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MissMermaid

PVCS, PACS and skipped beats

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I have ectopic beats. Premature heart beats that can be quite uncomfortable. I have had many heart tests and have told that these are benign and even normal and common, most people just don’t feel them. 

when I asked my cardiologist do I have these heart beats because I have pots he simply said ‘probably’

Have always been very curious if others with pots or autonomic dysfunction have these too.

Please let me know if you have any heart rhythm symptoms! 

Hope you all are doing well xx

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Hi,

I was diagnosed with very extreme ectopic beats, I wore a 24 hour heart monitor halter and had approximately 98,000 beats, ( normal range), my PVC and PAC count was 22,000.  One out of four, cardiologist said not very dangerous but extremely troubling as the sensation would disrupt my sleep and my waking concentration.  We tried 3-4 arrhythmia meds before hitting on Propafenone.

Now almost no ectopic beats, I am very happy with my results.  Caution, The Med has lots of interactions and you need to use it for a while to find good dose and to see if it is effective.  Been on it for  2 years.

Good luck, there are options,

Alex

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Wow, that’s a lot of ectopics. @Alex D. I am so glad you have found something to help you. Mine are not that frequent so no treatment is the best treatment my cardiologist says. But very uncomfortable and somewhat anxiety inducing. Thank you for your reply 😊

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I have them fairly often, but nowhere near as much as @Alex D.! I'm glad you found a medication to help with that, Alex! 

I relate to finding them anxiety inducing @MissMermaid. Mine usually make me cough or take my breath away. I've had a few runs of VT in the past, too, but very short — about 7 or 8 PVCs or so in a row. Very uncomfortable and startling.

My cardiologist has told me the same as what you've been told — no cause for concern, even though they feel concerning. 

 

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@MissMermaid ectopic beats are very common in pots and yes, they are harmless. They are a symptom of the overactive ANS. Beta blockers are the most commonly prescribed medication for this, I take carvelidol and rarely have them anymore. In itself they do not have to be treated but since you have pots your cardiologist may want you on a beta blocker anyway. Not all bb’s have the same effect on pvc’s, I tried metoprolol and bystolic before but they did not help as much. 

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6 hours ago, MissMermaid said:

Ectopic beats are awful and would not wish them on anyone but it’s always nice to feel like you aren’t alone

I do not get too many now that I no longer take anything that affects electrolytes, but yes they are definitely unpleasant. Are you on any medication that could be causing or contributing to them such as fludrocortisone, which drops potassium? 

I did get the odd run of palpitations in pregnancy too, whilst I was healthy. 

Magnesium is said to be helpful in reducing frequent ectopics. I did not find this to be the case for me, but keep it around as a good laxative!

B xxx

 

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@bombsh3ll I do not take any medication to my knowledge that messes with my electrolytes although I have read that nexium and an anti depressant i take does deplete magnesium levels. My electrolyte blood tests have always been within normal range. 

I take magnesium daily. I believe it helps the frequency of them. I was in hospital not that long ago and I was given electrolytes and water intravenously and I did not have an ectopic for a whole week! Bliss. 

I am a stress head sadly and I know stress and anxiety does not help them. 

Have always been curious if this is common among dysautonomia sufferers. 

Take care 😊

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11 hours ago, MissMermaid said:

Ectopic beats are awful and would not wish them on anyone but it’s always nice to feel like you aren’t alone 

I used to get ectopics, then I developed Afib, which meant an antiarrythmic (flecainide) so I rarely get them anymore. Since you wouldn’t want to take an antiarrythmic unless you had something more serious than ectopics, there are supplements that help many. I am on a couple of Afib forums and most find that keeping potassium at about 4.5 prevents ectopics. This would mean keeping your other electrolytes in balance with potassium. The easiest way to supplement potassium is food and low sodium V8 (they use potassium instead  of salt) or coconut water are good sources. Others find that l-taurine helps. https://www.ncbi.nlm.nih.gov/pubmed/16797868 Good luck.

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Nothing really gets rid of them, at least not for me. I thought coconut water, taurine and magnesium helped but I am wondering if it was just placebo effect as they are now back with a vengeance.

