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Anyone Else Here Not Have Pots?


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I have AAG (autoimmune autonomic ganglionopathy) - it is a rare autoimmune disorder that I suspect is not as "rare" as the doctors tell me - it is a form of dysautonomia with all the typical symptoms of autonomic failure - I have flares where I can be very ill for a period of time then sort of regroup until the next flare. I have noticed that with each episode, it takes longer to bounce back and I never fully get back to where I was.......

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Guest mattgreen

That sounds identical to me. I have only minor postural tachycardia and hypotension. I have resting bradycardia and hypotension. These things do not coincide with the dizziness and light-headedness which is constant and varying.

I do in addition get the 'headrush' and 'presyncope' feeling which is attributable to drops in blood pressure et al. So I put the regular dizziness down to dysfunction of cerebral autoregulation.

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I have been diagnosed with neurally mediated hypotension (also known as neurocardiogenic syncope). I had a TTT and was told it was normal despite my starting BP being something like 79/45. Because my heart rate doesn't suddenly increase as I am tilted, it's not POTS. However, during a subsequent TTT they administered noradrenaline via IV for the latter part of the test, and when they tilted me everything utterly crashed (BP and HR). Apparently that reaction is indicative of NMH or NCS.

I've got bad lightheadedness/dizziness, too, especially after any sort of mild exertion or just very mild excitement (literally just a phone call can set me off). I've also got very bad chronic fatigue. There is some speculation that chronic fatigue syndrome is associated with NMH, if I understand correctly.

I hope this helps!!

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Well, I do have POTS, but I've come to disbelieve the syndrome as having any significance for me. See my profile for my story. I think my 30 bpm heart rate increase with tilt table was the obvious consequence of having been horizontal too much time over a couple of years since I fell ill.

I was in good shape before, but then the energy failed me in the middle of my morning runs, etc....

The thing that bugs me with the POTS "diagnosis" is that my symptoms are fluctuating but never go away. I don't understand why, if POTS as a circulation disorder was the reason for this, I don't feel magnificently better when lying down. But that's not part of the POTS criteria.

And if I was breathing too fast, as one doctor suggested, I don't understand why I only breathe to fast when upright or sitting, not when lying down. Anxious orthostatic hyperventilation for fear of sitting? Also, if I stress myself, then my breathing slows down to become normal according to the breath tests. It's all topsy-turvy.

I've looked into some of the POTS papers and I'm generally unimpressed with the way patients are selected. Also, I think the controls used are often poorly defined and the distribution of TTT heart rate increase has not even been properly characterized in healthy folks, and various groups of unhealthy people, controlling for age, body stature, measure of fitness, etc. And no one ever came up with the idea of checking whether the postulated hypocapnia measured by breath test and associated with POTS is actually a true physiological CO2 deficiency. So lots of silly basic questions have not been addressed.

I understand why some people are really sick from POTS for a variety of rather well-defined physiological causes, but I think the POTS criterion itself is completely arbitrary and way too slack.

So, I should probably retire from this forum, I don't think I have any of these underlying conditions and the POTS criterion is quite useless as far as I can see (I'd venture the opinion that most doctors don't recognize it either, so I shouldn't have to as a patient if I don't want to.)

I've learned a lot from reading here, though! Nice people, too.

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