Has anyone ever felt this funky strong vibration/pulse feeling out of nowhere?

yep

by Alexander - 2021-10-24 02:16:08

I have an ICD, new to the club, 3 weeks in. I get either spasms or pulses, I feel like they're in my leads or muscles. Don't know really. I told my EP about it, but they've dismissed it as part of the healing process and possibly just spasms.

I've sent reports in and they've received and reported nothing abnormal. I feel like no one knows how we are feeling ultimately except for our ownselves...

Alexander

by Cyborgheart90 - 2021-10-24 12:00:09

Who knows if the feeling in my case was similar too. Like you said, only we know how we feel. I've had other symptoms throughout my healing process and doctors would always look at me like I'm crazy. 

Thumping

by AgentX86 - 2021-10-24 21:48:31

It's possible that it was a bunch of PVCs but they normally show up as skipped beats.  If you have this happen for any period of time, that is long enough that it won't immediately dissappear as soon as you can move, send a transmission right then.  In the morning is too late.  You have to catch it in the act.  PMs don't record everything.

Remember, cardiologists don't often have PMs themselves and, really, have quite healthy hearts.  They only know what they're taught and haven't experienced any of  the weirdness themselves. 

Language is an issue too.  There often aren't words to describe what we're feeling.  At least there aren't words that can comunicate the feelings.  We might all describe the same event differently.  I've often had a lack of words to describe my symptoms.

All that said, no doctor should ever look at you like you had a third eye when you complain about some symptom.  All symptoms mean something, if only that we're crazy. ;-)

AgentX86

by Cyborgheart90 - 2021-10-25 13:28:43

Thank you for your advice!! I'm still new, and after a few months of having my pm I feel like I still have so much to learn.

I've also been confused as to how the home monitor even works, so I'm glad to know the transmission has to be sent at that moment. I'm always unsure as to what these monitors record or don't record.

The correct language for my symptoms has also been very difficult. Often times it's been so hard to explain in the correct words how I feel which I'm sure is what confuses my doctors as well LOL. Not only that, it's what has left me feeling pretty alone and misunderstood at the same time. I'm sure with time I'll get better at this, but these first few months have just been hard, along with the emotional toll this all took on me. Hopefully brighter days are up ahead. :)

Thump

by AgentX86 - 2021-10-25 22:03:50

Your monitor doesn't store anything.  All it is, is a "telephone" to connect you and your manufacturer's computers.  It just sends data.  Your pacemaker does store some information, primarily what your EP decides is important.  There is limited storage in pacemakers so what's stored is prioritized by your EP.  The monitor will send that information in addition to what's happening now (an EKG).

It's not up to you to tell them the "correct words" for what you feel.  There are often no words to accurately describe what you feel. Doctors need to take a vague description of a "feeling" and find a cause.  Too often doctors write people off as a crank too fast.  I've had symptoms written off as my imagination a few times, only to find that not only were they real but serious.  It took a long time for me to come up with a description of the feelings but even then it wasn't taken seriously.  A PA just answered one of them a few weeks ago that the MD was ignoring.