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Hi,

I always find it strange that the studies never tell us the selection criteria for participants in Levines clinical trials.

Is it people with POTS caused by pregnancy, a virus, surgery or someone like me who has probably had it all my life? Do the patients have any other illnesses or is it just primary POTS.

The report again leaves me with more questions than actual answers. Plus after all the tests I have had Ive never been told that my heart is too small. With walking more than 20 miles a week before I became ill I thought it might have been something I would have noticed. *sarcasm alert*.

Rach - sorry could be the morphine is enhancing my sarcasm output today! LOL

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"Ok, who do I have to write to to ask them to STOP calling it Grinch Syndrome..."

Actually, this is the only beef I have with his work. The flippant use of "Grinch" belittles the suffering that all of us go through and makes it sound like POTS is as serious as a hangnail. Not that POTS is the greatest acronym, but it doesn't make fun of us.

Dr. Levine's work has helped quite a few people and he is now admitting that it has to maintained daily to preserve improvement: "However, to maintain the benefits these patients will need to incorporate the training program into their everyday lives indefinitely."

Another link to a slightly larger article

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LOL Todd. You are to funny. I thought exactly the same thing everyone on here said. I tried to exercise, what happens when you just can't get past the symptoms? really wish he would study that part. I have also had POTS all my life even if it was misdiagnosed, exercise never seem to help my symptoms.

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I believe that my heart is a "normal" size, but there is a range of "normal" and maybe increasing our heart sizes helps. Sort of like my baseline BP is "normal" at 90/60, but I feel better on the higher side of "normal" 120/80.

I do hope some of his patients politely tell him to stop calling it "Grinch Syndrome". I certainly would have no problem (nicely) saying that to his face if he were my doctor!

Ultimately, though, I am willing to overlook his attitude and terminology if he is able to come up with anything that helps even a small group of people with POTS. That is so important, b/c there aren't many people even doing research on this.

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I think it is very important that they specify that this treatment helps those with hearts that are 2x smaller than normal. Then, that might explain who will benefit from this treatment. If I have a normal heart, then it stands to reason that I don't have POTS that was caused from a 2x smaller heart, thus exercise will not "cure" my POTS, as it did in his study.

The flaw in this study is not making that distinction. Don't get me wrong, I understand the importance of exercise, but I think it is something that needs to be prescribed and supervised. People that have pheos and put out above normal adrenaline, are told NOT to exercise until after their tumor is removed due to the dangerous effects of the adrenaline. Why is that theory not applied to us hyper-POTS?

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Does anyone know if the article included the actual protocol? Would be curious to know the exact exercise and time period. JAMA is one of the best medical journals, so glad for the publicity for POTS oops I mean "Grinch Syndrome" :o

Edited by yogini
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I am positive my heart is normal size. I had a cardiac catherization so the dr was inside and checked my heart and said it was the right size and no defects. I think excerise does help (helps me burn off extra adrenline). I think Dr Levine might exlcude people with EDS or joint issues or maybe h-pots?. I had my primary care dr ask for the protocol and he indicated I had suspect EDS and h-pots and he never heard back. The second doctor(he was the dr at the cardiac rehab) just put in POTS and talked about my excerise intolerance(this dr didnt understand h-POTS at all) and heard back saying they were backlogged and it might be a few weeks.

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Do you guys think it would be helpful to send letters or emails to Dr. Levine to stop calling it Grinch Syndrome? I'd be happy to work on a form letter or email for everyone to send if people would be up for it...would love to make it stop!

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They need to stop using "Grinch" as part of the syndrome name. It's an ugly and unfortunate name.

There is one thing I can agree with in his study, and that is that the exercise must be incorporated into daily life indefinitely because I'm not "cured". Whatever doesn't work, still doesn't work. It's just that I'm compensating with exercise.

When I stop exercising for any reason, illness, surgery, laziness, I'm back to square one, though I'm hoping that re-conditioning takes less time.

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Still just a treatment... Nothing more, nothing less.

He took the small subset that doesn't do well on beta blockers and had them use them. How much more flawed could a study be really... I'd assume that POTS patients with small hearts likely have low NE levels and are not hyperadrenergic POTS. Typically those with the low blood volume, aldosterone and renin POTS do terrible on beta blockers in general because it will in fact lower your BP even more. Not sure exactly what he was expecting there, except doing what it took to make his exercise idea look more appealing and get published in a medical journal.

It would be like taking a hyperPOTS patient and giving them midodrine, florinef, increasing salt intake and saying that it's odd they got worse! Someone correct me if I am wrong here... :huh:

And as others have said the Grinch terminology is horrific. He knows we hate that word. See his public relations blog...lol :rolleyes:

I'm glad some people are getting better with his protocol though, but I wish he would just present this a little bit nicer. I wonder though does it help with heat intolerance or the gastrointestinal issues that nearly ALL POTS patients have...I imagine not.

Edited by corina
defamatory
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Exercise (though not Dr. Levine's protocol) has helped me with all of my symptoms, including heat intolerance. When you start to feel better, which has happened to me gradually over time, you just feel better overall and have fewer/less severe triggers. Not all POTS patients have GI symptoms - I don't know the numbers - many/most probably do, but many don't. That's the point - that we are all so different. In reading his latest publicity, he is not presenting it as a cure all or saying that it works for everyone. As someone who took BBs for many years and had them help me, the side effects were hard to deal with. Any alternative is good. Even if it works for 20% of the people that is helpful.

That being said, we DO have to get him to stop saying "Grinch" syndrome!!!!

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You have to do alittle digging on this guy, he started recruiting patients for his study(s) back in 2005. His last two published results have cohorts of 28 and 18 patients, after thousands and thousands of people trying his program he can report on only 46. Also to join his little party you have to sign away your first born and swear to never speak of the details or negative results you may have.

This guy is also very involved with NASA and looking at how a weightless environment can cause POTS, this form of POTS also happens to people bed bound for long periods after bad accidents or illnesses. What he's doing is looking for this very specific form of POTS caused by deconditioning, and curing it by bringing these people back to a normal status with mild exercise. Now look at his small heart therory, our heart is just a muscle if you don't use it for prolonged periods.....it shrinks!! OMG :o Where he goes off the tracks is he's trying to push this as a total cureall for all POTS patients. Look at the wording difference from his first study and now this one. The first conclusion said ALL patients have small hearts, ALL POTS is caused by deconditioning, ALL POTS can be cured with exercise....ALL....ALL.....ALL. This time he has toned his verbage a bit, he uses most have small hearts, some can be cured.

This guy is not researching the type of POTS we have, but he's trying to push his narrow selection of patients and his crazy form of exercise as a cure for all of us. The real problem is he's pushing this out to other doctors who have little knowledge of POTS as the first line of treatment. No drugs....just exercise, if they don't get better they're not trying hard enough. Pushing the blame on patients.

As others have said on this thread, exercise is just another treatment, it's not a cure, it doesn't replace drugs and actually can harm some of us. Dont waste your money or time on guys like this, give mild exercise a try....if it helps keep it up....if it makes you worse, stop.

Sorry for the rant......ok I'm off my soapbox...... :D

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