Astronaut/heart Research

[TXPOTS]

Oh brother... There are hundreds of people dropping dead every day of poor lifestyle choices, including a sedentary lifestyle with poor diet. I don't know many people who have exercised themselves to death. I'll have my husband pop on here and let everyone know if I drop dead anytime soon after a life of intense physical activity minus the year I spent in bed with POTS. It doesn't count if one of my neighbors inadvertently runs over me during one of my jogs. After a year and 5 months of exercise (above and beyond Dr. Levine's protocol), I no longer fit the clinical description of POTS. Finally after 3 years of ****, I seem to have pulled out this mess. I am left with residual crummy posture from hunching over all the time in my POTS induced stupor, resulting in neck pain and muscular problems that I did not have when POTS first hit. The next step is to work with a PT to correct my horrible posture. My heart rate and blood pressure is finally completely normal when upright, even when I stand still after 10 minutes. I don't know what in the heck caused POTS in my case. I was in great shape when I got POTS and do not recall having a virus. However, I can say without a doubt that exercise was the number one factor in pulling me out of this. I think father time also played a factor, but I bet money that I would still be ill if I chose to stay in bed or lead a cautious, sedentary lifestyle. I tried taking walks every on, and they were not helpful. Tachycardia at rest is not accomplishing the same thing as exercise. Exercise strengthens your heart muscle, resulting is a more efficient heartbeat over time. I have a life again. In fact, I am taking my kids to Disney World next week. I am running in a half marathon this October.

I am not a Dr. Levine worshipper. You will not see me on you tube or blogging about my success. I saw him in January and found him minimally helpful as someone already exercising beyond his protocol. He's a little brash and recommended a couple medications that did not help. I do think his exercise protocol is a good option. There is no way he is selling this protocol. I am sure that is NOT his intention. Seriously, how much money would he make with the TONS of POTS patients out there? Right. I am sure there are more lucrative ventures, such as developing a drug for more well known chronic conditions. The IEEM at Presbyterian is a first rate research and teaching facility. As far as I know, Vanderbilt and Mayo also recommend exercise as a first line treatment for POTS. To play the devil's advocate, I think a researcher would have to cherry pick to find subjects willing to dedicate themselves to a high level exercise protocol, even in the healthy population, let alone people who can barely stand.

By the way Sue, I agree with your conjecture.... regarding catecholamines, pheo, and blood volume. I have discussed this with 2 POTS specialists and my endocrinologist. It is a nasty cycle. I can tell you that I went from low blood volume to high blood volume by incorporating exercise.

Best of luck to all. I believe this may be my last post on dinet. Life calls.

Just to clarify... I am not biking in the Tour de France or practicing for the Olympics, or even running the Boston Marathon. I can certainly see the benefits of moderation. I don't think Dr. Levine's protocol comes even a tiny bit close to the exercise level athletes engaged in when referring to the studies on fibrosis and ventricular arrhythmias in lifelong athletes.

[ramakentesh]

Most POTS patients have elevated MSNA which is the opposite to the type of orthostatic intolerance exhibited by astronauts...

Exercise helps some forms of POTS. But i doubt it does for the reasons Dr Levine postulates and I was running 5kms two days before a relapse LOL. Ive never stopped exercising and I can tell you that the only thing that helped my POTS is time.

If it works for you great but if it doesnt work for another patient that doesnt necessarily mean they are being lazy or weak.

Researchers do recommend exercise for POTS. that doesnt equate to them all accepting that POTS is caused by a shrinked heart from lack of exercise or bedrest as a reaction to POTS. Infact Dr Stewart and others have suggested that it wouldnt be helpful in all forms of POTS.

For me its always the same - airflight causes a relapse irrespective of how fit I am at the time.

[yogini]

I won't comment on the procedure he followed for his study and will even go so far as to say maybe his protocol will work for some. But it doesn't sound like he understands the full range of POTS or has compassion. I am concerned if he is generating publicity that people will misunderstand POTS.

