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Gillian's story

Gillian shares her experience of having dizziness and balance problems

Gillian's story was first published on our website in 2011.

Gillian's dizziness started following a bout of flu, but continued after her recovery, affecting what she could do and where she could go. In this article she describes how it feels to be dizzy, how her condition was tested and treated, and what advice she would give to others in her position.

How it started

My experience of dizziness started in 2003, after a very bad 'flu / cold, from which I just never seemed to recover. A few weeks after going back to work, still feeling awful, I experienced dreadful ear pain, a feeling of blocked ears and then very suddenly a dreadful spinning and nausea. This was diagnosed as viral labyrinthitis and I was given Stemetil and told to go to bed until the spinning subsided.

After 7 days in bed the awful spinning did subside, but I still felt dizzy and unbalanced, as if I was walking on spongy ground and couldn’t feel my feet hitting the ground. If I drove or made a long journey, the vertigo came back with a vengeance and usually had me in bed for days on end. These symptoms continued for 5 years, coming and going each time I made a long journey or had a cold. I would go back and forward to my GP, who tried me on various drugs - stemetil, serc, antihistamines - but at no point did I ever see a specialist.

I soon became quite anxious about travelling as this always triggered an attack and at one point I actually felt unsafe to drive so I stopped for a few months. As I had by then been diagnosed with ME (which I am sure stemmed from the original labyrinthitis / flu), my dizziness was just attributed to this.

A spinning, moving world

In 2008 I nearly lost my life to Meningococcal Septicaemia, which strangely attacked my vestibular system. One of the routes the bacteria can take is via the ears and I have always wondered if I have had a chronic middle ear infection which had worked its way into my brain. Since 2008 I have lived in a spinning, moving world with constant sensations of the inside of my head spinning and dragging, visual distortions like the floor coming up to meet me, and the walls bending. The sense of movement in my head never stops, so the only relief I get is when asleep!

It is made much worse by any movement I make or by watching movement. Shops, wallpapers, even watching TV or the computer can also worsen the dizziness. The temptation is to stay completely still and asleep! This has left me unable to stand up without crutches and needing a wheelchair for any distance. I have also experienced daily migraine-type headaches, which are now quite well controlled on a migraine preventative, Pizotifen.

Fully investigated

As Stemetil and Cinnarizine had helped in the past I was again prescribed them long term 3 times daily for 9 months and they did help. However, 9 months after the meningitis I was still very disabled and asked to be sent to a specialist to see if something could be done to help. I saw an Ear, Nose and Throat (ENT) surgeon/otologist who had me fully investigated, with an MRI scan, ENG (Electronystagmography) test, Caloric test and Hallpike test (you can read more about these tests here).

After an anxious wait, as by this time I was worried I had a brain tumour, it was confirmed that there was damage to the vestibular system and that for some reason my brain hadn't compensated for this damage - partly due to long term vestibular sedatives and also due to the fact that my ME and vertigo made me pretty immobile.

Vestibular rehabilitation

I was started on a programme of vestibular rehabilitation involving various eye exercises, standing with eyes closed, walking on different surfaces and visual desensitisation. Unfortunately any moving of my head made me dreadfully sick and worsened my migraines, so I was told to stop. I still do the visual desensitisation exercises, involving looking at a moving screensaver, and this is slowly helping.

The last part of my complex puzzle is still ongoing, as because the vestibular rehabilitation worsened my migraines, my specialist wondered if part of the dizziness could be being caused by the headaches and not the balance system! I am now awaiting an appointment with a neurologist for treatment of MAV - migraine associated vertigo. This may explain the visual vertigo and weird distortions which have been present since the Meningitis.

Advice to readers

I live in hope that eventually my world will stop spinning enough for me to be able to walk independently and to be allowed to drive again! Only when I look back on the course of my dizziness problems, do I realise that I should have had specialist treatment within a year of my problems. I would urge other readers to insist on specialist investigations early on, in the hope of early diagnosis and treatment.

I have hesitated to submit my story as it may sound unduly pessimistic, but I hope it helps in some way - even if to make you realise how disabling and truly unpleasant any balance/dizziness problems can be.