Vasovagal syncope

Hi......I've asked everyone with an MD behind their names; maybe you guys know more. (Medtronic pacemaker since 1994) Every so often, I pass out--always know it's coming, and I lie down quickly. There is no "coming back" but a progression to hours on the floor, seizure activity, and a trip to the E R. I've seen everybody in Cardiology, and even Neurology, all say can't see anything wrong. Anybody know from experience or hearsay what's going on?
Thanks for listening.
Jackie

6 Comments

Vasovagal Response

by donb - 2011-09-07 01:09:01

Hi Jackie, I have had 4 PMs' since 1992 partly becuse of vegal problems. I was told my PM will take care of the problem. Well, not completely but it's reduced my trips to the bathroom floor a lot. I have a friend who had her PM implant for a more serious vagel problem. This was a couple years ago and has complete success. Can't remember the diagnosis name but in her case it could have been sudden death without a PM. I'll have to talk to her as to the proper diagnostic name of her problem. I was responsible for her getting the right Drs' with the right opinion and her PM turned her life around. I do know that a lot of people have Vegal problems to varying degrees. I have to really watch my diet & avoid restaurants during flu season, Dr's orders. I've only had 1 episode where I was
hospitalized with a smashed nose. Lost it only for a few seconds, only time since my 1st PM in 1992. donb

Brugada Syndrome

by donb - 2011-09-07 01:09:15

Hi Jackie, Just me again, went back on my e-mails & found where I had saved our friends response. Thought I'd share the info. donb

Cross Talk

by Gellia3 - 2011-09-07 03:09:48

Hi,
I'm not sure if this is the same thing, but I had a similar experience 6 years ago. Started with a full blown seizure and lying in the ER for hours not knowing what was happening. Sent home after hours of tests not knowing what happened.

I contacted my cardiologist and went in for a pacer check.
He brought in an EP that immediately diagnosed it as pacemaker "cross talk". Effectively, something made my pacemaker think I didn't need it and shut it off. As I'm completely dependent, the asystole put me into a seizure. He made a few adjustments to my programing and that was that.

I did have an EP study after just to be sure it wasn't heart related, but pacemaker caused. After all the neurological tests and EP study it was diagnosed as cross talk.

Just a thought.
My best to you,
Gellia

P.S. Except for a few days of short term memory loss, I've had no problems. Life went on.

Keep searching

by Sue H. - 2011-09-07 12:09:17

Hi Jackie, No I don't think we on here know more than MD's but we may be more helpful than some of them are just through our experiences and the fact that some doctors are just plain incompetent, so they will say they can't see anything wrong. I think you should keep searching for a neurologist that knows what he/she is doing. Not normal that you are on the floor for hours and then have seizures.... There are so many tests they can run to see what's going on. Don't give up....... Best of luck Sue

Unipolar vs Bipolar

by Gellia3 - 2011-09-08 06:09:53

Hi again,
I see you have had a PM since 1994. Would you know if your wires are unipolar or bipolar? Unipolar wires, which I have (mine are 1982), are more susceptible to cross talk.

I do hope you find out what the problem is. Having gone through a seizure from erratic heart activity I understand how scary it can be.

GOOD LUCK and let us know how you do.
My best to you,
Gellia

Vasovagal Aftermath

by jenny97 - 2011-09-08 10:09:12

First, let me say how sorry I am that you are going through this. It's terrible to be sick and even worse when even the doctors are stumped.

I can't comment much on your seizure activity, although I did want to ask if it was diagnosed as actual seizures or if it is more along the lines of shaking. You might want to check on this.

I won't go so far as to say that I know more than doctors in general, but I have learned a lot about my own personal vasovagal syncope and aftermath, much of which is unfamiliar to most doctors. So, in this case, mostly all I can do is share my own experience.

After I have a vasovagal spell, whether it results in full syncope or near-syncope, there is typically an aftermath. It can last from minutes to hours, with some effects (such as intense fatigue) lasting for days. Initially, I wake up but cannot move, even to open my eyes. Breathing itself seems at times to take more energy than I have, which is why bystanders and sometimes even paramedics think I have stopped breathing. Sometimes I shake and one of the first questions paramedics ask is if I have a history of seizures. As I begin to regain my strength enough to open my eyes, I am hit by dizziness and nausea that is exacerbated by every change of position/movement. Sometimes this is accompanied by actual vomiting, depending on how severe the episode is. In most cases, within a couple of hours, I am able to move my own limbs and hold my head up for short periods of time. At the end of a 6-hr stay in the ER, I can pretty much always walk to the car on my own (albeit slowly). I go home and sleep and within a couple of hours I can get up to walk around the apartment and within a couple of days, the fatigue and weakness is much diminished (unless I've had another episode).

I recently saw a specialist at a well-known educational institution and he commented on the irony of the situation: people with vasovagal syncope are not in a life threatening situation (unless they injure themselves when they fall), but they wake up so sick that they are frequently transported to the hospital, which is completely unnecessary. However, people who pass out from heart block typically wake up feeling just fine with no aftermath and, even though they need medical attention, they are frequently not transported.

So, I'm not sure if this is helpful or if this is what you are experiencing, but if it is, then at least you know you aren't alone.

Personally, I am going to Mayo Clinic in the next few months to get evaluated and hopefully get things more under control. Depending on your circumstances, your insurance, and your diagnosis, you might consider something similar. Otherwise, try to find a specialist in your area who has a lot of VV patients. Otherwise, it is less likely they will know how to help.

Good luck to you in your search for answers and adequate treatment!

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