missing a beat

[Eddie64]

how serious is your heart keep missing beats, mines been doing it now for 4 days solid .ha and 2 stents fitted 3 years ago, also keep getting pain in left arm and fingers tingling in left hand .Sounds serious right yet my cardiologist keeps cancelling my appointments,my next one is the 10 th of june if they don’t cancel again.i also have an ilr fitted with as picked up 23 tachy with 4 symptoms,sinus tachy with max rate 160 bpm and 4 symptoms show sinus rhythm with frequent SVEsthis was back in February and march this year,after having the ilr fitted it was never explained to me clearly how to use it correctly.hence been pressing the button wrong for almost 8 months ,until finally explained to how to use it ,so every time up until February ,having all these symptoms was never picked up ,so god knows what’s been missed.Further forward to present day ,as I said early the missing beats are now a curing 24 hours a day now ,so I’ve been pressing my button regularly for the past few days.My ilr team who ever they are , rang me yesterday to tell me to stop pressing my button so many times,or I will run the battery out ,then told me they are picking up missed beats quite alot and to leave it to them and that’s as far as I’ve gotten.I have no idea how serious this is , but it seems as tho I’ve been left on my own to deal with it

[cotonh]

We only have experience of a pacemaker with a monitor. Do you have a monitor or an app on your phone sending data to the technicians at the cardiology department with an ilr? If yes, then I think they will be looking at the recent recordings and adjusting the ilr from their end. You do not need to go and see them for this to happen which can make it feel that you are on your own when they are actually on the case. I guess if I was you I try ringing this afternoon to see if an adjustment has been made because of the longer weekend with the Bank Holiday.

[Eddie64 in reply to cotonh]

Thank you for your reply but an ilr isn’t like a pacemaker it can’t be ajusted it just reads the electrical side of your heart,I’ve just been to see them at the hospital and they basically told me to make another appointment with my doctor .I give up

[cotonh in reply to Eddie64]

Thanks for replying as my post was irrelevant. Sorry to hear the hospital were not able to help you today and that you have been sent back to the GP.

[Eddie64 in reply to cotonh]

Thank you for trying I appreciate any kind of response

[Zed1063]

Good morning, Thats horrible! I have missing beats since my HA and stents fitted and get tingling and other sensations and pain nad have been to A&E several times. After all the test told nothing to worry about and tbh the more I worry the worst they get!

They are really scarry and make me feel sick but mentally they batter me!

I think it is terrible the way they keep cancelling your appointment but I can't even get an appointment up here, they don't let you see a cardiologist or GP in fact!

Wish you all the best

[Eddie64 in reply to Zed1063]

It’s very comforting to know I’m not alone ,I personally think it’s disgusting the way heart attack patients are tret after the ha , they drag their eels for to long before actually getting something done ,I think my hospital as only got the one cardiologist lol ,I have more chance of speaking to king Charlie than my cardiologist.Where are you from if you don’t mind me asking

[Zed1063]

Hi

I am in Colchester Essex, You? When I had my HA I came home and waited fro a 'check up appointment' which never came - I then phoned up cardiology and asked an they told me no your fine all fixed! never had an appointment!

Trying to get an appointment is awful up here, no GP appointments either but they are rubbish as well, you want answers and never get them!

[Bruce67 in reply to Zed1063]

Sorry not trying to hijack the post. I am also in Colchester and the left hand doesn't know what the right hand is doing locally as far as patient healthcare goes! Thankfully a few individuals are brilliant, sadly they are not at the top end of things, but grass roots so not always privvy to or allowed to share info that would be in best interests of a patient 🤐

[Eddie64 in reply to Bruce67]

Thanks for the reply I totally agree

[Zed1063 in reply to Bruce67]

Hi

May I ask when you had your heart issues? was it recently? I was in Basildon which were brilliant for my HA but then once released I am supposed to see someone in CGH - nope still not to date! I don't think cardiologists exist in Colchester hospital!

[Eddie64 in reply to Zed1063]

Hi zed , I had my ha 3 years ago and 2 stents,I’ve just had my cardiologist appointment today,they are looking at maybe a pacemaker,and also booking me in for an angiogram in a years time, lol I could be dead by then

[Zed1063 in reply to Eddie64]

Did they say all was good today? Hopefully that is the case. They don't hurry! I think it is worse when it is the unknown and I don't think they realise how nervous these things make us

[Eddie64 in reply to Zed1063]

Apart from the pacemaker and angiogram they said everything ok , but it certainly doesn’t feel that way

[World1inmotion]

You could try ringing the BHF helpline for advice from the very helpful cardiac nurses

[Eddie64 in reply to World1inmotion]

I’m going to wait till I’ve had my appointment s then take it from there I think but thank you

[Zed1063]

I think the care in Colchester for cardiology is terrible there is no support out there. I tried TWICE to go to the rehab gym and that was as bad, walked around the gym for an hour on different equipment! no education, no support, no discussion about feelings, and then my mum had a stroke so could not go for two weeks and with everything going on with mum I forgot to phone them! so they threw me off the course now I can't go to the gym!

I would love to go to a meet up group locally for heart patients!

[Eddie64 in reply to Zed1063]

I know exactly how you feel

[Choccie55]

Generally ectopics are benign but considering you have other issues it would put your mind at rest to be reviewed. Perhaps ring the BHF Cardiac Nurse helpline for advice? I’ve had them for 20 years and have always been told they are nothing to worry about but they are disconcerting to experience. Keep well hydrated and rested and stress to a minimum.

[Eddie64 in reply to Choccie55]

Just a quicky ,when you’re having them do you sometimes get pains in your chest or sometimes dizziness and thank you for your reply

[Choccie55 in reply to Eddie64]

Hi Eddie64, I don’t get any pain but I am prone to dizzy spells generally. I have supra ventricular tachycardia which can be triggered by ectopic beats.