I was due to have a left sided ablation for afib tachycardia on 29th September, but in the last month I kept going lightheaded snd faint. Last Saturday week I did collapse so had to call an ambulance
The long and short of it was my heart rate was far too low (38) so it was decided to put in a pacemaker. Thoughts were might not need an ablation later but perhaps might be necessary once heart had recovered from the PM op
It was done 3 days ago under sedation although that just relaxed snd I was fully aware. No problems didn’t feel a thing snd felt good all the rest of the day. They kept me on all my pills snd upped the bisoprolol
Now though I feel dreadful. I have pains in my left arm mainly through the night, ache in my chest snd back snd so sore and uncomfortable Plus the palpitations and feeling rough have come back
I know it’s early days, but did anyone else feel grim after have had a pacemaker. I wish I had hung on just to have the ablation
The hospital said the pacemaker is to stop the heart from going too low, and regulate heart beat but wouldn’t stop it going too high , whereas the ablation would help the high heart rate I understand all of that but didn’t think I would feel so ill and uncomfortable now
So sorry this is very long post
Please all those PMs out there would you let me have your opinions and experiences
Thsnkyou…….Pst
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Tapanac
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Yes I was on 1.25 low dose bisoprolol, 50 x twice a day flecainide, apixaban, 75mgs levythyroxine, Co-amilofruse water tablet
I was gone on all these especially I thought the flecainide a miracle, until all the low heart rate worsened. It had got lower since my ablation for flutter on 2018 but not as low as pre PM
I wonder why they didn't consider reducing, or omitting either the bisoprolol or flecainide first - before fitting a pacemaker. I thought Flecainide was a wonder drug, until I was taken off of it and then had so much more energy.
Yes they took me off both of those and it worked as heart rate went up on its own, but then they had a meeting and decided on the pacemaker first snd the ablation later. I went along with them thinking they knew best. I’m now beginning to think they were wrong snd should have stopped the pills, did the ablation snd then hopefully need no more pills which wouldn’t make the heart rate plummet. I did say that to the other EP but their reasoning was do both ends of the spectrum
It's so hard these days to decide what to do when we have medical problems, so I understand. Hopefully up ahead you'll look back and think how much better you feel with your pacemaker.
If you get worried about how you're feeling dial the 111 number, they will hopefully get you into a unit that runs alongside A&E. I was sent there once and recently they gave me an appointment for A&E. So many A&E departments now have side ones with lots of doctors, but you have to do the 111 NHS no. to get there. Don't hesitate if you are feeling dreadful, hopefully they may send an ambulance to pick you up. Don't feel guilty about that, our hearts are very important and they know that. You may have an infection that needs attention ASAP.
I know I’m not a doctor but I think it’s recurring tachycardia afib, but I must admit I didn’t think of 111. I’ll give it a little while longer for any of the secretaries to reply to my voicemail messages as only 3 days since the op and I guess my poor old heart has been traumatised.
Thank you Jean I’ll let you know what’s happens. It was just a shock having all these thumps and bumps and tachycardia back again after so long. Wish now I had stuck to saying I wanted the ablation, no pills so no low heart rate, then no pacemaker
I was just saying to my hubby this is the first time since I had the ablation in 2018 I’ve had the thumping and bumping as if the bed or settee is moving and not just me. I know I still have the atrial fibrillation and tachycardia, but not this
I did manage to finally get through to the cardiac unit who passed me on to the pacing clinic but they were in a meeting and the chap said he would get a doctor to phone me back. Nothing. Never mind maybe tomorrow although it’s Saturday.
Not since I’ve been home Bob, but I was only discharged on Wednesday. I just feel rubbish snd now the old palpitations have started (afib I guess) which were under control pre PM. Also feel there is a lump in my chest and diaphragm and weak. It’s 9.48 snd I’m actually still in bed which is definitely not me!!
I had really bad pain for a couple of weeks and the bruising was off the scale !
Did you have an X-ray after the op to check wires were in the right position ? I had one before I was sent home then another the next day plus a settings check.
