I developed POTS within pregnancy of my youngest child. I went from being fairly active and fit, to barely being able to climb the stairs or walk out to my greenhouse almost overnight. They put it down to pregnancy hormones. After giving birth to my son it improved slightly, however, I began to get more and more exercise intolerant. By the time I moved from Scotland to Wales, 18 months after the initial onset, I started collapsing. I went to the GP with chest pain on exertion and exercise intolerance. I saw a cardiologist privately who came up with nothing more than a 'slightly leaky valve' and really did not take me seriously at all, suggesting I might be unfit.
A few months later I collapsed in the post office in the village and was taken to hospital in an ambulance. After a couple of trips of this nature they got fed up with me and decided to refer me to the cardiologist who had an interest in heart rhythm disorders. I eventually got an appointment. In the mean time I gradually got worse and worse. At this stage I could still get around and walk short distances. She recommended I undertook a stress ECG as there is a family history of heart disease in my family. I lasted 2 1/2 minutes before my heart rate increased to 170bpm and I was close to collapse. Here is where my luck turned. The cardiologist I had seen happened to go to a lecture being given by Prof Mathias on POTS. When I saw her she informed me of what it was I was likely to have. One Tilt table test later confirmed it.
My path to where I am now, is by no means smooth. Without the support of STARS and the people I have met through it, it would have been harder. The Tilt table test (TTT) I undertook did not take constant blood pressure monitoring, and there was the battle of trying to convince the medics my blood pressure was not dropping, but increasing. Over the last few years I have fort this battle. After the 24 hour ECG showed my POTS had deteriorated from the last time it had been recorded, they decided I should have another TTT to see if they could finally tie up the blood pressure issue. Eventually I got a second Tilt table test with constant BP monitoring. Within 25 seconds of becoming heads up my HR shot up to from 80 to 158 and my BP went through the roof. They finally decided that my POTS is not blood pressure related, rather heart rhythm related.
My experience living with POTS and its seeming deterioration has proved tough. I have gone through a period of 5 years from collapsing occasionally to collapsing virtually every day, sometimes a couple of times a day. I was informed there is currently not a lot else they can do for me, for the now, apart from keep on with the calcium channel blockers. I was also recently diagnosed with Ehlers-Danlos Syndrome.
I no longer can do a lot of things I used to do. I cannot run and play with the kids, I cannot shower, even bathing is tricky as getting out increases my heart rate through the roof. I have to use a wheelchair whenever I leave the house because I have no quality of life without one. I even manage to collapse coming up from the garden. I have had to give up so much.
Saying that however, I have managed to keep positive and move onto new things. I now knit, spin and sew. I paint and draw. The biggest plus side for me is I now have the chance to pursue my life-long ambition and write. I have self-published a collection of short stories. My stories are about dealing with adversity and making the most of it, just like I have done. I have another collection of short stories being released soon and I am hoping that I will finish my novel and have it released in October. I have also just recently published to Kindle.
We have brought a mobility scooter so I can go for walks with my family. I am now in the process of saving up for an electric wheelchair and a mechanism for getting it in and out of the car. Once I have this my new life will be complete.