Regular exercise

Talk with EP

by Theknotguy - 2018-11-29 07:07:30

You can always talk with your EP and see if they will adjust hr to a lower setting.  Some people are more comfortable at 50 bpm.  

The 60 bpm is a common setting where most people can get along fine.  But some people do have problems with that.  

Sounds like your adjustment has gone along very well.   Happy to hear good news.  
 

resting rate

by Tracey_E - 2018-11-29 08:28:35

It's possible for your resting rate to drop as you get more fit, but under 60 is still abnormal whether you're fit or not so that's why they start us there. You can ask to try 55 or 50, see if you feel better. 

Regular Exercise

by Keithwhelpley - 2018-11-29 15:53:15

Thank you for all for your tips. I think I will let this alone for awhile and see how it goes as I progress with exercise. I know that, abnormal or not, 60, is high for my resting rate, but i'm willing to give it a try. I notice that I don't sleep all the night through, but that may be because of other things.

I haven't fully accepted the PM, as there are no reasons given for me having it. It was put in with the diagnosis of SSS, but that later was determined to be a misdiagnosis. I don't have Heart Block, according to my EP. And when I ask why he put a PM back in after they determined in INSTEAD" needed an ICD, he could only say "ask your first doctor." I've fired both by cardiologist and EP and am with another cardiology group, but this group also is reluctant to challenge what was put in before regardless of the two misdiagnosises. They have run tests and not come up with anything to label. The best I got from a technician was: "Something's going on." My atrium is being paced at 7%. Not sure what that means, but I'll bet my pacing would be even less if my native rate was allowed in.

In the meantime, I am resolved to live my life and get as active as my heart, mind and spirit wants. That means three hour bike rides and 2 mile swims. My heart functions best when its beating at 120 or higher.

My search will not end until a doctor gives me a reason and a name for why I have this thing.

Thank you all.

You Need It

by NiceNiecey - 2018-11-29 21:08:06

I always wonder how everyone has so much TIME for this much exercise. You're probably independently wealthy so now the rest of us can be jealous.

I've seen some of your previous posts and if you're atrial pacing at 7% then you need your device. Even if your medical team can't give you a solid diagnosis, you're skipping beats without it. And I think there is some confusion about your 'native rate' being allowed to kick in. The PM only kicks in if your heart misses a beat. Theoretically, you could ask to have your device lowered to 50 BPM and then see how often you pace. Otherwise, I'd forget about it since you seem to be feeling really well. And BTW, when I got my PM, nobody asked me what my "typical" HR was; they just set it to 50 BPM. Had they asked, they would have known that I was usually 80 BPM resting HR. I felt lousy at 50 BPM and they quickly upped it to 60 where I now happily (and safely) pace 100% both chambers.

Niecey

Don’t be jealous.

by Keithwhelpley - 2018-11-29 22:23:32

I’m far from wealthy Niecey. My workouts have been a true lifestyle that included owning and operating my own tiny business. I literally traded money for time and never regretted it. 

Regarding my situation, I’m not ready to give the docs a pass. I dont think anyone should. Pacemakers don’t just sit there and jump into action when a beat is missed. I feel it. The low rate keeps you there until it senses you need more rate. Adjustments are made and can work in many situations but not all. That is why you go along feeling great during mild or moderate activity but ask a little more heart rate and not get it means you have to slow or even stop to catch your breath. Brand new feeling for me. Never felt that until I got the pacemaker. It usually comes doing chores around the house or at a trade event. Never when I swim laps or do a jog or fast walk. It does come and go during bike rides because my upper body is so stationary. 

My hunch is my native rate is slower than 60 bpm and I’ll likely try it at 55. We And all my years of exercise tells me that one’s rate will slow the more fit they become. 

And regarding my heart team, none of them has a pacemaker. All they can tell me is how they think it works. They really don’t know. They aren’t even engineers. Everyone’s body reacts differently. They were wrong about my SSS and wrong about heart block, and wrong about magnesium. But still I have a pacemaker. That’s why I won’t give them a pass. 

Regular exercise-Do you need a pacemaker?

by Enrique - 2018-11-29 22:48:32

I had my first pacemake 2 years ago (I am in the second pm now). At that time I was doing fine without one. My natural heart rate was low, in the low 50's. But I have always been fit (jogging and exercising 3-4 times a week) and the low rate was attributed to being in good shape. Sometimes I felt uncomfortable after having dinner, nothing serious, until one day I fainted in the gym. My heart rate wouldn't go up enough.

That's when my doctor told me that I needed a pm. It was a shock. But the risk of not doing or delaying was high; the underlying condition that was causing my low rate - a case of A/V block - would only get worse and I didn't want to faint when I was driving....

The settings in my pm are a low of 52 and a high of 145. It works great for me. I still run 10 km or more without problems. All the minor symprtoms that I had disappeared. I am glad that I had that pm when they told me I needed it.

Of course I always took care of myself: I eat healthy, I am not overweight. I don't smoke, etc. I am 70 years old

Regular exercise-Do you need a pacemaker?

by Enrique - 2018-11-29 22:49:44

There  was a typo. I had my first PM 12 years ago

giving them a pass

by Tracey_E - 2018-11-30 12:40:00

The fact is, with as much as we know, there is a whole lot more they don't know and  very few electrical problems have known causes. it's not your doctors slacking, it's just the way it is. They can't tell you what they do not know. Very few of us here have known causes. 

