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Lemons2lemonade

A Second Look At Levine

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I am reading up on on aerobic exercise and its effects. I know Levine says it "makes our hearts bigger" but I think there is much more to this. Consistently performing aerobic exercise is supposed to increase your blood volume and also your oxygen carrying red blood cells. (Hello florinef/aldosterone). Maybe our brains are used to having these extra red blood cells around. Also something to consider is the nature of aerobic exercise. Energy is created during the krebs cycle and mitochondria plays a huge role in this (hello co q 10) I'm pulling out my biology book to look at this a little closer.

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exercise has so many positive cardiovascular and endothelial effects that it is impossible to say which one is of most benefit:

blood volume

increases in nitric oxide flow mediated vasodilation

alterations in baroreflex sensitivity

it could basically improve nearly all of the etiological mechanisms of POTS so its not particularly helpful in determining the primary cause.

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I don't think anyone is doubting Dr Levine that exercise is helpful. Every single good POTS dr recommends it. I think people are bothered that he calls it a cure, says it started by all of us being conditioned, and inists on us all stopping meds & starting at like 45 mins.

Most POTSies need more care than that.

It seems like we've all become skeptical of anyone who presents a cure all and lumps us together. We know that POTS is a syndrome AND has difference causes so we need individual treatment

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I know, I am skeptical of Levine too. It doesn't make sense as far as onset. As in active people get this while they are active..if activity helps there is something missing here with onset.

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I know, I am skeptical of Levine too. It doesn't make sense as far as onset. As in active people get this while they are active..if activity helps there is something missing here with onset.

Lemons there was another study here you might find interesting:

http://hyper.ahajournals.org/content/45/3/391.full?maxtoshow=&hits=10&RESULTFORMAT=&fulltext=stroke&searchid=1&FIRSTINDEX=60&resourcetype=HWFIG

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My experience is that it helps. My second relapse I went crazy. Took three months off work and just ran like a demon - I nearly died many times or so it felt but you know that relapse was by far my shortest...

My last relapse I was exercising pretty hard but got less benefit and more rebound fatigue which made work hard.

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The role of exercise is an incredible mystery for me.

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Exercise is clearly helPful to many POTS patients. The problem with Dr Levine is that he generalizes and does nOt acknowledge how hard is to exercise and that some people simply can't. He implies that we are all deconditioned and uses the term "Grinch Syndrome" which many find offensive. Frankly his research on exercise is not all that groundbreaking. We all know that many of us who can exercise have benefitted a lot. I am not able to push myself to getting really sick to exercise so I totally understand why some people can't exercise at all.

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I just got my "reject letter" from Dr. Levine because I'm 60 years old and the cutoff is 59 years old. I believe exercise is beneficial, but I have my doubts about what Dr. Levine has said considering that I was in great shape, exercising every day, when I got POTS.

On another note, a nurse I came in contact with the other day told me her younger sister spontaneously got POTS, had it for years, then just as spontaneously, does not suffer with it anymore. Maybe it was because of her youth when she first had it? I don't know. I think I had a precursor to this years ago at a young age. So my POTS has been with me for quite a while. Sigh!

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There is no compelling evidence that exercise cures POTS in any cases other than those completely caused by prolonged bed rest and deconditioning.

An analogy used in the research is that space flight causes deconditioning when in fact models of the vasculature exposed to zero gravity demonstrate that there is increased nitric oxide activation.

Exercise helps and may do so for a variety of reasons. But there is no way that POTS is caused by deconditioning in all cases. Deconditioning doesnt increase serum angiotensin II, it doesnt reduce the expression of NET, it does alter MIBG reuptake or QSART results.

Medical research is always in a way an argument with rebuttels. A statement made and even justified and peer reviewed does not mean that its a fact that is widely accept.

There is some amazing research on POTS going on right now with some of the most compelling leads so far and the answers may be closer than you think.

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The whole exercise ? concerns me a little! My 3 children have done classical dance, ballet and contemporary for many years 2 of my children are on dance courses and also dance professionally here and there, so they spend a lot of time doing proper cardio workouts. My son spends around 5 hours a day minimum of 4 days a week dancing and my daughter even more but, they still suffer from, lightheadedness, cognitive fog, inability to hold onto fluids, whiteouts, major fatigue big time blood pooling and more on a daily basis. What I am worried about is that as soon as they stop dancing they may get even worse symptoms. Oh and their heart echos show normal size hearts BTW.

