A Warped World

By Emma (written over 15 years ago - she first suffered 20 years ago when she was 23)

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Our vision, muscles and inner ear are responsible for keeping us upright and balanced. When working normally, we don't think twice about this mechanism, often referred to as our sixth sense. We are able to move around without worrying and the only time we may notice our balance is if we go on a rollercoaster at a fair and experience momentary dizziness and spinning when we step off. I felt this sensation one morning in October 2002 upon waking. But I hadn't been anywhere near a rollercoaster or a fair.

 

 

 

 

 

 

 

 

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It was a most peculiar feeling, far worse than a funfair ride, as well as a dizzy feeling in the head, I felt vaguely drunk and the world seemed very surreal, as if I was looking at it through lenses which were not right for my eyes. I reassured myself, sure it was just a brief virus, but I was worried when it persisted and seemed to get worse. I remember going to a restaurant with friends and feeling completely disconnected, the dizziness was like nothing I'd ever experienced before - my only recognition of dizziness was if I hadn't eaten enough or the lightheadiness you get with a cold. But this was different. It wasn't lightheadiness. I almost felt half blind, especially when walking in the dark, as if I was in a strange bubble and wasn't really on earth.

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After about 10 days, I panicked. I went to the doctor as the sensation had got worse and any movement of my head made me incredibly dizzy, as if there was something rolling around in my brain. My eyes felt stiff and were unable to focus properly. I felt really drunk and unsteady. I also had blocked ears and popping - like the feeling you get when you have a cold though I wasn't congested. My GP announced I had Labyrinthitis, an infection of the inner ear and that it may take a little time, but "by Christmas you will have forgotten all about it". I felt reassured.

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At the time, I was doing an intensive University course so keeping up with this was difficult. As well as 24/7 dizziness, my stamina was low and I felt very tired. I was also restricted in what I could do as the dizziness made activities like shopping unbearable. Crowds seemed to make it worse and people moving around made me feel sick to the stomach. It was like I had 3D glasses on but was unable to take them off. Darkness was now even more uncomfortable too - it seemed to make the dizziness so much worse and walking was a real struggle. I managed to carry on with my course and by Christmas, went to see an ENT specialist.

He did tests and ruled out Meniere's Disease. He also announced I had Labyrinthitis and that damage had been done to the inner ear by a virus and that this damage was permanent but that my brain would compensate for the injury.

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He also proposed that I may have mild Eustacian Tube Dysfunction as a result of the virus scarring the Eustacian tubes in some way - this accounted for my full, clicking ears which were also very sensitive to pressure (although I have since found that out that Labyrinthitis very often causes "ear" symptoms as well as dizziness). He prescribed me some exercises to do to retrain the brain and suggested I stayed clear of anti-dizziness medications as this could hinder the compensation process. His last words were "it may take several months" and on hearing it, I felt oddly reassured that that was why I had not yet recovered like the first GP had predicted.

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It did indeed seem to be taking several months and the more time went on, the more disheartened I became. The whole thing was making me feel quite low as persisting with my course was so very hard as it was demanding and very practical - I had to be alert and able to be physically active. I tried the exercises though by the time I got in from university every night, I just wanted to sleep and so never seemed to keep up with them plus they seemed incredibly mundane and I somehow doubted their effectiveness.

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I contracted a few colds and other infections which sent my dizziness insane - the dizzy, disorientated feelings would be magnified and I'd have to stay in bed and sleep for the majority of the infection. Trying to walk with a cold was a nightmare - my dizziness was scary and I worried my ears had been hit again with another virus. On one occasion I fell in the street as the ground just dropped beneath me - a passer by picked me up and said "Are you drunk?". "No" I said "But I feel it". Each time after a cold, it would take up to 2 weeks for the dizziness to return to its former state. I would also often experience "true vertigo" with colds - where all I could do was lie down and grip hold of the bed whilst the room spun violently around me.

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For the last 3 or 4 months of the course, I would cry myself to sleep every night praying the dizziness would stop and every morning I got out of bed just hoping that today would be the day I would get my life back. In June 2003 I graduated. Although I had graduated from a university before at undergraduate level, my success in achieving this qualification meant so much more to me because it was such a hurdle for me to have got there.

