MissMermaid Posted October 5, 2019 Report Posted October 5, 2019 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 Quote
Alex D. Posted October 5, 2019 Report Posted October 5, 2019 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 Quote
MissMermaid Posted October 5, 2019 Author Report Posted October 5, 2019 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 😊 Quote
Scout Posted October 5, 2019 Report Posted October 5, 2019 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. Quote
Pistol Posted October 5, 2019 Report Posted October 5, 2019 @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. Quote
MissMermaid Posted October 5, 2019 Author Report Posted October 5, 2019 Ectopic beats are awful and would not wish them on anyone but it’s always nice to feel like you aren’t alone Quote
bombsh3ll Posted October 5, 2019 Report Posted October 5, 2019 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 Quote
MissMermaid Posted October 5, 2019 Author Report Posted October 5, 2019 @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 😊 Quote
Sushi Posted October 5, 2019 Report Posted October 5, 2019 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. Quote
MissMermaid Posted October 6, 2019 Author Report Posted October 6, 2019 @Sushi thank you so much for your reply. Will definitely look into this. Coconut water added to my diet would be a simple change so I might get onto that! 😊 Quote
bombsh3ll Posted October 6, 2019 Report Posted October 6, 2019 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 Quote
DizzyPopcorn Posted October 6, 2019 Report Posted October 6, 2019 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. Quote
MissMermaid Posted October 8, 2019 Author Report Posted October 8, 2019 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! Quote
MissMermaid Posted October 9, 2019 Author Report Posted October 9, 2019 @FileTrekker I’m sorry for your constant ectopics. They are annoying and hard to live with. Mine have been a lot more active than usual the last few days and I hate the anxiety they bring. Quote
Pistol Posted October 9, 2019 Report Posted October 9, 2019 @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. Quote
MissMermaid Posted October 9, 2019 Author Report Posted October 9, 2019 @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. Quote
Pistol Posted October 10, 2019 Report Posted October 10, 2019 @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. Quote
MissMermaid Posted October 10, 2019 Author Report Posted October 10, 2019 @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 Quote
Pistol Posted October 10, 2019 Report Posted October 10, 2019 @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! Quote
jklass44 Posted October 10, 2019 Report Posted October 10, 2019 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!! Quote
MissMermaid Posted October 11, 2019 Author Report Posted October 11, 2019 @jklass44 thank you so much for your support and encouragement. I will be seeking a new cardiologist! I have to advocate for my own health because no one else is going to do it for me. Quote
MMarianne Posted April 17, 2021 Report Posted April 17, 2021 New to this forum. So stressed, anxious, and depressed about POTS! I've also started to have some crazy fluctuations in blood pressure. It feels like this current flare is never going to end. Trying low dosage of propranolol for the up-and-down BP. It helps but makes the pressure too low at times. Are beta blockers helping others long-term or just "as needed?" Like others have mentioned, the cardiologist told me the irregular heartbeats were benign. I've been diagnosed and treated at a Dysautonomia clinic and soon will have a follow-up appointment there. Going to ask them for a referral to a cardiologist who will be better versed in this field and (hopefully) help me manage my life. Quote
Pistol Posted April 17, 2021 Report Posted April 17, 2021 Hello @MMarianne - welcome to this forum! I am sorry you are having such a hard time. Yes, I have fluctuations in BP, and I am on a beta blocker. Unfortunately not all beta blockers are equal, and we often need to try a few before we find the right one. I tried Metoprolol, Propanolol and Bystolic - all of them were either ineffective or dropped my HR too low at times. What helps me a lot is Carvelidol - it has both beta and alpha blocking properties. 7 hours ago, MMarianne said: Are beta blockers helping others long-term or just "as needed?" I used to take more BB when my HR and BP were up and less when they dropped - but this only caused more chaos. My autonomic specialist explained to me that fluctuating too much with our meds will often make the "disorder" part of POTS worse - we are thriving to find balance, so changing our meds does not really help with that. In my experience if you have to keep changing the dosage obviously the med is not helping, since if it was helping you would not have these ups and downs. I have found that for most of us there is no ONE med that is the quick fix - it takes a finetuned mix of meds, lifestyle adjustments ( rest and exercise to our tolerance, salt and fluid loading, compression hose ) and the acceptance that there will be flares that we will have to adjust to. Most docs and patients think that treating the HR is what will fix our symptoms too. But this is not true: the HR is only ONE symptom, and treating it solely does not fix the other symptoms, such as lightheadedness, fatigue, exercise intolerance etc. For many patients it takes other meds, not only cardiac meds - for example SSRI/SNRI's are very effective for all types of POTS in most cases. This brings me to this: 7 hours ago, MMarianne said: I've been diagnosed and treated at a Dysautonomia clinic and soon will have a follow-up appointment there. Going to ask them for a referral to a cardiologist who will be better versed in this field and (hopefully) help me manage my life. Most cardiologists will only treat the cardiac symptoms of POTS, since that is their field of expertise. However - POTS is a syndrome that does not have only cardiac symptoms but is rather a mix of cardiac, neurologic and endocrine symptoms. Therefore you are in better hands with a dysautonomia clinic that treats ALL of the symptoms. I am not sure how long you have been diagnosed with POTS but I assume you have not yet been properly adjusted with meds. For most of us it is a predictably long and frustrating process ( for us as well as for our docs ) to find the right treatment. Keep a log of your symptoms and Vital signs, take your meds a prescribed ( for now ) and take this to your Follow up appointment. It is important for the doc to see how you respond - and this cannot be established if you keep changing your meds. Wishing you all the best - hang in there!!!! Quote
POTSie78 Posted April 28, 2021 Report Posted April 28, 2021 I have PAC, PVCS, SA AND ST along with mild mitral valve regurgitation and thickening of my heart muscle and one carotid (no plaque). I have had syncope, pre-syncope, sleep syncope and numerous GI issues for 40+ years. I now have an inplanted loop recorder. I was born with spina bifida and was finally diagnosed with dysautonomia last year and this year I was diagnosed with POTS. Hopefully now that my symptoms have a name I can get some relief. Quote
Ashc Posted April 29, 2021 Report Posted April 29, 2021 20 hours ago, POTSie78 said: I have PAC, PVCS, SA AND ST along with mild mitral valve regurgitation and thickening of my heart muscle and one carotid (no plaque). I have had syncope, pre-syncope, sleep syncope and numerous GI issues for 40+ years. I now have an inplanted loop recorder. I was born with spina bifida and was finally diagnosed with dysautonomia last year and this year I was diagnosed with POTS. Hopefully now that my symptoms have a name I can get some relief. You're one strong and brave soul. Bless you. Quote
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