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There were a few years I stopped exercising regularly at the gym, but I would walk with my dog short distances; I was too fatigued and dizzy to do anything else. Normally, before I became sick, I was so hyperactive, I was always exercising...then, I went back to the gym, because I literally felt like I was dying. I believe the cardiopulmonary workout was good, but it didn't make me any better. I needed help medically...I needed medication, even though I hate taking any medication, it has helped me immensely!! I have a better quality of life with both...Who is this Dr. Levine, anyway? If I were you all, I would listen to your own body, exercise, but don't over do it, eat well, go to a doctor you can trust, and by all means do your own research, because we are our best advocates!! I also pray about everything, and the God gives me peace :)

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anna, that is a fair concern. Kimbell, from what i understand he is a researcher at NASA who created a program called the levine protocol and it is supposed to "cure" pots. Ultimately, it is an exercise program and he states that everyone with pots has small deconditioned hearts leading to their symptoms (this is quite controversial as many with pots were conditioned at their time of onset). He does not help this controversy by labeling us with the negative stigmatization of "grinch hearts" However, there is supposed to be some type of curativity with this program.

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In starting the Levine protocol, it was never offered to my daughter as a 'cure'. Nor was it suggested that her POTS was caused by deconditioning. She was an athlete prior to her symptoms, and I believe her POTS is genetic. The Levine exercise program has been described and explained to her as a method of hopefully improving some of her quality of life, much like the prescription for florinef has done for her... the prescription is for exercise and hopefully she will get some benefit from it. The benefits of exercise for her as a POTS sufferer have been explained to be improved cerebral blood flow, a circulatory system in top condition, increased blood volume (with chronic exercise), increased strength in her leg muscles which are your 'pumps', and a workout for your autonomic system which gets called to attention every time you exercise. On top of that, maybe she will get some endorphines going, which isn't something that happens often for her. Her program from Dr. Levine is extremely specific, and formulated from her TTT results. We have been advised that she will feel worse before she feels better, and that perseverence is the key. I don't really care whether an astronaut or a doctor designed the program. Perhaps after our experiences with the healthcare system thus far and getting her diagnosed, I should say that I am happy to have a NASA researcher involved! If she gets some improvement in her symptoms and in any small way feels better, he can call her a Grinch all he wants :)

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Yeah I think your right - despite what appears in some of the articles Im not sure Dr Levine is so adament that all patients have POTS from deconditioning. But he does believe that at least some are deconditioned - and I have no doubt he is right.

Ive said it before and Ill say it again. Exercise helps POTS

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The way it is written about in the articles, it is as if it is caused by deconiditioning and cured by exercise. He hasn't made any effort to correct despite pleadings, but I agree with you, what he calls it is secondary if it works.

In starting the Levine protocol, it was never offered to my daughter as a 'cure'. Nor was it suggested that her POTS was caused by deconditioning. She was an athlete prior to her symptoms, and I believe her POTS is genetic. The Levine exercise program has been described and explained to her as a method of hopefully improving some of her quality of life, much like the prescription for florinef has done for her... the prescription is for exercise and hopefully she will get some benefit from it. The benefits of exercise for her as a POTS sufferer have been explained to be improved cerebral blood flow, a circulatory system in top condition, increased blood volume (with chronic exercise), increased strength in her leg muscles which are your 'pumps', and a workout for your autonomic system which gets called to attention every time you exercise. On top of that, maybe she will get some endorphines going, which isn't something that happens often for her. Her program from Dr. Levine is extremely specific, and formulated from her TTT results. We have been advised that she will feel worse before she feels better, and that perseverence is the key. I don't really care whether an astronaut or a doctor designed the program. Perhaps after our experiences with the healthcare system thus far and getting her diagnosed, I should say that I am happy to have a NASA researcher involved! If she gets some improvement in her symptoms and in any small way feels better, he can call her a Grinch all he wants :)

