Sam: I won't let it stop me!
I had a normal, healthy childhood. At 23 (1997) whilst doing my PhD, I started fainting (usually due to a postural change, particularly getting out of bed in the morning, or heat). These were sudden attacks and I recovered almost immediately. Gradually over the next few years, it took longer to recover and symptoms were always worse when I had the beginnings of a cold. At 27 I had a cold that it took me 3 weeks to recover from and after returning to work for only a month, came down with another cold that kept me off work for several months, then only working part-time for the next few months. I was diagnosed with Chronic Fatigue Syndrome, but no one would address my low blood pressure that I was convinced was playing a huge role in my symptoms. It took 2 years and included one relapse, but slowly my symptoms improved. At 31 I had my first child and whilst pregnant my symptoms were a lot worse. I used grade II thigh length compression stockings, but eventually I was too ill to work at all.
It was not until we were seen privately (10 years after my first symptoms) that anyone took me seriously (I had been asking for a tilt-table test for years), and even then I was treated as a fraud until the tilt-table proved otherwise. I was prescribed Midodrine, which helps a lot, but is by no means a cure.
Getting the POTS diagnosis was a huge relief, just being taken seriously made a huge difference. Pregnancy and breastfeeding were incredibly challenging, as my symptoms were worse and I couldn’t take my medication, but it didn’t stop me having the 3 children I had always wanted.
With medication, I still have fluctuating symptoms, but I am lucky to have a very supportive husband (with understanding employers) and friends around me. When I do suffer a ‘fainting’ episode, I usually have to spend the rest of the day at least semi-reclined to recover.
Once my youngest starts school, I have every intention of returning to part-time work (part-time for the benefit of my children, not because of my POTS) and I am optimistic about the future, though accept I may always be slightly compromised by my health.
In the last few months, I found that I needed higher and higher doses of Midodrine and after a little research requested Propranolol in addition. I now take 10mg Propranolol 3 times a day and have reduced my Midodrine dose to 10mg each morning. I have also been prescribed the combined pill as oestrogen is believed to be beneficial too – it is early days with the oestrogen, but I cannot recommend the Propranolol highly enough – it has made a huge difference to me.