on bacteria or causing reactions however my doctor doesn't seem to believe the problem is bacterial. It is also linked to allergies, dry eye and with the taking of medicines that cause dry eye, as well as dust mites and moulds. There is no known, definitive cure - everyone is different. Some people will have this for years and some severely, while some claim to have cured theirs in under a year.

What are my symptoms and how did they start?
It started quite suddenly for me on 27th December. I had been given the beautiful Gwen x Urban Decay eyeshadow palette for Christmas and applied a smokey look for an evening out with friends. As we were talking to the pub I began to notice a burning sensation on my lids but mostly my lashline. I had had a strong allergic reaction to an Eyeko liquid liner back in October (which calmed down within 48 hours and returned completely to normal after I removed it and soothed my skin) so I worried I might be having a reaction to this. 

I should note that other than the above I've only ever had one other allergic reaction to a beauty product, which was a concealer that made my eyes itch and again this ceased when I stopped using it. I had also been using the palette for the previous two days without any problems so I cannot be 100% sure that this wasn't just a coincidence. I'll probably never really know if I could have done something differently that weekend to have prevented this and that's something that really bothers me.

On New Years Eve I was particularly upset as I couldn't apply my eye makeup. I was playing around with the colour settings on my new Olympus Pen camera and it picked up this along with my lipstick:

Not a good look lolll

What did I do then?
After a week of tingling, itching, redness and burning sensations around my eyes I decided to go to the doctors, thinking I must have conjunctivitis. I binned my mascara, brow gel, eyeliners and brushes just in case they were giving me an infection but my GP dismissed it as an allergy and told me to use dry eye drops and it would go away. My symptoms across both eyes include redness around my lashline, soreness at the base of my lashes, a burning, itching sensation, some swelling that goes up and down but is in itself not too bad. Since this all began they've felt quite dry and don't water very much however I've done plenty of actual crying which is no struggle at all. I get some light crusting on waking on bad days but not severe and never with actual pus.

Three weeks in there was no change (in fact it got worse) so I returned to see a different doctor who straight away told me I have blepharitis and without any further explanation or elaboration told me to use hot compresses and clean my lash line with a baking soda solution. This has helped slightly to soothe but overall not made much difference.

I also noted while discussing the possibility of allergies with the doctor that I had just two weeks prior to my symptoms starting moved in with Mat's parents and their dog. I moved out for a week in case I was allergic to the dog or maybe some dust mites I wasn't used to however there was no change. During this time a blood test also found me to be very vitamin D deficient as I work in an office with no windows so get absolutely no natural daylight during winter. I'm now on a prescribed 'megadose' supplement to restore my levels and have to carry on with a normal dose thereafter but this takes time and isn't likely to have been the cause although it may have compromised my immune/inflammatory responses and helped bring this on. I've been going outside every day on purpose and even if it doesn't really help my eyes it's improved my mood.

Throughout this whole process my doctors have refused to test for any bacteria or possible viral/fungal infections which has baffled me as they are still unable to pin down a cause. I've now been referred to a hospital ophthalmology department but the NHS waiting list is months long. We looked into private treatment but it's far too pricey so not something I can do right now. All the best private treatment for this condition seems to be in Scotland or Devon so again not ideal.