Your settings may need tweaking so if you feel something isn’t right call the pacing technicians and they can do a check if they feel it’s necessary.
Yes they did the X-ray about two hours after the pacemaker. I expect discomfort and some pain, snd realise hearts must be a bit traumatised after this, but I didn’t expect all the tachycardia, thumps snd bumps back again especially as I’m still on upped bisoprolol and also the flecainide which have been keeping me on the straight snd narrow since 2018 until I kept passing out lightheaded in the last couple of months with low heart rate
I tried phoning the consultants secretaries as impossible to speak immediately to either of them, but both numbers went into answerphone. One saying she only worked on Tuesday and Thursday and the other she was out of the office until after the bank holiday (whoo bank holiday was end august!!!). Tried another couple of numbers including the cardiology ward but nurses didn’t know. Then tried pacing clinic and they said they only dealt with the pacemakers and suggested I go to A&E if I was very worried. In this heat I don’t think I could face that.
I’ll hang on I think unless I have to resort to going up there. I don’t want to put my hubby under too much stress either as he has not long been out of hospital with a pacemaker himself plus he has mild dementia and hasn't coped too well with me being away. Our family live on Kent and Essex although bless them they have done their very best
did you have the pace snd ablate st the same time hylda2. They told me I had to have the pacemaker first then when that healed (about 6 months) they would do the left sided ablation. did you see my replies to Jeannie
I did try the pacing clinic after trying to get through to the consultants secretaries but all they said was they just deal with the pacemakers and if I was very worried to go to A&E but don’t think I could face that at the moment.
I had a pacemaker fitted in June and was pretty tender and uncomfortable and sometimes sore but is does get better day by day. It’s still pretty tender some days. I also have days when I am very tired but even those are getting less. Stick with it, as it does improve. I had a pacemaker fitted for TachyBrady syndrome. Medication was making my heart rate go to low l, often in the 30s. The consultant told me there was nothing else they could do for me, only fit a pacemaker which I readily agreed to. I was back in A&E just three weeks after being discharged from hospital with AF and lightheadedness, but since that episode I have now been OK.
That sounds very familiar. My tablets for tachycardia and afib made the heart rate too low so I was lightheaded and fainting I was all for stopping the pills which they did for three weeks snd heart rate went up to normal. Then they were going to do a left sided ablation to stop the tachy and help the afib but at the last minute put in a pacemaker. I went along with it as didn’t know any better snd now although I appreciate the soreness snd everything, I’m back on the pills snd worse irregular tachycardia and thumps snd bumps like clowns doing acrobats so it seems I’ll have to have the ablation after all I also especially during the night keep getting quite bad ache and pain in my left arm I did once or twice have ache in my central chest through to my back but that hasn't happened so much
Thank you for replying snd I hope you stay well now
Yes, pacemaker seems to be setting down now and does seem to be keeping HR to about 60 although sometimes it still dips down or goes up but dies gradually appear to be settling. But it’s like everything else in life you have one thing done and find another. Hospital that did the pacemaker did and Echo which showed up that I also have an ascending aortic aneurysm. Never mind, and I’m glad I know as it will now be monitored.
My brother in law had an aneurysm for about 30 years. Nothing was done about it snd he was fine, but as you say they are at least keeping an eye on you
I had a Pacemaker fitted 8 years ago for the same reason as you however this happened after the ablation. The ablation was deemed a success however I kept having 'whiteouts', heat coming up from my feet throughout my body and then everything went white, same as a blackout apparently. Heart rate dropped low and cardiologist was concerned that I was pass out hence the Pacemaker. After insertion I felt very sore and edgy, it took a couple of weeks to get used to it, I had hoped after ablation I would come off drugs immediately, that was not the case and after the Pacemaker was fitted my drugs were changed to Bisoporal and the other, Disopyramide, I had been on several years and had to stay on it so not drug free at all. I have had 8 good years with no A/F until I took a fall last year and broke my hip, I battled on for a year only then to discover I was in perm, A/F and heart failure, heart now back in sinus and drugs increased to maintain it so still taking drugs and the Pacemaker helps stopping H/R going too low. If you are still feeling unwell go back to your cardio and find out why, maybe the pacing needs attention or the balance of drugs not quite right, there is always a reason so ask the questions until they get it right. Good luck and keep your chin up x
Thank you very much for your reply. It sounds like you’ve had a rough time with your hip as well.
