Dr. Levine-New Efficacy Of An Exercise Training Intervention In A Community Setting.

[RichGotsPots]

http://www.ncbi.nlm.nih.gov/pubmed/26690066

"We found that in a research setting, exercise training along with lifestyle intervention is effective as a non-drug therapy for POTS."

103 patients completed the program. Of those that completed, 71% no longer qualified for POTS and were thus in remission. The increase in heart rate from supine to 10-min stand was markedly lower (23±14 versus 46±17 beats/min before intervention; P<0.001), while patient quality of life was improved dramatically after intervention (P<0.001). Of those who were followed for 6-12 months (n=31), the effect was persistent.

CONCLUSIONS:

A training/lifestyle intervention program can be implemented in a community setting with physician supervision and is effective in the treatment of POTS. It remains to be determined whether exercise can be an effective long-term treatment strategy for this condition, though patients are encouraged to maintain an active lifestyle indefinitely.

[RichGotsPots]

I think this study proves that exercise works for a very small % of POTSies. Don't let the 71% fool you. Basically 59% could not even finish the study. That is a huge amount. No pharma drug would ever be approved with a 59% drop out rate. And then only 71% from the remaining 41% had no signs of POTS. But everyone in the study was excluded if they had any other illness like mito or mcas or whatever. What potsies don't have other illnesses? I have never talk to any that don't. Obviously exercise helps around 30% that's about what I observe from talking to people. But they didn't do a comparison of another exercise protocol vs. their "top secret one", let alone a placebo.

Also Levine believe POTS is only do to small hearts and deconditioning. Even if he thinks that had the other 59% drop out group finished that 71% would have not had POTS any more, then why do 29% still have it? Also did they do a one year follow up of people who stop the protocol or exercise? Do they get POTS again after they stop? Can they stop taking medication now? Doubt it!

[headhunter]

RichGetPots...bingo

[firewatcher]

Hello all.

I was diagnosed with Hyperadrenergic POTS in 2007.

I am now 11 months into the Levine protocol. It is not really "physically difficult," but it is rigorous (you can't let it slide, you need to complete all the time for the week.)

I no longer meet the HR criteria for POTS on most days and my extreme BP swings have normalized. I do not "grey-out" unless there are extreme circumstances usually related to body temperature. I still have other symptoms, but my daily functioning has definitely improved, my Doctor at Vanderbilt agrees.

I was not asked to go off of any of my medications. My physical therapist had the complete protocol within 48 hours of requesting it. I was not part of the study. The HR zones are customized according to your orthostatic responses and may need to be adjusted frequently during the course of "conditioning," which is one reason you don't want to be doing this all by yourself. Other issues can crop up during training that need to be addressed by a physician as well, I had/have pain and GI issues. It also helps to have a physician "cheerleader" with a realistic understanding of what is going on.

I found Dr. Levine to be exceptionally caring and kind. He addressed my concerns and issues and consulted with other doctors on my "stranger issues." My doctors can call on him with any questions.

Am I cured? Yes, depending on criteria (HR and certain ANS tests.)

Am I more functional? Yes, definitely.

Do I still have physical issues? Yes, but not as debilitating as before.

Was (is) it hard? Some days, yes. But it was never more than I was physically capable of doing. It requires a certain mental state of stubborn toughness on bad days, as well as an acceptance of only doing what you can do and that being good enough.

There is no one cure for POTS. POTS is too multifaceted and probably encompasses several illnesses. But for me, the exercise does help.

[headhunter]

Firewatcher....awesome!!!!!!!!!!!!!!!! Would not work for me, I developed some serious foot neuropaty,,,,but so glad for you....keep it up!

[Katybug]

So basically, if you have true, idiopathic POTS, then this treatment plan might help you??!! That seems like a seriously misleading way to present the findings..."71% of POTS patients benefited" from our plan. I might be in a poor mood just now, but I'm kind of sick of certain repetitive non-helpful excuses to blow off POTS patients. (And I'm not anti-exercise.)

Ok, I'm getting off my soapbox now.

[RichGotsPots]

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2914315/

"Conclusions

Autonomic function was intact in POTS patients. The marked tachycardia during orthostasis was attributable to a small heart coupled with reduced blood volume. Exercise training improved or even cured this syndrome in the majority of patients. It seems reasonable to offer POTS a new name based on its underlying pathophysiology – “The Grinch Syndrome”, because in this famous children’s book by Dr. Seuss, the main character had a heart that was “two sizes too small.”


