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RichGotsPots

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

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I was very happy to have a good experience as well. I had expected something far less pleasant, and was impressed by the amount of compassion. The only POTS meds I stopped were propranolol and the daytime dose of dDAVP. I am still off those.

Is it a cure....? I'd call it more of a treatment. I have not checked my orthostatics in several months and do not feel the need to do so. I feel better than I did before. Currently that is enough.

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There is a new POTS article out by Dr. Raj:

Heart Rhythm. 2015 Dec 28. pii: S1547-5271(15)01674-4. doi: 10.1016/j.hrthm.2015.12.039. [Epub ahead of print]

Row, Row, Row Your Way to Treating Postural Tachycardia Syndrome.
There is no abstract, so I am curious to see what the actual article says...

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Hi Firewatcher, I've searched for the abstract also using other medical journals and can't find it either. Hm... will keep looking, though!

However, I wondered if you might find this helpful. I did see this FB post from the Dysautonomia Clinic, owned by Dr. Blitshteyn, who is one of DINET's trusted medical advisors.

She said the following when posting the article link, Row, Row, Row Your Way to Treating Postural Orthostatic Tachycardia Syndrome by Dr. Raj:

"Dysautonomia Clinic, January 15 at 1:39pm ·

The following key points are suggested by Dr. Raj regarding POTS and exercise:

1. Exercise is a treatment…not a cure.

2. The key to the program is to initially avoid upright exercises and instead focus on exercises where one has a “small gravitational profile”. Rowing machines were the preferred mode of

exercise. These provide an excellent aerobic workout, provide some leg muscle resistance training, and patients are seated in a squat position. Recumbent cycles or swimming are reasonable alternatives.

3. Some POTS patients may have co-morbid issues that make certain exercise programs impractical. For example, POTS patients with joint hypermobility may be prone to hip or patellar dislocations that may preclude the use of rowing machines. Swimming may be a more joint-friendly option in these

cases.

4. Exercise duration and consistency are important. Early during the exercise program, POTS patients should increase their duration of aerobic training to 30 minutes continuously per session. Patients should plan on exercising every other day. Once or twice per week will not likely be adequate.

5. Set realistic expectations. One challenge is that exercise is often spoken about in glowing terms. This can set the expectation that patients should feel better with exercise. In the short-term that will not be true as POTS patients will feel more fatigued before they start to feel better. It can take 4-6 weeks of regular activity before patients start to notice any improvement. If patients

do not know to expect this delayed gratification, there is a good chance that they will prematurely discontinue the program."

Dr. B on our medical advisors page: http://www.dinet.org/index.php/about-us/advise

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SarahA33,

I agree with every single one of Dr. Blitshteyn's points from my own personal experience.

Maintenance is also key: two weeks with significantly reduced activity will cause me a setback. BUT...it is a treatment IF you can stick to it. For me, it has fewer side effects than some medications I've tried.

Still curious to read the full text of the article though.

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Again if it seems like I am against trying exercise then that is a misunderstanding of what I am saying. The point is how the research is presented, It's presented as a "cure" and a high "cure rate." For each individual like Firewatcher who has a great improvement, to them it's 100% rate. But in reality it's not nearly at that rate. If it is a much lower rate but the medical community and the patient and thier families are lead to believe its a much higher rate then it actually is, that is a HUGE disservice to all the people not helped by exercise.

Now take the 71% who were not helped by exercise in that study, the 59% who could not complete it because of complications and the 29% who completed it but who didn't improve. They are the majority, but doctors and family will treat them as doing the program wrong, being lazy, crazy, or some other thing that is unfair.

The most important point to take away is what were all the complications that were soooooooo bad people needed to stop the protocol completely. Did they end up being hospitalized, did they have heart attacks, did they catch infections by weakening their immune system. What happened? What other illness did these people have like EDS, MITO, CFS, Fibro, Autoimmune Illness, Lyme Disease, Mast Cell Activation, ect... To me that is even more important because maybe those group should never ever attempt an exercise protocol.

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I agree there is some controversy surrounding this treatment - but ultimately something that helps some patients is a good thing. Even if not a cure, helping is good.

The results show that the treatment doesn't work for all patients and is highly challenging for many patients, so hopefully doctors would not blame the patient if it doesn't work. Patients shouldn't blame themselves if the treatment does't work of them or if they aren't a candidate for the treatment.

