same symptoms as before PM

Hi,

I got my Bitotronic Edora8 DR-T October 2021, due to SSS and AV block with bradytachicardia. Using it 95% according to last check. 52 Male otherwise healthy. Did Cathererism, MRI, Ultrasound and all fine before PM

First few weeks/months I was doing ok, but after my 1st checkup they made a adjustment and from there it went downhill. Experiencing almost the same symptoms as before. SOB, AFIB, Fatigue, can't walk for 300 meters without being tired.

Went 3 times so far to ER and every time PM checks out fine. Anyone has experienced something similar or can point me in a direction, since the Dr here have no clue. the PR from Biotronic knows me by fist name already.

I can't get a hold of EP or got ignored since PM is working as it should.

I'm getting desperate since it affects my daily life and work. I have a appointment with different EP but until mid May.

Let me know if anyone has an idea what could go on.


7 Comments

Don't know

by Old male - 2022-04-09 22:59:07

I first experienced the symptoms you describe which was determined to be caused by Afib.  Heart failure contributed.  Can't say if or why a device adjustment would affect.  Dr. should be able to determine. Good luck. 

Perhaps your Atrial Fibrillation is progressing

by Gemita - 2022-04-10 06:39:40

Your second paragraph may hold one answer:   "First few weeks/months I was doing ok, but after my 1st checkup they made an adjustment and from there it went downhill. Experiencing almost the same symptoms as before. SOB, AFIB, Fatigue, can't walk for 300 meters without being tired".

It would seem an obvious answer, but have you asked your technicians to return your settings to their former values before your first check-up? Hopefully they will know what they changed at your 1st check up.  That is one possibility.

The second possibility perhaps is that your condition (electrical disturbances) for which you required your pacemaker has changed (worsened) and during brief ER visits this is not being picked up.   For example AF can cause me overwhelming shortness of breath and fatigue at times, particularly at high speeds and long term monitoring (external holter) will sometimes be additionally necessary to correlate your symptoms with your heart rhythm irregularity.   If you are not getting answers I would ask about longer term additional monitoring (like a zio patch) to look in more detail at what is happening over a 7-10 day period or longer.  It will pick up even ectopic beats which may not be reported on by your pacemaker, since pacemaker data to be stored and reported on is closely controlled by your doctors.  Anyway, only a few thoughts.  Good luck

"after my 1st checkup they made a adjustment"

by Persephone - 2022-04-10 12:21:23

Hello Farmer - if this adjustment that was made has affected you, can you go back to whoever did it and ask for a reassessment?

You say "PR" of Biotronik - to me this sounds like Public Relations - does your EP not provide access to a Biotronik technician in their PM clinic? If they do not, you should insist upon it - their own personnel may not be adequately trained on this device.

Also, if you do see another EP, do you have enough information to provide to them that they can understand your history?

"Your pacemaker is working fine"

by Gotrhythm - 2022-04-10 15:50:39

"Your pacemaker is working fine" only means that it is working the way it is programmed to.

It doesn't mean that the settings that have been programmed are right for you. And it doesn't mean that your heart is working with the pacemaker the way it should. Something about your condition could have changed which might neccessitate changes to the programming.

Like Persephone, the simple answer would seem to be, if everthing was fine before the adjustment, ask to have the original settings restored.

An EP who won't respond to you "because the pacemaker is working fine" is no good to you. Good to know you have appointment with a different one.

 

Adjustments to pacemaker

by Flo - 2022-04-10 19:54:26

Both times my EPs made an adjustment to my PM I've had to go back and have them change the settings back as I was SOB and heart rate went too high walking across the room.  I had to use the elevador rather than the stairs like normal.  After the change back all was fine again.  Best to you. 

CLS

by PacedNRunning - 2022-04-10 20:14:51

May I suggest turning off CLS. Biotronik has CLS which I've seen jack people up. Maybe it was off and they turned it on. 

CLS

by Persephone - 2022-04-11 22:28:51

I benefit greatly from the CLS setting on my Biotronik device. As opposed to Farmer's diagnoses of both SSS and HB, I was only diagnosed with HB, and CLS was not set to 'on' initially. However, since the CLS was turned on one year later, atrial pacing has been about 30%, in addition to the RV pacing of essentially 100%. Just my experience - maybe I did not get a full diagnosis, or maybe I did. Maybe there was a progression of the arrythmia over the course of that time period. Anyway, CLS helps me function and live fairly normally.

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