Astronaut/heart Research

[HopeSprings]

I wish this Dr. would stop calling it Grinch Synrome - don't we have enough problems with the name POTS? How on earth was he allowed to rename this condition and now it's being referred to as this in the Wall Street Journal? I'm glad for the media coverage and maybe he is doing important research, but another sticking point is the statement that POTS is usually caused by a long period of bedrest - that's just not true for most of us. I feel like writing to the Wall Street Journal and asking for a correction.

http://online.wsj.com/article/SB10001424052748704495004576265071239261318.html

[RockiesGirl]

Yeah... long periods of bed rest....!!!

[sue1234]

I know I have a poor memory, but I don't recall being anywhere in zero gravity. I understand the concept of ILL PEOPLE WHO HAVE BEEN ON PROLONGED BEDREST might end up with orthostatic hypotension. BUT, that doesn't apply to most of us, as alot of us state how we were exercising, etc. really well up until it hit us.

Now, if we all have smaller than normal hearts, they NEED to investigate that! None of us were under the same conditions as astronauts.

And, the one patient they state got well, well maybe she was on prolonged bedrest. Or, if not, maybe the salt-load was what did it.

[MomtoGiuliana]

Very misleading article. Disappointing.

[ACB]

Naomi,

Thank you for linking this article! I agree that there appear to be some big problems with Levine's research regarding POTS (as well as some errors/less than stellar reporting by the author of this WSJ article). However, I was interested to read that "Dr. Levine presented research last week indicating that as little as 30 minutes a day of rowing could be as effective as 90 minutes of cycling."

I'm currently on week 3 of Levine's exercise protocol, during which the importance of rowing is stressed. This new data was interesting to me and could be helpful for POTSies who *do* benefit from exercise. If anyone is interested in reading the poster abstract from the "Humans in Space" symposium, you can find it here - http://www.dsls.usra.edu/meetings/iaa2011/pdf/2280.pdf

BTW, the patient in the article with the "near complete recovery" is the woman who blogs at http://www.potsrecovery.com/

[Birdlady]

I was already sort of questioning the person who was quoted in this article and it seems like she is always the one they refer back to...Even Dr. Levine does exclusive interviews for her on her blog. Something just seems really fishy to me about this whole entire thing. Part of me thinks this person was picked to promote Dr. Levine and his research team. The entire blog reads like an advertisement for him... I'll just leave it at that and lets others make up their own minds.

When I got POTS I was 16. What 16 year old do you know is lying around in bed doing nothing? Here's another thing to consider. Are these astronauts disabled for the rest of their lives after coming back from a mission? I'm thinking NO, but I honestly haven't ever looked into this much. I assume they feel a little out of sorts for a few weeks/months and then are normal. That's the important part here. They then go back to being normal.

[Guest tearose]

Nonsense...

My heart is bigger not smaller than average. What a silly article.

They also thought the earth was flat for a long time...

[Birdlady]

tearose,

Interestingly my heart is also getting larger which is evident on my echocardiograms. I'm probably due to get another one soon, but think it's not worth the $$ at this point.

[Yolaclover]

When I read the part about the "cause" of POTS I was so mad I couldn't read the rest.

[Ashelton80]

I feel sorry for all on here that can only see the flaws in what this man has done. My life was destroyed by POTS 2 years ago. Was it caused by decoditioning? NO! I know that, my husband knows that, but if you discredit and write off the whole study because of that then friends you are going to miss out on a possible treatment to make you a whole **** of a lot better! Because trust me when I say this, I AM GETTING MY LIFE BACK! And it's all because of Dr. Levine's exercise protocol. You don't have to agree with everything the man says for goodness sake, but like it or not this IS helping people with POTS. So, the old saying is "don't knock it til you try it".

[HopeSprings]

Not knocking it. The Dr's protocol might work - I am open to any possibility. And actually I think the astronaut research is interesting. I just don't like the terminology and the misrepresentations.

[sugartwin]

I feel sorry for the people who are going to read this article and get the wrong idea.

Dr. Levine is not the first, nor will he be the last to rightly suggest that a course of exercise can be beneficial for certain patients suffering from POTS. When I was first diagnosed, my physical therapist put me on an exercise regime HE had designed for patients with POTS. It was helpful. It continues to be helpful. I'm not cured though.