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I went on a long plane flight in August 2003 as I thought getting away and recuperating may be what needed. To my horror, I suffered huge dizziness problems both in the air and when disembarking. I developed a constant motion feeling in my body, as if I was a pendulum and the ground constantly moved - I could both see it visibly jumping and feel it beneath my feet. Anxiety grew at this point and felt very scared to even go out. Before the flight I got respite from the dizziness by lying down - now lying down merely made the ship feeling more intense. I felt as if I was on a permanent water bed and sleeping with this feeling was very difficult and disconcerting. This I learned, was a form of vertigo.

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The feeling eased after about 2 months though the constant motion stayed with me for some time. It varied in intensity. Most of the time I felt like a ship on calm waters - other times like I was in a force 10 gale in the middle of the ocean. 

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After seeing the same ENT again, as well as Neurotologist at a top hospital in London (who confirmed my diagnosis and insisted I would recover) I undertook a Vestibular Rehabilitation Therapy programme. For those with chronic or prolonged balance issues, this appears to be the only cure - as well as time. The exercises are designed to provoke dizziness and aid the brain to compensate for the damaged inner ear. Diligence is essential and the exercises must be done regularly and over a long period before improvement is noted. 

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After about 18 months of the VRT, I recovered. It was gradual but I slowly started to realise that environments that used to cause me symptoms no longer did. I think my whole journey took about 2.5 years. I was working full time by spring 2006.

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What have I learnt about my experience?

 

Too much to even mention. I have realised the difficulites and frustration faced when having a chronic health problem; I have learnt that illnesses where you "look fine" are incredibly difficult to cope with as people think you "are fine". Inner ear dizziness is a very strange symptom - firstly you have the fact that most people think of dizziness as lightheadiness or faintness where as inner ear dizziness could not be any further from this description. Secondly it is just too tricky for people to see dizziness in someone else - they can't. Thirdly, the majority of people thought I had "spells" of dizziness and had no idea it was there constantly.

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I learnt the value of good health and also of the meaning of friendship. Some found it hard to gauge, others got bored when I'd had it for so long, many had no idea of just how much I was suffering. Others were simply amazing. They were patient, constantly supportive, understanding and most of all, gave me hope. Of course I have encountered unhelpful comments like "Will you have it for life then?", "I feel dizzy too as I've got a cold", "You've had that for ages, isn't there anything you can take?" and "There are far worse things you could have" (this last comment is true but it certainly isn't an appropriate thing to say to someone suffering from such a distressing condition!). I simply had to boil inside at such comments and smile on.

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I learnt to be more compassionate. I realised that because I look and sound fine, sometimes people can only relate to what they see or what they've gone through themselves, or what they THINK they know. I have so much more patience and tolerance for other people and their limitations and faults because of MY experience with this. You just never know what someone else is going through.

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When such few people understand the nature of vestibular disorders (including the medical profession as I learned) it is even harder for people to understand that having a chronic illness can also lead to feeling low.

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One thing that did keep me going throughout my ordeal was an internet support group for people with inner ear problems. Through this I met Isla, who I spoke to a lot about the illness as she had just he same symptoms and experiences as me. It was so nice to find someone who actually knew what I meant when I said that objects moved and the ground bounced! Her friendship kept me strong and I am very grateful I found her.

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Anxiety is another factor I experienced a little with this. Although luckily mine has never been severe, on occasions I certainly exhibited 'avoidance behaviour' but who wouldn't with this disorder? I learnt to try and overcome this by making myself to do more, though this did not mean putting myself in situations I knew I would find too difficult.

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Most of all however, I now have extreme empathy with other people with chronic vestibular disorders. I aim to do all I can for this disabling disorder of "uncompensated Labyrinthitis" to become understood and most of all, recognised that a patient diagnosed with this illness doesn't always recover within the standard 8 week time frame.

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Labyrinthitis - A Friend for Life?

(By Isla, written over 15 years ago - she first suffered over 20 years ago, when she was 27)

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What can I say? Truly and honestly Labyrinthitis 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.

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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.

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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.

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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.

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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.

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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.

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I was told and I quote “Don't 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.

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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.

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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!

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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!”.

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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.

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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.

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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.

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

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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. 

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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.

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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.

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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, I was 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.

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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.

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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.

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Cognitive Behavioural Therapy (CBT) is very important too, as with any chronic disorder it’s very common to experience both depression and anxiety. I saw a CBT practitioner 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.

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I eventually resumed normal living. It took time. 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 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.

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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.

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

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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.

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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.