Feeling worse than before pacemaker

So did I feel worse initially

by Gemita - 2020-09-15 12:20:51

Yes I felt exactly the same almost two years ago.  Please try to remember that your doctors may have put you on medication for your AF now that you have a pacemaker to prevent your heart rate from falling below a set limit.  Any medication is bound to cause symptoms also.  What is your minimum heart rate set at ?  My higher heart rate of 70 bpm is keeping my AF relatively under control, but of course so much will depend on what meds you are on and dosage.

Unfortunately a pacemaker cannot stop AF or the high heart rates from AF.   Was this not explained to you ?  All it can do is to enable your doctors to give you meds like a beta blocker or calcium channel blocker to control your heart rate and AF, or any hypertension without fear of these meds lowering your heart rate below the pacemaker lower limit.  Treatment for AF  might also include anti arrhythmic meds and/or an ablation.  However I found that by pacing at a higher heart rate, many of my arrhythmias are better controlled.

You are not making a big deal out of this.  You are definitely feeling what you are feeling.  You are probably getting ectopics like PACs (premature atrial contractions) or PVCs (premature ventricular contractions) which doctors are generally not worried about unless they are really happening frequently.  You may also be getting episodes of arrhythmias like AF which is causing breathlessness.  I also regretted getting my device initially especially as I started getting tachycardia every night for the first three months which I thought was caused by my pacemaker.  But it will pass and hopefully you will get better as you get used to pacing and any new meds and your body recovers from the trauma of the implant procedure.  Don’t be afraid though to tell your doctors if something is worrying you.  I didn’t change anything pacemaker wise for the first three months, but I did change my meds and that made a real difference

Feeling worse than before pacemaker

by Dengle97 - 2020-09-15 14:22:11

Thank you for the response...my rate is set 70-120 and I also had an ablation along with the pacemaker implant so I'm not sure if that has anything to do with what I'm feeling as well. I just spoke with my EP and he basically dismissed my symptoms, he says that there's no possibility that my heart is racing with a pacemaker and my heart is fine ,but gave me an appointment for Friday to check the device, needless to say that didn't make me feel any better ...thinking of switching to a different doctor 

What type of ablation did you have ?

by Gemita - 2020-09-15 15:04:37

Hello Dengle97,

I am afraid an ablation can take at least 3 to 6 months to heal, depending on the type of ablation you had.  Did you by chance have a

(1) Pulmonary Vein Isolation ablation procedure to try to stop your AF ? or 

(2) an AV Node ablation procedure to try to prevent your AF from affecting you?

Ablation (2) would stop the fast heart rates and AF irregularities from getting through the AV Node to affect your ventricles but not ablation (1),  if ablation (1) was not successful.  The fact that your EP says there is no possibility that your heart rate can race with a pacemaker, makes me think you had ablation (2) ?

If you had ablation (1) you could still be healing and you can still get breakthrough AF which can take up to six months to settle down.  In this case, you could still be getting fast heart rates.  With ablation (2) your AF would still continue to fibrillate in your upper chambers but as I mentioned above, the arrhythmia and high heart rates would not be able to get through your AV Node (if it has been ablated) to affect your ventricles and therefore you should feel less symptomatic. I can only assume if you have had ablation (2) you may be having difficulties with pacing in the right ventricle and getting ectopics which should settle down.

Have you by chance got any home monitoring like Kardia Mobile or a good blood pressure monitor for recording your heart rate or recording an ECG when you are symptomatic?  You could then take the evidence to your EP on Friday when you go for a device check.  If you have lost confidence in your doctors, I would consider getting a second opinion too.

Feeling worse ...

by Dengle97 - 2020-09-15 21:02:11

I had an AV node ablation. I have monitored my BP and HR, my diastolic seems to run a little elevated but not too bad  and rate fluctuates between 70-89,which isn't too bad while I'm awake. It seems like my symptoms get worse at night when I lay down and try to sleep… I sleep in increments then I wake up because I feel like my heart is pounding hard and I have trouble breathing, I don't know if I'm developing anxiety or what is going on But I do know that I know what I'm feeling and I was not feeling this things before the surgery. I should mention that I also have CHF but it was controlled with medicine and EF has improved to 35-40% ( based on my last echo a couple of months ago) like I said before all this is scary because it feels like I have backtracked and feel the way I did when I initially got sick but I'm being told ( by doctor) that everything looks OK… Thank you for your input, I really appreciate it

AV ablation

by AgentX86 - 2020-09-15 23:22:45

I too have had an AV ablation.  At first my EP set my heart rate to 80bpm. Evidently there is a higher than normal occurance of SCD after an AV ablation when the heart rate is set too low.  After a month he set it to 70bpm (and was to set it to 60bpm a month after that). 

After the reduction to 70bpm I started having miserable bigeminal PVCs.  It took a while to track the problem down and I had to send a remote transmission to catch it in the act.  After than, he set my heart rate back to 80bpm, which pretty much solved the problem.  I complained about sleep with the high heart rate so he set a nighttime rate of 50bpm. 

Once in a while the PVCs poked through at night but it was overall a good compromise.  The problem has since gone away but my daytime heart rate is still set to 80bm.

Perhaps you could try a higher resting heart rate.

Feeling worse ..

by Dengle97 - 2020-09-15 23:49:27

Thank you...I will mention that when I see my EP tomorrow. It's encouraging to see that others have experienced similar situations/issues and that there's hope .

Good luck with getting this sorted

by Gemita - 2020-09-16 06:53:15

I agree totally with AgentX86.  Optimum heart rate setting at night might be the key to helping with your problem, especially with your CHF when breathing could become more laboured at rest.  

I would also ask your doctors about the possibility of sleep apnea which will cause trouble sleeping and symptoms such as you describe (waking to fast pounding heart beat/breathlessness), although of course I realise that you do have AF as a cause also.

What I do not like is the way your doctors seem to be dismissing your symptoms as though they are insignificant or could not possibly be happening.  This in itself would trigger alarm bells for me and I would want to move on.  I expect they are trying to cover their tracks because they fear being held responsible in some way.  My EP when I was considering an AV Node ablation, did say that sometimes (although very rare) an AV Node ablation may need to be repeated since it can fail.  So you might ask whether this could possibly have happened?  Maybe they will need to monitor you to detect what is going on, so please challenge them and don't be put off

Feeling worse than before with PM.

by Sybarite - 2020-10-04 20:00:00

I had the same thing last year. An electrode improperly implanted in the ventricle.
So the PM worked in sequences.
I was very sore for 3 months, my cardiologist told me I had to get used to it etc., I changed cardiologist, I was in a hospital where in an hour they found the problem.
Another surgeon put the electrode back in place in the ventricle.

Good luck !