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Got Heart Failure From Pots - Anybody With Info?


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I have had CFS and hyperadrenegic POTS for at least 20 years. I now have left ventricular dysfunction = heart failure.

Treatment for this is RESTRICT WATER AND SALT! Guess how that is going? lol.

My cardio says that this is the worst cardiac combo to treat in the book. But he says POTS often leads to heart failure 'cause of the up and down BP and long term high BP's effect on my left ventricular.

I started to black out today. I need an IV. BUT if I get one, then I cannot breathe afterwards when walking, stairs, lying down, as the fluid goes to my lungs from the heart failure. I have had success with a small IV, but nobody will give it to me any longer now that I have heart failure because they are so worried about being sued.

Anybody else? Any advice? No help so far from Cleveland Clinic, Mayo MN and JVille, Emory in Atlanta. Need a doctor that knows POTS and cardiology. I'm in Atlanta.

Many Thanks!

Elegiamore

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Unfortunately, I think it is going to be Vanderbilt. They are mostly cardiologists. There is no one here in Atlanta that has a clue about POTS. You might try Birmingham, AL. They have the Mitral Valve Prolapse/Autonomic Dysfunction center associated with UAB. I have never seen any research that states that the rapid, frequent BP fluctuations causes heart failure, I wonder where your cardio is getting that. :)

Good luck and keep us posted!

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Just re-read your profile...extreme insomnia: are you sure you don't have apnea? That would cause heart failure. Fixing that may help slow the progression. There is an excellent sleep doc here in Atlanta. PM me if you want his name.

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My Dr. Ben Levine in Dallas is a Cardiologist that Specializes in POTS. I really think he could help you. I personally know one woman who's heart was only functioning at 20% who got her back to functioning a normal life.

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You could try Dr. Thomas Deering in Atlanta who has some knowledge and would be local to you but if I were in your shoes I would opt for evaluation and consult at Vanderbilt----particularly Dr. Raj since he is a cardiologist and ANS specialist. He might need to get other cardiac evaluation done but I have always had great experiences with Vanderbilt with ANS specialists and anyone I saw in the "normal" cardiac center.

St. Joseph's in Atlanta also has some cardiologists familiar with POTS but at the moment the names are escaping me. Emory is NOT the place to go for what you are dealing with.

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I can see where your cardio thinks that POTS would have caused this, looking at it from the cardiac viewpoint. However, I have not seen anything that states heart failure as the ultimate prognosis for POTS. I would definitely get another opinion, you life is at stake (as you well know!) Vanderbilt or University of Alabama, Birmingham (2nd choice) are where I'd start calling. Your doctor can get you in much faster. Please keep us posted.

Postural Tachycardia Syndrome associated with peripartum cardiomyopathy.

Kimpinski K, Iodice V, Low PA.

Department of Neurology, Mayo Clinic, Rochester, MN, United States.

Auton Neurosci. 2010 Feb 16. [Epub ahead of print]

Here we describe a 26-year-old woman who developed peripartum cardiomyopathy characterized by fatigue, poor exercise tolerance, and palpitations. Initial echocardiography showed global left ventricular dysfunction with an ejection fraction of 40%. Subsequently, the patient developed a resting tachycardia associated with symptomatic postural tachycardia. A diagnosis of Inappropriate Sinus Tachycardia was made based on Holter monitoring studies with an average heart rate of 121beat per minute (bpm). Standard autonomic evaluation confirmed the diagnosis of Postural Tachycardia Syndrome. The cardiomyopathy subsequently resolved (ejection fraction 60%, normal left ventricular function). However, both the postural tachycardia and sinus tachycardia persisted. Copyright ? 2010 Elsevier B.V. All rights reserved.

PMID: 20167544

Dysautonomia due to reduced cholinergic neurotransmission causes cardiac remodeling and heart failure.

Lara A, Damasceno DD, Pires R, Gros R, Gomes ER, Gavioli M, Lima RF, Guimar?es D, Lima P, Bueno CR Jr, Vasconcelos A, Roman-Campos D, Menezes CA, Sirvente RA, Salemi VM, Mady C, Caron MG, Ferreira AJ, Brum PC, Resende RR, Cruz JS, Gomez MV, Prado VF, de Almeida AP, Prado MA, Guatimosim S.

Mol Cell Biol. 2010 Apr;30(7):1746-56. Epub 2010 Feb 1.

