PVCs/pacs ruining my life..what do I do? - British Heart Fou...

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PVCs/pacs ruining my life..what do I do?

Sarahlou23xx
Sarahlou23xx

They started in 2012 and I’m now 32.

They go through bad spells ..I’ve bern fine,a few a day here and there for months,then Thursday night as soon as I walked /moved around they were every few beats.

I’m ok if I’m lying down or sitting down but a few mins after walking around they start every couple of beats..thuds and stoping and jolting.

Then I sit down and within 10 mins they go.

I went to A&e today and they did ecg (they didn’t happen as I was lying down) my heart rate was high at 121 bpm (I was terrified)

Bloods were fine and they sent me away with nothing ..no explanation or nothing.

They’ve said go to my doctor and see a outpatient cardiologist.

I’ve had a Holter before and a echo and it showed PVCs /pacs and my heart was normal...they said they didn’t know what caused them probably stress.

I can’t carry on like this.

Does anyone know what’s causing them when I move around /stand up/walk?

I can’t cope

20 Replies
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Hello Sarahlou,

It breaks my heart to hear of your illness at so young an age. It's horrible for you.

I know nothing about PVCs/PACs except what I have just read on Wikipedia but I have spent years trying to get help from cardiologists who have not been helpful. Wikipedia talks about drug treatment or ablation and I would think that your first aim should be to try drugs (Wikipedia says beta-blockers or certain calcium channel blockers).

I am afraid that you must go back to your GP to ask for another cardiology appointment to point out that it is exertion, not stress, that s causing the problem and that your life is being ruined. Make sure that somebody goes with you to act as your advocate: it is much easier for somebody else to argue foyer you.

What you frankly need is a better cardiologist, and it might be worth studying the profiles of those in your area to look for somebody with the right expertise.

PS: There is more info here: medicinenet.com/premature_v...

Do you ever have any other symptoms e.g. pain?

No never pain ,just sometimes tight feeling around back.

They’ve been fine for months,the odd few a day but they are literally now every 5 seconds then randomly I lie down and they go away

Hi Sarahlou,

I really do understand how you feel, I have had the same problems since 2015 and never really got any answers ended up having to go private. I was eventually tried on a wide range of different beta blockers but didn’t tolerate them as they dropped my blood pressure too low. I was then un-medicated for a year but things deteriorated health wise for me and now I’m on Verapramil which is an anti arrhythmia.

I strongly advise you to be strong as this is your health and life, go back to your GP and explain how this is affecting you physically and mentally and you want to be referred to another cardiologist.

Stand your ground, cry if you have to! Don’t be fobbed off!!

I wish you luck and keep us updated

Thankyou Kirsty.

I’m now scared to go anywhere,incase something bad happens.

I have the same thing and feel the same way. I have multiple and hour for over 3 months strait I’m miserable this happened to me and I’m afraid to go anywhere.

Nothing any worse than the pvc’s/pad’s are going to happen, so don’t be frightened to go out. You need to go to the doctors though and a cardiologist will need to do tests to see if your heart is healthy which I’m sure it is.

You need to explained this to your doctor that it’s affecting all aspects of your life.

I agree with Kirsty's comments. I asked about chest pain because the association with exertion made me wonder if the underlying cause is ischemia, and the tightness you describe makes me even more suspicious that you may be suffering from ischemia. I will write again this evening.

I’ve had anxiety disorder for years now but it’s mostly under control..although every day I worry about everything.

I’ve had a stressful few weeks,maybe that’s made them worse.

Would you start beta blockers?

Hi Sarahlou,

I have had similar problems since 2015 and I do sympathise with you. It took about two and a half years and every cardiology test until I was eventually diagnosed with dilated cardiomyopathy. I have been pretty stable for the last 6 months, I take a beta blocker called Carvedilol and an ACE inhibitor and a diuretic. Generally ectopics are usually totally harmless, everybody gets them from time to time. But if they are so frequent you do need to get checked out. Cutting out caffeine helped me a lot, and dealing with your anxiety can also help. You can get stuck in the ectopics/anxiety/ more ectopics loop and it just goes on and on. There are some brilliant videos on You Tube by Dr Sanjeev Gupta from York Cardiology. He has done a whole series of videos on various heart problems, and he explains ectopics very well. There’s a website and Facebook page as well. But you must get checked out properly, at least with a 24 hour ECG tape so they can see what is going on. Good luck x

P.S Here’s a link to one of those videos, really helpful youtu.be/-7rDc5f8muk

It’s Dr Sanjay Gupta , spelt it wrong before!

eciftcioglu
eciftcioglu in reply to SaraEM

How did it took 2.5 years for you to get diagnosed. Dilated cardiomopathy can easily be diagnosed with a simple echo. Can you explain further please ? I am always scared that doctors miss something about my heart.Was this the case for you?