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FWIW, as I mentioned in another thread, my first ever syncopal episode was when I was 17 in an aerobics class. With all of the postural changes in an aerobics class, I have never gotten more than 5 minutes into one without having a full sycope and a trip to the ER in the back of an ambulance. Almost 20 years later, and that is not only unchanged, but I have come to understand my POTS is caused by my EDS, which prevents me from doing ANY land-based exercise. The risk of dislocation, tears in ligaments and cartilage is just too great. I am, right this very moment, recovering from arthroscopic hip surgery. Cartilage holding my thigh bone in the hip socket tore, and proceding to shred the surrounding attached muscle. The Levine protocol would cripple me even quicker. Aquatic PT, where much of my bodyweight is supported is safer, but by no means perfect. FYI, I am 5'8, and currently weigh around 125, due to complications with my celiac disease. Prior to my onset of serious, progressive illness about 4 years ago, every job I had ever worked was highly physical, and I have always been in very good shape. My illness forces my increasing level of inactivity. To someone like me, who has aggressively pursued every possible treatment, only to run into what is essentially a genetic dead end, Dr. Levine's protocol comes across as downright offensive! Even in my case, with caution taken, exercise is beneficial. But it will never do more than slow the progress my disease is making. POTS has soooo many, widely unrelated, causes that we're aware of, it is potentially dangerous to EDS folks like me, to imply that everyone can benefit from a high impact aerobic exercise regimen. To the people who have had success and improvement, congratulations! And I mean that sincerely. But I really don't like the sweeping generalizations and disparaging "nicknames". When all of us are battling against something that is so little understood, and has dramatically changed our lives, to imply anyone's illness is a result of inferior efforts to me is ill-informed, and downright rude.

Sandy

Edited by corina

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Read his articles if you really want to know about Dr. Levine's work, there are at least 4 published scientific journal articles out there. One of them seems to state that if our POTS is not cured by his protocol, that we are not exercising hard enough, long enough, or both. I have had discussions with him by email, and he does not directly answer questions but skirts the issue of it being a cure, even though he seems to state it in his articles. My feeling is that Levine's work does us a great disservice asw it might make our physicians not take our POTS seriously, or look for a root cause of our dysautonomia, because they now feel we are simply deconditioned lazy people. This is SO unfair! Most of us were high-achieving, over-stressed, hard-working, athletes, etc. when we were hit with POTS! Couch potatoes don't get POTS, we do! And I don't have a small heart, and neither do most of us. Exercise is good for all of us, as much as we can tolerate, as becoming deconditioned is harmful to us. But most of us didn't start out that way! I think Dr. Levine's articles seem VERY unfair to us by lumping us together into a group of small-hearted deconditioned people. That is just plain WRONG. To me that is a fact borne out by thousands of us.

Edited by corina

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Usually science is about testing your theories or being your theory's own worst enemy rather than the opposite. Although I guess you've got to sell up to boost funding renewels.

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Thanks Lemon, I don't believe that program for a minute. Most of us here have exercised all our lives!! I have done every exercise known to man, and have always done everything I can to keep healthy. :D

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just thought I would chime in here. I love to exercise. I loved playing sports, field hockey, tennis, lacrosse, pilates. The idea of a small heart is just stupid for many POTS people. I have had to have my heart checked for enlargement... and yes it was a little enlarged. The heart is a muscle and if it is overworked it can become too big.

My POTS has nothing to do with being a lack of fitness although with POTS exercise can be very difficult. I try to exercise my body but keep my heart rate reasonable. If I want aerobic exercise I brush my teeth and take a shower without a break in between!

With that said I think moving your body is good for everyone and when I am able I am in the pool, on a bike, or doing Pilates. ( I did give away my rollerblades and tennis gear though :)

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I am going to play devil's advocate on this one.

While Dr. Levine does call his program a "cure," I would contend that it is more likely a compensation regimen. Exercise changes the physiology of some POTS patient's bodies enough to compensate for a physical shortcoming/malfunction. While there have been no long-term follow-up studies, anecdotal evidence shows that most symptoms return within a month of stopping the daily regimen and then you have to start all over. He does have patients that were not "cured" by his regimen and he does use medications.

I simply wish that there was enough understanding of those that could be helped and those that cannot to know which is which. The danger is always that doctors make the assumption that POTS or any condition is a singular group of symptoms that has a single cure without taking the uniqueness of the individual into account.

Just because he makes you mad, doesn't mean he isn't right...FOR SOME PATIENTS.

BTW, Exercise is a help for me...in limited doses. If I want to do cardio, I just wait a while before taking my morning meds and I'll get a half-hour of my target HR and a soaking sweat just sitting there!

Edited by firewatcher

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