[Richard]

Hello all,

My names Richard and I live in the UK. It's currently 2:07am and I'm having one of my frequent "can't get to sleep nights" due to PVC's. Which having looked around the site I know many of you are familiar with.

I have like all of you had the gamut of tests and yes often more than once or twice or three times *coughs*, *shuffles feet* *mumbles ...okay maybe 8 or 9 times*

I have been 'dealing' with PVC's for 9 years and I am still here. I seem to be the only one that is amazed at that fact my Dr's/Cardiologist are all totally unimpressed.

I noticed a couple of recent posts from new PVC'ers and totally sympathise with you and understand that feeling of doom and the absolute certainty that your going to drop dead at any moment ! You won't but being new you will have the usual I have to something wrong with me, they missed something thoughts we have all been through that. You may go to sleep and awake in utter amazement that your still alive ! well the good news is that will be a regular thing, because like the Dr's and the cardiologists have told you it's a benign condition.

When you first get these PVC's/PAC's and you get the benign label its so hard to accept because of the physical feeling of the heart, from making you jump to your stomach 'lurching', electrical shocks, feeling winded or jabbed in the stomach to fluttering and even a little breathless.

There are so many little manifestations and sensations that PVC's trigger it really does mess around with your mental well being.

As time passes things may get easier for some for others it can be as frustrating and as nerve racking as the first day you experiened them.

What I'm trying to impart in a very clumsy way is that the real harm is done by the stress, panic and anxiety that is induced by PVC's/PAC's! My very first few months in my first year were spent constantly rushing to hospital the remainder of that year was spent stopping myself from rushing back to the hospital.

To those that are new and think their behaviour is somehow pathetic ... it most definately is not on the contrary it's a very normal human and most of all understandable response.

Here are my stats for the newly diagnosed (and old timers alike) I'd like you to keep in mind that am still here Good days 2-3 PVC's/PAC's every minute of every hour of every day. A more normal day 5-7 PVC's/PAC's every minute of every hour of every day. The scary days every 3rd or 4th beat (very rarely have every 2nd beat for some reason) sometimes for what seems like days on end. They wax and wane but I can say I do have them almost constantly. The last time I got a reprieve from them was when they suddenly disappeared in the summer of 2006 only to reappear in the run up to Xmas of that year.

It doesn't matter wether you have 2 a day or double the amount above what matters is that you believe what you are told and that you have faith in your Dr's Cardiologists and other fellow sufferers that have 'dealt' with these things for a number of years, they are NOT going to be the end of you.

I hope this hasn't come across as self righteous or sanctimonious and has in some way helped you to understand the real enemy with benign arryhthmia is in the fear and anxiety which grips us all from time to time, myself (most definately) included.

Wishing you all a skip free day/week/month/year

All the best Richard.

P.S. I have a friend that has suffered with these things for almost 34 years now. He started when he was in his late 20's. Puts my 9 years well and truly in the shade !

[jkfrench]

Hey Richard,
Great post. Thanks for offering the reassurance that we all need to survive these things. You are so right in regards to trusting your doctor. Why is that so hard for us. I'm sure most of us have had 2nd if not 3rd opinions. We get the same answer..benign..they will not kill you...they will eventually subside....from more than one doctor and we still can't believe them. For me, the PVC's are so strong that I feel every single one. THAT is why it is so hard to believe the doctor. And not being able to ignore them just increases the anxiety that continues to fuel them. What doesn't make sense to a lot of people is the correlation between anxiety and pcv's. Simply because 50% of the time we start to feel them, we are relaxing (or at least think we are). It is a vicious cycle and having people like you that take the time to share your story truly helps, so thank you. I hope to see you back again.
Jodie

[jsuter69]

I'm working on my 3rd cardiologist! My problem is that whenever I wear the stupid monitor...I do record but not all my beats feel the same...and it seems like the scarier longer erratic beats and pausing are never caught on tape! So therefore my docs all seems to have the same answer..."YOU'RE FINE, YOU'RE MY HEALTHIEST PATIENT"....
This is why I have a hard time believing anything they say...because my worst rhythms seem to not get recorded! So if they don't see them, how can they tell me what I'm having?? It's hard to trust....
Julie

[Richard]

Hi,

Well I'm back again , thanks for the responses and I hope it did help a little.

On the subject of monitors I think everyone that has had PVC's/PAC's etc has had that lingering thought ... what if the monitor doesn't record the one's I'm really scared by ? what if they don't happen ... after all if they don't see it they can't diagnose it ?

Truth is a holter or a loop recorder provide an awful lot of information. Every point along the ECG line provide's information from strength, origin and also a tiny bit of information about how healthy the muscle of the heart is amongst other gems of information.

