The first time I remember passing out I was thirteen. My father has always passed out easily and it started happening to me occasionally too. When I was fifteen, I started getting chest pains and feeling breathless while playing football. My GP diagnosed exercise induced asthma and gave me an inhaler. It didn’t help. I was a regular visitor to the doctor and casualty as a teenager, usually with sport related injuries. Despite the injuries and chest pains I played sport three or four times a week. I was a happy, seemingly healthy guy.
When I left home and became a student at 19, my lifestyle changed. I stopped exercising, and was out at parties or nightclubs several nights a week. It was a lot of fun but I was treating my body terribly and I soon started to have problems, with headaches, tiredness, and joint pain. My GP said I needed to change my lifestyle. It made sense, but I was enjoying myself too much to follow his advice.
My symptoms became more frequent over the next year. I managed to keep functioning, but at Christmas in 1994 I got a chest infection. I thought I was getting better, but a week later while standing in a queue for a nightclub I felt so ill I thought I was going to collapse. A blood test showed ‘viral activity’. My GP thought I had glandular fever and advised two weeks bed rest. The first few days I felt fine, but then I started getting new problems. My heart frequently started racing, which was followed by a feeling of exhaustion. My GP thought panic attacks might be causing my very fast heart rate. But it only occurred after exercise or food so that didn’t seem to make sense.
I was referred to the local hospital, but by the day of the appointment my health had deteriorated even more. A blood test gave a normal result which was good, but the doctor found my blood pressure was very low. We had a surprisingly brief chat, then he diagnosed me with M.E. (Chronic Fatigue Syndrome). He commented ‘We could do lots of expensive tests, but there’s no point because it is M.E.’. The treatment he recommended was three more months of bed rest.
I didn’t know what to do then. I didn’t agree with my diagnosis or treatment and had lots of weird symptoms which worried me: my feet often turned purple, I had a constant headache, chest pains, and my heart pounded and raced a lot. Endless other theories were suggested: myocarditis, hepatitis, hypothyroidism, hypochondria, ‘You have a hole in your aura’! I took a list of questions to every hospital appointment, but they never had any answers and just kept prescribing more bed rest.
Months passed with no improvement. I felt dreadful every day, as well as confused and angry. But then I read a newspaper article that changed everything. It was about a girl in America who’d been diagnosed with M.E. but was later found to have Postural Orthostatic Tachycardia Syndrome (POTS), meaning a rapid heart beat while standing. People with POTS also experience fainting, fatigue, nausea, headaches, all the problems I’d been having.
As I had a history of passing out easily POTS was the first explanation I’d heard that made sense and I was immediately convinced I had it. The girl I had read about was being treated with medications to raise her blood pressure and lower her heart rate and seemed to be living normally again. The article said it was important to keep as active as possible and spend time upright, but on the advice of doctors I’d spent nine months lying in bed.
Bed rest has a significant effect on the human body. In one study cardiac output had reduced 23% after 10 days, muscle strength reduced 26% after 5 weeks, and spine bone mass had reduced 3% after 12 weeks. (ref).
POTS can be tested for using a ‘tilt-table’, which monitors a person’s cardiovascular response to moving from a horizontal to vertical position. I went to see my GP, but he’d never heard of POTS or the test. I found there were only three places in the UK at the time that had the equipment for tilt testing, and they all had a long waiting list.
I had to wait eight months for a tilt-table test. The whole time I was determinedly, stubbornly, pig headedly convinced I had POTS. When the day of the test finally arrived it felt like my future and my sanity were on the line, …..but I was right. 🙂
My blood pressure was very low at the start of the test. It dropped sharply as the tilt-table lifted and my heart rate doubled. I felt ill throughout the test. My heart rate reached 130 bpm and I passed out after 12 minutes. It felt like good news on the day because my diagnosis changed to a condition that was treatable instead of one that wasn’t. I thought my life was about to start again. However the test had shown a bad malfunction in my body’s cardiovascular system, which was far from good news.