Department of Physiology, Institute of Biological Sciences, Federal University of Minas Gerais, Av. Ant?nio Carlos 6627, Belo Horizonte, MG CEP 31270-901, Brazil.

Overwhelming evidence supports the importance of the sympathetic nervous system in heart failure. In contrast, much less is known about the role of failing cholinergic neurotransmission in cardiac disease. By using a unique genetically modified mouse line with reduced expression of the vesicular acetylcholine transporter (VAChT) and consequently decreased release of acetylcholine, we investigated the consequences of altered cholinergic tone for cardiac function. M-mode echocardiography, hemodynamic experiments, analysis of isolated perfused hearts, and measurements of cardiomyocyte contraction indicated that VAChT mutant mice have decreased left ventricle function associated with altered calcium handling. Gene expression was analyzed by quantitative reverse transcriptase PCR and Western blotting, and the results indicated that VAChT mutant mice have profound cardiac remodeling and reactivation of the fetal gene program. This phenotype was attributable to reduced cholinergic tone, since administration of the cholinesterase inhibitor pyridostigmine for 2 weeks reversed the cardiac phenotype in mutant mice. Our findings provide direct evidence that decreased cholinergic neurotransmission and underlying autonomic imbalance cause plastic alterations that contribute to heart dysfunction.

PMID: 20123977

Amelioration of cardiac remodeling in congestive heart failure by beta-adrenoceptor blockade is associated with depression in sympathetic activity.

Machackova J, Sanganalmath SK, Barta J, Dhalla KS, Dhalla NS.

Cardiovasc Toxicol. 2010 Mar;10(1):9-16.

Institute of Cardiovascular Sciences, St. Boniface General Hospital Research Centre, Winnipeg, Canada.

This study investigated whether improvement in cardiac function and attenuation of cardiac remodeling by some beta-adrenoceptor (beta-AR) antagonists were associated with a depression in sympathetic activity in congestive heart failure (CHF) due to myocardial infarction (MI). Although cardiac dysfunction, hypertrophy and dilatation as well as increased plasma level of catecholamines are known to occur in CHF, the relationship between these parameters is poorly understood. Three weeks after occlusion of the coronary artery, rats were treated daily with 20 and 75 mg/kg of either atenolol or propranolol for 5 weeks. Sham-operated rats served as controls. Both atenolol and propranolol at 20 and 75 mg/kg doses attenuated the MI-induced cardiac hypertrophy, increases in left ventricular (LV) end-diastolic pressure, LV end-systolic volume and LV end-diastolic volume as well as depressions in LV systolic pressure, LV fractional shortening and cardiac output. PR interval was decreased and QT( c ) interval was increased in CHF; these alterations were ameliorated by both atenolol and propranolol. The increased level of plasma epinephrine in CHF was also depressed by both low and high doses of atenolol and propranolol whereas the increased level of plasma norepinephrine was reduced by high but not low doses of these drugs. The results indicate that the beneficial effects of beta-AR antagonists on cardiac remodeling and heart dysfunction in CHF may be due to the blockade of beta-ARs in the myocardium and a depression in the sympathetic activity.

PMID: 19949891

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That is true that there seems to be no published evidence that POTS progresses to heart failure. But really, how much study has gone into the long term effects of POTS? Has anyone studied POTS patients who have had it for 20 years?

Most research seems to be done on teens with POTS and apparently most of them improve. What happens to POTS patients who do not improve, and actually continue to have this disorder for many years. Congestive heart failure is probably a predictable outcome for a heart that has been working too hard for many years.

I just think that "no evidence" at this point doesn't mean much because the research hasn't been done. People were not even being diagnosed with POTS 20 years ago.

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I have had CFS and hyperadrenegic POTS for at least 20 years. I now have left ventricular dysfunction = heart failure.

Treatment for this is RESTRICT WATER AND SALT! Guess how that is going? lol.

My cardio says that this is the worst cardiac combo to treat in the book. But he says POTS often leads to heart failure 'cause of the up and down BP and long term high BP's effect on my left ventricular.

I started to black out today. I need an IV. BUT if I get one, then I cannot breathe afterwards when walking, stairs, lying down, as the fluid goes to my lungs from the heart failure. I have had success with a small IV, but nobody will give it to me any longer now that I have heart failure because they are so worried about being sued.

Anybody else? Any advice? No help so far from Cleveland Clinic, Mayo MN and JVille, Emory in Atlanta. Need a doctor that knows POTS and cardiology. I'm in Atlanta.