Dangerous arrhythmia's have many clues especially the ones that are caused by heart disease and congenital conditions. (Its isn't ALWAYS necessary for you to have the arrhythmia whilst having the recorder on; tell tale signs may already be present on the ECG this is worth bearing in mind ... although capturing the arrhythmia that worries you is absolute peace of mind) Accessory pathways and mitrochondrio/foci that conduct abnormally are easily picked up via ECG this wasn't always the case in the 80's through to the early 90's as the sensitivity and accompanying software wasn't as accurate as it is nowadays. Even back then misdiagnosis of an arrhythmia was a very rare event. Fast forward to today if you search and look at the devices provided by manufactures such as Philips, GEC and other well known medical appliance producers the machines are guaranteed to pick up all electrical activity not some not 99.9% all as in an 'absolute' sense.


It's always going to be a worry and a cause of stress and anxiety and I am as sure as I can be that all of us present on this board has felt the relief of wearing a monitor and the thoughts of ah caught one uhm no hang on that wasn't one of the dangerous ones was it .... or was it ? Hmmmm another few days on the monitor. I can convince myself that I never experienced or caught one of the ones that scare me and as soon as the monitor goes back in I start the thought process of well that won't have done any good I never had a bad one that I caught ... all the days I wore the monitor were good. In the 9 years I have had these things the multiple monitors (and there have been many and I mean MANY !!) I have never managed to capture that scary beat. My friend who has had them for 34 years is exactly the same never caught the scary one. Here's the kicker though it maybe a day or two after and you get the one yep the real scary one and 'boom' panic city here we come !


Why do we never capture them ? My thoughts on this are that each and every skip, jump, thump, flutter, zap, winder, stomach twister, anal clenching, sphincter shrivelling beat is unique and always feels different ... sure they are the same as in the sense that all trees are the same (but different) all leaves are the same (but different) all snowflakes are the same (but different) okay okay I got carried away there but I hope you know what I mean


I totally understand the sensation of feeling every beat and trying to compare one sensation with another but to be honest in moments of lucidity and calm I see how futile it is to do this ... but I still do after all this time.


I have lived the deathwatch of the night with myself and the doomwatch of the day and lived to tell the tale ... but have I truly lived.


The above is a grim sentence but holds a lot of truth especially when you are first diagnosed with these beasts!


Don't be disheartened if you never think you capture that arrhythmia that scares you. Easier said than done but with holter's, loop recorders, possibly stress tests echo and possibly even nuclear testing we will in almost all likelihood still not be satisfied that we have caught that which plagues us.


It is highly ... no ... not highly nope nope not even extremely unlikely it is .... as near as certain what you are experiencing is benign.


If I am being honest when these things come thick and fast for me that still isn't a good enough guarantee for me


The bottom line is that people that do not undergo this testing are far more likely to keel over than you !


Okay I have ranted enough and at the end of this am not totally sure I have reassured you any !?! You are (because you have/are being tested) in safer hands than most people on the planet sure doesn't feel like it(I know) It's the people that don't feel these oddly enough that are at far greater risk (This I have been told numerous times from ward nurses, GP's and Specialists). I've been in an observation ward next to a guy totally oblivious to ANY sensation but kept passing out during the day turns out he had had a silent MI and was experiencing torsade du point. I saw him get wheeled in to the observation ward hooked up to the ECG ... the nurse called for a Dr immediately and the guy was whisked off to the cardiac unit there and then. The nurse and the Dr where like “why the @!@*£; didn't you call and ambulance !” rather than the total indifference that we usually get ... which is ah PVC's go home and oooh lots of PVC's ... go home or even ahhh yep PVC's every third beat ... would you like to go home now ? Your fine. (It's usually at this point or has been in the past that I want to scream at them 'you can't send me home I'm about to die !!!' ... but am still here)




At some point we have to accept what we are being told, some of us deal with it and others don't I bounce back between the two for varying lengths and various frequency.


All I can do is wish you a skip free day/week/month/year and as ever ...


All the best




Richard.

[Neil]

Richard, great post outlining some valid points that I know most of us here will echo . I'm 35 and struggled with ectopics now for 5 years or so (a fellow UK man by the way, and to add to that this is the best site I have found and has helped reasure me) . My Grandfather suffered ectopic beats for 40 to 50 years living to the ripe old age of 94 and sadly passing away due to complications following a fall and broken hip . His heart was strong to the end which should go someway to give us some faith . However in the cold light of day when the beats are at there worst nothing seems to win the mental battle that we all face . At times like that I find that chatting to other like suffers on this site helps remove the burden and possitivly reinforce the BEGNIN message.
Neil

[dld]

Great posts guys. Reading what you wrote about the monitor Richard is exactly what I felt. It is amazing that we all go through the exact same feelings. That's why this site is so great. We've all been there and we can all understand. When the bad days come back (as they always do) it is very reassuring to know there is someone else who understands.

[homemaker]

Richard..Great Post! I am currently on a 30 day loop event monitor and I am having similar thoughts...wondering if the monitor will pick up what they need to know...I find myself wishing and hoping for my heart to freak out or do something weird...Good to know the others have felt the same!