New pacemaker/New to forum

Hi everyone,

I got a pacemaker 6 days ago after being diagnosed with Autonomic Nervous System Dysfunction affecting my cardiovascular system along with many other systems of my body.  My heart rate was pretty consistently in the low 30s and over the past few months I've had multiple passing out episodes and ICU admissions.

I have to say I have not felt this well in a very long time.  My energy level has increased dramatically and it may sound weird, but it's like I have an almost euphoric feeling.  I received a 2 lead Biotronik pacemaker and they opted to also leave in the loop recorder that was placed a few months ago.

I just wanted to say "hi" and ask for any advice, tips, etc. that any of you with more experience might be able to share.

Thanks!

Scott


10 Comments

Hi Scott

by AgentX86 - 2022-11-07 00:06:47

Welcome to the club.  Too bad you had to even look for us.

You're not alone, though not in the majority, with the feeling of euphoria.  I had the same thing.  By the time they got me to my room (they held me overnight because I was then dependent) I was ready to run a marathon (I don't run).

You sound like you're doing fine.  If you have questions, let us know and stick around.  The more the merrier.

Thanks

by ScottMc73 - 2022-11-07 00:35:40

Thank you Agentx.  Yeah, I think I can chalk up the feeling great to my newly gained energy.  Appreciate the kind words!

Scott

Good morning Scott and welcome

by Gemita - 2022-11-07 04:04:20

Yes my team also left my loop recorder in place (Reveal Link monitor) at the time of my pacemaker implant because it provided additional valuable information on my arrhythmias.  

I too have some autonomic dysfunction due to another condition (Ehlers Danlos) and although my pacemaker cannot fix everything, it is helping me to feel better by providing a steady, reliable, higher heart rate.  I feel my blood circulation has vastly improved too.  I was constantly feeling cold with a falling, pausing heart rate and wore layers of clothing even in summer.

You sound as though your pacemaker has already made a huge difference and this is a very good sign that your pacemaker is working well for you.  Autonomic dysfunction is not easy to fix as you will know because it affects so many systems and not everything can be helped by a pacemaker.  My blood pressure for example can still suddenly fall, particularly during an arrhythmia and a pacemaker cannot stop this as it can stop a fall in my heart rate.  Overall though my pacemaker has improved my quality of life and I couldn't be without it now.

It is very early days for you.  It is important to keep an eye on your wound for any signs of infection, although some redness, bruising and swelling may be normal for a few weeks as we heal.  Watch for any oozing coming from the wound or worsening pain, increasing inflammation or swelling and report this quickly.  Hopefully you were sent home with wound care instructions and what to avoid for the first six weeks to protect your wound from opening or your leads from moving out of place?  At the same time we still need to keep the pacemaker side arm gently moving to minimize risk of frozen shoulder or shoulder stiffness.

I hope you continue to do well and remember we are always here if you need help.

Thanks Gemita

by ScottMc73 - 2022-11-07 11:15:59

Thank you for your response!

Yes, the Dysautonomia is a nightmare to deal with.  I live in the South but am always way too cold or way too hot.  My blood pressure does fluctuate drastically, but I'm on clonodine now for that which has helped to regulate it. There are GI issues and other things unrelated to pacemakers that go along with this illness.

I am on antibiotics still, and was given good instructions for aftercare.  My EP is also a Dysautonomia expert so I feel like I'm in good hands.

I appreciate your response!

Scott

Smile

by Gotrhythm - 2022-11-07 13:03:35

Had to smile when I read your post. I felt so euphoric for about a week after getting my pacemaker that I asked what special drugs I had been given! 

I have SSS with no heart disease to complicate the picture. All I had been "given" was a regular heartbeat courtesy of a pacemaker.

Gotrhythm

by ScottMc73 - 2022-11-07 19:20:42

Haha.  Yes, I think it must just be the fact that blood is circulating normally now.  Feels great!  Also feels great not to find myself injured on the ground all the time from passing out.

Thanks for your comment!

Scott

Hi Scott!

by Lavender - 2022-11-07 22:27:39

I'm impressed by your positivity even though you're dealing with such complex medical issues. Attitude is the key to staying focused and  successful in recovery. 
 

I am so happy that you have a knowledgeable EP team surrounding you. My CRT-P device energized me as well. I have heart block and was fainting for six months before anyone realized it was my heart fading in and out. 
 

Thanks for posting! Welcome aboard!

Welcome!

by MinimeJer05 - 2022-11-08 10:37:25

Welcome to the club Scott!

Sounds like this all happening for the better and that's great!! It's not often people come on the forums to remind us how AWESOME these pacemakers can be for us and our lives and it is certainly nice to hear your story.

Take care

Jer

welcome!

by Tracey_E - 2022-11-08 16:35:13

Isn't it amazing how different a normal heart rate can feel?! I too felt euphoric for a while after, like I'd been mainlining coffee. Glad you found us! 

Howdy!

by Meliseo - 2022-11-11 03:04:59

Hi Scott,

Welcome to the club! I joined a few months ago after also developing a form of dysautonomia that caused me to wake up in the middle of the night and pass out. I've never fainted before this year, and my partner had to wake up a few times to the sound of me collapsing around the house. I conked my noggin pretty good a couple of times and have had more hospital trips than I'd like since this all started.

I developed quite a lot of anxiety about this, knowing my heart was pausing during these fainting spells, so it's nice to see you taking it all in stride! I debated for a long time over whether or not to get a pacemaker, but when I had mine implanted, I too felt so much better!

It's only been a few months, but I haven't passed out again since I received the pacemaker. I feel a lot safer and more confident that I'm not going to take another tumble. I'm hoping it'll be just as effective for you! Best wishes!

(^__^)

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