Vasovagal syncope?

I've been searching for answers since receiving my pacemaker over a year ago. Even though the blackouts have stopped I am still not 100%. I experience the same strange feelings that I had before blacking out (just for a few seconds, as pre-pacemaker) and then I 'loose' a few seconds. After I 'come round' from this funny turn I feel confused for a few seconds (again, just as I used to feel after the blackouts).

I still haven't had a name for my condition. All that I know is that my heart would slow down and then stop for seconds before I got my pacemaker. No explanation as to why this happened. I was just wondering if maybe I could be suffering from Vasovagal Syncope (also called Neurocardiogenic Syncope). Does anybody know of anyone who still suffers symptoms even after having a pacemaker? I also wonder if a change in the pm's settings could solve the problem? Could it be that the pm doesn't respond quickly enough on occasions?

I would appreciate any suggestions. I have an appointment to see a neurologist in July and I do not want to be labelled as having a neurological problem (such as epilepsy) if that is not the case. (I have read too many stories about people being on unnecessary drugs for years).

Thank you,

Morlew


10 Comments

One more thing to ask about

by sboissonnas - 2007-05-25 01:05:00

Hi again,

Another thought occurred to me - it's kind of a long shot, but next time you have an EKG, ask them to check out your QT interval. I and some other folks on here have a condition known as "Long QT Syndrome" (LQTS), where the electrical system in your heart takes too long to recharge itself between beats. (Q and T are points on the EKG, and if they're too far apart, that's bad.) There are lots of different types of LQTS, and most of them are quite mild, but it too can lead to slowed heartrates and blackouts. In fact, the symptoms are so similar that it's often misdiagnosed as VVS...

Again, it's a very long shot. I have to think that with all of the EKGs they must have done to set you up with a pacemaker, somebody somewhere would've noticed if you had it. But apparently it doesn't always show up on an EKG even if you DO have it, and not everyone looks for it, so that's why I'm mentioning it.

If you think you have one or the other of these, ask your doctor about it. There are tests they can do to find out for sure - the "tilt table test" is for VVS, and the "epinephrine challenge" (may have other names at other hospitals - that's what they called it at mine) will test for LQTS. If you want to know more, feel free to message me - don't want to bore you with details! (I have both conditions, although most people only have one or the other.)

Keep us posted!
-Stephanie

Try the rate drop response

by bowlrbob - 2007-05-25 09:05:06

I also have VVS and i had to ask the Doctor to find out for sure. He also put my heart rate up to 70bpm. Then added the rate drop response. if my heart rate goes down more than 25 beats over a 2 minute span the pacer kick starts my blood pressure by jumping the rate to 100bpm for 2 minutes. This gets the blood pressure up quickly. I have the same little blackouts you are talking about but they last about 1/10th of a second. I have gotten where i hardly notice them anymore. Bowlrbob

I'm in the same boat!

by boatman50 - 2007-05-25 09:05:18

Hi Morlew, I also had a pm put in last June. I passed out at home and then again in the hospital and was told my heart stopped for 25 seconds. Pacemaker put in within an hour. I never had a symptom before but I have had those funny feelings since. I was put on a beta blocker for awhile and it did nothing but make my life miserable. Like being in slow motion. Not to long ago the cardiologist wanted to double the dose but I didn't want to so he sent me to the ep. He took me off all meds and rased my lower limit to 70 bpm from 55 bpm. I do feel better but still get those spells though not as often or as strong. The idea is (his) to keep the lower pace up and see if we can get passed the spells and then maybe drop the rate down some. I can feel my heart going at 70 and it bothers me a little just knowing its going faster. The ep also said that meds for this condition are hit and miss, you would be very fortunate to find one that can work. I am happy to be off them myself. It also seems that hot weather affects me or bothers me more then it did. Best of luck to you, let me know how you make out please.
Boatman

Keep hydrated!

by sboissonnas - 2007-05-25 10:05:54

Ho Morlew,

I'm also a VVS, but I haven't had an incident since I got my pacemaker last October. (I never really had that many incidents anyway, though). One non-drug-related suggestion I can give you is this: if you're not already doing so, make -sure- you stay very well-hydrated at all times. For me, it turned out that most of my fainting spells happened when I was dehydrated. They told me in the hospital during my tilt table test that dehydration can help bring on the fainting spells (which is why they'd kept me nice and dehydrated all day before the test, and then immediately pumped saline into me afterwards).

Just tossing that out there, it's a small thing that you can try that won't add more drugs to your life.

Good luck!
Stephanie

Thank you

by Morlew - 2007-05-25 11:05:58

Thanks for the above comments.

