Exercise Intolerance/Shortness of Breath/Palpitations

You have had a very complicated road to get here

by crustyg - 2020-01-17 04:26:28

Recalling your previous posts there's been a lot happening to you - and your history is much more complex than SSS=>PM.

Sadly, I don't think you're going to find answers here.  There are plenty of reasons why you might be feeling terrible despite the fix of a PM for your SSS.  You need to have a proper conversation with your medical team - not just your EP doc, but someone who is a cardiologist and can look at the bigger picture.

Pardon me for being so blunt, but there may also be a significant anxiety/stress element to your problems - and that does *not* mean that I think that they aren't real or that they don't matter.  If I'd been through what you have suffered I would think every heart beat that I could feel might be my last one.

HR of 120bpm in paced A-V sync shouldn't feel like palpitations (but this can vary from person to person).  Everyone on this forum can feel their heart beating when they focus on it, but it's something that we try to ignore, for the most part.  Just like breathing.

Assuming that you have a normal echo, have a decent LVEF percentage, have normal blood sats (so no pulmonary shunting from a PE), your BP is normal and you're not dosed to the eyeballs with beta-blockers and anti-hypertensives, you ought to be able to start exercising at a more realistic level - assuming that this doesn't bring on pain.  If you can't, only you can decide if this is because you are (rightly) terrified of pushing a bit more, or if you are just incapable of it.

My recommendation - get back to your hospital medical team soon, and explain what is going on, get them to review the blood work (virus titres, FBC, LFTs, renal panel) and your cardiovascular data.  If your numbers from exercise tests are normal then either they are missing something or there is something going in that reduces your ability to exercise at home, unsupervised compared with how your body can work when you are in the safe surroundings of the hospital/clinic.

Best wishes.

Agreed!

by arent80 - 2020-01-17 10:04:29

I have to agree that all of this has happened very fast and caused quite a bit of trauma. It's amazing how something like this can affect you mentally, physically and emotionally. I'm impressed that you stated how one can behave differently alone versus in a hospital/medical setting. I say this because it applies to me. I swear I'm so calm with the doctor. Nothing really happens to my heart there but when I'm unsupervised I feel like any little thing may push me over the edge. It's quite the phenomenon. I will continue to search for answers. 

One other item I'd like to mention is that I believe I'm being paced inadequately. My base setting is 50BPM. Yesterday afternoon around 4pm I'm sitting around and I'm already at 50BPM. I'm 5'11 around 235lbs. I have an Apple Watch that I know isn't the gold standard when it comes to heart rate but it's pretty close. Last year my heart rate was in the high 70's and 80's. I think it is very well possible that my SOB and other issues could be linked to the fact that my HR at times (mostly at rest/sleep) is just too slow. Maybe my base should be set at 65-75BPM? I've told this to the EP and they want me to use my own heart as much as I can so they didn't want to change the base setting. But if I'm SYMPTOMATIC which I can tell in my body when I get to 60 and below then WHY NOT? I'll never understand why doctors don't listen to patients. Is it their ego or fear of a lawsuit. Either way I'm done suffering and want answers with solutions!! Thanks for the response @crustyg! Appreciate your time and input. 

Keep Pushing The Doctors

by Stan Da Man - 2020-01-17 10:43:28

Something clearly isn't sitting well with you despite 'normal' test results for your condition. I would keep pushing the doctors saying you feel unwell, something isn't right and exercise is next to impossible. No one should have to suffer in silence although it's made to feel that way sometimes. I'm going through something similar - hope it all works out for you.  

What about ....

by Pacer2019 - 2020-01-17 11:04:00

Asking to do some cardio rehab ? Here there is a facility that's just like a gym .... you wear a heart monitor and exercise while people monitor you. 

it's about the safest environment you can be in ....I assume it also records data where what's going on could be seen. 
 

Thank you!

by arent80 - 2020-01-17 12:49:16

I'll keep pushing the docs and I'll ask about the Cardio Rehab. I truly appreciate the comments! I'll keep everyone posted. Thanks again!!

Update!

by arent80 - 2020-01-22 16:21:54

CLS was turned off and it fixed the tachycardia episodes. I also got the EP to set my base at 60BPM. I still can't shake the SOB! I have it daily and it comes and goes. Worse with intentional exercise. I did a Pulmonary Function Test yesterday and I see another Cardiologist Friday. I sure hope I didn't develop heart failure. It's all I keep thinking about. Anyhow once I have all results I'll post a new update. Hope everyone is well!

Might need still higher base rate.

by Gotrhythm - 2020-01-23 14:09:28

If your normal heart rate always used to be 70, that might be what's needed now. The professionals like to set the base rate as low as possible in order to conserve battery. But saving battery isn't more important than feeling the best you can.

Until I developed SSS my resting heartrate had always, always, always been 72. When the base rate was set at 60 then 65, the resting rate was always exactly the same as the base rate. But when the base rate was raised to 70, not only did I feel good--like "myself" finally--but my resting hearrtrate became 72.

I'm pacemaker dependent now, so where those two beats came from I don't know. But there you are. All I know is that everything, every single thing, walking, talking, thinking, getting up in the morning, climbing stairs, drivingin heavy traffic became easier when my base rate was 70.

Here's the truth about pacemaker settings. There are no "right" or "normal" settings. There's only right for you.

Getting the settings right for you is a matter of trial and error. The best they can do is try a setting and see how you feel.

If it takes several tries to get the settings right, it doesn't mean anything is wrong--with you or with your pacemaker.

Some people aren't particularly sensitive to their settings and some people, like me and possibly you, are.

Realize that they don't know--they can't possibly know--how you feel. It behooves you to learn as much as you can about settings and be willing to suggest setting changes.

Might need still higher base rate

by arent80 - 2020-01-23 15:51:04

Thank you so much for your input! It's funny that you mentioned how your base rate would be whatever the low side was on the PM. When mine was at 50 it would be 5pm and I would be at 50 while sitting on the sofa. Now that it's 60 it fluctuates between 60-63. So what you say makes total sense. I appreciate it and I agree. I still think I have a little more fine tuning to go but I'll be back to my old self here pretty soon! Again thanks for your reply :-)