Pacemaker recipients: Looking for support from others

Posted by balubeje @balubeje, May 25, 2016

I am coming on a year post op having a pacemaker placement for bradycardia. I would be interested in a support group with the same concerns. I think a support network would be so beneficial.

Liked by Solo Act

Hi @regeanna,

I moved your message to this discussion in the Heart & Blood Health group so that you can meet Connect members who may share similar experiences.

I’d like to introduce you to a few members who’ve posted about various forms of tachycardia; @jigglejaws94 @vdouglas @lelorrain @jimana @jhoffmanj @nadine66 @martishka @jennybell1 @sotiredofit @topaz do you have any suggestions for @regeanna?

I hope @balubeje @ronbee @marke92 and others in this group will return to share their insights, too.

@regeanna, has your doctor given you an explanation for this occurrence? How often and when do you notice that these bouts occur?

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I’m afraid I don’t have any insights on this particular concern.

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Just saying “hello”. I hope others in your situation can chime in and that you are able to gain some information. I personally don’t really have any experience with that.

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Hello @regeanna, I have had bouts of Tachycardia which are now controlled with Beta blockers. Ablation was a consideration for me only if the Ventricular Tachycardia could not be controlled with the beta blocker. Beta blockers are not the answer for everyone.

My Tachycardia was associated with Mitral Valve Prolapse. I have been taking beta blockers for around 32 years and have only an occasional runs that I can feel. I have PVC’s continually and have for the most part learned to ignore them.
Good luck, I wish you the best. Heart rhythm issues are not fun at all.

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@vdouglas Thanks for your input. Teresa

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@vdouglas

Hello @regeanna, I have had bouts of Tachycardia which are now controlled with Beta blockers. Ablation was a consideration for me only if the Ventricular Tachycardia could not be controlled with the beta blocker. Beta blockers are not the answer for everyone.

My Tachycardia was associated with Mitral Valve Prolapse. I have been taking beta blockers for around 32 years and have only an occasional runs that I can feel. I have PVC’s continually and have for the most part learned to ignore them.
Good luck, I wish you the best. Heart rhythm issues are not fun at all.

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Hello V.Douglas,                              Thanks for telling me your story, it really helped. I have been wondering if this NSVT is a sign of worsening CHF guess I will find out when I go back to the cardiologist. Your right it's no fun, but I'm  still hopeful  things will get better, I hope the same for you. Thanks again and take care!

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@hopeful33250

@vdouglas Thanks for your input. Teresa

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You are welcome, thanks for saying so.

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@cupcake1979

I had a pacemaker dual chamber in January due to my heart stopping. I have since in the last 10 days experienced low blood pressure tachy. I was placed on beta blocker which landed me in the er due to heart rate dropping to 47. Echocardiagram comes back normal also blood test along with ekg. I am currently experience constant chest pains, migraines, shortness of breath and weakness. Can anyone shed any light

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Hello @cupcake1979,

Welcome to Connect; I’m so sorry that you aren’t feeling well, and we’re glad that you’ve joined us.

We have an active discussion about pacemakers (and heart rhythm issues), which you may wish to see:
– Pacemaker recipients: https://connect.mayoclinic.org/discussion/pacemaker-recipients/
If you wish, you can post your concerns in that conversations as well.

Meanwhile, I’m sure that Connect members @balubeje @ronbee @jimana @martishka @billmichalski @sotiredofit @ricke62 @catygirl @bevtar98 @marke92 @bibi12 will return to share their experiences with you.

@cherfenn @oldkarl @incrediblemulk98 have discussed heart rhythm issues like tachy-brady syndrome (sick sinus syndrome), and I wonder if they have more insight to offer?
Here’s some information about sick sinus syndrome from Mayo Clinic: http://www.mayoclinic.org/diseases-conditions/sick-sinus-syndrome/basics/definition/con-20029161

@cupcake1979, since you mentioned, “…am currently experience constant chest pains…” may I ask if your health care team has ruled out any coronary blockage? Are you able to take a lower dose of the beta blocker?