I have phoned all round and finally got through to cardiology who passed me on to the paving clinic but they were all in a meeting and would phone me back. I’ve heard nothing so far….
They said they had set my pacemaker to 60 which apparently is the norm, but we have a BO and pulse machine snd it is always 70 so I did wonder if that was too high as my poor old heart has been struggling at 38-42 ish for ages
then don't give up, ring again to get it tested, and until you have the answers you want, may need to get back to your Cardiologist. Waiting to get seen is awful, I am referred to a Vascular Specialist due to the condition now of my legs (all since the fall) and have been told 40- 48 weeks, which simply is not good enough, so next week I shall be contacting them again!
hi, I’m on my second pacemaker now, it’s a little treasure. They always need to check the settings once you’ve had it in for a short while as everyone’s bodies are different with different problems.
I think you need to get the PM department to have you back in for a computer check and adjust your rates.
Feeling rubbish is not something that you will suffer once they’ve got you properly tuned.
Insist they see you a.s.a.p. In the meantime don’t panic,? It’s all a new experience for your body and you which needs time.
Thank you. I’ve just replied to opal that I managed “eventually” to get hold of someone in cardiology who put me through to pacing clinic but all in a meeting and was told they would phone me back
A year ago I was having dizzy spells & fainted. They decided after a week of monitoring in hospital to take me off Flecainide & sotolol & put in a pacemaker. This was purely to stop my heart rate from dropping too low & preventing dizzy spells etc. They then put me on 5mg bisoprolol & since then I’ve been fine-fingers crossed! I was told the pacemaker wouldn’t stop the AF which it hasn’t but As it’s persistent now I can cope with it. Do hope they sort it out soon for you. If you feel really poorly I would ring111. It seems you get much quicker attention if you go to A & E via 111. It took about 2 - 3 weeks for everything to feel better after my pacemaker.
Thank you I suppose 4 days is a bit soon but it’s the shaking thumps snd bumps which I used to get years ago before my ablation which have returned and I don’t like
Also I thought after the pacemaker I would be able to reduce my pills not increase them
After my AFIB journey I look at a PM as both a diagnostic tool and pulse management device.With the telemetry technology in the modern PM you can be assured your EP clinic has real time understanding of your heart status.
I had some minor discomfort and strange sensations after getting mine in place. Three years on the only issue I have is to take my telemetry monitor with me when I travel. If the monitor does not handshake after three days the EP clinic calls and checks.
Thank you. I do have one of these biometric monitors beside my bed and the cardio doctor before she passed me on to the pacing unit said when I got through to them they could look on the computer to see what’s happening. The only problem they haven’t come back to me
Thank you
My best friend is my pacemaker…and apart from no.2 trying to escape through my skin I’ve not had an issue with it.
On some occasions I’ve rung the pacemaker clinic and they’ve been able to tell me if what I’ve been feeling is AF or ectopics and they’ve even had me come in for an adjustment the same day on one occasion…
Well I’ve been trying to contact them since yesterday afternoon but just keeps ringing then cutting off
I’m glad you feel good
Had a pacemaker fitted over 2 years ago and they increased my bisoprolol to 5mg a day from 2.5 and I am still on it, had my 3rd Ablation and now waiting for #4. Pain goes away after a few days. My understanding is that my pacemaker is now set to run at 60 and set to cut in when my heart goes over 150. The pacemaker then starts trying to bring it down to 70, that is a battle. Unfortunately we are in the hands of doctors and we can only assume that they know what is best for us.
Oh I was told that my pacemaker would control my heart rate from going below 60 but could not do anything with high fast rate tachycardia hence keeping on bisoprolol and flecainide
Is your pacemaker a single lead or does it have two leads, I assume it does not have 3. Mine is a two lead version and this helps when I get a fast rate. It was set to 170bpm but at the last check-up it was moved down to 150. So when my rate goes above 150 the pacemaker kicks in and it try's to bring it down to 70.
