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Help I can’t breathe! My lifelong battle with non-allergic rhinitis

Updated: Aug 13, 2021

It happens every year, the month of May arrives and with it warmer weather, flowers bloom and atishoo, atishoo we all fall down. Well, not all of us. It is estimated that hay fever - also known as allergic rhinitis - effects 20% of the UK population. Sneezing, runny noses, itchy eyes . . . although sometimes dismissed as a minor ailment, hay fever can in fact be a pretty debilitating condition. Pity the poor folk, who on beautiful summer days, spend it suffering, forever blowing noses, forever sneezing, forever rubbing eyes.

If you thought that was bad enough, let me introduce you to hay fever’s much nastier cousin: perennial rhinitis. While the hay fever sufferer’s symptoms present on warm, summer days and can to some extent be predicted and therefore minimised, imagine a condition which continues all year round and is potentially triggered by just about anything and everything: changes in room temperature, changes in air pressure/weather, spicy food, cold food, hot drinks, cold drinks, alcohol, cigarette smoke, dust, pollen, grass, sand, wood shavings, polish, perfume, shaving foam, dogs, cats, rabbits, horses, guinea pigs and just about everything else inside Noah’s Ark . . .

Perennial rhinitis (aka vasomotor rhinitis) has just a single symptom: blocked nose. So, blow it? If only! The major difference between the allergic runny nose and the non-allergic blocked nose, is that the latter is ‘dry.’ Mucus is not produced and as such the nose cannot be blown and thus relief cannot be obtained. Yup, it’s a pretty bloody awful affliction to have and one I wouldn’t wish upon my worst enemy.

Until my mid-twenties I’d never heard of rhinitis – allergic or otherwise. Save for a few classmates at primary school who seemed to suffer from runny noses, I was completely ignorant about these conditions. Rhino (nose) and itis (inflammation). Never heard of it – why would I?

And then during my university days I moved into a basement flat. But this wasn’t just any old basement flat, it was damp, musty basement. I could smell the mould from outside. No sooner had I moved into this grim abode (windowless bathroom and kitchen) than I planned to move straight out again. The dinginess I could cope with, but not the dampness. Three months later I had a new flat. Bright sunlight flooded through my new place making the memory of my previous flat seem even grimmer.

A close escape! Not quite. For towards the end of my stay in this subterranean gaol I had started to develop what I though was a stubborn cold. Rather, my nose seemed to be blocked more often than not. Blocked nasal passages during the day are bad enough, but it’s the nights when the true terrors would begin. Almost every night it would happen. The day’s distractions over and the darkness waiting, it is during this period of the day that I would become not only aware of my condition but acutely aware of it to such an extent I began to dread going to bed.

Imagine one of your nostrils is permanently blocked, but no amount of blowing will change that fact; the only relief would come in turning over all night from left to right and back again. Performing this manoeuvre meant the blockage would move from the higher to lower nostril cavity like an egg-timer only much, much slower.

Alas, every night it happened, that feeling of a balloon being inflated inside my nose. I started to lose sleep. I would lie awake, staring into the void, appealing to whatever lay out there in the darkness (God, I assume) to make this torture stop. Please make it stop. My university studies suffered. I thought I was losing my mind. Checking medical reference books, the picture looked even bleaker: plenty of advice for allergic rhinitis, but for the vasomotor variety? Not a lot.

When the condition did not clear up after a few months in my new place I sought the advice of my doctor. I’d been trying all sorts of over-the-counter decongestants with little success. He duly diagnosed me with ‘rhinitis.’ It was the bit that he added next which really scared me: ‘perennial’ – as in all year round, as in for ever . . .

So began a couple of years of (mis)adventures with cortico-steroids – nasal sprays to you and I. One was called Flixonase. I would have a couple of puffs of this stuff every morning into each nostril. But even now, all these years later, I can’t truly say it actually worked in any meaningful way. Sometimes I thought it even exacerbated my problem and I became wary of it. Consequently, the sleepless nights continued. I was becoming more and more agitated – desperate in fact. How could I go on like this knowing that every night (and most days) I would be plagued by this affliction?

I wondered what I had done to deserve it. Was it some kind of punishment? At that time, it seemed like the only way to rationalise things. I found myself thinking how much I would love to trade this condition for any other condition: earache, headaches . . . any kind of ache provided my rhinitis would just disappear and I could once again breathe freely.

