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So I left for University in Newcastle, and when the problem didn’t seem to settle down I again saw a GP. Fortunately she’d just heard of a “Blackouts and Falls Clinic, run by an eminent Professor. I had multiple tests – MRI brain scan, echocardiogram, ECG, 24-hour ECG tape, 24-hour BP, tilt test etc. It was embarrassing being the only person under 60 in the waiting room but I was glad it was at least being investigated!
I was treated for postural hypotension with fludrocortisone, but not before I’d tried all the conservative measures first – drinking 2-3 litres of water daily with 6 cups of coffee, as much salt as I could eat, wearing strong support tights at all times and no alcohol…none of which was any mean feat for an 18 year old at university!
The problem improved a little, though there were always peaks and troughs. I finished my English degree and decided to train to be a nurse: not a conventional career move, but I have no regrets! However, as I progressed through the course in Liverpool, I had a lot of problems as the shift-working – especially the night shifts – seemed to exacerbate my symptoms.
I was referred to a pharmacology team at Liverpool, where a consultant said, “I have no interest in your condition” (his exact words). I was devastated that my dream of becoming a nurse might be over, simply because a medical professional couldn’t help me and refused to refer me to someone who could. He indicated on many occasions that he thought it was just “stress” and that I was “highly strung”. I couldn’t make him see that the cause of my stress was simply that I couldn’t stop falling over or going very faint in specific circumstances, such as standing up, yawning or shouting. There are many other strange triggers such as take-off and landing on air flights and blowing up balloons, but these are easier to avoid and don’t affect my daily life!
One traumatic day I was working on coronary care and ended up in A&E myself, where the doctor gave me drugs for vertigo. After this I finally managed to get a referral to the Cardiothoracic Centre in Liverpool. The consultant here took my condition more seriously, reassuring me it was a medical problem and not one I was making up. He repeated some tests, tried me very briefly on a low dose of midodrine, and then inserted an arterial line in my arm for a few hours to prove that it was my heart rate rather than my blood pressure that was causing the main problem. This was embarrassing as CTC was my base hospital as a student nurse, so I went from following these doctors and nurses around to being on the receiving end of their care! But the end result was that he put me on a beta-blocker and things did improve so that I could qualify as a nurse.
Four years later I am now having my hardest time yet. The beta-blockers helped but the problem never went away. I still had bad days and good days, and really acute periods as well as great weeks where it didn’t bother me too much. However, at the start of this year all got out of hand, partly due to the side effects of the beta-blockers. I was really upset at having to take time off work sick for the first time, had no consultant in Manchester and a GP who didn’t seem to know what to do. She referred me to general medicine (despite my cardiology-based history); unsurprisingly, the consultant said I had no neurological signs and had nothing really to suggest.
That is when I contacted STARS after a desperate web search for ideas. I was given the name of an appropriate consultant and finally managed to see him in May. He was very supportive and I was so grateful that he understood the impact this was having on my life – not just my job, but my ability to do hobbies or even day-to-day activities like climbing a flight of stairs. He also promised to help me enjoy my forthcoming wedding rather than just “get through” it without falling over.
I was really appreciative that it was being taken seriously after so long, and I’m pleased to say I had a wonderful wedding and honeymoon in August! I was put back on the fludrocortisone but am currently coming off it for a repeat tilt test. Although I had a good few weeks in July and August, my symptoms have deteriorated again since and I’m having problems with work again. I would just like a definite diagnosis, though I’ve been warned this may not be possible. While I am very glad the condition - whether it is postural hypotension, POTS, Vasovagal Syncope, bits of all three or something else – is not life-threatening, it does have an impact on my life and it’s hard accepting that I can’t do everything that I want to do. But I try to carry on and not let it stop me having a go!
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