Hope you are feeling better and the pain has gone.
Thank you Jock. I have a 2 lead, but I was told the PM was only to stop heart rate going below 60 and that it wouldn’t do anything for high heart rate (tachycardia). Hence why I’m still on loads of pills which was disappointing in itself as was told originally I would come off a lot of them!
I wish I hadn’t had the pacemaker now as the pills ( unlike now) before kept the tachycardia st bay but were the reason for the low heart rate. They stopped the pills for 2-3 weeks snd heart rate went up to 65-70 but they still said to do PM. It’s been all a bit confusing as well as painful and heart gone back to how how it was before my ablation in 2019
I would ask the team that are looking after you to talk you through everything that both leads perform. I have a yearly check-up with the Arrhythmia nurse and she walks me through the information recorded on the pacemaker ie how much use, battery life remaining and a few other things. Every 6 months I connect up using a modem and the equipment given to me extracts the data and stores it so the medical teams can look at it.
Presumably you have the transmitter by your bed, it monitors you overnight and sends data thru from during the day, any problems and they will ring you from cardiology!
Yes I do have the monitor snd when I phoned cardio doctor yesterday she said call pacing unit and they will look on the computer to see what’s going on. I did phone them. Everyone was in a meeting yesterday afternoon and person who answered phone said he would get someone to call back. Nothing so far
Your welcome, hope it settles down! All this waiting is horrible, I’ve been waiting months for an ablation and with all the strikes, goodness knows when it will happen!
That's the theory.I think this is nothing to do with improved patient care ( the monitor) and more to do with closing F2F clinics.
Yes, they phone you if it's an arranged upload (Virtual Device Clinic), but other than that, the phone remains silent.
I'm having PM problem for the last 9 months bit do they call you? Of course not.
If it wasn't for the GP intervening and escalating things, I'd still be waiting.
If you've got an older PM without Bluetooth built in, it can't communicate unless the separate device reader unit sits over your device and you have to do it. It's not automatic.
If you have a good team, they might tell you how it all works. If not, it comes through the post and you get on as best you can.
I'm on number two monitor as the first one failed.
I hope the monitor does better at detecting PM battery end of life. The first PM failed on depleted battery meaning an A&E visit instead of the planned replacement.
I have AFib, aflutter, complete heart block, then a CA in December when they gave me the pacemaker, so far so good, but I’m waiting for AV ablation, so I will be totally reliant on the pacemaker! Bit scary but I’m told it’s a very safe option!
I found that the hospital staff really underplay how awful you feel after having this procedure done. I felt awful for weeks afterwards - I had an ICD inserted with pacing leads after a Sudden Cardiac Arrest on holiday so I was very glad for the peace of mind but yes I felt like I has severe blow to the chest for weeks afterwards, it took ages to get used to the extra weight in my chest not to mention at the age 43, (now 44) feeling a bit self conscious about the bulge in my chest (I actually love it now - the scar and the bulge are my war wounds).
It does take time and for me personally, having pacing leads and the internal defibrillator puts my mind at ease. I had ablation number 4 in Feb of this year so still facing issues but I like having my little friend there.
Thank you beebee I know there are people worse off, but it doesn’t help when the doctors don’t respond. We all just want to feel better don’t we snd have the energy and stamina as before
Teasing out the PM conversation being an Electrical Engineer I am such an advocate.The more are utilised the more the technology can evolve. Every muscle action requires an electrical signal of some sort. Understanding what these mean is a function of processing power and speed and the power to make it happen safely and long term.
Without wishing to sound Orwellian their diagnostic power will improve at the rate other military technology is and with the aid of Artificial intelligence they will have a capability into the future we can only imagine now.
The problem is the technicians might know more about you than you might want.
I do some micro controller coding as well as being in complete heart block and a PM user.Better algorithms should come with evolving processors and an ability to adapt to changing personal conditions.
I'm getting a lot of trouble with ectopics (PVCs) which seem to mess up the PM timing leading to reduced PM activity.
