Wait, Is This For Real?

[HopeSprings]

This Dr. decided we have smaller than average hearts and can be cured with exercise? Grinch Syndrome? Is this a joke? It seems like a real article. Help me out here.

http://content.onlinejacc.org/cgi/content/short/55/25/2858

[sue1234]

Yea, we've talked a little about this article when it first came out last year. The thing I wonder about is, a lot of us where just fine, if not great, before we came down with POTS. So, the few months before POTS hit me or some others, how come we could pretty much function normally if our problem was due to a small heart? I would think it would have given us symptoms all along, huh?

Now, I can understand that AFTER we've had POTS a while, maybe we DEVELOP smaller hearts related to lack of exercise(or much movement, for that matter!! ). But, I just can't see how it is the cause.

And, if that IS the case, that our hearts got smaller AFTER we had POTS a while, and then became increasingly debilitated BECAUSE of being chair-ridden, then the doctors need to get all of us into a rehab program to fix our hearts! But, do they know the difference, because it could make a big difference!!

[handmadebyemy]

Its for real, I'm in the program now and its helping! (The article does seem strange but if it helps, who cares?!?!) Search "Dr. Levine Exercise" to see more forum posts/info.

[Sarah4444]

I was surprised by the lack of sensitivity when I read that for the first time as well. I also read a review of the article that Dr. Raj wrote, in which he diplomatically pointed out that the suggestion of the name Grinch Syndrome could be hurtful to some patients as it could be perceived as trivializing our illness. Has anyone out there met Dr. Raj or had him as their doc? From his writing about POTS he seems to be a very compassionate and thoughtful person.

I suspect that sue is right, and that since POTS seems to have multiple causes, exercise will be more completely helpful to some patients than others. These articles always make me feel like I am being blamed for having this illness, while I know in reality I struggled against it for a long time, finally succumbing and becoming deconditioned. But the illness definitely preceded the deconditioning. I worry sometimes that docs who know nothing about the complexity of POTS could be mislead by this kind of thinking.

[nunntrio]

I asked my cardiologist about this article. He read the article and the one thing he pointed out was that there was no mention of wether or not the people who "benefited" from the study actually felt any better. He said usually when they do studies they given the participants questionaires to see if they feel better as a result of their number improving. This study does not include this piece of annalysis. It does not matter if heart rate only jumps to 25 instead of 35 if you still have symptoms. I thought it was a good point. He said that it is still worth trying if I wanted. I am considering trying it because I know I have become deconditioned but I do not feel that is at all what caused my ititial onset.

[nunntrio]

Do you know where I can get a copy of the article written by Dr. Raj? I would love to see it. I did see Dr. Raj while at Vandy, he was nice but I only saw him in a research compacity. He was not my treating Dr.

[firewatcher]

Dr. Levine actually published an "apology" of sorts on PotsRecovery.com. I believe he was hoping that it would spur recognition, not trivialization. Either way, it is like saying that exercise is a "cure" for obesity; if the obese patient stops exercising and does not change eating habits or genetic components (like Cushings) the weight will come back on. A CURE is an absolute cessation of symptoms after treatment is over, Dr. Levine's system is a life-style change that won't last once it is stopped. Two weeks of bed-rest will undo any gains that any of these patients have made and it will take a month (or more) of dedicated exercise to get it back.

[juliegee]

For what it's worth- I was unable to exercise prior to finding my MCAD regimen. Heck, I was unable to even get out of bed at times . I could NEVER run. I can now. I started at age 47- been at it for almost 2 years. It has helped me in my recovery tremendously- 15 to 20 miles a week. Deconditioning did NOT cause my illness. Exercise has helped in my recovery.

Julie

[HopeSprings]

Wow, how did I miss this article and all the discussions about it!? It sounded so out there. It's a good point that the heart "shrinkage" could have occurred after (or as a result of deconditioning) from the POTS. Does this actually happen when someone doesn't get enough exercise?? One's heart literally shrinks? I wish I could test his exercise theory-- it's just sooo hard.

[sue1234]

Julie, can you tell me your story? How long did you feel bad, what was your average day like, and did you address the MCAD and then exercise? (Wow, alot of questions!) I just want to hear someone's story that was 'down', and now running. I do realize you say you have trouble standing in one spot, but it sounds pretty good from at least bed to running. It might give some inspiration!

[HopeSprings]

I'd love to hear too.

[toddm1960]

Sorry but if this was for real do you think there would be anyone left with POTS?

