Pacemaker--what does that mean long term?

[dolfnlvr]

Okay, so I have years (like up to three or four) at a time when I am all but asymptomatic.  Maybe some PVC's here and there, or a fainting spell due to absolute triggers (pain, low BP, injury, injured loved one etc) once or twice a year, sometimes none.  Up until July of this year, I had been nearly "normal" for over three years!!!  It is so easy to forget the scary symptoms and the uncertainty during those times--almost like you think you are finally "cured" and can "get on with it."

Anyway--for a little over a month now, I've been suffering what is likely a combination of vasovagal and panic attack (I've been diagnosed with vasovagal in the past and my father suffers from panic disorder, so no surprise there).  I can learn to live with all of this--once I am sure this is "all it is" but I have a question for any of you who may already have a pacemaker to mediate Neurocardiogenic syncope or Vasovagal.

Here's the thing--my heart rate drops to ridiculously low levels when I pass out.  Like, scares the doctors when it happens slow (if they are there to see it).  When I was 19 years old, I was put on NORPACE to keep my HR from dropping, and thus cutting a fainting spell off at the pass.  Well, NORPACE, as it turns out, is probably as dangerous as the fainting if not worse--so, I'll not do that again.

Thing is, when your heart rate drops like that, it isn't "just a fainting spell."  And, the fear that maybe your heart will forget to start up again is a REAL one, not just a made up anxiety issue (though it doesn't help keep anxiety at bay that's for sure).  I was told back when I was 19 that if the NORPACE didn't work, the cardiologist would be inserting a small pacemaker.  Here's the thing--I think I want them to now--just, kind of like a "battery back-up" for the black outs (haha).

Here's the question part.  For any of you who HAVE a pacemaker (but perfectly "normal" heart physiology and anatomy) what does it do on a regular basis?  Do you even know it is there?  What is the maintenance?  What if the battery "runs out."  (How do you know).  If the thing stops "working" would you know?  Does your heart become dependent on the thing?  Do these pacemakers work continuously or is it "episodic" (i.e. turning on or working to pace only when it registers a slow rate etc)?

So, lots of questions--I have an appointment with my cardiologist next week as a follow-up to a couple of sleep sycope episodes.  I want to live my life as "normally" as possible--and if a pacemaker will provide that "back up" then I'm willing to explore the option.  But I don't want to jump into it without real information--from people who are already THERE (and for similar reasons).  

ANY advice, comment will be welcomed.

And, as always THANKS EVERYBODY!!!

[Heiferly]

If they haven't been able to catch the information they want on a holter monitor, have they (you) considered an ILR (implantable loop recorder)?  Or perhaps you've already had one (sorry if I'm bringing up something you've already discussed in past posts)?

I'm just tossing that out in case it's something you/your docs hadn't considered.  It might give more information on what your temperamental ticker is up to when you have your episodes, particularly if you're having them at times when doctors aren't observing such as overnight.  

Cheers,
Heiferly.

[dolfnlvr]

Thank you both for the follow-up.  I'm not sure where we are at this point. Seriously--every test the Dr's have run have come back making me look like an idiot.  I passed out in bed one night--they don't know why, but my bloodwork says I am perfectly healthy, my halter shows nothing more than a few PVC's and my ECG says that my heart is beautiful.  All of this is good news--BUT--I'm exhausted, whenever I exercise I get all jittery and my heart pounds like a subwoofer at a rock concert (not fast but HARD) and I struggle to sleep that night (due to faint feelings) and feel ill/fatigued for at least another day.  At first I was worried about the stupid fainting, now Doc is running a stress test to see what's up.  As far as I can tell, it isn't cardiac, but he's not convinced.  My general practitioner is stumped--as I said all blood work (including one for hypoglycemia) is beautiful.  I'm up for a brain MRI, and bunches of other tests, but nothing is wrong.  And no-one is buying my plea to diagnose me as having panic disorder and calling it a day--both say, nope, not caused by panic, may induce panic, not caused by.

