Horseride

Hi, my name is Denise and I am wondering if anyone in the club had the same situation as myself.

I was diagnosed with 3rd degree heart block at the age of seven - (I am now 55-years old) and have been avoiding having a pacemaker all my life. I had no adverse affects from my heart block - no fainting, no blackouts, no shortness of breath etc. However, as I got older, my heart rate became slower and I became quite tired in the mornings on rising......but thats all!

Following a 24-hou Holter test, my cardioligist informed me that my heart-rate was overall 35 bmp falling to 25 bmp during the night and subsequently suggested urgent pacemaker implantation - to which I (reluctantly) agreed. Now 9-weeks on I feel awful with constant shoulder pain, heaviness in the chest and get "strange little pains" coming from the heart area. I can't jog as I used to, or swim or play golf again yet, and now beginning to feel depressed. I'm sure it was the right decision to have the pacemaker but when will I feel well ???

Has anyone else experience the same or similar? I would be grateful to hear from them. Best wishes.

7 Comments

welcome!

by Tracey_E - 2010-05-14 05:05:03

You've come to the right place! There are quite a few of us here with CCHB who were diagnosed as children (5 yr old for me) got our pm's later in life. Our stories are similar, except everything that just happened to you, happened to me when I was 27. I'm on my 4th device now and feel pretty darned good.

Have you been back to the dr? The heaviness in the chest should be going away by now. The strange little pains can come and go for a while,it's just part of healing. If it's bad enough to take something for it or comes with dizziness, get to the dr. The shoulder- where did they place your device and were you told not to move your arm? I'm wondering if you have frozen shoulder. That can happen sometimes if you don't move your arm enough during healing. Physical therapy can help, but you'd need your dr to diagnosis it first.

The mental adjustment can be harder than the physical and feeling down is perfectly normal. Once you feel better and have more time to adjust, it should go way on its own. If it doesn't, or if you truly think you are depressed (as opposed to just a little down and frustrated), get professional help. Depression is a disease and it doesn't cure itself.

You can't swim or play golf because of the pain or your heart isn't keeping up? If you can't do full activities, taking walks might help. Something to burn some energy and get some fresh air might help you feel better about everything.

If you have questions or just want to vent, there are a lot of us here who have been there!

Getting Help

by J.B. - 2010-05-14 06:05:45


I had some of the problems you mention and you are not the first one I have seen complain of similar symptoms after a pacemaker implant. At 9 weeks it is as good as it is gong to be unless you get some help from your doctor.

I'm not a doctor but I think the first order of business is to get a checkup on your pacemaker by some one that knows what they are doing. Sounds like settings changes are in order. That could very well stop everything but the shoulder pain and possibly heaviness in the chest . As for the strange little pains, that may take little while, but they too can be corrected. As for the SOB, it certainly should not be worse than before the PM so ride the Dr until he provides the help you need.

Back to my comment about getting some one that knows what they are doing to do a checkup on your pacemaker. Sometimes that is more difficult than you would believe unless you know where to look. The doctor that did the implant and/or the nurse/technician that does the checkup should know what they are doing but there is no guarantee of that. If you don't get the relief you need after one of their checkups ask to have a manufactures representative perform a checkup. If that means going to another doctor so be it. Just remember your problem is not likely to correct itself.

Good luck to you.

Pacemaker beat too strong

by Horseride - 2010-05-14 08:05:43


Previous to my implant I suffered from bradycardia. When my PM was immediately implanted, I found the new faster heartbeat of 60 per minute too strong for my slow system to bear. I was in a lot of discomfort and distress so the hospital where my Operation was carried out, had to call in a Pacing Technician to "turn the rate down" to 45 beats per minute. I kept this rate for one month, and was then 'turned up' to 55 per minute - which is now my current paced heart rate.

Has anyone else had this problem with the pacing beat initially being too strong?

Thanks and best wishes
Horseride

pacing

by Tracey_E - 2010-05-14 08:05:46

If you have 3rd degree block, the lower limit should be irrelevant because your sinus node is setting the pace. Your atria is beating the same rate is always has, but now the pm is making sure the ventricles beat at the same time. Before the ventricles just beat when they were in the mood to beat, regardless of what the atria was doing. It's possible your atrial rate was really low also, in which case turning the rate down should help you feel better. They're usually really hesitant to leave it under 50.

I felt like my heart was racing at first. My hr went from 35 to 80-85, it was like being loaded up on several pots of coffee and it always felt like it was racing too fast. The feeling goes away with time! If I were to go back under 60 now, I'd probably be fussing that it was too low.

The above is all too fast. There is also beating too hard. They usually leave the voltage up a bit high the first 1-3 months until the leads settle in and your heart gets used to pacing. You shouldn't really feel it, but some do. They can turn it down after your first check.

pacing

by JasonP - 2010-05-14 11:05:10

Hi Denise,

I'm newer here too and, along with TraceyE and others, it sounds like we have similar stories. I was paced on 4/30. You can see my info here:

http://goo.gl/mGTw

My recovery so far has been pretty text-book and I've not experienced the complications you mention. As J.B. says, it sound like something might need addressed.

For what it's worth, though, don't overlook the mental adjustment aspects of the procedure. I was asymptomatic and got my PM as a preventative measure about 6 years after it was first recommended and obsessed endlessly about whether to do it or not during those years. By the time I did it, I knew exactly what to expect and had throughly researched every angle. By the time of my procedure it was more a relief to just get it behind me. That was not the case for you. It sound like it was somewhat sudden and unexpected.

Good luck.

Hi

by Genie - 2010-05-17 12:05:58

I'm only seven weeks in and know exactly how you feel: I've been really depressed, am sure I have frozen my shoulder, and really am desparate to swim again.

TraceyE is right: walking really helps. Just getting out and breathing fresh air, and thinking by myself has really helped me.

And chatting here has kept me sane: people have answered my questions, no matter how many times they've been asked before, or how often I posted. So don't be afraid to keep coming back.

I had my first really good day today, after my pacing check, which I posted about. 9 weeks in, have you been back to the cardiologist? Is everything working as it should? If you can find some positives to focus on you'll see how you are slowly getting back to normal, and you'll feel better. Just last week I was posting about how miserable I was, and now I am telling everyone about my good day. You will too. When I asked people on the site whether I should still feel stressed after seven weeks they said it was really only a little bit of time, and that you have to give yourself time to heal. I really needed to hear that: I was putting so much pressure on myself to feel well and it was making me fed up. So I hope I can give this gift back to you:

You are getting there. It's not been long. It will get better. Give yourself some time and you will heal.

Genie

Newbie

by ctjaden55 - 2010-05-19 06:05:47

Hi all! Just got my PM on 5/13. Is a dual lead. I was diagnosed with TachyBrady Syndrome with pauses. I was tired all the time. I had an EP study done the week before....that was not fun by the way. I went back to the ER 3 hours after my discharge with chest pains....freaked me out...didn't really have an answer and sent me home. Probably pain from the surgery. Anyone else have chest pains after? I am very sore at the sight but feel better....getting restless..will go back to work half days next week. I have been reading these postings and have found them very helpful. My PM was set at 70 minimum. Previously my heart rate would drop into the 30's and then up to 120's. So I am looking forward to feeling better finally. Hoping this is a Godsend. Just wanted to introduce myself and say that I am grateful for having insurance to pay for this and also there is a sight like this to support us bionic men and women out there.

Carol

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