“Grinch” Really? "caused By Deconditioning " Really?

[tachyfor50years]

I don't have a small heart but I have pots & I don't have autonomic failure but I have autonomic dysfunction.

http://heartdisease.about.com/b/2012/03/08/the-pots-controversy-continued-dr-levine-responds.htm

[davecom]

I read this a while ago. There is definitely a subset of the POTS population that is due to deconditioning - we know this from NASA and the effects that astronauts have when they come back to land. However, I think it's very few of us that are so bad to be on here. I know in my case, personally, I aced a stress test last week... and I was also told just a month ago in the hospital that "some of my problem is due to deconditioning, but not the core of it". Dr. Levine's work just makes this myth harder to deal with and even more prevalent - yet there is no doubt that exercise seems to help a lot of us, even those that are not ill due to deconditioning. For that reason, his exercise program's recommendations are worth all of our exploration. I am about to ask my doctor to contact his secretary (as they specified) for a copy.

[Hope]

Tachy,

The cardiologist I saw after my positive tilt table test told me I needed to "grow my heart". Interesting because I just had a whole slew of testing that showed I have a good heart, normal in size and was told "your heart is fine, something else is causing your heart to act this way. We just don't know what". I'm sure it's different for different people, but yeah, let's just give the "grow your heart" therapy to those whose hearts are deconditioned. I have a different cardiologist now that understands POTS better. I do wish I had a doctor that understands dysautonomia though.

[ramakentesh]

Actually I dont think deconditioning accounts for any POTS patients.

The only evidence for deconditioning being the etiological mechanisms in this subset was that they reported 'bedrest' and 'no autonomic abnormalities were found' - if you read the paper no autonomic abnormalities - including the many commonly reported in POTS subsets - were even looked for so its no surprise that none were found.

Mice with NET deficiency have reduced cardiac size but not all POTS patients do, infact no other research group has ever suggested there is an association between heart size and POTS.

Deconditioned people respond to rehab very quickly in most cases. Deconditioned patients lose blood volume but have normal aldosterone responses meaning when active again their body responds to the hypovolumia by upregulating aldosterone and renin activity so that they gain volume very quickly. POTs patients often have chronic low blood volume and unusually low aldosteron and renin responses to this decrease.

Astronauts may be different because there may be unknown or poorly understood reasons that microgravitation effects their hemodynamics. You cant compare exposure to zero gravity with bedrest deconditioning. there are studies that suggest in microgravity there is large increases in endothelial nitric oxide release meaning it doesnt represent a normal type of deconditioning.

POTS patients take much longer to respond to exercise if they do at all and nearly all of the ones involved in that specific 'protocol' now report that it did not protect them against relapse - something I predicted when the paper was first release from my own experience. Even the most hardnosed advocates of the protocol now concede that longterm their condition returned.

Lastly nursing homes and hospitals are full of people who are forced to endure months of bedrest with minimal upright activity. None of these patients exhibit POTS symptoms - you can ask your local hospital aged care doc or doctors at nursing homes.

All the study demonstrated was that exercise seemed to improve the condition in a subset of patients.

The claim that it cured the condition is almost a farse. How was the 'cure' objectively measured? What evidence is there that tachycardia alone can measure severity of pathology? What longitudal studies were used to demonstrate the 'cure'?

[angelloz]

Amen! Ramakentesh,

I wish doctors would view these studies with common sense and logical reasoning! It would help us all if false information could be rapidly weeded out!

[bebe127]

My treadmill stress test done 4 years ago indicated no abnormalities and the results were that my heart had "above average exercise capacity", I didn't even break a sweat. At the time I was an active, relatively normal 39 yow riding my bike 9 miles 5-6x/week. A week later I was in the hospital with tachycardia (even though I'd been experiencing tachy previously, but otherwise felt normal) and two months later was dx. with "what is probably POTS". Go figure?? Furthermore, on the subject of the article (which I read years ago) It is my belief that when they talk about "deconditioned" they don't simply mean couch potatoes, they mean someone who has been bedridden for a number of months or years due to illness.

[YolaInBlue]

I worked as a fitness instructor 4-5 hours a day/ 6-7 days a week, running my fitness studio until a year before getting sick. I did aerial arts, which require a lot of strength and conditioning. Even though I didn't teach lately, I remained very active, exercising 1-2 hours every day. I also eat healthy, organic food and have my own garden. It bothers me when I hear that maybe I brought it on myself by being deconditioned. When a doctor at the hospital suggested it, I showed him my aerial photos on my laptop and asked "really?" He started laughing and said "never mind". My resting heart rates were in the 50's before getting dysautonomia, now the are in the 70's with medication. I lost a lot of muscle, but I slowly build up on exercise even though it makes me feel like crap. I used to feel great after a workout. I wouldn't be able to exercise at all if not for medication. I also get echocardiogram every couple of years due to MVP that I was diagnosed with at the age 19. The reports always state that my heart is normal size.

I've read a lot of people on this forum were active before this condition hit them one day. If the solution to our problems was simply exercise everybody would do it and get better. We are not a bunch of stubborn people that enjoy being sick. I don't like the image Dr. Levine's study portrays. He might be right when it comes to astronauts. It's simply not true in most of our cases and it gives other doctors wrong impression.

[margiebee]

Wait if your heart is deconditioned wouldn't that show up on scans like an echocardiogram? Maybe I'm reading this "small heart" thing wrong, I'm not super good with medical terminology. But I mean, I was not extremely active before my symptoms started, but I don't think I was much less active than any other preteen girl. But even with that, I have had lots of imaging of my heart. The only thing abnormal about it was I have a bicuspid aortic valve. The report of my echo I had about a year ago actually states that all of the parts of my heart are "of normal size" except for the inferior vena cava which is "small"

[Batik]

Don't forget that this will also tie into the politics about ME/CFS, especially since there is such overlap between ME and POTS. There's a powerful psychiatric lobby which is seeking to have ME/CFS dismissed as "all in the head", somatisation, deconditioning and so forth.

It should also be remembered that where someone with POTS also has ME, they will probably be made worse by exercise, since the hallmark of ME is that exertion makes it worse. This is why it's not the best idea to say things like "everyone with POTS should try an exercise regime". But I don't doubt that for many people with POTS, properly-done exercise is tremendously helpful. It's certainly an area where I'd like to see more and better research.

[tachyfor50years]

Thank you every one.

You guys are amazing.

Batik, I really would like to know what is the difference between ME and CFC because I was diagnosed with CFS in the past.

ramakentesh, Are you a doctor or a researcher? you sound greater than all my doctors!

Have a great weekend everybody.

[Batik]

There are all sorts of definitions for ME and CFS. Overall, it tends to be used for the same medical condition. However, arguments rage over how to define this condition, and it's hard to diagnose, so chances are that half the people diagnosed with CFS or ME actually have something else. Which name is used is usually down to local politics and what the diagnosing doctor prefers. In the UK at least, doctors tend to prefer CFS, while patients prefer ME. Strictly speaking, ME has a tighter definition than CFS, as the latter tends to get applied to practically anyone with the vague symptom of chronic fatigue, while ME involves key features such as post-exertional malaise, neurological symptoms and so forth. I generally use ME in speech, but ME/CFS online, partly to reduce confusion, and partly because it works better in search engines. Are you more confused now or less confused?!

[HopeSprings]

Lastly nursing homes and hospitals are full of people who are forced to endure months of bedrest with minimal upright activity. None of these patients exhibit POTS symptoms - you can ask your local hospital aged care doc or doctors at nursing homes.

Yes, this was always a question mark for me too. There should be way many more POTsies if bedrest was the cause. Levine said somewhere (I read) that all those POTS patients had one thing in common "something put them to bed," but I've been on this forum long enough and have read many onset stories - most hadn't been in bed when this hit, most were actually quite the opposite, very fit and active.

[looneymom]

I hope that MAYO will stop telling the parents of teenagers that its just deconditioning. This parent knows different. Exercise does help if the body will tolerate it. Being able to stay well and finding the right medicines to help control symptoms also helps. Our cardiologist has told us that finding the right combination of therapies and medicines may be a long haul but worth the effort. Deconditioning is not the cause of POTS.

[ramakentesh]

Exercise for all pots is like treating all fevers by removing tonsils in every case.

I developed pots literally while jogging... A point no deconditioning doc wants to hear. But if you have to twist or avoid facts to make a hypothesis work its not science.

[AussieOI]

Good email Rama. I agree with what has been said. I do think though that exercise can actually really help control some of the symptoms and be beneficial however I don't believe it 'cures' POTS/NMH.

I have started exercising and I do reckon it has helped me however there are so many variables and complexities to POTS that exercise alone cannot cure POTS in my opinion.

[Chaos]

Because of my own experience with trying to rehab and "cure" my POTS symptoms with exercise for the past 3 years and having crash after crash after crash, I finally went and had 2 day cardiopulmonary exercise testing done in a test/retest setting. The results were very enlightening and showed me exactly why I haven't been successful with trying to exercise my way out of this condition. Here are a couple links to articles and the place I had the testing done.

http://www.cfids.org/archives/2004/su04-workingout.pdf

http://www.workwellfoundation.org/research-and-latest-news/

Since there are a lot of overlaps between ME/CFS, I think a lot of people who have dysautonomia/POTS etc may have this same issue. I am a physical therapist so I truly believe in exercise and the importance of exercise in recovery which is why it has been so frustrating to not have my body respond like it should when I've tried to exercise. I will still be exercising but now it'll be in a totally different manner from what my POTS doc has been telling me to do and I'll be anxious to see if I have fewer "crashes" and more stability in my overall condition.

[Chaos]

Tachy- Here's a link to the 2011 International Concensus Criteria on ME http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3427890/

The criteria are more specific than the CDC criteria for CFS. Looks like they are hoping to get a more homogenous population of patients identified so that maybe studies will show more consistent results- or at least that is one of their stated goals.

[ramakentesh]

Exercise does help me but I have to do it constantly or I go backwards. Can make me worse during the acute phase of a relapse.

[HopeSprings]

Chaos - would you mind sharing your results?

[Foggy01]

Guys check out his original study itself. Look at the graphs. While heart size went to normal (and even above normal in a case or two), blood/plasma volume remained stubbornly low. If you draw a linear trendline through the data points for blood volume a lot of them will still be below normal after 9 months even (assuming it's a linear trend that continues which it may not even.)

This abnormal blood volume combines with a stroke volume that didn't really increase that much even when cardiac size expanded a lot. Abnormal diastolic suction didn't change at all. There is obviously something going on with the heart and circulatory system even in this group of people. I'm not sure if the word is contractility (maybe rama could help out) but it seems that despite the increase in muscle size the heart doesn't seem to have commensurate increases in contractility of the muscle leading to poor diastolic suction (the negative pressure during diastole that $ucks in blood) and poor expansion (the stroke volume didn't really improve in lockstep with cardiac mass).

While Dr. Cheney's hypothesis (mitochondrial issues) about the causes behind such a "diastolic heart failure" may be unconvincing for some (rama I think you said you found it unconvincing) there does seem to be an undeniable problem with the heart's "power" (for lack of a better word) in POTS patients. Despite muscle mass approaching normal, stroke volume/blood volume, diastolic suction and overall contractility seem to be below normal. Whether one wants to say this is due to some direct autoantibody attack on the heart, or due to some immune mediated mitochrondrial issues (Cheney) or due to some other immune mediated nerve/chemistry abnormality is up to debate. But there still seems to be an undeniable issue there. (Undeniable to a full scientist; doctors can seem to be a scientist one day and an "artist" the next depending on how the wind is blowing)

This "diastolic heart failure" for lack of a better word (Cheney's term not mine), is interesting. I even find it in myself. For some reason I have hypokinetic valves. It's like the muscle is just sluggish no matter how much of it there is and just cannot act with a normal amount of power when expanding (diastolic suction) and contracting (related to stroke volume; my ejection fraction is awful). We all have different causes probably but what seems to unite us for the most part is a resultant abnormality in how hard the heart can pump. And I'm not convinced cardiac mass increases that didn't improve the other parameters anywhere near proportionally explains this sluggish heart away.

By the way, I'm studying complex dynamical systems at the moment along with the application of their general principles to our incompetent failing governance structures (corporations, hedgefunds/investment groups, banks, ratings agencies, academic economics, legislature, executive, judiciary, bureacracy, etc.) And the same core issues that has led to the peters principle becoming manifest in our world can be said to be the same in current medicine. (The peter's principle is a tongue-in-cheek principle that says a person or organisation will advance until it reaches its maximum level of incompetence at its "job" and will stagnate forevermore thereafter until "demotion"/crash).

I won't go into these at the moment, but it's actually quite interesting how virtually all failings in our world can be boiled down to a few things and medicine is rife with them too. If anyone would like to discuss it further let me know. I just am throwing it out there to maybe help other people who are in a similar spot wondering if this situation is their fault and why the doctors seem to not care and seem to be seeing what they want to see in a lot of complex problems such as ours. (an exercise specialist seeing a heart issue as primarily a deconditioning issue? Law of the instrument anyone? If all you've got is a hammer, everything looks like a nail?)

A birds eye view that shows the whole world is lurching towards its own failure and they are united in a core of common faults may put people's mind at ease as to why these supposed "rational" upstanding people are treating them like this, and remove any sense of shame or guilt.

[davecom]

The approach of the community to this article seems to require a difficult balance. Ancedotally, reading all of the stories on here and hearing stories from doctors, I haven't heard of a single person who has gotten better from POTS without significant cardiac exercise. Levine's protocol, which emphasizes the unique exercise requirements of people with POTS, seems to at least be a step in the right direction (at the very least as a guide for exercise to patients and physical therapists).

Yet, it in itself is not a cure. And it certainly has led to a lot of trouble and misunderstanding for those with POTS since it gives outsiders the wrong impression. Overall, I'd say it's a net negative - but at least it reminds all of us to try our best to do more and more activity each day as we can tolerate... I know some of us can't tolerate any at all - and I know the amount we can tolerate can be fleeting - but we must try right? Because at least for me, it seems like no medical cure is coming my way anytime soon - so this is one of the only hopes for improvement I've got - and I need hope... and since cardiac exercise works at least partially for most... it gives me some hope.

[davecom]

I want to clarify, re-reading my post, that I do not support the article or any of the conclusions that it draws. I just was trying to say that recumbant exercise is one of my only hopes for improvement in the short term.

[tealndk]

HI all,

Nice discussion!

Ive been a member here but haven't been on for a year...But wanted to chime in as I had just posted something similar on a FB group: the exercise doesn't just condition the body and heart in terms of strength and muscle mass, but what it also does is conditions the autonomic nervous system, and results in increased vagal tone (increased vagal tone = the autonomic nervous system is more able to react to changes in activity and contribute to homeostasis, quickly and efficiently). Hence, since we all (I think) have autonomic dysfunction to some degree, exercise can be hazardous to some especially those who have severe dysfunction, but it does help a little bit in many, with some of our symtpoms. Its too bad that Dr Levines group doesn't actually describe the exercise protocol in those terms, but rather only focuses on deconditioning, which we all interpret as muscle atrophy. Its not the way to explain why exercise helps, though its NOT a cure.

I used to work with the big drug companies helping them with cardiac safety testing, for new compounds/drugs. My company created tests that were more able to tease out the changes in heart rate due to autonomic shifts that happen over the course of a day (due to eating, stress, standing, sleeping, dreaming, etc), and that might lead to false positives in terms of new drugs looking like they were dangerous to the heart as they increased HR, and lead to rejection by the FDA. People who are healthy, but do not exercise, do not have good vagal tone. But those who do exercise, and are healthy, have generally excellent vagal tone. An example is that if a person with poor vagal tone rides a stationary bike for say 5 minutes at a vigorous rate, when they stop, their heart rate will not go down for 10 - 20 minutes even after they stopped exercising. But a person who has good vagal tone, who does the same, will have a normalization of the HR within 1 minute of stopping. So think about it - this is why exercise can help some POTSies.. it increases vagal tone and leads to the body being more able to cope with normal changes in activity, and daily life. And that would explain the results of why there was improvement in some POTSies with the Levine protoocl, even when other data points didnt show a benefit.

I should add that many of us have an acute onset of POTS, likely caused by some viral/traumatic event... we may have good vagal tone at the time of the onset, but as we recover from this injury and re-balance our organs and systems, exercise can bring back better vagal tone.

[margiebee]

tealndk, your response made so much sense to me. It may not really "cure" POTS by any means, but the increase in vagal tone would surely help to improve a lot of people's condition. The fact that it helps certainly to me doesn't mean that it is the cause as well. I haven't read any really in depth scientific reports on it, but at least to me, this strikes me as if one were to say "if an Advil helps your pain, your pain must have been caused by a lack of Advil". Again I am not anywhere near as medically knowledgeable as others here but to me that is just how this theory strikes me.

After having read more about this topic, I do not think that this is what caused my POTS at all, but of course increasing my fitness and vagal tone would help with my symptoms for obvious reasons. I have been meaning to get a more regular exercise plan, so this all is certainly motivating. My doctor bascally told me "lots of things can help, exercise can help very significantly if you can manage it", so that's kind of the approach I'm taking. I also do wonder if it is different for those of us who didn't have an acute onset. Unless hitting puberty is an illness, I was not ill or on bed rest in any way when my symptoms gradually began.

[Angela]

http://www.drjohnm.org/the-mysterious-athletic-heart/

maybe we were overconditioned and now on too many meds. lol. this was faintly insteresting I thought