This is from Dr. Levine's original study. #1. "Autonomic function was intact in POTS patients" the most rediculous thing I have ever heard. To me this protocol is working on a select group that has a form of POTS that isn't do to dysautonomia. #2 he claims POTS tachycardia is do to a "small heart coupled with reduced blood volume." In the 1st study they did cardiac MRI testing so it looks like they are basing it off that, but in the newer larger study they don't mention the testing in the Method and they don't mention anything about small hearts. So which is it? #3 "improved or even cured" cure is a very big claim. You need to follow patients for years often 5-10-15-20 years to see if they are cured. They didn't publish any long term follow ups. And in the new study they don't follow up longer than 12 months. Also they never say whether the patient would have to follow this protocol for the rest of their lives and never need medications again.

I think all they did was identify a group of people, possibly Firewatcher fits into that group, that will be successful with exercise. The major problem is that it is a minority not a majority. And like Katybug said, mainstream doctors and family and all the haters will tell all the POTS people they know to just exercise and get over it. So many people have told me they have a high heart rate as if mine is nothing. I feel this study hurts our community more then it helps it.

[Guest ANCY]

Last year I gave his protocol a try and only lasted a month... I was already in a tail spin before starting the program so don't think that it was my downfall but I was in a bad place afterward. I also was not physically active and so basically went from bed rest to an exercise program...

I have seen the benefit of exercise in helping with my decondioning but don't think it will "cure" me. I am currently working on getting started with a recumbant bike again and want to work up to the amount of time I would have to exercise for the program.

The only thing making this a possibility for me is the improvments I've had since having IVIG treatments. Another reason I don't think exercise is the cure for most POTS.

[Sylvie33]

I have no doubt the Levine findings are overblown for the general POTS population, yet I am now wondering how much my inactivity is worsening my symptoms.

For example, my tachycardia and neuropathic pain are increasing daily. (The only advice the bigwig dysautonomia specialist gave me in November was to MOVE!)

Like many people here, I was very athletic until I became ill a year ago...I did strenuous yoga every day...planned my schedule around my classes. When I had a brief recovery last January-April, I swam.

Now I have been bedridden since April, but have begun gentle yoga 3x/week. It is very helpful, and I know I should increase it to every day. My symptoms are still very present, but I am stronger and my balance is much improved. I also feel almost well for an hour or so after a session....helps that it is capped by a massage.

I do manage to take buses and the subway to appt.s each week, with a lot of difficulty.

I still have crushing fatigue, and I'm sort of shocked I find it so hard to leave my bed, but I only feel a true respite from my symptoms when I am supine...with head support.

I think the emphasis on exercise "cures" masks the real need for consistent, apppropriate exercise to prevent deconditioning and to preserve what wellness we have.

Firewater and Ancy's posts (as well as the drop-out rate in Levine's study), suggest the need for highly individualized programs....

I'm curious to see what others have experienced in terms of deconditioning and ways to address it .Again, I am not seeking a cure, but I would like to forestall further deterioration!

Thanks..

Sylvie

[Katybug]

I believe that we have to try to be as active as we possibly can be. But, I believe that for completely healthy people, too. We know what happens to a perfectly healthy person if they become sedentary, and, there's no reason to believe that dysautonomia patients wouldn't experience the same consequences of being sedentary. And, in fact, I would think those consequences would have an even larger impact on our issues....not because I did a scientific study but because I think that's just good common sense.

I personally feel much better when I'm able to exercise in any form and the more consistently I can do it, the better I feel. But, it doesn't help my heart rate and it doesn't make my POTS get better. It does improve my mental state, releases endorphins, helps my joint pain by preventing stiffness, reduces my waistline (which is a problem these days) which makes my body not have to work so hard. But again, that's what exercise does for anyone.

That being said, there are times because of the complications of my daily migraine, EDS, and mystery inflammatory issues, that I simply can not exercise and will actually make myself worse. Sometimes, exercise puts me out of commission for several days, whereas, if I had not exercised and just rested, I would have only been down for only the day.

If you don't read the whole study to find the details that Rich has pointed out, the implication that exercise "cures" POTS patients is what stands out and I feel like that's a slippery slope for our community.

