After my concussion and brain injury, I was dizzy for a year. Not just light-headed, or feeling faint. The world was spinning in front of my eyes. Objects seemed to whirl in space. My brain was busy trying to repair itself, but had to retrain to cope with this new problem at the same time.
Dizziness is a serious problem
As reported in the NRTimes, dizziness can be hidden behind other injuries at first and can even interfere with treatments. When you are finally up and moving around, dizziness can be very isolating. Gail Archer is a clinical lead occupational therapist at Neural Pathways and is quoted in the article:
“One client couldn’t go to the local shopping centre because the patterned floor made her feel uneasy, and there was lots of movement around her. All the noises and feedback going into her visual field made her feel unsteady, like she was going to fall. She’d grab onto shelves in supermarkets.”
Trapped and alone
My dizziness left me feeling trapped and alone. For months, I avoided busy areas wherever I could, but even familiar spaces can cause problems. I once became trapped in a bathroom. It was a place I’d been many times and I could simply turn the lock to free myself.
But, in my vision, the door was sliding to the side before springing back and then sliding again. The handle seemed to be moving in space and ‘catching’ it was difficult. Eventually, I had to knell on the floor and move my hands up the door to find the lock. I didn’t feel safe in there after that.
Dizziness isn’t normal
At my first A&E visit, I was told that this dizziness was a normal symptom of concussion which would fade over time. It didn’t. Dizziness was my constant companion and I feared I would be struggling to live in a spinning world for the rest of my life.
It took a full year before I had a diagnosis of ‘vestibular migraine’. My relief was immense. Finally, I had a name for this. The diagnosis also meant a referral to a new clinic, and a reassurance that there were treatments which could help. I had a lot to learn about how the body perceives dizziness and maintains a normal balance.
'The vestibular system…is a sensory system that provides the leading contribution to the sense of balance and spatial orientation for the purpose of coordinating movement with balance.’1
As most people would assume, the inner ear is part of the vestibular system. But it is not the whole vestibular system. The brain processes the information from your limbs and eyes as well as your inner ear to maintain your balance. All these organs and sensations combined are your vestibular system. Interference with any of these parts of the vestibular system may cause balance, dizziness or vertigo, or a combination of all three.
Difficulties diagnosing vestibular injury
During my recovery, I was a member of the Headway North London group. One evening, the group hosted Dr Seemungal, a neurologist at Imperial College London. His presentation formed the basis of my understanding of the vestibular system, and was reproduced in my book with his kind permission.
Dr Seemungal also donated his time to another presentation in April 2021. This time it was to the Headway West London group, and was held over Zoom thanks to Covid-19. I have tried to use lay person terms in my notes and hope they haven’t altered the meaning.
Dr Seemungal explained that there are four ‘types’ of vestibular injury which can arise from a brain injury. These can be broken down into roughly anatomical sections:
- Injuries to the nerves & ear labyrinths
- Injuries which cause problems with gait (walking)
- Injuries which cause cognitive problems
- Injuries which affect function of the body, e.g., : visual symptoms.
A patient with a brain injury may have any combination, or all of these. Usually, a health professional will look for one diagnosis to explain all the symptoms, rather than considering multiple causes. That is changing, as both health professionals and patients become aware that someone with a TBI may have more than one diagnosis. Moreover, treating one problem may leave the patient with unresolved problems. At one stage of my recovery, I was in four separate brain injury clinics and undertaking several courses of treatment at once. This was difficult and exhausting, but it did work!
One of the effects of problems with the vestibular system is vestibular migraines. Vestibular migraines are sometimes referred to as migrainous vertigo and are a type of migraine which mainly causes extreme dizziness. To my lay persons ears the explanation was ‘your migraines make you dizzy, and your dizziness gives you migraines.
Such was the cycle I was on for over a year. I started a process of completing a migraine diary to find triggers, and I started on a treatment for migraines prophylactics. I was also referred to a Vestibular physiotherapy clinic which greatly improved my recovery. But, as I explained above, it took a great deal of time to get to that diagnosis.
Dr Seemungal, and his colleagues, continue in their efforts for improved diagnostic techniques to improve the lives of those with brain injury. You can find out more about those techniques here or learn more about my book here.