So--I'm going to apply for that show Mystery Diagnosis one day.  Problem is, I have to be diagnosed first!!! :-O

My cardio doesn't seem interested in the pacer idea.  He dismisses my fear of my heart not restarting after a faint, and says that research doesn't show that it will prevent a faint, so no point in invading a healthy heart with the pacer.

This is sooooooooo frustrating!!!  I'm glad it doesn't seem "serious" but it still, well it just IS, and I'm ready to be healthy again.  I just keep telling myself, I've done things like this before, and so far, there has always been the "other side" when I got better.  I just forget in between what I will call symptom episodes that it can get this awful.

Mom2four--do you remember the PVC checklist?  The one that says you go from scared out of your mind to posting words of wisdom to everyone else on the board to just living life, only to end up back on the board when the things come back again!!!???  

Voila--I'm the perfect example.  We should frame and publish that list!!!

Yours,
April

[LucilleKP]

Hi there, I have to be brief because I am not feeling well. Of course, your cardiologist will address all those questions. My experience is that my HR became dangerously low and I went to the ER --after a few days, they implanted a pacer. I hardly notice it. I am dependent on it for almost 100% of the time. I had it implanted when I was about 44 --I am 49 now. Yes, eventually you will need the battery replaced ---the duration of time depends on how much your body needs it. But, they will check your battery life frequently. There should be no worries there. I dont have to worry about my heart at all. I still have cardiac symptoms but I know that I will not drop dead from my heart not working! The procedure is a drag, but I did not find it a total freak out. Give yourself more time to recover then what they tell you. You will have a scar, but it is not bad. People tell me that they dont even notice. Mine was placed on my right side, and I am right handed. That is unusual and sometimes becomes a problem (tennis, e.g.). Just check into that one :-) ---if your cardiologist suggests it, do it. They have really smart pacemakers these days.

[Mom2four85]

I've had fainting and arrhythmia episodes since age 9; but didn't find out how severe these were until age 42 when I had testing done.  My TTT showed when I faint my hr tanks and I have no palpable pulse, then I had an EP Study with ablation to try and get rid of my arrhythmia's

During the EPS, they found I had malignant arrhythmia's/vt called polymorhpic VT so they implanted a Teligen 100 pacemaker/defibrillator.

The pacemaker is supposed to regulate the HR so when it gets to a certain hr it will pace you and then make sure it doesnt drop below that rate.  They've had to set mine a few different times and now I'm at 60; but it still hasn't stopped me from fainting because my problem is my bp can drop 100/60 points in a blink.

The EP at a large university here told me when your problems are due to the ANS instead of the heart; which they think mine are mixed - a pm/icd will not do alot for fainting episodes.

I'm only paced about 1% of the time for low HR's but I've fainted often because my bp tanks on a dime and I'm out before the pacer has had time to pace me.   I just had 3 Vtach episodes in June and fell into the side of the tub and had a concussion, contusion and sprained neck.

I still have severe vertigo, dizziness and all my pre-syncope episodes and problems than I had before implant; which have worsened over the past 2 years.  I also have alot of issues during sleep - sleep apnea and VT Vtach episodes; and I get shocked quite a bit during sleep from my VTach and heart stopping.

They told me that the pm/icd was the last resort but since meds & internvention hasn't worked, there's nothing else they can do for me and I just have to learn to live with the problems, learn my triggers and avoid them at all costs.

After the implant, the wounds heal quickly you just can't use your arm for a few weeks then you really don't know it's there unless there's a problem with the device or leads.  

Every few months for the first year you normally go in for a check and they see battery status and tell you how long you have left. When it gets close, they can see it in the report and then you may hear a beep.  When the battery runs out, you go in the hospital and have the unit replaced and connected to the same leads that they orginally placed in there.

[dolfnlvr]

BTW--just for reference--I'm 37 y.o. now.