So I have had a lot of messages about Positional Orthostatic Tachycardia Syndrome (POTS) since my last blog on Autoantibodies in Long Covid and the fact that these same autoantibodies are found in POTS too. It’s estimated that around a third of people with Long Covid have POTS as part of this.
The main symptoms of POTS are :
Rapid heart beat - tachycardia, palpitations
Chest pain/ discomfort
Shortness of breath
Presyncope - near fainting
Syncope - fainting
Brain fog - cognitive dysfunction
Coathanger pain - shoulder and upper chest pains
Raynaud’s syndrome - cold hands and feet
Anxiety NB - as a symptom
Peripheral neuropathy - numbness/ tingling/ pain
So if we have some, or all, of the above symptoms how can we be diagnosed? From the charity POTS UK - "Patients are usually diagnosed by a cardiologist, neurologist or medicine for the elderly consultant or paediatrician". In order to get a referral you will need to convince your GP first. This is where I hopefully come in.
To be given a diagnosis of PoTS, a person needs to have:
PoTS symptoms mostly when upright over a period of at least 3 months.
A sustained increase in heart rate of greater than 30 beats per minute within 10 minutes of standing.
Those aged 12-19 years require an increase of at least 40 beats per minute.
These criteria may not apply to those with a low heart rate when resting.
There is usually no drop in blood pressure on standing.
Today I am going to go over how to home test for POTS. I have previously done a reel on this on my IGTV. This was based on the NASA Lean Test but I have since discovered that you DO NOT need to lean against a wall when doing the test.
What you will need is a heart rate / oxygen saturation monitor and ideally a blood pressure machine.
So many people have BP machines now for home monitoring you maybe able to borrow one. They can be picked up from supermarkets/ online etc.
So the test is called the Active Stand Test. Essentially the heart rate and blood pressure are measured after resting lying down, then immediately upon standing and after 2, 5 and 10 minutes. This test may bring on symptoms of PoTS and some people may feel unwell or faint. So DO NOT do this test alone. I did mine with my daughter as I couldn’t coordinate measuring my heart rate and blood pressure at the same time. Also you need to keep upright so can’t keep moving to write down the numbers! Document on a chart with time and HR and BP recordings. You can also document any symptoms like palpitations ( feeling heart beating fast or strongly), presyncope ( feeling like you are about to faint) dizziness or nausea for example.
I have adapted the above to Dr Nick Gall ( a UK POTS specialist). He recommends 10 minutes lying down with measurements of heart rate and BP every minute for 10 minutes. HR should be your resting heart rate ( the lowest it goes to) similarly for your BP.
Then stand up. You need to be pretty organised and quickish to get that first reading standing up in. Again measure every minute for 10 minutes. Unless you feel you are going to faint (then stop).
I stopped my rate limiting medication ( beta blocker, ivrabadine) a couple of days prior to doing the test. Only do this if it is safe for you to do so. If your POTS is really bad it shouldn’t really make too much of a difference.
Make sure you do not have compression gear on either.
If your BP falls ( numbers go lower) it is unlikely you have POTS and your increase in heart rate may be due to Orthostatic Intolerance - not being able to tolerate standing. Still discuss with your GP.
You may want to do the test first thing in the morning when POTS can be worse. Or you may find another time of day is best. Play around with it. Sometimes your body behaves one day so repeat it later or another day.
I have included a you tube video from another POTS patient. https://www.youtube.com/watch?v=DiALn0HWTsc&t=5s Or you can watch my reel - but remember you don’t have to lean against a wall. I found I got a better result standing up freely.
I have written a post on POTS for more information and in references I have also included two POTS charities for more information.
The ultimate aim is for your GP to realise you have a tachycardia for a reason other than anxiety and to get a referral to cardiology for an initial diagnosis, treatment and hopefully a Tilt Table Test for confirmation.
I have been waiting for my tilt table test for over 7 months now but be reassured the simple measures in my POTS post can and do help with the symptoms.