An Australian Experience

I’m delighted to host another guest post, this time from Brandon in Australia. He had very similar burning symptoms, like me, with no visible sign.

My name is Brandon Green. I am 34, male and from Brisbane, Queensland, Australia. I was very fortunate in finding Anna’s website right when I needed to in late 2021. For months my face was beginning to burn more and more after going out for a drive, and when heading into town for work. It was driving me nuts trying to work out what was going on.  I reckon I must have bugged the doctors for three blood tests checking for Lupus in the space of 12 months. Every time, my inflammation markers and Lupus tests would come back negative. Incredibly perfect, in fact.

What was interesting was that I was also put on antibiotics (Erythromycin) during this time, because of a boil on my scalp that developed as a result of a skin doctor cutting out a cyst.  In hindsight, and after coming off the Erythromycin, it was the antibiotics that exacerbated my sensitivity to light, when it all became as serious as it ever did, to the point where the TV, my computer and even my mobile phone felt like flame throwers on my face!

(Anna has already had someone make contact her with a similar story regarding what happened to her while on Azithromycin.)

It all came to a head one day when I was at the shops, being uncharacteristically burnt by light through the shopping mall’s sky-light that would never normally burn me.

After having googled my symptoms for months I somehow had this sense I should search, ‘Girl allergic to light’. I was hoping for a story just like I found – Anna’s.

I could not believe what I was reading. I could relate to nearly everything Anna had ever documented except for the ‘living in the dark’ part – sounded scary. Also, the ‘being burnt by artificial light’ was unrelatable as well. I got in contact with Anna and we agreed to a phone call. I had so many questions for her. The phone call was scheduled in for a few days’ time. By the time we had the phone call, I too was living in the dark! At this stage, I was eagerly waiting for the phone to call. Lyndsey and I chatted for a good while. We shared experiences and swapped stories.

One odd thing that we both had in common was the fact that we both felt like we retained warmth and heat for a few hours after an encounter with light – similar to a microwaveable heat pack. Weird stuff.

During the phone call Anna talked about her experiences with antihistamine tablets and I decided to see if they would help me. I scrounged around my medical drawer and found a few Telfast pills (60mg Fexofenadine). I reckon I broke one into quarters, took a quarter, hoping it wouldn’t make things worse.

Within about 3 minutes I started having a migraine, and my ears began to ring. I don’t ever randomly get tinnitus – something was happening.

Within a further 10 minutes from the migraine onset, I could now handle being in front of my tiny phone, and even the T.V.

Wow. An antihistamine cured me? I have Mast Cell Activation Syndrome too?

The next morning I woke up and took another quarter of a 60mg tablet (What’s that – like 15mg?  They make these in 180s! No idea how so little was so effective.)

I took myself out for a celebration lunch. It was quite an experience, after being locked up for nearly 5 days, living in the pitch-dark!

I have since gotten blood tests for Tryptase & DAO – but both have come back negative for any issue.

I still feel burning when I’m out in the sun for long periods at a time. I also feel the Fexofenadine being less effective than it was initially. I have never had the migraine experience with it again either.  I continue in my search to find out what really is going on with me, and if I have any news will keep Anna updated.

If you’d like to read more about my story with light-allergy and Mast Cell Activation Syndrome, you can here.

Lastly, I’d like to thank Anna for her help when I needed it the most.