I discredit his study mostly because it reeks of cherry-picking, that is, purposeful pushing and shoving around of data in order to arrive at a particular conclusion. He also dreadfully oversimplifies a very, very complicated issue and has now taken his oversimplification show on the road, so to speak. So people are rightly upset.

[sue1234]

I was thinking about this research last night when I couldn't sleep. I'm one that doesn't get into the deconditioning theory, but I was wondering about this:

What if this exercising, while recumbent, works for a different reason. Instead of worrying about the "small" heart, instead think of the volume issue. We know exercise builds blood volume in general. To think a little further, it is well known that people with a pheo have lower blood volumes related to the high catecholamines. If we POTS people exercise when upright, we are most likely releasing catecholamines like crazy. So, by doing that, we are not able to get that volume-building effect because of the catecholamines. It would be kind of like taking one step forward, then two steps back. BUT, if we exercise sitting, we don't have the excessive catecholamines because we are not being challenged orthostatically. So, our blood volume builds until it just "fits" our vascular system. Then, MAYBE we can get to the point that when we stand, we have enough volume, so our body doesn't freak out and spew adrenaline. I think if that were the case, our POTS would officially wither away.

I think if what I just stated were the case, then they need to present the argument for this in another manner, such as the explanation above. Then, it might make more sense to us patients to get our insurance to pay for rehab or something, or heck, even DO the exercise protocol!

On a related note, I have read this linked article many times over the last couple of years. The analogy with about the car and the balloon make sense, but the doctor alluded to the "brain doesn't know it is low" in blood volume. I wish they would have talked about exactly why the brain doesn't know. Anyway, in the article it talks about adding exercise for hearth health, but wonder if their patients exercise was really for improvement of blood volume. If you read stories from around the newsletter site, there are other patients that all mention improvements with pushing through exercise.

http://www.mvprolapse.com/article_glitch.html

BTW, I was told, starting 10 years ago, that I had mild MVP. Last year, I went to a noted cardiologist and he said no, I didn't. So, what do you believe? I had many doctors before this last one, even other cardios, acknowledge that I had it.

Any thoughts on all this?

[L4UR3N]

Has anyone here actually had a CXR where it said that their heart or great vessels were small?? Mine are of normal size.

I think this research may benefit a small population of people with orthostatic intolerance, but it does not seem to fit the whole picture for the majority of us.

That being said, I believe that exercise is good for everyone. There have even been studies that have shown the benefits of exercise in heart failure patients. So, while I do not buy in to "the grinch" theory, I do believe that exercise can only help. (and recumbent exercise just makes good sense if you have problems standing up).

[Birdlady]

I think he could have use a better choice of words and been a little more compassionate. He's the one that came out with guns blazing with the grinch terminology, so we are simply responding back. He's also the one that used the word "cure" in his study... This is simply another treatment. Nothing more, nothing less.

[Victoria]

Ooooooo, this made me so angry I couldn't finish reading it. His statement that POTS results mostly after prolonged bed rest is nothing but a bunch of hog wash. I was a very athletic and active person, then one day . . . boom! Levine had best go back to the drawing board on this one. Grrrrrrowwwwwwwl.

[sue1234]

While we're talking astronaut stuff, I was reading around PubMed about the reliability of saliva cortisol AS SEEN BY THE MAINSTREAM MEDICAL COMMUNITY. I do know that midnight saliva is used by mainstream doctors for the diagnosis of Cushing's, but I didn't know if they have considered using the 4x a day sampling for looking at adrenal function, period. I know my salivas ALWAYS show low mornings and either low or normal midday. And high-normal nights. I have done, probably, 6 saliva tests in the last 10 years, and they all show the same results. At the same time, my serums all say "normal". However, one year my morning serum was 6, and another year it was 25. So, really different levels!

