Wish I could have it turned off!

If II had known what this pacemaker was going to do to me I would never had it put in. My doctor said it would help me to live longer, but I feel I am no longer living. Since I had it put in my heart beats so hard. No matter what I am doing it still beats hard. I've had it "reprogrammed" several times but my heart still beats pretty hard.
Now I'm so tired all the time that I come home from work and go to sleep until the next morning. I have no life outside of work and sleep. Does anyone know when this is going to get any better?

5 Comments

2nd opinion

by Tracey_E - 2010-07-30 09:07:40

Why did you get the pm? Some people are more or less cured and feel better with a pm, some feel the same but they are safer. It sounds like something else is going on with you. A pm would not make you so tired, etc. I would get another opinion and see if the first dr is missing something. You most definitely should not feel worse than before you got it! All a pm should do is add beats when your heart is too slow or irregular, that's it. Good luck!

One more thing....

by Pookie - 2010-07-31 02:07:02

I also wore a holter monitor for a month and found out that I have Junctional Rhythm. Have you asked to be tested with one of these, if not, perhaps that is something you could do.

The Junctional Rhythm is what was causing the thumping and hard pounding of my heart.

Again, never ever ever give up.

Pookie

I had a similar problem

by Pookie - 2010-07-31 02:07:34

Hi.

I had a similar problem...my heart would thump & pound really hard (not fast) - sometimes for a minute, sometimes for hours on end. And this would occur if I was going up the stairs (for example) or doing nothing at all like just sitting and watching TV or even laying down in bed!!!!!!!!

I also was profoundly exhausted. All I did was sleep.

The answer for me was finding an EP who would listen.
And a smart pacemaker tech.

What they did for me was in the Optimization, which I think is related or part of the Rate Response.

Optimization can either be ON or OFF.

Sorry, but I can't remember what mine is right now without digging through bundles of medical paperwork.

Perhaps you should bring this up to your doctor or whoever "interrogates" your pacemaker.

It made a world of a difference for me. I too was to the point that I just wanted to get this pacemaker out of me because I was not living, I was just existing.

Another thing I did WITH the consent of all my doctors was I added 250mgs of Magnesium to my diet and the thumping and pounding of my heart went away.

So, the combination of the Optimization setting and the Magnesium gave me my life back.

I am not at 100% but I would say I'm at 88%.

There is an answer to your problem, you just have to be relentless and find someone who will listen to you. It took me 5 years but it was well worth it.

Oh, and another HUGE thing that helped me the most (I can't believe I almost forgot this) was I got rid of my regular coffee and went to decaf........if you drink coffee, try changing to decaf and see if your pounding heart will improve...mine did!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Sometimes it's the littlest things that make the biggest change in our lives.

Don't give up hope.

Pookie

wish i could turn it off

by keveri - 2010-07-31 03:07:44

today i can say i am finally feeling good, getting my mojack back.. i had your symtoms and more. i would fill up with fluid, sometimes 5-6 lbs over night and sleep for hours. i only felt good in bed.
i had ablation, pacer in april 2010 and all i did was sit around and wait to feel better. i had pacer tweeked a few times with no avail. i was tired all the time, slept 10-12 hours a night/ day and that is if i could fall asleep. i finally decided i was going to research all my meds. i was on xanax for fear and insomnia. but as i kept taking them i was getting more fear and insomnia. so we tapered off them. read the side affects of xanax and how detox is as difficult as cocaine. i had a horrible time of that too.. i am on coumadin as i had mital valve insert 5 years ago.during that surgery they said they had ablated some areas. i had the davinci robot do the valve.
i have been on toprol 50mg am and pm for years as i have had atrial fib for years even after the mitral valve replacement. i would try to get up and about and could not bend over without pressure in my neck and head and the loud pumping of blood in my chest and head. breathlessness which i have never had and episodes of congestive heart failure which i have never had.
again saw the EP/MD who did my ablation and said i should be feeling really good by now. he suggested i taper off the toprol as i was taking that for the atrial fib which according to him was cured with the april ablation
good thing i retired as i could not have continued to work.
the EP said taper the toprol for 2 weeks and belieive it or not today is the first day of rest of my life. i can see the light at the end of the tunnel. i was not anywhere close to believing i would ever feel better. every day i was getting so depressed about not making any progress.
today was great. i walked a long distance and had no sob, chest pounding or head throbbing and my body felt strong and i was not feared. my body is starting to rid itself of fluid. i do belive i did not need the toprol after the ablation and no one had addressed it til now. how blessed i am today and praying for a good tomorrow.. i do feel free and i hope you will too. be a tough advocate for yourself. thinking of you jan

Watch what you eat too

by congabebe - 2010-08-02 01:08:11

Hi,
I have had heart pounding after tea, pizza, hot fudge sundae. So, I know I shouldn't be eatting these unhealthy things but I feel like I survived and I haven't been able to get motivated to change. I am not going to beat myself up, so I have cut back, made note of what makes me feel bad. So Decaf Coffee mixed with half-caf coffee seems to be ok. Decaf Tea is ok. I watch my sugar and salt intake, try not to overeat. I have been told that food allergies cause cravings and can make you feel tired and cause your heart to race. So make a note on what your are eating, something may be setting your heart off.
Good luck.

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