Labyrinthitis: my story, by Colin Back

It was October 2008 and I had been at work all day in the office in front of a computer screen. Clearing things away to go home, I was sitting in a typical office chair on wheels, and I spun round in the chair to put something into the waste bin. As I turned away from the bin again, my head felt as though I had just got off the Waltzers at the fun fair. Then the room I was in began to move from left to right repeatedly in my arc of vision, very quickly indeed.

Ménière’s disease?

I felt awful and disorientated and ended up on all fours on the floor. My vision disorder continued for at least 30 minutes and I could not concentrate on anything at all. Fortunately I had colleagues in the office who took me to the hospital.

I had to wait for 2 hours to see a doctor. He at once said he thought it was a condition called Ménière’s disease, and gave me an injection to calm the vision distortion. He advised me to see my GP in the morning, which I did.

My GP examined my ears, my eyes and my neck, and took some blood. She also prescribed me Bethahistine Dihydrochloride 3 x 16mg a day.

More attacks

I had two more episodic attacks before the medication kicked in. In neither of these subsequent attacks did the room move from left to right; instead it moved in slow clockwise circles which I found to make me feel worse, and on both of these occasions I was vomiting into a waste bin in front of colleagues in my office.

While waiting for an appointment to see an Ear Nose and Throat (ENT) consultant (through a clerical error I did not see him for 9 months), I was averaging 2 attacks per week, some worse than others. They occurred usually around lunchtime or at 6pm and I wondered if it there was a link to my meal times.

I watched what food I ate and did not repeat meals that I had eaten before my attacks. It became all-consuming in my life. During this 9 month period, my hearing in my left ear began to deteriorate and I had the onset of Tinnitus too.

Tests and investigations

At last I saw the ENT consultant. He gave me a hearing test and asked for blood samples again, testing for Lipids. I was also sent for an MRI scan.

Some 3 months later I saw the consultant again, armed with all my results. I was hoping for a diagnosis, but I was disappointed to be told that I needed further tests - another 2 month delay.

Two months later and with my bi-weekly attacks continuing, I was beginning to recognise at least 30 minutes beforehand when they would happen.

The next set of tests tested my eye - Electronystagmography (ENG) or Videonytagmography (VNG). In a darkened room I had to follow a red dot wearing swimming goggles with cameras looking at my eyes. It was found that my left eye is a split second slower in reacting to movement; however, this was not the cause of my dizziness.

The next test I undertook was the Caloric Test. It involved lying flat on my back and having hot and cold air blown into my ears to try and induce a dizzy attack. The hot air made me feel slightly uncomfortable but not dizzy.

Tympanometry and Acoustic Reflex Tests followed; these entailed testing the amount of air pressure my ears could take.

Back to the consultant

2 months later I went back to my ENT consultant for a diagnosis!

My consultant said to me that he thought I had contracted a Viral Labyrinthitis, but that it had passed now. Despite my protestations he was confident that this was my problem. He told me to stop taking the Bethahistine. I did as he asked and within a week to ten days the attacks came back with a vengeance.

Avoiding social gatherings

I returned to my GP as my confidence had taken a severe knock. I recall sitting outside a busy coffee shop watching the shoppers stroll by; I felt the onset of an attack and I remained sitting hoping it would pass. I thought I was going to be ill so I tried to stand to walk 10 metres to an alleyway to get out of view of the shoppers.

As I tried to walk my gait was very unsteady and I fell over. I looked up and saw a mother move her two children around me, saying, "That is what happens when people drink too much.”

I was so embarrassed. I found myself avoiding social gatherings, even shopping.

Labyrinthitis

My GP diagnosed Uncompensated Labyrinthitis, saying that the condition will burn itself out... I am still waiting now (July 2010).

I have joined a support group for people with Labyrinthitis on Facebook. I have learnt so much from the group, which is made up of fellow sufferers. The main thing to do is to ask for an appointment to see a Neuro-otologist (a doctor who specialises in the diagnosis and treatment of people with hearing and balance problems, and eye movement disorders) at the earliest opportunity.

It seems there are so many things that can affect our balance and I do not personally believe that the ENT consultant has enough specialist knowledge in that area, whereas the Neuro-otologist does.

At time of writing (July 2010) I have a 72% hearing loss and tinnitus 24/7 in my left ear. I am back on my medication, the attacks seem to be fairly under control now my head feels as though it is fuzzy most of the time, my eyes sometime feel as though they are catching up with my head movements and I have a feeling that my brain is a sponge being squeezed.
I am waiting for an appointment with a Neuro-otologist.

Further information

If you have any questions about labyrinthitis, dizziness or any neurological topic, call the Brain and Spine Helpline on 0808 808 1000 or email helpline@brainandspine.org.uk.

You may also find these links useful: