I've been offered a pacemaker after having very slow and high heartbeats and a recent holter confirmed heart pauses and PVCS borderline over 10% of daily 100.000 bpm.
I know lots of you have pacemakers
Can you give me advice on the pros and cons..
Thanks Janet
Good morning Janet.
Pros - HR doesn’t drop below 60 at night therefore not woken with Adrenaline rush followed by Tachycardia which triggers AF.
Confidence that my BP will remain steady so no more near syncope episodes.
Confidence that my heart is monitored 24/7 via app on my mobile phone so everything is picked up. My heart has improved significantly in the 4 years since implant.
Improved quality of life because of all of above.
Cons - once over the initial settling period of 6 weeks and you have adjusted to the implant the only one I can think of is not to cook over a Halogen Hob. That means my son has to cook for me when we stay - is that really a con?
There are risks of course and the major one would be risk of infection after the implant but that is a very small but not insignificant factor to consider but the EP talked me through it and what to expect, watch for and what they would do about it should I be unlucky enough to suffer infection.
The placement of the LV lead if you have a 3 lead PM is a bit more involved and sometimes they don’t attach well so a revision of the LV lead is required. That happened to me and I have to say that was a bit of a trauma but then that would apply to you? I wouldn’t imagine so.
The implant was certainly much less invasive and much quicker than ablation. In the hospital at 1pm, down into Cath Lab by 2pm and discharged by 8pm. All done under local anaesthesia and IV paracetamol so no drugs. I would imagine they would do light sedation if you needed it but it really is a very quick and straightforward procedure. My husband had one implanted 10 years ago and he stayed in overnight because he was last on the list and because of his age, they wanted to monitor him overnight but all went very well.
Dependant upon the exactly where the implant sits it can affect which bra - eg whilst scar was healing and for some time afterward I had avoid any bra with a metal adjuster/attachement thingy at the front because it sat exactly over the implant and irritated.
Need to visit Pacemaker Clinic once a year but they are usually prompt and efficient, it’s just the travel and the timing.
Hope that helps.
That was very reassuring it is a 2 lead pacemaker as far as I know and Hopefully it would help with both bradycardia and tachycardia and give me some normal breathing back
Is it noticeable under clothes ?
by chance i was having a halogen hob put in the kitchen but googled what affects a pacemaker and it was on the no list so perhaps I'll stick to an ordinary one.
I hope its not too uncomfortable fingers crossed
Mine is not at all noticeable under clothes but because I am rather bony around my collar bone (it sits just below) The profile is visible with a swimsuit.
It takes a while to get used to and it will be tender for the first few weeks but once everything heals and settles down it’s not something I even notice now.
Unlike Bantam - I had no bleeding or bruising but they cauterised as they went with a very fancy tool so I guess that could be why. I normally bruise easily and had whopper bruising after ablation but nothing after PM implant.
It's an induction hob you need to be wary of, not halogen, induction hobs use powerful copper coils that induce a current and heat the pan not the hob surface these cause strong magnetic fields when on, which can affect the pacemaker device. Halogen are fine as they are just big infra red lights and use radiated heat.
Thanks for that I had meant induction don't know what made me say halogen. I had read you have to be 24 inches from it so impossible to cook on such a hob I wonder if there's anything else I hadn't thought of
Janet
No problem Janet, easy to confuse, only reason I know is that I just installed an induction hob and was then told I might need a pacemaker, but not happened so far.
Are your PVC's symptomatic? 10% is a high burden, I get 1000's as well and feel every one, hate the darn things but seems my heart is in relatively good shape and its an electrical issue so no rush from the Hospital to alleviate them.
Yes I feel all the pvcs on a recent holter over 48 hours it showed out of 200.000 beats over 20.000 were pvcs too many and through out there were pauses 3.4 no wonder I don't have any energy my options are getting less but good luck to you as if your coping well why change anything
Thank you all for pointing this out! I am needing pm and was loving daughters induction stove....I was going to buy one for my kitchen remodel
I have had a 2 lead one for several years now and it is not noticeable even when wearing a low cut gown or top, I even had a haematoma after the insertion but once healed has not caused a problem. Only other thing I would add apart from the induction hob thing is not going through the airport scanners, I just carry and show my Pacemaker card at security and you get to bypass the ordinary scanners and either go through one of those booths with a revolving thingy inside or you get a pat down, important not to let them near you with the hand held scanner either as according to my Pacemaker clinic they can do more damage than the walk through screens.
Thanks Rosemary good tips I'm glad your doing so well
CREAMER. My third lead would not attach a couple of years ago but they have not tried again as 2 leads is giving me protection from low heart rate. I have LBBB. Any thoughts? Would 3rd lead be beneficial? I don't know what I might be missing!
I can’t answer that for you, something to ask your EP. What I do know is that the replacement procedure wasn’t pleasant. You might ask if there was a reason for them not reattempting but I do know it needs to be done as soon as possible after the procedure - mine was about 5 months after the original procedure and it was very difficult.
Biggest pro for me is the bradycardia is gone and the frequent pauses I used to get are rarely a problem, my rate is set to go no lower than 60bpm but I do still feel slight pauses occasionally, pacing tech says they aren’t showing when they download the data 🤷♀️I don’t have any cons.
The procedure can be a bit brutal and I had really awful bruising for weeks afterwards which was very painful but otherwise 2 years on and I’ve forgotten I even have it ! I don’t have a 24/7 monitoring gizmo so have to go to pacing clinic once a year which isn’t a huge deal for me.
My late husband also had a pm, he had total heart block so it saved his life at the time, he never had any problems with it.
That's good to hear as its my main problem bradycardia although i also have tachycardia as well but it would be nice to have more energy does the insertion stop you doing anything for a period of time
I also have tachy and sadly that isn’t fixed with my pm 🥴You have to be careful for at least 6 weeks after it’s put in, definitely no raising that arm above shoulder height as the wires are still bedding in.
I think it was a couple of weeks before I drove the car as the bruising was really painful but otherwise I carried on as usual, had to as my husband was in hospital.
Good luck I’m sure it will be worth it 😉
So for tachycardia do you still have to take meds to lower it if so what do you take?
The pacemaker may settle your heart but if Tachycardia continues at least you will have the option of taking meds without fear of HR going too low. Pacemaker won’t control high HR without AV node ablation. The 1st 6 weeks they may limit your HR - depends on the programming, so they may set it at 70 ish to allow you to walk but not go higher - it took a few weeks for mine to settle & find the ‘sweet’ spot so I was comfortable so they could reset my threshold at 60 ie - PM only takes over when HR drops below 60. Originally they set it at 75 but couldn’t tolerate that at rest so came down by multiples of 5 until it was comfortable at rest. Hope that helps.
I'm still in afib most of the time and have had 3 ablations all unsuccessful also recently had a stent for LAD do you think it's still worth a pacemaker ?
I can’t answer that - my own experience was after 2 ablations which lasted about 3 years, AF returned & I used to be in AF for about 70% of the time prior to PM implant, it reduced to 1% after a few months. Even with COVID it only went up to 5% of the time.
I gained a lot from PM implant and all I can say is what have you to lose by trying it? For sure it will stabilize your Brady/tachycardia & hopefully that will mean less AF.
Yes I take 1.25 of Bisoprolol and the pm stops my rate going to low which it was doing before.
I'm taking a combination of Metoprolol and Propafenone keep me out of AFIB and keep my AFIB at bay. So far it is working. I'm taking 1/3 of the Propafenone that is recommended and so far that's doing the job without making me tired and fatigued.
I hope you find a good solution for your HR. My Dr had suggested AV node ablation along with the pm, but that option scared me a lot. So I only have the pm and meds.
Jodie
How low was your heart rate before getting a pacemaker?
Low 50s, I have 2nd degree heart block so it was the pauses from that which was the main reason for the pm, I also have Afib and SVT and I chose a pm over ablation.
Hi Janet,
I got my pacemaker in may of 2021, and I have no issues. I have to transmit data every quarter, but I do that from home. I like because, with it, my dr has instant access to heart rythmn, etc. I have found out that my last data dump showed that I was only in AFIB less than 5% of the time and they were short episodes. My Dr was pleased but i do not know what is "allowed." Does anyone know that number? I'm sure it is not zero %.
The issue i had from procedure was an allergy to the tape and the scrub solution. It was awful. So i would mention that to my Dr especially if you tend to have any skin allergies. My chest was red and itchy from one side to the other, making it difficult to wear the bandage which is necessary during the healing process.
But as far as the pacemaker is concerned, no problems during or since the surgery.
Good luck to you.
Jodie in sc
Hello and good morning, I had two ablations which failed after a few days of NSR,I had a pacemaker fitted and the AV node disabled. This was last year and I feel so much better, no brainer for myself
Best of luck
Dave
Oh Dave I don't think I'd be happy to have the av node ablated your relying on a piece of machinery to not fail but glad it's working for you
That’s what scares many people and I also felt like that. Better if you don’t need AV . node ablation but after my experience with PM I would now be happy to go for it, if symptoms became intolerable again. They always leave some function so if PM failed, and they very, very rarely do, then you would have a very low HR but enough to keep you alive until you got emergency help.
Hello again, like your good self I was a little unsure so asked the question 'What happens if it breaks' the answer was 'they don't'. So i asked to humour me and answer if it did break. The answer 'you would have time to get to a hospital'.I knew quite a few people with pacemakers and AV node ablation so I asked them, plus on here too. One very good friend at the end of the conversation said it came down to trust. My EP in Bristol has been golden and I do trust her, so off I went.
I am not a lover of taking tablets, but some are unavoidable. I am now only on the blood thinner Apixaban.
I am so much better and it was the best thing I had done. It's your decision of course but ask yourself can you trust your advice, better to be off tablets for AF and have a controlled heart rate. Mine is set at 70 bottom and 120 top, it works for me
Sorry from Dave
I’m sorry I have no advice re pm but have found this thread interesting. May I ask please what is considered a low heart rate whilst asleep as mine drops every night at it’s lowest 43bpm to 47bpm. Thank you
HiI have rapid persistent AF but mine like yours goes to 48!
M y private specialist before trying the CCB mentioned a pace maker.
The CCB worked. CCB a.m 2.5 bisoprolol pm.
The a.m keeps heart beat to 93hbpm during the day and 48hbpm at nite.
All interesting as on Metoprolol couldnt control day which hbpm to 186.
On Bisoprolol 156.
Pauses during Metoprolol dose but none with the 2 latter.
Trial and resolution best.
cheri
Wow. I can’t cope with a high heart rate when in AF I find the pain so excruciating. Thank you for replying x
Cheri I have been on every rate control and rhythm drugs that have not helped metoprolol kept the heart rate really low but the other rate control diltiazam just doesn't stop the high rates over 119 even if I'm not doing anything I'm stuck without meds that will control both and having a stent fitted in May has complicated things it's now much more erratic
For me it's in the 40s at night but also in the daytime sometimes in the 30s then going over 110 sometimes 200 and drugs no longer control the beats if your on meds that your happy with and they control the rate in the daytime then you'll probably just be monitored till it changes
Thank you. Yes I’m on some meds and am ok the majority of time.
Hi Maglynne,
I have a low heart rate which before I had A-Fib could do down to 47 or 48 during the day and to 40 at night.
I am a keen DIYer so are quite active and my low heart rate didn’t cause me any problems and didn’t affect my Asthma.
