Postural Tachycardia Syndrome
Last updated: December 2021
I wanted to talk about a little known or talked about a condition that I suspect I've had since my lupus symptoms reared their ugly head - Postural tachycardia syndrome, or POTS for short, is a condition that affects blood flow in the body.
To be honest with you, I had never even heard of it until a friend of mine who has myalgic encephalomyelitis was diagnosed with it.
We share similar symptoms even though we have different health conditions, and our main one is an elevated heart rate.
My heart symptoms with lupus
At the onset of my lupus symptoms, I noticed I would get a lot of heart palpitations and feel like my heart was racing. It was scary when it first happened, and it gave me a lot of anxiety. I had numerous tests done, and they couldn't find any answers, which was reassuring but not very helpful.
I became used to this, and it became normal for me. On top of this, I would experience nausea, feeling thirsty, especially after any kind of exertion, hypoglycemia, adrenaline surges, dizziness, especially when standing, and my temperature would fluctuate a lot.
During my pregnancy, these symptoms really heightened, and my blood pressure became very low, and I'd start to faint if I lay down. It was really scary.
Over the years, I've just put it all down to lupus. However, after seeing my friend getting referred to a specialist POTS consultant in London, it's made me think that perhaps it's time I get investigated adequately for this condition!
What is POTS?
POTS causes an abnormal heart rate that occurs after sitting up or standing. It involves a failure of the autonomic nervous system, which controls heart rate, blood pressure, digestion, production of body fluids such as tears and saliva, etc. All of the things that we don't consciously control.
I have spent a great deal of time researching POTS as I have many of the classic symptoms, and I was interested to see that it can be associated as a secondary condition to illnesses such as diabetes, Lyme disease, and, of course, autoimmune diseases such as lupus. There also seems to be a connection with the Epstein Barr virus.
Common symptoms of POTS
High/low blood pressure
- Feeling thirsty
- Poor temperature regulation
- Fast or low heart rate
- Exercise intolerance
POTS testing and treatment
The standard test used to determine if you have POTS is a tilt table test where your blood pressure and heart rate are measured as you change position. Medications help control the condition, such as beta-blockers and salt tablets if symptoms are severe.
Tips for dealing with POTS
- Low blood volume is a culprit, so it's vital that drinking approximately 2 liters of water a day will help.
- Eating a healthy balanced diet is important.
- Small frequent meals are better than big meals, which the body will struggle to digest.
- Stay away from hot baths and showers.
- Keep a diary of your heart rate and blood pressure.
I'm now waiting for a referral to a POTS specialist, so I will update you with more news as I have it.
Have there been things you have learned along your lupus journey that you wish had been explained to you by a healthcare provider earlier?