New to this!

Hello everyone,
I am 23 years old and have been diagnosed with Neurocardiogenic syncope since I was 11 years old. I was told I would most likely grow out of it. Since I am on this website, you know that's not the case. For the past decade, my syncope has been controlled using beta-blockers. However, in the past year, I have had more events, including passing out while driving. Luckily, when I started to have the tunnel vision that occurs before all of my events, I pulled over and parked the car. However, my cardiologist (who I just started seeing a year ago) has recommended a pacemaker. This is the first I have heard of using pacemakers for NCS. I am interested in hearing stories about the quality of life with those who have a pacemaker, especially those who play sports. I have been playing soccer (goal keeper) since I was a kid and I am worried I might have to stop playing if I get a pace maker. Also, I am not sure how pacemakers are for those people who have seizures. I am also diagnosed with Juvenile Myoclonic Epilepsy (diagnosed around the same time as NCS.) So any stories about how pacemakers are with those who have seizures would be appreciated! Thanks for your help everyone.

5 Comments

2

by billylittle - 2013-05-17 09:05:47

It took two ablations and a pacemaker to get mine under control.

holter

by Tracey_E - 2013-05-18 08:05:23

Have you had a holter monitor? That can tell you if your heart rate is pausing or stopping when you have episodes. NCS can be heart pausing, bp dropping or a combination of the two. A pm can only help with the heart rate part, they usually use meds for to control bp. I would want confirmation that part of your problem is your heart rate, but if it is then yes the pm can help.

Random thought... beta blockers DROP blood pressure. Most people I know with NCS are on meds/diets to raise their bp. Also bb will make your heart rate lower. Can you see how you do without the bb before making any big decisions?

You can play soccer with a pm. Competitive karate and tackle football are about the only things most drs agree we shouldn't do, but they make protective shirts if that's your thing. Don't think of this as limiting you. For me, it opened up a whole new world. My problem is different than yours- congenital av block so my heart rate never went up with activity before the pm- but I suddenly had the energy and stamina to do whatever I wanted instead of constantly battling fatigue and dizziness.

P.S.

by britt77016 - 2013-05-18 10:05:10

I also have seizures-although mine are non-epileptic and happen only sometimes after I pass out (when the blood is returning to my brain). Also, i'm 20 years old :)
Britt

Hi!

by britt77016 - 2013-05-18 10:05:39

Hello!
I have NCS really bad also as well as POTS, (all forms of Dysautonomia). I do drive but pull over just a you do. I pass our anywhere from one to even several times a day. I am getting the Biotronik Evia DR-T pacer which controls blood pressure by speeding up your heart-rate to compensate for the BP drop. What kind of pacer are you getting???
Britt

similar condition

by sramsey - 2013-05-20 12:05:56

Hi there. I am 25 and also have a syncopic disorder. I have been unable to drive for a few months now because turning my head too far (I.e., checking my blind spots) triggers the dizziness and/or fainting spells. I had a Biotronik Evia SR-T implanted two days ago. It is too early to tell what kind of improvement it will make, but I'm very hopeful. I wad convinced that ny conditionally bad enough to warrant the device, but after seeing how my heart 10a behaving during my one night in the hospital, I can only be thankful that I don't have to worry anymore.

You know you're wired when...

Airport security gives you free massages.

Member Quotes

But I think it will make me feel a lot better. My stamina to walk is already better, even right after surgery. They had me walk all around the floor before they would release me. I did so without being exhausted and winded the way I had been.