I first experienced A-Fib at the beginning of December 21 and was put on 2.5mg of Bisoprolol. I had a cardioversion at the beginning of February which at the moment has proved successful but it’s early days.
My cardiologist then reduced my Bisoprolol to 1.25mg for 4 weeks and even at such a low dose it caused my heart rate to fall, after 2 weeks my heart rate during the day was down to 40 and at night was 37.
At this point I stopped taking the Bisoprolol as per my cardiologist’s advice and my resting heart rate is currently 48 day and 42 at its lowest at night.
I only mentioned the Bisoprolol to demonstrate that the heart can usually go well below the ‘normal’ resting rate of 60, and nowadays medic’s tend to regard 50 as the new ‘normal’.
I was interested in this post on pacemakers and in particular some of the replies which have been very informative as I want to talk to my cardiologist at my next review about my low heart rate and A-AFib which seem to go hand in hand.
The bottom line to this post is if your heart rate when you are asleep of 43 at worst doesn’t cause you any problems then I would not think you should be worried, however if it does worry you then please speak to your doctor.
Hope this post helps.
Thank you for the information. I’ve been taking diltiazem 200mg slow release following my 2nd bout of PAF at Christmas and yes my heart rate has dropped a little since taking them. I also take Edoxaban 60mg and perindopril for Hypertension. Very interesting what people have to say about PM but I think I’m far from needing one at the moment if at all.
No cons for me, all pros. I am able to “sit out”an AF attack without feeling as if I am going to faint. Used to end up in A&E but not been since pacemaker fitted. Nearly three years now.The pacemaker also records everything that your heart gets up to. This means it tracks any trends like AF burden and number of PVCs. This in turn can inform any changes required in the management of your condition.
Hope this helps.
HiAre you on Metoprolol?
On Metroprolol I had pauses. I hated it , not in control of my rapid persistent AF.
Specialist changed me to Bisoprolol no pauses. But still not in control.
Private Specialist interested in me and history.
Now on CCB Diltiazem 120mg a.m and 2.5mg p.m.
Now in control 93bpm..BP 123/70
Best ever meds for me.
Interesting that my recent operation and couldnt take anti-inflammatory drugs NATS, GAVE ME OXYNORM and Paracetamol x 500mg x 2.
Also stopping PRADAXA 110mg x twice dail for 3 clear days. Then 3 clear days after.
I believe PRADAXA has some bearing on my 'loss of energy'.
Has anyone else discovered this? Also I have a rash.
cheri
Cheri I'm also taking Diltiazam 120mg but it's not helping it used to work great for a few years then didntI can't take Bisoprolol as I have just had a stent nor anti inflammatorys as CAD means I can never have them.
I don't know about pradaxa as I take warfarin I just think slow or fast heart rates takes my energy nothing to do with blood thinners
Hi, you will find lots of helpful information on our A F Association website, download our Pacemaker Patient Information booklet from patient resources heartrhythmalliance.org/afa... and I can highly recommend registering for our virtual event 'Living with a Pacemaker' a great presentation by one of the leading experts, Dr Leon Ptaszek, plus presentations from other HCP's and even a patient's journey. For further details: heartrhythmalliance.org/afa...
Thanks Tracy I will read it all
If the telemetry is state of the art you get a download to the cardio scientist every night. This gives almost realtime exact data logging the parameters are monitored and exception reporting is available for exact analysis. I get a three month print out of results.The algorithms used by the monitoring computer allow a very accurate assessment of general overall heart health.
Maybe a bit "big brother" though as it can track your overall activity levels!!
I don't think a pacemaker will reduce a high heart rate. They are usually used to prevent the heart beat falling below say 60 beats to the minute. A fast heart rate is usually controlled by drugs such as Bisoprolol.
