STARS Patient Information
Carol’s story - High days, holidays and Pots
Rewind to December 2012, I celebrated my 50th birthday. Life at that point was normal, I was working hard as a teaching Principal, enjoying my family life and making plans. I love seeing the world so as a treat my husband and I celebrated my big birthday in Austria.
After the Christmas break I returned to work and contracted a virus. Life changed both gradually and dramatically after that.
It was a Sunday morning in January 2013; I awoke from a very restless sleep feeling very unwell. I thought ‘not another bug picked up in school.’ I was not a frequent visitor of doctors but I knew I needed to see one that day. I saw a locum GP at an out of hours clinic and so began the talk about my ‘heart rate’. He said ‘you have tracheitis but we can sort that. I am more worried about your heart rate and if I were your GP I would want you to see a cardiologist.’
I took a week off work, the virus settled and with it my heart rate, or so I thought. I followed doctor’s orders and went for a follow up visit to my GP. The ECG was normal but he referred me to cardiology. I didn’t dwell too much on this so I resumed my busy life knowing that the waiting lists were very long.
I had listened to friends talk about natural changes from 50 onwards and so when I began to feel exhausted, run down and my heart would beat like a slug, then a train, I dismissed any worry and put it down to my age. As winter turned to spring I felt worse. I would pick up slightly at the weekend and be exhausted after class on Monday and wonder how I would make it through to Friday.
Eventually I was sent to a cardiology clinic and fitted with a 24 hour monitor. I felt ok whilst wearing it and returned it with no symptoms listed in the accompanying diary. A couple of weeks later I took a call at work from the GP. He explained that I needed to have a BNP blood test (A special test to diagnose heart failure). At this point my husband and I began to worry. Did a professional actually think I may have heart failure. Thankfully the test was normal and I went back to thinking that my increasing symptoms were all age related.
Summer holidays arrived and I was looking forward to a good rest. I noticed that even with rest I felt no better; my heart was jumping about and I was fatigued and light headed. I knew that there was definitely something wrong with me. My husband, son and I were looking forward to attending a Springsteen concert in Belfast in July. That morning I had a heart scan and was told that everything looked normal and that the cardiologist would decide whether to see me or not. Once again I thought these symptoms are all in my head. So off we went to enjoy a lovely concert.
Summer was coming to a close and I was no better, I began to sit about and wonder how I was going to find the energy for a new school year. I had a trip to Belfast planned with some teacher friends. I felt alright on the day of 21stAugust 2013. I certainly had felt a lot worse. We had a lovely day and went to a restaurant for a meal. I remember sitting eating a starter, I put my knife and fork down to chat and I felt that the life completely left me. My friends describe how they thought I had died; I remained upright, unconscious and white with blue lips. I remember hearing my friend call my name as if from a distance, I couldn’t see or work out where I was. Eventually I could see and wondered why I had fallen asleep in a restaurant! The paramedics arrived and I was taken by ambulance to Belfast. I spent the night in A and E, I was in shock, nauseous, trembling and freezing cold. My poor husband had travelled 70 miles in a daze and spent the night by my side. My traumatised friends were in a local hotel.
I was kept in the cardiology ward for 3 days and given a series of tests. Once again these were normal. On the third day I was given a tilt table test. I almost passed out during the test and was given a positive diagnosis of neurocardiogenic syncope. I was told about extra water, extra salt and discharged. At this point I was baffled and bewildered.
School started without me as I tried to get back on my feet. I felt so out of synch inside. I was dizzy, light headed, sweating, freezing, filling up quickly and bloated. I didn’t trust myself to go for a walk alone, I didn’t drive. I thought the high days and holidays were gone for good. The more I sat about the worse I felt.
One day I looked out at a beautiful September morning and thought I am going to start walking around my garden, 10 times, 20 times and so on and if I faint then someone will see me. So I did, I walked and lay to recover then started again. The farmer cut the barley from a field around our house so I started to walk longer distances around the field. I felt better as I exercised. By the end of October I trusted myself to drive again. I was well for whole days and parts of days.
I attended cardiology appointments and once again, thankfully, all the usual heart tests were normal. I really wanted to return to work so I sought support from occupational health and made plans to give it a go. I started work in May 2014 and very quickly realised that whilst I could keep myself well for periods of time at home, back in the real world I once again felt weak, exhausted and my heart was jumping all over the place. I don’t give up easily so I looked forward to the summer break. I didn’t trust myself to fly so we took the ferry and had a lovely break in Wales.
I returned to work in September 2014 and once again the symptoms were there with a vengeance. I worked and slept and that was the extent of my life. I kept going from break to break. By Christmas I was exhausted and warding off faints regularly. I phoned Jenni at STARS and chatted to her. She felt that I had a lot more going on than the neurocardiogenic syncope and advised that I should try to see a specialist in England. I was too tired to contemplate this, but the seeds were sown and as I rested over Christmas I realised that I was going to have to give up a much loved career and if so I owed it to myself to find out why.
I looked at the lists of professionals on the STARS website and the name I kept coming back to was Professor Christopher Mathias. I organised an appointment to see him in London in March. I emailed Jenni to tell her and she was 100% sure that Professor Mathias was the right person for me. She also mentioned that she knew another lady with similar symptoms from Northern Ireland and that she had been to Professor Mathias. I asked Jenni if it would be possible to email this lady. I felt it would be amazing to meet someone who would have total empathy with the things my body was doing.
I returned to work. By the third week of January I could hardly function. I was leaving work early, the weekends were not providing enough respite so I decided to take sick leave until my appointment in March.
So in March this year my husband and I took the short flight to London, we made a little mini break out of it. I met Professor Mathias and I felt that for the first time since January 2012 I was being listened to by someone who completely understood every word I said, every symptom I expressed. That experience is beyond valuable. Professor Mathias explained the range of conditions he felt I had. He explained that I would need to complete a range of tests.
The tests were scheduled for two days in May in London. Four days after completing the tests Professor Mathias spoke to me by phone at home. I have autonomic dysfunction, vascular pooling, constitutional low blood pressure, Postural Orthostatic Tachycardia, Joint Hypermobility Syndrome and all in addition to neurocardiogenic syncope. The diagnosis, whilst not providing a cure, has empowered me in my approach to doctors. I no longer ever feel that anything is to do with my head, or my age. My GP is lovely but admits to no knowledge of any of these disorders. I understand them so I can ask for what I need. I don’t like the conditions but I accept them. I no longer feel that I have to keep fighting with myself to maintain my old life. I need to fight for support and fight to live as best as I can in my new life.
I called this piece ‘High days and holidays’ for a reason. Despite these debilitating and life changing conditions there is a beautiful world out there. So many positive things have happened to me. I met Jenni’s other lady and we enjoy each other’s company and texts. I met Professor Mathias and his team and I enjoy chatting to Jenni. My family and friends have been there for me 100%. I keep myself fit and active on my good days and use my energy for the things I enjoy. I rest and give in when my body makes me. I hope the good times keep on coming!