CLS and PVC / VES, trying to get some sleep!

Hi everybody,

At the end of May I had a Biotronik Eluna 8 DT-R with two leads implanted after an hybrid ablation because of persistent afib. The ablation was successful in stopping afib but unfortunately it became clear I have sick sinus syndrome and normal sinus rhythm did not return.

In the last few month I have been recovering from surgery. My minimum heart rate was set to 60 en the maximum at 120, CLS was set to 'normal'.

Unfortunately I now have a lot of PVC / VES and before my check up had trouble climbing the stairs, walking up hill or cycling at a normal speed. I was out of breath all of the time. My maximum heart rate was about 88 when climbing the stairs or cycling. But my resting heart rate was about 80 (due to all the PVC's?).

So during my last check up (4 days ago) my minimum heart has been set tot 80, trying to prevent the PVC's and CLS has been made more sensitive. I feel great during the day. I can climb stairs, walk faster and look healthier. So far so good. I still have a lot of PVC's though and my resting heart rate is between 90 and 105 when I lie in bed. The trouble is, I can't sleep with this high heart rate and that is wearing me out!

Is there someone out there that has experienced something similar and had it sorted out?

11 Comments

Allowing the heart to heal

by oldearthworm - 2015-08-31 03:08:35

I finally read the meaning of PVC ..the last sentence .. The heart is a muscle and , I think, can heal ..
Time ?
....during sleep time...
How ?
... cut the heart beats to 60 ?
Maybe a more variable PM .. or a fancier one ..
This from a dreamer, an expert I am not ..

Dreamer

by Hartje5 - 2015-08-31 04:08:12

Thanks for your comment. A fancier PM . The Eluna 8 is pretty new and fancy :-), maybe too fancy? I know I have to give it time. But it's hard to not panic and keep faith sometimes.

If I write strange sentences it's because I'm Dutch :-).

CLS

by golden_snitch - 2015-08-31 04:08:12

Hi!

I have a Biotronik Evia with CLS activated. Am in touch with a Biotronik regularly because of CLS and have thereby already learned a lot about this sensor.

CLS resets itself completely whenever you change any pacemaker setting. That means, it kind of forgets everything it had learned so far about you and your level activity and starts all over again. And unfortunately with CLS, this starting all over again usually causes lots of tachycardia in the first couple of days. So, if I were you I'd give it a couple of days more and see if the resting heart rate stays that high. What always helps me is to move a lot, that way after a couple of days the rate is in a normal range again.

Also, to me it sounds a bit irrational to change the base rate from 60 straight to 80 AND change the sensitivity. Usually it's better to change one setting at a time. And do not make big changes like from 60 to 80; 70 might have been better for a first change. So, if it doesn't get better, let them either change the sensitivity back to where it was before or have the base rate changed to 70. Changing the CLS sensitivity alone already gives you a higher rate, therefore there is no need to change sensitivity and base rate at the same time.

Unfortunately, with CLS activated you cannot have a nighttime rate programmed. Most pacemaker have that feature, yours has it too, but not when CLS is active (only when the motion sensor alone is active or no sensor at all).

Good luck!

Upper rate

by Hartje5 - 2015-08-31 05:08:10

I totally agree with you that it would have been better when only one setting had been changed. Now I don't know which one is causing the problem. Today I went for a long walk and the odd thing is that my heart rate was at 80 sometimes while walking. Walking up the stairs causes a rise in heart rate after a some delay, so thats improvement.

I'm going to give it a couple of more days, I have an appointment in 10 days. Then the technician can check if the number of PVC's have declined. If not, I'll suggest changing the base rate to 70.

Another question, I'm going to go start a training program in two weeks do you think it is a good idea to raise the maximum heart rate to 160 at my next appointment so I can benefit more from the training. It would mean changing two parameters at one visit again...

Thank you so much for charing your knowledge!

CLS

by golden_snitch - 2015-08-31 05:08:15

Hi!

My heart rate is sometimes around 80-90 when walking, too, though it's always at 160 in less than a minute when I run.

I don't know what your training programme includes, but an upper sensor rate limit of 120 sounds pretty low, if you want to exercise a little harder. I had mine at 140 at first, now 160. I think, I like the 160 better.