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@cupcake1979

I had a pacemaker dual chamber in January due to my heart stopping. I have since in the last 10 days experienced low blood pressure tachy. I was placed on beta blocker which landed me in the er due to heart rate dropping to 47. Echocardiagram comes back normal also blood test along with ekg. I am currently experience constant chest pains, migraines, shortness of breath and weakness. Can anyone shed any light

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Just a few small things. First, exactly where in your chest do you hurt, and what does it feel like? Morie Gertz, of Mayo-MN, in “Amyloidosis –Diagnosis and treatment” points out that a line of pain between the point of the shoulder and the nipple often shows a sick spleen. A heavy pain in the center is often the heart, or a problem with the sternum. I had some success with my tachy-brady when I had a full course of EECP. It is painless, and did help after a few months after treatment. I doubted it at first, but eventually came around when the bad stuff eased. I still have some, but not nearly as bad. My pulse runs from 45-153 on any given day. It was running 40-175 while resting.

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During a botched oblation for tachycardia I was put into heart block, which necessitated a Medtronic pacemaker. Then a small loose part caused pericardial bleeding and we had to do another pacer. After all that drama in 2012 and the fact that I felt like they destroyed my heart, it is a traumatic memory yet today. And I regret having agreed to an oblation. I still needed another sinus node oblation but had that in MN.
Mostly all is well now except for three things: 1) when washing under my left arm or applying deodorant any jiggly movement will set my heart rate racing 2) same when walking and hitting a bump or hole 3) same thing happens when I clap my hands as in applauding.
If my pacer were to be set lower there would be too much of a lag in adequate response for say, biking or swimming.

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(shortshot80) Nancy To: lakelifelady)
Wow! Sorry for all your troubles, but with all the problems ending with the pacer, What would it have been without it? My husband and I were in Arizona for the winter, I fell in the back of the pickup, lost of a lot of blood (nose bleeding) Lady next door cleaned it up, told me as a surgery nurse she hadn’t seen that much blood and to check with my doc. So went is and had all checked. What do you know? The holes in my heart (everybody has them) Well mine never closed as a kid. At 73 years old the doc’s put in a pf occuleder in my heart which changed the blood flow. I was lucky that the doc’s found the problem.
After the surgery I felt much better. As a kid I often told my mom that my “heart” hurt.
A little over 10 years ago, I was on meds to keep my heart running, they tried for four days to regulate and start new meds, I ended up with a Meditronic pacemaker. I am now sending by phone every three months transmittance of my pacer. I think that maybe I will have a new one in the next six months. Doc tells me that I won’t be in the hospital very long, two or three hours and with just local numbing meds. That is way different than when I first received the pacer. y! I am now 84

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@cupcake1979

I had a pacemaker dual chamber in January due to my heart stopping. I have since in the last 10 days experienced low blood pressure tachy. I was placed on beta blocker which landed me in the er due to heart rate dropping to 47. Echocardiagram comes back normal also blood test along with ekg. I am currently experience constant chest pains, migraines, shortness of breath and weakness. Can anyone shed any light

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I am always intrigued with those of us who have received Pacemakers and our symptoms and reasons for our new best friend is as individually based as we are unique. Personally, I think it takes time for our bodies to adapt and adjust to the PM. Our heart has been fatigued for so long and use to doing its on rhythm now that an insert has been placed to help and assist I’m wondering if time and medication adjustments are apart of the equation. I’ve not had constant chest pains or anything that I would call chest pains. My symptom is more like a congested freeway at times and now those times are few and far apart. By this I mean who’s in charge the PM or the heart once they figure that out life is good. Once I learned not to dwell on my PM life has been more normal. I’m pretty regular on working out several times a week and I find that most helpful. The reason I have a PM is due to bradycardia and having 6 second pauses. I have a new normal and we hit two years in June.

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@lakelifelady

During a botched oblation for tachycardia I was put into heart block, which necessitated a Medtronic pacemaker. Then a small loose part caused pericardial bleeding and we had to do another pacer. After all that drama in 2012 and the fact that I felt like they destroyed my heart, it is a traumatic memory yet today. And I regret having agreed to an oblation. I still needed another sinus node oblation but had that in MN.
Mostly all is well now except for three things: 1) when washing under my left arm or applying deodorant any jiggly movement will set my heart rate racing 2) same when walking and hitting a bump or hole 3) same thing happens when I clap my hands as in applauding.
If my pacer were to be set lower there would be too much of a lag in adequate response for say, biking or swimming.