I think we should talk about exercise more than we do, I just don't want to talk about it in the context of this study.

[Sylvie33]

Hey Katy,

Thank you for your thoughtful reply. I understand your hesitancy to address the issue of exercise in the context of this study.

I will start a new thread in the new year!

Happy New Year (knowing the only way I will see midnight is if I wake up in my first of several annoying night sweats).

--Sylvie

[Katybug]

Sylvie,

I didn't mean to shut down the conversation in any way. Please continue the discussion here, or, anywhere you feel comfortable. I was just on my soapbox again in regards to this study and the message it sends if people don't do any due diligence when reading it.

I really didn't mean to stop the discussion on this thread. What was really on my mind was that I hate that every time this particular type of research results comes up, I feel like it makes those of us that are already struggling with exercise feel worse, and, it puts undiagnosed or newly diagnosed POTS patients in a tenuous situation. But, please, keep talking about it. I think the discussion and exchange of ideas is important.

[Sylvie33]

Oh Katie,

Only someone as diligent as you are will read this far down!

Far from shutting down discussion, you made a convincing argument (for me) to begin it anew in a more open framework.

Happy New Year!

Sylvie

[firewatcher]

"I think all they did was identify a group of people, possibly Firewatcher fits into that group, that will be successful with exercise."

Actually, my ANS tests at Vanderbilt initially were NOT normal, nor were they when I was 3 months into the program, but they were getting better. However, at 6 months into the program, they were normal on testing.

Chronic daily headaches (migraines) are still one of my issues, and have hampered my ability to fully engage in exercise as has chronic pain and very high (180+ bpm) heart rates with activity.

I think part of the contention with many of these research studies are the narrow scope of the criteria (orthostatic HR increase.) Even with that though, my quality of life has improved, as has my ability to cope with my other symptoms.

I would not discourage someone from attempting this protocol, whatever their issues. I would, though, encourage the hope that life CAN get better, though it can be a struggle to get there, as well as uplifting everyone to think that they are actually capable of doing more than they believe they can.

Initially, if you check through very old posts of mine here, I thought this research was questionable and suspected cherry picking of patients in its findings. It took me years to get to the point of physically being able to attempt it, and it was against the approval of my current cardiologist. I had never met the people in Dallas before my appointment at 6 months into the program, and I was defensive of their potential attitude/demeanor.

Quite honestly, I found that Dr. Levine's (and staff) confidence in my ability and improvement (as well as the doctors at Vandy) to be honest, sincere and incredibly helpful. My current level of function and athletic ability is certainly not "normal," but I'm greatly improved from where I was.

It is no miracle, it is my effort.

I was in pain before doing nothing, but now I am in pain doing something.

[ks42]

I saw this study a couple weeks ago, read through it, and went on a good rant. Basically, Rich, you've echoed most of my issues with the study already, so I won't repeat that.

At one point, I was put on an exercise protocol that was very similar to Levine's, from what I can tell (I knew someone who went through the Levine protocol as well, so we relayed experiences). Starting the protocol, standing HR was around 150-160. After a couple weeks of the program (and mind you, I was probably only doing a couple minutes of cardio per day), I stopped sleeping. My standing HR shot up to 200+, and I couldn't even go to the bathroom on my own. My catecholamines went sky high (higher than before). The adrenaline surges were horrific, and were happening 24/7. I wound up in the hospital every few days for things like hypertensive crises, low blood volume, and even complete autonomic storms. I would get nasty fevers about 1 hour after exercising, and they'd last hours, sometimes days, even though they haven't found evidence of an infection or autoimmune disease. My muscles didn't feel sore or simply painful - they felt like they were being shredded with a knife, and no painkillers would help. I developed shaking and tremors as well, and non-stop palpitations. It might sound like I just did too much too fast; however, the program was supervised by one of the most reputable POTS doctors in the country, and at one point I was literally doing only one minute of supine cardio exercise per day, and still getting the same results. I wound up being taken off the program and put on bed rest; I was told the exercise was dangerously activating my sympathetic, and my parasympathetic wasn't compensating properly. After about 3 weeks of bed rest, my standing HR had dropped back down again to around 140. After about 6 months of bed rest, I was a LOT better, with a standing HR of around 120. Many symptoms, like dizziness and head pressure, had gone away on their own.

