Sam

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.

I was treated as a fraud

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.

I still have fluctuating symptoms

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.