CLS is really tricky and often unpredictable. For instance, when I run I always get the 160 bpm (my max sensor rate), when I ride my bike it's much slower. Whenever I do not exercise for several days, the response gets much more aggressive, so that just walking the stairs leads to 160. And sometimes the rate just drops while exercising (usually from 160 to 140, it used to drop even to 120 but we were able to stop that). I'm not always happy with CLS. For daily life it's better than the sensors I had before, but when running all it does is 160 (or dropping to 140), but there is hardly any heart rate variation. It does not seem to differentiate between slow and fast running. That's sometimes frustrating. But as long as it keeps the rate stable, I'm okay. I just don't like the sudden rate drops while running.

Good luck!

Training program, running

by Hartje5 - 2015-08-31 07:08:51

The training program is a cardiac rehabilitation program from the university medical centre I've had my surgery. It includes cycling, walking, running, swimming and a diet, psychology and breathing techniques module.

I would love to run again, have not been able to do that for four years due to very high heart rates (240+) when exercising.

I've read somewhere that the sudden drop in heart rate while running is caused by the pacemaker going into safety mode. The thought being: there must be something wrong if the heart rate is at 160 for more than x amount of time. Don't know if that is really what causes it.

Base rate dropped

by Hartje5 - 2015-09-01 03:09:46

Hurray, the high base rate has gone down like you predicted! Moving a lot is the key. It's good to know what to expect when they change te settings, too bad nobody told me this on forehand. Would have saved me a lot of stress.

Today I've received al the paperwork of my rehabilitation program. I have a stress test (on a bike, VO2 max) before my appointment with the pacemaker technician, so my heart rate will still be 120 max. Well, I'll see how that goes...

Rate drop

by golden_snitch - 2015-09-01 05:09:29

Yes, it's a kind of safety feature - and you can't switch it off completely. We have done some optimization, increasing the amount of time, that I'm allowed to hit the max. sensor rate, to the absolute maximum. So far, so good. But since it wasn't the case that the heart rate always dropped, for instance when I ran a certain distance - sometimes I ran 10 K with a drop, sometimes without -, I'm not sure, yet, if it really has stopped dropping. I need to test the new setting a little longer, I guess.

If I were you, I'd at least have the upper rate increased to 140 (160 is the max with this sensor), 120 sounds a bit slow for all these activities.

Yay!

by golden_snitch - 2015-09-01 06:09:58

That's great!

Let me know how you did on the bike. I once did a stress test on a bike shortly after the CLS had been re-programmed - at that time I had the feeling that it resets itself and had asked to do the test before the change of settings, but the docs said no, it doesn't reset -, and could not bring my heart rate any higher than 130 (at 125 W). But when I walked slowly 20 metres to the examination room, it shot up to 160 bpm. CLS really does respond very differently to different kinds of activity...

All the best!

Stress test / heart rate won't go up.

by Hartje5 - 2015-09-10 10:09:36

Yesterday I've had the stress test on the bike. I could not get my heart rate up higher than 108 (max CLS is 120). When I started the test my heart rate was 98. No wonder I'm out of breath a lot!

Afterwards I was told I was in quite good shape though. I don't know how they could figure that out. Maybe trough the watts I've cycled? Haven't asked.

Tomorrow I'm going to the pacemaker technician again. I'll discuss raising the maximum heart rate to 160 and increasing the sensitivity. In previous visits they've already raised my base rate to 80 (too many PVC's), made the AV-delay longer (less ventriculair pacing) and increased the sensitivity.

It seems CLS is not plug and play for me :-(. I hope they'll find the solution...

AV-delay and maximum heart rate

by Hartje5 - 2015-09-11 04:09:46

Today I've had my visit with the pacemaker technician. He set my minimum heart rate to 70, but he could not raise my maximum heart rate any higher than 130 because of the increased AV-delay they've programmed. It could lead to serious ventricular tachycardie he told me.

I'm a bit in shock now. How am I ever going to swim, run, cycle and live a full life with a maximum heart rate of 130?

Has anyone else experienced something similar?


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