Severe photosensitivity

[Mifford]

Hi everybody. Not sure how to start my first post but I'm hoping my recent experiences might help others. I was diagnosed with lupus about 5 years ago now and I was told that my photosensitivity and migraines etc were all part of it and prescribed sunscreen etc. None of the meds I have been taking have been working and it was suspected that I was allergic to one of the ingredients and possibly also to my sunscreens as I was having stronger and stronger reactions. To cut a long story short I was eventually referred to the photosensitivity unit at Guys who confirmed a full diagnoses of solar urticaria. The surprise element being that this is to ALL visible light right up into the 600nm range.

As you can imagine this came as a bit of a hammer blow and it was like being told I was allergic to air so it's taken a bit of co ing to terms with. Over the last month or so I have been trying to find any solutions that will help me with what is a very challenging addition to my lupus diagnosis, especially as the consultant has stated that my photosensitive joint pain is lupus related and won't be helped by high dose anti histamines. As part of this I will be having a specialist film applied to my windows (already have uv film which isn't sufficient) and have been prescribed Dundee cream (my GP won't prescribe - part of another long story!) but have struggled to get help with my computer screen for work and my iPad, reading from white paper which hurts etc etc. I was assessed by Access To Work to try and help but they were equally stumped.

Today I visited an opticians in Kings Hill in Kent who tried me with high level grey tinted sunglasses (MUCH better than my Amber I've been wearing) and trialled a new product for glasses called copper mesh. As soon as he put them on it was unbelievable and the difference was quite literally mind blowing. I could instantly feel my eyes, and subsequently my whole body, relax. I had no idea how much I had been squinting until now but it felt as if my eyes doubled in size. It's really difficult to describe the difference it made other than as the difference between watching SD and then switching to HD. We think I have been severely photosensitive since I was about 10 so I had no idea that what I see isn't the same as everyone else and that everything is flat and washed out. I asked the optician to describe the colour of a random item I pointed out to him - it was quite a bright lime green which is how he sees it and how I do with the lenses on but as soon as I take them off it turns flat, far too bright and far more what I would describe as apple green. I got home and my fiancé asked me how it went - I found myself with tears running down my face when I told him that I've just realised that today is probably the first time I've seen colour properly in at least 35 years and possibly ever. And I never even knew.

Taking them back off I realised how much light actually hurts and although they offered me to take away a demo pair to try there is no doubt whatsoever rpthatbthese are essential for me so I have ordered these to pick up tomorrow. Not cheap in the slightest as I had to buy frames for £200+ to provide maximum cover and be ones I'm not allergic too (honestly this really is the short version!) and another £249 for the special lens and the sunglasses were about £250 too do the whole lot came to around £735. I just hope that I can recover as much of that ad possible from Access To Work as part of my specialist work equipment!

Anyway - sorry for such a long post and I hope it's ok to post about something like this - I promise I'm not selling and have no connection etc etc but if anyone else suffers severely from photosensitive migraines etc and nothing else has helped then I hope it might help them find some relief.

[Bronagh2015]

A very very interesting post Mifford! A lot of us on here can empathise with you, awful to be diagnosed with something so serious and life changing BUT such a relief to at last receive proper help and proof that you're not a head case!!

[Mifford in reply to Bronagh2015]

The proof I'm not a head case was a very big part of the emotion when I was finally diagnosed - even I started to believe I was going off my head and imagining it! Finding the new glasses was a bit of a random pure luck thing so I'm hoping it might help someone else and prove to be as much of a revelation - you never know

[linda96]

Hi Mifford, so pleased you are finding solutions to your photosensitivity although it's proving to be costly.

Iv got photosensitivity and after another holiday spent dodging the sun last year haven't bothered going this year.

My sensitivity hasn't been tested although the hospital have labelled it severe. I don't know anyone else with it personally so can't compare notes.

I was told, probably like you, that up to 60% of patients diagnosed with lupus have this sensitivity but the vast majority only have it mildly.

You didn't mention vit d levels, how are you doing on those?

I think I'll talk to my optician about different glasses for photosensitivity.

[Mifford in reply to linda96]

Hi Linda - my vitamin D was already low before I was diagnosed with lupus due to my under active thyroid so I've been taking high levels of supplements for a long time now. I used to get told to reduce them in the summer but now just take them the whole year round. My last test at Guys they marked as "adequate" so at my next rheumy appointment I'm going to see about getting that tested more regularly to keep an eye on it.

