Lightheadedness/wonky feeling - constant

Hello to this group - this is my first posting. 

I recieved my Medtronic PM May 20 so I am almost 4 months post-surgery.  I have an Azure dual lead for second degree heart block.  I am not on any heart medications. Overall I have recovered great and am doing well. I am super active so I have had adjustments to allow me to workout as I like. 

My issue is that I CONSTANTLY feel like I have a full head... like I am in a cloud. I would explain it as just feeling wonky (slighly unsteady) all the time. It's so hard to explain to the doctors and I KNOW it is from the PM. (not dehydrated, blood pressure is good, no meds). Here is the rub - day 2 the nurse made some adjustment because I was feeling this way. Presto - gone. Then another device person at 90 days changed some settings and I am back to feeling like crap. I went back in - adjusted again...specifically put my ADL back to where it was at 120. Felt good for a few hours then back to yuk.   Is it possible the ADL can kick out or change on it's own? Has any got any advice on any settings or modes to consider?


3 Comments

"....like I am in a cloud...."

by sgmfish - 2024-09-15 21:49:56

To me that sounds like your heart is beating too fast for the current need.....sort of like hyperventilating (but this is only a guess....I don't know that much).

P.S. I do know that it can take many, many months to get all the PM parameters "just right".

Rate Response settings and in particular ADL (activities of daily living) rate

by Gemita - 2024-09-16 03:51:01

Hello Rosie, thank you for your post.   As sgmfish says, it can take time to get our settings adjusted to suit our needs.  Rate Response settings are particularly difficult to fine tune and we need to be patient.  Your question: is it possible the ADL can kick out or change on it's own?  Has anyone got any advice on any settings or modes to consider?  

Yes, ADL rates can change on their own if Optimization is set ON. Additionally, you could ask what your maximum tracking rate/upper rate limit is, to make sure this is set high enough to suit your level of activity?​

But first, I would respectfully ask if you could have your settings returned to exactly how the nurse programmed them and left them on Day 2 before you had them changed at Day 90, if this is at all possible?  They may have changed them for a reason like a change in your heart condition, so you may need to respectfully negotiate changing them back to Day 2 settings levels?  

All Rate Response settings, including ADL can be difficult to fine tune.  I have a Medtronic and my ADL Rate is set at 95bpm, with Optimization turned ON.  I have been advised by an experienced Medtronic Pacemaker Club member that to make my pacemaker more responsive, my ADL rate might need to be closer to 115 bpm, with optimization turned OFF, with the ADL Setpoint manually set by the technician to suit my personal needs.  I can give you more info by private message if you need it, but first I would go back to your clinic and ask to have your Day 2 settings completely restored, or to ask whether you could work with a device technician/manufacturer rep to fine tune your settings until your symptoms are relieved? 

If your symptoms do not improve with restoring Rate Response settings to Day 2 levels, you could respectfully ask for all your settings to be carefully checked again, or to look for any rhythm disturbances either pacemaker mediated or caused by your own heart;  or to identify a change in your heart condition (heart block) which might require further settings adjustments?    

I understand you feel your symptoms are Settings related, but even so, you could also have a few general blood checks done, to be absolutely sure?  Please remember that having a pacemaker is a journey - our heart and other health conditions never stay the same from one day to the next, do they?  Our settings clearly need to be adjusted from time to time to keep up with any changes in our health condition.  It is therefore for us to report any new symptoms promptly that may need treating which is exactly what you are doing so successfully.  

Lightheadedness

by piglet22 - 2024-09-16 04:40:04

I can relate to that woolly sensation.

Mine was always associated with interferences that reduced my apparent heart rate and dropped my blood pressure. Similar to pre-pacemacker symptoms.

This was corrected with Bisoprolol, a beta blocker.

Do you check your blood pressure?

BP monitors are good at indicating arrhythmias in a home situation 

The only PM setting that was changed, ineffective, was an increase in base rate from 60 to 70 BPM 

You know you're wired when...

Jerry & The Pacemakers is your favorite band.

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It is just over 10 years since a dual lead device was implanted for complete heart block. It has worked perfectly and I have traveled well near two million miles internationally since then.