[sue1234]

TXPOTS, please don't take this the wrong way, because that is NOT how this question is meant. But, do you still take your DDAVP and Florinef? If so, then we are back to the low blood volume issue, and then what causes it. Now, if you are NOT on either, then I guess we can assume the exercise fixed everything. It really does make a difference to know if someone is gets well, and still ON meds or OFF meds. It has to be judged by that yardstick.

[firewatcher]

I think that this study as well as the article is plagued with poor word choices. "Grinch," while an attempt at quick recognition, was a very poor choice of imagery by Dr. Levine and trivializes both the condition and the suffering of the patient. "Cure" is the completely wrong word to use, treatment would be a far better choice. If any of these people stops exercise, then they WILL return to their previous state of illness.

Even the most avid supporter of Dr. Levine's protocol, and author of a POTS-blog, admits to relapse after illness or cutting back on the protocol.

While an effective treatment for many POTS patients, exercise is no CURE.

[Birdlady]

Tachycardia at rest is not accomplishing the same thing as exercise. Exercise strengthens your heart muscle, resulting is a more efficient heartbeat over time. I have a life again. In fact, I am taking my kids to Disney World next week. I am running in a half marathon this October.

A lot of your post was aimed at me, so I just wanted to respond and say that we will have to agree to disagree. From everything I have read, you have an unique case of POTS because you actually felt better while exercising. I do not feel better while exercising at all. It takes me to more time to recover than seems reasonable and I never gain any tolerance to it. I can ride 2 miles on my bike 3 times a week for a month and still feel like death when I'm done completing it. We walk the same loop at the park for years now and I still am in the same unfit state I was when I started years ago. Maybe I really am just lazy and weak. We can add that one to the Grinch terminology.

You said that tachycardia at rest is not the same thing as exercise. Have their been studies that prove this in POTS patients? If our bodies cannot figure out how to control our HR's from something as normal as standing, then I do not think we can just assume something as fundamental as this. I'd love to see more exercise related studies and I don't mean just telling people to row for X number of days a week at a certain target heart rate. I want them to test our bodies to see exactly what is occurring when POTS patients exercise and compare that to when we are "at rest" with heart rates in the 150's. There must be a difference in us and those who are "normal", so what exactly is the real difference? Why is the exercise helping some people? Does it really have anything to do with a small heart? Why are we exercise intolerant in the first place?

TXPOTS, please don't take this the wrong way, because that is NOT how this question is meant. But, do you still take your DDAVP and Florinef? If so, then we are back to the low blood volume issue, and then what causes it. Now, if you are NOT on either, then I guess we can assume the exercise fixed everything. It really does make a difference to know if someone is gets well, and still ON meds or OFF meds. It has to be judged by that yardstick.

I think Sue brings in a good point. What is cured and what is better? Are we taking medicines to keep symptoms under control and then calling that a cure? Because in my book that is not a cure whatsoever. A cure is not having to do anything to maintain a normal lifestyle.

Those who are feeling better with all of this, I am extremely jealous. No amount of exercise makes me feel good and I force myself to do the little I get now. I cannot even do leg lifts while lying on the ground before going into POTS tachycardia. This is not exercise-induced tachycardia as I can feel the difference.

Dr. Levine just rubbed a lot of us the wrong way with his choice of words... That's really what it comes down to. We are on the defense.

[toddm1960]

My main concern is that bad science studies like these get to other doctors, and becomes more main stream. In no way shape or form should the only cause of POTS be a sedentary lifestyle, or a smal heart. It's ludicrous for anyone with basic knowledge of POTS to claim this, and worse yet he claims it and that he has a cure (all his words).

I'll say it again, we all need to try exercise....it will help some and make others feel worse. It's no more than a treatment, and for him to claim if you're not cured you're not trying hard enough......well that's just over the top.

[ramakentesh]

The study itself is odd because I have been told Dr Levine is careful about which patients he includes in the study, therefore it seems odd that he would apply the selective study results to all patients.

