A PoTS Epidemic?

I have just started to watch the webinar for GP's by the London Bridge Cardiovascular Clinic - "The Impact of COVID on the Cardiovascular System". It's really good but I am trying to cognitively pace so I will bring the good bits to you piecemeal.

Most of you will know that last September I was diagnosed with Postural Orthostatic Tachycardia Syndrome or POTS, by my cardiac consultant Dr Ramzi Khamis. This was a result of a COVID-19 infection.

Whilst still under Ramzi's care for the Microvascular Angina I had also developed I sought the opinion of Dr Nicholas Gall, a cardiologist who specialises in PoTS, at King's College Hospital in the UK.

He is the first person to present at this webinar and his talk is "COVID-19 and POTS".

"There could be potentially out there 38,000 people with Post COVID POTS"

Definition of POTS

Who gets POTS?

POTS normally causes heart and lung symptoms in young women and before the pandemic started the number 1 cause was Glandular Fever ( Epstein Barr Virus/ Mono). { I find this especially interesting as is the POTS a result of EBV reactivation or it it due to the SARS-CoV-2 virus itself?}

It is thought that there is a dysregulation in the nerves controlling the cardiovascular and respiratory system which brings on a failure for our bodies to move blood upwards from our legs and abdomen to our hearts and brains. The body registers that there is not enough blood "up top" as it were and our hearts beat faster to try to get the blood up there. Sometimes its just not enough and when we are standing we get brain fog, profound dizziness or eventually we faint. {The only sure way our body knows to get blood back to the brain by making us horizontal }.

Why does POTS occur?

There are a few theories as to why POTS occurs:

  1. Insufficient blood volume in the system

  2. Failure of the vessels in the legs and abdomen to constrict and push the blood upwards

  3. Blood going to the wrong place - legs and abdomen instead of heart and brain

  4. An inappropriate cardiac response.

What are the Symptoms of POTS?

POTS is defined as a chronic condition so the symptoms must be present for 3 or more months.

I just counted I have 26 of these clinical features out of 30. If you haven't had post Covid POTS diagnosed yet but are having really weird symptoms as above it's worth chatting with your GP. Please be aware you may not fit the POTS criteria as above (a rise of 30 bpm in heart rate on standing) BUT if you have all these symptoms it may be ORTHOSTATIC INTOLERANCE ( your body doesn't like being upright either but you just don't get that 30 bpm rise). You would still benefit from treatment.

How do you test for POTS?

In a GP surgery you can do a STAND TEST - You lie down and have a blood pressure (BP) and heart rate (HR) taken then you stand up and have the BP and HR taken at one minute intervals for at least 3 minutes (10 minutes is best). The HR should remain with a rise of 30 bpm for that duration - a few dips are allowed. BP should remain stable.

A TILT TABLE TEST is the formal test but not necessary for diagnosis.

The Treatment of POTS

There is no cure but there are therapies that help.

Drug treatments-

Associated symptoms with POTS

POTS is not just about your heart rate increasing on standing and people feeling a bit dizzy.

Because it affects the whole autonomic nervous system there are many other symptoms:

THESE symptoms are what your GP and your cardiologist will need education on. Unfortunately there are literally only a handful of POTS specialists in the UK. They are listed on the POTS UK website and I would strongly recommend pushing for a referral to one once you have a diagnosis.

I myself has dysfunctional breathing, constipation, a neuropathic bladder and have just started medication for Mast Cell Activation Syndrome. I know of another doctor with POTS whose life is completely debilitated by migraines.


Q&A with GP's

What do you think causes (the aetiology) of POTS?

It is more and more likely that POTS is caused by autoimmunity. Increasingly researchers are finding autoantibodies in the blood of POTS patients. These autoantibodies are probably directed towards the small nerve fibres in the autonomic nervous system and cause a small fibre neuropathy. The small fibres are responsible for the constriction of blood vessels.

This neuropathy would also explain the symptoms seen with the bladder. Nerves in the body control how the bladder stores or empties urine, and problems with these nerves cause overactive bladder (OAB), incontinence, and underactive bladder (UAB) or obstructive bladder, in which the flow of urine is blocked. It is akin to a diabetic bladder.

A similar picture can be seen with the gut with nausea, reflux and constipation. If it is autoimmune would immunosuppressant drugs not work?

There has been no studies into this as far as Dr Gall was aware. There are several case reports where POTS patients were given immunosuppresents and he is aware of a colleague who is giving POTS patients hydroxychloroquine currently.

He said there are not enough doctors interested in POTS and very little funding for research in the UK.

Is there a link between POTS with hypermobility and Mast Cell Activation Syndrome?

Most POTS patients are thought to be hyper mobile but not many doctors test for this.

He feels there is a real link between MCAS and POTS. There are excessive allergies in patients with POTS. He feels it is likely that the small nerve fibres feed to histamine containing areas in the body. Symptoms improve on antihistamines.

231 views0 comments

Recent Posts

See All