First Time Here - Question

I was really glad to find this site. I thought there has to be something like this out there. I have a couple of questions but first some of my story- the short version. I have a Medtronic pacemaker model ADDR put in on December 18, 2006 and I am feeling much better. I had spent the previous 18 months knowing something was wrong and doing a doctor route that only added to my fatigue. Why was this so hard to diagnose? I was diagnosed on December 11th with heart block 3. My heart was not just slow- it was stopping for up to 8 seconds the monitor showed. My quality of life was pretty close to none. I woke, worked, slept – that was it. The morning after I had the pacemaker I felt like I was alive again. I am 45. I still do not have a reason why or a diagnosis. They are calling it congenital- I don’tknow if i agree- my symptoms had a starting point and I did not grow up with them, and no family history. They looked at Lymes and Sacoidosis- both seem negative.
Do you all have a reason for your heart’s electrical issues?

The reason I am writing is that I have been feeling strange of late. It feels like my heart is missing beats and then it gets real fast and strong. I have gone to the cardiologist he says it is not the pacemaker – he put a heart monitor on for 24 hrs and I did not have it (of course). He did not read the actual pacer info.

I felt a bit spooked but after some thought this is what I come up with I think my heart is missing a beat, then the pacer takes over, my heart misses and again and some inner program takes over my heart function for a while. I assume my heart can still miss beats with a pacemaker? I recorded the dates and times a few times can they check this on the pacer checks? I think it is “normal” or another idea after reading some of your input is that maybe the electrical stimulation is set a bit strong. Any thoughts? It happens when I am at rest.

One other thing- does anyone’s pacer site sometimes-just ache? It seem like if I am tense of straining my upper body the muscles spasm yet around the site? I asked the dr. about this and he said it was nothing. It is something, I would like to know what.

Sorry so long.
Thanks,
Tom


9 Comments

Thanks

by TSA - 2007-11-28 01:11:17

It is good to find good people who care. I was begining to get a bit (lot) frustrated just talking to Drs.

I learned another interesting thing here that helps me not feel so crazy. When I am riding or driving on a bumpy road I often feel like my heart is going out of my chest. I see the PM can be detecting that as increased activity - the Dr did say mine is designed to respond to activity, body temp, etc. Is there a way to find out more about the Medtronic units? The little phamplet from the hospital told me almost nothing. I was online but did not see these kind of details.


PS I like how you refer to your pacemaker birthday!
Tom

Hi Tom

by Shelly - 2007-11-28 02:11:04

Welcome to this great site!

Can't answer your PM queries as I just got mine, but am interested in your pre-PM experience as it's similar to mine.

I had my first PM implanted on Monday and like yourself, it was for complete heart block. I too have spent the last few years feeling that 'something' was wrong, but being brushed off by my GP. Thanks to a vigilant practice nurse and new GP I finally got my diagnosis and now my new PM.

Anyway, I asked my cardio on Monday before my op if he knew what the cause was (tests show my heart is working normally apart from the block slowing my heart rate). I too was told it was probably congential, but they cannot say for certain, so like yourself I'm not 100% sure as I had no symptoms as as child either.

You say you had a starting point for your symptoms, but do you think you may have had very minor symtoms that you didn't realise were symptoms? The reason I say this is that I would say my symptoms started about 3 years ago, but looking back 10-15 years ago, I could feel my heart pounding some mornings if I had a bad night's sleep, and on the cardio machines at the gym my heart rate was always pretty low even when I'd running for an hour and was hot and sweaty!!!!

I think the cardio's guess is correct and mine is congenital. Maybe the heart has a way of coping for many years then the coping mechanism gradually wears down and that's when we get symptoms. I've no idea really, not a doctor, but that's my brain's way of making sense of it all.

I agree that it would be nice to know for sure, but I doubt we ever will.

Shelly

Different symptoms

by NH - 2007-11-28 02:11:52

Some of the things I have are very similiar to yours. I guess we all have some sort of little flutters and such. I have had a pain at my PM site but it is not severe and doesn't last long. I was told this was nothing to worry about.

Drs. don't tell you much and they don't explain a lot. I have not had any major problems and the PM has made my life normal. I would be at best an invalid if I did not have my PM. I thank God for the blessing of my PM.

Welcome to the group.
Take care,
NH

Welcome

by hooimom - 2007-11-28 09:11:12

Hi Tom,

Your story sounds a lot like mine. At 42 I was diagnosed with AV block after 18 months of being told I had asthma. Nothing seemed to help and I switched doctors and they quickly diagnosed the block. I got a PM less than a month later. I felt great for about a year and then started with sensations of missed beats and shortness of breath. After wearing a 24 hour holter monitor a few weeks ago, I am now wearning a 14 day CardioNet monitor. Hopefully that will show something. My EP thinks it is something other than a cardiac issue or my PM but I don't know. My PM interrogations show no problems but it just doesn't feel "right".