But medical research and a published paper are a long way from being accepted science. If you do a search on POTS 2011 in google you will see that there is still some interesting work being published on POTS - including the angiotensin II, Cardiac Q interval abnormalities from increased sympathetic drive, etc. Most of the big research groups while acknowledging exercise do not accept much else of Dr Levine's et al contentions. That I do know.

In 30+ years of POTS research other than sinus node abnormalities and reduced cardiac NET function, no one has ever suggested POTS has a primary cardiac pathophysiology. It should reassure most of you that the focus of the big research in POTS is on other areas.

As for exercise - well it kinda helps me maybe? But it offers no protection to relapse and Ive had POTS for eight years.

[sue1234]

In 30+ years of POTS research other than sinus node abnormalities and reduced cardiac NET function, no one has ever suggested POTS has a primary cardiac pathophysiology.

Well, I don't know about that. There is still a population that has this from Mitral Valve Prolapse, which I'm not sure if they know why it happens. It may be another issue that shows up due to being hypovolemic.

It is nice to know that the Grinch Syndrome didn't "seal the deal" with the medical community. I hope for all of our sakes that they keep thinking up new possibilities and investigating them.

[Birdlady]

At 21 I had an echo that showed signs of MVP and I was told that's why I was getting dizzy upon standing. I now know that was a load of crap. I had another echo done ~2 years ago and there is no evidence of MVP, so if MVP was the cause of my symptoms, then they should have gone away and they have only gotten much worse over the years. I think MVP is benign in *most* people and I feel it's another one of those things blamed for symptoms it does not cause at all. My doctor was sooo very quick to blame MVP on my POTS symptoms, but when that echo came back clean he had nothing to say about it.

Starting tomorrow I am going to start doing 5 minutes a day on my recumbent bike and see how it goes...

[yogini]

I think one in 4 or 1 in 5 women have MVP - many of us probably have it, but inclear whether it's related to POTS. I personally don't think mitral valve prolapse can cause the severe symptoms that many of us have. MVP shows up inconsistently on echos and sometimes doesn't show up - I think it has something to do with hydration levels. POTS used to be called mitral valve prolapse syndrome before people knew a lot about it - but that is really a misnomer...kind of like "Grinch Syndrome"!

[ramakentesh]

MVP syndrome is what they used to call POTS before they realised our heart rates increase when we stand... Again its as description of a syndrone rather than an explanation of a condition.

Sue can you direct me to any hard science or research that suggests that a mitral valve prolapse can cause dysautonomia?

[sue1234]

The MVP Center in Birmingham, Alabama has stuff posted all over their website talking about it. You can read the various stories in their newsletter section of people talking about their symptoms and the doctors explaining the mechanism behind their MVP. I quoted one such article in an earlier post of mine in this thread.

I agree, it is just another syndrome. It goes back to probably showing up when we're hypovolemic.

So, I see a few of us have in the past been diagnosed with MVP, and then recently not. Do you others think it "went away" because we read that POTS people need to drink more fluid and so we did? If that is the case, we STILL keep going back to WHY are we hypovolemic!

[songcanary]

Yes, for decades I was told I had MVP when the doctor listened to my heart. No MRI or other testing. Now, since getting my dys diagnosis, I have had multiple echos and even a heart MRI, and there is no sign of MVP! The only thing that changed was my increased salt and fluid intake. Interesting.

[issie]

Add me to the list for the MV disorder. But, my last test - I was not very hydrated and the MV was better than it had ever been. So, not sure why. I had been made to fast for over 24 hours with only one IV bag. I was NOT a happy camper. Then that night they let me drink 1/2 gatorade and 2 juices (small) and one glass of water. Then the test the next morning. So, I almost think I'd be dehydrated at that point. There was a very slight MV regurg and some calcification right at the MV area. This calcification is a new thing. I'm wondering if it put itself there to help the valve to close better. The doctor said it was nothing to worry about and was a very common thing to happen, especially with people that have EDS. I was worried about possible arthersclorosis - the doctor wasn't.