You have my sympathies on sun dodging - it's an all year long hobby now. I would say that if you are struggling more in the sun then it could be worth pushing to be tested at Guys to ensure it is Lupus causing it rather than anything running alongside. And if they can find out which light ranges you have problems with they can help more with advice and specific treatments. In my case there wasn't a great deal they could offer due to the extent of it but the bits they have done have helped significantly.

I'm more than happy to share knowledge if that will help too - I'm guessing you'll already know about things like Sunguard? If you're getting migraines from lighting I'd recommend having a look at the RNIB website too - they have glasses that block light. They didn't work for me as I found them a little bit too bright as I'm so sensitive and because the hinges had nickel on the metal and I'm allergic to it so couldn't wear them (you couldn't make it up) but they were significantly cheaper than the ones I'm having to buy to cover all my problems xx

[linda96 in reply to Mifford]

Thanks for replying- did you have to pay private to go to Guys?

I also have hypothyroidism, fibro, iBS, chronic fatigue, aps, etc etc the whole kit and kaboodle! I'm taking the attitude that the Olympics coaches took, one 1/10th Sec at a time. Just tweaking it as I go along.

I'm on injections twice a yr for vit d 300,000 units in a depo.

I'm under a good hospital in the midlands but I'll ask some more questions next time I'm there!

[Mifford in reply to linda96]

No Guys was NHS - my rheumy could have referred me direct but she wasn't totally sure so sent me to dermatology. As soon as I showed them pictures of how my skin reacts to sunshine and artificial lighting they just referred me straight on witHoyt doing any tests themselves as the reaction was so clear it would have wasted everyone's time as Guys do all the tests anyway.

I didn't know I could have vitamin D by injection - I struggled taking the one with calcium so my GP told me I'd have to buy supplements myself and I had no idea anything else was available. I think I may be looking into things more too!

[linda96 in reply to Mifford]

It was my GPs suggestion that she does the injections. She told me that was what used to happen before all the vit d tablets came onto the market. She had to get permission from local commissioning group to do it. But it's brill, I cdnt take the tablets, they caused me all sorts of problems, assuming it was the fillers.

Have I read somewhere on here today with one of our conditions we're not supposed to have the extra calcium in the tablets anyway.

Thank you so much for the news on the glasses and hope you continue to benefit from them.

[Paul_Howard Partner LUPUS UK]

Hi Mifford ,

Welcome to our site

We published an article a couple of months ago which includes loads of tips for people with light sensitivity which you may find helpful - lupusuk.org.uk/coping-with-...

Some filters are available for computers and TV screens. Some people who have difficulty using a computer find that a high quality projector is better for them (though it can be quite expensive). You can learn more about this at lupusuk.org.uk/eclipse/prod...

[Mifford in reply to Paul_Howard]

Many thanks Paul and I will certainly look through both links. The computer and tv screens that I've found have been for uv only whereas I need all light but will look into that too. The projector I liked at but for work I simply don't have the space for it. If it progresses further I'll definitely see if this is something Access To Workmwod help with down the line though. Thank you.

[1sam]

Mifford congratulations on your new and improved eyesight thank you so much for sharing... I had no idea lupus and migraines are related (I suffer from both) or that photosensivity could affect the eyes not only the skin.

This copper mesh sounds great, when I use my prescription glasses at work everything is annoyingly bright it hurts. There are softwares for adjusting the computer screen color/brightness, "irlen filter" they are called, but is not enough.

You've been through so much, I hope it only gets better.

[Mifford in reply to 1sam]

Hi 1sam - I had no idea it was affecting my eyesight to the degree it was either but having picked up the glasses today I feel l I've my eyes are wide open as if I've had 16 coffees! I had no idea I was squinting quite so much.

Migraines are certainly linked in some cases - my first meeting when I was diagnosed I was asked if I had migraines and said no as they don't last beyond a day and I don't get fuzzy lines and things like that. So the consultant asked me to describe my headaches ... And told me I just described a migraine lol all I can say is it's amazing what we get used to.

I heard about Irlen when I had my first PIP assessment 2 years ago but had no idea there were filters available via software for the computer. Are these easily availableto download? Might help with both my iPad and my laptop as the bright white background is really quite "offensive" to my eyes (I've decided offensive is the best word I can think of to describe it!)