My Labyrinthitis Story

Labyrinthitis is without a doubt the most frustrating, depressing and draining illness I have ever had. Well done to all of you coping with this and stay strong!!

I contracted labyrinthitis in the middle of November 2010. I am convinced labyrinthitis started from extreme stress. I had been on a diet that eliminated a lot of food i.e. wheat, dairy, sugar, caffeine so my energy levels were very low and around the same time I was under an awful lot of pressure in work. I was also experiencing a very emotional personal issue. I think everything combined triggered the labyrinthitis.

I hadn’t been feeling great for about a week, very anxious & tired, slightly dizzy and I kept feeling faint and getting heart palpitations. I went to the doctor and he diagnosed me with labyrinthitis. I didn’t understand what it was so I went home and for a few days and still just felt a bit dizzy, lightheaded and tired. A couple of days later I was sitting at the kitchen table talking to my mother and suddenly I felt the room spinning really badly, I thought I was going to pass out so I had to hold on to the table. I thought ‘I need to get into bed’ but I could barely walk up the stairs. Lying in bed I honestly thought I was dying! I was shaking, dizzy, panicking and disorientated. I felt like I was sinking into my bed. We called the doctor to my house the next day, and she confirmed that it was the labyrinthitis symptoms coming on suddenly.

The only way I can describe the next couple of months is TRAUMATIC. I lay in bed feeling dizzy, so weak & fatigued that I could barely lift my head off the pillow, totally isolated and having panic attacks. My mother had to leave my meals on the bedroom floor before she went to work because I was too dizzy to go downstairs.  Every time I stood up my legs would start shaking so uncontrollably that I thought they would cave beneath me. I was convinced there was something else wrong with me, not labyrinthitis . I kept looking up my symptoms on the internet (which is a bad idea) but everything confirmed what I already knew I had – labyrinthitis. I kept telling my friends not to call up to the house because I was afraid of fainting as I was so weak. I was terrified that my dizziness would get really bad or that I would have a panic attack. I think one of the worst things about labyrinthitis is the anxiety and panic. Labyrinthitis is such a lonely illness as you want to protect yourself from feeling dizzy. Its so hard to get back to normality when your head is so cloudy and you feel so disorientated and cant think straight. I ended up just wanting to be in bed all the time as this is the only place I felt safest. This of course led to me eventually suffering with depression.

Slowly I became more mobile by moving around the house a bit each day. The symptoms ceased slightly and I went back to work way to soon, after about two months, because I felt guilty. My body was completely exhausted, I was still dizzy, still having panic attacks and ended up getting much worse. Everyday after work I would hobble down to the bus stop, go home and just get into bed. After about six weeks in work, I was so dizzy and exhausted I needed to take more time off. I really thought the labyrinthitis was going but I was just feeling worse everyday. I went to yet another doctor who told me I had chronic fatigue syndrome, anxiety and mild depression, all of which had nothing to do with the labyrinthitis and would be cured if I went for a ten minute walk everyday. Ten minutes?? I could barely get out of bed!! I didn’t know if I still had labyrinthitis which made all the symptoms even more frightening.

After months of crying, trying every alternative therapy going and constant worrying whether I was ever going to get better, the miracle path to recovery came! My sister in law is a yoga teacher and spoke to a lady after a yoga class by chance one evening about why she was there. She also suffered from Labyrinthitis that lasted months and she was recovering. She gave my sister in law the number of a physiotherapist who specializes in Vestibular Rehabilitation Therapy (Sandycove Physiotherapy Clinic) and said I need to ring them straight away. I didn’t even know who I was ringing I just called and said I’m dizzy and I need to make an appointment! My first consultation was everything I had been praying for. She knew exactly what was wrong with me and could explain to me why I was suffering with anxiety and what made it worse etc. I actually cried with relief when I left the clinic! She gave me a list of gentle head movements and balance exercises designed to get the vestibular muscles working again. My symptoms did increase at the start and the fatigue was debilitating but after 3.5 months I returned to work!

Everything was going great for about 6 months but I wasn’t looking after my body as I should have. I was still drinking alcohol, still staying out late and working in the stressful job. Inevitably the labyrinthitis came back. However this time I had the tools to recover, and more importantly I wasn’t afraid of it anymore. I recovered from labyrinthitis again after about another six months of rest and vestibular therapy. I have since made lots of lifestyle changes to ensure I keep my body strong such as switching to a less stressful job, cutting alcohol out of my life, getting lots of rest, twice daily Transcendental Meditation and above all knowing my limits.

I am now dedicating my time to raising awareness about inner ear illness and vestibular disorders. I am an ambassador to defeat dizziness with Vestibular Disorders Association (VEDA), a qualified physiotherapy/ physical therapy assistant, I hold an Honours Bachelor of Science degree in Psychology & I am currently training to be a Psychotherapist. I also wrote a book to provide sufferers with the vital information they need to recover from both the physical and psychological effects of chronic vestibular illness.

To everyone suffering all I can say is HANG IN THERE!! You will get better even though it doesn’t feel that way, but you need to start VRT immediately. Talk to your friends or family and explain how you are feeling and try to stay strong. I have listed some links of online support on this website.

2 Responses to My Labyrinthitis Story

  1. Alan says:

    Well done setting up the site, it looks great. Sounds like a nightmare alright.. at least this will help other people who are in the position you were in.

  2. Amanda Jackson says:

    I really love this site. I am suffering from this condition and have been for 9 weeks now I have finally persuaded the doctors to refer me to ENT and I’m also looking at finding a physiotherapist in my area who specialises
    In VRT. I hope it does go sooner rather then later as its horrendous I have to work to pay for bills but each day is as bad as the next I cry all the time at work and cry when home I feel unsociable every time I do try and go out I panic and feel sick and very balanced. Thanks for putting this site together x

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