How long did it take...

For your settings on the pm to be set?

I received mine last May at the 1st check in Sept they "turned on" the breathing sensor to let my top rate go higher. But I don't think it is working correctly or it has a governor on it.

When I exercise or other "extra curicular" activities, I get so out of breath very quickly - faster than before the pm. I took my pulse the last time and it was only 100, it should have been on the 140 - 160 range in my opinion.

I hope this makes sense to some of you.

My next check is in 13 days. So do I go in an demand a higher upper level? Is ther something else either I or the doctor should be doing?

What are the normal upper/lower settings? (100% paced)

Am I just to live with it?

10 Comments

Rate Response?

by SMITTY - 2013-02-26 01:02:02

Hello Besser.

I think you may be talking about what most of know as the rate response. If that is correct the following may help. This is to increase our heart rate as we in increase our physical activity. To check if mine is own I do this. I sit quietly for 10 or 15 minutes and count a resting heart rate, I then make a fist and beat on my chest at the bottom of my ribs on the left side. My PM is under my collar bone on the left side. I do not hit had enough to be uncomfortable, just enough to jar my upper body. I do this for 5 or 10 minutes and then count my heart rate. If my rate response is working as I think it should my heart rate will increase. If I have doubts or questions I ask my dr. I don't take my questions to the nurse/technicians unless I have total confidence in the answers I get from them.

Above all you do not have to "just live with it."

Good luck,

Smitty

Correction

by SMITTY - 2013-02-26 01:02:38

Besser,

Old Doofus can't count. The thumping your chest with your fist should be for 20 to 30 seconds to see if the rate response is working. He thinks all other comments are accurate.

Good lukc

Doofus

settings

by Tracey_E - 2013-02-26 02:02:53

Why did you get the pm? Because the breath sensor sounds like part of rate response, which is atrial pacing for sinus dysfunction, but being fully paced and what you are describing sounds more like ventricular pacing which is for av block.

Definitely don't just live with it! Any time the settings aren't right, call and ask to be seen, don't wait for the next appointment. If they've tried a few times and can't get it right, ask to get on the treadmill so they can watch what your heart does on exertion.

There is no "normal" upper/lower setting. What works for you is the right setting. A common is 60/120. Mine is 50/175. Not common, but it works for me. As for how long it took, for me it's been more fluid. I'll be good for a few years, then things will start to change so they'll tweak. It's been almost 20 years, I've lost track of all the changes I've had over the years but right now I feel terrific.

I have more to say but will wait to hear why you got the pm. My answer is different if you have av block or sinus problems. :)

Rate Response

by ebfox - 2013-02-26 03:02:05

Besser,

A good pacer tech will work with you to get RR set right. The best way is for you to get on a treadmill and exercise while the tech adjusts the settings. I have heard other stories about people running up the stairs, around the parking lot, etc. It will make a big difference, no doubt.

EB

Took 6 months for mine

by SaraTB - 2013-02-26 04:02:21

The 'breath sensor" you refer to sounds like the minute ventilation function that I have in my Boston Scientific PM. It works separately from the accelerometer part of the pM, and is designed to react to your breathing rate.

In my case, I had mine on for a while, then had it switched off, because it didn't seem appropriate to my specific condition, which is 3rd degree heart block, after AV node damage. As my atria are working in tune with my brain's signals, I only need the PM to tell the ventricles what the atria are doing, and to keep up the same pace. So, I had RR turned off in the PM, and after some discussion, had minute ventilation turned off. In fact, I have noticed no difference afterwards, one way or another, but everyone's different.

Anyway, when I got my first PM (didn't have the MV), it took about 6 months to get the settings to where I needed them to be. My Dr. was very patient and perfectly happy to keep on tweaking. It probably took about 2 months for the second one to be right - initially it had the same settings as the old one, but with newer and different technology, it needed a bit of adjustment.

Hope this helps.