The risks would need to be evaluated by each patient with their doctor. There are always risks, but then there are also serious risks with any of the POTS meds.

You can also listen to your body. I didn't do the protocol, but when I started with a bike I did 5 minutes because that was all I could handle. Eventually I got to 45 mins building 5 mins at a time.

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I agree with Rich. I also question the symptoms this improves. Seems logical that if heart rate is your biggest problem, exercise may be a better option than for someone else whose symptoms aren't all heart-rate related. For example, neuropathies, cerebral hypoperfusion, low blood volume, Etc. (I didn't read all of the report).

I got a copy of Levine's protocol from a well-meaning doctor. I can't even get into the target HR zone for the workout! I do work out, though, in a lower HR zone. The last thing I need is a doctor telling me I'm not getting better becs I'm not working out hard enough. One of my doctors now says go swimming. Apparently the recumbent bike isn't good enough. No matter what I do, it's not good enough. What Rich said about being in the best shape of his life resonates. What do hear doctors want from us? Exercise as a cure just gives them excuses to tell us it's our fault we aren't getting better. At least, where I live.

EVERY doctor I have seen in my state thinks this is the be-all end-all solution to my problems. I have had three renewals of a 3-month physical therapy contract, plus exercising on my own on and off for the past 5 years. Yes, exercise helps me to feel better sometimes, but it hasn't cured me by any means. My biggest problem is sensations in my brain. I suspect I have some sort of problem with the blood vessels over-tightening, or some other problem up there. It's definitely a brain thing. Idk how exercise will change what's going on in my brain. That would be nice, though. Is there any research that shows exercise changes the brain's ability to regulate blood vessels or volume?

I don't discourage anyone from exercising. It's a great thing if you can tolerate it.

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I have a question for anyone inclined to answer. I also was diagnosed with hyperadnergic Pots. My worst symptom is chronic fatigue and I havebeen diagnosed with CFS (although it's going through a name change).

Does anyone with CFS do better with exercise? I was very fit years ago and am now deconditioned for sure. Exercise makes me sick for a few days. That's a hallmark of CFS. Obviously there is a lot of overlap between POTS and CFS anyway.

And to be clear by exercising I mean anything cardio. I can do mild yoga type things to a certain degree. I alos do well in a pool but again if I over do (like take 2 pool classes instead of just 1) I'm worse for days.

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KJay- I also have POTS and ME/CFS diagnoses. Like you, exercise makes me worse. I have always been a fan of exercise and tried for many years after becoming sick to exercise my way back into being better. However, it never happened.

A couple years ago, I did the 2 day CPET (cardio-pulmonary exercise test) and found that my VO2 max, watts produced, and several other markers all decreased 20-43% on day 2 of the test. Seeing it in black and white on paper made everything I had been experiencing in my body make sense, even though it never has made sense intellectually. I stopped trying to exercise like I used to and now pay more attention to trying to stay under my anaerobic threshold.

I think the combo of pacing activity, along with some serious meds has helped my overall situation. I am much more functional than I was previously but I don't waste a lot of my limited energy on specifically trying to exercise now. However, I can cook dinner a lot of days now, get out to the store more often than once every two months, and don't have to spend so much time in bed so that is a big improvement in my mind.

Firewatcher- Glad to hear you found this exercise program to be helpful. Are you still using TCM? Anything that gets improvement for someone is great in my book!

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I stopped the herbal TCM (traditional Chinese medicine) but still practice some core dietary changes (no sweet foods, no raw foods, no cold foods, among others.

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Thank you for responding. I think most of what you said applies to me and you are wise to have accepted what is best for you.

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Kayjay - my aunt suffered from CFS and my cousin is a GP who runs a foundation that's supporting doctors who study it. On vacation last year I came in from doing the treadmill and explained that often exercise gives me a boost if I can just force myself to do it. My cousin immediately said, "Oh wow, POTS is different than CFS then. With CFS exercise causes extreme fatigue." 


I just saw a copy of the vaunted Levine protocol for the first time and, well, I already do it. Almost to a T. I do believe that without exercise, I would not be functional at all. But exercising 45 minutes 5-6x a week is no cure for me. I function at 60%, I'd say. 

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