I wound up spending almost a complete year on bed rest. I've been out of bed now for several months, though, and am able to take walks and do a lot of things I couldn't two years ago. It was pretty obvious to me when I felt ready to get back to moving around; I didn't have to fight my body to do it, and it felt right. My standing HR is often actually under 120 pretty often now. Perhaps this was just the natural progression of the illness, but I was getting steadily worse with activity, and steadily better with bed rest. I can do some yoga & slow walking now no problem. The yoga, however, is really more stretching, breathing, and centering work, so it's not really a lot of physical movement. Vigorous cardio still, even just for a couple of minutes, will send me right back to a standing HR of close to 200, and I'll have to spend a week or more in bed to get it back to baseline. So even if I just improved naturally with time, cardio still has the same effect on me that it did when I tried the program.

I know cardiovascular exercise does help some POTS patients, and I know most people don't have the dramatic reaction that I did. But I personally think it's not as simple as "cardiovascular exercise can cure POTS"; there can be a lot of complicating factors at play, and adverse reactions are possible (I'm living proof!). But I think most of us already know that anyway

[RichGotsPots]

"I think all they did was identify a group of people, possibly Firewatcher fits into that group, that will be successful with exercise."

Actually, my ANS tests at Vanderbilt initially were NOT normal, nor were they when I was 3 months into the program, but they were getting better. However, at 6 months into the program, they were normal on testing.

Chronic daily headaches (migraines) are still one of my issues, and have hampered my ability to fully engage in exercise as has chronic pain and very high (180+ bpm) heart rates with activity.

I think part of the contention with many of these research studies are the narrow scope of the criteria (orthostatic HR increase.) Even with that though, my quality of life has improved, as has my ability to cope with my other symptoms.

I would not discourage someone from attempting this protocol, whatever their issues. I would, though, encourage the hope that life CAN get better, though it can be a struggle to get there, as well as uplifting everyone to think that they are actually capable of doing more than they believe they can.

Initially, if you check through very old posts of mine here, I thought this research was questionable and suspected cherry picking of patients in its findings. It took me years to get to the point of physically being able to attempt it, and it was against the approval of my current cardiologist. I had never met the people in Dallas before my appointment at 6 months into the program, and I was defensive of their potential attitude/demeanor.

Quite honestly, I found that Dr. Levine's (and staff) confidence in my ability and improvement (as well as the doctors at Vandy) to be honest, sincere and incredibly helpful. My current level of function and athletic ability is certainly not "normal," but I'm greatly improved from where I was.

It is no miracle, it is my effort.

I was in pain before doing nothing, but now I am in pain doing something.

Every medical treatment or medicine needs to have a mechanism clearly explained. This one does not. They need to explain why athletes and extremely athletic individuals are getting POTS in the first place. Both times when my 3 triggering flares started I had been working out like crazy and been the best shape of my life. So how does it work that I need to get back in better shape and that will improve me? I think that yeah anyone who is sick long enough is lacking in conditioning so what. They cant prove it's not placebo and I find small heart syndrome a joke..

[firewatcher]

I reached a point where every medical treatment does not need the mechanism explained. Migraine is a good case in point: the researchers don't know why triptans help, but some do in some people. I'm not going to hold out on taking my migraine meds because they don't know how they work...they work for me...I take them.

Placebo can be a powerful thing. If it is placebo, then placebo has made me more functional.

I was simply trying to provide a positive experience and perhaps hope for anyone who wants to attempt the protocol.

For years, I'd read comments from naysayers who had never attempted the program. I was outright fearful of the doctor himself from hearsay. All of these delayed my attempt, until frustration with my current doctors made me swing in this direction. I had a good experience with Dr. Levine and his staff. They were knowledgable, personable, friendly and supportive. My doctors at Vandy agree that there has been improvement and encourage me to continue.

[headhunter]

Rich your points are very valid....

But, Firewatcher,,,(Placebo effect)---totally agree, I don't give a **** how one can improve, I think its important that we do...If its a green alien pill..which is placebo, so be it...

I was pushed into a long 100% remission from a similar experience that I have posted before here....when I was undiagnosed....

But yes,I think we should try anything -- even if the reasons nor mechanisms cannot be totally explained..

