Almost scary how much difference settings can make...where can I learn more?

understanding settings

by Tracey_E - 2016-10-27 14:40:17

Most of us have learned like you just did, when something went wrong and we asked a lot of questions. I have a rep and doctor who both get that I like to understand things so they are great about answering my questions. Online research is good but keep in mind places like this are all amateurs.

CLS is probably the best rate response out there, but it's only helpful if 1) you need it and 2) it's set up correctly for you. If you do a search, it comes up fairly often here. Do you know what caused your episodes? If your sinus node works well, you don't need CLS, it can compete with your heart trying to do its thing. 

The treadmill is a great tool for adjusting settings but not many doctors do it. Most of them don't have many patients who are young and active so we tend to stump them.

Once the settings are tweaked so that you can do what you want to do, they shouldn't need to mess with it again unless new problems crup up. 

If your new doctor is confused by you, can you get a new one? Preferably one familiar with the Biotronik devices. Some of them, like mine, even bring in the company reps to do the programming. So, my doctor reviews my settings and knows what's going on, but the rep (who you had on the phone) is the one I see. Sometimes we get people here trying to decide which device they want. My reply is always get the one your doctor knows inside and out since he''ll be the one programming it. 

Programming

by Cabg Patch - 2016-10-27 15:33:42

I was involved in industrial robotics for quite a number of years. We designed, built and serviced automation equipment and had some incredible engineers on my team who came up with some incredible products.

More than once, a customer would contact us to report an unexpected problem with the equipment. We convened a design review team consisting of the engineers who designed the equipment as well as others not directly involved. I lost track of the times the engineers who designed the equipment insisted the problem the customer reported was an impossibility. Some of the engineers would get indignant insisting they knew their euipment better than anyone and this was impossible and someone must be sabataging their equipment, yet every time we were able to duplicate the issue the customer reported. It usually proved to be a simple program change that was supposed to do one thing but had a trickle down effect. Changing one setting can have unexpected negative effect on other features.

What's my point...even people who develop a product can be mislead at the interaction. Our job isn't to tell the technicians what settings to change on our equipment, but rather what the issues are we are dealing with so they can figure out what changes need be implemented to optimise performance for our needs. It's like your car, you tell the mechanic what it's doing and he's responsible for determining the corrective action to resolve the problem.

It is great to have a rudimentary understanding of our devices but focus more on just enjoying life and let them do their jobs. That's why we pay them big bucks...

Here's what you do..

by donr - 2016-10-27 15:45:30

.... to learn more about CLS.  We no longer have a PMC search functioin, so go to Google & search on "Pacemaker Club Inga CLS," followed by a search on "Pacemaker Club CLS."  You will get hundreds of hits, all out of the PMC archives.

Who was Inga, you may well ask?  She is a German woman who knows more about CLS than not only the average bear (Sorry, Inga, I couldn't resist the connection), but most Cardios.  She has written many more treatises on CLS in here than you can count.  She has one & uderstands it thoroughly.

Go read her bio sketch - her screen name is golden_snitch.

Donr

regarding programming

by green18 - 2016-10-27 15:48:49

Thanks for the google search recommendation...that was gold!  I did find the technical manual online and that was pretty interesting to read.  I am certainly not obsessing about it, but they literally were giving me options as far as turning CLS on or off and whether to turn on or off the rate response, as well as the various settings.  In other words, they were giving me options and I just feel like a better understanding going in would help me make informed choices.  They can talk to me at the moment but it is a lot of information to process in a short period of time.

I found a post from someone years ago that describe the exact symptoms I was having with CLS.  They would do fine speed walking but as soon as they tried to run it was as if the pacemaker drove the heart rate down almost.  They would have to stop, walk...rinse and repeat...and could never get the thing to do anything but hamper vigorous exercise.  Turning that off seems to have removed a barrier.  I am just interested in learning more because I hate to abandon the technology if there is a chance it could provide additional support and not hamper my natural ability to exercise.  If the rate response alone without CLS lets me run I am probably just going to leave it alone for a while.  

