Pacemaker with Medications

Hello all, I have Atrial Fibrillation (SSS), I have always been fit and used to have a resting pulse rate of 58 and BP of 120/80. One day I collapsed and was found to have AF.

My first cardiologist prescribed a beta blocker which lowered my blood pressure to 90/60 and my pulse rate to 45 but did nothing to stop the AF.

I found a new cardiologist who stopped the beta blocker and prescribed amiodarone which has worked very well, it gave me my life back, no AF, no side effects, I could run again, and my blood pressure returned to reasonable levels. BUT my pulse rate has stayed low and, if anything is falling slowly, usually 40 to 45 (last night down to 37). I struggle to get my heart rate up when exercising. I am losing fitness, losing my balance, forgetting things, less energy, and I can't run anymore.

I now need minor surgery for gallstones but the surgeon will not operate because he is worried my pulse is too low so I need to do something.

I went for a second opinion and the amiodarone was changed to digoxin which is not working.

I am thinking a pacemaker is the answer however I have two important questions:

1   With a pacemaker set at 50bpm will I be able to do a proper workout and get my heart rate up when I exercise?

2   When I go into AFib my heart becomes erratic with my pulse rate jumping around all over the place from 40s to 170s. Logic says that a pacemaker will stop my heart from going too low but I will still need to take a medication such as amiodarone to suppress the AFib highs in my pulse rate. It seems that the pacemaker and the amiodarone will be in conflict with each other.

Has anyone experienced the same issues?


8 Comments

Some misinformation here.

by AgentX86 - 2023-05-27 03:06:43

Afib and SSS are different issues.  Afib isn't a sinus node problem at all, rather a chaotic disturbance coming from somewhere in the atrium, other than the sinus node.  SSS, as the name implies, is a failing sinus node. Afib will cause an erratic (irregularly irregular) heartbeat, usually tachycardic. SSS is a low heart rate and reasonably regular.  There may be pauses when the rate gets low enough.  A pacemaker can fix SSS (it's what they do best) but not Afib.

It's good that you were taken off ameoderone.  It's a very, very, powerful antiarrhythmic but also very toxic. As it turns out, effective antiarrhythmics are toxic in about the same proportion as they are effective.  You don't have any information in your bio so I don't know where you live but Digoxin is rarely used in the US anymore.  There are more efffective drugs.

To try to answer your questions

1) Who knows?  Why do you care about your heart rate?  If it feels good, it is. Mine was in the 40s to 50s and is now 80 during the day (50 at  night). If you're still chronotropically competent (your SI note will still increase heart rate with exercise) the only think a pacemaker will do is put a floor on the heart rate.  If you're chronotropically incompetent (heart rate doesn't change) you'll need some sort of rate response in your pacemaker to fake it. It sounds like you're in the CI category. Depending on the exercise, it may be a problem or not much of one.  Walking/running can be easily dealt with.  Cycling is much harder and swimming is really tough for most pacemakers. I've found that lifting weights doesn't work (not moving enough to kick in the rate response).  Climbing stairs isn't good either because I'm expending a lot more energy that my pacemaker thinks I am.

2) Yes, you have it pretty much right.  The pacemaker will allow rate supressing drugs (beta blockers, primarily) to be increased, while supporting the lower rates caused by these drugs.  I would try anything but ameodereone for more than the sort term (few months).  My EP prescribed it for me between ablations.  It worked (the ablations didn't).  It also damaged my thyroid, which isn't unusual. At the beginning of all this, my cardiologist said that if I were 85 instead of 65, he'd keep me on ameoderone.  It was a matter of what would kill me first. At 85, ameoderone might not have enough time.  At 65, the chances were very high that it would. 

There are a lot of different, safer, drugs.  Usually, they'll step up the ladder to more and more potent antiarrhythmics (and more and more toxic) until something works.  However, they're only needed to mainain quality of life.  Afib is completely handled by maintaining heart rate (below 100) and antocoagulaion.  Stabilizing rhythm is needed only to treat symptoms of Afib.  Mind over matter.  If you don't mind, it doesn't matter.

Again, you have nothing in your bio so I don't know how old you are or how long you've been in Afib, or how bad the AF is.  If you're symptomatic and early on the road down into the pits of Afib, I'd recommend an ablation.  EPs often want to spend a lot of time on drugs before trying ablations but it's really wasting precious time. The longer the Afib goes on (including time on drugs), the lower the chance that an ablation will work. Again, this is a quality of life thing.

I hope this post is readable.  I hate the edit window here.

AFib

by Julros - 2023-05-27 14:18:24

Hello, and and welcome. 

You are asking good questions and you will get many answers. I caution anyone about taking medical advice from an internet forum of anonymous people who may or may not have medical training. 

As to your original questions, yes, I have experienced a fib, as well as a flutter, and have a pacemaker. In my particular case, my heart does not increase due to a block in my conduction system, so I depend on my device to keep my heart rate and 60 and higher. It has been adjusted to speed up for exercise. I currently take 2 beta blockers to suppress a fib and VT. I also just had a second ablation, which so far, is working well. 

Amiodorone can be quite effective, and not everyone will experience negative side effects. My sister takes it, and other than need to closely monitor her thyroid function, she has had no ill effects. A cardiologist is trained is choosing and monitoring therapy for various situations. Most treatment is aimed at quality of life, so yes, if a fast heart rate is causing issues, then medication will likely be prescribed. You may also need an anticoagulant to prevent strokes. 

Gallbladder surgery

by Lavender - 2023-05-27 20:33:20

I'm addressing what you said here:

"I now need minor surgery for gallstones but the surgeon will not operate because he is worried my pulse is too low so I need to do something."

