Labyrinthitis - A Friend for Life?

Isla - was 27 when she suffered it for the first time.

What can I say? Truly and honestly Labyrinthitis has changed my life in ways that I could not have ever imagined even in my wildest dreams. Not all of it bad in the long term so read on.

I could not imagine that a simple viral infection could turn my whole balance system and in turn my life, quite literally topsy-turvy. Hard to imagine but true.

It started in March 2001. After a week long cold that seemed like any other, I awoke to a loud and very over powering ringing noise in my left ear. I called the GP and was told it was tinnitus and should pass. It did thankfully just in time for me to travel to America on business. Just before leaving I had a few very brief intense dizzy spells, which at the time I put down to stress.

I got on the flight and then when I stepped off at the other end started feeling very nauseated. The following day I started to feel mildly strange, a little dizzy and just not quite right and I put it down to jet lag. That evening I went out for dinner in an extremely busy restaurant and as I sat talking was hit with a feeling that I was about to faint. I immediately lent forward and "bam" the room started violently spinning around and around. I sat up but it continued and much to my surprise I did not faint. I somehow managed to sit through the meal trying to be polite and then stood up to leave. As I tried to navigate my way out of the restaurant I found that I felt very odd walking and unsteady. I grabbed onto my husband's arm and promptly went home to bed.

I woke up the next morning convinced I would be better, but instead the room literally looked as if it was swinging from side to side very quickly - not spinning but still very much moving. I tentatively got out of bed and was very surprised to find that despite feeling the end of the world was definitely nigh, I could still stand and walk. So I walked to the bathroom and leant forward to splash my face when I got a horrendous feeling that my brain and head had lurched 50 feet down. I stepped back in fright and beat a hasty retreat to bed.

My husband was not really sympathetic thinking I was being over dramatic and went out for the day. I still kept thinking it would pass but frankly it did not and I stayed in bed counting the days until our return flight to the UK.

As I boarded the flight home I was convinced I was seriously ill but my thoughts were of getting home and then dealing with it. By the time I got off the plane in the UK I felt very unwell and had persistent feelings of motion in addition to the vertigo, I could no longer walk unaided and went straight to the doctor.

I was told and I quote “Dont worry this lasts about two weeks and you will be as good as new take these pills rest up and you will be over this soon”.

My relief was enormous but my symptoms did not seem to improve and if anything seemed completely disabling. I took to my bed and there I pretty much stayed for the best part of nine weeks.

I was incredibly dizzy in the head all the time, objects seemed to shift around all the time, any tiny motion I made felt very unnatural and horrendous and I lay down day after day waiting for it to pass. When after two weeks I felt no better, I managed to get an appointment with my own GP, she again confirmed Labyrinthitis and explained it was all coming from my inner ear.  I was surprised that the ear controls your balance, but relieved that’s all it was.

My own GP to be honest was stoic in her support and really helped me keep my sanity - she allowed to me to visit weekly. She  reassured me that despite feeling utterly dire it would pass, I would get better and “No” for the hundredth millionth time its not life threatening or a tumour!

The worst of the vertigo symptoms lasted for about four or five months. During this time I could not walk or stand without leaning on some one or the wall for support. Everything in my field of vision appeared to bounce, the ground felt as if it were in motion like being on a bouncy castle combined with an escalator. I very nauseated and spatially I was very disorientated. I felt like I was free falling through space with an intense feeling of dizziness in the head at all times. Rather worryingly for me these symptoms were still present even if I stayed very still. I could not watch even TV as the motion would make me crazily dizzy as would watching the kids play or run around. My life revolved around trying different vertigo drugs and staying as still as possible.

At this point I had no knowledge of compensation and the importance of trying to get back to a normal active routine as quickly as possible. Nor was I aware of the possible effects of taking vestibular suppressants over many months on the compensation process.

Six months into the ordeal I went to see the ENT who sent me for an MRI – which was clear and again he confirmed Labyrinthitis as the problem and said give it time, go away and you will get better soon.

By the end of the first year, I felt almost better, not cured but a good bit better and only symptomatic by the evening. I did still experience dizzy spells and would also have a resurgence of symptoms that would last a few weeks and then taper off again. But on the positive side I could work and look after the kids again.

However during my second year into recovery I got pregnant with my 3rd child and this seemed to set the symptoms off again to almost as bad as they were at the beginning of Labyrinthitis -  although no spinning vertigo. Being pregnant made me feel quite ill and sick and this in turn slowed me down and reduced my activity levels.

I was dumbfounded as to why I was feeling so dizzy and unwell and had not made this promised spontaneous recovery. I felt very low and isolated and trapped, as there seemed no quick solution or magic pill for recovery. Why was I the unlucky statistic failing to recover?

The dizziness made me feel incredibly guilty about not being able to manage the children properly or even cook meals. It changed core relationships with people, as I become more and more dependent on others.

How did my family and friends react? Well as you would expect my close family were very understanding in the initial stages of the illness. But like anything else it wears thin after years of a chronic problem and put simply the symptoms that we experience are unlike anything they can imagine so sympathy was there but limited.

Also I think that being chronically dizzy means (albeit not necessarily) turning down invitations out and becoming the boring dizzy friend so to speak.

This reaction by family and friends increased the isolation and frustration with it. Although I must say that my sister was a wealth of support and regularly took my kids back and forth to school and nursery and out to the park or just out of the house, which at points was impossible for me. She was always available to help and to be honest I could not have coped without her support.

My understanding of why people react they way they do towards dizzy people, came to me quite unexpectedly. During my trip to London I met Emma. Although we had been in regular contact we had yet to meet.

When I met Emma face to face, it came as a huge surprise to me, here was this woman who I knew felt horrendously dizzy and in her words “living in a warped world” and yet to me looked the picture of health.

