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.