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Do you have a pacemaker?

rosyG profile image
35 Replies

I'd be very grateful if you would post any experience of having a pace-maker because of bradycardia- has this helped your AF, perhaps allowing you to have medication you couldn't have before- have there been any problems with your pacemaker?

I am interested for myself but we have also had a request for a speaker at our support group, on this topic,

many thanks!

Rosemary

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rosyG profile image
rosyG
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35 Replies

I have a pacemaker for bradycardia and this allowed me to take diltiazem and digoxin for AF but the diltiazem caused such excessive fatigue I soon stopped. The digoxin was stopped too, because my episodes of AF had shown no decrease in frequency, in fact a little increase in intensity. Now I'm completely unmedicated.

I have AF because of a congenital heart condition, so perhaps don't fit into the normal AF box. There have been no problems with the pacemaker, other than the pain and inconvenience of having to have the generator changed every ten years or so. I've had one since I was five, and am now 35 and am on my 4th pacemaker.

Anyone who tells you the insertion of a pacemaker is 'nothing' has had too many of the good drugs. I find there is 6-10 days of quite painful recovery as the shoulder is a place that moves all the time and it affects the positions you sleep in. Driving a manual car hurts for a week. Getting dressed and putting on a bra can be particularly difficult for the first week.

The scar is in an obvious spot so affects the types of clothes you wear if you don't wish to show it. Obviously it keeps my heart going (I'm almost 100 per cent dependent) so I wouldn't be without it, but I do get quite annoyed when people write off having a pacemaker as such an easy and painless solution. I notice mine nearly every day because it sits just under thin skin so you can see the outline of it. It can jut painfully into my collar bone when I move a certain way and if I carry something that presses against it, it can hurt.

Maybe if I was elderly and didn't move a lot, or care what clothes I wore, it wouldn't matter as much. However, if my recovery from surgery is up to two weeks as a 30-something, then I dread to think how the surgery is going to impact me when I am older and not as fit and healthy.

jennydog profile image
jennydog in reply to

Hi Kymdee, thank you for such an informative post. I may eventually need pace and ablate so I was very interested in your experience.

Have you heard of the new generation pacemaker which is like an AAA battery and inserted via the groin. Apparently it is long- lasting and can be retrieved via the lungs.

Best wishes.

in reply to

Thanks Kymdee , very interesting and helpful reply. Sandra

rosyG profile image
rosyG in reply to

Thank you for this - it's good to hear first hand and helps people to know what to expect

seasider18 profile image
seasider18 in reply to

You may be gone from the scene by now but much of our post is similar to my post pacemaker situation at day 15. It was fitted because of tachy bradycardia with many three second pauses between beats.

My heart rate was averaging 72 in the six weeks prior to it being fitted. After the pacemaker was fitted it was steady at a 100 bpm. when I was in hospital for an extended stay due to pneumothorax and needing a chest drain. I was prescribed Diltiazem 180mg XL in place of the Bisoprolol that I had stopped due its side effects to go with the 50mg losartan that I take. The Diltiazem has brought the rate down mainly into the low 70's. I do not feel much different from pre pacemaker as I’m still getting lightheaded when walking and at times when at home.

My chest feels heavy in the area where the pacemaker is plus a full bloated like feeling in that area of the chest. There is a pain from time to time on top of my shoulder and in the under arm area at the top of my ribs.

I again have a similar pain lower in my ribs that feels very similar to the pneumothorax pain but I think that I may have strained that area when turning awkwardly in bed or by the way I have been sitting or lying.

I did go back to hospital on day six when they did another x-ray that was clear and thy suggested that I had lung irritation that had not quite cleared up and to go back in four days if it was no better. It was better by then and this other rib pain started back two days ago.

jossikins profile image
jossikins in reply to

Hi!

