I have been photosensitive for about three years now but this year I seem to be struggling with quite intense eye pain and subsequent headache (around the forehead) when outside. The headache goes upon going into deep shade or into the house. I do however, find myself squinting even in the home.
I do wear F50, F50 sunhat and sunglasses and retreat during high UV periods of the day.
Does anyone else suffer from this? If so have you found a solution?
I am going to purchase some wrap around sunglasses with a darker lens to reduce any glare beyond that I am wondering if this is a symptom of my condition worsening alongside my newish red ( small capillary breakage) nailfolds. Ain't life grand!!
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RosieA
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Thank you. I have been blessed by not being a headache sufferer. It goes quite quickly when I get out of the sun but I take your point about intense light being a trigger.
Do you know anything about capillaries, red nail folds implications? They have just developed after last post vaccination flare (5 months of awful symptoms and in hindsight suspected pericarditis. How are you doing?
I am not familiar with the capillaries and nail fold issues other than rheumatologists have an instrument with which they look at these in the finger tips. I remember having that done and my rheumatologist said it was good that I didn’t have “ … “. Definitely bring this up with your rheumatologist.
Migraines don’t have to involve headaches. I am on a lot of migraine prevention and I get everything but headaches. Swishes, aura from sun light, visual disturbances. Think of migraine as a neurological event in the brain, not a headache. I wonder if the light trigger occurs in normal people or is considered part of the migraine continuum.
Do you have any of the APS antibodies? They are pretty sure lupus patients with these antibodies have more migraines.
Will see what I can dig up. I don’t know if autoimmune photosensitivity and migraine photosensitivity are related. At least with me, they have talked about them as separate. Crazy stuff, right?!
Thank you, your description makes sense as my vision does get blurry. Ugh! another symptom, it's been a bad year!
Re nailfolds. The consultant noticed them ( I hadn't as was washed out with pain and repeated malar rashes) and wondered if similar micro bleeding could be the reason for ferritin deficiency, despite three months of treatment, levels went from 12 to 23. Better but not great. I will be raising what this means with her when next we meet but sadly that's not for a couple of months. I didn't at the time as we were busy looking at options re meds. I have gone back up to 400mg Hydroxy but ideal dose would be 300mg.
I have read about how they screen the type of damage to the capilliaries - especially in systemic sclerosis but beyond that it all seems a bit vague. I don't honestly know if I have had APS antibodies tested. I can access my GP test results but not the hospitals.
Thanks for taking the time to respond and hope all is as well as can be. x
Wrap around glasses that are very dark will help. Telling your Dr may be important too as you may get medicine for migraines. I’m terribly photosensitive from time on a computer device to overhead lighting. I reduce screen time and close shutters for the day. I have a collection of several pairs so it makes it fun. Photosensitivity to me seems more like the fly we swat away of symptoms. My organs are still working for me😊 MM
Thank you. I am seeing the opticians on Monday and know they sell some good wrap arounds so will be getting some. I will add this new symptom to my list for things to discuss with the consultant at my next appointment, Glad all organs are still working! x
Hi Rosie ,Yes , do get darker shade of lens and also wear a brim hat to help prevent the light getting in to your eyes . It will help .
Also , contact your GP about meds or your eye specialist/or opticians if you are seeing one to re check your eye if you are getting that pain in your eye. Whilst it may be from your migraines from the photosensitivity it can also be something else. Just get it checked out .
Thank you, I am seeing the optician next week anyway, just to reassure myself about retinal health and will mention it to her. Glasses are on my list and will collect then when I visit with them. I will also chat it through with the Dr when I see them. I have a hat with a rim on but sadly washed and then shrank my other one so that's also on my list. xx
Wow, Rosie, looks like lupus causes both eye sensitivity to light plus increased migraines that can be triggered by light.
I have no idea how this gets sorted out. You are doing the right thing by protecting your eyes as much as possible from light. Make note of any new neurological symptoms.
You do sound very photosensitive from sunlight even what comes through glass. That is rough.
Thank you. Seeing the optician tomorrow whom I trust and who knows the hospital opticians I gather. I am concerned about the level of HYD I am on, it's helping disease activity but is more than I should be taking. New sunglasses for me.
I loath the photosensitive aspect of this disease, it is very limiting and potentially socially isolating. Friends understand it and are very accommodating but it does restrict many things at this time of the year. Our old cottage has old agricultural grade glass, all wobbly and thin, so it does not offer any protection but we have shutters which I can close. We put a UV film on the car windows - fantastic cuts out 99% but you can only install that on modern windows. We really don't want to rip out our old windows, they help the house to breath! Nothing about this disease is simple. x
There are still days in the summer when I want to cry with sun block that goes every inch of exposed skin - the special lip and eyelid cream. It does feel like a constant threat. And there is a real threat.
What you experience with those indoor rays must be dreadful. You cannot even feel safe inside your home.
Yes, don’t take out the windows yet, Maybe. There is a solution,
I feel so sad got you. You understandingly sound very discouraged. The optician may be able to shed some light. XxK
Sadly, optician not overly helpful but have bought some Maui Jims - expensive but I gather they are some of the best sunglasses. Sun block on lips! I bought some but the taste!!!! Massive backlog in Rheumatology so have to wait 2 months for next appointment. Have had heart monitor on for 6 days and guess.... yep, no flare so no pounding heart to go with inability to breath through nose and malar rash. Will be pleased to remove it tomorrow as the connectors are hurting my ribs! I'm getting like Queen Victoria - overly in love with exclamation marks!! x
Sorry for late reply but don't seem to be getting alerts from Health Unlocked - will investigate.