I then could better understand people’s lack of empathy and dismissive attitudes. We don’t look ill, in many cases quite the contrary, it’s only something that we can feel in our heads and bodies. It’s not like an obvious broken leg or even a well understood mental illness. Luckily it’s something that the vast majority of people will never experience.

So what I have learned is that you need to muster a lot of inner strength to cope and I no longer bother to describe or discuss my dizziness with non-dizzies as they simply don’t understand and often say something more unhelpful than not.

The amount of times that I heard from well meaning people “Well my uncle/my friend had a problem with dizziness and initially the doctor said it was inner ear, when in actual fact it was anxiety and stress!”.

It's hugely frustrating if only they could live in permanent state of imbalance even for half an hour their attitudes would change.

What adds to the isolation is that no one else seems to have had the problem or if they had it was a quick three-week episode whereby they still managed to work and it passed without a thought. Again the implication being that, we want to be persistently dizzy and it must be all our heads. Well I suppose on one level they are right - it is in the head but more precisely the inner ear.

A turning point for my husband was accompanying me to London for the vestibular testing and diagnosis. He then completely understood the problem, why I felt the way I did and almost over night became extremely supportive and encouraging to me. He had always been supportive don’t get me wrong, but simply could not understand the disabling symptoms especially as I looked just fine.

The impact of vestibular dysfunction goes well beyond just you as the sufferer, you sort of fall into an abyss of searching for a cure or route out and many other aspects of your life fall by the way side.

I am normally a very busy organising type person who is endless running here or there and doing things. Being chronically dizzy reduced me to someone who was bed bound and very dependent, quite simply unable to do the simplest of tasks.

Walking which was once second nature has become something extremely unpleasant, producing horrendous feelings of motion in the ground, visual shifting, nausea and a horrid off balance sensation.

After three years of chronic symptoms, my ENT virtually threw his hands in the air and said he was no longer sure my problem was inner ear. He sent me onto a scientific audiologist who again failed to carry out any vestibular testing but managed to change my diagnosis to bi-lateral BPPV and performed several epley manoeuvres and still I was not magically cured.

I hit real rock bottom - I was getting dizzier and dizzier and felt permanently off balance and bouncy and surreal and extremely light headed. 

At this point I was so non-functioning that I decided I had to take matters into my own hands and I tracked down a Neurotologist in London and booked my referral appointment.

Finally I had the full range of vestibular tests and I got a diagnosis!

YES I had a vestibular problem. The tests showed that the bout of viral Labyrinthitis in 2001 had caused both mild hearing loss and inner ear dysfunction in my left ear.  The term used was a failure to fully compensate.

The diagnosis of bi-lateral BPPV was incorrect and I was hugely relieved and pleased to finally know what was wrong with me. I may have had a mild case of BPPV in my left ear caused by the virus but that was not the underlying problem causing my chronic symptoms.

It validated what I had long known my symptoms were not a form of anxiety or strange physiological disorder but due quite simply to asymmetry between my ears giving mixed signals to my brain.

I was also greatly reassured that I could achieve full recovery and this in itself was a real turning point in my own recovery.

I was given a full explanation of what was causing my symptoms. Then told that this is the start of the future to getting better and to help I would have to try and not dwell on the past few years and to look forward.

Also that to give my brain a chance to fully compensate I must move around as much as possible. Doing things consistently, little and often and gradually building it up over time. I was told to practise standing unsupported and do jobs around the house even if it feels unpleasant and try to move my head normally and look up and down as you would if you were dizzy free.

The physiotherapist gave me structured exercises (VRT) designed specifically to induce dizziness in an attempt to get the brain to habituate to the miss-match - resulting in a vast improvement in symptoms. Again this is very much "practice makes perfect" and perseverance seems key even over many months.

Cognitive Behavioural Therapy is very important too, as with any chronic disorder it’s very common to experience both depression and anxiety. I saw a CBT practioner who specialises in patients with balance problems and this helped me enormously. CBT helps you learn how to cope with the anxiety symptoms that are caused by the dizziness. It helps challenge negative thoughts and to develop a more positive outlook on your dizziness. I needed this as at times, I exhibited typical "avoidance behaviour" and was very fearful of going to certain places which made me more dizzy.

I have to say that over the past six months my symptoms are not there all night and day. In the past they were and I was house bound and unable to do basic tasks, even just standing was hard for me.

I have now resumed normal living - okay not every day is a great day but I would say I function any where between 90 – 99% most days. Whilst it isn’t perfect its fine and I can live with the symptoms at a level where by they do not dominate my day.

Getting better, frees the mind, you realise that your focus shifts from actively trying to recover onto the more interesting and even quite simple aspects of life. My priorities have changed greatly since getting almost better. Things that I once saw as completely boring are now enjoyable as I can do them again. The relief at being able to fulfil a normal role as mother and wife is enormous.

Bit by bit, I regained my confidence and start believing that with or without Labyrinthitis symptoms I can live and carry on. I learned that dizzy or not, I can still function and that nothing untoward happens to me.

I really want you to read this story and gain some comfort and hope.

I truly don’t believe that these symptoms are a life sentence. Getting better takes perseverance, the patience of a saint combined with good medical support and if possible the support of either a close family member or friend who will stand by you and try to understand.

I no longer feel like I am the unlucky statistic and that I am completely alone. I realise that there are many others out there in the same situation as me.

Just remember YOU are not alone and there is help out there.

UPDATE - 24th December 2004.

Isla hit the 95-100% mark earlier this year after having Labyrinthitis for 3 years. She feels normal most of the time with occasional "blips". Hooorrrray!!!!!!

UPDATE - 6th December 2005-present.

Isla remains at 100% pretty much all of the time - hurrah!

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