It doesn't maintain the minimum rate by a long way.
It shouldn't be beyond the designer's wit to tell the difference between a "proper" signal and an imposter.
As far as data goes, as long as the PM doesn't start dipping into the phone wallet, I'm not fussed about the rest.
The above link gives a particular industry view of some of the future technologies.
With the bandwidth available on the new 5G network so much more can be processed outside the body.
Wow the hackers will have a field day!!
21/2 years post a successful PVI because my PM is a diagnostic tool I no longer need an annual EP check up. If I get any issues these will be identified and diagnostic intervention will happen.
my husband has a 3 lead pm which goes to both left and right and a defib
I have been given a 2 lead just in disappointingly right side, as I have heard on here that some have their PMs to go not too low but also not too high which would haven been good for me as it looks like I will have to have an ablation in left side for afib and tachycardia
Pain and discomfort are not common but it doesn't mean it can't happen.
If it persists, get it checked in case you have an infection.
What exactly do you mean by "rough" and "palpitations"?
Your PM should have a minimum rate set, usually 60-BPM, maybe 70. This will be shown on your PM card as something like IPG rate 60.
Check your own pulse wherever you can find it, wrist for example.
Invest in a good BP monitor that records and detects arrhythmias. Omron are good and reliable. Mine is Omron MIT-10.
PMs are not foolproof and can only do so much.
They should maintain the minimum rate, but if you have other underlying complications like ectopic beats (PACs or PVCs), the PM will struggle to keep up and you can get what feels like your old symptoms happening all over again.
This is what I'm experiencing after nearly two decades of trouble-free PM use.
Rough as I’m not feeling well. I say palpitations for arrythmia and tachycardia as friends and family don’t really appreciate what that is.
I do have a BP monitor which does pulse as well, but although I’m told my heart rate was set at 60 the pulse always says 70.
My chest feels as if it’s had a big attack of tachycardia snd I did wonder if as my heart had got used to beating at 38-43 for so long if 70 is upsetting it
Hope you get some results from your messaging but 111 is always a good start if no other replies. Don't be afraid to call anyone out if you need to or think your complaint is not worth it. It may not be really but you are and it is important to sort things out and keep your mind at rest to help you heal.
hi, I had a PM fitted in Dec 21 cos of low HR after recovering from open heart op. After 2wks developed horrible tachycardia that really knocked me out about twice a day felt like fainting, being sick and losing control of my bowels. Anyway consultant said it was PM induced Tachy. My PM was not set properly and had to be adjusted, Didn't stop Tachy so needed another ablation in March 22 to fix. Call hospital and ask for PM to be checked, my local hospital will always see me re PM within couple of days as I suppose it is serious.
I had to make a choice.Heart having pauses.almost fainted after a COVID booster..In the end had a pacemaker it in.Sort of recall heart seemed to beat faster.felt it but after a month or two felt normal so give it time.I also may end up with ablation ..think pacemaker given me a little more energy.
I'm watching this thread with interest. I'm 49 yrs old but had permanent A Fib for approx 11 years. After multiple tests and checking some symptoms were not Epilepsy related, I was put on Bisoprolol 10mg, Digoxin 125mcg and Rivaroxaban 20mg daily, just over a year ago. My heart rate is still of concern though, lowest it can drop to is 41, highest 150 when doing minimal activity. I avoid heavy activity as not confident the rate control measures are working as expected. I totally expect a pacemaker to be considered as a next step as I get older.
Glad you're getting help/advice from others here. 👍🏼
Yes thank you snd I hope you get answers. 10mgs bisoprolol is high dose which would made your heart rate low, but of course they’re trying to control the high rate. I can understand the pacemaker as that controls the rate not going below a certain rate snd an ablation hopefully would control the high rate. A lot of people on here have had a pace and ablate
Yes, they've put me on 10-mg Bisoprolol which doesn't seem to make sense when the PM is now pulsing well below it's minimum set rate. I get below 40-BPM paced with a minimum set to 70.
I get 100 ectopics an hour which mess up the PM.
The high dose of BS is an attempt to swamp out the ectopics.