Anyway, I read this article, and two things stuck out:

http://www.ncbi.nlm.nih.gov/pubmed/21467821

**Keep in mind that I am comparing us POTS people to astronauts in the context of low blood volume**

1. It shows that lying 6 degrees head down for a while mimicks zero gravity. I am assuming even in a NORMAL person standing, that their blood a little bit pools. If astronauts in space don't have any pooling, then that means that they are having higher-than-normal amounts of blood in their brain. Remember that article I posted in this thread from the MVP center? It stated that the doctor said the brain is tricked into thinking that the body had enough blood volume when it really didn't? I said I was wishing he would have spoken about why the brain thinks this. Well, what if this is it? If astronauts physically have more blood in their brain, then some sensing system in their brain might say "we're good". Then, when they are back in gravity, well, then it's not so good. To apply this to us, what if we have some sort of blood-pressure(as in a back up or something of blood) in our brain? Then, our sensing system says, "we're good". I know I have always felt pressure in my head, and not from sinuses. I don't hardly ever have sinus issues, so I know it is not that. I just feel alot of pressure in my whole head, and even have pulsation in my eyes, even though my body blood pressure is normal at 115/75. I think maybe the researchers need to see if this is an issue with us--higher intercranial blood pressure--and then see if it is a structural issue(as in chiari or similar issues due to our awful necks) or if is related to vasoconstriction related to higher norepinephrine.

2. If this would be the case, no wonder we're a wreck alot. It shows how out-of-whack alot of hormonal, etc. markers get from this issue.

[Birdlady]

Sue I think you bring up really good points. Our bodies do not work even close to what is normal and as I have said in other threads, even though our hormone levels seem to be out of balance, getting them to what some call "optimal" levels does not cure us. Some feel improvements, but it does not make us better.

Chicken or the egg?

[sue1234]

Dana, definitely--chicken or the egg?

[Guest tearose]

Some doctors suffer from large egos and "SMALL BRAIN SYNDROME"...I suggest they exercise their minds!

[toddm1960]

If you do a little research on this guy he started the "Whoville" study in 2006. It took him until 2011 to find 38 people to fit the conclusions he was looking for. Now this is cherry picking to the extrem. You also find with google search he planted people in his group as members of other forums, and they stir up the same mess they have here.

This guy was also one of the doctors on the paper that set new definitions for POTS, NCS and not one word about small hearts or cures..........hum.

The "whoville" study needs to be looked at as spam or an infomercial, just watch how many posts start popping up selling this crap.

[sue1234]

OMG, Todd, POTS has made me sooo dense!! I actually googled "Whoville", thinking it was something real with the study!! And I grew up on Dr. Seuss. But, I do get your point.

[yogini]

I know that there have been a lot of posts re: Dr. Levine and now i finally understand why everyone is so annoyed. The name Grinch syndrome is totally offensive and the author should've at very least acknowledged that other leading docs have a different perspective on dysautonomia. The author's email is at the bottom of the article. avery.johnson@WSJ.com We should all write him to complain and maybe he'll do a real story on POTS. I know I will!

[Birdlady]

I completely agree with your entire post.

To add to this...There are now studies that show too much exercise is just as bad as not enough. Who is to say those partaking in this study are not causing damage to their heart? Is this being looked at? Are people being pulled from the study if they are getting negative reactions etc. I assume most of us spend a good portion of our days in tachycardia and I do not think that is a good thing. Does the body know a difference between inappropriate tachycardia and tachycardia from a cardio workout? In my experience, no it does not. Exercise and simply standing up to prepare a meal, give me the same exact symptoms of burnout. Does that mean I sit around and do nothing. Nope, I take walks and live my life as best as I can. In the summer it is much much more difficult for me though.

I have a love/hate relationship with Dr. Mercola, but I found this article very interesting. What might be a normal amount of cardio for one person might be entirely too much for another like those of us with POTS. We are exercise intolerant for a reason (that no one has determined as of yet) and pushing through that may not be good.

http://fitness.mercola.com/sites/fitness/archive/2011/03/22/beware--new-study-finds-too-much-cardio-can-hurt-your-heart.aspx

If you do a little research on this guy he started the "Whoville" study in 2006. It took him until 2011 to find 38 people to fit the conclusions he was looking for. Now this is cherry picking to the extrem. You also find with google search he planted people in his group as members of other forums, and they stir up the same mess they have here.

This guy was also one of the doctors on the paper that set new definitions for POTS, NCS and not one word about small hearts or cures..........hum.

The "whoville" study needs to be looked at as spam or an infomercial, just watch how many posts start popping up selling this crap.

[toddm1960]

Sue1234, CindyLooWho is very disappointed you didn't remember her

Yogini it's more than just the name, this guy is claiming to have cured POTS. He states this is the last line of his paper, he also states every person with POTS has a small heart. That's why people have to sign a contract binding them to silence about his program......no bad reports when the treatment doesn't cure them.