Breathlessness

Rate response?

by PacedNRunning - 2023-07-01 03:36:31

Do you have rate response on? I'm a runner and that made me feel 90 years old at 46. Active people need some adjustments in order to exercise. Rate Response increases your HR with movements like walking, running etc. With complete heart block you probably only need bottom lead pacing. . I would also ask about that and TARP. 

Settings

by Penguin - 2023-07-01 06:04:35

Hi Pippy, 

That does sound very odd. I'm in the UK too and usually settings adjustments are offered by pacing clinics when you express concerns regarding lifestyle unless the EP consultant has to be involved.

Your bio doesn't specify the brand / type of pacemaker that you have or the setting for it.  Usually for complete heart block the 'overall' setting is DDD. This should be specified in your discharge papers.  If it says DDD(R) the 'R' means that Rate Response is already programmed (as mentioned by PacedNRunning in the comments above.)

Rate response can be adjusted to provide a faster response to exercise demands. However, walking up stairs is a difficult one. Often rate response doesn't get the message that it needs to kick in until you've reached the top. 

Walking down the road may not trigger rate response either if you are taking it carefully.  That's completely understandable as 3 wks post implant most people are cautious. 

Some info on Rate response: 

Pacemakers have either an accelerometer (responds to movement) or something called minute ventilation (responds to breathing demands) or both. Both are preferred by athletes and cyclists in particular because accelerometers tend to detect upper body movements rather than leg movements.  If you let us know the type of pacemaker (brand / model) that you have, we can provide more information on the type of RR sensor you may have.

I really don't understand why your pacing clinic cannot adjust your settings though.  Perhaps it's too early as Angry Sparrow suggests.  I'd try again once you have more information from us.

I hope this helps a little bit. 

Thanks for your replies

by PippyD - 2023-07-01 07:33:17

Thanks, everyone.  Your replies are helpful as I was feeling a bit down.  I'm guessing it is early days yet and it may just be that the clinic don't want to change my settings yet.  

I have a St Jude Medical pm, set to DDD, 50bpm.

Thanks!

You may have to drive the process !

by IAN MC - 2023-07-01 08:23:00

In a perfect world the pacemaker clinic would have been very interested to know  :-

i )  if the implant was successful in terms of the PM functioning OK

ii )  if the pacemaker is allowing you, the patient,  to maintain a normal lifestyle.

It may be very early days  but it does seem that their only concern so far has been the first.

As a very active marathon runnner , I encountered exactly the same problem and struggled to exercise post-implant. Eventually the cardiologist admitted that he only had limited experience of implanting pacemakers in very active people .

I requested that they look at my settings while I ran on a treadmill and after much persuasion they agreed to do this and involved a technician from the pacemaker company. The resulting PM adjustments were , for me, a massive turning point and I found that I could resume my active lifestyle.

You may eventually find that you have to use all your powers of persuasion. For example , I had to involve my GP and I also sent E-mails to the PM clinic outlining my dissatisfaction with the status-quo !

Best of luck

Ian   ( also in the UK )

Breathlessness

by Gemita - 2023-07-01 08:46:40

Following on from the excellent suggestions so far, we have to remember also that there are many possible causes for breathlessness, not necessarily pacemaker related, although I see you have had a range of checks already.   You might wish to see you GP for further blood checks (anaemia/infection/inflammation, for example), if the breathlessness continues.

The implant procedure itself may have caused trauma and triggered some unwanted rhythm disturbances and rhythm disturbances can certainly cause breathlessness at rest and particularly “on exertion”.   Many of us experience unwanted electrical disturbances when being paced for the first time but it usually improves without too much in the way of intervention.

In my experience clinics do not wish to go in too quickly to change anything too soon after implant because the heart is still healing and getting used to pacing and this can take anything from six-eight weeks to around 3 months. 

If however your symptoms are difficult to tolerate and only you will know what you can and cannot tolerate, then please speak to your doctors or seek emergency help.  You could ask whether your symptoms might improve with an increase in your lower rate setting from 50 bpm to say 60 bpm.  This adjustment could be made immediately?

I am in the UK also.  I am sure you will get back to what you love very soon.  I hope for the very best

St Jude / Abbott

by Penguin - 2023-07-01 09:34:11

Hi again, 

DDD means that you are being paced in both chambers and no 'R' on the end means that Rate Response is not switched on. 

50 bpm (obviously) means that the pacemaker won't let your heart rate fall below 50 bpm and will operate between 50 bpm and your upper rate limit (usually around 130 bpm although this is determined by your age and fitness level).  

Rate response will allow the pacemaker to increase your heart rate above your upper rate limit (often set to around 150 bpm) when exercising and will allow a fast / medium or slow response when you begin exercising.

You have an accelerometer on your pacemaker. There is no minute ventilation. 

I agree with both Gemita that 50 bpm is a touch on the low side particularly if your heart doesn't increase it's rate naturally, but it depends on what you were used to prior to pacing.

St Jude are now called Abbott and there are lots of settings for Rate Response once you are ready to ask for settings changes. Ian's advice seems v.pertinent to me. 

Hi 👋🏼

by Lavender - 2023-07-01 09:39:24

It's early in the game. Your low rate does seem set a bit low. My starting rate was 70. It was later adjusted down to 60 once the leads had grown more firmly attached to the heart. 
 

I also have AV and left bundle branch block. My CRT-P is in DDD mode. 
 

Great! I feel happier now.

by PippyD - 2023-07-01 13:59:52

I feel better informed.  Going to give myself a few more weeks to adjust to the pm.  Then if I still have problems, I'll ask to try a change of settings.  Thanks to you all for your help.

DDD

by AgentX86 - 2023-07-01 23:10:24

If your pacemaker is in 'DDD' mode (rather than 'DDDR'), your rate response is not turned on, so there isn't much that can be done with settings. Most of the settings modify RR features.