New to group/PM recently implanted

• by inGodsheart
• 2013-03-23 01:03:41
• Checkups & Settings
• 1596 views
• 1 comments

Hi, All!
I'm new to the Pacemaker Club forum. I'm in my 30's and have had a St. Jude dual-chamber PM implanted five weeks ago. I have multiple health conditions, some of which include autoimmune autonomic neuropathy (dysautonomia), myasthenia gravis (MG), tachy-brady syndrome, hyperadrenergic POTS (postural orthostatic tachycardia syndrome), neurocardiogenic syncope. I've had dysautnomia since I was 16 years old.

Because of my myasthenia gravis (which is a neuro-muscular disease causing me to have generalized muscle weakness, double vision, balance impairment), I cannot take beta-blockers.

My cardiologist had to implant my PM on the same side as my intravenous port in my chest because my other side was occluded with an old blood clot.

I've had to have my pacemaker interrogated twice since the implant. The most recent tweak has been to change the base rate to 65 bpm instead of the default setting of 50. The reason for the PM was because of frequent pre-syncope episodes caused by bradycardia.

My question is how long does it usually take to notice a difference "energy-wise" with a base rate change? I'm still measuring my HR to be below this base rate, so I'm concerned a setting is still out-of-whack. The technician noticed when he interrogated it this week that I had pacemaker syndrome because my heart rate response to the artificial pacing was erractic and not synchronized between the two leads, which had caused me to have more shortness of breath and dizziness than usual. He supposedly fixed this issue.

Second question is does anyone else take Ivabradine (procoralan) to help regulate high heart rate? (I have tachy/brady syndrome causing wide swings in heart rate.) This med hasn't been approved by the FDA yet. It's only available in the UK and Canada, but my doctor has recommended it as it acts similarly to a beta-blocker without causing the negative side effects. He wanted me to start this when my base rate was increased to 65.

FYI, I also infuse 2 liters of lactated ringer's fluids a day to help with blood volume expansion, which is needed for orthostatic tolerance (ability to remain upright any length of time without near-fainting). My kidneys have a potassium wasting issue, so the LR has potassium added to each infusion.

Sorry for the length of this post...just trying to give a bit of a background.

Thanks for any help!