POTS? Palpitations and Kardia interpretation

[chestnutty]

I have had palpitations off and on for years - dismissed as ectopics and not of any concern. Back in 2021, feeling pretty rubbish in the mornings particularly I found information on-line about POTS, which seemed to fit my current and historic symptoms. I monitored my BP and pulse from waking. These were forwarded to cardiology who replied that they were suggestive of POTS. Move on to summer 2022 when the palpitations were particulary bad and I was referred back to cardiology again. After a 24 hour holter in September 22, typically when symptoms were very minimal, I finally saw a cardiologist face to face in June 2023. He dismissed the POTS diagnosis completely - I think on the strength of the holter but I also wondered if he wasn't happy to accept the data I had provided. His reaction threw me and then I failed to ask enough follow up questions!

That's the background. Then the questions!

I use an Omron BP monitor and when symptoms are bad the monitor frequently fails to take a reading - even when I am not aware of the palpitations, only the lightheaded, breathless and limp symptoms I associate with POTS. Any ideas on what might cause this problem?

Secondly, I have noticed that during tachy episodes in the morning (call it POTS?!) the kardia shows that the pulse increases further whilst I am taking it. It is as if standing still to take the ecg, the pulse speeds up and I certainly feel worse until I start moving (gently!) again. Does that make any sense?

Has anyone any experience of anything similar?

Many thanks

[Aztec632]

That's interesting because I have had tachycardia/palpitations for years and like you the mornings are horrible. It was only last night I was researching POTS and my symptoms fit too. I take atenelol to calm the heart rate. The last echo I had done was about 12 years ago now and I was told that that I have normal heart structure so really have just put up with although recently

I requested an ECG and I am waiting on 24hr holter as its been a while since any check ups.

My GP asked me if I thought it was anxiety which I do suffer from. I have a life threatening condition (which isn't heart related) and I told him I believe it is the other way around and my symptoms causing the anxiety.

The morning awakening isn't pleasant is it!! I couldn't cope without my beta blocker I hope you get some answers and it would be good if you could post any updates.

[chestnutty in reply to Aztec632]

I have now had a follow up with the cardiologist. This confirmed a normal echo result - good news! As far as POTS is concerned he indicated that the holter test results didn't show a high enough rise in HR on standing. It seems strange as the POTS information I have gathered from the POTS UK website suggests a rise of 30. However subsequent research suggests a HR of >120 as well to warrant a POTS diagnosis. See below though it is a rather technical document requiring exercise of rather a lot of 'little grey cells'

franklincardiovascular.com/...

I am now down for a CT angiogram to check for aterial disease because of the tendency to have a tight chest associated with breathlessness particularly on exertion.

Disentangling the anxiety vs symptom cause and effect is incredibly hard but I agree that the tendency seems to be to assume anxiety is the cause. I think a vicious circle is a more likely scenario!

[Aztec632 in reply to chestnutty]

Hi thanks for the link...wow! An interesting read! When I first wake up I wriggle my feet and stretch my legs whilst still lying down. I then reach for my bottle of water and take a good few sips. Then I slowly sit up and lower my legs. I then squeeze the leg muscles by raising my feet to tip toe and back down again and I repeat a few times before standing upright. Sometimes that seems to be enough to be able to get to the barhroom. Other times if my heart rate really kicks off on standing I lie back down and raise my legs above my head for a few minutes and I find that this helps the most. I will then take a beta blocker atenelol and wait half an hour..well thats if I don't have a full bladder and if I do I just have to go and suffer the fast heart rate and quickly get back to the bed and then raise my legs 🫤. I don't tolerate heat very well and at the same time I have raynauds in the winter so get cold hands and feet.

Back in June I had a 24hr urine test for metadren output and normetadre output but as it came back in normal lab range nothing more has been said by my GP.

Home management and a beta blocker seems to be the only solution for me. I have lived with the symptoms for a few years now. It's not ideal and the mornings are a challenge.

I dont get the breathless feeling that you describe so it's good that you are having further tests done. I do have an intolerance to exercise but I put that down to another condition I have which is autoimmune.

It would be lovely to wake up and feel 'normal' whatever normal is. I have forgotten! Please keep us updated and I hope all goes well with your next appointment.

[chestnutty in reply to Aztec632]

That sounds tough to cope with. I feel for you. What seems to pass for 'normal' in the morning these days is indeed a mere shadow of was it was and should be. Acceptance of the new norm is hard!

My morning symptoms aren't anything like as pronounced as yours. With care I can generally stagger through a morning routine until I 'come too' a bit more, Fortunately I am retired so no time constraints and I can take it slowly. Curiously I can manage a quick night time trip to the loo without too much trouble - half asleep and balance all over the place so I have to hold on. In the morning the racing heart seems to kick in after a couple of minutes unless its a particularly bad morning when it is straight away.

Advice I was given was to drink plenty (around 2 litres a day) to prevent dehydration, get up slowly(!) and wear compression socks/ tights (which I haven't tried). I do have naturally low BP so that may be one reason for the fluid intake advice. Of course dehydration in the mornings is more likely after not drinking overnight.

I tried a low dose of bisoprolol for several months but it didn't really help and exercise tolerance was greatly reduced so I have now stopped taking it (with cardiology agreement). The low BP makes anything of the sort a balancing act!

I wish you all the best.

I

[Aztec632 in reply to chestnutty]

How high does your heart rate go in the morning and how long before it calms back down? Do you have anymore 'episodes' during the day or is it just in the mornings?I had to retire early (I am 65) so like you I can take my time. I get up early but half the morning has gone before I seem to get in gear!

[kushami36]

There’s a simple test to look at what your heart rate and blood pressure are doing. It’s called the poor man’s tilt table test.

Here is one protocol:

batemanhornecenter.org/nasa...

You can do it yourself at home or ask your doctor to do it.

Most doctors do not know much about orthostatic intolerance syndromes. Best to ask on your local Facebook dysautonomia support group for specialist recommendations.

[chestnutty in reply to kushami36]

Thanks for this. Unfortunately the link didn't work (website didn't load) but it did send me searching the internet again and I came across the article I mentioned in my reply to Aztec. According to that article though my attempts at poor man's tilt table test showed an increase in HR of greater than 30, it doesn't usually reach 120 and according to the article that appears to be a requirement for a POTS diagnosis (even though my resting HR is in the fifties).

[kushami36 in reply to chestnutty]

Sorry about the link not working.

The heart rate increase is either a sustained increase of 30bpm plus or increasing to 120 or more.

See box 2 in this article:

ncbi.nlm.nih.gov/pmc/articl...

And here are some other references:

bjmp.org/content/postural-o...

dysautonomiainternational.o...

I’m afraid a lot of doctors, even specialists, are rather confused about POTS and orthostatic intolerance in general.

Also, a Holter test cannot diagnose POTS. I forget exactly why they do it – but it’s not diagnostic for POTS. The diagnosis is as per Box 2 in the article I linked. After other possibilities are ruled out, the testing for the postural tachycardia would be done via a poor man’s tilt table test (e.g. NASA lean test) or a proper tilt table test.

Here’s a lecture from one of the experts, Dr Satish Raj:

youtube.com/watch?v=hlzzhKU...(Not working as expected?)

Edited to add: Just to make it more complicated, there are various “POTS adjacent” orthostatic intolerance syndromes, with various combinations of problems with cerebral blood flow, heart rate and blood pressure. But an autonomic specialist should be able to sort all this out.

[chestnutty in reply to kushami36]

Many thanks. A lot of interesting reading - it will take a while to digest it all!