Hello pacers! A little Q&A about your pacemaker

~ Carolyn Thomas

by Carolyn Thomas  ♥  @HeartSisters

Here at Heart Sisters World Headquarters, I’m often contacted by readers with impertinent questions like: “Why don’t you ever write about ______?” (insert your own specific diagnosis here). One in particular was a 2015 reader question that read: “Why don’t you ever write about congenital heart defects?” On that particular morning, I was feeling tired, sick and “grumpy” (as our little Everly Rose calls every feeling she has that’s not happy). I wanted to snap back at this reader that I’m not running the Encyclopedia Britannica here. . .

But in a remarkable coincidence – and luckily before I had a chance to snap – on that very day, another reader named Aletha happened to share with me her own amazing story as an adult living with a heart condition she’d had since birth. That weekend, I ran my first ever blog post about this cardiac condition, called “When babies with congenital heart defects grow up“. 

And recently, a similar reader contact reminded me that I’ve never covered the topic of cardiac pacemakers – until now. 

There are many credible sources of clinical information about what cardiac pacemakers do and who needs them (the Ottawa Heart Institute, for example, has a solid patient-friendly guide).

Basically, a pacemaker is a small device that’s placed in the chest or abdomen to help control abnormal heart rhythms by using steady electrical pulses to prompt the heart to beat at a normal rate again. Sometimes, this little device is a dual-purpose lifesaver, functioning as both pacemaker and ICD (implantable cardioverter defibrillator). This cardiac resynchronization therapy (CRT) can be delivered as a pacemaker only, or in combination with an ICD. An ICD on its own continually monitors heart rhythm and can send low- or high-energy electrical pulses to correct an abnormal heart rhythm that might otherwise result in sudden cardiac arrest.

To learn what real heart patients are saying about real life with a real pacemaker, there’s no more practical Q&A overview than what is freely available from patients themselves.  Here’s just a sampling from a number of “pacers“:

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Extreme weakness after pacemaker implant:

Q:  I am a 59-year old female, had a pacemaker placement nine weeks ago. I am still so weak, it’s all I can do to manage basic tasks. I feel like I should be feeling better by now. I will see the cardiologist on Friday, hoping I can get some answers. They keep saying they are going to adjust the settings, but they have not done so. I am very disappointed in the progress that I have made in nine weeks. I am wondering have any of you pacers experienced weakness and fatigue this? Please tell me it gets better from here.

Answers from pacemaker patients:

  • That means your pacemaker is working the way it is programmed to. It does NOT mean it has been programmed to work in a way that is optimal for you. Many people do well with out-of-the-box settings, but others might need several adjustments before the settings are right.
  • It’s also possible that your settings are ideal and something else is going on. Either way, the problem should be addressed. The more specific questions you ask, the more information you get, and frankly, the more respect you get.
  • Your problem is not exactly rare. Nor is it rare to have one’s complaints dismissed. The one that ticks me off the most is: “Your pacemaker is working fine.”
  • I am your age and got my first pacemaker four years ago. Unfortunately, it took me 14 months to feel really well.  Now I feel great, but that first year was a bear. But please don’t be discouraged by my story!  I was improving all the time, but had hoped for something more dramatic, I guess!  I feel wonderful now, but I hated those early months.
  • Here’s what I learned when I knew my pacemaker wasn’t right but could get no one to listen:
    • 1. Be proactive. Get a copy of your interrogation report. Study it. Learn what your settings are and what they mean.
    • 2. Go back and ask for changes. Very simple changes like raising or lowering the base rate can make a huge difference to how you feel, as can a change in the response rate. Put your requests for change in the form of a question, e.g. “Do you think if we try raising my base rate from 60 to 65 I might feel more energetic?”
    • 3. If they truly don’t seem willing or able to address your issues, go somewhere else. I found out that if they can’t or don’t help me in a few visits, continuing to go back won’t help either them or me, and will only cause frustration for both of us. If you have few choices in electrophysiologists (the kind of cardiologist you should be seeing), go to a major medical teaching hospital, even if you have to travel. It’s your life. Don’t settle for feeling rotten.

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Sex after a pacemaker:

Q:  I had my pacemaker surgery done recently. Since then I have been very fearful of resuming an intimate relationship with my husband. He has been wonderful and so understanding, and I have always wanted to ask my doctor, but just can’t seem to bring up the subject. Does anyone have the answer? 

