Biotronik 2 lead with CLS - requested to have CLR turned off

Those that have read my previous post know that I have had excessive tiredness.

I am a 66 year old, very inactive female with multiple other medical problems.  Three weeks ago I asked the EP to turn off the CLR.  First he could not figure how I knew about it.  He asked "What if I turn it off and you feel worse".  My reply was "I will have you turn it back on."

Now I have been feeling terrible.  Been sleeping 16-20 hours a day, eating 2x day, but much less food.  My depression has raised it's ugly head.

Does anyone think or know if this could be a result of the CLR being turned off?

Thanks.


8 Comments

Many Adjustments

by BillH - 2016-11-25 00:23:44

Based on your comment that the EP had problems turning off the CLS it  would seem that he is not very familar with the Biotronic device. See if he can get Biotronic rep in when he is making adjustments.

Based on a comment in another thread that you are paced 80& in the antrium it appears that your sinus node is not working very well. If it will not increase when you increase activity then you need some kind of activity response from the PM.

I believe that the Biotronic has 2 different ways of doing this. One is using CLS and the other is an accelerometer. It may have a mode that combines them, but I don't know.

In any case there is much more than Turning them ON or OFF. There are often several adjustments (I know for the accelerometer mode) that controls when it starts increase HR and how fast it increase it and how long it take to slow down when not needed.

And there are  many adjustments in a modern PM.

And many PM can be set to make a short recording showing how the rate response is working as you increase activity. In your case walking or going up stairs should be enough.

That helps pin point if that need adjusting. And possible an echo to see if the ventricle is following the atrium activity.

First you need to know you exact diagnoses.

Then ask who the PM is suppose to overcome that problem.

And third is it doing that.

And have other cardiac issues been ruled out. I know from experience that ischeme can cause lots of fatique without angina.

And other cardiac issues can cause these problems.

 

TY BillH

by Cajun Girl - 2016-11-25 01:11:09

I have sick sinus syndrome.  I also have mild mitral valve prolapse which is congenital.

I am not sure what this EP does and does not know.  I had to switch cardiologist when my PCP diagnosed me with SSS.  My old cardiologist was very complaisant when I went to see him and told him what was going on.

The new cardiologist did an EKG than inserted a loop recorder.  4 weeks later I was in the ER with bygemeny, SOB and chest pains.  They admitted me and the next day he came in and said he did not put in PM and he was going to have another cardiologist put one in.  I asked by name if the EP could put it in and he said he would rather this othe cardiologist.

I've only been to the EP one time by recommendation of my PCP.  The EP is also a cardiologist. I asked if he would take over my care and he seemed reluctant to take another cardiologist patient.  My PCP is going to speak with him.

It was the PM clinic that I called the other day who gave me that %.... but she said order for me to have the PM I have to have a cardiologist and the EP was more or less an "electrician".

I don't know what to do or who to call.  All I do is cry and sleep!!

EP

by Good Dog - 2016-11-25 09:22:00

You are on the right track. I think that the previous post (Bill H) misunderstood when you stated that your doc wondered how "you" knew about the CLS. I think that he thought your doc "didn't know about it". In any case, it is good that you are trying different things. 

So yes, you should be seeing an EP. He is the most qualified to get your PM adjusted correctly. As Bill H suggested, the manufacturers Rep would also be a big help in optimizing the settings. They are usually better than the doc's, but I know it may be difficult for you to arrange that.

It is entirely possible that you are caught-up in a vicious cycle with the depression. I say that, because depression will make you tired all the time. Most depressed people just want to sleep. So it may be wise to work on your depression as well as your PM. Talk to your GP about the depression. Don't give-up.

Keep the faith! As long as you continue to work on both issues, you will eventually get it straightened-out. I think that most of us have gone through periods of "feeling not so great". I have gone through some depression and all I wanted to do was lay around and sleep. So I understand. You are not alone. Keep trying and it will all pass. Just be patient and give yourself some time.

I wish you the best!

Sincerely,

David

TY Gooddog

by Cajun Girl - 2016-11-25 16:05:46

The EP did know the CLR was there!  He could not figure out how I knew it was there.

I don't know how to get a factory rep to be at a visit.

I did get to speak with the psychiatrist today.  She was reluctant to do anything about my Meds because of what I told her about the PM.  In the end, she did increase my antidepressant.

I have an appt with the EP in 3 weeks.  I tried to call today to see if there was something sooner, but they were closed.  Will try again Monday.

Thanks for your response.

Good

by Good Dog - 2016-11-25 18:30:46

I am happy for you that you are on the right track. It seems that you are doing everything right so I am confident that if you hang in there, you will come out of this so much better. Just keep at it.

David

CLS

by Jimini - 2016-12-01 14:53:29

What is a CLS and CLR?

I have left bundle branch block and I'm scheduled for a CRT implant on Dec 15th 2016.

Doing my homework.

Not sure if I need the implant.

CL?

by Cajun Girl - 2016-12-01 16:01:55

I know all these initials drive me crazy.  It's an component in a Biotronik pacemaker that correlates your thoughts with the heart rate.

what is a crt?

Biotronik

by cns01120 - 2016-12-11 21:03:43

I have a Biotronik pacemaker and I've gone through TONS of setting options working very closely with my EP due to a complex situation/diagnosis. Eventually we had to go into the password protected settings and contact headquarters in Oregon to do so. I'm pretty well informed about CLS so feel free to contact me if needed. 

Can you tell me some info about your current and past settings and how you felt in each? I have had both CLS and DDDR modes on a Biotronik Entovis. DDDR mode was a nightmare for me. CLS as you know, has the ability to react to changes in your heart tone, autonomic system and potentially stress levels. The device in CLS mode "learns" your body and constantly makes adjustments. 

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