Pots Might Not Be Dysautonomia At All?

[jangle]

I was reading this study, http://content.onlinejacc.org/cgi/content/full/55/25/2858 which suggested that some patients with POTS might not have dysfunctional autonomic function at all (unless you consider the abnormal aldoesterone to renin ratio to be caused by autonomic dysfunction which I honestly have no idea if it is or not, that's more medical sciencey stuff than I can handle.)

I know that POTS is caused by a variety of conditions, but the authors of this paper seemed to convey the message that not one of their patients had autonomic dysfunction. Could that have been a coincidence that they just happened to select a patient population with one particular type of anomaly? If so, would it be reasonable to conclude that perhaps this cardiac origin of POTS is the most common?

I just found it interesting.

[Annaliese]

I dont know where levine manages to find these people with small hearts. I know countless Potsies and not one has a small heart (and many if them were superfit before suddenly getting pots ). His study requires people embarking on an exercise regime- can you imagine the very ill dys patients agreeing to this? No, so his sample is biased. It IS interesting though that blood vol can be increased so much by exercise but this has been known for a long time. The yellow wiggle ( Greg Paige) from the childrens entertainment group was found to be "very very fit" by exercise phyiologists but he still had OI. Do some people have small hearts and therefore pots due to a lack of phyical training? probably, but i imagine this population is small.

[jangle]

Ya, I do think there are some quirky features about this particular study, especially in regards to the inclusion criteria. However, I do think there is a common unifying trait that is shared among all POTS subgroups. That is we all suffer from hypovolemia, and that things such as saline IV's seem to work for the majority of patients with POTS.

I was reading about new therapies targeting the renin-aldoesterone axis, however ignoring pharmaceutical agents it is actually well established in the literature that exercise directly influences the renin-aldoesterone axis to increase blood volume.

Perhaps then a more likely reason for why exercise improves POTS patients is increasing the skeletal muscle pump through muscular strengthening as well as correcting an abnormal renin-aldesterone axis to correct for our hypovolemia.

[icesktr189]

I have a normal sized hear ( countless ECHOS done) and they have never said anything wrong about the workings of my heart before.

[corina]

on my last echo (about 6 months ago) i specifically asked the technician if i have a small heart which i don't. my cardio assured me that my heart is strong and healthy, the only thing is that i have low pressure in my left heart chamber found during a heart cath some years ago. as that was done supine (of course!) i can imagine that would be worse on standing.

[ramakentesh]

Dr Levine's team are attempting to support a contention that POTS in some patients is the result of cardiac deconditioning. There is some evidence that exercise improves many patients with POTS. However, longtitudal studies will undoubtedly demonstrate that for most of us it iwll not protect agaist relapse.

There are many obvious pieces of evidence that demonstrate POTS has a pathophysiology beyond deconditioning:

1. reduced cardiac Norepinephrine reuptake

2. reduced NET expression

3. elevated angiotensin II plasma levels

4. failed QSART tests

5. abnormal antibody titers

to name a few.

[Katybug]

I was actually on a gradually increasing exercise program over the last few months. I started with peddling the recumbent bike at 5 mins/day and walking dog 5 mins/day in mid-Sept. I had worked up to 25 mins/day on the recumbent bike and 30-40 mins/day of walking the dog. I was being diligent and consistent with both forms of exercise. I was feeling better than I had all summer and thought it was the exercise. On Saturday I started to feel bad and have been on the downhill ever since. I have been through this cycle more times than I can count in the last 4 years and honestly I can not find any rhyme or reason to it other than this...when I start to feel better and increase my activity levels, it seems to have a cumulative effect like I am borrowing against some secret store of energy and wellness. When my body suddenly decides its had enough, I start a steady decline and the bad strectches now last longer than the good ones. I have to then allow my body to rest in what seems like excessive amounts before I start to feel better.

Two weeks ago, I would have told you that I thought there was hope of getting back to work in a couple of months, but, I know today that that was the cruel joke POTS likes to play with me. I think exercise is good for everyone, including me, so I will keep trying. But, I don't think it is going to make my POTS go away.

[ramakentesh]

Yeah that has been my general experience. it definately helps but does not cure.

[toddm1960]

#

[Rachel]

I know that a small heart did not cause my POTS. When I first came down with POTS symptoms I was a year-round competitive swimmer. I swam 3 miles a day and did weight lifting 2-3 hours per week. Yet my heart rate kept creeping up, and eventually my heart rate while sitting was always 120, sometimes 140. Tests showed that my heart was in excellent condition. Lack of physical fitness certainly didn't cause my POTS, and if exercise was truly a cure, I don't believe I ever would have gotten sick to begin with.

