Migraines..or something else? The never ending hunt for answers

In December 2018 I had been ill for about 19 months, but was starting to feel like I was really getting on top of things. I’d been eating paleo for 3 months and it seemed to be helping, my activity levels were increasing and I had barely had a sick day since my last big crash in July. Things were looking up.

Then, suddenly, I was struck down by my very first proper migraine (at least I thought that’s what it was – more on that later). The front of my head felt like it was in a vice and I could barely open my eyes, as I was so sensitive to light. I spent the first week pretty much in a dark room, unable to deal with light, noise or any level of activity. Over the next three weeks I went back and forwards to the GP, desperately trying every triptan they would prescribe and taking maximum doses of cocodamol and NSAIDs, but nothing helped. After two weeks they sent me to A&E for a CT scan, which was all clear, and my GP eventually prescribed amitriptyline which usually acts as a migraine preventative, to see if that helped.

Waiting for my CT scan. Thank goodness for my enormous hood – the lights in A&E were agony

Just before Christmas, about four weeks after it started, the pain and light sensitivity finally eased off enough for me to re-enter the world and enjoy some family time over the holidays but a couple of weeks into January it started again. A deep, tight, pain in the middle of my head and incredible sensitivity to light.

Again, triptans didn’t help and it was several weeks before I started coming out of it, only for it to restart again a week later. In some ways, these episodes were more debilitating than my previous fatigue crashes – at least with those I could watch endless movies and boxsets. Because of the light sensitivity, however, I couldn’t really tolerate a screen of any kind and even audio was difficult, so I was left with…lying in a dark room. Which, let me tell you, is bloody depressing.

My GP was a bit stumped so referred me to a neurologist who explained that I was potentially one of the unlucky ones who suffered from ‘transformed migraine’ which is basically where you have a migraine ALL the time. The only option seemed to be trying all the various preventative meds until I found one that helped, which could take years. Because of the sudden onset, however, he referred me for an MRI. This is where it gets a bit more interesting.

The MRI showed some kind of mass in my sphenoid sinus, which is directly behind the area where I get the pain. This could be a fungal infection and COULD account for my symptoms. Or maybe not, it could ‘just’ be migraines. But, now under the care of an ENT specialist, this could be investigated.

The infection is in the sphenoid sinus, the little red one

The ENT specialist confirmed the presence of an infection but was cautious about declaring this the source of my symptoms. However, given even a slight chance that dealing with the infection may put an end to my now daily pain, I’m willing to accept the risks associated with surgery (the only option to deal with this kind of infection) so I am booked in to have it removed in a couple of weeks. I am definitely nervous about the prospect of surgery and also the potential impact this may have on my other symptoms (my body’s reaction to general anaesthetic is of particular concern) but I am desperately hoping it helps. If it doesn’t, and it turns out to be a transformed migraine, at least I’ll know what I am dealing with and will commit to figuring out a way to deal that.

Pretty good representation of my current state

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