London - The first sign of a problem was when I started inexplicably keeling over to the left when cooking in the kitchen or talking to someone.
Then came the dizzy spells and problems with balance. I had difficulty walking, as if my feet weren’t quite in sync with my head, and I was covered in bruises from bashing into walls and doors.
There was also the earache. At the time I blamed it all on a nasty ear infection and thought the symptoms would eventually clear up on their own.
But they didn’t. And then along with the dizziness, my mind started to feel fuzzy. I’d always had a keen memory and could recall at least 100 phone numbers in my head. But I was forgetting people’s names - even those of my friends. I then started to forget words. After six months I finally went to my GP.
“Ear infections don’t last for months,” she said. “I think we both know this is a lot more serious than that. It sounds as if it could be a brain tumour or the start of multiple sclerosis.”
Shock rolled through my body in waves as I watched her scribble in my notes and tap some details into her computer.
“I suggest you have a brain scan, and I’ll refer you to a neurologist - but there is quite a long wait,” I heard her say as I stared speechless out of the window at the life going on outside, while it felt that mine had suddenly stopped. Outside, I burst into tears, not caring who saw me.
At home, obsessively Googling the symptoms of MS and brain tumours, I found that mine did seem to match those awful conditions. My husband Neil told me not to fear the worst. But I could see the worry in his eyes.
Realising the suspense was going to kill me if nothing else, I booked a private MRI scan.
Two weeks later, when the neurologist said there was no evidence of a brain tumour or MS, my relief was indescribable. But I was not convinced by his explanation that the symptoms were all down to stress.
“Sometimes we don’t know what causes things,” said the ear, nose and throat consultant at my local hospital eight months later.
Despite a range of tests, he, too, was none the wiser. “Just try to include some rest and relaxation in your life,” he said.
So I tried to believe there was nothing seriously wrong with me and spent the next five years trying to get used to living with a constant low-level dizziness.
My children found the fact I walked into door frames amusing rather than embarrassing; Neil affectionately said my “brain fog” was just me getting older.
I made adjustments and started writing down everything so I wouldn’t forget things. But then one morning this year I woke to find my symptoms had suddenly multiplied a hundredfold.
I felt as though I was blind drunk, with a horrible blurring, spinning sensation when I moved. Even when I was laying down, it felt as if the room was moving around me and the walls and floor were “breathing”.
I returned to my GP’s surgery - to a different doctor this time.
He examined my ears and eyes and listened as I described my latest flare-up. Finally the lightbulb moment came. “You have labyrinthitis,” he said.
This wasn’t stress or a tumour - it was a complication following an ear infection. The GP explained that the inner ear consists of a system - or labyrinth - of fluid-filled tubes, which plays a vital role in maintaining balance and posture by sensing the position and movement of the head and sending this information to the brain.
In labyrinthitis, this system becomes upset or damaged, as a result sending conflicting signals to the brain.
The main symptom is vertigo - a spell of extreme dizziness with a sensation as if the world is spinning around you, often accompanied by vomiting.
The exact cause of labyrinthitis is not yet known. It may be related to a viral infection, occasionally a bacterial infection or even a simple upper respiratory infection, such as the flu.
It can strike anyone at any age, but it is most common after 40 with women outnumbering men by two to one - though, again, no one knows why. “Apart from travel sickness tablets, there is nothing you can do except rest until it lessens,” my GP said, printing out an information sheet for me.
The condition usually lasts three to eight weeks, clearing up spontaneously. But, while labyrinthitis explained my nauseating dizziness, it didn’t account for my five years of constant balance problems and memory loss.
So to find out more I saw Dr Gerald Brookes, consultant neuro-otologist at the Harley Street ENT Clinic. After a series of high-tech tests, including a posturography test, where I was strapped into a harness and had to try to keep my balance on a moving floor, finally I had the answer - benign paroxysmal positional vertigo (BPPV).
Like labyrinthitis, this is an inner ear problem. Tiny crystals of calcium carbonate, found naturally in the ear, become dislodged and enter the labyrinth.
Normally, when you move your head, fluid moves around the inner ear triggering nerve messages to be sent to your brain.
“But in BPPV, the particles in the fluid are shaken up like a snow globe. As the debris fall, they land on and stimulate sensitive balance tissue,” said Dr Brookes.
Signals continue to be sent to your brain indicating movement, even when you are still. This gives the sensation of spinning. I was cheered immensely when the team at the clinic said my chronic short-term memory loss could be linked to my condition.
“The brain is having to work so hard to keep you balanced and upright that focus and memory are hugely affected,” says Dr Marousa Pavlou, the vestibular (dizziness) therapist at the Harley Street ENT Clinic.
The causes of BPPV include head injury or inner ear infection, though for half of cases there is no specific trigger. Labyrinthitis can often cause BPPV, and vice versa.
Dr Brookes’s guess was that a much earlier, but mild, attack of labyrinthitis had damaged my inner ear, causing the BPPV I’d had for years. The recent worsening of my problems was another attack of labyrinthitis on top of the BPPV.
Worryingly, like me, many patients live with conditions such as BPPV for years without knowing what’s wrong with them. (And without appreciating the risks of further problems, such as labyrinthitis).
“This is an area GPs know very little about,” says Dr Pavlou.
“We see patients who have been told they have MS or a brain tumour. Sometimes they are told it is just stress and they will just have to get on with it.”
How many like me have been affected in this way? Potentially hundreds of thousands - an estimated 36 percent of the population develop some kind of inner ear disorder at some point in their lives.
The good news is that in 50 percent of cases, BPPV gets better on its own. “The crystals make their way back to the correct part of the ear, although this can take weeks or months,” explains Dr Brookes.
If not, there is a form of treatment, a “lateral roll repositioning manoeuvre”. Here a specialist moves your head through a series of four positions to restore the crystals to their right place.
As well as having this done, I was given exercises to do at home, such as walking backwards and forwards while moving my head from side to side and trying to focus on a point in front of me.
Since I started the exercises a couple of months ago, the laybyrinthitis has gone completely, and I have high hopes that my BPPV symptoms will be vastly reduced.
Am I angry it’s taken so long to find the reason for my symptoms?
No, because BPPV is a condition that is still widely misunderstood. And it is a relief to know I didn’t have something far worse.
But I do wish I’d found out earlier. Now I’m just looking forward to being able to walk around without bumping into things. - Daily Mail