How am I treating my blepharitis?  
Naturally with my GPs unwilling (or unable) to suggest home cures I took to the internet and I am currently following the following regime twice a day, which is a bit hit and miss, quite time consuming to keep up with and has cost me a lot of money:
  • I use this heat bag for 5 minutes - the idea is that if my glands are blocked this will loosen things up
  • I then massage the eye area gently with downward/upward strokes towards the lashline
  • Next I mix a little boiled-but-cooled water with a pinch of baking soda, dip a cotton bud in so it's damp but not soaked and wipe along each waterline/lashline. I use 4 so as not to spread any possible infection
  • This process can be a bit drying so I then massage in a small amount of coconut oil and rinse off any excess - this part feels so damn good when my eyes are sore
  • I finish off with Celluvisc lubricating eye drops as my eyes themselves sometimes feel a bit dry and sting. I use these three times a day. They help for about an hour then the itching skin returns.
Other steps I am taking:
  • I have worn mascara 4 times this year. I use a disposable wand each time so I don't contaminate the tube with anything and remove with coconut oil as soon as I get home. It doesn't cause me any additional discomfort during wear but my skin is slightly more sensitive the next day. I have not worn eyeshadow or eyeliner since the first flare up, much to my own dismay.
  • I've taken to using tea tree based products as supposedly this can help kill any bacteria/microbes/mites that may have found a home in my eyelashes. This includes shampoo, facewipes and body wash. I wouldn't say it's made a huge difference to my eyes but has helped my skin?
  • My skin really dried out and became itchy at the same time my symptoms started, which was probably a coincidence but was hella confusing. Using Aveeno products on my body and Dr Organic's Manuka Honey Rescue Cream as recommended here on my facial dryness has really quite dramatically helped this - I'd recommend this to anyone with dryness/itchiness.
  • I've also seen a large number of posts in forums about a chemical known in the US as Benzethonium Chloride and in the UK as Benzalkonium Chloride - You can find this in strong amounts in Wet Ones wipes (which irritate me), in Carex wipes (which don't but also don't seem to be as strong), and in Freederm face wash. I've been using the face wash twice a day with no improvement but have found some short-lived relief when using the Carex wipes - I need to try and use them 2-3 times a day before I'll know if that works so I'll keep you posted
  • I can't change where I'm living so I make sure I dust and hoover at least weekly (with my glasses on to help protect them) to ensure things are clean and tidy, as well as using hypo-allergenic pillows and changing my towels, bed covers and pillow cases weekly.
  • I rarely use makeup brushes now but when I do I spray them with an alcohol solution afterwards and wash in baby shampoo and very hot water weekly. I leave them to dry on my brush tree so I know they're good to go.
  • I also take a posh Omega 3,6 & 9 supplement to try and help my eyes oil up although I know the benefits may not be seen for months.
Where to now?
In all honestly I just don't know. I keep dreaming that one day I'll wake up and everything will be back to normal. Before all of this I absolutely loved makeup and how it made me feel about myself - now I feel self conscious most days and dread social occasions because it means having to painstakingly apply just mascara in such a sterile way just to look normal. It's actually taken a massive toll on my mental well being and I know that sounds quite silly but it's true. I've lost a safety blanket and a big part of my personality. 

The discomfort is barely noticeable some days, only to return full whack the next when nothing has changed. I'm in a bad patch right now and the sensation of wanting to claw my own eyes out when I know I can't sit there scratching the skin can get a bit much at times. This week it's even been waking me up in the night and staring at screens for work is doing nothing for it.

I also worry, having seen how bad some people have suffered, that my symptoms may worsen. This can lead to some horrifying symptoms such as eyelashes and eyebrows falling out, and your eyelids turning in on themselves. It keeps me up at night sometimes I won't lie.

I know this is a very superficial problem to have, and it could be way worse, so please spare me those kind of comments. Regardless of this the fact that nobody can tell me how I ended up with this painful problem, or how to get rid of it, has been very hard to deal with. The symptoms alone are enough to drive anyone insane let alone the process of trying to find yourself a treatment.

If you've encountered blepharitis before or have any suggestions on how I can care for it, please leave a comment below - I'm desperate to get this condition out of my life or at least under control.



  1. Hi Kelly, I could of written this post myself....

    I have had Blepheritis since September 2015 and it has been a miserbale road so far. I have tried various things including supplements, IPL therapy, steroids and am about to start a course of antibiotics.

    Completely agree that it feels that a peice of my personality has been taken away....I'm scared I'm not the same person anymore.

    There is a Facebook group that I'm a part of that is really helpful, plus its great to talk to others in the same boat.

    Hope your eyes aren't too bad today.

    Vicky :)

    1. Hi Vicky,

      Amazing to hear from someone in the same boat but sorry that you're also suffering! Do you find it's noticeable to others? Most people can't tell by looking how uncomfortable my eyes are so it's hard to get the point across as to why I can't wear makeup!

      Do you have a link to the facebook group as I would love to join!

      Kelly x

  2. Hi Kelly,

    I know, its so miserable isn't it! Sometimes mine swell up a lot so you can tell unfortunately. At the moment I'm trying different make-up products to see if I can tolerate anything as I cannot picture a life without it! The world does not need to be subjected to that either! Haha.

    If you go to Facebook and search for Blepharitis advice and support centre then it should come up. You will need to be approved by the admin Mario Looney, but he will usually do this very quickly. Its absolutely brilliant and there are loads of people who have got un under control and are wearing make-up again... there is hope! :) If you have any trouble then let me know and I'll see if I can post the link (at work at the moment so cannot get on to Facebook on the computer) x


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