Lots and lots of PACs

[mummyofspot]

Hello 👋

Wonder if anyone can offer any advice?

For a few years I've been experiencing ectopic beats (been told they are PACs). I get them on a daily basis and they have been attributed to hormones. I'm perimenopausal. I'm on Propranolol for them (and anxiety).

Last June (2023) I experienced a week where I had really frequent ectopics (every 4th or 5th beat), I was checked out and had lots of tests, ECG, Echo, Monitor & stress MRI. Was told no problem at all with heart and it's a structurally normal and healthy heart (and typically my ectopics were very few whilst wearing the monitor).

Anyway fast forward to now, Since Monday I've been having many PAC/PVCs every 4th or 5th heart beat. It stays in this rhythm for most of the day (but seems to subside at bedtime). I've got an apple watch so have been using the ECG function so I know how often they are coming (I can feel them too and there's a sensation at the base of my throat and they make me cough). My blood oxygen is good at 99%.

I've booked an appointment with my cardiologist but not until 27th Feb. I am due to go away tomorrow to visit family for half term and I'm really freaking out that I'm going to be in this horrible state for a week.

Is this dangerous? I don't know whether to go to A & E before I go, but last year when I went with the same problem (before I saw the cardiologist) they told me nothing was wrong (even though they could see them on the ECG). I don't know what is causing this. My hormones or something else (this only started during perimenopause). I also have a hiatus hernia.

Not to be dramatic but I'm worried that my heart will give out in front of my kids.

Any advice would be gratefully received.

Thank you so much.

[Jalia]

I can only give you my experience....I've had weeks/ months with almost continual PVC s in the past ( per my Kardiamobile). I'm convinced that these are stress related. We are continually told that these are harmless. I also have a hiatus hernia which I rather suspect has helped to instigate an AF episode on more than one occasion . It could of course just be coincidence but worth considering if this may be a factor with your continual run of PVCs etc.

[loghousegal in reply to Jalia]

My Kardiamobile also tells me I have PVC and PVEctopics. They feel like Afib to me. I also have a large hiatal hernia. I've told the cardiologist and my EP and they don't see to care. about the hernia and dismiss the ectopics. It is interesting that we all have them with the hiatal hernia.

[Jalia in reply to loghousegal]

I agree, they don't seem particularly interested! I've had AF start after lying on my (preferred) left side , felt strong pulsating in the hernia and then flipped into AF which unfortunately is normally persistent.

[maurice2]

They've had a good look and your heart seems to me healthy. So best to try and ignore the ectopics. I get a load several times a day but I get on with things and keep busy. A mile or two of fast walking is good, gets your heart going and you don't notice any ectopics. Remember, it's very rare in someone with a structurally good heart for it to stop working, hearts are incredibly robust organs.

[Jonp]

Hi, hope you are coping.I am not a doctor but have done research into this.

I have pvcs, sometimes days of every 4th beat with every 3rd (trigeminy) and every 2nd (bigeminy) occasionally. I also get the tickle in throat and cough occasionally. I think this is vagus nerve.

I believe that mine are triggered by pressure on the heart or vagus nerve from wind in oesophagus, stomach or bowels (I have a redundant bowel - a lot of it, in loops). This is Roemheld Syndrome. See Sanjay Gupta on YouTube for info on RS.

Could your hiatus hernia put pressure on the heart or vagus nerve? They are close together.

If wind is also a problem from swallowed air, I have some layman's advice, let me know.

I also have EHS, Electrohypersensitivity, which I have proved though doctors deny it exists. I believe that this may make my heart "jumpy" but RS is the trigger.

Colonic Irrigation may have helped me with pvcs, check with your doctor first.

Hope this helps, definitely look at RS.

[Llcas]

Hi there, I can totally relate to your post. I get palpitations and flutters multiple times through the day but they tend to increase significantly when I’m due for a period. I’m 46 with teenagers and my hormones are all over the place. Aren’t we lucky! I’ve had all the tests and recently saw the electro cardiologist again who has prescribed flecanide to control the extra beats. He said it’s a pill in a pocket so I can just take it for the lead up to my cycle or when the palps ramp up. He also said he can only do an ablation if I’m confirmed to have AF as they can then know if exactly where on the upper chamber the misfiring is happening otherwise it’s almost impossible to be accurate. He’s top of his field so I’m taking his word for it!

Urghh, it really is such a frustrating condition and at times completely overwhelming as others can’t really understand how debilitating it can feel. It’s been 4 years since diagnosis for me and we have loads of different rhythm problems in our immediate and extended family so I’m pretty sure it’s genetic in my case. Anyway, I feel your pain. I now travel and do everything as like you structurally the heart looks fine. Try not to let it stop you from doing things. Hope you went on your trip. If you ever need to chat, happy to help.

Lou

[mummyofspot in reply to Llcas]

Hi. Thanks for your reply. I'm 48 and am pretty sure my ectopics are hormonal too. I'm on HRT but struggling to get the dose right.

Since posting I've seen the electro cardiologist and had ECG, echo and 7 day monitor. Luckily I was having loads of ectopics and they caught them on all of the tests. These have been confirmed as benign PVCs. My heart looks good with no damage. The cardiologist said they don't treat them unless impacting life (which they are). They are causing me so much anxiety that I am struggling to live life to the full. I have now been given Diltiazem a calcium channel blocker to 'try' if I want. I haven't had the courage to try it yet as I'm really scared of side effects. I've started to feel really unwell on the beta blockers (dizziness and fatigue) so I think I'm going to try to taper down.

How often do you find you need to take the flecanide? Does it eliminate them completely. Have you considered trying HRT to see if that helps? It hasn't been the miracle cure I was hoping!

I saw a top electrophysiologist in London and she also said that ablation isn't something they'd usually for ectopics unless the burden was really high. She also said that loads of women report that ectopics/palpitations are worse at ovulations, in luteal phase and when period is due.

I think the problem for me is the anxiety I feel in relation to them. My husband also has them but is able to ignore them and carry on and they go. I focus on them and make them worse. I have developed a debilitating cardiophobia which is very hard to overcome.

Anyway, thanks again for your reply. If you have any advice on how to impact your life I would be very grateful to hear.

Take care.

Jo xx

[Evaluna in reply to Llcas]

Hi Lou,I have just been reading your response from a couple of months ago. I wondered if you also get tachycardia as well as ectopics? The atrial tachycardia seems to make me feel worse than the ectopics if its frequent. It's often just short bursts for 10 or 20 seconds interspersed with the ectopics. Have you found flecanaide helpful?

Thanks

[MeganMN]

Wow, this was really great for me to read! I have had 20,000-30,000 ectopics a day for about a year and a half! I just had a successful ablation for the atrial tachycardia that also developed, but I almost cried when they said they couldn't get the ectopics. I am trying a bunch of supplements, but for me, the worst part is not sleeping. They are hard to bear during the day, but at night, I just woke up constantly with it as well. Since the ablation, I have slept finally, because I think that I was having the ectopics and the atrial tachycardia on top of it. I wish I had advice. I think it is really tough and the more it happens , the more aware we become OF it happening. I have met with a Naturopath, tried vagus nerve stimulation, and am trying a bunch of supplements. Even at my high burden, an ablation was not a sure bet. Hang in there. For me, a low dose Propranolol helped at night until it became really severe.

It impacted my life severely. I'm still waiting to see what will happen after the ablation. It was just two days ago. So far, the ectopics are still present, but much less, and I'm not getting nearly as many. It is really tough, though.