Pacemaker decision

Hi all, I'm looking for input about overlapping symptoms to see if anybody experienced something similar.  I am constantly exhausted and have brain fog. GP sent me to specialists.  Cardiologist had me wear a monitor and HR was in 20's couple times and then up to 153 another time. He sent me to EP who said I had  Type 2 EV block and was a good candidate for PM .  I told him I was recenlty diagnosed with fibromyalgia and chronic sinus issues which have the same symptoms.  He suggested an implantable recording device for 3 years.  I'm a bit confused and concerened because it seems if the IRD  reports the same thing as the wearable monitor that I would have to have it removed and possibly a PM inserted.   Also, I'm concerned about making the right decision about whether to have a PM as it is for a lifetime and I want to be 100% sure I really need a pacemaker as exhaustian and brain fog may be due to other health issues.  Sorry if this sounds silly as this was a surprise to both my cardiologist and me as he ran several other tests and said I had a very strong heart until we got the monitor results back and said sending me to EP.  Thank you for your feedback.


8 Comments

2nd degree heart block

by AgentX86 - 2021-05-20 23:19:57

I think the IRD is a good middle ground.  As your doctor said, it can monitor you 24/7 for years.  If you really do need a PM, it'll tell you.  There's no problem replacing it then.  If not, you really haven't lost much. Depending on the particular AV block, a pacemaker may not be needed (there is a possibility that it'll resolve itself.

Yes, you need an EP. 

Reveal Linq implantable heart monitor

by Gemita - 2021-05-21 04:34:28

While it is true that a short term, external wearable monitor records and sees what the implantable recording device sees, it is equally true that the implantable device runs for a much longer period and therefore has the ability to pick up something that may not be captured during a routine 24 hour, 7 day or even 30 day monitoring period.  The implantable monitor is also not subject to error as an external monitor could be from user difficulties or accidents with the monitoring equipment or patches during the period of monitoring. Once the implantable recorder is in place and you have recovered from the minor surgical procedure, you won’t feel it anymore and you can be safely and effectively monitored 24/7, for up to 3+ years without any difficulties.

I had one that lasted for 3+ years.  The best decision I could have made.  It gave me and my doctors all the evidence needed to treat me confidently with a pacemaker, when external monitoring often failed to see the full picture because of my initial intermittent nature of my heart condition (Sick Sinus Syndrome) and other electrical disturbances.  I see you have 2nd degree block which is also an electrical fault.  Electrical faults can all be so variable (intermittent) which is why longer term monitoring is really the way to go.

I had my implantable monitor removed a few years ago, well after my pacemaker implant because the battery was still functioning and my EP wanted to see how well my pacemaker and medication were working to treat my electrical faults effectively.  The implantable monitor according to my doctors, was superior to the pacemaker monitoring capability so we decided to leave it in place until the battery ran out rather than explant it at pacemaker implant time.  Many patients and doctors decide to leave the little capsule in place because it does no real harm and cannot usually be felt.   

Your statement “Also, I'm concerned about making the right decision about whether to have a PM as it is for a lifetime and I want to be 100% sure I really need a pacemaker as exhaustion and brain fog may be due to other health issues” is really why an implantable device (mine was the Reveal Linq recorder) is such a good idea.  Like you, my heart is strong, it just has some electrical disturbances but these can play havoc with our ability to perform everyday activities.  Over time electrical disturbances can cause other health issues too and may cause a sudden loss of conciousness anywhere, at any time, with sometimes devastating consequences.  Often the block can make it difficult for your heart to pump blood to other areas of your body, so your muscles, organs, brain do not always receive enough oxygen to function and they all suffer. 

I won’t comment on your fibromyalgia and chronic sinus issues.  We all have to face additional health issues as well as our complex heart issues but you can be absolutely confident that the implantable monitor will be able to differentiate between what is heart related and what is not.  If you eventually need a pacemaker then I can only see real benefits for you in getting a pacemaker sooner rather than later and that other health conditions could well improve from a steady, reliable heart beat.  Good luck

different opinion

by Tracey_E - 2021-05-21 11:20:18

It's true that the brain fog may or may not be from the heart block, however a rate in the 20's is never good and it's very hard on the body when your body is already fighting other battles. Did they say how long and how often your rate dipped that low? Heart block does not get better on its own. It stays the same sometimes but usually gets worse. I'd probably just skip right to the pacer and be done with it rather than have a surgery now for the recorder then again later for a pacer.

This is coming from someone who procrastinated years getting the pacer and has now been paced more than 25 years. In hindsight a year one way or the other wouldn't have made any difference, except I would have been feeling better sooner had I gotten it early. Again, JMHO.

easy

by dwelch - 2021-05-22 22:43:29

heart block is easy to see on an ekg, type 2 sure it may not happen while in the office and they are looking.  But if you truly have heart block then if you have to have a heart issue heart block is it.  Trivial to fix with a pacer.  Not fixing it of course can be lethal.  I think the only question here is do you have heart block or not.  If so the answer is simple and the time is immediately.

Pacemaker or Not?

by bobrichards55 - 2021-05-23 12:07:45

Hi,

 

I agree with others who suggest getting the IRD.  This will tell you the story.  Heart block can come and go so you might not need a pacemaker at this time, especially if you are only 2nd degree.  Also you can see when your heart rate drops and see if you noticed it (keeping a diary of feelings like lightheadedness is a good idea).  

I was in 3rd degree block for several days; my heart rate dropped but I felt fine.  They told me that a pacemaker was my only option.  I am now pacing at about 30% and still wonder if I really needed the pacemaker;  maybe short intervals of block or delayed signals wouldn't do me any harm.

Be assure as you can before committing to the pacemaker.

Bob

 

Bob

by Tracey_E - 2021-05-23 13:01:27

You need the pacer. One in three beats is paced, that is not insignificant. That's one third of the time your body would not be getting the oxygen it needs. Whether you can feel it or not, it's doing damage to skip that much.  The  other problem with skipping beats is the heart can stop and not start up again. 

Skipping beats.

by AgentX86 - 2021-05-24 13:15:57

Think of it this way.  What would happen if you had 2000 beats in a row, then skipped "only" 1000.  That's still ~30%.  There is no question here.

 

What Questions to ask my EP?

by Lightharted - 2021-05-29 17:40:02

All. I am so grateful for the wealth of knowledge you provide and sharing your experiences. I wore the zio patch monitor for 14 days over Christmas resulting in 3 episodes of 2nd degree above block slowest hr 24bpm. And 1 episode of supraventricular tachycardia at 3 sec intervals. I asked to be retested and wore the monitor in April for 14 days. My doctors NP called me with results this week of six episodes of 2nd degree above block slowest hr 27 bpm. 4 episodes of supraventricular tachycardia all 5 sec intervals.  She said since these results are similar she feels PM is direction to go but also decided to schedule me next week for a nuclear stress test then the following week a fup with EP.  Are there any specific questions you would recommend I ask the EP?  Once again I really appreciate ur time as I am alone on this journey but feel better being part of this community knowing you all experienced your unique journeys with heart matters and am glad to hear how well you all are doing. I hope to be able to contribute more once I have more experience. 

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