I never used to go below the minimum and this is a new complication with falls and blackouts.
My husband had loads of ectopics and the pm third lead caused spasms in his diaphragm. They set his pm to 80 to try and stop the ectopics but he didn’t feel good on that so they tweaked to 70 and lowered his bisoprolol to 2.5. He is fine now
Just to sort me now
It seems as if they really do need to lower your bisoprolol as that is presumably what is lowering your heart rate. Or the lead not working properly allowing the rate to drop below the set rate of 60
All the best as obviously you don’t want the blackouts snd damage yourself
Hi, I had my pacemaker inserted in June this year. I then had to wait 6 weeks before I had an AV node Ablation. During that 6 weeks I experienced a lot of discomfort, so I contacted the Heart Centre as suggested on the discharge instructions leaflet. I was checked over had an X-ray, everything was normal thank goodness.
Once I’d had the AV node Ablation on 2nd August, everything magically fell into place. Last week I went back for a pacemaker tweak that lowered my heart rate to 60bpm …. I now have my life back after 5 years of suffering and feel great!
I would definitely contact your Heart Centre to check you out for reassurance. Good luck and I hope you soon feel much better.
I ended up with an infection at the insertion site. Was on two different sets of antibiotics before the pain and the infection subsided. It took over a month. Good luck!
For the latter part of today I just feel poorly my chest is tight and breathless snd the upper part (heart) feels bruised. I did think i would go to A&E but the thought of Saturday might busy snd heat I couldn’t do it
I'm so sorry that you are having a hard time adjusting to your Pacemaker, also, still having pain after three days, especially at night? I had my Pacemaker installed two weeks ago, after having very low Bradycardia (32 bpm) and started to have AF, sometimes it lasted a day or two... I felt very poorly, at times, I thought that I was on death's door... but since my Pacemaker, I have a new lease on LIFE, feel like NEW, much more energy, no dizziness, fainting spells, and plain feeling horrible. The first two days after the installation, a bit of discomfort on the site of the incision with very little bruising.
I do wear a "brace" only at night, while I sleep, to keep me from extending my left arm over my head, and during the day, I have just to remind myself not to do that. Will need to limit my arm movement for four weeks, while I heal, but other than that, I feel like a "New woman" I am 70 years young. Tapanac, hag in there, it will get better!, SOON
Thank you micorazon for your encouragement, but I do still feel so grim and it’s 5 days now
I have aches in my left arm, my chest feels heavy and uncomfortable even towards my stomach and the wound area is still very sore and the whole thing heavy and quite often feel queasy
I wish I hadn’t had the pacemaker and just carried on leaving off the pills which were keeping the tachycardia at bay and were the culprits for the low heart rate and just had the ablation, but I thought the consultant knew best. My heart does have other issues which I guess don’t help
I might have to resort to going to A&E today if I still feel bad
I’m so glad you are feeling great snd long May it last
I know a number of people who have has PMs fitted including my very elderly aunt. None have experienced your discomfort for so long.
I think you should get this checked to put your mind at rest. You shouldn't be regretting having the PM.
PMs are not a cheap option and your consultant should be well experienced in deciding that it's best for you. A&E might help, but your PM team are the ones to contact.
If you haven't already, ask them the straight question, "why did you think a PM was the best option for me?"
Some are good at explaining things, some are not. I even had the reply once of "you wouldn't understand it". At least give me the opportunity.
I'm sure things will settle down and you might be one of the unlucky ones where it takes longer. Definitely don't suffer in silence and doubt.
Take heart you will find the benefit of P&A when you have the ablation. This is what I felt last year when I had both with a six week interval between the two. I had a very rough pacemaker insertion and felt pain and palpitations after but once I'd had the ablation I've never felt AF again. It took about 4 months to completely recover from the two procedures and my body to adjust to them but I am so glad I took the plunge. No more heavy drugs just anticoagulant and blood pressure tablets. 🤩
Oh brilliant I’m so pleased for you. Hopefully this will be me in time. I want to get off the drugs, but more I want to not feel so weak, tired, hurting in my arm, chest snd back.
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