Do you remember that time my tongue started to swell up on a long-haul flight? Well, it happened again. Only, this time I was on my way back from Austria. “Would you like anything to eat?” the air hostess politely asked as we departed Innsbruck for London Gatwick. Ordinarily, I’d decline but didn’t on this occasion.
I’ve previously written about the need to be prepared if you’re travelling with allergies or, in my case, suffer from bizarre reactions that cause your airway to close up. Usually, I’m well-organised but I’d been on a press trip with a jam-packed itinerary and ran out of time on the last day.
Unlike my companions, I couldn’t eat at the airport because every option contained a trigger food. And by the time I’d settled into my plane seat, I was absolutely famished. So, I did something I would never usually do while cruising thousands of feet above the ground – I bought a packet of crisps. I quickly scanned the ingredients list; potato, sunflower oil, and salt and figured I’d be safe.
Uncomfortable sensations in body
“I’ll be fine with this,” I smiled, before quickly working my way through the bag and drifting off into the land of nod. Shortly afterwards, I awoke with a start. “We’re circling because there was a bird strike involving another plane and the runway’s being cleared,” our friendly host explained.
Being an animal lover, I’d usually feel for the deceased flock in a situation like this but my mind was distracted by the uncomfortable sensations in my body. “I don’t feel right,” I blurted out as beads of sweat trickled down my forehead. “Oh no, in what way?” the PR replied. “My throat feels sticky. It’s hard to swallow.”
Now, our host was well versed in the trials and tribulations of my baffling condition. Fortunately, I’d only had one reaction on the three-day press trip; that wasn’t particularly nasty so she immediately knew what to do. “Let me see your tongue,” she demanded. Her eyes widened. “It’s enormous,” she screamed before running off to get more water from the back of the plane.
Airway affected every time
As some of you know, my peculiar tongue swelling and throat closing reactions first took hold 20 months ago and doctors remain perplexed as to why they occur. Histamine intolerance – the body’s inability to metabolise the chemical histamine found in certain foods– is one possible theory. Symptoms mimic an allergic reaction – in many people these present in the form of a rashes or itching – but my airway is affected every time, which means I must carry an emergency kit of antihistamines, steroids and adrenaline pens wherever I go.
Trigger foods include lemons, limes, oranges, mature cheese, Marmite, alcohol, anything aged or fermented. Oh, and vinegar, which is in everything – from condiments and pickles to salad dressing and makes eating out and buying lunch almost impossible. What’s more baffling is that my symptoms also occur when I get hot (which, incidentally also happened on the flight) or do any form of cardio, so I’m constantly walking on eggshells.
Yes, I was hungry on the plane but, with hindsight, I was immensely stupid buying those crisps. Vinegar may not have been listed as an ingredient, but the production belt at the factory could easily have been contaminated. According to my immunologist, antihistamines must be taken at the onset of a reaction to halt the swelling, which can become too difficult to control once set in yet I’d unwittingly wasted valuable time in the ten minutes I’d been asleep.
“Here, drink this,” the PR instructed as I scrambled for my meds. I shovelled the pills down my throat before being ushered off the plane. The reaction was pretty horrendous – my tongue remained swollen for three days, the medication wiped me out and I suffered from severe brain fog and writer’s block – not ideal for the day job.
Despite being super careful with my diet since – the reactions are now happening again almost EVERY DAY. This requires more antihistamine to control the swelling which – in itself creates a vicious circle – as it can inhibit production of the diamine oxidase (DAO) enzyme in the gut that’s responsible for breaking down the histamine in food.
Over the past year and eight months, I have deduced that certain foods, heat and exercise – even dancing – can set off a reaction but, astonishingly, nobody can explain why and my immunologist admits he has never seen anything like it in his life. He has now prescribed stronger daily antihistamine in the hope it will break the cycle of swelling, which he says is very unusual especially as it is always symmetrical.
I’m determined to try and carry on as normal but am equally desperate to raise awareness, find a reason and gain some sort of control. I’ll let you know how I get on but in the meantime, if you’re going through a similar experience or know someone who is, please do get in touch, share or comment on my post.
Someone somewhere must know the answer.