Today is POTS Awareness Day and it certainly needs an awareness day as most people haven’t heard of it! POTS stands for Postural Orthostatic Tachycardia Syndrome, which is a bit of a mouthful, but in its most basic form means that when you stand up your heart rate goes too high. This can lead to fainting. It was fainting in front of the headmaster at a school open day for my daughter that eventually led to my diagnosis (how embarrassing!). However, in reality, living with POTS Syndrome affects much more than your ability to stand upright.
Autonomic Nervous System
POTS actually affects your entire autonomic nervous system. That is the system that controls everything that your body does without you realising. This includes breathing, heart rate, blood pressure, circulation, sleeping, temperature control, digestion, plus many more.
How common is POTS Syndrome?
POTS is more common than MS and Parkinsons Disease, but because it wasn’t discovered until 1993, not many people know about it and not much funding has been assigned to it
Currently there is no cure for POTS. The treatment is to treat each of the individual symptoms rather than the actual cause.
Getting diagnosed with POTS.
For me, and for many others, getting diagnosed with POTS can be an upward battle. My GP noticed that my heart rate shot up when I stood up, but she suspected that it was her blood pressure machine that was at fault rather than my body and didn’t even question it. After many, many years of doctors and hospital appointments and several misdiagnoses, I finally took a table tilt test which is the test that can show whether someone has POTS or not. The table tilt test actually showed I had POTS, but my cardiologist wasn’t looking for that and he diagnosed me with a common blood pressure issue. It was only because I had recently heard of POTS and thought my symptoms matched that I asked for a call with my cardiologist and spent 20 minutes trying to convince him to look at my test results again. My persistence paid off and later that afternoon, he called me to tell me that I did, in fact, have the condition. If it hadn’t been for that, I’m pretty sure I would still be none the wiser. I then had another year of tests and was eventually formally diagnosed with POTS and then with Ehlers Danlos syndrome (see https://craftybynature.biz/ehlers-danlos-syndrome/)
Living with POTS Syndrome
POTS has deeply affected my life. It has had an effect on my career, my relationships and on my day-to-day life. I suffer with chronic migraine, insomnia, digestive issues, joint problems, chronic pain, breathing problems and sheer exhaustion most days. However, it has made me reassess what is important to me and I know make sure I focus on those things and also on my own self care. I’m managing my health issues with meditation, good diet, gentle exercise and lots of fresh air. I’ve also launched my own business in natural skincare. I think setting up a business provides hope for people with chronic health conditions and so I have also set up a supportive and friendly group for people in a similar position called Entrepreneurs against the Odds (www.facebook.com/entrepreneurs_against_the_odds)
If you would like any more information on POTS, please visit the POTS UK website www.potsuk.org