Severely photosensitive - lighting advice needed

[Mifford]

Just a little background, I was recently diagnosed with solar urticarial after phototesting at Guy's and discovered that this is to ALL visible light across the entire spectrum and not just UV unfortunately. In addition they have commented that the severe reaction I get to UV light in particular such as bad migraines, breathing problems increased, dizziness, joint pain and swelling, being sick and severe fatigue are due to highly photosensitive lupus which won't be helped by the antihistamines that I am taking and is a separate problem. It explains a lot and I'm now in the process of absorbing how much of an impact this has on my life (in very small steps to make that manageable!) and trying to see how much I can minimise the reactions in a way I can live with to make that impact something I can cope with mentally, emotionally and physically.

As part of that I have made a lot of changes to my house now with a specific orange film on the windows that filter out the light spectrum up to 500nm and reduces the level that I react to and have had a lot of help from Access to Work with providing specialist glasses when I'm working on my laptop and flipping expensive sunglasses that block a large spectrum of light for the rest of the time which have had a significant help on my migraines etc. I work from home thankfully so the challenges of going out to work aren't there at least.

Anyway, one area that we have become totally stumped on is the question of lighting. At the moment I have enough incandescent light bulbs that I have been able to use these rather than energy saving bulbs until now and the filter film on my office window means that I can now open my office blinds for the first time in 15 years without feeling like I have sunburn and therefore don't need to have the lights on as much as previously. In the living room we put on lamps in the evening that are placed well away from me rather than having overhead lights on and that also helps but I can't do this in my office for work as it doesn't provide enough light - especially now we are coming into the winter months with it getting dark so much earlier.

I know that there are fluorescent tubes that can be fitted with filters for this problem and so on but because my office is a spare room in my house I don't really want to be putting up fluorescent lights - daft I know but I've spent years working hard to make my house nice and the idea of putting in something that I find really ugly just grates with me and I find the idea really depressing.

After doing as much research as I can online I've now got it pretty well fixed that the incandescent bulbs are the least challenging for me but obviously my supply will run out over time. Next option appears to be LED bulbs. With this in mind I've come up with information regarding the Hive lighting system where they have brought out a range of bulbs which can change colour or can be set from white to warmer in stages and dimmed to specific levels etc. This struck me as possibly being my best solution as I can dim them to the optimal point to provide the least challenge but enough light for me to work and set the colour warmth to ensure that they aren't bright white which I find very challenging. Or I'm wondering if getting the coloured bulbs and setting these to something in the amber spectrum (if that's possible) would help. This would also enable my other half to be able to change these to something less oppressive for him when I'm not in the same room which would be good as at the moment he feels a bit like he's living inside a lucozade bottle whenever he walks into the house bless him.

I can't find out any information as to the level of UV emitted by the HIVE bulbs though so wondered if anybody else with photosensitivity has tried these and whether they had any success or what other solutions people have found that solve the lighting problem as incandescent bulbs slowly disappear?

Apologies for the long post - I do try and keep them short I promise! Any help anyone with experience of severe photosensitivity can give is VERY much appreciated as the whole thing is just a bit of a nightmare at the moment to be honest.

[PMRpro]

I know fluorescent lights in the UK are hideous - but I live in Italy where there is extremely attractive lighting available for the workplace. Maybe you can find a source here? I'm sure I have seen what are effectively standard lamps with fluorescent tubes - beautiful tall long sweeping things that I'd cheerfully have over my desk

The loss of incandescent bulbs is infuriating - I would have minded slightly less if the manufacturers hadn't lied through their teeth about the advantages! But we replace LEDs and halogens even more often - and they cost a fortune...

But to your problem: I found these Usefull [sic] addresses

British Standards Institution, Customer Services, 389 Chiswick High

Road, London W4 4AL Tel: [phone]

Chartered Institution of Building Services, Delta House, 222 Balham High Road, London SW12 9BS Tel: [phone]

Lighting Industry Federation Ltd, Swan House, 207 Balham High

Road, London SW17 7BQ Tel: [phone]

National Radiological Protection Board, Chilton, Didcot, Oxon OX11

0RG Tel: [phone]

Here: qub.ac.uk/safety-reps/sr_we...

last published in 2002 - but the institutes must still exist even if they have moved in the meantime.

The last one must be able to provide you either with the information you need or be able to tell you where to get it.

[Mifford in reply to PMRpro]

Thank you so much for such an informative reply - I'll be sitting down with a cuppa to look through the website links this evening. Thank you x

[Hidden]

Hi Mifford,

I haven’t yet heard about anybody with lupus and light sensitivity using the HIVE bulbs that you’ve mentioned. Fingers crossed some people on here may have experiences they can share. Have you tried contacting the manufacturers to ask them whether they emit any UV and for more information about the spectrum of their lighting?

We wrote an article earlier this year which had loads of advice about light sensitivity in lupus. If you haven’t seen it yet, you may find it helpful - lupusuk.org.uk/coping-with-...

Currently the best advice for artificial lighting for people with light sensitivity is;

1. Choose LED light bulbs with a colour temperature of 2700k. These LED light bulbs are usually called Warm White and have a lower output of the blue light spectrum. (Avoid Cool White and ‘superbright’ which have higher blue emissions).

2. If possible choose a filament design. This will generally be stated on the packaging. (Usually a filament LED is comprised only of a glass bulb with a brass lamp holder, so avoid plastic based lamps or those with a plastic segment between the glass bulb and metal base). Although filament bulbs usually emit warmer light, you may find cold looking filament LEDs that are worse than some non-filament LEDs.

3. Cheap LED bulbs of all types are prone to flicker.

Let us know what you decide in the end and how you get on.