[L4UR3N]

I don't agree with this study at all.

Exercise helps EVERYTHING (except for arrhythmias--then dont do it!). Anyone could publish work on how exercise improves _____name your favorite disease here____. Unfortunately it does not address the underlying cause, and therefore cannot be curative. It does however help your body to function at its best so that you are better able to deal with whatever issue you're having.

Personally, all of my cardiac workups have shown a normal size heart. I also had some autonomic testing done and was diagnosed with autonomic neuropathy.

[icesktr189]

I do think exercise can help because any improved muscle tone can help pump more blood, especially in the legs, but no way is it a cure for POTS. When my POTS began I was working full time and a full time student. In no way was I sitting around the house all day being lazy. I even had a class that was to exercise every day for 2 hours. I just started to slowly start exercising, but I dont expect some life changing things to happen. I am just looking to give me body the best chance by eating healthy and treating it right.

[julieph85]

I actually feel like this article is applicable to some. I think the author is wrong in generalizing that all POTS per se is attributable to small heart because as we all know on here, our POTS is a syndrome and is not a disease in and of itself. Therefore, I think there is likely vastly different causes of the pots that we have for each of us. That being sad, I think there are some of us, myself included, that got their pots as a result of deconditioning. Mine started at the end of 14 weeks of laying on my left side 24 hours per day. That in combination with the stress on my body of carrying twins is what I think caused the pots. However, for the last 2 years I have attempted excercise and just the simple act of caring for toddlers, you would think I would be more conditioned than immeadiately after my pregnancy, yet, I still have pots and recently it has gotten bad again with no explanation. After I go to Mayo next week I'm going to attempt another more intense exercise regime and see if it helps. I'm praying it does because i don't tolerate the meds well. It is interesting in the article that he used an mri to measure heart size instead of an echocardiogram. I wonder if that made a difference. Also, why do we never get our hearts examined when we are standing up? You would think they would since that is when most of our symptoms present.

[MomtoGiuliana]

It's correct, from what I understand, that deconditioning can make POTS worse. That is why bedrest is not recommended, if the patient is able to exercise. And in fact my specialist has recommended, to me, in my case, that I really try to push regular exercise. But it does not follow that exercise cures POTS, for all the reasons we collectively know here on DINET. My specialist has never said the exercise would cure me, or that I could prevent a relapse if I just keep exercising.

[GingerA]

I don't believe this at all. I have had countless studies of my heart since I was 16 (I'm 37 now) and was continually told that my heart was in perfect condition. This is why it took my most of my adult life to find a DX. Also, a small heart does not explain other symptoms like heat/cold intolerance and cognitive problems. I think POTS is an autonomic dysfunction. I am not a doctor but I probably know more than some of them do anyway.

[kmichaelson]

I don't believe this at all. I have had countless studies of my heart since I was 16 (I'm 37 now) and was continually told that my heart was in perfect condition. This is why it took my most of my adult life to find a DX. Also, a small heart does not explain other symptoms like heat/cold intolerance and cognitive problems. I think POTS is an autonomic dysfunction. I am not a doctor but I probably know more than some of them do anyway.

My response is very similar to yours, Ginger. I've always been very active with exercise and sports to up until getting sick with this, and all of my cardio tests have been normal. However, I have a lots of neurological issues (numb, burning extremities, migraines, vertigo, Raynaud's, Sjorgens, the list goes on) that point to dysautonomia rather than cardio origins.

[Katybug]

As another argument for being fit and having POTS at the same time...

I had to stop working because of then undiagnosed POTS November of last year. In Feb, I had to have an exercise stress test before my insurance company would approve my first TTT. I went in for the test and was able to jog the last 1/3 of the test at a very steep incline. The techs were like, "Why are you here?" and then the test ended and they stopped the treadmill. One of the techs luckily caught me as I started to fall to the ground immediately after the treadmill stopped. My heart rate had hit a top rate of 165 (resting had been about 70) but it would not come back down and my blood just doesn't stay where it's supposed to if I'm not moving constantly. I was very fit...in fact they tried to make the test more difficult to get my heart rate even higher and it just wasn't happening. But it also wouldn't recover until they laid me completely flat.