Many Thanks!

Elegiamore

Elegiamore - Wow. Sorry to hear of your new diagnosis. It does sound like a very tricky combonation to manage. I hope you are able to find someone knowlegable about both.

Take care,

Summer

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I agree that there are no studies indicating the final mortality or complications from long-term POTS and that it has not been recognized and studied long enough to know what it will do to the body. There are also no studies indicating the obvious endocrine abnormalities that occur with POTS. They just haven't gotten there yet. We don't really have recognized and agreed upon subtypes yet! Heart failure, pulmonary hypertension, diabetes and Addison's may all be final outcomes for long-term POTS. The doctors who COULD speculate certainly aren't going to give us the bad "what-ifs" when we see them, they are hoping that we are in the "will recover" category. I recently read a study that said that hyper-adrenergic POTS patients would need life-time medication for control and that quality of life would decline, but he did not cite an article that supported his conclusion.

Of course there will always be the chicken and egg debate: is POTS causing the abnormality or is the abnormality causing the POTS (which is the presenting symptom.)

Either way, and regardless of any study, Elegiamore HAS heart failure and it needs to be treated...and treated with dysautonomia in mind. It does not matter if it is the chicken or the egg, she's got to find the right doctor to control her symptoms and assist with her quality of life.

It sounds like a razor's edge to walk and you have my support! I'm just sorry that any of us have to deal with any of this!!!!!!

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Well said, firewatcher and I certainly should have added that I am sorry you are faced with this Elegiamore.

I know there have been a few other members on here with both heart failure and POTS. I have always thought it surely would be hard to manage the two b/c of the fluid issue. I hope you can find a good doctor who can manage both issues.

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Sorry about your current issues...

I had postpartum cardiomyopathy before my Pots DX heart function was 45% and they couldn't treat it because B/P was very low. At that time cardiologist suggested florinef that was before they had a clue what was going on totally with me. I didn't take any meds and eventually it did resolve in about a month, it lasted a total of 3 months. I would say it is a very complex problem to handle, but I think it can be done.Some of new mothers that had PPCM that I researched had heart transplants ***worse case scenario****but I wish you best in finding the best treatment for recovery.

Lissy

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I have a close friend going through this Eligiamore, and I can see how hard this is to live with. I hope that somehow you have a doctor help you manage this better so you can have a decent quality of life. I pray for my friend, and wish this would go away for you and her.

Sending you lots of love, prayers, and support.

Maxine :0) flowers.jpg

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Elegiamore~

I sorry to hear that you're going through this. I know at least some of the difficulties you're experiencing, because I had similar issues. In my case, the dilated cardiomyopathy/congestive heart failure came FIRST. After taking Coreg and Coumadin for a little over a year, and getting a pacer for my bradycardia, I was finally able to get off the meds. About a year later, I got sick again and was diagnosed with dysautonomia/severe OI/NMH.

Now my organs are slowly failing one by one, and it appears that I have multiple-system atrophy. My doctors believe I have amyloidosis, which are abnormal proteins that attack your organs and are a form of cancer. I'm currently going through testing for this. My kidneys, gallbladder, heart, brain, and recently I found out that my liver is also diseased. I think that it's the amyloidosis that's behind all of my symptoms.

Please take good care of yourself, and read up so you're as knowledgeable as possible. You may want to try Mayo or Cleveland Clinic if you don't feel you're getting appropriate help. You're in my thoughts and prayers!

My best,

Jana

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Guest tearose

I am so sorry Elegiamore.

I only can share that I have had times when I had pericardial effusion and there was talk of needing to go into the sac around my heart and remove the fluid with a needle... Fortunately, my body was able to absorb the fluid over time and I did not need the procedure.

It is my hope that your heart condition becomes manageable and not progressive. I have to limit my salt intake because of lymphedema so I do understand the challenge of trying to manage POTS with limited salt.

I pray that you will find your way through this current trial and will find some improvement in your condition.

With support and hugs,

tearose

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Dear caring friends,

THANKS THANKS!!! I needed a virtual hug and confirmation of my own thoughts and your ideas.

After reading the posts, I think Vanderbilt is the next place to go. Better yet, BCBShield of GA considers it in network and I am covered! As Mack's Mom and I have discussed years ago, Atlanta is zilch in the way of POTS help. Also - Dr. John Deering - y'all told me about him about 2 years ago. Called up there and found out that the PAs that helped him handle POTS were gone and his nurse said that he really doesn't treat POTS without them.