[anna]

Sadly it is articles like this one of Dr. Levine that confuse other doctors, we have enough problems with Dr.'s thinking this condition is all in our heads, now to 'sell' his exercise protocol Dr. Levine has pumped up his hypothesis with what seems quite carefully chosen subjects, which to be honest is something many pharmaceutical companies do to interest financial backing. From what I have read here this Dr. does seem to be able to hype his views up quite a bit, in the grand scheme of things his study is very small, but it does seem to get noticed may be he has a good PR team! I noted in the news article that one subject stats that Dr. Levine's 'salt loading' and exercise program has helped her get her life back, so was it the salt or the exercise?!

One of Dr. Levine's Grinch Syndrome patients, Elisabeth Rybak, 47 years old, of New Brunswick, Canada, said at first she had to "crawl onto the rowing machine," and "you're ruined" after the tough workouts. She now credits them, plus a salt-heavy diet Dr. Levine prescribed, with a near complete recovery.

[ramakentesh]

I can almost guarantee none of his subjects had postural hypertension.

[Chaos]

Orthostatic heart rate responses after prolonged space flights.

Tank J, Baevsky RM , Funtova II , Diedrich A, Slepchenkova IN , Jordan J.

Clin Auton Res. 2010 Dec 25. [Epub ahead of print]

Orthostatic tachycardia (POTS POTSPOTS) can occur after space flights. We determined orthostatic heart rate responses in 18 cosmonauts before and 3-5 days after long-term space missions. Cosmonauts undergoing a cardiovascular training program in space experienced only moderate POTS after their return to earth. Cardiovascular countermeasures may have attenuated POTS. Another possible interpretation is that cardiovascular deconditioning is not sufficient to elicit full blown POTS in the absence of additional genetic or environmental factors.

This article abstract is from the spring DINET newsletter. Seems like researchers OTHER than Levine are fully aware that "just deconditioning" is not the sole cause of POTS for a lot of us.

[Birdlady]

Chaos thank you for posting this.

Of course deconditioning doesn't cause permanent, disabling POTS. Otherwise anyone in the hospital for longer than a few weeks would have POTS and never return to normal. Astronauts would never return to normal either. Stopping the exercise program shouldn't make anyone go back to square one. How many Americans do absolutely NO exercise at all and don't have POTS? I would guess millions of ppl.

Temporary POTS is a completely different thing than the POTS we have. That's why defining a condition based upon symptoms is an awful way of labeling all of us. Even though a lot of us have "POTS", each person's seems unique to some degree. Every single extreme presents itself in the disabling type of POTS (low bp, high bp, low blood volume, normal blood volume, high NE, low NE etc etc etc).

Orthostatic heart rate responses after prolonged space flights.

Tank J, Baevsky RM , Funtova II , Diedrich A, Slepchenkova IN , Jordan J.

Clin Auton Res. 2010 Dec 25. [Epub ahead of print]

Orthostatic tachycardia (POTS POTSPOTS) can occur after space flights. We determined orthostatic heart rate responses in 18 cosmonauts before and 3-5 days after long-term space missions. Cosmonauts undergoing a cardiovascular training program in space experienced only moderate POTS after their return to earth. Cardiovascular countermeasures may have attenuated POTS. Another possible interpretation is that cardiovascular deconditioning is not sufficient to elicit full blown POTS in the absence of additional genetic or environmental factors.

This article abstract is from the spring DINET newsletter. Seems like researchers OTHER than Levine are fully aware that "just deconditioning" is not the sole cause of POTS for a lot of us.

[ramakentesh]

In the OI experienced by astronauts there is an attenuation of the sympathetic nervous system firing rate and reduced overall vasoconstiction. whereas in most patients with POTS there is the opposite. Only a third or so of POTS patients have peripheral blood pooling and some have extremely elevated MSNA or nerve firing rates.

So the OI and tachycardia in post-space OI is a reflex mechanism to maintain postural blood flow - in POTS its not always so post space OI is not a good model of POTS in most patients.