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Immie Lamont had her sights set on a future as a competitive cyclist, but being diagnosed with the autonomic nervous system disorder dysautonomia stopped her in her tracks. Now 17, she tells Paulette Crowley about what it’s like to live with the condition and what she’s learned about self-worth, setting goals and the importance of taking each day as it comes.
At the start of 2024, I was 15 and training as a competitive cyclist. I trained or competed six days a week. I loved cycling and had been doing it from year 9; it’s a high-intensity sport if you want to perform at a high level.
On day two of the Track National Championships in March 2024, I was in a race at the Cambridge velodrome when two girls in front of me crashed. On track bikes, you don’t have brakes or gears. There wasn’t anywhere for me to go – I hit one of the girls’ bikes and went flying through the air like Superman, before I hit the ground and slid for a few metres. I had a third-degree burn on my hip and other burns from sliding on the wooden track. I also injured my leg.
I went into a state of fatigue immediately after the crash. At first, I didn’t think about it much because I was in shock and focusing on treatments for my injuries. But I was never quite right after that, and it just got worse.
Back at school, I was finding it increasingly hard to concentrate and I couldn’t retain any information. By lunchtime, I would have to text my mum to be picked up from school because I was unable to concentrate, had a bad headache and was being blinded by the school lights. I was nauseous and exhausted, and my skin was blotchy. I felt awful.
I had lots of tests to find out what was going on and eventually I was diagnosed with coeliac disease. We thought that was the answer, but my fatigue and other symptoms persisted even when I stopped eating gluten. In fact, they kept getting worse, not better. I’d returned to cycling but in June I had to pull out of a race as I felt terrible. I came off the track in tears and haven’t cycled since.
My mum thought I had ME/chronic fatigue syndrome after we realised coeliac disease couldn’t explain what was going on. While we were waiting for an appointment with a cardiologist, we went on a family holiday. When I returned, I was bedbound for two weeks. I had to have my meals in my bedroom because it was too much for me to even walk out to the kitchen.
Then I saw a cardiologist who did a standing test to measure my heart rate and blood pressure. The test showed my heart rate was elevated and, most critically, that my blood pressure plummeted when I stood up.
I was diagnosed with dysautonomia, a chronic and complex disorder of the autonomic nervous system (ANS). The ANS regulates many of our important involuntary bodily functions, so when it’s not working properly it gives rise to the symptoms I was experiencing, like low blood pressure, elevated heart rate, severe brain fog, headaches, inability to filter light, nausea, dizziness, blotchy skin, low immunity and ME/chronic fatigue syndrome. There are 15 types of dysautonomia and mine is late-onset orthostatic hypotension – as my blood pressure drops on standing.
Dysautonomia is also highly correlated with autoimmune conditions, such as coeliac disease, and being hypermobile. Viruses, like Covid which I had, and other stressors are also thought to make you more susceptible to developing dysautonomia. For me, the cycling crash set it off. Some people don’t recover and have to manage their symptoms for life, but teenagers have a good chance of recovery. It takes years though. So far, it’s been 1 and a half years for me and in that time, I’ve hardly been to school, I haven’t been able to socialise much and have had to give up returning to competitive cycling.
I’ve tried to apply all my determination to getting better and doing everything my doctors and team tell me to. My treatment includes resting and pacing. I have an exercise rehabilitation programme with a specialist clinical exercise physiotherapist. I take medication for my blood pressure and have a lot of salt. These are all standard treatments for dysautonomia. I also do special breathing exercises with a physiotherapist and found vagus nerve physiotherapy and stimulation really good. Nutrition is important, too. I have lots of support from family, friends and my team and school, which helps a lot.
For me, believing I will get well is also important. That was hard at the start when I was so unwell. But I’m definitely getting better; my heart rate is normal and most of my symptoms are much better, but shifting the ME/chronic fatigue syndrome will be the hardest thing and it will take time. I’m still only at school part-time but doing more as time goes on.
I’ve always had big goals in my life but now I’ve had to shift them. I was aiming to go to the junior world championships in track cycling but now I am focused on going to university, hopefully overseas, to do commerce in accounting and finance.
Living with dysautonomia has made me aware that people can be dealing with really hard things that aren’t always obvious, so we need to be kind to others. This condition has also taught me that my worth is not tied to my achievements, it’s just inherent within me.
