Bumpy Roads--should I change my vacation plans?

Depends

by Penguin - 2023-01-31 15:31:53

Hi Mad Hatter,  

It would be a great shame to miss a trip on your bucket list and that you are clearly looking forward to.  Flying may be a compromise to keep in your back pocket in case you can't resolve the issue but I'd like to think that a solution could be found! 

If the symptoms are caused by a setting - you mention CLS (the rate response setting) in your question and I'm guessing this is the culprit - you could request that the clinic try various adjustments between now and the trip to see if you can get the issue resolved.

Alternatively you could try turning CLS off if you can manage without it? I didn't notice chronotropic incompetence (CI) on your bio - but may have missed it.  CI is quite common in SSS and means that your heart struggles to adjust it's rate upwards appropriately when you exercise.  Rate response is the treatment which pacemakers use to help with this and CLS is the RR setting that Biotronik use as you probably know. 

It would be really helpful if someone with knowledge of Biotronik PMs replied to you, as they will know better than me how easy it may be to resolve the issue if this is the problem.

Best Wishes

The first link seems full of good info

by Gemita - 2023-01-31 17:02:24

Hello Mad Hatter,

Personally, I don’t think you should alter your plans at all, that would be giving in far too easily and in any event you have a goal to get those settings finely adjusted by the summer.  Setting targets will help you to achieve your goals.  The trip to Wrangell-St. Elias National Park, McCarthy, the old Kennicott mine, and the Root Glacier, sounds exciting and I wish I could join you.

I have found the following Pacemaker Club links by searching the general web.  Member Inga (Golden_Snitch) who doesn’t seem to post anymore, had good knowledge regarding the CLS.  Anyway, hope you can find something of interest in the three links I have provided, see particularly first link, some really good info there.  You will need to copy and paste links into your main browser to open:-

https://www.pacemakerclub.com/message/24427/stopping-in

https://www.pacemakerclub.com/message/30455/accelerometer-issues-in-vehicle

https://www.pacemakerclub.com/message/13278/is-respiratory-rate-sensor-important

Bumpy Roads

by AgentX86 - 2023-01-31 17:29:08

If you can put up with the raised heart rate, go with it. I wouldn't miss the chance. You can ask your doctor but it doesn't seem like a big deal to me.

Ah ha! - those links are spot on !

by Penguin - 2023-01-31 17:36:25

Mad Hatter, 

You may have the accelerometer and CLS turned on, or perhaps just the accelerometer. 

You need to go back to your clinic and ask them about this. 

Those links that Gemita has posted contain the answers you are looking for and explain what may be happening. 

Gemita you are a star! 

DDD-R, not DDD-CLS

by Mad Hatter - 2023-01-31 19:01:30

So I went back and looked at my medical records and my initial settings were DDD-CLS, but they were changed in November to DDD-R.  So apparently I do not currently have CLS on, but I'm not sure what the R means--maybe that's the accelerometer?  The pm tech at that time told me it would "follow my heart rate up with activity."  All I know is I was having significant light-headedness with the CLS setting on rising from a position with my head down and this was lessened but did not completely go away with the R setting.  Running was not affected by either setting as I am able to quickly go up to 160 bpm and stay there throughout runs up to 10K.  But maybe the tradeoff is bumpy road syndrome?

By the way, I'm 34% RA paced, 1% RV.  My EP thinks most of the pacing is happening at night so do I even need the R or the CLS?  The EP also suggested increasing the lower rate (currently set at 50) as an option.

Setting

by Lavender - 2023-01-31 20:08:02

Mine is set to DDD. My lower rate is 60.
I would not cancel the trip but would see what the EP says and ask if it can be temporarily turned off with maybe a trial run of that before the trip.

I read this online:

The DDD mode will control bradycardia and provide AV synchrony, but will not provide rate adaptation in patients with chronotropic incompetence.
The DDDR mode will control bradycardia, maintain AV synchrony, and provide far rate adaptation in the presence of chronotropic incompetence.  The DDDR mode is preferable in most patients since it is capable of providing both AV synchrony and rate response (except those with chronic supraventricular arrhythmias).

Rate-responsive pacemakers use several technologies to determine the optimal heart rate, but two are especially useful:

An activity sensor detects body movement. The more active you are, the faster the pacemaker will pace your heart within the range of heart rates that your provider sets.

A breathing sensor measures your breathing (respiratory rate). Since you're likely being more active the faster you’re breathing, the pacemaker will pace faster within the pre-set range.

Either technology allows rate-responsive pacemakers to mimic the normal, moment-to-moment changes in heart rate that would happen with a normal heart rhythm.

No harm in trying to increase lower rate limit

by Gemita - 2023-02-01 03:41:53

Mad Hatter, yes the R signifies Rate Response and should be active (turned on) if it is showing on your records, but you need to check with your clinic since my records showed an R following my modes of pacing AAIR<=>DDDR, but rate response was not ON when checked.  Perhaps it had been set ON initially and was turned OFF at some stage.  They should perhaps "issue" revised pacemaker data every time they make a change, or at least tell us about the changes made so we can keep our records updated.  

Your final para Mad Hatter:  “do I even need Rate Response (or CLS) turned ON” is a good question and I would suggest the answer is possibly NO if I have understood your comments correctly, especially if you don't have chronotropic incompetence.  I see you are only falling below 50 bpm it appears when at rest?  During daily activities you appear to be able to naturally increase your own heart rate although clearly if your heart rate gets close to your Lower Rate Limit during the day, you won't be feeling that well I suspect.  It would also depend on what other settings work with your Rate Response or CLS and these may need to be adjusted too if Rate Response or CLS is turned OFF.  Further treadmill testing would be helpful Mad Hatter to see what is happening during exertion.