[looneymom]

I think exercise is very individual thing. Tyler is now riding the first 20 minutes on his r bike without resistance and then after that, he raises the resistance number up one and adds a minute each week until he is up to a total of 25 minutes. This week, he will finally be a the 25 minutes with the last 5 minutes at a higher resistance. Next week, he will up the resistance knob when he starts on minute 19 out of 25 minutes. His doctor does not want him to go over 25 minutes but eventually he will be riding the whole time amount of 25 minutes at the next level of resistance. His bike has 8 levels of resistance, so it will be awhile before he gets to the highest level of resistance. He does the bike 3 days a week and then 2 days a week he does strengthening exercises. He does all of his exercising in the morning becuse he wants to be done with it before starting on any school work. With school in the picture, it is hard for him to exercise everyday and his body cannot keep that pace. So he takes a rest day Wednesday and Sundays. In the afternoons, he has started doing some timed walking if the weather cooperates. He still sits up on the bench for 15-20 minutes 3-4 days a week in the afternoon. The hardest part after being down for so long is building up the core strength. However, he is finally able to tolerate sitting up in his wheel chiar for 45 minutes and enjoys taking a quick trip into Walmart for a few items. His doctor is allowing him to go out a little more as long as we go when the crowds are small. Tyler doctor has told us that exercise has to be increased slowly and increase only by 30 seconds to one minute a week if it involves walking or biking.

[Debbie Rose]

I was told one of the best types of exercises is a recumbent bike. And while back when I had shoulder and the "equipment" was in use they put me on one of these and since I could recline a good amount, I was able to peddle 10 minutes with my HR only going up 20-30 BPM's (beats per minute) which is fantastic for me. I am trying to make my own with parts of a bike, but have not put it together yet-or figured out how to put it together-LOL-brain not working today. I want something I can put away under my couch when not in use; and put in front of my recliner to use so I can lean back in my recliner and peddle away. My recliner back part reclines without needing the bottom to be up so live in my rocker/recliner. So still working on it

Debbie

[RichGotsPots]

Rich your points are very valid....

But, Firewatcher,,,(Placebo effect)---totally agree, I don't give a **** how one can improve, I think its important that we do...If its a green alien pill..which is placebo, so be it...

I was pushed into a long 100% remission from a similar experience that I have posted before here....when I was undiagnosed....

But yes,I think we should try anything -- even if the reasons nor mechanisms cannot be totally explained..

I agree placebo is medicine, but lets say this exercise protocol as a drug study it would not be FDA approved for POTS on those grounds. And there are easier placebo things to try. There is an awesome documentary on how placebo can work even better than medicine. They did real knee surgery vs. a fake knee surgery and to enhance the fake one they numbed the patients knees and showed them the surgery on a tv next to their head so they all really thought they had knee surgery. Not a drug but surgery. The people who had the fake surgery actually had better results than the people who had the real surgery. If that doesn't convince any one about the power of placebo idk what will.

The slippery slop is that if the results are spun as a fact that it works for a remarkable 71% of patients this false stigma is created that all doctors and family and friends will tell us we aren't pushing ourselves hard enough or that all we have to fo is exercise to cure ourselves. That's an aweful spot for a placebo to put us in. My concern is that the study is published without even finding that niche group that it might help more than others. The exact groups that dropped out of the study should be documented. Did they have mito, mast cell activation, eds, autoimmune illness, ect...

[mcoughlin]

Has anyone been in contact with Dr Levine recently? I recently got diagnosed with POTS and was interested in learning about his exercise protocol, so I got my doctor to email him and I emailed him at thr-ieem-potsregistry [at] texashealth [dot] org. It's been a few weeks, and neither my doctor nor I have received any reply. I'm in the UK, so maybe that makes a difference?

[corina]

Hi mwjc, welcome to DINET! It shouldn't be a problem, I'm in the Netherlands. One of my Dutch POTSpals received the protocol via his PT (e-mail). Have you checked the e-mail address?

[RichGotsPots]

When your doctor emails dr. Levine they send back a message that states that the person who handles emails only checks it once or twice a month so they ask for you to be patient

[yogini]

It is wonderful that there is a protocol that works for many people with POTS. Even if 5-10% of the patients feel better, it is very important given that we don't have many treatments or people studying us. I am also glad that firewatcher had a good experience with Dr. Levine, which is different from the general perception of him. I guess my question is - if you are still on POTS meds after completion of the treatment, is it really considered a cure?