Too high?

who knows

by Tracey_E - 2017-08-06 16:11:32

What's too high for one person can be just right for another, but yes a higher base rate can make us feel jittery and racy at first. I'd give it a few days to get used to it before making any judgments. 

Palps tho?

by WiredandTired - 2017-08-06 16:13:09

The racing seems to be waning, but the palpitations are a little scary. Can that happen?

Not any help, but curious

by HookemHorns - 2017-08-06 16:26:41

Hi.  Can you describe your symptoms at each?  I'm curious why they started it so low at 50, or if they just like to see if you can survive with minimal assistance?

Symptoms

by WiredandTired - 2017-08-06 16:49:53

Yes.  I think they started it so low because the average age of people with sss are 70...lol.  Actually I don't really know. But at 50 I was exhausted. I almost did nothing but sleep the entire day.  I had pressure in my chest and in my throat.

At 60 with the rate response now turned on, I've been able to walk 8 miles a day but still had occasional throat pressure and occasional shortness of breath doing things like walking across a parking lot. Inappropriate shortness of breath, in other words. By 1 or 2 in the afternoon I was completely devoid of energy.

Now at 70, with my voltage turned down. I no longer have any throat pressure... I'm no longer feeling like I don't have any energy,... but I felt like I drank tons of coffee and I'm getting heart palpitations, mostly when I'm trying to exercise.

It may be notable to tell you also that at the interrogation they caught double counting on July 10th but said it's probably a sensitivity issue and they mucked with that a little bit also.

If it's not one symptom it's another. The minute I get rid of one horrible symptom, two different ones are added. I do everything I can to keep myself healthy but it seems like I can't get where I need to be. Within the first mile of my walk today I had to stop because of palpitations.  Then I ugly-cried for 45 minutes because it's 6 months now and I'm all set with the BS.

10 wks post pm.

Settings

by Grateful Heart - 2017-08-07 11:08:00

Sounds like you're getting there.  It can take a few tries.  They like to give it some time before they change the settings again.  Give your heart a chance to adjust.

But after a few weeks if it still feels the same then go back.  It may indeed be a sensitivity setting issue. 

I started at 60 for a resting rate and didn't feel good so they raised it to 70 also.  I needed a few tweaks as time went on.....very common.

I know it's frustrating....don't give up.  It will be worth it.

Grateful Heart

Thanks

by WiredandTired - 2017-08-07 11:34:33

I have an appointment with the device clinic tomorrow at 4.

Chill

by Gotrhythm - 2017-08-07 15:30:09

I understand how frustrating it can be to just want to get on with your life but feel unable to because you just can't get a handle on heart issues.

Still, changing your pacemaker settings every few days because you're bothered by palpitations isn't likely to help. Better to give it a couple of weeks at least so that (1) your heart has time to adjust and (1) you have time to observe exactly when and under what conditions the palpitations occur.

You say that you're getting used to the higher heart rate, but not whether you feel better and can do more at the higher rate. You mentioned being able to walk 8 miles, but being tired the next day. In the last 10 weeks, how often have you walked 8 miles? Is is possible that being a little out of condition accounts for the tiredness?

The word "Palpitations" refers to a subjective feeling, not something specific that your heart is doing wrong. It might be useful to learn exactly what your heart is doing when you feel the palpitations. Is the heart actually is beating out of rhythm or is it just suddenly speeding up?

I find the better I understand what is happening, the less anxious and more confident I feel. And the sad truth is that there's not much a pacemaker can do to alleviate most causes of palpitations, but the more you let them upset you, the more palpitations you will experience.

So chill. Take some time off from trying to fix your heart. The good news is, palpitions or not, your pacemaker is not going to let your heart stop, so go to a movie, pet your dog, or just smell the flowers. 

Chill?

by WiredandTired - 2017-08-07 16:35:40

I certainly don't feel that I need to "chill".   I'm suffering and was told to call back if I wasnt feeling better in a few days. The only thing better is that the throat pressure is gone, most likely from turning the voltage down ( Per My Device Tech) and energy level.  I walk every morning 6-8 miles and have even before surgery. For years.  Now I cant get up to two without heart pause feelings since it was raised and other changes.  I'm more short of breath walking across a room. It's the settings.  And I don't change them every few days.  I do whatever my EP and team tells me to do.  Dont tell me to pet my dog or go to a movie, I do that plenty and it's condescending.  I'm not sure how you meant to come across but your delivery could use a little work. 

Base rate

by IAN MC - 2017-08-08 15:52:19

Hi Thumbcoast       I'm curious, what adjustments have they made at your latest appt at the device clinic ?    Have they considered 65 as your base rate ? I have found that even a 5 bpm adjustment either way can make  a big difference to my fatigue / energy levels.

I hope they have worked it out ; keep at them till they do ! 

Ian

Thanks Ian

by WiredandTired - 2017-08-08 21:28:24

They changed it to 65 a couple hours ago, and lowered the sensitivity on my RR (if I understood her right) to help me not get so fatigued and short of breath doing normal things like taking a shower.  She also thinks I'm having early beats I'm going to do some research on that.  It's been a long 6 months. I'm mentally and physically spent. I hope this works. Thank you!

hopeful.

by The real Patch - 2017-08-09 17:01:33

I'm sitting here enjoying another round of palpitations while trying to respond...who ever said they were subjective should pull their head out of their derriere and chill, so I know how disruptive they can be to deal with whether benign or not. You are taking the right approach and working with your medical team to get things squared away so ignore the naysayers. Hopefully this latest round of tuning will get you on track. Hang in...

Thanx Patch

by WiredandTired - 2017-08-09 19:44:57

This latest adjustment is helping quite a lot. We'll see how it goes over the next couple of weeks.

hey thumb coast

by Chantellerose - 2017-08-10 10:18:51

hey hun, think we have the same device (boston scientific)- i had palpitations too and had the rate response turned off and that helped loads. not sure if you have had it turned off before but maybe try that next time your there.  my surgeon actually told me that havign a pacemaker may not stop any of my symptoms (palpitations etc) so i feel your pain! sounds like you need a holiday first 6 months are draining!!

good luck lovely x

Fellow BSer...lol

by WiredandTired - 2017-08-10 10:23:41

I've actually had a couple people tell me that. But I exercise everyday and won't that make it hard for me to do that with it off?  When I first came home from the hospital they had me programmed at 50 with no RR and I was exhausted. Now whether that was the base rate or the rate response function, I have no idea. But they turned the RR on and raised me up several times and now I'm back down to 65 with it on. They think I'm having some early beats, as well. They also tweaked  some sensitivity threshold  setting . This has been the best setting so far but I'm still waiting for that magical setting that makes me feel like my old self again. Does that even exist?!  Thanks for the advice!