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Hunting down the cause of ME/CFS & other challenging disorders - Lipkin in London
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POTS called 'Grinch Heart' syndrome

Discussion in 'Problems Standing: Orthostatic Intolerance; POTS' started by Questus, Jun 26, 2011.

  1. Questus

    Questus Senior Member

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    I was diagnosed by Dr. Klimas recently with POTS, and in doing research on it, I found many links to articles calling POTS 'Grinch Syndrome', named for the Dr. Seuss character because most sufferers have hearts that really are "two sizes too small."

    Have any of you with POTS been told your heart is physically 'too small'?

    Here's a link...There are many.

    http://bodyodd.msnbc.msn.com/_news/...t-pounding-help-for-grinch-syndrome-sufferers

    Chronic Fatigue Syndrome is an insulting 'label' and 'grinch syndrome' is also insulting!

    Has anyone seen this before?
     
  2. taniaaust1

    taniaaust1

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    I havent heard that one before. My heart is normal size.
     
  3. Esther12

    Esther12 Senior Member

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    Any association with Dr Seuss is a good thing imo.
     
  4. TinyT

    TinyT Senior Member

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    I have POTS/dysautonomia and have not been told I have a small heart, it was 'normal' on all echocardiograms.

    I know that exercise/reconditioning is recommended for POTS patients anyway (POTS only diagnosis obviously, not ME/CFS) as deconditioning (muscle atrophy and reduced peripheral musculature- leg strenght) is detrimental as your muscles help to act as a pump to prevent blood pooling.

    I'd have to read the entire article to see about their results/stats & inclusion criteria etc.

    I'm not that impressed with a sample size of 18 (17 women & 1 man).

    They dont also really discuss the autonomic dysfunction side of things or POTS as primary or secondary causes (e.g. secondary to connective tissue disorder like Ehler-Danlos Syndrome).

    From what I understand about Levine's theory (the 'grinch heart' theory as POTS cause) is that POTS is due to a small heart, low blood volume and deconditioning and that through exercise it can be improved or even cured. He has also said that in POTS autonomic function was largely intact which I disagree with.

    You cant be properly diagnosed with POTS anyway if you have had prolonged 'bed rest' (e.g. lying down) as your body will normally develop orthostatic intolerance, happens to people in hospital all the time. Thats not saying thought that people with ME/CFS AND who have to spend most of their day in bed dont also have POTS due to autonomic dysfunction.

    So basically, Yes I have seen that before, but fobbed it off as a treatment that only works for a small subset of patients. However, trying to maintain your muscle strenght/bulk- especially in your legs, is a good idea with POTS if you can manage it with your ME/CFS. I have been trying to do 10x calf raises each day. Slow and steady!
     
  5. TinyT

    TinyT Senior Member

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    http://hyper.ahajournals.org/cgi/co...se&searchid=1&FIRSTINDEX=0&resourcetype=HWCIT

    This is an abstract for an article about exercise training and orthostatic intolerance. What is interesting is they screened a whole heap of military people (who you would assume are normally pretty healthy to get into & stay in the military!) and found 36 out of 2768 had OI (via tilt table test). After exercise training training, only 6 individuals of 16 in the treatment group still had orthostatic intolerance compared with 10 of 11 in the control group.

    So, 6 out of 16 (37.5%) still had OI post treatment. So the treatment has a success rate of 60%? (I hope I'm doing these calculations right! My maths is not my strong suit!).

    They concluded that exercise training can help OI symptoms and should be used a part of treatment. I dont think it should be the be all & end all of treatment though and as this study showed, didn't work for all patients!
     
  6. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    The small heart thing has been going around. Don't know why things get started like that. I have a normal sized heart. My other POTS forums say the same. I agree grinch syndrome is horrible. EVEN if it were true the heart was smaller, the name is disgusting.
     
  7. toddm1960

    toddm1960 Senior Member

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    I'm just going to copy and paste my post from another forum:

    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 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.
     
  8. sleepy237

    sleepy237 Senior Member

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    There is a webpage talks of POTS, spaceflight, and cardiac atrophy (shrinking of heart). Wish I had the link found it on dinet somewhere.
     
  9. Questus

    Questus Senior Member

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    You don't mention who 'this guy' is. Please add a link.

    Sally, I agree. Referring to POTS as 'grinch heart' is disgusting and very disrespectful.
     
  10. toddm1960

    toddm1960 Senior Member

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    Sorry I didn't catch that his name wasn't listed in that article above, it's bennie lavine from Texas......errrrrr.....Whoville. LOL It's so scary to see articles with so much misinformation like this one. Here is a link to his latest study, if you can call 18 people a study:

    http://www.eurekalert.org/pub_releases/2011-06/aha-etp061611.php
     
  11. urbantravels

    urbantravels disjecta membra

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    I WAS told I have a smaller than average heart when I had my tilt table test (strongly positive for POTS within less than 5 minutes). The people in the Electrophysiology department were looking at a year-old chest X-ray from an emergency room visit one year ago...when I was seen for symptoms of what I now realize was POTS - blatant, obvious POTS - which nobody in the emergency department ever suggested as a possibility. But that's a separate rant.

    It was not clear to me whether the people in the Electrophysiology department were suggesting that my "small heart" was congenital or the result of deconditioning, or a combo of both. They did tell me I need to get exercise. Thus they triggered the pissed-off lecture from the patient about what CFS actually is, which they probably ignored. Like TinyT, I have been trying to do more strengthening in my legs, within tolerable limits.

    I am certainly debilitated, and deconditioned to some degree, but I am far from bedbound. There are very few days in a month when I feel bad enough to stay in bed all day; most days I get up and about a little bit, and I go out to do shopping, doctor appointments, etc.
     
  12. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    Sad.... but it made me smile the way you said it....
     
  13. taniaaust1

    taniaaust1

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    thanks todd, it was good to hear more about this guy and the type of POTS he was investigating. Yes the kind caused by no exercise is different to what most of us have (thou some of us could have that kind too due to being bedridden a long time cause long term laying can cause it too).

    I know myself that the type of POTS i have is far more then that as i do spend most of my day upright nowdays and not laying down. We usually have the type in which there is high adrenaline often happening in it.

    I hate how some take an illness and only take a look at a certain subgroup of it, then say all the cases of the illness is the same. Its so unprofessional I dont know how so many are getting away with doing that.
     

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