I was having some difficulty on exertion prior to getting the PM.  The PM was only to stop syncope but if there is hope it can assist on the exertion I really do want to find the secret sauce.  Jogging is one of my best sources of relaxing and having time with my thoughts and it has been really hard on the mind (and body) being unable to do it.

Settings

by BillH - 2016-10-27 20:54:57

While some doctors might resist it you do have a right to get a copy of your settings.

I don't remember if the Biotronic has this feature or if it was in another brand.

But look in the manual to see if there is an option to make a recordiong of the rate response calculation. With that it is activated for a period of time. Then you exercise and later the recording is played back.

Some brands can then feed this back to a simulator to see what would happen with different settings.

You're gonna get this...

by donr - 2016-10-27 23:58:01

...in two parts.  Part I is a list of all the comments w/ CLS in title.  Below:

You can have CLS turned offwxman2016-06-02 14:24:38Active

Re: CLSJackw2016-06-02 14:23:42Active

What a CLS doesGotrhythm2016-06-02 14:23:50Active

Have them check you CLSGigi2000572016-06-02 14:23:07Active

Biotronik Cylos with CLSgolden_snitch2016-06-02 14:17:46Active

What is CLS?FzyMtnMan2016-06-02 14:14:44Active

Donr

Here's ..

by donr - 2016-10-28 00:01:21

...part II.  A list of the posts  w/ CLS in the title.

Comparing Vitalio to CLSCardiovert2016-04-30 05:04:39Active

Dual-sensor VS Biotronik CLS for biking, etc.AbNormative2016-02-27 04:02:30Active

For the CLS usersgolden_snitch2015-04-24 02:04:26Active

Is CLS OK with a healthy SA node?Marinade2014-05-30 12:05:13Active

To those with CLS switched on...golden_snitch2014-05-01 02:05:32Active

Biotronik CLS info pls!BPM2014-03-10 06:03:43Active

Donr

Rate Response

by Hoser - 2016-10-28 13:37:20

I have a St. Jude device, and I was experiencing the same thing as you. My exercise took me to a point where my heart rate could not keep up. I had to do the same thing as you which was slow down the run and let everything catch up.

I have some 'before' heart rate/pace graphs that show my heart rate doing things completely opposite of what the pace I was running demanded. After doing some research, I requested that my EP turn Rate Response on to help with this issue. As I understood it, that would allow the pacemaker to sense the need for a higher heart rate and ramp up accordingly.

The difference is like night and day, and I have some 'after' graphs that show the heart rate climbing and falling in direct correlation to the pace I am running, which is what I needed.

I am not familiar with CLS, but I think that the rate response change is the one you were looking for..

Pacemaker settings

by blessedgrammy - 2016-10-29 00:05:47

After my pacemaker was first programmed, i felt extremely bad.  Any form of activity at all left me completely exhausted. I tried to tell my cardiologist but he would accuse me of having anxiety.  Finally, after seeing his physician's assistant while he was gone, she heard me and was able to communicate to him that he should pursue it further.  He spent an hour reviewing and checking my Pacemaker settings.  I have a Boston Scientific Accolade MRI DR model L311.  Mine was the first of it's kind that my Cardiologist put in. So I think it was a learning curve for him,  as well as me.  He changed the settings to 100% pacing in the atrial lead and I am feeling back to normal.  He said the previous setting allowed my natural beat and it wasn't beating fast enough so the pacer was coming in too.  I have Sick Sinus Rythmn so my regular beat is all out of whack.  I too would like to know more about my settings and  how the settings work.  It is hard to have something in your body that can affect how you feel and not know anything about how it works.  I wish the Boston Scientific Rep. offered seminars on it.  I am in my 50's and still active so it feels great to have my life back!