Think of the last time your head spun, and you lost your balance. Maybe it was a spinning carnival ride, or a game with your friends of ‘who can stay upright the longest while twirling around on the spot’. You gradually become more and more dizzy; you lose your balance; everything spins around you. Your head feels heavy, maybe you vomit.
You lie down until the sensation passes, and after a little while you get up and stagger off, soon forgetting how unwell you felt. Now remember the worst vertigo you’ve ever experienced, then multiply it by ten. That was my life for fourteen years, except nothing I could do would stop the vertigo.
After a difficult pregnancy, I was born a tiny but full-term baby with an extremely floppy neck. When I was just four months old, I started vomiting green bile for hours, every six weeks. My mum consulted doctors and paediatricians about the vomiting and my neck, but no one knew what it was, and no referrals were made.
I just calculated that conservatively, I would have had around 122 ‘dizzy spells’, as I called them, or 3,000 hours of severe vertigo and vomiting, lasting up to 24 hours each episode. It would start mostly in the early hours of the morning; I’d wake up with the first waves of nausea hitting me and I’d be willing it to stop, saying “no, no, no!” to myself. My siblings and my long-suffering mum would hear me yelling “I’m having a dizzy spell!” at the top of my lungs, so they could grab a vomit bucket and move me to the lower bunk bed. Any little movement was hell, sending waves of vertigo over me, disturbing my sleep and making it impossible to keep any food or water down. Something like going to the toilet took hours of mentally working up to it, until I was absolutely busting. Mum’s back suffered from lifting me out of bed.
Whenever a dizzy spell occurred in public, no one offered any help. Once, before mobile phones existed, an ambulance was called to take me from Montessori kindergarten to a hospital, as they couldn’t find Mum, who was shopping. When Mum finally arrived at the hospital, she found me lying covered in my own vomit, on a hospital bed. The nurses wouldn’t clean me up, and Mum had to beg them to allow her to take me home. Once she’d signed the discharge papers the nurses promptly disappeared and mum had to get me to the car unaided, with a baby and a child in tow. Thankfully the hospital paediatrician was the one who finally found a diagnosis.
I was diagnosed at five years old with the condition known as ‘Benign Paroxysmal Vertigo of Childhood’ (BPVC). No medical definition has ever fitted my experience, and one doctor has since commented that my case was “anything but benign”. Other lived experiences of this condition are all completely different from each other.
The last episode I ever had occurred, to my embarrassment, at my homeschool formal. One of the parents commented “oh is she praying?”, as I dropped first to my knees, and then lay down on the stage while everyone else continued partying. The sensation of life continuing in front of my tightly-squeezed-shut eyelids still haunts me.
On medical advice I gave up my dream of becoming an aircraft pilot (only to be told recently I would probably have been declared fit), and delayed going for my driving ‘L’ plates until I was 18.
In many ways I had a pretty normal childhood. I loved reading, I was active, I did many extracurricular activities (thanks Mum), and I made wonderful friends. The dizzy spells were part of my life, but they didn’t stop me from living. It never occurred to me that I had a chronic condition, or that it might affect me for years to come. I just took life one day at a time. We had so much else going on in my family that there was no time for ‘poor me’. However, it did affect me, and my family, and the lack of support around serious childhood illnesses in the 1990’s still plays on my mind.
My Mum says, “there were so many times someone could have done something, but they didn’t”.
Because of the severity of the dizzy spells and the fact that they would occur again and again, and again, from an early age I developed phobias and obsessive-compulsive traits to deal with the stress. Even after the dizzy spells stopped at age 14, I was still terrified that they might happen at any time, and I would do anything I could to make sure they didn’t occur.
I would avoid going to or even looking at locations where a dizzy spell had started, such as a certain playground, or the compost heap on our farm. In my old bed, where most of them occurred, nearly every night I would repeat made-up mantras, or rock myself from side to side to prevent one happening. If I thought about the dizzy spells or felt the slightest bit unsteady due to warm weather or turning around a little too quickly, I would physically clench my neck several times or tap out a pattern with my toes until the feeling passed. I also had intrusive thoughts about what could happen to my family and I if I didn’t do these patterns.
I hated the way I couldn’t control my response to triggers, and I felt trapped in my mind. I didn’t know how to move on, and I wondered if I was going to be reacting this way for the rest of my life. I never considered talking to anyone about it, or that my coping strategies might be unhealthy. I was just intent on keeping my world still and upright. I wasn’t happy, and I wanted to be free of the obsessive behaviour.
In 2007, aged 18, I was at church one day when out of the blue I had a spiritual experience that took away my fear of the condition and the triggers. As soon as the service finished, I begged my best friend to find someone to drive me up the street to the playground that I’d been avoiding for a decade, to prove to myself that the fear was gone. I was able to do this during the next week. I sat in the car as we drove towards the park, feeling nervous but excited. As we drove past, I summoned all my courage and glanced at it. The grass was mown, and the mural seemed brighter than I remember. I didn’t feel dizzy; I didn’t feel nausea. The relief and joy I felt at being free of that phobia was indescribable. Gradually I was able to confront each fear and leave them behind.
I am not ‘cured’; I still avoid vertigo at all costs. While the compulsive behaviours haven’t all disappeared, they no longer have the same power over me, and I am more in tune with my mental health, thanks to the support of people around me. My experience has given me much empathy for children and teens struggling with similar issues, and anyone who experiences vertigo has my full sympathy! I would not wish it on anyone.
I still don’t know why I was so sick, and no one has any answers. Therefore, I want to use my story to increase awareness of how isolating childhood illness can be, and that it does get better!
If anyone has had a similar experience with childhood vertigo, please get in contact, I’d love to compile and compare stories for research.