Thanks for the all articles on sympathetic system screwups causing heart remodeling and CHF! Very helpful and thoughtful. And ramakentesh (you always seem so knowledgeable), what can I say? I have it and I didn't have it in 2004, at the last echo. The point of my post was to find out if other ppl with POTS have it; looks like they don't.

Firewalker, thanks for pointing out to all of us that we are trailblazers with many unknowns ahead of us (or not); helped me feel less "abnormal."

The comments on Sleep was very bright - thanks. In fact, I had very, very severe insomnia during 2005 and 1/2 of 2006 - went to world renown expert, on four pills a day to sleep and no luck. Finally better in 2007 on. This COULD have started some of this, so good idea. I did not have sleep apnea at my last test.

Jana, what a nightmare you are walking through! I send my best wishes and sympathy; you are ALL SO generous to step aside from your own severe suffering to be supportive. Sending you good vibes right now. Lissy, your story was relevant and encouraged me - thanks.

POINTS:

I have left ventricular failure - this is thickening of the left valve from over pumping - the Yahoo CHF group says CHF is caused by high BP AND constantly altering BP and tachycardia. Who knows...

My first syncope was in 1974 when I was 19 years old. I HAVE made it to 55 yrs old now. So let's face it - surely 37 years37 of high/low, uncontrolled BP and 20 years of untreated POTS (wasn't diagnosed until 1996) should be taking its toll.

I stated I have CFS. My CFS dr. says that 50-70% of all CFS patients have some level of POTS. Dr. Paul Cheney, the "co-discover" of CFS, now believes that CFS symptoms are all left ventricular failure and POTS - and he has LOTS of proof and is treating it. BUT he wants $8000 for the first visit (no insurance) and $1400 for a phone followup. Gulp.

I have HYPER NE - I mean, over 5000 mg in my blood during tilts - Cleveland Clinic told me in 2003 that it was the highest NE level they had ever recorded in a POTS patient. What a prize to win! So my story should vary from others.

Let's hope I am the only one with these conflicting conditions. But I wanted ppl to know it was a possibility and see if anybody else was in that same boat. Again, THANKS and ((((((((((((((((hugs))))))))))) to all. Elegiamore

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are you sure your cardiologist classified you as a "heart failure" patient? Generally there are strict guidelines for diagnosing heart failure. Heart failure basically means that the heart as a whole is not an efficient pump (The "pump" is what is termed EF - or ejection fraction -- which represents the hearts "squeezing" capacity. anything under 40% for an EF can be classified as heart failure or cardiomyopathy. normal EF is generally between 55-70%.

from your description, it sounds like you have left ventricular hypertrophy (??) which can definitely alter heart function. did they say what your "EF" (ejection fraction) was ?

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With norepinephrine that high, have they double checked you for a pheo? I know there is a certain limit that when on a tilt test, if it is way over an average high, they go on to test for a pheo. If you haven't already been tested, request it. Especially since you had "the highest level they've ever had in a patient"!

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wow! I just picked up on the 5000 NE during your tilt!! i'd second and third what others have said to check for pheo again ..... especially with a number like that! I think mine was only like 700 ..... WOW.

so sorry you're going through all this....

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Pals,

I was tested for pheos a week after I got these readings - negative. And then again four other times. I DON"T HAVE ONE. I even made a special trip to the pheo world expert, Dr. Bravo, at the Cleveland Clinic and had no pheo (and no cash when I was finished - lol).

On the other hand, he told me that anybody with 5000 mg of NE in their system when they exert and stand up would never live more than 7 years. That was in 1996. It's 2010 now. :)

As for the LVentricular stuff, they are kinda confused as my readings show the worse end of Stage One CF but my symptoms are Stage Three. I have to have enough salt and water to maintain my POTS so I have more symptoms than they would like.

THANKS for sharing your smarts. Everybody feel good this weekend.

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Dr. Michael Aikens in Opelika, AL (about 2 hours from Atlanta) is my treating cardiologist (he diagnosed me with dysautonomia in 02). Well worth a phone call to see is he can help- he trained at Kirklin Clinic (UAB). If anyone can find an out of the box way to help you- he can. I am am extremely unusual case and he has been fantastic with me. Best of luck- sounds scary but don't lose hope.

Carmen

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