Syncope....still

It's been nearly 3 months of regular syncopal and near-syncopal episodes. I've had multiple ambulance rides and even more emergency responders visit. (Never by my own choice since I am fully aware that my condition is NOT life threatening.) My pacemaker settings have been changed so many times by so many people, I have no idea how they're set. This morning, they were supposedly adjusted by my regular dr who indicated he was setting the lower limit of the pacemaker to 70 to try to keep my heart rate, and thereby my blood pressure, up a little. But, if that's the case, why is my pulse 54 right now?

My next question is for any of you who have been diagnosed with vasovagal or neurocardiogenic syncope or are being treated with rate drop response. What settings have worked best for you? How do you know what the settings do? And how do you get your drs to get the settings right?

As background, I was diagnosed in my early 20s, about 10 years ago, and am on my second pacer, which was just implanted in 2009. I am also taking beta blockers. I have a medtronic adapta.

Any suggestions you may have will be welcome. I seriously cannot afford another run-in with the paramedics.

3 Comments

Vegal Episodes

by donb - 2011-07-21 10:07:12

Hi Jenny, As I'm nearing 20 years of PMs' for controlling vegal episodes, I have been quite fortunate. I had my 1st Medtronic PM in 1992 at age 60 which really helped with Vegal attacks, really only had 1 where I actually went down & lost consciousness. I would get near having episodes with all the symtoms but with the help of of using Compazine with an onset I would do OK.
A few weeks ago I went down for a second because of the hot weather & failed to hydrate myself enough with liquids. Felt awfull for about 24 hrs but used Compozine which helped. I want to mention that I know my 3rd PM had RR (rate response) turned on with my low limit at 60 and my high at 130. Presently my 4th PM is a St. Jude and have RR turned off. I don't have the get up & go but have more durability like doing treadmill. I'm also wondering about having RR back on. I'm at 60 low & 120 High now. I think you know what it feels like when you exceed your high limit. Also want to mention as Vegal is stomach related I use 25 mg suppository which help with any onset of Flu like symtoms rather than liquid. I keep them refrigerated but use very rarely. Sorry about answering questions as maybe some other members might help!! donb

Heart Rate PM setting Not The Same

by SMITTY - 2011-07-21 12:07:21


Hello Jenny97,

I'll tell you what I was told about my heart rate not always being at least what the low setting was on my pacemaker. Whether it's right, wrong or indifferent, I'll not even try to guess.

As you know the PM sits there monitoring the heart function and steps in when it sees the need. The heart's natural PM is always trying to work although in addition to skipping a beat occasionally, it may send an electrical impulse not strong enough to make the heart beat. However that impulse will be strong enough for the pacemaker to detect and therefore it does nothing. In other words the heart's natural PM will fake out the manmade PM sometimes.

I know you said your low setting is 70 and you find a HR of 54. That seems like a lot of faking, but my low setting was 70 and I found a HR rate as low as the upper 40s frequently. To say I felt bad is a gross understatement. When this was going I started asking questions about how can this be if the PM is working. That was when I got the explanation of the heart's natural PM faking out the manmade PM.

I asked to have my low setting increased to 80 even though I was assured it would not make any difference. Well guess what, the old blind hog found an acorn. Within minutes after that increase I could not believe how much better I felt. I've told this story probably too many times but it is such a success story for me I enjoy telling it.

The day I went in for these changes to be made we had to walk about 400 ft. from the car to the PM Clinic. I walked very slowly and still had to stop a time or two to rest. On the way out I felt so much better I was walking so fast my wife told me a couple of times to slow down as she couldn't keep up. Those good times continued until the battery ran down a few months later. That PM was almost 9 years old. I got a new PM and asked for the same settings, and was told I got them but things have not been as good. Not nearly as bad as before I had the low rate increased, but I'm still trying to get back to where I was before that battery died.

I have come out of all this convinced that the Dr/engineers that make our PMs known what they are designed to do, but it is the same old story. Connect a man made device to our heart and mother nature still has a say in what happens. The result is things are not always as predicted. That is where the patient must come in and insist the experts keep trying to improve what we are getting, regardless of what the "books" say should be happening.

Now, one last word. I'm not advocating that you are anyone insist on an increase in their low setting. I was lucky and it worked for me. With that I'll stop.

Good luck to you,

Smitty

Thanks...

by jenny97 - 2011-07-26 02:07:44

to all who responded! It's good to hear perspectives from other patients who actually know what all this feels like. And thanks for sharing what's worked for you. It opens up some new options.

And it's especially good to be reminded that there's hopes. Sometimes when things start heading south, it's hard to remember that things will start looking up again sometime.

Thanks again!

Jenny

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