Rebalancing life after a vestibular disorder

Dr Liz Walder | 19 September 2017

How would you feel if you suddenly woke up and the room was spinning so violently you couldn’t get out of bed? However, you really need to as any minute now you are going to vomit. By holding onto the walls and physically crawling along the floor, you eventually reach the bathroom. Here you throw up violently, whilst your head feels like it is on a waltzer at a fairground.

Eating is then a feat in itself because every motion is accompanied by a wave of nausea. Trying to focus on the spoon is also an impossible task. Then there is the problem of not being able to walk without holding onto something and seeing the room spin every time you lift your head or move. These are just some of the symptoms you may experience when suffering from a vestibular disorder.

So how do I know this? Unfortunately, I experienced it about 12 years ago and I am still suffering the after effects. 

Your vestibular system includes parts of the inner ear and brain and is responsible for controlling your balance and eye movements. If disease or injury damages these processing areas, vestibular disorders can result. According to the Vestibular Disorders Association (VEDA) in the US, approximately 35% of adults aged 40 or older have experienced some form of vestibular disorder. They can have a huge impact on lives, both physically and mentally, but also emotionally.

Some of the most commonly diagnosed vestibular disorders include benign paroxysmal positional vertigo (BPPV), labyrinthitis and Ménière’s disease. Treatment varies depending on your condition. Some can be treated with medication, while others involve surgery or extensive vestibular rehabilitation. For BBPV, a repositioning manoeuvre (called the Epley manoeuvre) can have an immediate effect, but other conditions may need to be permanently managed.

Obtaining an accurate diagnosis is very difficult, and I should know. After 10 years of on and off dizziness and inability to walk straight, and endless appointments and tests with Ear, Nose and Throat doctors, neurologists and inner ear specialists, I was finally diagnosed with left peripheral vestibular disorder and visual vertigo. Phew…it was official; I was not going mad!

The difficulty of getting an accurate diagnosis is regularly reported by people suffering from unexplained dizziness or vertigo. To address this, VEDA organises a campaign every year to increase awareness of vestibular disorders.

Obviously, this campaign means a lot to me, not only because of the support VEDA has given me but also because of the real need to improve recognition of these misunderstood disorders.

Living with a chronic condition is hard, and sometimes other people unintentionally make it harder. It is easy to jump to conclusions if you see someone staggering and falling over. By giving vestibular disorders a higher profile, I hope that people will consider that someone who appears to have been drinking might in fact be suffering from a debilitating, sometimes embarrassing condition which they can do nothing about. So please remember: we may be dizzy, not drunk!