My name is Brandon, I am 34 and from Australia. This is my story about how ‘Light began looking at me’, and to the point that my mobile phone’s screen felt like a blowtorch on my face.
Likely Covid-19 Infection
In March 2020, I believe I was infected with Covid-19.
This was in Australia, and at a time when there were less than 100 confirmed cases in total.
I believe this was Covid-19, as an older friend of mine came around and visited me just as I started showing symptoms/ Within a week, both he and his wife ended up in hospital with breathing difficulties (he described it as a tap that would never turn off choking and suffocating him). They both tested Negative for all the common virus tests. This was a time when Australia was conserving Covid tests, only to be used on international arrivals only.
However, my infection with the virus was bad but as bad as any I’d had before. I definitely didn’t need a hospital. It was what followed in the months after that was strange.
I began having stroke-like episodes. There were times when I couldn’t speak, I began experiencing ‘Foot-drop’ episodes a few times a month, always on the left foot. My brain would go scrambly at times, and IBS stuff going on with gastrointestinal issues, joint pain, as well as fatigue. I’m sure there were other random things happening, I just forget now.
I suspected Long-Covid as soon as I had first heard of it. I never really felt like I had recovered.
Sun Cream Making Sunburn Worse
What also happened was a few months later I began to do morning market stalls on Sundays. I bought some Sun cream from Aldi. This stuff felt like it wasn’t working. It felt like the more I’d apply it, the less it would work, especially around my temple area. With this product, I began to feel like my skin was photosensitive and I must start investigating why.
June 2022 Update: I have since written a review on this Adli Ombra Sunscreen.
After a few preliminary searches, it didn’t take long to stumble across this review website of the Aldi sun cream. It was starting to make sense. This sun cream is horrific.
Depression From Being Separated From My Baby Son
Within a few months of no longer using the cream during Winter, Summer had come and it had all disappeared and gone. However, bringing the clock forward another 6 months, my wife and 9-month old baby had to go overseas, back to Japan to visit her family and show them our son. She was very homesick and depressed as a result of all the Covid travel restrictions. I was very supportive, and happy about her going with him.
What I didn’t expect was this to bring on depression with me also. Within 3 weeks I had gastritis very bad (a common symptom with the heartbroken apparently). I started having these photosensitive feelings on my face come back too, and a lot in my temple areas. but the right temple much more.
I would also notice that I would get very tired and even nearly pass out from driving around, being out of my home longer than an hour at a time.
Sun Allergy Becoming a Primary Concern Of Mine
I started to see the Doctor more about this light sensitivity more than the Gastritis I was dealing with, more than a ‘by the way’ comment I’d add to my visits with my G.P.
I told him that I could feel the bedroom light ‘looking at me.’
“I know this might sound like complete bullshit but this is 100% happening to me!”I said to him
“Are you sure you’re not making this up?! It’s all in your head?!’My Doctor said while laughing at me.
I laughed with him too.
How can I be upset with him? What proof do I have? Nothing.
Thankfully, I got a referral from him for a visit to the Dermatologist. My blood tests for Lupus that I had hounded him for over the last 18 months had always come back Negative.
At around this visit, I was put on an antibiotic, Erythromycin, for a boil that I developed on my scalp as a result of a skin check GP.
He cut out a Cyst to test it for cancer. (This Carbuncle, over the next few months, turned into something that needed 6 courses of antibiotics to get rid of and turned into and caused Celulitis Decalvans, but that’s another story.)
I started to burn up for hours after running just 5 meters out the front door, to check the mailbox. I would be exposed to outside my house, the real world, for what? 15 seconds max probably. I would go back in the house and feel like one of those microwaveable bean bag things. The things that help you apply warmth for a long period of time to a sore muscle. It would take hours for me to begin to feel anything like normal, and as Anna had written, only a fan would offer relief.
Over the preceding few months, I had shut every blind in my home without ever really realizing it.
Right Temple burning intensely
My right temple would start burning at night for some odd reason. This would happen as I felt the light look at me. Once it happened and I could feel the Nerve behind the eye have a dull pain to it, and even the vision in it plays up for a few seconds.
Also, I would experience this ‘narrow head, closed-in feeling of my face, as if my eyes are closer together or something. A strange feeling as if you’re face is very narrow and skinny all of a sudden. I demanded an ultrasound to rule out Temporal Arteritis, as that is all that was showing up in my Google searches. The Doctor again probably thought I was crazy, but what I was going through, cannot be found on any medical website or in my GP’s past experience.
