I Understand Now

Hi, my name is Annie was I was recently diagnosed with POTS.

I never felt ‘right’ from a really young age. I always felt like my legs had run a marathon and my body literally craved laying down a lot. I thought that this was how everyone felt, so I ignored it. I also always suffered from migraine type headaches and food intolerances and always thought that the intolerances were triggering my headaches. I can remember from a very young age that standing up too quickly would make me visually black out and see stars. Again, I just thought this was normal.

I got through school and started college in 2013 and my symptoms took a turn for the worst. I remember being on the train on my morning commute and throwing up, having to leave my lectures due to either needing to run to the bathroom to be sick, or because I felt so incredibly faint. Being around everyone else was overwhelming. I couldn’t fully concentrate on my lectures because I felt awful.

I booked an appointment with my general practitioner who told me that my symptoms were asthma. He said the throwing up was due to an asthma attack and gave me an inhaler to take every morning. The symptoms continued.

I was losing a lot of weight during this time due to the constant vomiting and other gastrointestinal symptoms that I was experiencing which in turn made me weaker. My general practitioner then decided to send me for test after test to see if I had any sign of inflammation in my digestive system causing my symptoms.

During this time, I was finding it very hard to be a normal teenager and go out. I couldn’t even go to the local shopping centre without feeling faint and having hot flushes. Even if I went to my local supermarket for a weekly shopping trip with my mum, I’d end up having to wait outside due to feeling so terrible. I couldn’t bear to be around loud noises and bright lights and would get extremely irritable. In these situations, I would often have outbursts of anger.

In the end, my doctor decided that I had anxiety and placed me on a range of medication to try and help me. This wasn’t at all successful and I felt like I would never feel normal again, like I was broken. I went a few years just trying to cope but missing out on lots of things. When I turned 18, I started trying to push myself to go on nights out with friends. I couldn’t keep up with them, they’d all be drinking and I’d try to join in and I’d be the only one feeling terrible and was just known as the ‘lightweight’ who couldn’t take my drink. I stopped drinking and going out as I felt it was just ruining everything. My friends were supportive and said that I didn’t need to drink but it just didn’t feel the same.

In my early twenties, I tried to start living a normal life and going out again. I’d been gifted a smart watch by my Mum, who wanted to be able to get hold of me when necessary as I was pretty much AWOL from home. The watch had high heart rate alerts and mine would ping off quite a lot. I was still feeling terrible but ignored this as I was determined to get on with my life and have fun. I never put two and two together.

I then got out of bed one morning pretty quickly and then realised I was fainting. I shouted for help - my mum came running and realised I was seizing. This was extremely scary for both of us. She was unable to wake me up and when I came round, I didn’t understand what had happened. I went into a state of shock after and couldn’t respond to my Mum who was panicking. The whole situation was awful.

My doctor sent me for a 24 hour ECG which came back as extremely tachycardic, with my heart rate averaging 159 beats per minute! A normal heart rate should be under 100. In the meantime, I’d be at work with ridiculous cravings for salt. I ended up googling why, as the cravings were so intense but there wasn’t much online to explain it. I thought it was a quirk of mine! I had a few more heart tests done and more blood tests and my doctor referred me back to cardiology to investigate me for POTS.

Whilst waiting for my appointment I took a turn for the worst AGAIN. I was fainting and suffering from extreme temperature spikes and my heart rate at one point reached 201. Enough was enough and I went to A&E (emergency room) and the staff were shocked at my ECGs and put me in a wheelchair and got me through immediately.

I was attached to an ECG and the doctor would come over when I was laying down and then get me to sit up; my heart rate would go from 100 to 170! This happened a lot throughout the day. A Cardiologist with a special interest in POTS, who doesn’t usually come to A&E came and met with me that evening. He was so positive about finally helping me and did the lay down and standing tests. He was so kind - holding on to me to ensure I didn’t fall over! He diagnosed me with POTS after running the tests and it was like a weight had been lifted after years of misdiagnosis. There is such a lack of awareness around POTS as most have not heard of it, and there is a lack of education and understanding within much of the medical community.

I have been put on medication and am waiting to see my consultant again to make a plan. Whilst this will not cure me, it will help me. After years of suffering, I know I can get through it and understand that this is why I feel the way I do.

I will always try my best to carry on as normal, but I now accept that I need to listen to what my body tells me. If things are getting too much, I need to rest and recover. If I feel faint, I now know to sit down and consume some salt. I also know to be patient and not get frustrated with myself because I know I’m doing my best to live the most normal life I can. I still manage my office job which I really enjoy and my colleagues have all asked me what POTS is and been so helpful when I do feel bad.

Although I still miss out a lot socially, I hope that one day with more research, I’ll be able to explore new treatment routes in order to live more of a regular life. I don’t remember the last time I had a full day where I felt 100% well, but when I’m not in a flare up, I try and improve my mental health by getting in the fresh air with my dogs and enjoying a steady paced relaxed walk with them. Caring for them also helps to keep me going as I know they need me.

POTS is extremely isolating at times, but with more understanding of this horrible illness, I feel more people could really help to make someone experiencing it less alone. Annie x