Like you, not sure whether there will be clear benefits in raising your Lower Rate Limit of 50 bpm since your % RA pacing is only 34% and as you say, this is mainly pacing while at rest (sleeping)?  When you are active during the day, your own heart is more than able to increase heart rate without assistance it seems.  However no harm in trying to raise the lower rate limit, in case you ever need pacing support during the day. 

By the way, my Lower Rate Limit setting is 70 bpm.  I am paced almost 100% in the right atrium at this rate.  I respond well to the higher setting.  When my heart rate falls below 60 bpm it triggers arrhythmias and I don't feel well.  I also had vasovagal syncope/pausing/severe bradycardia as an indication for pacing.  I have ventricular and atrial arrhythmias, both triggered by falling heart rates.

I'd go

by Tracey_E - 2023-02-01 08:29:10

Ask your doctor about temporarily adjusting the settings for your trip. No way would Iet bumpy roads stop me from making that trip!!! Worst case, I'd go anyway. But that's just me, not much would keep me from making a bucket list drive like that. 

Information on Pacemaker Print Outs

by Penguin - 2023-02-01 16:35:06

Hi again, 

DDD-R pacing means that the pacemaker is programmed to DDD mode (this is the dual chamber pacing mode that Biotronik use).  The R means rate response.  Clearly CLS (which you had programmed previously) meant that the type of rate response being used was CLS.  My best guess is that the R means that rate response is now via the accelerometer. 

If this is the case CLS 'should' have been turned off because CLS and the accelerometer should not need to be used together. Check with your clinic that CLS is definitely turned off. 

A. Pacing Mainly at Night -  This is usually because your atrial rate is set at a h/rate which you need to achieve during the day but which may be higher than you need at night time.  E.g. Mine is set at 60 bpm and because my heart beats around this rate or higher during the day I get less pacing during the day.  The PM kicks in if my h/rate falls below 60 bpm.

However at night my heart rate regularly falls well below 60 bpm and although some of these heart rates may be normal for me at night (e.g. around 50bpm) the pacemaker doesn't recognise this and still paces me a great deal at night, because it has been programmed to do so. 

It is possible to have your night time rate adjusted on some pacemakers so that it adjusts to a lower rate at night to allow for lower night time heart rates which may be normal for you. You could ask about this, but be aware that if you have pauses a lower heart rate setting at night might make longer pauses more likely because these may elongate with lower heart rates. If you suffer with pauses this might not be a great option.   

Do I need Rate Response at all?  -  Possibly not. However, if your heart rate is getting to 160 with exercise beware that the Biotronik's top rate (with rate response turned on) is around this rate.  Therefore you may be getting to 160 with the assistance of rate response...or not! I don't know.

The only way to tell for sure is by requesting an exercise test with rate response turned off.  If your h/rate gets to 160 bpm or above your max tracking rate consistently without assistance and rises appropriately to rates which are normal for you when you exercise - you don't need rate response.  

Raising the Atrial Pacing Rate - If they raise this rate to 60 bpm you will receive more a.pacing at night for sure and most likely during the day too if your daytime resting h/rate is around 50 bpm and your night time rates fall below 50 bpm. 

Hope that helps a bit. 

Additional thought - Do you have any AV node conduction issues? If not keep an eye on that v.pacing % - currently 1%. 

All DDD pacemakers cause unnecessary v.pacing unless they are programmed appropriately. I'm told that Biotronik have a DDD-ADI setting which prevents unnecessary v.pacing. I'd ask about this setting. 

 At 1% v.pacing there is no recognised risk. Unnecessary v.pacing gets risky above 40%.  However, a 1% v.pacing stat can rise as your pacing journey continues when using a DDD setting. 

No need to worry, just be aware and ask about the possibility of programming a preventative setting.  

You all are amazing!

by Mad Hatter - 2023-02-01 17:17:41

You answered my initial question and much more!  I am inclined to think I don't need rate response and I expressed this to the PM tech at my initial device check in August.  She told me all the PM was doing was keeping my heartrate above 50 which was clearly wrong as the CLS was later turned off in favor of the R.  I have never had an issue while running, either prior to the PM (I ran a 10K trail run over mountainous terrain six weeks prior to getting the PM) or after with the CLS on (10K road race in October) or after it was switched to rate response (5 mile trail run in November).  My pace was around 160 bpm in all three races.  But I may need my lower rate increased.  My PM does have a night setting if a difference is needed between night and day.  I have an appointment in March and I plan to discuss all of the above with my new EP who seems much more approachable and open to work with me until we get it right.

Thank you so much for the great information!

Night setting

by AgentX86 - 2023-02-01 18:19:07

I would think that if youneed a night setting that you'd also need RR.  If your SI node were functioning, the lower setting would be fine regardless of day/night. Again, it's just my thinking out loud but if you didn't have CI, there would be no reason to raise the minimum during the day.  The heart would do it without help or the baseline for both would be the same. Interesting.

V. Pacing Suppression - Biotronik

by Penguin - 2023-02-02 04:36:31

This link explains the v.pacing suppression pacing mode for Biotronik. Not sure my description was terribly good! 

https://www.cardiocases.com/en/pacingdefibrillation/specificities/pm-pacing-modes/biotronik/pacing-modes-specific-biotronik

Thanks Penguin

by Mad Hatter - 2023-02-02 12:00:21

I found some excellent information in the link you provided.  Rather than continue this thread I think I'll start a new one for future reference so others may find it.