Chapter 29 - Clinical neurophysiology of postural tachycardia syndrome, 2019, Sandroni et al

Paywall, www.sciencedirect.com/science/article/pii/B9780444641427000667
Not available via Sci hub at time of posting.

 

Worrying sentence ‘anxiety and somatic hypervigilance play significant roles in POTS.’

 

Why? I go into anxiety mode when symptoms start to occur.

 

Well, my interpretation, and I assume Peter's as well, of the meaning of that sentence in the abstract is that it means the authors believe that "anxiety and somatic hypervigilance cause, or play a part in causing, POTS", whereas I would assume you are saying that your POTS symptoms are the cause of your anxiety mode, so two different things.

 

I agree. I am being "treated" by my POTS doctors for deconditioning and hyper-vigilance despite these diagnoses making no sense and I have made this clear to them.

They acknowledge my heart rate increasing is a physical phenomena but my heart pounding really hard is just hyper-vigilance. I know this is false due to my experience but I suspect studies like this trump me saying that I really don't think it is true.

 

And they just say "chronic fatigue", not even bothering to add syndrome.

 

My interpretation was primarily the same as @Andy, that the potentially worrying assumption was that anxiety and somatic hypervigilance some how might be seen as a causal factor, rather than a rational response to genuinely worrying symptoms. If the latter the sensible thing is to treat the condition first, and only then ask the question if there is any residual anxiety that requires addressing. Further I worry that the use of these terms is potentially pejorative, the creeping in of medical judgement into a physiological condition.

But also there is the issue that physiological changes in the body can be difficult subjectively to distinguish from psychological states that trigger the same physiological response. That if POTS say results in a physiological state that overlaps with or mimics the physiological expression of being psychologically anxious, it is hard for the person to know whether they feel anxious because they have something to be anxious about (regardless of it being real or imagined) or because they have a medical condition that is tricking them into thinking they are anxious. Surely here, if the condition can not be fully controlled, the answer is not then to treat anxiety but rather help the person understand they are not actually anxious.

In this situation of the physiology tricking you into experiencing a psychological state, somatic hypervigilance may actually help to distinguish between the physiological and the psychological and help you learn when you can rationally ignore this ‘false’ anxiety. A parallel for me is a sudden feeling of depression with no associated depressive thought patterns, that is part of the aura of an upcoming migraine. At first it was distressing, but now I know it requires no action other than preparing for being knocked out by a migraine. It is now just a migraine symptom and not an emotion or a psychological event but it required self observation and introspection to get to this point.

Also somatic hypervigilance seems to me a very rational response to any poorly understood medical condition. I and many other people with ME are continuously trying to make sense of what is happening to us, to spot patterns, establish possible causal relationships. My experience has been that this has ultimately helped me to manage my condition better; that subjectively understanding PEM, that spotting my food intolerances even though their symptoms may be delayed by up to 24 hours, that understanding my orthostatic intolerance means length of time being upright is as much a limiting factor as any physical exertion all mean I can manage my ME better. An uninterested or busy doctor may resent being presented with a flood of symptoms and sensations, but it is their job to help the patient organise and understand this range of sensations, to learn what can safely be ignored and what requires action.

 

Being aware of the pounding heart is not hypervigilance. It's not a choice. It's no different than being aware of pain. You can't just choose to not notice it.

This is not "patients obsessively focusing on their heartbeat and amplifying their perception of benign bodily sensations until they feel abnormally intense". It is something that invades your consciousness and you try to ignore it because you're weary of it but you cannot withdraw from it.

 

It's kind of like someone punching you in the arm and saying it only hurts because your focusing on it excessively.

I have brought up pounding heart (different to racing heart) to many doctors and have consistently got the hyper vigilance BS. I argue this diagnosis with all of them but it seems they just take that as more proof you are irrational or don't want to believe it or something.

The thing is, went it gets real bad not only can I feel it (extremely uncomfortable), but I can also see my body pulsating and my head actually bobbing in time with the beats. Also every time a doctor checks my pulse they say its super easy to feel and this means I have a strong healthy heart.

Personally this is my worst symptom, I feel as though my heart is struggling to pump the blood around my body so is thumping hard and in a weird way.; Makes me wonder if something is going on like Dr Cheny saw in his patients; Left ventricle overcompensating for lower fill volume, etc?

 

2009 article which finds a difference in anxiety scores between two questionnaires, one which includes somatic symptoms which overlap with Pots symptoms, and one looking at more cognitive factors.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2758320/?tool=pubmed

 

This is a very interesting symptom that i also have, but never paid much attention to. Most of the time i can hear my heart beat, not in the sense of hearing the "swoosh" in my ears, i literally feel the heart doing its thing. I guess it's not normal? Sometimes, i think when laying down after exertion, i also feel the pulses everywhere, and my vision tilts slightly then goes immediately back to normal with each beat, like the force of the blood flowing through my eyes makes them move or interferes with vision. I can also feel and see(in the mirror) the vein in my temple pulsating. FYI my blood pressure is fairly low (usually 100/60). These sensations are not annoying to me so i never mentioned them to a doctor but perhaps they might be an important clue? What do you guys think?

Another thing i want to mention is that i have a very positive tilt table test but i feel like it's more difficult to sit with a good posture as opposed to staying still and upright. This seems pretty weird and different from most POTS patients. As @Jonathan Edwards said, orthostatic intolerance just means intolerance to an upright position and POTS is just one of the many possible mechanisms behind it, you can have orthostatic intolerance even without an increase in heart rate(anecdotal but some people with cfs report improvement with compression stockings even if they don't have POTS). I get the feeling "POTS" is many different illnesses and mechanisms lumped together.

 

Both authors are from the Mayo Clinic, so it's no surprise there is a psych attribution, and no surprise they appear to conflate CF with ME/CFS.