Well, I AM older than you, considerably. I am 76 and had my pacemaker fitted last October, as a last resort for AF. It has been nothing BUT a positive experience. I DO care about what I wear (in spite of my advanced years!) and I am also extremely active. I am an artist and am presently in our French summer home in the hills of the Auvergne. I travel everywhere on my bike, did a 10 mile very hilly ride yesterday to do some painting on an exceedingly hot day (37 degrees by the afternoon) at the damming of the river Sioule, where the reflection of the trees in the water are a challenge to any artist. We are also lucky enough to have a pool, so I swim every day that the weather allows. And I do floor exercises every day. I am thin skinned and my pm shows a lot but I have learned to dress around it. I cannot wear something off the shoulder but plunging necklines are fine. I don't much like the sight of the pm, so obviously outlined beneath my aging flesh but, as it is sustaining a life style that I simply wouldn't have without it, I accept it. Cardioversions are all very well when they work but, after 4 ultimately failed attempts at that, I opted for the pm. Its purpose was not to cure the AF but to contain it in such a way that I am unaware that it is happening and my energy levels are back to where they were in the ever receding past. I say that you don't like it when people say the insertion of the pm was a piece of cake, but it really was!! My only complaint was, and is, that nobody warned me that it would be programmed to keep my heart rate low for the first month, in order to allow the heart to recover. Since my pulse wouldn't go above 80 bpm, I had no energy at all, to the degree that I became quite depressed (I am normally a cup-half-full person) because everything was such an effort and, on two occasions when I needed a sudden burst of speed, my knees just gave out on me. However, at the end of the month, the pm was reprogrammed to 60/140 and now it will allow me 155, so even the toughest road climbs no longer floor me. I am totally dependent on it and ten years is a long time, so I don't mind at all that the battery will have to be replaced. I guess, as I will be 86, I will be relieved enough that I am still alive to justify doing it!!!

CDreamer profile image
CDreamer

Hi Rosy

My husband developed AF which I captured on my ECG. He took the trace to the GP who referred him to local cardiologist who then diagnosed Bradycardia/Tachycardia, probably due to sick sinus syndrome. He is 80 and had no heart issues up until now. He had a pacemaker fitted so that he could be prescribed beta blockers for the AF in Late Jan of this year. He was admitted overnight, although a day procedure, because of his age for monitoring. He had to keep his arm below shoulder level for several weeks to ensure that the wires embedded, couldn't drive for about 10 days and found the shoulder slightly painful during the healing process.

After healing I would say that the scar is hardly noticeable but then he doesn't often wear low necklines!

His energy improved almost immediately and he was back playing golf within 8 weeks. Since then he has noticed some shoulder pain after golf and had treatment for shoulder mobility, the conclusion being that as the pacemaker is inserted into muscle, it does shorten the fibers, there will be scarring of muscle, tendons and tendons. I would say it is a minor inconvenience and much preferable to the decreasing energy levels he had before implant.

His HR is maintained at 60, he has not had an episode of AF since. He was told that it 'might' cure his AF but not to hope for too much. We are both delighted with the results.

Hope this is useful for you Rosy

PS 1st sentence should read AliveCor not ECG and by the way has never had the need for beta blockers since implant.

rosyG profile image
rosyG in reply to CDreamer

CDreamer this is very helpful- I think my AF may well be similar to your husbands- it's good to hear the fatigue is sorted now and also no AF!

BStanding56 profile image
BStanding56

I had a pacemaker fitted because of Bradachardia, although told it would not stop my AF, I have not had AF since and that is 18 months later, it was the best thing that happened to me, I had had numerous Cardioversion and 2 ablation. My heart is now considered almost back to normal, it was severely impaired 6 years ago. If you want further information email me.

realdon profile image
realdon

I had a pacemaker fitted in January 2013, having been diagnosed with paroxysmal AF in September 2013. I had been having dizzy spells and occasional faints, and the 7 day halter that I wore over Christmas 2012 revealed that when I was coming out of an episode of AF my heart was not beating for between 3 and 10 seconds which was causing the loss of consciousness.Previously, my resting pulse was 40-50 and now it has been set at 60. I did not find the procedure painful, a bit uncomfortable perhaps and I was conscious throughout.

Being male and aged 71, the cosmetic drawbacks are not a concern although it is visible, rather like an old bun penny beneath the skin. I am reluctant to sleep on my left side although I have been told that this would not be a problem.

