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By the third day my faints had evolved into what looked like spontaneously falling asleep. People joked that I had become narcoleptic. It got so bad that I was almost ‘falling asleep’ every 15 minutes: these episodes only tended to last for a few seconds and when I came round I thought I felt relatively normal.
As soon as I arrived home my parents took me to A & E, where I continued to have these unexplained episodes in front of nurses and doctors who appeared clueless. I had a CAT scan that obviously showed nothing, so I was told to go home and just sleep it off.
Back home I was now unable to feed myself. I could not walk up the stairs but had to crawl. I only took one day off school and although I probably looked normal to everyone around me, I felt anything but. The only way I can describe it is that I was numb to the world around me. My head felt like it was in another place and I had next to no concentration.
Sometimes I was in the common room talking to people but then would suddenly have to lie down on the floor as ‘it’ went through my body. Once when this happened I was just laughed at, with people saying I was faking it. This episode gradually got worse, I could not walk and was violently sick – which had not occurred during an episode before. I was even accused of having an eating disorder, which is particularly ridiculous as I have such a large appetite!
As the ‘good rest’ that had been recommended had clearly not returned me to full health, I was referred to a neurologist who suggest I had an EEG, ECG, MRI scan and multiple hormone blood tests. Eventually, when all the results had been seen, he concluded that I had had a tumour on my pituitary gland that had haemorrhaged and that it should clear up naturally over a sixth month period.
The feeling of sickness seemed to recur many times. In fact, for a couple of months I had it permanently, which made it incredibly challenging to get into school. By the end I only went in for my lessons. This meant my mum had to put everything on hold to ensure I got into school: I could not cope with travelling on the school coach and just had to go straight home to spend even more time lying on my bed.
My sickness feeling reached its peak just before I had an attack of a different form. I was no longer ‘spontaneously falling asleep’ but I went into a semi-conscious state. I had to lie on the floor and my body seized up so I could not move. It lasted about 45 minutes, the longest I have ever been in this state.
Despite this, I managed to take all of my ‘A’ level exams as I was lucky to have three weeks without any episodes. However, the day after my exams finished I woke up feeling incredibly hungover – quite an achievement, considering I hadn’t touched alcohol due to the state of my health. I went shopping in Windsor with my mum and I just remember walking around feeling completely detached from my surroundings. I had a severe attack in Marks and Spencer, where I was in a semi conscious state for about 20 minutes. My body seized up and my eyes started to stream, even though I was not literally crying. After I came round I had to be pushed back to the car in a wheelchair, as I was unable to walk. Episodes like this had also occurred several times in school.
By this time my confidence had been severely knocked. I was scared to go out in case I had an attack and was sick. However, I still managed to go to my prom the next day, even though I felt incredibly sick and nervous. I was, and still am, really lucky to have an incredibly understanding and supportive group of friends.
The episodes continued to happen for two weeks over my summer holiday. This quickly eliminated any question of it being stress-related, as all I did for two weeks was relax! Once I was carried out of a restaurant. I probably just looked drunk to most people: little did they know.
After these episodes I went back to the doctor, asking if there was anything else that could be done. He just suggested that I had another MRI and EEG. He made it quite clear he thought I was just having panic attacks.
After this appointment I felt my health gradually improved and the rest of the summer was clear of episodes. However, the week before I started University I collapsed again while out shopping, which made me a little paranoid at university. Simple things that would go unnoticed to most people became a challenge for me. I hated being trapped in a long row of people in the lecture theatre, just in case I fainted.
I had several other attacks, even on Christmas Eve while sitting in church. I was also sick a couple of times. It appeared impossible to know how my body was going to react to each incident.
It was my dad who read an article on vasovagal syncope in The Times, after which my mum contacted STARS. Jenni at STARS was the first sympathetic voice that we had spoken to since this all started and recommended me to be referred to a Professor in London who is a world authority on the autonomic system. After undergoing many tests including the tilt test, it was just concluded that I had vasovagal syncope. I was told to focus on increasing my blood pressure through exercise and increasing my salt intake, which was very important as it was low anyway and I’m tall at 5’9’’. I was also told I could no longer drive, and as I had been commuting to university I had to move into halls of residence.
This move appeared to agree with me as I had no episodes for four months. However, one night when I was out in my student union I collapsed and paramedics were called. It took a lot of explaining and form-signing to avoid being taken to hospital and to assure them that I was OK. I had several other episodes, but continued with my studies and got through my exams.
However, throughout the summer of 2006 my episodes appeared to becoming more frequent and the intense feeling of sickness returned. I was admitted to the National Hospital for Neurology where I had several others tests.
A few weeks later when the results came back, it was finally concluded that I had Postural Tachycardia Syndrome (POTS). I was also recommended to see a cognitive behavioural psychotherapist, as my self-esteem had been so severely knocked. This turned out to be a great help and she really returned me to the belief that I would be able to lead a next-to-normal life.
In September 06 I was put on the drug Midodrine and within two weeks I began to feel like a whole new person. I moved back into halls at university and was able to go out every week, which was just unheard of in my first year. I also got myself a job working for the university catering department, which was an achievement I was most proud of! I had no attacks for five months but then had a couple in lectures. I believe these were just from exhaustion and a reminder that I had to take more care of myself compared with my friends.
Since then I have had a few more attacks and will probably continue to do so for some time. Although they do exhaust me, they are nowhere near as bad or intense as they used to be, showing how much Midodrine has improved my quality of life.
This summer I have done work experience in London, which meant I had to travel by myself on the train and buses. I even managed to go shopping alone down Oxford Street! I then went on to get a full-time job in Windsor and am looking forward to my final year of University!
Being diagnosed with POTS has put pressure on aspects of my life which other people wouldn’t even notice. However, it has also made me more determined to achieve things and experience as much as possible, so after university I plan to go travelling. Nothing has been worse than not being able to do anything, so although there are bad days, the good days are fantastic as all this has taught me to appreciate good health and not take anything for granted!
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