You are going through a lot, Rosie. I know what you mean about the lip sunscreen. Most have an awful taste but I did finally found one that doesn’t taste like a landfill.
Even if there isn’t a clear issue that shows up on your heart test, maybe they will give you a beta blocker for when you experience the palpitations. I take it for for so many reasons I can’t remember the original one. And my neurologist pretty much says if I need it for palpitations (whatever has caused it) take more. If a glass of wine gives me palpitations, I take an extra. 😂
You may have severe photosensitivity and react to UVA and UVB. I only react to the sun length. But the hat with the veil has been life changing for me, especially in direct sunlight. You may need this. Your rash means your disease is active. Sunscreen and regular hat don’t cut it for some of us. I have demonstrated that. The rays bounce off water and concrete.
I have some new sun products for swimming. Hoping they work. I scare the kids with the full head cover.
Have they talked about methotrexate for you? You have inflammatory arthritis so just wondering.
Summers are indeed hard and as you say UV does bounce of surfaces, more than many appreciate.
I have tried Methotrexate - 9 months but it took away 50% of my life with the most overwhelming fatigue as a side effect, so we have dismissed it. They are talking about trying Azathioprine with Hydroxychloroquine and have had the relevant enzyme test to check that I can take it. It would at least allow me to reduce the HYD to the new recommended level which at present I am exceeding.
Glad you have found a tasty lip cover! I admire that you are going swimming, is this outside? Sea or pool? We are swimming over here with all the rain. x
Cloresenence is the latest lip protection I found but it is more of a gloss. I think it was Clarins that I always liked but not seeing it. Will keep looking.
I just starting swimming at my gym pool. It is small and indoors. Trying not to have a repeat of last summer. I become like a prisoner in my apartment with the sun and heat sensitivity. It is a vicious cycle. Don’t get out, don’t exercise, order in the worst food myself. Doctors are adamant that I take off the weight. It has caused blood pressure to go, A1C to climb, and triglycerides to increase.
Hope the 🏊🏼♀️ gets me in better shape. It is a challenge for us. I remember you like to swim in the ocean, right?
You have been through the mill with this. I am seeing the optician tomorrow more for reassurance than concern. I suspect that my symptoms are just down to fatigue and a worsening of the photosensitivity. I am sure you have tried Google scholar to see if they have articles about lupus headaches. It is without doubt so very complicated. Thank you are always for your response. x
Hi Rosie, I've been going through very much the same as you! I've been getting dreadful migraines, which go across one eye recently and going to discuss with my rheumatologist next week. I also have photosensitivity issues, but haven't noticed a significant connection between that and headaches. I get rashes sometimes and a malar rash, but mostly the sun just absolutely drains me of all energy. I've recently worked out that wearing my sunglasses the entire time I'm out the house helps a little (even when indoors, as some indoor lighting also makes me feel really unwell). I also try to top up my suncream more often when I'm out.
I too have nailfold haemorrhages and had a nailfold capillaroscopy last year. They could see dilated capillaries and haemorrhages, but I don't think they noticed a specific pattern. Currently I have a diagnosis of UCTD, but it's looking more like Lupus than systemic sclerosis. Have you been tested for any Antiphospholipid antibodies, as they can be connected to migraines? I think one of mine has come back positive, but haven't discussed with the rheumatologist yet. My ferritin is always right at the low end of normal - it's never been brought up as an issue, but now wondering if it is!
I have Lupus Lite UCTD. I'm not sure if my headache is a migraine as it disappears soon after I'm out of the sun. I get malar rashes after too much sun exposure. Five days in Cornwall in April led to five days of malar rashes, breathing issues and some raised heart rate and I did all I could to mitigate against too much exposure. The sun certainly drains me of energy too.
Interesting about the nailfolds. Did they tell you what it implicated in terms of disease course or are they just looking for specific patterns. Sounds like you have much to discuss with your Dr. I was meant to be seen next month but now have to wait an extra month. Seemingly, they have an enormous backlog so I am lucky to get squeezed in. I think I only did as we are waiting cardiology results. My ferritin was 12. What is yours? I have now been on iron tablets from the Dr for 5 months as after 3 months it only went up to 23. YuK! Oh, the deep, deep joys. Off to opticians this morning, so let's see if any advance in understanding.
I'm so sorry for the late reply, I must have missed this reply at the time!
They didn't say an awful lot about the nailfolds, just that they were abnormal and that it was a sign of connective tissue disease. The specific pattern or prognosis wasn't mentioned. She said she could already see them before she used the scope/camera they have, which was funny because the previous rheumatologist a couple of months before said it was nothing 🙄 They said they only really use it as a diagnostic thing and not monitoring, but I don't know if that's actually correct. I've been on Hydroxychloroquine and Tadalafil for 6 months, but still get the haemorrhages. I couldn't find much information about nailfolds and prognosis myself, but I was also interested to know if it was a sign of anything.
I haven't had my ferritin tested for over a year, but it was 23 last time. I can see a list of past results and it looks like it's been gradually coming down over the years. My zinc is always low, no matter the strength of supplement they give me, but no idea why. No one really seems to be that interested beyond prescribing supplements for a couple of months.
Interesting, thank you. My consultant did wonder if the microvascular 'leakage' could also be happening in my tummy and hence the low ferritin. I will ask again when I see her. I am about to finish the last 3 months of iron tablets from the Dr so will ask for another ferritin check to see where we are. They are loathsome to take.
Seems like we might be on a similar journey on this one!
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