Jul 22, 2012

New Mayo Clinic Research on POTS

Check out the new Mayo Clinic study on POTS:

A Prospective, 1-Year Follow-up Study of Postural Tachycardia Syndrome

This is the first time someone has followed a cohort of POTS patients prospectively for a year to see if they improved.  Interestingly, their neuropathy and heart rate did not really improve, but their orthostatic intolerance seems to have improved somewhat.

Mayo notes that, just like in their prior 10 year retrospective study, about 50% of POTS patients in this study have a limited autonomic neuropathy.  The note that they study was designed to exclude individuals who had another known cause of autonomic failure.

I would be VERY interested to know what tests Mayo ran on these patients before ruling out other known causes of autonomic failure.  I want to know this, because I assume Mayo is doing an excellent job of ruling out known causes of autonomic neuropathy, so those are the tests that other POTS patients who have neuropathy should be asking their local neurologist for.  I am a firm believer that, if you have autonomic neuropathy, you should not accept a diagnosis of POTS until your neurologist has taken great care to rule out the known causes of autonomic neuropathy.

I hope Mayo follows this group of patients for more than a year.  We need a 10 to 20 year propsective study.  Do they all eventually recover?  Do they relapse after a period of wellness?  How do they fare during or after pregnancy?  Do any of them get worse?  Do any of them eventually get diagnosed with an underlying condition?  Does the autonomic neuropathy eventually improve?

I am thankful for the researchers at Mayo who have been involved in this study, and for the patients who were dedicated enough to return to Mayo for their 1 year follow up studies.


  1. Thanks for the informative post.

    You say, ...... if you have autonomic neuropathy, you should not accept a diagnosis of POTS until your neurologist has taken great care to rule out the known causes of autonomic neuropathy.......

    Could you post some information as to what are those other known causes of autonomic neuropathy? And also what tests are done to determine those causes?

    As I'm sure you are very aware of, not all of us have POTS competent medical practitioners......

    1. If you check out the two posts I put up on April 6, 2012, I cover this topic. The links on the second post contain a LONG list of things that can cause autonomic neuropathy, and what to test to confirm or rule them out. Good luck!

    2. Hello - In the Mayo studies, they exclude people with other causes of autonomic failure - most of that can be done by asking questions, the history, physical and medications they are taking. They would not do specific tests to diagnose other things for the purpose of these study. They just excluded the ones they suspected.

      A person can have POTS with autonomic symptoms and without them. It is also possible to have them, they get better and then they can come back if the orthostatic problem is not under control. POTS is a "partial autonomic failure". Actually, there are lots of possible ways that POTS and orthostatic hypotension and NMH are all linked but that is a question for the research people.

      From my experience - other than finding out if you have a big league autonomic conditions, like Parkinsons, MS, ShyDrager, or diabetes-related , how you manage the POTS is very similar whether the autonomic symptoms are there or not. The autonomic symptoms certainly make it more unpleasant.

    3. Back to the Mayo Research, I agree, it would be great to have more studies, from more places than one center with better information about what kinds of conditions people have had, what their treatment has been etc.

      In reading all the past publications from Mayo on POTS, there are limitations. They are a tertiary center - they see patients by referral, make a diagnosis and then send the patients back to primary to be treated. They provide good educational material but do not get involved in the management. It is not possible to tell from their results who actually followed the salt/fluids and head of the bed elevation recommendations. They do not track or recommend medications and changes unless someone asks for it. From their results, it is not possible to tell much about function - beyond autonomic symptoms. In an earlier report, they reported that a high number of the patients were at work but the details showed that a low number of them were able to tolerate activity or have a normal social life.

      It is also tricky to interpret the changes in heart rate and whether the person still meets POTS criteria - with the current debate and research on deconditioning, some of the heart rate change is being attributed to "deconditioning" and some say the person no longer has POTS - although the heart rate still elevates and the symptoms still appear. Whole body "deconditioning' is real and it is a real thing that happens to the heart and influences BP and Pulse and orthostatic symptoms but there is still much to learn before clear "buckets" can be made for diagnosis.

      Even if the person no longer meets "POTS" diagnosis, if the pulse goes up 30 beats and they have orthostatic symptoms, Mayo doctors will consider them to have 'orthostatic intolerance'. From a patient perspective, some of this is semantics - play on words. From a patient perspective - it doesn't matter fore treatment whether you have POTS, NMH or "OI" - it all should be treated the same. The challenge is that many physicians in primary care do not understand all these differences and the patients end up suffering from the confusion.

      Mayo has done a great service to study and report their findings - but there is much we don't know and much yet to know. I say this as a mother of a child with POTS for 8 years who has been bedbound for 2 years and housebound for 6 and is struggling to rehabilitate herself. We are indebted to those who have got us this far - but we need more!

  2. Have you seen anything at all on POTS during pregnancy? I cant seem to find anything on the topic and am trying to conceive. I would rather know what to expect as my neurologist seems to have no idea.

    1. There doesn't seem to be any consensus on what happens to women who already have POTS during pregnancy. There is one physician in Buffalo, NY who has written about POTS and pregnancy in a small number of women. You can find her articles on her website: http://drblitshteyn.com/

      I do not have any real data, but just form speaking with many other women who have POTS, it seems as though about 50% of them feel better during pregnancy, because pregnancy naturally increases your blood volume, and about 50% of them feel worse after the pregnancy.

      I think perhaps that it may depend on what caused your POTS symptoms in the first place.

      I am 33 and married without kids. My husband and I have decided not to try to conceive while I am dealing with POTS, because I can't imagine trying to raise a child feeling more physically ill than I already do. My POTS is caused by an autoimmune disease, and we are concerned that the autoimmune disease would flare up and get worse under the physical stress of pregnancy. We have started discussing adoption. But of course, deciding to have a child is a very private decision and everyone will have their own reasons.

      Whatever you decide, I wish you the best of luck!

    2. I had gotten POTS after the birth of my first son and I am now about 11 weeks into my second pregnancy, everything is going fairly well with the baby. For me I was doing well health wise with my pots before I conceived, although I did have some hormonal problems which caused very irregular cycles. My morning sickness has been bad at beginning of this pregnancy, but like most pregnancies I am coming to the end of my first trimester and am happy to say it's been a week since I have had morning sickness. I am concerned ofcourse for my health and the baby's so I was very selective in choosing what hospital would best fit. I live in Wisconsin so we decided that Childrens Hospital in Milwaukee was the best choice for us...they are connected to the Medical College and I would have access to the Nuerologists and Cardiologist at Froedtert if there any complications during delivery. They also have a level 2 neonatal department at Childrens Hospital and several pediatric specialist at hand if needed. I didn't have all those resource with my son and we both had several pretty serious health issues after delivery. I am very happy and relaxed during this pregnancy I know I am more prepared this time.