Finally in 1998, in utter desperation I made an appointment with a private Ear, Nose and Throat specialist (ENT). ‘Nasty. Very, very nasty.’ The doctor was shining a little torch into my nose, assessing the condition of the mucosal lining.

‘It’s extremely inflamed,’ he said removing the torch. ‘I can only imagine how hellish life must be for you. It’s not often I see a patient with that degree of inflammation.’

When he told me not to worry, that there was something that could be done, I dared to hope.

‘Inside the nose are these little bony structures - turbinates,’ he explained. ‘They become inflamed and swollen when you get a cold or rhinitis. We can ‘trim’ them down so they don’t cause obstruction to the flow of air.’

Upon hearing this news I almost wept for joy. I had been in a dark tunnel for the past three years exhibiting all the classic signs of depression – joyless, listless, anxious - and now this kindly surgeon had promised me some light.

The operation went very well. Within a few days I could take off the bandages and breathe again! I was ecstatic. I had forgotten what a simple act it was to just breathe. No longer did I toss and turn all night; nor did I wander around the house in the small hours unable to sleep and desperately trying to tire myself so that I might sleep upon my head touching the pillow. Life went back to what it should have been. Until a couple of years ago . . .

We were having a short holiday in our motorhome on the Lancashire coast when I awoke one night in a panic: I felt like I was suffocating. I could hardly breathe. It was a feeling I had not experienced for over two decades. For the first time in over twenty years, I remembered something the surgeon had said, words to the effect that the procedure was not a cure and that turbinates invariably grow back

And they had. Oh, how they had.

Just as predicted, in November 2019 my rhinitis had returned. At first it was intermittent. I might have the odd uncomfortable night. However, through 2020 these periods became prolonged – lasting for weeks. I assumed the turbinates were growing larger. It was a thought that started to haunt my days and nights.

Two decades after my ‘cure’ I found myself sitting in front of a Hungarian ENT specialist. ‘We don’t really believe in interventions for rhinitis nowadays,’ he told me. ‘It’s managed by drugs.'

‘Nasal sprays?’

‘Yes,’ he replied noting the concern in my voice. ‘But these are a new generation of nasal sprays.’

I was back to square one. Summer 2020 was turning into a nightmare. I had started to sit up into the small hours afraid once more to go to bed. The solution seemed obvious: nasal sprays, but I remembered all too clearly the ‘rebound’ effect I had experienced from such drugs and was holding back.

One day I decided to search for the Dr who had conducted the turbinate operation. Would he still be practising? To my delight he was still acting as an ENT consultant – and at the same hospital where the procedure had been carried out. I wasted not time in making an appointment.

Déjà vu! A little greyer round the temples – him and I – from across the desk in the consulting room he gave me a quizzical look. ‘Have we met before?’

Much of what we discussed followed the same script from 1998. That Flixonase has been withdrawn from the market because it apparently seeped into the bloodstream came as a shock: my instincts had been correct. I was more than a little worried to learn that following a paper by an academic, the consensus nowadays is indeed against surgical intervention for cases of non-allergic rhinitis. Relief followed though when I detected it was a consensus he did not necessarily agree with – nor I. In fact, I don’t give a stuff what the ’experts’ think. Surgery bestowed decades of relief after three years of Hell. I knew exactly what I wanted thank-you very much.

But there’s a snag. According to my consultant there are some 250,000 turbinate operations performed each year! At least there used to be prior to the effective closure of the NHS during 2020.

‘With 14 million on the NHS waiting list,’ he informed me gravely, ‘many of whom are waiting for cancer treatment, the chances of getting none-essential procedures are not very good. In fact, you will likely be on the waiting list for several years . . .’

So, there’s only one option left: go private. God know how much that is going to cost. I forked out £185 just to speak to the consultant for 20 precious minutes. But I can’t see any other way out of this. With the attacks becoming more frequent and more prolonged I stand at the edge of a very dark precipice.

With the NHS operating on a skeleton basis, (forgive the pun) there must be thousands of people forced into the same dilemma as myself: pay for treatment or suffer in silence. I’m afraid I’m no stoic. And so, next week, I will present my self to my bank manager and pray that he/she looks kindly upon my woes. Fingers crossed.