Micra causing heavy legs/arm?

Is the Micra fit for the task?

by Gemita - 2024-10-14 06:28:25

ABDNDAMO, I am so sorry you are still suffering from your symptoms.  Because you have several conditions, it is hard to pinpoint the exact cause for your heavy legs/arm?  However we may not be able to change overnight a falling ejection fraction, enlarged chambers with reduced pumping capacity, diseased veins, or your condition of ARVC, but we can perhaps change those settings immediately while you wait for a better treatment plan for your complex health conditions?

From your past medical history, I see that you have had a blockage of a large vein in the chest called the Superior Vena Cava.  I don’t know if this has been treated adequately and whether this is the main cause for your continuing symptoms?  In the very least you need an urgent assessment.

I see also that you have a mild left chamber cardiomyopathy and a reduced ejection fraction.  You have ARVC (Arrhythmogenic right ventricular cardiomyopathy) for which you have received an S-ICD to help protect you from a sudden cardiac event.

Clearly there is a lot going on in addition to your rhythm disturbances and Micra pacemaker settings.

Looking at your history, it does seem to me that you need a pacing system that can help you to pace as close to your own natural electrical system as is possible and I am not sure whether the Micra pacemaker is fit for the task longer term.  However because you have so much going on, I am unclear whether your team would ever consider doing more invasive surgery like implanting a traditional biventricular pacing system.

What would I do if you haven’t already done so:

Seek that second opinion urgently.  You should not have to tolerate this level of pain and difficulty.

Ask for a Micra specialist technician to be present at any appointment to try to get your settings finely tuned to suit you.  35 bpm lower rate seems far too low.  You could perhaps ask about raising this to at least 50-60 bpm again, to see if this might help.

In view of your ARVC, arrhythmias and heart block, you could respectfully ask whether a CRT device would be an option to better suit your needs at some stage in the future?  Although CRT is perhaps a rare treatment option for your condition, to get your pacing to as close as nature intended, might help you. 

I see you are pacing in VDD mode that synchronizes the atrium and ventricle.  I see VDD mode can be programmed into a dual-chamber pacemaker, or it can be used with a single-chamber device.  Your device may require multiple reprogramming to maximize AV sequential pacing.

I really hope this time you can be helped and that your symptoms will ease quickly.

Waking up feeling zero energy, heavy arms, legs doesn't sound like a PM-caused issue

by crustyg - 2024-10-14 06:50:24

In your shoes I would be discussing my symptoms with my Primary Care Physician, with a view to looking for post-infection complications unrelated to my device.

There's a clear link in time between your PM settings having been changed, and your symptoms becoming constant which argues against that: ask for a 2-3day Holter to see if you're being over- or under-paced at night as a possible cause.

But my guess is that your symptoms aren't caused by your device.

Agree

by piglet22 - 2024-10-14 07:55:29

What Gemita and crustyg have said makes sense. You should be getting help and support ASAP.

You've mentioned ectopics. Have these been diagnosed?

I hope you are doing some basic monitoring of heart rate etc., with a home oximeter and BP monitor, just to make sure the fundamentals are right.

Certainly, a base rate of 35 BPM is about half or what a normal setting is. For many, a base rate of 35 BPM would be a reason to be paced. I would be feeling very poorly at that rate.

An update

by Abdndamo - 2024-10-27 09:06:31

Im fed up. I've pleaded with cardiology to reverse me and they are adamant it's not the device, without having me in. I didn't realise I had posted Sept 23, the majority of symptoms went or were greatly reduced after a Medtronic engineer visit in October 2023, albeit I still had off days. 

Right now it's daily. Worst of it is headaches and neck pain but my legs and arms are very heavy and weak. More so my right side.

In 2023 Aug-Sept I went to ENT, Gastro and Neurology and they all gave me a clean bill of health. My symptoms included neck pain and tingling in my leg and right arm. This went after several changes to my Pacemaker.

But my local cardiology team are not reflecting on the past, they won't consider it. They are focused on the pacing value of 3.1%. 

I've left a message for my device nurse who is on holiday. Sent several emails to my consultant secretary, who is on holiday. My consultant is on holiday and the device team are ignoring my plead for help and refuse to budge.  

I feel knackered. I'm trying the brave face but October has been a write off. I've struggled at in person events. I am loosing it with my kids. The micra pacemaker is clearly setup to cause me pacemaker syndrome or equivalent but no one has a plan to help me proactively and I feel that I'm going to have to go down the route of A&E, potentially to be discharged as non life threatening, albeit the impact to my health is considerable and tipped me over into the 5/6 out of 10.

I don't feel breathless, but I wake shattered, legs tingling, neck tight, limbs week.

I've had a holter and have been told to wait 3 weeks but I have no faith this will identify anything.

Til next time.