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Arrhythmia Alliance
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Ectopics

Hi everyone!

I’m a 26 year old female and for the last three years of my life, I have been suffering with palpitations. I’ve seen countless cardiologists, have done stress tests, EKG’s, Holter monitors, blood tests, and everything comes back fine. However, what I call “the skipped beats” which is medically extra beats, extrasystole, have seem to be a bit more progressive. When I started getting palpitations three years ago it was very rare, where I would have a few bad days and they would disappear for months, but now, it’s perssitent, almost everyday or second day. I rarely get a whole day of peace and well being. Most doctors I’ve seen say they are a nuisance and uncomfortable, but non life threatening. A recent cardiologist I’ve seen has diagnosed it a POTS (Postural Orthostatic Tachycardia Syndrome), I’m just waiting on the final tilt test to 100% confirm this. Personally, I keep feeling the doctors are missing something and that one day, my heart will just stop. I’m scared most days and cry A LOT. I have a 14 month old son, and because of these palpitations it’s hibdering me from having energy. All I want to do is lay in bed or cry. I push myself to do things, like exercise, eat healthy, but even after I exercise I get hit with the palpitations. I feel I can’t enjoy life. I already have an anxiety disorder so having these are not helping my situation. I’m so scared and sometimes I get so upset I contemplate suicide. I’ve never felt so miserable in my life. This isn’t me. These have ruined me, mentally and emotionally. I’m so tired of doctors saying they’re ok, when they don’t have to feel these everyday. I can’t even hold down a job because of this. I’ve even lost jobs because of it. Sorry for the long post, I just needed to talk to people who may give hood advice or have the same struggles.

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You may want to post this on the Atrial Fibrillation Association forum on HealthUnlocked. Many members there have experience of these issues.

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Thank you, wasn’t sure I was posted it to the wrong section.

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Hi,

Sorry to hear you've been dealing with this! I know from experience that it is miserable! And also, very difficult for doctors to help with even when they do believe you. POTS is generally a consistent 20-30bpm rise when you are upright. If this is not what is happening, it is likely not POTS. Are you having lots of extra beats or a high heart rate or both? There are other things that cause each of these. None of which are dangerous just super annoying and miserable. Have they done a Holter monitor? And have they tried any medication?

I went through a 2 year period with mystery tachycardia/palpitations myself so I might be able to help but I need to know a little more.

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Yes, I have had all of this done. They keep telling me it’s ectopic beats, just a nuisance and non life threatening. However, they are taking over my life :( I was on beta blockers, but stopped when I became pregnant. I can’t rake them now because my blood pressure gets a bit low, and it worsens my asthma.

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It IS a nuisance and absolutely miserable. Perhaps they can try some other medications that don’t interfere with you asthma or BP as much. It may be a matter of trying several different things. Have they mentioned ablation? Are they interspersed PACs and PVCs or runs of SVT?

My problem was atrial tachycardia which the dr diagnosed as inappropriate sinus tachycardia as it was the closest thing he could find to the problem. Similar to pots but not upright posture dependent. Most people with IST have a rate averaging over 90 all day with exhaustion, palps, etc but not me. Mine turns on and off all day long for any sympathetic stimulation (exercise, eating, laughing, nervousness, bending over, etc). Practically everything and I could feel every thump, super annoying. Plus about once or twice a week it would get stuck over 120 for a few hours. Exercise especially caused this.

We tried everything, beta blockers, calcium channel blockers and ivibradine, as well as zero exercise for 4 months. Nothing worked completely. I was slated to have a very low success rate ablation and possible pacemaker and as a last ditch effort I tried (without asking dr) a very low dose beta blocker he had given me 2 years ago. I broke in half to 12.5 mg and took morning and midday. And low and behold, it works! The higher dose was too much for my BP. This is just enough to hold off most of the palps. I feel 1000% better so I really hope it continues to work (it’s been 3 mos).

I tell you all this in case any of this rings a bell and perhaps could help you. Keep pushing until you feel better but also keep living your life in the interim. Everyone is correct that the palps can’t hurt you or your heart but ones that are constant can hurt your mental state. I didn’t even want to have emotions anymore because my heart rate leaping and having a chance of sticking at 130+ drove me nuts. I totally know how you feel. This is just 1 hurdle though and you’ll eventually find a solution that works for you. Best of luck and keep us posted!

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Omg wow! What you just explained sounds so much like myself... I have seen numerous cardiologists, but have never had this diagnosis brought to life. Is IST hard to diagnose? I’ve asked for ablation but they are not willing to do it. They tell me it can pose risks as well since my heart is structurally normal. I’ve had one doctor tell me it could possibly be SVT, but they need to catch it in that moment. About 10 times in my life I’ve had extreme episodes where I’m sitting, working or even in a restaurant where my heart does almost like a flip flop, skips then starts pounding so hard, reaching almost 180 BPM. It only lasts about 30sec to a min and by the time an ambulance gets there it’s gone and dismissed as an anxiety attack. I’m finding it hard to get a proper diagnoses from doctors, it’s three years of running back and forth from doctor to doctor.

Did you have the ablation? Or you just stuck with the heart meds?

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Nope, no ablation as it’s not in a good spot, too close to the sinus node itself. If they ablate they could take out part of my sinus node and then I’d need a pacemaker. But, they were willing to try as nothing was working. Luckily meds are still working so ablation is on pause (hopefully forever).

