vasovagal syncope - 2nd Opinion?

Hi Guys,

I know that it is essentially up to us whether or not we decide to get a PM. But for me, I have the vasovagal syncope issue and therefore I have one of my cardiologists stating that I defiinitely need a PM and he works at Stanford and also confirmed this w/ other Stanford cardiologists and they all agree, yes.
This weekend, I had another bad dizzy spell and went into a different hospital and the cardiologists there stated, at my age 31, I should be looking into preventive options vs. a PM. they say that a PM actually do not guarentee that it will "cure" my vasovagal syncope and that I may get a PM and still have episodes of blacking out, low heart rate, etc. These dr.s also said that people with vasovagal syncope w/ a PM and people w/ vasovagal syncope w/o a PM experienced little difference.

So right now, I'm REALLY confused. Does anyone here have vasovagal syncope? If so, why did you go PM vs. doing preventive care? The other hospital suggested taking salt tabs, no alcohol and 8 glasses of water today to prevent vasovagal syncope episodes in my future.

Some help would be GREAT!

7 Comments

Yes

by boatman50 - 2008-06-30 03:06:44

I also have V V S. I suggest you get a second opinion from an EP, a doctor that specializes in pacers and the hearts electrical system. I never had a problem until June 06 and had a pm put in after my heart stopped for 26 seconds. After that I went to the cardiologists office a couple of times and I have to say they could not answer my questions. I then saw my EP and he is great, and can answer all questions. I am 51, and he also said that if he was there when it happened he might have done something else instead of a pm. He has me drinking a lot of fluids, water, Propel, G2 and I can use salt as I like, and this has helped the V V S. He also has my pm lower rate at 70 bpm to help avert any V V S. All of this has helped me.
Best of luck to you,
Boatman

Give it a try

by ted - 2008-06-30 03:06:48

Increasing salt intake is one of the methods for dealing with vasovagal syncope so it probably couldn't hurt to try. But I am not a doctor and your doctors know your situation better than anyone in this or any other internet group. Good :luck. Keep us posted on your progress

I have vasocagal syncope and a PM

by sarajane - 2008-06-30 05:06:43

Hi Lamby

I have the same condition as you, all my life I was wrongly diagnosed with epilepsy until I was 22 and fainted and had a cardiac arrest during a tilt table test. I was told I need a pacemaker, spent a week in hospital under observation and then had it implanted. I didn't really get a choice it was basically don't do it and your playing Russian roulette with your life. I've had it for 4 years now and I'll be honest it was hard to adjust and it hurt after the operation, but it's been 100% worth it, I feel so much safer, my quality of life has improved, I don't have to take any medication or do anything different, my PM just kicks in when my heart drops below 50 beats and it kicks it up to 100 until my heart can take over again - so it's on demand whenever I need it. My trigger for vasovagal syncope is pain and anxiety, but I haven't fainted once since I've had it, so it's completely changed my life.

I know there are no guarantees and you have to do what works for you, and a PM is a life long thing you'll always have, but for me, I know I'm not going to faint and not wake up from it.

Also I have been told that PM’s have got even better in the last four years and when I have mine changed in three years it’ll also be able to detect a drop in blood pressure and kick in more subtly so I won’t even notice it, so things are very advanced now. And the good thing is with my PM I don’t need to avoid alcohol, and I love a glass of wine!

I hope this helps with your decision, I’m aware that this condition is often something women grow out of, but I wasn’t prepared to take the chance of not growing old enough to see if that happens, at the moment though I’m using it 50% of the time, so it was obviously the best decision for me.

Good luck, let me know if you want to discuss further.
sx

same as above

by paula07 - 2008-06-30 10:06:13

I also have vasovagal syncope and a PM. I am 23 now, but was 22 when I got my PM because of fainting and my heart stopping for 6 sec. when I passed out on the tilt table. I haven't passed out since I got my PM but I didn't get a second opinion when I was told I needed one because of getting married and insurance issues, plus my heart not beating for 6 sec. was a big deal to me and my family. My new dr. says that we'll look into whether or not I'll get a new one when this battery runs out in 10 years. My cousin who is 20 has the same condition, but her dr. is trying to control hers with salt tablets and a beta blocker, which is working pretty well so far, but he also said that she would probably need a PM in 5-10 years.

It really is up to you and your dr. as to what you try. Living with a PM isn't bad, it keeps you from fainting (or has in my case) and after a while, I got used to mine and it doesn't bother me, I am hardly aware of it most of the time.

I hope this site helps, I know it's helped me.

Good Luck!
Paula

Ditto

by sboissonnas - 2008-06-30 10:06:44

Hi Lamby,

Another "same here" answer - I fainted easily my entire life (usually due to pain) and was always told that I must have vasovagal syncope, I'm just a chronic fainter and not to worry too much about it. Then I fainted on the way to work, landed in the E.R., and a couple of days and a bunch of tests later (including the tilt-table test, which I'd never had before) they discovered that I was fainting because my heart was stopping. (I went asystole on the tilt table for 23 seconds before they woke me up.) They told me I absolutely needed a pacemaker. I was 32 at the time (2 years ago).

I didn't want a pacemaker! Like you, my first thought was, "but I've been fine my whole life, I don't need it, I'll just keep being fine!" My second thought was "er, I wonder how many times I almost died and never knew it?" .... When I realized that there was absolutely nothing I can do to *guarantee* I'd never have another episode again, it made the decisions a lot easier for me. And when I heard from enough people that getting a pacemaker really isn't a big deal (meaning that it doesn't prevent you from doing most things you used to do, and you barely notice that you have it after a while), I decided it was worth it. As angry as I was that I was put in that situation, I still realized that I was better off with the pacemaker than without it.

Like the other posters, I haven't had another incident since then.

Good luck with your decision!
-Stephanie

VVS

by shockbox340 - 2008-06-30 10:06:53

Lamby,

Do your homework. VVS is one of the few conditions out there where which PM you get can make a huge difference in the success in treating the condition. There aren't that many VVS experts out there, the one most widely known is in Toledo Ohio of all places (no offense to any Toledo-ians out there). I'm not naming names in here, because I don't feel like this is the place for it, but do your research into how all the 5 companies address this issue and what research has been done on their systems.

Just my $0.02....

I agree with everyone

by bini - 2008-07-01 07:07:29

Hi Lamby,
I agree with what everyone is saying. I have VVS due to a condition called POTS/Dysautonomia. This is causing a HUGE drop in my BP when I stand. I have a biotronik cylos and am on tons of meds to regulate my BP. I also drink propel and try to have salt in my diet.

I think you need to see an EP who specializes in VVS...shockbox mentioned an EP in Toledo...and I see this Dr. He is excellent! My EP gave me the choice of getting my PM. He did say that it doesn't help everyone with my condition but it has helped most people. In hearing that I realized that it was worth a shot, since nothing else seemed to help. I am happy I got it!

Good luck,
Christine

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