Propranolol & Home Monitor

Hi everyone!

I had an ICD checkup yesterday, and I have a couple questions for you all!

I have Arrhythmogenic Mitral Valve Prolapse (SCA Dec. 2018).

When they interrogated my device, they discovered that I had an episode (arrhythmia) back in September where my ICD started to charge but it was aborted. I've never had a shock before. My EP is concerned about this episode, so she wants to change my medication from Bisoprolol to Propranolol (because it deals better with arrhythmias apparently...?) Does anyone have anything to say about: a) changing medications; b) does anyone have experience with Propranolol?

Also, they want to set me up with a home monitor thingy (Latitude NXT), so they can monitor how the new medication works and make sure I don't experience any other dangerous arrhythmias before my next in-person appointment in 6 months. I've had my device for almost 2 years, and I'm just starting to kinda forget I have it. But I'm concerned this home monitor will remind me about my device every day. Any thoughts on that? Any experience to share about the home monitor?

Thank you so much for your thoughts!


3 Comments

You'll forget about the home monitor in days!

by crustyg - 2020-12-05 17:44:11

I too have Latitude home monitor.  It sits under my bed, and, so I'm told, interrogates my PM every night, and if there's anything worrying to report it sends the information back to base (BostonSci in Belgium for me, I think) and an alert is received by my EP team the next day.

You won't feel anything, hear anything, or see anything - it just works in the background,  If your EP team have set it up this way, you can press the button for a patient-initiated transmission and it kicks off an interrogation immediately (you can watch the flashing lights) and then sends the data off for your EP team to review that day.

Actually it's way too bright for good sleep hygiene: even under my bed the bright green glare was bothering me so I taped a piece of black card over the face (hinged so that I can swing it up and check).  It can connect via a cellphone adaptor (pre-paid for ever) or use your home network (wired Ethernet), and you can take it on holiday with you - although the PSU is a bit heavy and it's not a small device.

Give it about 2 days and you'll forget it's there!

HTH.

 

Propranolol and home monitoring

by Gemita - 2020-12-05 18:07:58

Selective beta-blockers like Bisoprolol mostly affect/target the heart, especially at lower doses.  This means they are generally better tolerated and safer, with fewer side effects than a non-selective beta-blocker like Propranolol.  As a non-selective beta blocker, Propranolol can affect/target different parts of your body, so has the potential for greater side effects than a selective blocker like Bisoprolol.  Having said this Propranolol I was told can be very effective at controlling an arrhythmia, so I feel it is certainly worth trying.  I am still taking Bisoprolol and have tried several different anti arrhythmic meds in the past, like Flecainide and Digoxin.  If Propranolol can help prevent your defibrillator firing by controlling your arrhythmia better than Bisoprolol, then in my opinion it is certainly worth a try, particularly if you get home monitoring and they can watch for any adverse symptoms and adjust dosage quickly if need be.

Home monitor - go for it.  It can be a good additional safety net to help protect you and give your clinic vital information.  You will then be in control and able to send transmissions to your clinic when you need to and you can keep a diary of the dates, times and symptoms present to share with your clinic.  I have had a monitor for many years.  With arrhythmias, I wouldn't be without it.  They will be able to determine how well your medication is working from your regular downloads and catch anything concerning at a very early stage. 

It is wonderful to be in control.  Don’t be afraid of it or view the prospect negatively.  The earlier you can get on top of your rhythm disturbances the faster you can get on with living your life and forget all about your heart and hardware.  Home monitoring is the best way to build up a picture of what your heart is doing on a day to day basis. 

For example my anti arrhythmic med Flecainide was found to be pro arrhythmic for me when my pacemaker team analysed my downloads.  I was able to then quickly stop this med as a direct result of my monitor detecting a problem - a problem which may have taken months to resolve without home monitoring. 

Crustyg has given a good description of how your home monitor will function so I won’t cover the same ground.  I have Medtronic anyway. 

By having a home monitor you will potentially learn quickly about the nature of any significant arrhythmia, like how it starts, highest heart rate, duration, frequency of episodes, how well your medication is working, whether dosage is right for you.  You can speak to your clinic and download an episode whenever you are at your most symptomatic which will give them invaluable immediate information.  Without monitoring I would not be this far ahead in my treatment, so I wish you a happy and very safe journey ahead

 

Propranolol

by JayKay - 2021-03-21 09:22:57

Propranolol is the only beta blocker I've taken and I've  have been on it for 3 months. The first few weeks were tough because I felt dizzy and foggy all the time. After that, those symptoms went away. 

I still occasionally have trouble sleeping,  and excessively sweat when working out (both seem to be known side-effects). Other than that, it's fine.

As for the home monitor, the one I have is clunky and is suppose to be within 10ft of the bed and have an unobstructed line of sight to the ICD. The company that supports the monitor says they will call if they detect something odd or if a couple of nightly transmission are missed. Visually, the monitor disappeared for me. Unfortunately, I'm reminded of the monitor when I have thoughts of traveling.

In general it's fine, I just wish the monitoring technology (size and data access) would catch-up to modern day tech.

 

You know you're wired when...

The mortgage on your device is more than your house.

Member Quotes

My pacemaker has ultimately saved mine and my unborn child’s life for which I am thankful.