Get a handheld Kardia device and you can capture your own ecgs when you have a spell. About $100 and an app on your phone. Mine kept showing sinus tachycardia which is why they figured out I had IST and yes it’s fairly rare. I also may have Sinus node reentrant tachycardia which is the rarest of the SVTs. I went to the ER twice with a hr that kept ping ponging up to 140s and back down to 80s none stop for about 8 hours. Drs had no clue but now we think it’s IST that’s sympathetically reactive, mixed with SNRT that will occasionally get my heart stuck in a revolving loop. I’m weird, haha!

Going to meet my new electrophysiologist in a few weeks after my first one couldn’t help any further as I needed a more specialized specialist. Luckily I’ll be able to just tell him I’m good for now.

If you turn out to have IST, ask about ivibradine (spelling?). It doesn’t effect blood pressure or asthma but does drop heart rate. I didn’t particularly love it but it does help many with IST.

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Ok!! Thank you for the very helpful tips. Even if this isn’t what I have, it’s worth looking into. My heart rate at rest is usually 65-80 though, doesn’t usually hit 100 at rest. When I stand, it tends to increase fast. But, who knows 🤷🏻‍♀️ I’m just so annoyed with it all.

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Your welcome! I hope you get to the bottom of it!

And, there’s 2 types of IST. Most internet articles only discuss the most common with always high heart rate except while sleeping. Mine is not like that. I also have low resting rates throughout day 50s/60s which is why high doses of beta blockers were rough. Made me sooo tired and hr/BP too low.

And everyone’s hr shoots up when they stand, then drops. The hallmark of pots is that it stays high all the time when in upright posture.

I luckily had some of these episodes laying flat so that’s why the dr never tested me for pots. Just be aware that you can get a positive tilt table and still not have pots (lots of false positives).

When are you being tested or seeing cardiologist next? And make sure your seeing electrophysiologist not cardiologist, if you already aren’t 😉

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I’m waiting for my referral still! It’s a cardiologist who specializes in POTS. I haven’t even seen an electrophysiologist unfortunately. My doctor doesn’t feel it’s necessary to see one because I have good results on my tests from the cardiologist. I would love to see one though just because they specialize in the electrical part, not just the cosmetics. I think I want to push for this.

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Sounds like you’re in good hands with a cardiologist that specializes in POTS because at least they’ll be thinking outside the box, but I think pushing for an electrophysiologist is not a bad idea either. Maybe if they don’t see POTS they’ll refer you to an EP. I know it takes forever to see anybody which is why I always figured it was a good thing I wasn’t dying, haha! General cardiologists and GPs are definitely not who you want to see if you have weird issues! Give us an update when you get in and seen 👍

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Hello Cassandra,

Like your GP or your consultant, I understand how you feel, and I can tell you that what they are telling you is correct, that while ectopics are very annoying and very scary, they are entirely harmless – but unlike them, however, I am telling you this from my own personal experience with ectopics - for over fifty years. I’ve had them so bad that they’ve woken me at night, thumping away in my chest. Night after night. And I remember very well what was probably the perfect time for an echo cardiogram I had – prefect because I was in the throes an unrelenting barrage of ectopics. The quiet amusement of the senior nurse carrying out the test was very, very reassuring – it really was. From all the signals she was receiving, my problem was not one to worry about. And of course, as you imply, your nervous disposition will not help. I’ve been there too. I have been very much like you in that. But really, when you think about it, the most easy-going and confident of people would quickly find their nerves on a knife-edge were they to undergo a few days of thumping ectopic heartbeats in their chest. Well, try to think about what I’ve been saying here – my ectopics are not something I worry about now. Don’t misunderstand me, I still don’t like them, but they’ve ceased to worry me. They come and they go. Sometimes I think I’m over them, because I haven’t been aware of them for weeks on end – maybe months –but then, bang, and they’re back again. And sometimes they linger around for very long periods, nonstop. If I’m in a conversation and they start, I say to myself, oh well, here we go again. That’s how it is now. Please try to be reassured with what I’m saying. You are obviously an intelligent young woman, so go out and enjoy your youth, and your baby, because you are capable of very much. Just don’t let this nuisance win the day. Don’t. One day you’ll reach my age and say to yourself, “I was worried over something not worth the worrying about”. Yeah, me too.

With all good wishes,

pnokio

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Hi

They are horrible and I get uptight when I have long episodes of them !! Ask your GP for some Betablockers they help a lot when your struggling on bad days I have found them very good and hardly get them anymore ( keep a diary of what you

Eat & drink each day soo you can look at triggers mine are alcohol & no big meals

At any time never eaten so many bananas

And boiled eggs in my life

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How long did it take for your beta blockers to work? I’ve been on them a week and can’t say they’ve done anything for my ectopics

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The day I started , what dose are you taking ?

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1.25mg but my blood pressure and resting heart rate are low so don’t think I can go up on it

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I have a similar problem and had a battery of tests like you. The doctor said I don’t have anything but my heart is racing and I experience tightness in my chest difficulty breathing. Anyway, he puts me on bisoprolol for that. But I have yet to see a positive result. I suspect maybe it is Atrial Fibrillation. I hope your condition will be better soon. Please just take deep breaths as often as we can

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Have you tried taking a magnesium supplement? I have recently started taking magnesium taurate and my palpitations have all but dissapeared. May be worth looking into?

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I did buy magnesium before, but apparently it can make them worse depending on the amount you take or the different types, such as magnesium citrate. I feel very cautious and nervous to try these all the time.

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Hi Cassandra I have suffered this condition for 47 years, even before current medical knowledge knew what Ventricular Ectopic Beats were. They have ruined my life but I am still alive and still hoping for a solution. I am hoping to find a solution in England as I never found a solution in Australia. Stay in touch at cliffo@iinet.net.au and I will let you know if I have any success. Regards Cliff

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