Labyrinthitis - Emma's Story

UPDATED - at bottom of page...

A Warped World.

Emma, 28 years old.

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. 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 had 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.

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.

At the time, I was doing an intensive University course so keeping up with this was difficult. Aswell 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 Menieres Disease - a vestibular disorder which is caused by high inner ear fluid levels. 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.

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.

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.

I contracted a few colds and other infections which sent my dizziness insane - the spacey, 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.

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.

I went on a long plane flight in August 2003 as I thought getting away and recouperating 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.

The feeling eased after about 2 months though the constant motion is still always mildly with me even now. It varies in intensity. Most of the time I feel like I'm in a ship on calm waters - other times like I am in a force 10 gale in the middle of the ocean. I am now motion intolerant and days after a car or train ride, I have the motion.

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 am now undertaking 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. I am noticing that my "good" phases are getting longer though the progress is slow. I am now clear and mentally prepared for the fact that recovery will be a long haul.

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 think I have "spells" of dizziness and they have no idea it is there constantly and has been all this time.

So, I think I find some of my mental exhaustion stems from people not being able to understand how I feel. Of course when you look fine and can also function well (or appear to) on most days, simply carrying on as normal when you couldn't feel further from normal, is excruciatingly draining.

I have learnt the value of good health and also of the meaning of friendship. Some find 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.

I have learned 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.

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 depression. Especially when I hid it so well. I had moments of not wanting to carry on - what was the point if I was to have a life of this? I am unsure to this day how I got through such moments though it most probably has a lot to do with a few good friends and family who reminded me of the words when I had forgotten the song in my heart.

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 Ilia, 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 has kept me strong and I am so very grateful I found her.

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

Although the future is uncertain, I have confidence that the VRT will help me gain more of an independent life. I have to hope for a full recovery as without hope I'd find things very difficult. This has been the hardest patch of my life in so many ways but I hold onto the fact that this was meant to happen for a reason - little things in life which I used to worry about no longer seem important.

I do feel that what "shall be, shall be" and I think patches such as this are presented to us to help us re-evaluate things. I have reassessed virtually every aspect of my life since getting this and I have grown as a person. I know I will not be the same person once this phase of my life is over.

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.

UPDATE (24th December 2004).

Emma has finally seen a Neurotologist - diagnosed with left inner ear damage - same as Ilia! She is on their VRT programme and is scheduled to have CBT. They suspect the anxiety/depression (although not too severe) has hindered Emma's recovery but also clearly said that dysfunction from Labyrinthitis can go on for a long time and they don't know why people recover at different rates. Ilia recovered at the 3yr mark so Emma is not there yet! She's hoping 2005 will see big improvements for her. In the meantime, she plods on through the "Labyrinthitis journey" - determined to beat it in the end.

UPDATE (6th December 2005).

Emma continues to do tailored VRT prescribed by her Neurotologist - but no improvement noted yet... still waiting and coping! She passed the 3 year mark in October...

UPDATE (April 2006).

Emma is now working full time (her career can't be halted any longer and her threshold for coping is higher these days!). No improvement in dizziness.

UPDATE (August 2006-present).

Emma is coping well with work and lives a normal life, making sure the dizziness doesn't restrict her. She has recently resumed her VRT after a lapse.