[sue1234]

Todd, I know. That's kind of what I was wondering earlier--IF our hearts are smaller because of POTS, and an exercise regime would get it up to par, and make us "well" enough to function again, then I think that knowledge should be forced upon all cardiologists and neurologists. That way when we are their patient, instead of throwing band-aid meds at us, they can say "we are going to have you do this exercise plan. It might be rough, but studies show it will cure you". I think we need to know if it really would get the majority of us functioning. And when I say functioning, I will gladly take a 50-75% functioning from where I'm at!

Also, I wonder if any of their patients were hyperadrenergic POTS. I wonder if the outcome would be the same.

I guess what I mean is, if this was a true cure, then I will feel like we are being "neglected" if medicine doesn't study this in more depth and prove it in a larger POTS population. That would be like neglecting to give a cancer patient chemo or whatever therapy they needed for a chance at life.

[firewatcher]

Yes, this IS for real and it IS helping certain patients. The original group was very small and all their autonomic tests were normal. Dr. Levine IS conducting a much larger study currently and there are forum members who are participating. I was ready to apply when my GP forbade it (if I wanted to keep him as a doctor.) My ANS tests don't look anything like the patients in Dr. Levine's study, many of ours don't.

I know personally, that exercise helps, but it is no "cure," at least not for me. Dr. Levine's theory on this may not be the "right" one for some of us, but none of the specialists are any closer than he is. I think that much of the anger that has been generated by this study was his careless use of a cartoon name for a serious condition that has crippled many lives. Unfortunately, that carelessness simply promotes the idea that our problem is our attitude and not our bodies.

[futurehope]

Hi, Handmadebyemy,

I so want to talk to you and see how you're doing with the program? Maybe you could PM me your phone number?

As for my opinion (who asked me anyway?), I was doing an exercise regimen for years when I had an attack of tachycardia during one of my walks. I freaked out, and stopped moving for a long while after that. My POTS came on full force a few years later, during which I did nothing much, just researched and joined this forum and found a doctor who understood.

My take on it is.......I am not cured by exercising. My POTS is still here, I still have orthostatic intolerance, but.....the exercise definitely improves my quality of life. I'm thoroughly enjoying the challenge. I'm watching my heartrate on the treadmill and the elliptical machines. I stop if it is getting too high. I've been exercising in earnest since the beginning of the year.

Now, that being said, I believe that "setbacks" can happen, especially after things such as an illness, additional stress, lack of sleep, change of meds, whatever.

For those of you who might have a thyroid situation, I'm now researching about thyroid hormone supplementation since I am on Synthroid. I am finding out the pills do not act like my thyroid would. Duh! I may not be converting the pill form of the hormone to a usable form, and this has repercussions on all body systems. It is very difficult to figure out how much hormone I need. But, that's another story...

I would not go gung ho on an exercise program unless a doctor has cleared you for it. You may have a medical condition that prohibits it.

But, I would like to talk more to people who are exercising. Hi, yall! I hope we can all keep it up without crashing.

[toddm1960]

I agree 100% that this needs to be placed right along side beta blockers, helps some, makes others worse and in no way should be looked at as a cure. This is my only point.

[firewatcher]

I agree 100% that this needs to be placed right along side beta blockers, helps some, makes others worse and in no way should be looked at as a cure. This is my only point.

Amen, brother!

I get so tired of docs telling me that their way is the ONLY way there is and that the rest don't know what they are talking about!

[toddm1960]

Claims like this drive me crazy........27 patients and he claims to have cured pots with exercise. We need to put his brain to work on curing cancer now.

[firewatcher]

Claims like this drive me crazy........27 patients and he claims to have cured pots with exercise. We need to put his brain to work on curing cancer now.

It is that "CURE" word that irritates me. Really?! Once they stopped exercising, those 27 didn't have their POTS come back? Really?

[juliegee]

I'm certainly not cured just saying that exercise has been invaluable in my recovery. I totally agree that it is NOT appropriate for everyone & not everyone can benefit from it.

I've had mild symptoms of dysautonomia my whole life- passed out a few times, lots of aches and pains after any type of exertion, fatigue, headaches, coat hanger pain, nausea, etc. About 7 years ago, I began getting hives that actually turned into boils. I also had severe allergy symptoms- constant runny nose, sneezing & coughing attacks. At times, it felt like I had to force myself to breathe. My body could no longer do it automatically. My chest and throat were very tight at times. I got waves of hot flushing. Then, I started getting unbelievable runs of tachy, out of the blue. They were so severe, I almost lost consciousness. I had to lie down or pass out. My resting HR was around 100- 110. My HR would rise 60 BPM upon standing.

