This probably qualifies as a stupid question.....POTS without tachycardia?

[Den]

With the word 'tachycardia' in the title this is probably a very dumb question but is it still classed as POTS if there is a sustained 30+ beats per minute rise on standing with lots of associated symptoms but without the heart rate rising above 100?

If the resting heart rate is lower - in the 60s for example - then the heart rate would only rise to the 90s.

Apologies if this is a stupid question.

[Pistol]

@Den - that is not a stupid question. If your HR is 60 at the beginning of the test and then rises to 90 and stays there AND you have symptoms then they consider that POTS. I agree - POTS is a very bad name for this disorder but when they first discovered it they found that the rise in HR upon standing is what the patients shared, so they named it that. My sister has all symptoms of POTS EXCEPT the tachycardia - but she has SFN, so they called it autonomic neuropathy, not POTS. 

[Den]

Thank you so much for not making me feel like an idiot. Thank you also for such a clear answer that even my brain-fogged head can understand.

[MTRJ75]

A good portion of my symptoms, but not nearly all, are when my heart is beating at a normal rate. 

[MikeO]

For me i would go with the autonomic neuropathy (just another name for dysautonomia) my vitals wax and wane. my hr can be in the 60's then suddenly jump to 130 even though i am sitting. I do get the tachycardia at times when standing and then other times my hr does not even change. It does blow but apparently comes with the "DISORDER"

@Denthere is nothing but good questions that you can ask here and you are not alone.

I do at times chuckle about brain fog (comes with the territory) just yesterday i was looking for my bread knife as i baked some homemade bread. could not find it for the life of me just to find out i was looking right at it.    

[Den]

Brain fog sometimes make me chuckle too ....that standing in front of the kettle and forgetting how on earth I make a cup of tea! It also makes me sad and frustrated at times too.

Thank you for all these inputs - they are all so helpful and supportive.

MTRJ75.....thank you for sharing that too. I have had several days where my heart seems to be behaving itself a little better but I have felt like absolute pants with chest pain, extreme fatigue and weakness and nausea. Transversely, some days when my heart rate raises are higher I don't feel so unwell sometimes. I had assumed that meant I perhaps don't have POTS after all but, obviously not, going my your experience.

[MomtoGiuliana]

Even tho I was formally diagnosed with POTS years ago, I do not always have an abnormally high heart rate when standing, yet can have other POTS symptoms, sometimes quite disabling.  At the time I was diagnosed with POTS I was told I may also have CFS.  I've had so many symptoms at times of flare ups over the years, and varying combinations, it is confusing as to what is really going on at times.

[mehaller]

Thanks for this thread.  I've been pushing the salt and water, and my HR doesn't spike as it used to.  But the pre-syncopy and brain fog and weak legs are the same.  Slight improvement in staying upright a little longer, but the penalty for that success is major fatigue - ye old yo yo.

[Den]

This is all very helpful and interesting to me to hear. Although I am yet to be formally diagnosed I am almost certain I do have POTS. I also have Hashimotos and CFS which as has been mentioned before on other threads does seem to go hand-in-hand. 

Is salt always an issue for all kinds of POTS?. At a recent hospital visit when my tachycardia just wouldn't subside I notice my serum sodium was measured and it was 140 (range 133-146) so that is nearer the top of the range rather than the bottom (and I am assuming that serum sodium is the measure of salt or have I assumed wrong?) So I am assuming salt isn't an issue for me but perhaps someone can advise regarding this.

[Pistol]

@Den -a sodium level of 140 is perfect! And the reason POTS patients are taking in a lot of salt is because salt in the blood draws ( and keeps ) fluid into the blood stream and that counteracts hypovolemia ( not enough fluid in the blood ). This helps the HR and BP to normalize. 

Here are some articles that explain it:  How are sodium and water balanced in the body? by Precision Fuel & Hydration (precisionhydration.com)

                                                             Water and Sodium Balance - Endocrine and Metabolic Disorders - Merck Manuals Professional Edition

[MikeO]

@DenI agree with @Pistol140 is a good number to be at. As a comparison my serum sodium tends to hang out in the (132-134 range) i can tell you i do struggle with staying hydrated despite my efforts.

Not sure what your diet is like but keep up the good work.

[Den]

Hi all - I think I worded my salt query badly. What I meant to explain is that my salt levels seem good and are at this high level WITHOUT me doing anything about them or taking any kind of extra salt.

From what I have understood from what I have read this is unusual for someone with POTS. Don't POTS patients normally have low salt unless they do something about it? And does the fact that I don't have this issue suggest it isn't POTS?

Thanks as, always, for your time

 

[Pistol]

@Den - you dont have to have an abnormal sodium level when you have POTS. I get IV's that are high in sodium and other electrolytes twice a week AND I am on a high salt diet, and my sodium levels are always perfect. The kidneys balance your sodium levels, and they always correct it with water. Water goes where salt is, so if you have a lot of sodium in your blood the body will draw fluid from your tissues to correct the levels. That creates more fluid in your veins which then helps to regulate BP and HR. That is why a high fluid intake is required with a high salt intake - it creates more volume in your vessels. 

[MikeO]

I would not rely on a POTS DX by your serum sodium level. The usual Gold Standard is with a TTT test or the poor man's Dr office test.

Dr Blair Grubb wrote a recent paper talking about salt uptake and he does go into suggesting even though POTS folks are on a high sodium diet they still can present with low blood volume and that many POTS patients are clinically hypovolemic.

High Sodium Intake in Patients With Postural Orthostatic Tachycardia Syndrome

https://www.jacc.org/doi/10.1016/j.jacc.2021.03.229

[Den]

Thank you, as always, for helping me understand.