Problems still after pacemaker

Hi everyone,

So, I had my pacemaker put in 3 months ago, and I've been having weird heart symptoms. Like, the best way I can describe it is that my heart feels weak or tired. And sometimes it feels like my heart is beating SUPER fast, and then I go to take my pulse and its at like...60 something. Or, my heart is actually beating really fast and hard and I feel it in my chest, but then I can feel my heartbeat in my neck (which is weird in itself and freaks me out so bad sometimes I get dizzy) and I feel a SUPER strong beat and a faint beat, instead of 2 pretty even beats. Does this make sense to anyone? I feel really stupid when I call my doctor because I'm probably just being pathetic. Has anyone experienced any of these? I told my Doctor about this on friday, and she called me back today and said they want to see me this week but, a little bit of a preview of what this might be or some insight by other people who have experienced it would be great!

Thank you!

14 Comments

Absolutely nothing Wrong...

by donr - 2013-07-22 11:07:28

...with you that perhaps some understanding & settings changes won't fix.

For starters, relax - you are working yourself into a frenzy over things that can probably be fixed.

All of these symptoms we read about all the time, so you are NOT riding a great white stallion & paling around w/ a faithful Indian companion named Tonto!

I can give you insight to only one of your symptoms - the successive heartbeats that go "thump-THUMP" w/ an apparent pause in there before the next regular beat. All that in place of "...two pretty even beats." That's called a PVC for "Premature Ventricular Contraction." It's where the first beat comes sooner than it should under normal timing (Premature - pretty neat, huh?) & is kinda wimpy because the ventricles were not FULL of blood. The second, stronger beat is the result of extra blood from the early previous contraction being in the ventricles & the heart works a bit harder to pump out the extra blood. Absolutely terrifying, aren't they? Make you think your heart quit on you - temporarily. Fortunately, they may be terrifying, but absolutely benign & harmless. Also, in small numbers - like a couple each minute, they don't do anything for them. You have to have them tens of times per minute for anything other than intervention by meds. Generally speaking, a PM can do nothing for, to, or about PVC's. Given enough time & hearing it from your cardio & us enough times & you will finally believe me "They won't kill you!". Took me a long time hearing that till I believed. I had 103,000 of the little suckers last month & did not sense a single one of them.
Final word - you are not being pathetic - you are struggling to survive in a strange & foreign land. We all nderstand, as does your Cardio - I hope.

Don

please call

by Hope - 2013-07-23 03:07:16

Hi! Hope Don's comment was of help. Do make your cardiologist aware of your symptoms. It is always wise for your cardiologist to be aware of all symptoms, even benign ones. Settings can cause unsettling symptoms, also, that just an adjustment can remedy. Always make sure all doctors involved in your care are aware of all prescription and over the counter medications. You know your body. If it concerns you, it is worthy of a call. Take care. Hopeful Heart

Pvc's

by Harrie - 2013-07-23 07:07:22

So Don, if you know that you had 103,000 in a month the pacemaker is recording them and the medical personnel are aware that you are having them? A bit confused that you said you didn't feel any of them. Do you just get used to it or what. Does the extra strong one always follow the wimpy one? I think it was Inga in a previous post who said "we all have them" - did she me we as in all pacemaker patients, or we as in the wider population?

Pvc's

by Harrie - 2013-07-23 07:07:24

So Don, if you know that you had 103,000 in a month the pacemaker is recording them and the medical personnel are aware that you are having them? A bit confused that you said you didn't feel any of them. Do you just get used to it or what. Does the extra strong one always follow the wimpy one? I think it was Inga in a previous post who said "we all have them" - did she me we as in all pacemaker patients, or we as in the wider population?

Thanks guys!

by Lkrager - 2013-07-23 10:07:12

Thank you, Don. And my cardiologist will understand my craziness. I think he takes extra good care of me since I'm only 21 and fought them tooth and nail about getting the pacemaker, so he is especially gentle with me haha

They called me and want to see me friday, so hopefully they'll just re-explain what you said and there won't actually be some horrifying problem. I think I'm so scared because my professor told me that they did a catheter ablation surgery on him after he had his pacemaker put it because he still had weird stuff going on, and the surgery somehow went wrong and he was in a coma for 10 days! So, I'm pretty sure a good portion of my fear comes from that.

Thank you for explaining in smarter terms what it was I was feeling. I appreciate it!

PVC's for LKrager

by donr - 2013-07-24 09:07:00

At 21 yrs old, you are authorized to freak out over PVC's - for a while! But there comes a time when you must learn to live w/ them & ignore them. They are most likely here to stay.

These suckers are truly terrifying to the new arrival in the suffering of them, no doubt about it.

Explain it all to the cardio when you see him & get him top confirm what Inga & I have said - perhaps in different threads.