I would be wary of the antiarrythmics some mentioned as ironically they can actually reduce PVCs but cause more sinister arrhythmia.

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I have also come across a product called Heart calm, which some people swear by. I understand it contains both potassium and magnesium. 

I have not tried it myself as mine pretty much went when I stopped licorice but i think it comes with a money back guarantee if you are interested. 

B xxx

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4 hours ago, bombsh3ll said:

I have also come across a product called Heart calm, which some people swear by. I understand it contains both potassium and magnesium. 

I have not tried it myself as mine pretty much went when I stopped licorice but i think it comes with a money back guarantee if you are interested. 

B xxx

What type of magnesium is used in the product? Usually there's a compound with it, right? Like citrate. 

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There's no potassium in it, it's just Magnesium Taurate, mag and taurine basically which is why I tried.

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I find they have no rhyme or reason to them. I can get a ton every day for weeks on end and then none but a few here and there for other weeks. They just come and go as they please. I try to keep up with my daily magnesium and electrolyte drinks as I need them for my pots. I don’t feel like I’ll ever be pvc free but am learning to live with them. I have no other choice but to really! 

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@MissMermaid you mention the anxiety you experience when you have pvc’s. I have hyperadrenergic pots and pvc’s and anxiety in my case are both a result of excessive adrenaline output and happen at the same time. In some people pvc’s cause anxiety and in others anxiety causes pvc’s, it is hard to pinpoint what causes what. But they do go hand in hand. For me medications and providing a lot of rest periods have been very helpful. 

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@Pistol yes, anxiety and pvcs seem to go hand in hand for many many people. Sometimes they are a source of anxiety for me, others not so much. Depends on my current mental state. I think lately I’ve been a bit more stressed and unhappy due to never feeling good physically anymore. Feel like I’ve been in a flare up for six months. I’m sure I’m not the only one who’s chronic illness effects them mentally as well. 

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@MissMermaid no, you are definitely not the only one. I used to take seizures when my BP went up too high and faint when it went too low, so I was very anxious about my symptoms all of the time. I suffered first from anxiety related to my illness/symptoms and then from depression. With time, proper medication to keep my HR and BP in check and becoming disabled ( which allowed me to adjust my daily routine to the needs of my body ) I have found balance. But this can - in some of us - be achieved without becoming disabled. But IMO it does require proper medical treatment - and that can take years of trial and error. A experienced autonomic specialist seems an absolute necessity to me, I was not able to find proper treatment before seeing a specialist. 

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@Pistol I know what you mean. Anxiety and depression is the worst. I too get anxious about my symptoms. About fainting and being dizzy in public. Fainting at work is always a source of anxiety and embarrassment. And over thinking things. I know I don’t look sick so I don’t give myself a break in fear of just looking lazy. I don’t have a specialist. I do have a cardiologist but we do not get a long. I could request another I suppose but don’t want to be labeled a difficult patient. I think I need to be more proactive with my health. I will look into my options. Thank you for sharing, I definitely appreciate it 

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@MissMermaid - yes, you absolutely need to be the one in charge. I fired 5 cardiologists before finding the right one and I have a wonderful PCP and my autonomic specialist, who I have to travel out of state to see. this team of physicians works together for me and always communicate with each other about any changes. But when I first became sick neither I nor my PCP knew anything about dysautonomia and I did a lot of research about my symptoms before requesting a referral to the specialist. I was able to be diagnosed in less than 2 years because of being proactive and not being intimidated by ignorant or uninformed doctors. Our list of physicians may guide you to a doctor experienced in dysautonomia that you could see, hopefully not too far away. Not every state has a physician specialized in POTS, so you may have to travel. PM me if you need help! 

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16 hours ago, MissMermaid said:

I could request another I suppose but don’t want to be labeled a difficult patient.

I agree with @Pistol when it comes to finding a doctor that will work WITH you and TOGETHER with any other physicians that may be in the picture. I also fired 3 cardiologists during my journey - one of whom told me straight to my face that I was “making this up to seek attention”. 

You’re not being a difficult patient. Trust me. Your health is very important and worth fighting for!! Keep at it and best wishes!!

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