The Ultrasound came back all normal. I still have a dull weird pain on the right side of my face, near my temple. The crazy right-eye nerve and pressure behind it, along with the narrow-head sensation has not returned though.
Skin Burning Intensifying
The next few days had gotten crazy. The balaclava that I had ordered from eBay had arrived, and this hectic hat I could get away with wearing in public as we had mask mandates here at the time.
The crazy hat and balaclava did next to nothing I discovered, and it was only my face that was burning up, I found it odd that my back, arms, and legs all could tolerate the sun pretty well. I was starting to be convinced that this Aldi sunscreen had wrecked the ability of my face to tolerate any sun exposure whatsoever.
Beginning to really feel like the only person on the planet who was going through this, the closest thing I could find on the internet at this stage to what I was experiencing was Porphyria, a group of disorders that result from a buildup of natural chemicals that produce porphyrin in your body. But the only thing I had in common with these people was the fact that light was painful and a sting. I didn’t get any visible burns or anything – Nothing at all.
The closest thing to what I could find was this study on sunlight triggering Migraines, as I was getting very tired and having headaches, after being out in the sun for long periods.
Well, now I could no longer tolerate nearly any light. I remember walking in the mall and being burnt by the light coming through the skylights. The same skylights that I had stood under for years and never felt anything abnormal, or even just during my last visit, a week earlier. Something was very wrong.
Breakthrough In My Research
For some reason I googled the phrase ‘woman allergic to light’ – I just had a feeling that there would have to have been someone out there who had dealt with this before. I clicked on this article in the New York Post – This Woman is Allergic to Light. I could not believe what I was reading. THIS WAS ME 100% I said to myself.
I remember skimming through the article, reading fast but trying to get to the ending, was there a cure? It didn’t say so. I started doing more searches on Anna Lyndsey. I found the News.com.au article I had read 6 years earlier. I thought it did sound familiar, maybe that is what prompted me to search for ‘woman allergic to light’ in the first place. I found Anna’s Website, https://annalyndsey.com/. Anna had written a book about her experience living with this unknown condition.
It sounded like she had finally been given a diagnosis and was feeling good again, a happy ending! I was really not well at this stage so I couldn’t really begin to research or understand her diagnosis, and I was also not entirely sure that what we had was even the same thing.
I remember being relieved to finally find another person on this planet who had gone through what I’ve been going through. The skin was burning, and no visible damage, but what had horrified me was that she was living in complete darkness, and being burnt by even lights – I had not experienced that (YET).
My Visit To The Dermatologist For Photosensitivity
A couple of days later was my appointment with my Dermatologist. I told him everything that was going on with me as best as I could before he predictably asked, ‘Are you an anxious person who suffers from anxiety? You’re a Googler. Stop Googling, I’m a trained professional in this field. This is my job’ – I liked his arrogance and confidence. I don’t mind people speaking like this, as they are making themselves accountable.
Photosensitive Seborrhoeic Dermatitis
Within a few minutes, he told me, “Get your phone out and Google this, ‘Photosensitive Seborrhoeic Dermatitis’.
This is what Anna was initially diagnosed with I thought to myself. ‘But where’s the Dermatitis?’ I asked him. My skin has always been pretty clear. He pointed to a few marks, but nothing I haven’t had forever.’
He was confident in his diagnosis, and I was too, I guess. I mean, everything seemed to add up with what very little was published about it, except for the skin damage which I didn’t think I have, nor did my GP, we both had a bit of a laugh about it, but I was happy enough with the diagnosis.
He gave me some Salicylic Acid to put on the area that was burning, but this just made it burn even more. I stopped after 2 days.
Burning Skin and Sweating from Light
A few days later, it was Halloween. I thought I’m going to have fun tonight – I’m going to go up to the Supermarket at night, and get a heap of Chocolate and candy, Put my Donald Trump mask on, dress up as Trump and hand out the lollies to all the kid’s Trick-or-Treating.
I made it to the Supermarket and within 2 minutes of being in there, I was being sunburnt by the big bright lights in there! I was being scorched alive! I was even sweating like a pig. By the time I made it out of there, I had nearly passed out and was not feeling well at all, probably 7 or 8 mins in total.
I got back to my car, and thought ‘Wow, what on earth was that? Were those lights burning me? Was I being burnt by the supermarket’s lights?! – That’s crazy!’
THE T.V & MY MOBILE PHONE BECAME FLAMETHROWERS
After getting home, I turned on the TV. Within 10 seconds my face felt on fire. This felt like a blow torch on my face! I turned the TV off in disbelief. It was around 7 pm now, dark and I crawled into bed. I was being burnt by a T.V?
