Cardiac Issues In Pots - "normal" Or Not-So-Much ?!

[AllAboutPeace]

A current thread about cardiac symptoms has me thinking about this...

I've always been a little uneasy with the medical reports/articles that cardiac testing is "normal" in Pots patients. I understand they are really saying that the basic structure of the heart is fine...but I think it's worth some clarification in the literature. For example, when they list symptoms why don't they indicate that "other rhythm issues or irregularities may be present" {aside from the standard sinus tachycardia}...or "tests may indicate changes in patterns, although usually benign...". Maybe the info is out there and I have missed it. I just know that before I joined this group, my understanding from the research was that cardiac symptoms (aside from tachy and chest pain) were not supposed to be part of Pots, but I've since read soo many posts about what others experience, which leads me to think otherwise.

After the sudden onset of Pots, I had a pronounced murmur, mild mitral regurgitation, ecg changes (inverted t-waves), a stress test that my doc said indicated cardiomyopathy, irregular rhythms that nurses picked up on on my nighttime telemetry and various other ones I've felt {again aside from tachy and brady}, my EP/cardiologist says I have "electrical issues" which we are monitoring, etc. I realize all of these issues are not serious, and my cardiac testing was presented to me as "normal" - even though it is an abrupt change from before. My EP considers the electrical issues as separate from Pots, but I have a hard time viewing it that way because for me it happened at the exact same time as my onset and so many of us have these and other irregularities as well.

Does anyone know if these issues are currently thought of as under the Pots umbrella? Any thoughts regarding your own experience or in general??

[joyagh]

cardiomyopathy is NOT normal and can be really dangerous and life threatening. I'd follow up on that and make sure if you have it or not. That's not something to mess around with.

you should probably have a nuclear Echo.

[AllAboutPeace]

Joyagh,

Thanks for your concern...sorry I didn't even think to add this in . I did have a follow up echo in which they ruled out cardiomyopathy - so whatever my heart was doing during the stress test was not due to that.

[Canadiangirl73]

I also have some documented irregular rhythms which I was told are benign because of their nature and/or duration. Three EPs at a cardiac facility where I live ,who know little about dysautonomia, told me they are most likely related. However, when I saw a POTS specialist he told me this wasn't the typical presentation for POTS patients for they only have sinus tach. IMHO, I believe they are one and the same. I NEVER had a flutter, a skipped beat, or any other weird heart beat that I could feel until two months after the onset of my dysautonomia (very acute onset). Also, I notice my irregular rhythms can go away for weeks and then come back to annoy me for a while when my other POTS symptoms are very bothersome. As far as inverted T-waves are concerned, I get those too from time to time. I recently had a chance to review all my ECGs (a whole lot!!!) and noticed flat or inverted T-waves when my POTS symptoms were intense. I also had ECGs performed a few minutes apart first lying down, then standing up. Guess what? My T-waves get inverted when I stand up but are fine when I lie down. That is not a coincidence. I dug deeper and discovered it is a common finding in POTS patients. Here's a study I came across: http://www.ncbi.nlm.nih.gov/pubmed/17617070

[Mytwogirlsrox]

I had inverted t-waves also. My Dr suggested that it was the lead placement was wrong on my small frame. I've never had one inverted t-waves since that EKG. Now I'm curious, would that show on a holter monitor? I've had numerous holters

[imapumpkin]

I can only guess about this, since my doctors can only guess about it at this point, but I feel cardiac issues and POTS are related. POTS doesn't cause cardiac issues other than tachy and chest pain as you said, but I am told that my mitral valve prolapse could be making my POTS much worse and my POTS could in turn be making my MVP worse (extra stress on the heart from all the tachycardia and stress in general about being sick). I will be having surgery to repair the valve next month and both my cardiologists and one of the country's top surgeon's who I had a consult with (but who will not be operating on me) said that they believe my POTS will get better after the valve is repaired. I will report back to the forum after the surgery and say how the repair affected or did not affect my POTS.