[Mifford in reply to Hidden]

Thanks Fabienne. The thing about colour temperatures completely confuses me I must admit .. the photo testing department told me I react up to 600nm which is as far as they test up to but I don't know whether that translates as 6000k or is a different way of recording the light spectrum altogether. I know the uv spectrum is at the lower end below 400 and reds and ambers are at the higher end.

Funnily enough my other half works for British gas so is going to see if he can find out more information from the people who know most about hive to see if they can talk to me to see if it could help and I'll be discussing it with Guy's at my next appointment in December. In theory the ability to adjust the light throughout the day to my particular needs at that moment should be a dream invention for me but who knows.

I knew that led was my next best option but didn't know about the filament thing so thank you - every little bit of extra knowledge proves unbelievably useful.

I'll update as my search for a solution continues

[Paul_Howard Partner LUPUS UK in reply to Mifford]

Hi Mifford ,

I've done a little bit of extra reading about the relationship between the wavelength (nm) and Kelvin (k). I don't have an excellent understanding of physics, so hopefully what I have found is correct;

"Nanometers refers to the wavelength of a single specific coloured light such as that emitted from a laser. Kelvins measure the colour temperature of a full spectrum light source.

Apparently there is a relationship between a colour temperature and the peak wavelength in its spectrum. This is called Wien's law.

Wavelength (nanometers) = 3,000,000 / Col temp (Kelvin).

So at 4,500K, the peak wavelength is 666nm (red) at 6,000K the peak wavelength is 500nm (bluish green) and at 7,500K the peak wavelength is 400nm (deep blue)

Outside these temperatures, the peak is outside the visible spectrum.

I every case, that's just the peak wavelength - all other wavelengths are present as well, in slightly lesser intensities, adding up to a more-or-less white result."

I have no idea if this helps you at all? Hopefully I haven't made things much more complicated! I think what you'll need to look at spectrum chart for the different lights and find those with lower levels of blue light. You can see some examples here - lupusuk.org.uk/eclipse/prod...

Let us know what you find out and what you decide.

[Mifford in reply to Paul_Howard]

I think my head is spinning but I will sit and work that out so thank you.

I found out a bit more about the hive lights today too .. they do produce a small amount of uv but due to the processes that take place in the bulb (can't remember what they called that bit) this is converted into white light and the amount of uv actually transmitted is almost undetectable. The lights are in 2700k warm light. That combined with the ability to dim these without flicker to an individual setting using the hive system is making them sound like it's a very possible solution for me. It's an expensive way of doing it as bulbs are £20 each and would need to buy the Hive hub so I'm going to look into it further but I'm keeping everything crossed.

And in my case as the main problem is my office if I can show that these are a good enough solution for now it's highly possible that Access To Work will help with the initial costs ... they've been absolutely amazing and helped significantly with the window film and funding my glasses for reducing migraines from the computer. I have no idea how I'd have coped financially without them to be honest as I don't think I could carry on working without the help.

[Gizmok9]

I have similar problems I've had to change all bulbs to warm led at work and at home. My Husband reduced the amount of bulbs too, it was floresent tubes which I find the worst, 16 down to 8 and now and no loss of light at work. Much better for my migraines. I Like the sound of your film for windows would help us too, I have sky lights that don't have blinds and can't be reached!! I hide from them some days. Even wear a hat!

Most of the time sun glasess help me cope and also have drivewear brown lenses.

My consultants not been much help. More interested if my skin reacts. I'm Interested that you have had tests.

Best I 've just found is a optician that thinks he can help, he's even noted my problem with stripes and patterns is a promlem! I've been fobbed of over the years as its part of migraines! Appointment not till 21st December so fingers crossed.

Ps LED HUT has a fab selection of led bulbs, all shapes. Just register as trade account they don't ask 😊 X

[Mifford in reply to Gizmok9]

Testing was with the specialist photosensitivity department at Guys but it took a long time to get someone to refer me and I pretty much had to do all the legwork myself to get the Rheumy to send me. I was getting really clearly visible rashes from artificial lighting and having major reactions due to full blown solar urticaria so that's why I was referred to get it confirmed or see if it was a lupus manifestation.

The window film was fitted by The Window Film company and is Madico Amber 81 but it really is orange. It was reasonably priced considering how far they had to travel to me to fit it and the fitters were really helpful as they were incredibly interested in my circumstances ... they'd never had to fit that tint themselves before and had only heard of it being used in scientific labs. They do other film as well though which might b of more use for other people.

[Nancyartperson]

I found this interesting as it is an awful problem for me too. Blue blocker glasses help me as does wearing a visor indoors. Please keep me advised. I live in sun bright Texas-Oklahoma, which is bad news!!

[Mifford in reply to Nancyartperson]

On the bright side (ironically) the window film I have is imported from an American firm so you might find it easier and cheaper to source if you need it. It's by a firm called Madico and is called Amber 81. It really is quite bright amber though!

[Mifford]

Hive had a special offer on today where I could get the hive hub and 3 light bulbs for £79.20 all in so as ridiculous as it is to spend that much on lighting I've decided to give it a try and will let everyone know how I get on. Good job we've just cleared out the loft and sold a load of stuff on eBay!

[PMRpro in reply to Mifford]

It's all cultural you know! £79 is under 100 euros. I wouldn't expect to get more than a fairly simple standard lamp for that here where I live in Italy. In fact, the 2 I have in the living room were 100 euros 10 years ago when we moved here...

[Mifford in reply to PMRpro]

I know ... if I was told I needed a specific light fitting that cost £15 I wouldn't think twice but £15 for a single lightbulb and my brain screams at me that it's too expensive. Never happens that way when I'm buying clothes though - I'd spend £15 on a top without thinking twice lol

[Paul_Howard Partner LUPUS UK in reply to Mifford]

Hi Mifford , that's great. We look forward to hearing how you get on with them.