Hi fairgo45.My wife has had a pacemaker fitted as her heart used to stop in the night and she occasionally used to black out. Pros. She is much better now. Cons. We can't have an induction hob in our new kitchen. Just to put your mind at rest, you haven't been offered a pacemaker, you have been advised you NEED one. Jump at the chance, life has been so much better for my wife since.
Good luck.
Flyer.
That's good to hear and shame about the induction hob I'm also having a new kitchen put in and was going to have one as well.Is your wife on any other meds and did she have the av node ablated as well?
Hello again fairgo45.Wy wife has not had an ablation, just a pacemaker. She did suffer from af about two months after I was diagnosed with af she started with it, culminating with the pacemaker. She is on about 6 tablets per day including bisoprolol and since her pacemaker was fitted she has had only two angina attacks so she now has a spray for that which (touch wood) she has only used once. I had an ablation on November 5th 2019 which worked. I no longer have af but am permanently on anticoagulants. As I said, jump at the chance of a pacemaker, my brother has had one fitted also which although has not stopped his af completely has helped tremendously. As you can tell I come from a family of chronics. Still we are all still Alive.
Best wishes for your future.
Regards Flyer.
I got my pacemaker after 3 failed ablations and pauses after my 3rd ablation. It helped the pauses but I continued to have the tachycardia and could not tolerate the drugs which never controlled it anyway. Got the AV node ablation and all I can say is I wish I had been offered it from the beginning of my afib nightmare. Have been through lot of procedures and awful meds before I got to the av node procedure. Best thing ever. I was already 90% dependent on my PM so what’s another 10%? I know I’m totally dependent on it but my QOL is so much better now. The tachycardia could not be controlled and that made my life awful.
That's interesting Eliza
I've always thought the av node ablation a step too far but you have made me rethink
We're much the same 3 ablations failed then pauses and bradycardia and tachycardia semi controlled by diltiazam what did you take?
I have CVD as well and had a stent recently do you think I'd be wise to take your advice on board?
My experience and feelings regarding PM are similar. Right at the beginning of my AF journey a friend who had been a cardiac nurse suggested I ask about PM (2007) so I asked and was told in no uncertain terms by my then cardiologist that I didn’t know what I was talking about.
With the recent updates in the technology and more people obviously finding PM can be very beneficial, maybe it will become an option earlier in the process, especially for those of us who cannot tolerate any of the drugs or who just don’t find them useful.
Pacemaker doesn’t have any conscious effect on me. I presume it occasionally speeds or slows the heart. It leaves a 3 centimetre scar on left chest under shoulder and feels like a Bullet is lodged in your upper chest when you touch it.Best wishes.
My Mom had a pacemaker. No MRI’s (she was thrilled about that as she was claustrophobic). She also couldn’t use certain scales that had body fat functions, etc. I’m in the US and we did a check-in over a landline every other month. Good luck!
I didn't know that so thanks
You CAN have MRI’s with a PM nowadays. My PM specifically states it’s MRI safe. I’ve had 2 MRI’s since PM fitted. There needs to be good communication between the MRI radiologists and the doctors but all the modern PM’s seem to be OK.
I think I wrote a thread about it in about 2018/2019? I seem to remember that there was some discussion as in some places the radiologists got iffy about it (it was at a none NHS private outsourced facility).
I've been to see my cardiologist today he wanted to be sure I understood that if I chose a pacemaker alone it wouldn't do much more than the meds but if I chose to have an av node ablated as well it would help all my symptoms but I'd be pacemaker dependent and there is a 10- 15% chance of something going wrong and i I could develop cardiomyopothy and heart failure.I couldn't believe he was right so can anyone explain why he would say this when it was his recommendation in the first place.
My pacemaker is safe with MRI.
Not sure re the scales, I think I read that somewhere but can't remember where.
I can’t remember either but I & my husband use them anyway and not had a problem. I think they have to post warnings even if 99% of people never have a problem. We were told not to use central locking but when we investigated further again that applied to the older versions of pacemakers.
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