Help dealing with vasovagal

Hi guys,

I am 30yrs old anI have recently been diagnosed with Vasovagal Syncope (or neurocardiogenic syncope). During my syncope episodes my hearts stops (approx 18secs) hence the pacemaker.

Does anyone else suffer the same issue? How do you deal with it? what are your triggers? Does it get worse over time? Any hints and tips to improve my general health? What sort of settings with the pacemaker are useful?

Those are just a few questions that I have.

Thanks for your time :-)

5 Comments

Me too

by TypeR03260 - 2013-04-27 03:04:08

Hi,

I have exactly the same problem, the last big pause they recorded in hospital was 58 secs before my heart kicked back to life.

Had a PM for 10 years now (since I was 24) and it has worked great in stoping the episodes. I never had specific triggers, I've had episodes stood, sat, hot, cold etc but it is generally accepted that anything that stimulates the nervous can be a trigger so emotions, pain, environment, movement etc etc can all b trigger events for different people.

In terms of settings since all you need is rate drop response the key is:

1. Getting the device to recognise a rate drop, for me eventually we found the right settings and it had to see a very aggressive drop before it would pace.

2. The 2nd thing though is setting up the PM so that it doesn't pace when not needed. This can be tricky as every patient is different, but after a bit of tweaking can make a big difference to how you feel day to day.

Hope that was a least a little help )

Me Three

by Moner - 2013-04-27 11:04:56

Hi Addlia,

Welcome!

I received my pacemaker for the same reason in January 2012.

The only trigger for me is when I get a stomach virus and begin to throw up, I begin to pass out and my heart stops for around 22 seconds. I usally get a stomach virus every 7 years.

I've had this condition all my life, but this time around the hospital decided to implant my pacemaker. I still have concerns about this.

My rate drop response is turned off, because it would interfer with my workouts.

So if your athletic, you might have a fast heart rate recovery, which would be perfectly normal for you, but your pacemaker might interpret that differently, talk with your doctor and see if your rate drop response has been turned on, you might need adjustments like TypeR03... mentioned, or you might not need it turned on at all.

Best wishes,

>^..^<

Thank you

by Addlia - 2013-04-28 01:04:41

Thank you for your comments, I was starting to think it was all in my head :-(

I have been having these episodes since I reached puberty and only had one about every 5 yrs, but since having children they are getting way ore frequent, I had 4 in 8mths before the PM.

My triggers are stress/anxiety & illness (usually gastro symptoms). Also I get so damn tired that I have done barely any exercise for 4mths since my last really bad one.

I'm really hoping that the PM is also a mental safety net that allows me to not get so stressed about when the next episode will occur as that makes me worse. And I can't wait to get back into some decent exercise (only 10 days post PM implant).

also paced due to syncope

by JustKrs - 2013-04-28 02:04:43

I also have NCS and have a pacemaker for it.

My symptoms started out of the blue a few weeks before my 30th birthday and continued for 3 years until after seeing docs at both Northwestern in Chicago and Mayo Clinic in Rochester, MN... they decided it was time to put in a pacemaker.
Besides the obvious passing out.. my symptoms included vision greying out, numbness and tingling in my hands, feet, and fact, and an extrememly low pulse rate for hours or somettimes days after passing out.


I have a Biotronik Evia pacemaker.
Biotronik pacemakers are particular useful because they, unlike any other company out there, don't use ONLY the pulse in order to determine when you need to be paced.

As my docs at Mayo explained to me... when it comes to syncope, if we only judge it based on pulse... while it WILL make sure your heart doesn't stop... most of the time it will not catch it in time to keep you standing or active.. I would still pass out and hit the floor.

So I have the Biotronik Evia.. and it's great.
Since I got it almost exactly a year ago the ONLY time i've had symptoms is when i became HORRIBLY dehydrated due to norovirus. But that makes sense... doesnt matter how fast the heart is beating if there isnt enough fluid int he system, the pump is not going to get the fluid everywhere it needs to be.

Also, since the put in the pacemaker... i've been able to come off ALL the meds that i was on (fludro, midodrine, etc)

Me five...

by JMS - 2013-04-28 08:04:35

It was described to me as Heart Block stage III. I would have an episode here and there all of my life and then they picked up over the last five years. My GP, thought I was having panic attacks and feed me Citalophram, (celexa)... Which at the time was not known to cause Heart issues.

The first week of March, 2013 I hit a wall and starting having Heart Block hourly. I was admitted to Cardiac Critical Care and two days later I had a double pacemaker.

My only issue now is I have a significant level of depression. I'm not really sure why, but it is very hard to shake it off.

Many things that I use to enjoy I now simply do not care for. I hope that turns around.

You know you're wired when...

You are always wired and full of energy.

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