Possible Pacer?

Hi everyone. I'm so glad I found this site. Ive been in such a whirlwind of news and possible this and that over the past few weeks, I'm exhausted! I'm 23 and have been diagnosed with Neurocardiogenic I ended up passing out and found out that it was heart rate driven, not b/p drop that did it. They got me taching into the 150s and then within 2 seconds I dropped junctional into the 30s 40s and acclerated junctional and finally back into sinus rhythm. So, theyve started meds which really isn't helping to keep the tachycardia under control and theyve mentioned theyre concerned about the drops into junctional and that perhaps I need a pacemaker t fix both the tachycardia and the drops. I'm absolutely terrified. I work for a cardiologist and sometimes it makes it all the worse because it's simple for them not to sit and explain things, because they know I know book value of the conditions....but again, I'm terrified. The medications aren't really working, I'm still passing out and I'm afraid of still going junctional and what that could lead to. They've put me on driving restriction and this has basically stopped my life over the past few months. Has anyone had any experience with anything like this? I know the general thing people think with pacers is bradycardia and afib...but I don't really fit into any of the molds... Anyone have any ideas? Thank you so much!

3 Comments

thoughts

by Tracey_E - 2008-08-27 01:08:28

I'm not familiar with your condition so I can't comment on it but I have a lot of opinions on pacemakers and personal experience being young and confused, thinking pm's are only for old sick people. I have congenital complete heart block and got my first pm at 27. I also have a secondary condition, chronotopic incompetence, where I'll be cruising along at 120 (or whatever) and suddenly drop to 80 or 90. The pm is programmed to not let that happen so it's not a problem for me at all. That sounds similar to your drops?

random thoughts...

- if they're not explaining things to your satisfaction, make them sit down and tell you! Don't be shy about it. Tell them to pretend you don't work for them and explain it to you from the beginning.

- I procrastinated a good 2 or 3 years past when I should have gotten the pm. I didn't know anyone else my age in the same situation (this was pre-internet!) and I was terrified of the surgery. My decline was so gradual that I didn't realize how bad it was until I felt better. I ended up in emergency surgery one day on the verge of cardiac arrest because my rate hit the 20's. In retrospect, the surgery was so much easier than I expected, I had more energy than I ever had before, and I ended up feeling like I wasted a few years of my life being dizzy and tired all the time when I could have been feeling good.

- drugs have side effects. Will getting the pm get you off the drugs? That would be a big plus for me. Ask them for numbers, like medication can fix you 75%, pm can get you feeling what percentage better?

- you may want to consider an implant site other than the traditional under the collarbone implant. Mine is submammary. More unusual (my surgeon had never done it that way, he pretty much experimented on me, lol) and a bit longer recovery period but I have no lump, no visible scars, no seatbelt issues, no problems carrying backpacks or working out. Even my doctor can't find my pm unless I show him where it is, it's completely buried beneath the breast tissue (posterior, not literally underneath)

- if you have any questions about the surgery itself or living with a pm when you're young and otherwise healthy, please feel free to ask us! Send me a private message if you want to chat off list, read through the archives here, whatever it takes to get you feeling more comfortable about it. Knowledge is a big part of acceptance. We've all been there and the adjustment is as much emotional is it is physical.

- last thought... passing out and being unable to drive is no way to live if it can be fixed with a fairly simple surgery. It's inconvenient to say the least. Is it dangerous? I had no clue until after my surgery how close I was to cardiac arrest, how easily I could have died if I'd waited any longer. Don't risk your life.

NCS

by ela-girl - 2008-08-27 01:08:29

Hi, Angeldk.

I suffered with nuerocardiogenic syncope for 5 years before almost dying one day and having my pm implanted via emergency surgery. After all the tests I had and trips to the ER and wearing monitors...they only really caught what was going on with my heart once in the ER...and that is when I went for the pm right then. NCS sucks. It robs you of life. And it is usually consistently inconsistent. That's how it was with me. I felt like I had no life and was also sleeping it away. I couldn't do anything or be by myself. My original doc just put me on meds to control my varying heart rate. When that didn't work, he just upped the dosage. He said he would never put a pm in someone as young as me. (I am now 31 and going on 2 years with my pm). Glad I moved states and got a great EP. My heart rate would stay at 4 BPM for minutes on end during "episodes" and my BP would be at least 60/40 if not lower a bit at times. I suffer from the NCS, severe bradycardia (no tachy episodes for me in years now), and heart block. There are lots of us who are in your age group on this site with pacers, too.

If you use the search feature in the upper right hand of the site, you can search for NCS or other things and find all the stuff we have written about this condition and our experiences. There is a handful or two of us NCS patients on this site.

What terrifys you? Your condition? The thought of a pm? The pm shouldn't terrify you, I think. What could happen to you without it should. I feel like doctors are a pain, in general, because they don't take the time to explain things or listen. Some of us have great docs, though, and we are blessed. Just be your own best advocate and make the doctors listen!

For me, the pm gave me my life back. I can drive again, hike, go shopping alone...anything I want to do I can. I have energy. The pm is helping to control my conditions so much so that I even got to go off my meds.

Keep us updated on you. If you do have a pm implanted, we'll be here for you. We are a family. The surgery for the most part is a breeze, and we can give you good recuperating tips, too!

Stay positive and be persistent...
ela-girl

thoughts as well...

by jenjen - 2008-09-04 01:09:28

I received a pacemaker first when I was 15 years old which is 7 years ago and I passed out at school about 5 times and then in the ambulance about 15 more times and when I got to the hospital my beats were going from 201 to 55 in one beat and jumping around and then I got a pacemaker implaned that following morning. I am thankful for getting it I do not have to worry about passing out when driving or at work, even though it is not my most favorite thing getting a new pacemaker every certain amount of years but it saves your life! I am not sure why they still have you on medications and why they do not take you as serious as every other patient they see! Let us know how it goes.

You know you're wired when...

You play MP3 files on your pacer.

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