6-8 months

by fishfighter - 2013-02-27 03:02:31

But I had other problems with my heart. I'm paced 100% and I'm set at 60/130. I have a CRT-D. My problem is my heart rate almost never gets above 120 BPM.

Rate response

by golden_snitch - 2013-02-27 04:02:14

Hi!

Usually, you combine a breathing sensor (minute ventilation sensor) with an accelerometer (movement sensor). That is because while the accelerometer is the perfect sensor for fast responses, for instance when you start running, the minute ventilation is what you need more for the endurance part; it doesn't react very fast, but it makes sure that, if you run, bike, swim etc. for a while, the heart rate doesn't drop. With the accelerometer only, you might have problems when you do an exercise that does not involve upper body movement. In that case, the minute ventilation sensor senses through your breathing that you are indeed exercising, and adjusts the rate accordingly. So, the combination of these two sensors is important. If your doctor switched on the minute ventilation sensor only - that is possible -, you'll end up with a rather slow rate response. So, that's something you should check.

I agree with Tracey, to me it sounds like you're pacing 100% in the ventricle which then leads to the question, if you really need the rate response. If your sinus node is functioning normally, you don't need it.

The upper rate limit is important, too. If you have a complete heart block, this rate defines the point at which the pacemaker will go into a 2:1 block --> only every second impulse coming from the atria will be passed on to the ventricles, and therefore your heart rate drops significantly. So, for example, when your upper rate limit is 140bpm, you end up with 70bpm when the pacer goes into 2:1 block. I don't know what your upper limit is, but it could very well be that it was programmed too low, somewhere between 120-140bpm.

To sum up, three questions for your cardio at the next appointment:
1. Do you really need the rate response or is your sinus node functioning normally?
2. If you need the rate response, what's the upper rate limit programmed at the moment, and can it be increased?
3. Does the pacer work with accelerometer + minute ventilation or is only one of these sensors switched on?

Inga

It takes a while...

by Many Blessings - 2013-02-27 09:02:32

Hi Besser,

It takes a while for them to get you set right. There's really no set answer to how long, it just depends.

I'm 100% paced as well. I'm set at 80-150 as far as rate goes. As for the rate response, it just depends on what works best for you, not what they say is supposed to work. I've found that to be true for me.

I'm super active, but when they set my rate response for an active person, it doesn't work for me at all. I feel like total $#%%. I can't walk across the room without feeling tired and out of breath, and can't make it up stairs without feeling that, and dizzy, tingly, and my legs and arms feeling very heavy and like they won't move. It's weird. I know others have that and other symptoms.

They can do wonders with chaning your rate response, or shutting it off if that's a possibility for you.

Keep working with your PM tech to see what works for you. Be patient, since it does take a while.

Best wishes!

Level of activity

by golden_snitch - 2013-02-27 10:02:37

@ Tammy: Did they set your "level of activity" high or very high? Because if they did that, the rate response will be slow. And your symptoms sound a bit like it's not increasing your heart rate appropriatly (tired legs and breathlessness is something I get when the RR is not fast enough).
The logic is: A very active person is well trained, and when you're well trained and exercise, your heart rate increases slowly. In people who are not active, the rate response is much faster as they are not well trained. Not all cardios know of this pacemaker rate response logic. Some think that a high level of activity means that you'll get a quick rate response, but it really is the other way around.

Inga

Shirley

by Tracey_E - 2013-02-28 08:02:15

Most of us learned what we know when we've had problems :) In my case, my problem is congenital and rare, outside of a cardiologist's office most dr's haven't seen it so I had to get good at explaining it. If you make it clear to your dr that you want to understand, most of them will explain. I've been a regular in a cardiologist's office for over 40 years now, paced for almost 20, that's a lot of time to pick up on things. You'll get there!

My settings have needed changed over the years. I wouldn't say constantly, more like every few years things changed and the pm had to be tweaked to accommodate.

Do you have access to an arm bike or rower? They might let you get some aerobic exercise while not using the hamstring.

You know you're wired when...

You have a $50,000 chest.

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