Initially I attended the pacemaker clinic every 3 months, then 6, and now 12. An advantage is that the pacemaker records the number and duration of AF episodes that I experience, and if the total exceeds a certain percentage of the time then they will alert my EP who may wish to take further action eg ablation or change of medicines ( I am now

rosyG profile image
rosyG in reply to realdon

Thank you Realdon- tht's really helpful

Ang3lc4ts profile image
Ang3lc4ts

Good morning, I had a pacemaker fitted on the 30th April this year for Bradycardia as my heart rate goes down as low as 26 with quite long pauses. Pacemaker now set at 70. However, a pacemaker does not stop AF. I was in hospital last week and have been told I am now in permanent AF and have been given 10mg Bisoprolol and Digoxin, so far so good. No problem with pacemaker scar, it is barely visible.

Hope you all have a calm heart day.

Angel blessings

Diane

rosyG profile image
rosyG in reply to Ang3lc4ts

Thank you Diane- it's very helpful to hear of your experience

seasider18 profile image
seasider18 in reply to Ang3lc4ts

I was speaking to a lady last week who had a pacemaker fitted several years ago. She pulled the top of her blouse aside and I could barely see the scar.

I had my chest carved open three years ago to have my aortic valve replaced and that scar is quite faint now apart from where some bony nodules have formed.

Ang3lc4ts profile image
Ang3lc4ts in reply to seasider18

Hello seasider, since having a pacemaker, I had an AV Node ablation in April of this year and although I am told I still have AF, I do not get the awful symptoms that go with it.

My scar is very difficult to see now, I had mine glued which looked awful at first but healed brilliantly.

Hope you are keeping well, take care and Angel blessings to you.

seasider18 profile image
seasider18 in reply to Ang3lc4ts

When I asked about ablation or another cardioversion the consultant wanted to wait six months to see how I get on with the pacemaker.

They may have all the time in the world but I'm 80:-)

Ang3lc4ts profile image
Ang3lc4ts in reply to seasider18

Oh dear, I am only 78 and I saw an EP when I was 77 and after he looked at the results of my 7 day heart monitor, he wasted no time in giving me my Pacemaker and a year later doing the ablation. Mind you I did pay for an initial consultation and had the procedures carried out under NHS.

Perhaps they are hesitant to carry out the procedure because of your replacement aortic valve. Have you asked them why the delay?

Take care

Di

seasider18 profile image
seasider18 in reply to Ang3lc4ts

The aortic valve is no problem. Part of the reason for the delay is that I have suddenly developed a numbness in my feet and he wants the neuropathy or more likely the back problem sorted out first.

If you see my post on " My pacemaker experience" there is also my unanswered question as to why three people said I was getting a dual chamber pacemaker but just had a single chamber one.

Mmm, I paid for initial consultation with the heart surgeon but it did not speed up the operation that was not until over five months later. I turned down private when he said it was a six to eight weeks wait and twelve weeks for the operation on the NHS.

After I turned it down his secretary phoned to say that he could do it in two weeks on December 27th.

Rellim296 profile image
Rellim296 in reply to seasider18

Do you take flecainide seasider?

seasider18 profile image
seasider18 in reply to Rellim296

Over time I have had the killer drug Amiodarone that gave me untold problems and Bisoprolol that took my heart rate into the 30's plus side effects.

My heart rate went up from 72 to 100 after the pacemaker was fitted and I was then prescribed Diltiazem 180MG XL to go with the Losartan I had been taking. I am of the opinion that the Diltiazem dosage is too high and that is causing my light headedness.

A patient in when I was having the pacemaker fitted was taken off Diltiazem as he had swollen ankles was dizzy, having falls and passing out because of it and had broken his clavicle.

Rellim296 profile image
Rellim296 in reply to seasider18

There's no miracle drug is there - no gain without pain! I mention flecainide because having numb feet is a known side effect. But it sounds as if for you it's not the culprit.

seasider18 profile image
seasider18 in reply to Rellim296

I initially blamed it on Bisoprolol as it has effected others in that way. Often it is not the drug itself but the other ingredients used to make the capsules or tablets. Different makers of generic drugs use different ingredients from others in their version of a drug.

Diltiazem has thirteen different ingredients in its capsules.

Ang3lc4ts profile image
Ang3lc4ts in reply to seasider18

Oh dear, sorry about your back problem. I have very bad osteoporosis and spondylosis and I get numbness in my legs and feet. I have had 14 fractures in six years but my heart is good at the moment, so I feel blessed with that result.