All of my allergy testing was negative. My IgE was low. My allergist still treated me appropriately regardless of what the testing showed. He even gave me an epi-pen, which I had to use on several occasions. The first time was terrifying. My HR was well over 150 BPM. I was about to lose consciousness and wasn't sure if I was having anaphylaxis or simple tachycardia. (Epinepherine is the WRONG thing to do for tachy.) My husband stuck my thigh for 5 seconds as opposed to the prescribed 10...to see if it helped or hurt. It helped. All of my symptoms stopped immediately. That was eye opening. My allergist worked out a regimen that ultimately controlled my symptoms- an H-1, H-2, singulair in the AM and a strong H-1 at night. I started with doxepine, now I use atarax at night. After months of remaining on this regimen, my symptoms stabilized.

When I first tried to exercise, I was pathetic. I took my husband to lean on, my son as back-up, and my dog to sound the alarm if needed- along with a wagon to hold my emergency meds, water, a snack (for hypoglycemia attacks), epi-pen, etc. We proceeded slowly around the block. If a wave of tachy struck, I would have to sit or lie on the side of the road with my dog licking my face. I kept at it, slowly losing my "crutches" one by one till I could eventually walk around my block and eventually my whole neighborhood pretty much symptom-free.

The antihistamine regimen worked to stabilize my symptoms, BUT also helped me gain weight H-1's are powerful appetite enhancers. I'd always been very small probably due to my dysautonomia; but over the years, I'd gained 30 lbs. In June of 2009, I took a HUGE step and joined a local boot camp. For one hour, 3 times a week, I pushed myself beyond what I thought I was capable of: push-ups, starbursts, squat thrusts, jumping jacks, weight-lifting, running, etc. I was terrified at first. I flushed mightily, and waited for the anaphylaxis to follow. As long as i kept up my meds, it never progressed beyond flushing. I drank 5 times as much as the rest of the women in my class, but the hydration allowed me to keep pushing. I discovered a competitive part of myself that I though was buried for good. I loved when I could outrun college girls- half my age I dropped the weight and discovered I LOVED running. I no longer attend the class- kept that up for about 1.5 years. I now run 3-4 times a week, about 4-5 miles a shot. I try to do yoga/weight lifting on my days off.

My resting HR is around 58-60. My standing HR (with meds) is around 80. If I were to stop my meds, I would go right back to being fully symptomatic. (I tried last summer ) If I stopped exercising, I suspect that my resting and standing HR, and weight would also creep up. I still get flares. I had an awful one this Decembe when I tried a calcium channel blocker for my severe reynaud's. Exercise is not a miracle cure, but has been very helpful for me- along with the RIGHT med regimen. I'd encourage anyone to slowly try- with your doctor's approval.

[ladyt]

I agree 100% that this needs to be placed right along side beta blockers, helps some, makes others worse and in no way should be looked at as a cure. This is my only point.

Claims like this drive me crazy........27 patients and he claims to have cured pots with exercise. We need to put his brain to work on curing cancer now.

Well put todd, very well put...

My cardio have never said i have a small hart, maby he didnt whant to offend me

But he did belive that my fitt body and lots of exersis did make the begining of the illnes grow slower.... But slowely the more i exerisied the sicker i would gett. I kept trying difrent types for years, not working. Then i desided to stop trying. Only thing i would keep up was the headtraining...

headtraining is me laying in my recalined bed or chair, closing my eyes, and pretending to exerise in some form or other. I read some where that this could increes the mucsel mass, probl not. But i do it still... then my other thing was trying micro training and getting some few hours a year at the hot pool in the hospital.

The micro training didnt work, the hot pool was very good for the mucels and joint pain, and warming my cold body up. But not more than that. Then i stardted thaking phenegran every nigth (for sleep, but it an allery pill). And the last year I have been abel to do some micro training, and at times be alilte more active in evryday life. I am not getting better, but still in some ways i am getting stronger. Sorry i am not that good to explain things. More bad days and bad weeks are ust as bad as they used to. But I can se the faint shadow of the mucsels i onces had, And that feels great

I wish i could go in the hot pool every week or so, that would have done a great difrent for me. I did try to ably for difrent rehab facilitys etc, but they either said i was to healty or to sick .... It would be more honest if they said, you have somthing strange that freaks us out

Or i wish i could go to a semi hot pool, but i do need the lifegaurds, have a tendencie to gett very ill on the way out of the pool etc

Sorry drifted off into my own stuff here....