My blackouts went on for nearly two years and they would come in batches over 3-4 days every 4 weeks or so. The worst day I blacked out 8 times so you can see why I am sick and tired of this. I had really hoped that getting the pm would be the end of my problems. Obviously, I am really happy that the blackouts have stopped but I can't enjoy life to the full 100% of the time.

I have had a particularly bad week suffering from these 'funny feelings' and am feeling quite emotional at the moment. Someone somewhere must have an answer!

Morlew

Hi!

by tcrabtree85 - 2007-05-25 12:05:06

Hi Morlew,
I'm no expert but I would ask your doctor if it is possible that VVS could be your problem. I have it and continue to still have with the pm. As I have understood for some it fixes the complete problem getting the pm and with others it doesn't.
Whenever I call it with any problem the first question is have you been drinking water. It seems that 8 glasses a day isn't always enough to keep us going. I suggest alog with the others trying to drink a lot more water and gatorade and see if that helps you out any.
I will be praying for you. Please keep us updated on what you fine out.

Tammy

Thanks again

by Morlew - 2007-05-26 05:05:21

Thank you again for all of your comments. It's good to know what to ask when I'll see the specialist. It's also comforting to know that others have had problems but seem to have found solutions. I will not give up until I have found an answer to this.

Morlew

VVS NCS

by joec - 2007-05-26 07:05:53

Morlew,
I was diagnosed with VVS NCS , my problem is also rate drop. Since my PM implant in January 2007 I have only blacked out once. My EP has the rate drop response feature turned on. During the day my heart rate 70 bpm and the if the rate drops 40 beats in 15 seconds or less the PM intervenes by increasing my rate to 100 bpm for two minutes. At night the sleep feature is set that my rate won’t drop below 40 bpm, this make sleeping much easier.

I still don’t feel great I get the same feelings as before but not as bad. For 13 months before my PM I had an implanted loop recorder and the fainting or near fainting episodes were a direct response to rate drop. Shorting the response to 15 seconds has helped a lot.
The counter in my PM records 200 or more of rate drop episodes per week which wears me out some days it feels as if my heart rate just stays as 100 bpm all day. I guess this is better than the alternative, it was just a matter of time in my case before I was seriously injured or god forbid someone else.

Seconds before I would black out I would get funny feeling, just like before failing the tile table test, lying flat on the floor was the only way to prevent from blacking out. Now at times I still experience the say symptoms, not as extreme but maybe only five to ten times per week, only I don’t have to drop to the floor any more.

I am just having a hard time adjusting to the increased heart rate. For the last 15 years my resting pulse rate was in the low 40’s and 30’s while sleeping. I was an avid kayaker and runner which I have not been able to return to doing yet but am planning to soon.

I hope this information is a help to you, ask your EP if rate drop is your problem at your next visit. There are many people on this site that the PM has done the trick and are as good as before. You and I both will be there soon, I believe it is just finding the correct settings to get us back on track.
Good Health,
Joec

Wow, so many of us...

by caliope - 2007-08-01 09:08:22

Hi Morlew,
I;m 29 and have had nerucardiogenic syncope since I was fifteen, but they didn;t properly diagnose until I was 22. I got a pacemaker in 2001 and the spells became a lot less frequent, I never fully lost consciousness again and my life turned around.
Now I have not been feeling well because I have to have a lead replaced, but still life is much better than before PM.
I still have to be careful, sleep enough, eat and drink enough and steer clear of really crowded places. I don´t know about everybody else, but for me the hardest part to cope with is the fatigue. Right now I don´t faint any more, but I´m still tired all the time and it is hard to believe this is due to my heart and not to just my personality! Anybody else ever feel like this?
Best luck with the diagnosis,
Cas

One Other Possibility

by Jim_Ed - 2013-05-11 01:05:15

Hi, Morlew, I have no idea if my situation would be yours exactly, but I, too, had/have those blackouts. I stumbled on to what my problem was sort of by accident. What I have is technically called "Postural Orthopedic Trachardia Syndrome" (P.O.T.S.) It basically means there are times when your heart can't pump enough blood to your head in time to keep you concious. One day while I was in my recliner watching TV, I slipped my BP cuff on my arm with the unit turned off. Immediately, when I got up, I stood at the kitchen counter and turned it on and let it check my BP immediately after standing. My BP was dropping to 80/48. Which, that is pretty close to passing out. So, there are times when I might be looking up, or bending over pulling weeds, etc that does the exact same thing. You might try this little BP test, and it will at least tell you if your symptoms are like mine.

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