Before I knew I needed a pacemaker, I had laparoscopic gallbladder removal. The surgery went great until they took the anesthesia away. I bucked on the table, and my heart went to 10 beats a minute. They tried injections of atropine (It can be used in an emergency to treat a slow heartbeat.) It didn't help. 
 

I was unconscious. I awoke with emergency patches stuck to my chest and back-in preparation to use the crash cart. I had several people looking down on me. 
 

I know the surgeon was upset by it all because he told me at my recheck that he couldn't believe that I still hadn't been referred to an EP.

 I have a rare arrythmia called ventricular standstill. When it's not acting up, all my vitals were perfect. No one ever caught it. Even after that happened during surgery... I went on with my normal life. Nine months later, the fainting started. That went on for six months. I finally had a thirty day monitor on which caught the ventricular standstill on the tenth day-when I dropped to the floor in my own home with a 33 second pause of my heart. THEN I got a CRT-P resynchronization device-a pacemaker. 
 

So, I can see your gallbladder surgery being put off til your heart rate is figured out. The surgery itself is so easy and an easy recovery. They need to make sure you can take it and no surprises come up. 

Ameoderone

by AgentX86 - 2023-05-27 22:41:43

There is no question that ameoderone is effective but it is dangerous. Look up the side-effects.  It affects every organ in the body, from the eyes down.  Its half-life is in the months, so once the body is loaded (it takes a huge dose to start), even if you stop immediately, it'll be in your syestem six months later.  Again, look it up.  It's bad stuff. 

That's not to say that it doesn't have a place but understand what you're getting into. There are probably other effective antiarrhythmics that are less dangerous.  They're all serious drugs and have to be treated as such. Do your research here.

 

SSS, AFib and Gallbladder

by Mirkin - 2023-05-28 04:57:53

Thank you all for your very useful comments.

I am 74 and live in South East Asia where medical care can be hit and miss. I find it important to fully investigate diagnosis and medications - hence my questions. Thank you for and yes I fully appreciate that on this forum I am merely sharing information rather than getting medical advice. In a way I am collecting hints as to what to ask my consultant.

I fainted a couple of times before being diagnosed with arrhythmia 2 years ago. I was on a beta-blocker (concor) for a year then was diagnosed with SSS and changed to Amiodarone.

Lavender your story about your gallbladder sounds terrifying and your contribution is very much appreciated - thank you.

Agent X86 your information about the difference between SSS and Afib is very useful. When I was diagnosed with SSS the consultant pointed out that when my sinus node fired my ventricular node was always in sync with the sinus node. This suggests to me that the only problem is that my sinus node fires erratically but the rest of my heart is in synchronization.

As a result the SSS diagnosis now makes sense which results in both bradycardia and tachycardia. I have had bradycardia for several years. As I said the Amiodarone has worked well but the bradycardia seems to be getting worse.

This suggests a pacemaker might solve the problem. Whether this means I won't need a drug to suppress the Tachycardia I suppose remains to be seen.

Julros you have a pacemaker that is adjusted to increase your heart rate during exercise. There are many pacemakers on the market that provide different functions and probably at a wide range of prices. This forum might not be the place to discuss which pacemakers are best or the prices they cost but is there a way to investigate which are best and the features they offer?

Once again thank you all for your invaluable help.

 

Pacemaker selection

by Julros - 2023-05-28 16:21:07

You may not have a choice about pacemaker selection. Many facilities have contracts with vendors and they offer only one brand. To my understanding, all modern pacemakers have the ability to respond to activity, also known as rate responsiveness. From reading on this forum, and my own personal experience, you may have to push to get that setting adjusted for your needs. 

I suppose you could look at each manufacturers' website for each feature. My EP chose the device that she felt best suited my diagnosis: a Boston Scientific Vigilant X-4, CRT-D. I don't think there is a way to compare costs, due to contracts with providers and facilities. 

I believe it is possible to have sick sinus syndrome (SSS), and then develop atrial fibrillation. SSS concerns the sinoatrial node, located in the right atrium.  I have cared for patients with SSS, whose heart rate varied from too slow to too fast. They were often treated with beta blockers, plus a pacemaker. Atrial fibrillation is caused by unorganized electrial signals, usually orignating in the left atrium, around the pulmonary veins. It may or may not result in a fast heart rate. Again, beta blockers are often used, but there are many antiarrhythmics that can be effective. They all have side effects and contraindications. 

I hope you recieve effect treatment and you can be as active as you want to be. 

 

Extracorporeal shock wave lithotripsy

by Selwyn - 2023-05-29 12:37:46

Hello Mirkin,

Have you asked about this for your gall stones? Whilst not everyone is suitable, you do not require a general anaesthetic. It should not affect your heart.

I hope your digoxin level is being monitored. 

Shock Wave Therapy

by Mirkin - 2023-05-29 21:45:47

Thanks Selwyn, I would much prefer to lose the stones but keep the gallbladder. Not a lot of options here but I'll look around and see what I can find.

I am off to see a very good cardiologist today and want to drop the digoxin, I have been feeling terrible since I started taking it. I had no problems with the amiodarone apart from the low pulse rate and inability to get the pulse rate up when I needed to.

Thanks for the tips Julros I will be asking a lot of questions about pacemakers.

 

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Member Quotes

I'm 35 and got my pacemaker a little over a year ago. It definitely is not a burden to me. In fact, I have more energy (which my husband enjoys), can do more things with my kids and have weight because of having the energy.