Is POTS a central nervous system disorder? (Blitshteyn, 2021)

[Muon]

Is postural orthostatic tachycardia syndrome (POTS) a central nervous system disorder?

Same thread on Phoenix Rising forum

Abstract

Postural orthostatic tachycardia syndrome (POTS), a disorder of the autonomic nervous system characterized by a rise in heart rate of at least 30 bpm from supine to standing position, has been traditionally viewed as a dysfunction of the peripheral nervous system. However, recent studies and evidence from overlapping conditions suggest that in addition to being considered a disorder of the peripheral nervous system, POTS should be viewed also as a central nervous system (CNS) disorder given (1) significant CNS symptom burden in patients with POTS; (2) structural and functional differences found on neuroimaging in patients with POTS and other forms of orthostatic intolerance; (3) evidence of cerebral hypoperfusion and possible alteration in cerebrospinal fluid volume, and (4) positive response to medications targeting the CNS and non-pharmacologic CNS therapies. This review outlines existing evidence of POTS as a CNS disorder and proposes a hypothetical model combining key mechanisms in the pathophysiology of POTS. Redefining POTS as a CNS disorder can lead to new possibilities in pharmacotherapy and non-pharmacologic therapeutic interventions in patents affected by this disabling syndrome.

[Sarah Tee]

Just a question related to something mentioned in this abstract – can you be tested for cerebral hypoperfusion? I mean, as a normal medical test ordered by your doctor/specialist, not as part of research.

[RichGotsPots]

2 hours ago, Sarah Tee said:

Just a question related to something mentioned in this abstract – can you be tested for cerebral hypoperfusion? I mean, as a normal medical test ordered by your doctor/specialist, not as part of research.

Yes via and upright SPECT scan but it’s not easy to find someone who will do it. I also believe Cleveland Clinic in Ohio used to have some perfusion testing, not sure if brain was included

 

[RichGotsPots]

It’s an interesting paper, thanks for posting it. If you look back on when I used to hypothesis about the causes of dysautonomia and POTS in 2012/2013 I basically brought all of these points separately. It’s as if I had some genius thoughts about it, it’s just that the autonomic nervous system does not just lay in the autonomic nerves and back then we had zero research into the brainstem, or spine. I don’t think we have come a long way in 8+ years since then , to be honest. More needs to be done to example these other parts of the nervous system more closely. And it is not at all going to come through random research like we have now, it will come if we as a community push for better technology. I used to contact MRI technology schools to try to reach someone that would take an interest. We have the technology but the software needs to be fine tunes to visualize the autonomic nervous system. It’s not a priority for them because they don’t realize how much need there is for it. We wouldn’t need a QSART or a skin biopsy anymore to visualize autonomic nerve damage in our sweat glands but rather radiologist could see all our autonomic nerve branches. Unfortunately I became too ill to pursue this myself. Hopefully some doctor or research will wake up and push for this technology.

[Sarah Tee]

On 3/12/2021 at 9:07 PM, RichGotsPots said:

Yes via and upright SPECT scan but it’s not easy to find someone who will do it. I also believe Cleveland Clinic in Ohio used to have some perfusion testing, not sure if brain was included

 

Ah, thank you.

[POTSie78]

Thank you for sharing this information. It gives me hope to someday find relief.  My EPS specialist suspects I have POTS or Autonomic dysreflexia (AD) based on my symptoms and various tests that have been done.  I have spina bifida and herniated disks in my neck and both of my cardiologists seem to think my condition is related to spinal cord involvement.  It was explained to me that the center part of my brain tries to communicate to my body but there is a disconnect so I have unstable blood pressure, sinus tachycardia with pacs and pvcs, myocardial ischemia,  migraines, temperature regulation issues, digestive issues and possibly too much intercranial pressure. I have a mild form of SB but one that has caused lots of chronic issues throughout my life but I haven't been able to find any information linking POTS to SB.  I am being treated for POTS but I am going to Mayo for a confirmed diagnosis and hopefully a treatment plan that will improve my symptoms.   The past couple of weeks have been especially difficult and is affecting my ability to work.