Better To Find A Cause ?

[Achilles2323]

OK I am wondering is it better not to find your cause for POTS after doctors have ran many many test and hope it was caused by a virus sudden onset type thing or is it better to find a cause and deal with that sickness .....I am happy they can't find anything really bad but I am frustrated because we can't treat a cause so the pots can go away .....double edged sword ?

[jangle]

The cause of POTS is rooted somewhere in the autonomic ganglia, however the complexity of the autonomic nervous system is unbelievable.

Research is aiming at trying to generate data on macroscopic dysfunctions that can be correlated to the disease process. Likely candidates thusfar have been NET deficiency, autoantibodies to ganglia, MCAD, idiopathic inflammatory processes, and RAAS dysfunction. EDS and a few case studied of malforned inferior vena cavas and other venuous abnormalities have also been noted, as have chiari malformations.

The pathophysiological process is understandably complex and therefore answers are frustrating to come by.

For example if it is found that the majority of POTS patients have NET deficiency, the solution would ideally be something on the order of correcting the epigenetic or genetic misshap. However, such a task is far beyond what current medical science could accomplish through brute force

[looneymom]

Our cardiologist is trying to find the cause of my son's POTS. Since all of the first line of medicines have been used to treat his POTS condition, and my son has not responded much to them. Our cardiologist suspects an autoimmune problem or Hyper POTS. If you suspect an underlying cause, talk to your doctor.

[Relax86]

I never found my cause and I got better. I have my suspicions but no concrete answers.

[Achilles2323]

Hope your son gets well soon and find the rite treatment

How long did it take for you to get better ? Anything u did specific ? Did u stop medication?

[ramakentesh]

The causes of POTS in most cases are still unclear, poorly understood and hotly debated. There are also some patient-driven theories.

There is somewhat of an interesting correlation between those with sudden onsets and either comorbid autoimmune conditions or small fiber neuropathy. Small fiber neuropathy in Sarcoidosis can follow a waxing and waning presentation and in diabetes and Sarcoidosis SFN with symptoms similar to POTS small fiber neuropathy has been demonstrated to suggest wider autonomic denervation (wider autonomic denervation has been demonstrated in these patients).

However no one as yet has definitively demonstrated that small fiber neuropathy in POTS is definitive evidence of wider autonomic denervation of sympathetic fibers in veins and other locations.

SFN is becoming increasingly commonly described as a complication in many autoimmune diseases, at least suggesting the possibility that it represents an autoimmune process. Some POTS patients with SFN have responded to IVIG which also supports this possibility.

The other etiology with growing evidence is the acquired NET deficiency that Jangle was talking about.