During the summer (northern hemisphere) of 2008 I started to have a severe attack of a recurrent balance problem of eight years standing. This time I was bedridden for weeks with vertigo, dizziness and constant nausea. Not to mention the panic, anxiety, stress and depression caused by the vile and unrelenting symptoms. It was certainly the worst illness I have experienced, and the worst period of my life so far.
I was prescribed five different medications, which I tried in turn, and then some of them concurrently, but none of them made me better. I was in a pit of despair for weeks and weeks on end, with absolutely no sign of getting well again. I saw the rest of my life as isolated, lying in bed, totally reliant on other people… only able to shuffle at a snail’s pace to the bathroom and back, sometimes listen to the radio and cry. I could barely walk, as even the tiniest head and eye movements provoked worsening of the symptoms. Either the world felt like it was moving around me, or else I felt that I was moving when I obviously wasn’t. Walking a few steps felt like I was walking on the deck of a ship in the middle of a storm – this is no exaggeration. The smallest tip of my head downwards produced the feeling of standing on the edge of the world’s tallest building. I couldn’t read or use any kind of screen, and found eating extremely difficult due to both the persistent feeling of motion sickness and the very small head movements caused by chewing bringing on unacceptable levels of vertigo. When I moved a limb in one direction, I felt as though my whole body had moved in the opposite direction. I couldn’t wash due to all the movement required, and most days I couldn’t clean my teeth. Closing my eyes also made the symptoms worsen, which made falling asleep almost impossible and serious sleep deprivation kicked in. The times that I did manage to drift off, I would inevitably be woken up suddenly by spinning or jerking sensations and intense nausea.
In short, it was utterly wretched and bewildering.
Because I requested it, a GP referred me to a specialist in a hospital roughly 70 km away. The NHS waiting list was approximately 6 weeks. Asking someone with a severe balance problem to wait for 6 weeks, then endure a car journey of this length and then find their way around an unfamiliar and busy building is somewhat akin to asking someone who has broken bones in their feet to jog to their local A&E department for treatment.
As the specialist also works privately, I asked for a private referral to see if I could jump the queue. When the appointments finally arrived through the post, it turned out the NHS appointment was before the private one. Such is life. So the NHS it was.
After waiting through 6 weeks of torture, I made the also torturous journey to see the specialist, only to find… he was off sick with a bad back. Instead, I was to see a junior member of his team.
I was told that there could be no firm diagnosis at this stage, the only answer was to ‘keeping moving about’, have ‘balance tests’ in the hospital at a later date, and he would re-check my MRI scan from two years ago to make sure there was nothing indicated on it. He immediately took me off the medicine prescribed by the GP and instead prescribed medication for what is elsewhere called ‘migraine associated vertigo’ and for the motion sickness. A couple of weeks later I had the unpleasant balance tests, for which I had to stop taking the motion sickness medicine. The tests found nothing wrong and I was then put on another waiting list for physiotherapy.
I have always had quite a lot of headaches, and earlier in 2008 had experienced my first visual disturbance of enlarging bright flashing lines, which was a bit scary, but I did not realise that this made me a migraine sufferer. I had assumed that having migraines meant clutching at your head in the severest amount of throbbing pain, feeling sick and sensing an ‘aura’, whatever the heck that means.
The medications seemed to start slightly alleviating my symptoms and allowed me to begin down the road of weeks (so far 5) of repetitive Vestibular Rehabilitation exercises. These are exercises involving eye movements, head movements, whole body movements, and various combinations of these. It is a difficult, long, hard slog and it demands a happy, positive frame of mind. I still have yet to see an actual NHS VR physiotherapist and have so far been giving myself the physio. Thanks for your prompt and efficient service, NHS. It is now three months since I went to see a GP about this particular attack (and it is eight years since I first complained to a GP about vertigo).
In a rather cliched way, I now have even more appreciation of normal, everyday life and am determined to return back to it. I want to take part in life, with as many of my senses intact and functioning properly as possible. Being virtually trapped in bed and unable to move my head or eyes much for over six weeks tends to focus the mind on what is important. I see other people fretting or fighting over inconsequential things, and I don’t know why they do it anymore. If you are in reasonably good health and have people to love who love you, then everything else is small fry. If I fully recover, I will probably continue to have bouts of this illness in the future. That makes it even more important to enjoy life between the bouts.
I hope you never get this illness. Here is one woman’s story. Here is another. And a famous one. Apparently 40% of the UK population has suffered from a balance disorder by the time they are 60 years old.
What are the chances. Quite high it seems. We have a finite amount of time alive and something like this or worse could happen to you at any time. Don’t use this as a reason to worry. It’s a reason to enjoy everything, have a laugh and make the most of being healthy when you are.