I was tested for lupus and a few other possibliites because they thought it was odd I would have this problem at such a young age (although being on this site has shown me it is far from rare). Nothing has shown up on any tests so they think it is a congenital defect. It was explained to me that when we are young our hearts are strong and can compensate for our problems but as we age it becomes more difficult and the defects become symptomatic. Like Shelly, I can look back now and see episodes 10 or 15 years ago but they were rare. By the time I got my PM I was so exhausted and felt sick all the time and I could barely keep up with my life.

Talk to your doctor about a longer monitor. I have heard of some on this site wearing them for 21 days. If my 14 day monitor doesn't show anything I am going in for different testing, but we wanted to start with the least invasive.

About the ache, if I lift things I get pretty sore. Some repetative movements can also cause achiness. It is not as bad as it used to be. I don't know if I have just adjusted to it or if it has actually improved.

Keep talking to your doctor if you are worried about your symptoms. Only you know how you feel!

Michelle

HI

by Janice - 2007-11-28 12:11:06

HELLO TOM,
WELCOME TO THE CLUB! YOU WILL FIND ALOT OF INTERESTING AND RELIABLE INFO. HERE. I FIND THAT MY SITE ACHES SOMETIMES. I'VE ONLY HAD MINE SINCE SEPT., BUT I GET FUNNY LITTLE FLUTTERS SOMETIMES, I THINK IT IS THE PACEMAKER KICKING IN. MY PROBLEM TOO WAS MY HEART PAUSING. THEY DIDN'T TELL ME MUCH, ONLY THAT IT WAS MY ELECTRICAL SYSTEM OF MY HEART. I ASKED IF I WAS BORN THAT WAY, AND THEY SAID PROBALLY NOT. MY MOM HAD ALOT OF HEART TROUBLE, SHE IS GONE NOW, BUT I THINK ALOT OF HER TROUBLE SHE HAD FOR YEARS, BEFORE THEY FOUND IT. SHE TOO HAD A PM, AND THEN ENDED UP HAVING TRIPLE BYPASS AND AN ARTIFICAL VALVE PUT IN. SHE DIED TO UNRELATED CAUSES. I'M GLAD YOU'RE FEELING BETTER. TAKE CARE

hi tom

by jessie - 2007-11-28 12:11:33

welcome to the club. i am glad you find us. i did a little questioning when i was impalnted as my brother had to have a pacemaker at 52. i remebered something my mom long deceased told me. i was the only girl in the family so she told me things she didn't tell the boys. before i went to school my brother 2 years younger and myself had rheumatic fever. it was common during ww11 and it was because people did not have central heat and lived in close damp quarters. that would be us but i don't remember. my brother who was 2 at the time suffered with heart problems at birth and he was a sickly child. he was operated on at 15 for heart valve issues. me i was okay altho i always seemed to need more sleep and this continued thru my life. low energy. so to make a long story short the cardiologist thinks my electrical system failed due to the effects of rheumatic fever. i was always told i had a heart murmur but not too worry. i wonder now. so tom also i seem to miss beats. my cardiologist is not worried and says it is the pacemaker taking over. i fele good live good and i am so grateful to be here. hope this helps jessie

Good Points

by TSA - 2007-11-30 08:11:16

It is good to "talk" to you guys. Shelly, you are right I cannot rule out "any problems" earlier in life. I have had asthma since birth. I had the same feelings as Michelle- by the time they found it I could not do much of anything. I liked what someone said - we all have "flutter and such" and I guess that is to be expected as we have a devise and not jsut our natural heart.
I am looking forward to a great weekend in Lancaster PA.
Tom

I have a medtronic pm 2!

by uvagershwin - 2007-12-19 02:12:46

Hi! This is Sydney, another new member. I am 13 and have had my PM since I was less than 24 hours old. I have congenital heart block. I was really glad to find this site too. Welcome!

Hope I can help

by Whitman.family - 2008-01-05 11:01:13

When this same thing would happen to my husband it was because of the programming. Push the issue with your doctor and don't let them tell you that you're fine. PMs need to be fine tuned to work best with your body. It's possible that your rate during the day is set too high. For instance, with sick sinus your heart beats slower than normal. Your body was used to this slower rate until you got the pm. Now you're expecting your body to adjust to this faster rate which is probably about 60bpm. My husband had to have his set at 49bpm and the strength of the pulse that would beat the heart wasn't as high as normal. We would always know when hims pm would reset because it would start to feel the stomach aches and dizziness. He would go back to the dr. and have it reprogrammed. He would still have problems because there was only one Pm technician that really understood how his pm worked in his body and as long as she programmed it he didn't have problems.
As far as the jolt up by your shoulder. I don't know if it would be similar, but my husband started having problems with his whenever he would swing a club while golfing. I don't buy the notion that this was the pm shocking the heart because if you look into pms you'll find that pms shock and such a low pulse that they are almost undetectable to feel. Defibs are the ones that have the ability to shock a jolt that makes you jump.

Please please push the issue with your doc. This is your body and you know what's best. And take it from my and my husband, it's possible to have it set correctly.

You know you're wired when...

You have a $50,000 chest.

Member Quotes

In fact after the final "tweaks" of my pacemaker programming at the one year check up it is working so well that I forget I have it.