Does anyone know why they stop once I sit down?

When I’m moving or standing they begin?

Not every time but I walked to town today and every few seconds pvc..got home sat down and within a minute they all stopped.

These etopics. Can be very annoying please read my story I wrote this morning I have had them 39 years but nothing like now always put mine down to work I am in a very stressful job but nope came back with no cause try to relax more stop focusing on them easy said hit to do the same they can be a nightmare but I beilive beta blockers do help just I can’t take high doses because I have astmer

Hello Sarah,

I don’t know if you are on this site still but I have exactly as you are describing. Mine are fine when sitting or lying down but after about 5 minutes up they start in. I have no pain but the PVCs/PACs give me a feeling a fear each time they beat off. Trying to work through them is not fun. I’ve been referred to cardiology so we’ll see what happens. I can go for days or months with nothing then all of a sudden they come on. I’ve seen cardiology before and have gone through all the tests. Nothing to worry about they tell me. But like you they are now impacting my daily life. Problem is too is by the time I get a holter they have not been bad and when I lay down I do t register too many either. I try not to worry but it’s my heart so it’s hard not to. I’m believe in Christ so I pray and study a lot and I find that helps me get through the days. You are not alone.

mike9912
mike9912 in reply to Kristy75

How did you make out kristy with the cardiologist

A little late to the party, but I've been dealing with PVC's for almost 10 years. They would come and go, with "episodes" lasting days to weeks. My current episode has been going on for 2 months and is the worst ever. I did a 3-day holter that showed the PVC's but no indication of serious arrhythmia. My ectopic beats do not follow any pattern. My echo was also normal. Did full range of blood tests, all normal. I saw an electrophysiologist who said they appear to be originating from one area of the ventricles. Said that 90-95% of the time, the PVC's are benign. Wants to do a cardiac PET scan to rule out heart inflammation and a cardiac MRI to rule out tissue damage. Then the plan is to do an ablation.

I can not determine specific triggers, but would generally be worse when hungry, after eating, and when lying down. During the past few days, its flipped. They are diminished when sitting/lying and fire up when I stand up or walk. I had an episode today while walking to my car where I had many PVC's in a row. Like for 20-30 seconds. Scared me to death as that has never happened before. I sat down in the car and they slowed down to every couple beats, then back to their "normal" amount. I don't know why they are suddenly worse when my heart rate goes up. Called the specialist's office and am waiting for a call back. Even with all my normal test results, it's still scary when you don't know what's causing them, and can't predict or stop them. I hope we all have answers and solutions soon.

Logon
Logon in reply to Ohmygodbeckay

Wow that's exactly what is going on with me, I am really desperate now, would love to hear from you if you managed to sort them out somehow.

Ohmygodbeckay
Ohmygodbeckay in reply to Logon

My EP determined that my PVCs are benign as there were no indications of underlying pathology. I decided to get an ablation solely for "quality of life" reasons. Unfortunately when I went in for the procedure, the PVCs weren't firing frequently enough for him to locate the source and ablate it. So I still have the PVCs and they are still erratic in nature, but knowing they are not harmful for me has helped me to live with them.

Try not to worry about your missed beats/extra beats whilst being a real worry to you, most people have them apparently. I have 5-6 a minute and have done for the past 6 months.

Was referred to a cardiologist and had various tests which confirmed 7687 supra Ventricular ectopics over the 24hourvperiod. Prescribed a beta blocker to calm my heart rate. Hasn't stopped my ectopics, but my heart rate has now calmed enough to be bearable. Speak to your GP and get referred to a cardiologist. Nothing to be afraid about, there can be a long wait before your seen dependant on hospital. Write down your symptoms. Remember it is your health, you are in charge of it, the medical profession are there for you. Good luck, and go and get some answers.

Hello Sarah,

How did you end up making out? I know it was 2 years ago but how are you now? Mine ended up going away for several months but here we are again with some pretty miserable episodes.

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