Jennifer's Story
I am 20 years old and suffer with neurocardiogenic syncope (also called vasovagal syncope). I had my first real episode aged 14, sitting at my desk in school, and from then on I'd pass out three or four times per week. Eventually my doctor referred me to the medical clinic where they were convinced that I was suffering from epilepsy. I was given countless EEGs and CT scans, but they told me that there was nothing wrong so my mum had to push for a tilt table test. When this proved positive, I was referred to the cardiac arrhythmia clinic where I was given beta-blockers. These didn't help much, so I went through the process of being given a different drug each time I saw the cardiologist. As a last resort they coupled my beta-blockers with Midodrine: so far this combination seems to work most of the time.
While all this was happening I had exams to sit at school. I passed all my standard grades with credit but my guidance teacher told me it would be better for me if I left school and started work. I stayed on, but the school kept up the pressure to leave as they did not know what to do with me.
Disregarding their advice, I signed up for the World Challenge. I went with a group of people from the top 3 years of the school to Tanzania where I worked in an AIDS orphanage, trekked through mountains and went on safari. My proudest moment was climbing Mount Meru, the second highest mountain in Africa – even though I didn’t make the true summit as altitude and syncope don’t seem to mix well! For the climb, I had a guide who made sure I was safe, but I carried my own equipment like everyone else on the team. After Meru we went on safari in Serengeti National Park where I celebrated my 18th birthday.
When I finally left school I was told I wouldn’t be able to go to university. I went to a technical college instead and studied for an HNC in biomedical sciences. The senior lecturer wrote an excellent reference and I was able to apply to university to study biology. I had a real low moment when I was refused biology with a teaching degree, despite having the proper grades, but I was accepted to study toxicology at Napier University in Edinburgh. After meeting the lecturers and university staff, I knew I would be happy there.
A month before I was due to leave for university my sister found me unconscious on the kitchen floor. I appeared not to be breathing and had turned blue. She and my mum phoned for an ambulance. In the ambulance and at the hospital they could not get a normal ECG from me. My blood pressure was low and I was kept in until my heart went back to normal. Although this was scary, I was 18 and had different priorities! A week later, I was in Donnington at the download music festival with a group of friends. We had a great weekend listening to the music, shopping and just being part of the amazing atmosphere of the arenas. I met my favourite band and completely forgot about my syncope!
I was offered direct entry to second year, but I refused as I didn’t want to put too much pressure on myself. Instead I started off in first year, and after a few teething problems I settled right in. The student support team was brilliant: they made sure all the staff knew I could collapse and what to do if and when it happened. I provided them with literature from STARS, which they used to write my disability statement.
Currently, I’m in the second year of my degree and I recently passed my qualifying exam for teaching dance. I work part time in a local nightclub and the management team are very supportive. I had a rather horrible attack at work and I was admitted to hospital to recover. I still pass out maybe once or twice a week but it’s not as bad as it used to be and my cardiologist is happy with how things are progressing. I am reasonably independent, although I wear a Medic Alert pendant when I’m out and about. There is talk of fitting me with a pacemaker when I’m older but surgery is a daunting prospect and I’m quite happy plodding along with my tablets for now!