Something I've always wondered, how many people who think they have low rates because they are athletic actually have the early signs of electrical problems. If someone doesn't have symptoms or fit the mold for cardiac patient, no one digs deeper. Before I was paced my rate was 44, resting or on exertion. I can't telll you how many medical staff over the years said "oh you must be athletic!" when in fact I had never done a sport in my life because I didn't have that kind of stamina. I looked young and healthy so the (way off base) assumption based on resting rate was athlete. 

Simple questions

by Gotrhythm - 2018-11-30 15:09:39

There are not many times I would disagree with TraceyE--she knows a lot more than I do about everything pacemaker--but this time I do.

Do I need a pacemaker? is a simple, and surely a fundamental, question. A straightforward answer is not too much to expect.

Keithwhepley's question, why was I given a pacemaker? is a little bit harder--if the person being asked is not the doctor who did the implant. But still it opens the door for the question, do I need a pacemaker now, and what exactly is the pacemaker doing for my heart that my heart cannot do on it's own?

When you feel better with the pacemaker than without, the questions don't matter a whole lot, but when you don't feel better, it behooves you ask all the questions you can think of, to study all the test reports until you understand them, and when doctors can't or won't give answers that make sense, go somewhere else.

TraceyE does bring up an excellant point, i.e, how often doctora assume a heart rate is "normal" when in fact, it isn't good, or sufficient, for a particular patient's desired activity level. I kept telling them and telling them, I couldn't walk up my stairs without having to stop and sit down 4/5 of the way up, and they kept saying "Your EKG is normal and so is a HR of 60."

Keith and TraceyE

by PacedNRunning - 2018-12-20 17:42:16

Keith- I feel your frustration. Sounds like your Pacer was emergent? It’s hard to know if you need it or not at this point. I know you said you don’t have SSS or heart block but what caused them to put it in the first place? I was paced at 60 min at one point and I paced a lot. I think 38% atrial and 48% ventricle. We slowly turned it down based on symptoms and now I’m at 40bpm and I pace 1% atrial but 48% ventrically. So obvious I have a heart block in the AV node bc my ventricles need support. Maybe they can turn yours down lower and see how much you pace. I’m sorry they jumped to put this in. Mine has been giving me lots of trouble for exercise. Still not set right. Sucks! Hopefully soon but I do need my pacer unfortunately. 

Tracey- interesting you say Low heart rate is a early sign of electrical problems. I’ve have had low heart rate for many years. 50’s even when I didn’t exercise. I would get dizzy a lot but I thought everyone did with certain movements. I took a few years off exercise and when I went back after a couple of years my resting was 40’s. Medical always ask if I was a runner etc to which I said yes. But I agree with you I didn’t run that much to have a resting of 40!  It wasn’t until I developed heart block did I start having issues. When my EP first saw me, he said my activity level didn’t match my heart rate. He said I would expect you to be an Olympian with that heart rate. So I find that interesting that doctors don’t have us Monitored at least once a year for those with low resting heart rates. They monitored my low TSH for years until I developed symptoms. But not my heart! So is it unnatural for my low to be set to 40! I pace 1% top which is probably when I sleep and 48% in the bottom. Should it put it back to 45 or 50! When it was there I paced about 24% 

Tiffsturdy/Tracey& Gotrhythym

by Keithwhelpley - 2018-12-20 19:15:05

Thank you everyone for your input regarding my initial post.

I am continuing to question my pacemaker. If studies have shown that as many as 20 percent of people with pacemakers don't need one, what else can I do when there are too many unanswered questions. Tiffsturdy raised a good one that I have combed over and over -- if it wasn't SSS or heart block, what was the reason for the pacemaker. I know why. Unfortunately, most doctors don't allow you to go there. According to three blood tests done over the course of my hospital stay, I was near depleated of magnesium, which presents in the exact way that my heart was acting that time in the emergency room. Add to that add betablocker to the picture and you have a very erratic heart rate. Some hospitals immediately use magnesium IVs for any heart releated issue because it is so important to heart function and electroconductivity. Magnesium replenishment answers so many questions and determines with it is and what it is not.

More questions: why wasn't my electrophysiologist able to trigger a VT, the same as what caused my fainting, during my heart study? The best they could do was trigger a SVT, which doesn't require a PM or ICD. Why was my ejection fraction listed as 35% when it is 45% or higher? The PM dosn't track that. Someone has to enter that data, which wasn't gathered (via echo) during my hospital stay. And coincidentally, a 35% EF is the percentage at which a PM is recommended if not required. Why was the PM tech the one who told me I needed a ICD (apparently they all come with pacemakers) before my doctor had a chance to review and talk to me? Why wasn't I given options for pacemaker and ICD makes and models? And why did a surprised cardiologist say: "He (EP) put a pacemaker in you?" upon my followup?

There are more questions, but you get the idea. If 20% of people with pacemakers don't need them, if there is even one unanswered quesiton, ask it! There also are things that PMs trigger that make it a self-fulfilling prophecy, such as skipped or erratic heart beats or conditions that mimic heart failure -- and conditions that may seem like your heart is dependent on the pacemaker.  My heart has not had the opportunity to beat on its own since my magnesium was restored. I want that under controlled supervision.

I am willing to accept a PM/ICD but tell me, show me, what it's there for.