That being said, I have to say that looking back, my first clues to having POTS directly coincided with my discovery of my MVP. I doubt they would have found the MVP had I not had chest pains that I'm sure were caused by the POTS, which may be caused by the MVP. yowza i'm dizzy. Anyway... my POTS hit it's worst in the past 5 months, and my MVP which til last March was under control went from A-OKAY to YOU NEED HEART SURGERY, so I can't help but think they are connected somehow. I also did not have a pronounced murmur until my POTS got much worse. It sounds like a chicken or the egg situation, but in this case, I'm fairly sure that my cardiac issues are contributing to my POTS.

[joyagh]

glad to hear your echo was clear. Mine was too, we thought I had peripartum cardiomyopathy. scary.

I have tons of heart symptoms: palps, tachy, brady, etc. I think it's all due to my adrenaline levels and surges, but I don't really know. I have 2500 PVC's per day. the BB's help, but don't elimate them. my BP also fluctuates greatly. it's good to get everything checked out. if you're cleared of cardio pathology, then the heart symptoms are part of POTS.

[kitt]

I was told by a doctor that most pots patients have 'normal' hearts (with the exception of atrophy), but that pots is 'a neurally mediated heart condition.' Many people have gone to a cardiologist with pots and gone through testing and been told 'your heart is fine.'

Am lucky to have found a doctor well versed in dysautonomia.

But if a doctor blew me off with pots, I'd ask him, "Are you knowledgable about neurally mediated heart conditions?" He would have to say, 'no.' I'd give him literature on dysautonomia and ask if it's something he's willing to learn about it!

Am in no way discounting those that have some abnormal heart issues, but the majority of pots have normal hearts. Not including size due to atrophy.

Am just frustrated for all the people whose doctors are ignorant about dysautonomia and unwilling to learn.

[AllAboutPeace]

Thanks for the responses, I appreciate knowing that I not the only one that feels this way. It is hard to accept that a sudden change like that isn't related. For me, that's where the appeal of a holistic doctor comes in (although I've never been to one); the philosophy that everything is connected really makes sense - especially with Pots (since it affects us in so many ways). I wish the medical system worked that way instead of having to see different docs for every problem. How long would the docs have to go to school for that one though...to specialize in everything

Canadiangirl - It's great that you are able to view all of your ecg's. Some days I wish I had them and other days I'm not sure I want to. That's really interesting with regards to the T-waves. Hmm, I've never had a standing ecg, but I did do a lying-to-standing on my last event monitor, just so they could see what the tracing looked like on a 50 bpm jump in HR. I always assume they'll tell me if anything looked unusual, but I can't say I have a huge amount of faith in that anymore. I had a copy of it briefly to bring to an out of town doc and am now wishing I made a copy of it for myself.

Mytwogirls - it should definitely show on a Holter

Pumpkin - I really hope your surgery improves your symptoms. It is impossible to know how the MVP and Pots have affected each other. It's been almost a year since I've had an echo and I'd really like to see how things look at this stage.

Joyagh - How do you manage with that many PVC's /day?? My arrythmia's left me for awhile, but the last few weeks have been back and have been worse the last few days.

Kitt - It makes sense that Pots is a 'neurally mediated heart condition' and I do plan to discuss this with my EP when I see her next. She briefly mentioned that she could do surgery to fix the arrythmias (if they continue to be an issue), but if it's not an issue originating with my heart then there really isn't any point. Also, I've heard that it can make Pots symptoms worse.

[Iheartfrogs217]

I believe that cardiac issues and POTS relate completely! I was diagnosed with POTS about two years ago and before that I didn't have palpitations or irregular rhythms, besides the average PVC here and there. After the diagnosis of POTS I began having tons or palpitations and irregular rhythms. None of them fatal, to my knowledge, even though they feel like it sometimes. :/ I also know of some other people who have POTS who have fainted from irregular rhythms. I hope that answers your question! God bless and take care!

[KareBear]

My doctor had told me that my cardiomyopathy comes from the constant tachycardia that has been untreated for my whole life. The tachycardia is from POTS so that to me is related. He said that the constant over working of your heart for so long can wear it out causing the cardiomyopathy.