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Your post makes me so happy that the ablation I had for a single PVC site was successful. I had them so very bad, 20 time a minute, that I was refused to donate blood. Mine went very well. My EP kept me in hospital overnight as he does with all his patients and have not had any repeat offenders. I too have a Right Branch Bundle Block, however I have no idea what I should be seeing in the way of symptoms, I just know this due to it being stated in my records and the EKG readings I often get to see. My cardiologist keeps telling me he thinks I need a pacemaker, but I keep telling him I really don’t yet need one.

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@lakelifelady

During a botched oblation for tachycardia I was put into heart block, which necessitated a Medtronic pacemaker. Then a small loose part caused pericardial bleeding and we had to do another pacer. After all that drama in 2012 and the fact that I felt like they destroyed my heart, it is a traumatic memory yet today. And I regret having agreed to an oblation. I still needed another sinus node oblation but had that in MN.
Mostly all is well now except for three things: 1) when washing under my left arm or applying deodorant any jiggly movement will set my heart rate racing 2) same when walking and hitting a bump or hole 3) same thing happens when I clap my hands as in applauding.
If my pacer were to be set lower there would be too much of a lag in adequate response for say, biking or swimming.

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shortshot800 Nancy……..Eileena, you didn’t say how old you are but it doesn’t make any difference. I received my pacemaker when I was
73. Now I’m 84 and I feel great and am glad I have it. I just got through with five sessions of radiation for the cancer in my right lung. I also
have cancer in my left lung that nothing will cure. I figure that if my cardiologist tells me that I need a pacemaker, I am paying him to take care of me, maybe he could be right and I would have it done. That is what happened ten years ago. Just a thought, perhaps your doc is right! Not doing what your doc says could be a costly mistake. Food for thought.

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@lakelifelady

During a botched oblation for tachycardia I was put into heart block, which necessitated a Medtronic pacemaker. Then a small loose part caused pericardial bleeding and we had to do another pacer. After all that drama in 2012 and the fact that I felt like they destroyed my heart, it is a traumatic memory yet today. And I regret having agreed to an oblation. I still needed another sinus node oblation but had that in MN.
Mostly all is well now except for three things: 1) when washing under my left arm or applying deodorant any jiggly movement will set my heart rate racing 2) same when walking and hitting a bump or hole 3) same thing happens when I clap my hands as in applauding.
If my pacer were to be set lower there would be too much of a lag in adequate response for say, biking or swimming.

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@shortshot80

I’m 67. I do not want a pacemaker yet. It is a future thing, but the doc knows eventually it will be done. I had a quad bypass on 7-24-15, almost 2 years ago. i go to Scripps Clinic and he is one of the youngest ones there, some liken him (at the last heart failure group meeting) to Dougie Houser as he is so very young. He is gifted beyond his years.

Last year I began taking a supplement used world wide for heart failure, but not prescribed by our own AMA docs. it is Hawthorne Solid Extract, a viscous liquid, not a solid like a bar of chocolate. My cardiologist is aware I take hawthorne. After I began taking that supplement my left Atrial went from severely dilated to moderately dilated. So…as you see, it is not yet time for a pacemaker.

I climb stairs, today I managed 10 flights, these are at work, I could take the elevator, but find it is not reliable. I only climb them so I can get to my shop, so I can go get some hazmat needed to do jtasks and th chemical is kept on another floor. Some days I manage 11,000 steps according to my step counter. And last year did the 4.1 mile Heart walk her in San Diego, but this year I will do the shorter one.

His and my concern is that my heart rate drops to 36 after I manage to go to sleep. But…I have bradycardia, with a resting rate of around 45 BPM, so dropping 9 BPM when I go off to sleep is not as bad as what you might be thinking. One of the things that drags my heart rate down like that is Coreg. It is known for slowing the rate in that manner, but without it I suffer bad migraines with aura, so caught between rock & hard place.

I am wondering about the actual size of a pacemaker and don’t want a large bulge on my chest as it makes me think it will look like I have a third boob. Please don’t laugh at me, but just think about a bulge on the chest above my actual boob there. I guess I am a bit vain? LOL!

Thanks for your concern.

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