I am very happy for does of u that have benefitt from exerisise etc etc ..... I think most of us should start on training like that when followed closely by a doc. many of us dont have that sort of doc, health care person..

And many of us are not on the rigth meds to benefitt from training....

I hope to find some better working combo of meds. But not sure how to do that rigth now. i did stuble over phenegran,so maby i will have a lucky stuble again soon..

If u doing the program will keep the rest of us posted that would be great... Spesaly if u actuly gett cured.. About that, some people actually gett better on their own. From what i can read it seems to be the one having it when young and after viral infection. So how can the doc tell if its the training ore ? sorry drifting again ...

If any made it to the end , sorry for the rambling

Best of luck all and have a lovly weekend

[Sarah4444]

Do you know where I can get a copy of the article written by Dr. Raj? I would love to see it. I did see Dr. Raj while at Vandy, he was nice but I only saw him in a research compacity. He was not my treating Dr.

What I read was more of a short article he wrote in response to the "Grinch Syndrome" article, an editorial kind of thing. I'll search around and see if I can locate it - I have read so many things I lose track.

[Sarah4444]

For what it's worth- I was unable to exercise prior to finding my MCAD regimen. Heck, I was unable to even get out of bed at times . I could NEVER run. I can now. I started at age 47- been at it for almost 2 years. It has helped me in my recovery tremendously- 15 to 20 miles a week. Deconditioning did NOT cause my illness. Exercise has helped in my recovery.

Julie

I just wanted to agree with this strongly. I have always known that exercising helps me function at my best, but within the last ten years, whatever illness in underlying all this got worse to the point that I was unable to exercise. I kept trying to change what I did for exercise to accomodate my decreasing ability levels, to the point of installing a salt water exercise pool in my garage, but I couldn't get my body to work well enough to use it - my arms and legs would stop working and I would just sink. Actually, when I think about it my ability to exercise has been wearing down for a very long time.

AFTER finding out about POTS and MCAD and starting the meds for them, I was able to start swimming two minutes a day but it was a struggle (this was last summer/fall). By the end of the two minutes my limbs would stop working and I would feel terrible after each session. But I was so deconditioned I couldn't stand it so I have tried to persevere. Now I can swim (it's not vigorous and I wear a float belt to take stress of my back) for 20 minutes a day, and I usually feel less terrible after than I did before. I still have to watch my pain levels and rest aftewards though - it's a delicate balance.

Overall, I feel much better than I did last fall when I was in what Julie aptly describes as a state of "chronic low grade anaphylaxis", which for me seems to either be the same as or coincide with very severe POTS. However, I am still severely disabled by orthostatic intolerance - just not feeling like dying all the time. I do hope that things improve, but my impression is that this illness has been there all along and when I was healthier and able to exercise I have done my best. I am hoping that if I am able to continue swimming, I will then be able to withstand dry-land training again. Now, when I try to walk about 1/2 mile, often by the end I am almost passing out and my vision is tunneling. I hope if I can keep trying, I will also get better with this too.

But, even if I can manage some exercise and increase my sense of well-being and fitness level, the illness will still be there, making everything a struggle. That is what bothers me about the Grinch article - it's not trying to address why I feel like this in the first place and what could be done to help, but putting all the responsibility for recovery (and, it feels like, for being ill in the first place) on me. There is enough of the "blame the patient" happening to POTS patients already and I don't feel these authors took this into account when deciding on the somewhat flippant tone of their article. It reinforces the idea that this isn't really so bad, not such a big fuss and adds barriers to us receiving the diagnoses and care we deserve and require.

[toddm1960]

In the long run I do think that your underlying cause of POTS will determine which treatments work or not for you. Until a single causative thing thing is found to trigger dysautonomia (maybe XMRV) there will never be ONE treatment that works for all of us. That's why I really like Julian Stewart's research, it's the direction we need to follow. He's looking at ALL types of POTS, though I wish at times he would study older patients.

[sugartwin]

This study....

I'm really surprised he found a publisher for it. My main issue isn't even the "Grinch Syndrome" issue or the fact that some might interpret it to mean exercise is more useful than it is. I have real issues with the empiricism of it.

Maybe I should do a study on POTS and get together an absurdly small sample size and cherry pick my data too? Keep an eye out for my study on POTS patients who are between the ages of 18-21 where I conclude that they just drink too much Red Bull. Oh, and my 'protocol' where I slowly transition them onto a regimen of chamomile tea. New England Journal of Medicine, here I come.