L i z 's S t o r y
"I was massively relieved that a specialist was confirming I wasn't going mad"
My name is Liz, I'm 33 and I'm married and live with my husband Adam and 2 cats Alys and Moe. My story starts back in 2005. I started feeling a bit faint on and off but brushed it off. I took up jogging as I started doing the Race for Life events with my mum. After a few years my legs started to hurt a lot and I stopped running suddenly.
Within a few months I started to get dizzy, palpitations and had fainted a few times, the first being at the Royal Opera House because at the time my job was as a PA for a music agency looking after opera singers and I got free standing tickets for all the operas.
I saw my GP who said it could be the heat (it was the summer at the time), my age, hormones but it was nothing serious. He put me on a calcium channel blocker and referred me to my local hospital (Hammersmith Hospital) to see a cardiologist. This was my first bad experience. Prior to seeing the cardiologist I had looked up what calcium channels were for and a website mentioned Inappropriate Sinus Tachycardia. I thought this was it but happened to stumble on a forum discussing IST and someone mentioned POTS. This lovely lady started messaging me about what Pots was as she suffers with it herself. Long story short, we're still friends and she directed me to a website with info on POTS. That was my lightbulb moment. It listed every single symptom I had and more that I hadn't even realised were part of it like sweating, brain fog, headaches etc.
I went to see this cardiologist armed with info on POTS and I showed him and his response was that it doesn't exist, I was an anxious person and that I didn't have IST. He discharged me and I was in tears. I still have his letter in my notes which I keep because I want to prove how bad Drs can be, even cardiologists! Maybe one day I'll find him and message him and send him some Pots info!!
So after that I was back and forth to my GP with the Pots info and they too dismissed it and wanted me to see a psychologist!! I had exhausted all options and by this point I'd been off work 6 months as I had terrible headaches, felt dizzy and faint all the time and my heart was racing all day every day.
"I had PoTS!!"
I started to doubt myself but it was when my friend mentioned that if I was willing to pay to go privately there was a Pots specialist in London (where I lived) that could at least test me and see if it was Pots. That man was the amazing Prof Mathias. I saw him at the Lindo Wing at St Mary's hospital with my mum. I was so nervous, but he was so lovely I was put at ease straight away. He took my medical history, assessed my blood pressure and heart rate from sitting to standing and said 'Miss Owen you almost certainly have Pots, you also have Ehlers Danlos Syndrome by the way you're standing and look physically'. I was gobsmacked. On one hand I was massively relieved that a specialist was confirming I wasn't going mad, was anxious or otherwise. I had Pots!! But on the other hand he was throwing a curve ball with another illness I might have too!
The plan was to do autonomic testing which unneeded but ended up costing thousands of pounds. And he also referred me on the NHS to see Prof Grahame at UCLH for EDS testing. After just a few months, I'd had all the tests, been confirmed as having POTS, vasovagal syncope and got my EDS diagnosis (type 3 or hEDS as it's now called). I was put on a low dose of Midodrine for my Pots and told to increase my water intake and have salt by the bucket load! Over several months he increased my Midodrine dose and I started to feel better. I couldn't afford to carry on seeing Prof Mathias privately (these days he's only private) but he referred me to his clinic at St Mary's on the NHS. This was in 2008/9. After a while the autonomic clinic at NHNN, Queen Square opened up so I got referred there and have ever since been under the care of Dr Ingle.
I have been on Midodrine for 9 years now and found my Pots has not improved so I decided to come off it because it's short acting I had no withdrawal symptoms. I'm now on Ivabradine through a cardiologist at Papworth hospital, which is very close to where I live. It's massively helped my palpitations and brought my heart rate down from the hundreds to 75-85bpm.
- Liz
"We dated for 5 years and got married in March this year"
I had to give up my job in London in 2011 and move back with my parents and it was tough admitting defeat to Pots and EDS. By this point I had been diagnosed with other co-morbidities of EDS and established my Pots was secondary and caused by my EDS. But that's a whole other story. I needed to rest, I had had a total of 1 1/2 years off work and I knew my body was done, I was only 28! Moving back was the best thing I ever did. I had my parents to help me out, I didn't have the stresses of living in London like money, rent, transport, job etc...
My new GP was amazing and although had no knowledge of POTS and EDS they did their homework and made referrals where necessary. After a few months of being at home I was very contemplative wondering what my life had become and how the hell I would move on. I resorted to online dating thinking 'who on Earth would want a chronically ill girl who didn't go out much and had no prospects'. I was so wrong. After a few sleazy guys messaging me the usual drivel, I had a guy say 'Am I old enough?' He was 1 1/2 years younger than me. We got chatting and over months we grew close and eventually met up. We dated for 5 years and moved in together in 2014 and got married in March this year (2017). We are even hoping to have kids soon!
"I never dreamed it would end up this way"
How different my life is and how I never dreamed it would end up this way, with a loving husband who cares about me so much but doesn't see my illnesses as an issue in any way.
I'm doing a separate story about what it was like to get married and put up with my Pots going mental! But at the moment I use a powered wheelchair as I faint so easily standing up. I still find hospital's, Drs, people and everyone I meet are clueless about Pots. I recently had an operation and they kept me in recovery for hours because my heart rate spiked due to the adrenaline used in the operation. I told them it would happen but they didn't believe me and didn't give me any pre-op fluids despite that I'd been nil by mouth for 13 hours and no fluids for 6 hours as my op got delayed!
I don't know anyone who has an easy ride with Pots or treatment and also getting Drs to understand it. We have a long way to go with awareness and I hope in the future there may be a cure!