Also, you have a right to be scared, based on the professor's comments, but I highly doubt that you will fall into that category. There are many, many people who have ablations w/o any horrific results like your professor. But I can see how his tale would scare you. You will probably have a bad time trying to dismiss this tale. BUT - ablations are not routinely done for PVC's, unless they are really, really bad & meds or meds + PM do not solve the problem. Really, really bad has to be worse than my situation!

Hope this helped you out.

Don

PVC's & sensing them - Royale

by donr - 2013-07-24 09:07:25

You said it exactly correctly!

PVC's are a royal pain in the neck!

I can recall the first one I ever had, including its time of occurrence: 9:20 PM, 15 March 1975. It was THAT dramatic - I thought my heart had stopped, it scared me that badly.

I did not feel a SINGLE ONE of those 103,000 PVC's - NOT a one. Now - during that same 47 day period, I had 957 RUNS of PVC's & sensed a bunch of them, especially if they occurred late at night while I was sitting here at my computer typing away or playing a game of solitaire before closing down for the night.

Recall that a "Run" is two in a row. So, I may have had a bunch of low count runs that I did not sense. The later night runs were at least a minute long. My response was to say to myself "Hmmmmm. PVC's" & go about my business.

I am no hero or stoic. When I started feeling them all the time some 25 yrs after the first, dramatic PVC, I was a wreck. I heard my Cardio; his head nurse, & finally my EP say "They won't kill you!" enough times that eventually I accepted that fact sub consciously & now do not sense them - unless it's a long run.

BTW: I typically run at an average rate of 3 PVC's every 2 minutes - grind that out over a 30 day period & it is a mind blowing number in the 100,000 range.

Inga said "We all have them." she meant to include all normal people w/o any electrical malfunctions requiring PM's.

Remember a para or so ago I mentioned it was nearly 25 yrs between my first SENSED PVC & getting a PM? there's your proof that it happens to normal people (I know, who said I was normal?) Yes, Inga meant we as in the general population.

Yes, the wimpy beat is ALWAYS first - it comes early (Premature) so the Ventricles have not filled to their optimum level w/ blood for pumping, masking them wimpy. Inga once sent me an example of an ECG showing a PVC in a string of normal beats. The characteristic "Wimp, heavy, pause " pattern is clearly evident.

Hope this helps!

Don

Royale: You asked if...

by donr - 2013-07-24 11:07:17

...people w/ normal HR's have PVC's & I said "Yes."

Well today Wife was in for some minor surgery & during her prep time they had her hooked up to a Pulse oxymeter. I was sitting there watching the monitor "BEEP!" w/ her pulse & suddenly - guess what - she had a PVC. Right there in front of me. (Oh, I was just SO excited! )

The monitor went "Beep, beep, pause, beep. The time lapse between the first & second Beeps was shorter than in her normal string of beeps; the pause was notably longer.

See - I told you so!

Don

Had my appointment today

by Lkrager - 2013-07-26 06:07:42

So, I had my appointment this morning and you guys were totally right. He was like, you have a lot of PVC spikes I think he called them. And I was like, I know that word! :p And he did explain that its totally normal and probably because I am a totally normal 21 year old. He said that if I were to get 8 hours of sleep, stay out of hot weather, drink tons of water and no caffeine, I'd probably never have any. But since I'm 21 and living a normal life, I'm going to have them and thats okay. He said that my other symptoms, like when I'm working out and I feel like I'm dying, or the feeling like my heart is weak, or when I get dizzy - he thinks are from the medication they have me on. So he wants me to start tapering off tonight. I'll go back in about a month to get an echo done to make sure nothing else is wrong but he is confident its the medication.

So thank you guys for all the information! :D

Isn't it great that...

by donr - 2013-07-26 11:07:02

...your MD agreed w/ us?

Now that we have the PVC's behind us, a couple questions:

1) Why did you get the PM?

2) What meds are you on?

Glad we wwere able to help you out.

Don

They did agree with you! haha

by Lkrager - 2013-07-27 11:07:04

I have a cardio team - which is my Dr, 2 nurse practitioners and a nurse. All of them said it was PVC, so you guys were right! haha

In March, March 27th to be exact, my friend thought that I had a seizure, (I pass out quite frequently, they told me it was Vasovagal Syncope, since I was about 6 years old) so he convinced me to go get seen at the hospital. I hate hospitals. But I went. The Doctor didn't believe that I had one, like, she questioned my friend over and over about exactly what I looked like. I was like.... I didn't fake it! But, they had me hooked up to a heart monitor, and they came in, got some blood, left....and a few minutes later I was unconscious and my heart monitor was flat lined. I was out for 16 seconds. Everyone in the ER was flipping out. I mean, every doctor and every nurse in the ER was at my door or in my room.... And she thought I was faking everything? Ugh still irritates me lol.... Well, this was 5 in the morning and I was away at school, so I had to call my parents and they each had mild freak outs haha....not too often your 21 year old daughters friend calls up and tells you that your daughters heart stopped, I'm sure. So they sent me to a bigger hospital known for heart stuff, and they had me stay for 3 days. Ran all sorts of tests and couldn't find anything wrong. My echos were good, EKGs were fine. Nothing. So they sent me home and told me to increase my fluids and my salt and wear compression socks.

