Just A Tweak

Being a newbie who stalked the forum before my implantation a few weeks ago, I have been hesitant to post my experience wondering if my personal story had any merit in helping anyone else. However, if even my experience could shed some small light on anyone else’s concerns, it could be of some value.

I am a 77-year-old male, with serious bradycardia and had an ablation for AF about two years ago. I had a Biotronik Edora 8 DR-T implanted. The procedure was unremarkable and after an overnight in the hospital I went home. Then some very uncomfortable things began to happen. PAC’s, tightness in throat, and a few incidences of my rate accelerating well beyond what the activity would seem to call for. In general, it felt that the device was being aggressive and randomly reacting beyond need. I also was sleeping much lighter than before with a rate that was 16 to 18 BPM higher than what I was used to. Not being a medical person (understanding surfing Google does not qualify me), I weathered it out until my follow up ten days after the procedure.

At the appointment, the device was running fine, all indications and reading were quite nominal. After a discussion with the technicians and doctor about all the parameter changes that could be done, we decided to be conservative and only tweak the CLS setting and not introduce more than one variable. We went from medium to low sensitivity.

From that moment to this writing, my whole experience has changed. PAC’s have gone to sparse, gone are the aggressive accelerations, throat tightness episodes have disappeared, rate seems relative to activity, and I am sleeping much better with a rate that is 10 to 12 BPM higher than pre-procedure.

In summary, just a CLS tweak to my individual situation took what was becoming a disconcerting and negative experience to a positive one.


7 Comments

Great news!

by AgentX86 - 2022-09-16 11:33:01

Of course you're experience helps us help others. You're a textbook case that things might not be perfect day one but with a little patience and some tweaking to pacemaker settings that a pacemaker can make turn your life around. Many of us have been beating that drum for years but it may seem to others here that we're the outliers. Most get their pacemaker and go on with their lives. Few with these success stories ever think of searching for help.

It's good to have you here, even though you didn't have any interest in becoming a member.

Also tweaked

by Tinawired - 2022-09-16 11:58:06

Yes, this will definitely help someone else that might be "stalking" pre-implant also. I had the same situation of my settings being off. My pre-pacemaker resting heart rate was in the 40s because I was a runner. They set it too high initially and I was having trouble sleeping. Glad you're sleeping better and not having the issues you were at first.

CLS adjustments seem to be exquisitely sensitive

by crustyg - 2022-09-16 17:30:28

I'm starting to gain the impression that the CLS settings are very sensitive indeed - small adjustments make a big difference to the PM's behaviour.  It takes time and experience to know the likely effect of adjusting parameter <x> by one notch - does it change the outcome a lot or hardly at all?  The manufacturer manuals don't give any real indication.

You only have to look at novices learning to drive: they tend to oversteer the car until they realise that only small adjustments to the steering wheel are needed, and some cars even less.  Car vendors do actually state lock-to-lock turns (usually about 3.5 for a family car, perhaps 2.5 for a 'sports' car - go-karts much less) and this gives some idea of the sensitivity of the control.  Same with aeroplanes - even big commercial jets don't need a lot of control input to change height, direction, take-off rotation etc.

This need for experience of adjusting lots of PMs is why the really smart EP-docs arrange for a vendor rep to attend a PM 'tuning' session.  They are almost the only people who've done this sort of tuning multiple times.

Thanks

by Mandroid - 2022-09-16 20:50:38

Thanks to all who took time to comment. I will continue to use this extremely helpful forum!

I hate acronyms and abbreviations

by Good Dog - 2022-09-17 08:50:32

I was scratching my head and then banging it on the wall trying to figure-out what the heck CLS meant??? I have an interest in learning more and getting tips and suggestions here that can help me. It can be so frustrating when I can't figure-out what certain acronyms and abbreviations stand-for^^*%&%^&^&$#.......that is me cussing! Everyone, especially in the medical field uses them in great abundance. 

Anyway, for those like me that did not/do not know and understand what CLS meant, here it is:

 Closed Loop Stimulation (CLS)

and here is a great explanation (copy and paste as-is in entirety into your Google address bar):

chrome-extension://efaidnbmnnnibpcajpcglclefindmkaj/https://biotronik.cdn.mediamid.com/cdn_bio_doc/bio29485/47480/bio29485.pdf

Happy for you!!

by Rch - 2022-09-17 20:35:22

From what I understand from your post, you are only 10 days out from the pm implant. I'm glad the CLS tweak helped you immensely, so now you can feel and sleep better, save for some post-op pain. That said, over the next few weeks until the leads are fully embedded, you may experience newer symptoms off and on, and so keep a log of all your symptoms and times. Also, I suggest you try to get an after visit summary from your provider so that you can actually see what was reprogrammed and may be post on this site. I personally don't have Biotrinic device or CLS but have comparable rate adaptive devices in Boston Scientic. Nonetheless it's a learning experience for all of us to know what was tweaked on your CLS! Thank you! 

just a tweak

by skigrl3 - 2022-09-17 21:36:09

Thank you for posting. I, too have the biotronik edora DRT-8 for bradycardia. I also had some SVT and VT episodes., Agree about unremarkable procedure. Post procedure, I had dizziness and sob for about 10 days and thought I made an awful mistake for going through with the pm procedure, thinking this is a total disaster.  It got better from that point on, I stuck with it as I have always been athletic. I am back to normal, 4 moths later, albeit the occasional ache, pain or twitch in the area. Inn a few months, I will get back to skiing!  Thank you for sharing your experience, that's what we are all here for and best wishes with your biotronik device;

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