I then grabbed my mobile to do some more research about this. BURN – My tiny Samsung Note was a flamethrower too! I couldn’t bear to look at the screen.
The next morning, when waking up, I felt burning all over my face, in my relatively dark room. I rang my friend to tell him that I needed him up here for the week to cook my food for me and help me with my work for at least a week until I figure out what is going on. No idea if he believed me or not, but he came up and helped me.
He went to the local hardware store, at my instructions, to buy Black thick Masking tape and thick black curtains from Spotlight. We made my bedroom as black as possible. Being in pitch-blackness was all I could tolerate.
“GOD BLESS ANNA LYNDSEY’S BLOG”
As I later said to my Dermatologist.
“She’s not a Doctor though, is she? It’s not a Medical website, is it? She’s just someone you found from Doctor Googling, who wrote a story on her ordeal, isn’t she?”
“Ha, Who cares what she is? You gave me Salicylic acid, her blog helped me find another person in the world that could relate to what I was experiencing!” – I like my Dermatologist. He’s a good man, but he’s dealing with an unknown beast here.
I reached out to Anna Lyndsey and made a time for a phone call with her. She called me and we swapped stories and tried working out how our sensitivity to light was similar to each other.
Anna said she never got any damaged skin markings either, but for her, it was all over her body. Whereas mine was just my face. What was interesting to her is when I described feeling warm like a heat pack for hours on end after exposure to light.
Anna started educating me further on MCAS and how that’s what it appears hers was. She told me to try going on a low-histamine diet. Anna talked about her experience trying antihistamines. I knew I had a few of those lying around from my seasonal Hayfever bouts.
The Cure? Definitely A Treatment
At the end of the phone call, I searched my house for a box of Telfast (Fexofenadine) as I would take them a few times a year. Most people have an old dusty packet of some type of Antihistamine laying around their house.
I broke a 60mg tablet into quarters and took a quarter. Within 3 minutes I started to get Tinnitus.
My ears were ringing, and a Migraine started to develop. This was odd. This had never happened before. My friend was on his laptop 5 or so meters away. It felt as if I could look at his screen and not feel like it was burning me.
I got my phone out and fired it up. I could handle the screen for more than 30 seconds. Light even started to look different, normal again…
The next morning, I woke up, took another quarter of a tablet, could go outside, and could not believe it. I was out in the light again. Just 12 hours from my call with Anna. A simple Antihistamine you could get from the supermarket or Service Station was a magic pill out of this unique and crazy hell I was in. It was around 5 days in total where I was living in full darkness.
I am now convinced that I have what Anna had, and it looks likely that it is MCAS causing the issues. I got two blood tests for it, but both so far have come back incredibly flawless. A DAO antihistamine enzyme test, and a Tryptase blood test.
Also when reading this story, another lady who reached out to Anna too, also describes it all coming to a peak for her while being on Antibiotics too. Her flavor was Azithromycin, mine was Erythromycin.
I later ended up having to take Erythromycin again, just 2 weeks later, and could handle it this time, as I was taking my antihistamine every few days when I could feel the burning come back, and it did, when taking it again, and also, Azithromycin and Doxycycline. However, the Azithromycin now for some reason is causing me Tinnitus, which I never had experienced from it before.
Anna also told me she had a bit of a flare after taking a dose of the AstraZeneca vaccine.
The other interesting thing is I recently tried the tiniest bit of a Claratyne pill, and it gave me the same Migraine and Tinnitus that I got exactly like the first time I took a Telfast (which never reacted the same way since for some reason) Haven’t tried a Claratyne pill since, to see if it gives the same effect, but don’t really want to try either.
Other strange things have happened since like, my veins becoming itchy when drinking alcohol and being ultra-sensitive to menthol heat rub, and Wood Lock oil.
I’ve also reintroduced Nizatidine (was taking this for the Gastritis) back into my life since, and it seems to burn me up also. Interesting given that it’s an antihistamine also. So what I put in my body is clearly affecting my body’s ability to tolerate light.
I still believe there could be some relation to my initial diagnosis of Photosensitive Dermatitis and Mast Cell Activation Syndrome as ‘Major Depression’ is listed as a risk factor with Seborrheic Dermatitis. Stress and Depression is also listed as a triggering factor for MCAS.
I have no idea if the suspected Long-Covid, The Aldi Sun cream, or the depression have anything to do with what made my experience what I did and still do, but something is for sure amiss.