I am in Cornwall and I have to say I have had marvellous treatment and care so I have been very lucky.

I do hope you are able to get things sorted out soon because it is debilitating feeling so unwell all the time.

Angel blessings and have a calm restful day.

Di

seasider18 profile image
seasider18 in reply to Ang3lc4ts

In Cornwall, you must have Doc Martin or are the Cornish Pixies helping you out?

I imagine that your only hospital without travelling will be in Truro.

Ang3lc4ts profile image
Ang3lc4ts in reply to seasider18

Ha ha! You are right, it is the infamous Treliske Hospital which is always in the news because of poor results but I have to speak as I find, I have no complaints.

Beautiful sun shine here, hope it is with you as well, warmth helps my bones.

Take care.

Di

seasider18 profile image
seasider18 in reply to Ang3lc4ts

Our caretaker had a miserable holiday down there two weeks ago with continual rain.

JMM7 profile image
JMM7

I've had two ablations with no real long lasting help to my AF. Also had periods where my heart stopped beating for 5-10 counts, like others on this post. I finally agreed to the pace maker, which I was avoiding because it made me feel old. I am 62, so I am old, but there you go! Anyway, it has been 4 months. I take lowere doses of Meds, have had no AF symptoms since, so that I have almost forgot ton how bad it was. I wish I had gone the pace maker route to begin with. Recovering time was more annoying for me than painful. And my husband did learn to put my hair up in a clip, wash it and give sponge baths-so some of it was pretty good!

rosyG profile image
rosyG in reply to JMM7

That's very encouraging- many thanks JMM7

marytommo profile image
marytommo

Hello Rosemary,

Yes I have a pacemaker, since March 2011, all going well and able to take more medication to control the persistent AF. Have been able to reduce Bisoprolol to 1.25mg in morning and still take 2.50mgs in evening, also 2.50mcgs Digoxin in evening. Warfarin and Avorstatin. Unfortunately I developed PMR this time last year but have reduced from 20mgs to now 5.50mgs Prednisilone successfully. Suppose trying to take this in my stride and not get too stressed out with it all is helpful. The AF usually recurs if I overeat or drink, overtired, (not sleeping well/toobusy), worry, etc.! Very sketchy account but can add to it if you think

it might help.

All the best

Rosa

rosyG profile image
rosyG in reply to marytommo

That's very helpful Rosa and good advice on life style issues too. Thank you

Varina8 profile image
Varina8

Rosy G,

I am female, now 71 and had since young days rest puls rate 40-50. AF dg when 62 and sick sinus. Pacemaker was implanted and bisoprolol 5-10mg. New PM 6,5 years later. I find both procedures minor without any special pain, just a couple of weeks careful with arm movements. Now the scars and the pm are of course visible but I finnd it as a minor inconvenience. My AF has always been very symptomatic with PR over 200 so I needed several years bisopr 10 and even extra 5mg. PM made that this medication was not too harmful. Anyway, I had AFx1/month until 2013 when it got worse, 2-3 times/week always lasting 12 hours. Dronedaron did not make it better. Now medicated 12 months with propafenone (Arythmol) 150mgx3 and 1,25mg bisopr. No AF except for the 3days I tried to take only 150x2. Both PMs have been reliable with no harm, not making my AF disappear, but has made the medication possible with far less side effects.

rosyG profile image
rosyG in reply to Varina8

Many thanks Varina- it's good to hear your AF is under control- very helpful to hear about your pace-maker experience

rosyG profile image
rosyG

I hope all go well for you Jo

seasider18 profile image
seasider18

The leadless ones sound well worth waiting for. Was it you who posted about them previously? They are being done at Southampton.

JaneEllen720 profile image
JaneEllen720

Had pacemaker implanted 2 weeks ago. Looking for information on women and pacemakers. Now dealing with the bra strap comfort problem and all the bruising. I am thin and pacemaker stands out, can trace the outline, on my left shoulder. But this beats fainting all the time and death. So, I deal with it, and gladly. I did get a MedicAlert necklace with "pacemaker" on the back of the heart shaped stainless steel part. Learning what to do and not to do. Getting used to holding cell phone in right hand. Any advise is appreciated.

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