I did all of that. To the T. And I got a second opinion that said the same thing, because no one wanted to put a pacemaker in an otherwise healthy 21 year old. April 17th, I'm in my dorm room by myself, I start to feel really funky so I get up to fill up my water bottle, thinking maybe I just haven't had enough. The next thing I know, I am waking up face down on my floor. I remember looking at the clock before I got up and it was 1:23 and I remember looking at it when I woke up and it as 1:25... so, idk what happened in that time, but I woke up so thats all that counts. Well, needless to say I got rushed back to the hospital - a different one this time - and in the ER, the doctor was like, it was just a fainting spell, you will probably be discharged later. Well, apparently my cardiologist from my second opinion found out I was in the hospital and had me admitted. 2 days later I was in surgery to get the pacemaker.

So thats basically my "why do I have a pacemaker" story haha

And I was on metroperol... I didn't spell that right. But its a beta blocker, cause my heart either likes to go REALLY fast, or REALLY slow. So, the pacemaker keeps it from going too slow, it paces me at 60 when I need it or it does rate drop if I'm about to have another episode, and then the beta blocker keeps my heart rate from going too fast. At my first couple check ups I was only using the pacemaker 2% to 7% of the time, and at my last appointment I was using it 17% of the time. So, idk whats going on with that. But yeah, thats me in a nutshell! haha

Not Funny At ALL!!!!!!!!!

by donr - 2013-07-28 01:07:42

That, Ms LKrager, is not a criticism of you at all, but social commentary on the system that let you down.

We hear stories exactly like yours all the time & it is sad that it happens that way. Here's why:

1) the crap about not wanting to put a PM in someone as young as you (21).. Tracey Eller, one of our Mods had that happen to her - for an example w/ a name attached. Many others have the same tale. Most of them are women, just like you. They were extremely lucky (Just like you) that you survived long enough to get the PM. There is no such thing as "Too Young"! Try being just days or hours old when you rec your first PM!

2) Not slapping you into the hosp when you had the event while on the monitor. At that point, someone surely knew EXACTLY what was going on w/ you. And all those witnesses!

3) There's a fair chance that the metoprolol is the culprit for the way you feel. You may or may NOT need it. Too early to tell. But at least your cardio is willing to accept that the meds might be the cause. Metoprolol is notorious for side effects. For that matter, just about every heart med is bad about side effects - that's one reason there are so many different meds out there.

Come back if you have other questions. You are in good hands at the PMC.

Don

Lacey: That's why we are here!

by donr - 2013-07-28 11:07:06

What happened to you is a sad commentary on treatment - especially of young women.

You are well authorized to be in a skittish stage - you only have one heart & it must function 100% of the time (essentially) for you to live. What happened to you was rather dramatic & caught your attention. Also scary! It will take a while for you to get over that situation.

There are very significant psychological problems that can easily accompany heart problems like ours. They are as real as the physical ones that accompany/trigger them. I invite you to read a lot of our threads & see how many people suffer from the psychological issues - essentially anxiety , stress & FEAR. Coping w/ them is sometimes harder than the physical aspects.

You are EXTREMELY lucky if your Cardio was wiling to talk openly about you being afraid of it happening again. It sounds to me like he is willing to accept & recognize the psychological stuff & help you deal w/ it. Too many do not, cannot & will not take that responsibility & in my book, that is a significant part of treating PM Hosts. As I have told my Cardio many times, treating hosts heads is as important as treating their hearts. In this environment, the mental is to the physical as three is to one. (Not my saying - originated by Napoleon back about 1800 as one of his "Maxims of war." But just as applicable to medical issues.)

Keep coming back if we can help.

Don

Thank you

by Lkrager - 2013-07-28 11:07:57

Thanks for saying that. Its nice to know that there are other people who have had the same thing happen to them. It really scared me! And my cardiologist, who is actually a super great guy. He will explain things 400 times until I can recite it back and make it make sense to myself...which I need because I don't do well with uncertainties. But, he said that he thinks I'm still in the "skiddish" phase, where I'm afraid that its going to happen again. And I kinda wanna laugh in his face and be like.. WELL, had you guys not let it happen twice, I probably wouldn't be so scared! But... it is what it is I suppose.

But thank you for talking with me and answering my questions. I really appreciate it, really!

Thanks, Don.
Lacey

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