Answers from pacemaker patients:

  • There is no reason you can’t have a normal sex life after a pacemaker. Relax, it is absolutely fine! And it’s so important! I have had a PM for 20 years and had several battery changes. It never interfered with sex. You just need to wait two months to heal.
  • The stock answer is if you are able to walk up a flight of stairs, you can have sex. Also, you can take things nice and easy.
  • I can tell you it was a lot safer for me to enjoy sex after the implant than before! I only waited a few weeks. I did not use my left arm a lot for anything and followed the instructions about not raising my arm above my head. It was not a problem keeping my arm at the recommended height or below. It was a bit weird at first as my husband touched the incision area…. didn’t hurt, it was just a new part of me.
  • After I got my pacemaker/defibrillator, I found I was much more comfortable having sex with my husband. I felt more confident that he wouldn’t have to call 911 for me so I’m able to relax and enjoy myself!
  • We were supposed to WAIT???  🙂   If this is your first pacemaker, don’t swing on any trapezes and you should be fine. The pacemaker won’t make any difference at all. Have a great time!

Waking up in the middle of the night:

Q:  I have just had my pacemaker surgery a few weeks ago, age 39. I’ve been waking up at night very alert, and not sure why. Before my surgery, I was told that my heart was stopping for as long as 14 seconds in my sleep. Why is this happening?

Answers from pacemaker patients:

  • At your first follow-up appointment, they will check that your pacemaker is working okay, and may adjust settings. You should tell them about feeling alert at night. if you feel tired during the day, or find that you are short of breath at any time, they need to know this and may adjust settings.
  • It may be just because your heart is now working better.  There are several things they can adjust: from the minimum number of beats per minute (BPM) or the time delay between when the device triggers one chamber of the heart after the other. Think of it as fine tuning.
  • Tell your doctor about waking up at night, and if you can, what time you wake up. It is possible that if something is going on, it is being recorded. (Your pacemaker doesn’t record everything – only what it is programmed to).
  • Younger people like you (age 39) often are making more activity demands on their pacemaker than someone older and more sedentary. Sometimes younger people can benefit from having their settings tweaked so that they get optimal performance.

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Hot tubs:

Q: Is it okay to use a jacuzzi or hot tub if I have a pacemaker?

Answers from pacemaker patients:

  • Discuss with your EP (electrophysiologist) first. If he/she says no, it’s a NO.
  • It may not bother the pacemaker, but you have to be careful because of the heat and what it might do because of your heart issues. You also don’t say how long you’ve had the pacemaker and if the wound has completely healed. Obviously you don’t want to get into hot water with a wound that hasn’t healed.
  • For me, my blood pressure drops and my heart rate goes up, so I’m careful to monitor how I’m feeling, whether or not I get in and if I do, how long I stay in. Otherwise enjoy! Nothing better than a good soak!
  • Every morning, I go out to our hot tub and watch the sun come up. Then at about 9 p.m. I spend a while in it before I go to bed.
  • Depending upon your heart problems and medication you are taking, the heat from the spa could exacerbate your problems. So you want to be really careful.

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Heart rate too high:

Q:  I had my pacemaker surgery last week for Sick Sinus Syndrome and Chronotropic Intolerance. I’m 44. I love to run, so I was interested to see what the rate would be when I went for a walk (I’m not allowed to run yet). I started out slowly and felt my heart beating rapidly. I checked the heart rate zones after the walk and the average was 145 with a maximum of 175. I wasn’t walking fast and didn’t even get a sweat up. I usually get these results from a general run with hills. Isn’t a pacemaker supposed to make my heart rate work in the right zones when exercising?

Answers from pacemaker patients:

  • “Normal” may feel fast for a while. We get used to the slower rate, then when we have a normal rate again it feels too fast. It’s also common to take a few tries to get the settings adjusted correctly. No two of us are alike, so they’re not one-size-fits-all. Don’t be shy about telling your doctors that it’s not right.
  • Yes, it IS supposed to make your heart rate work in the right zones when you exercise. In fact, it likely WILL after you have had some minor adjustments made to the programmable settings which can be adjusted ranging from LOW (responds to minor activity) to HIGH (responds only to vigorous body movements and exertion)
  • It sounds as though your activity settings are too sensitive. It is an easy fix to have them altered . There are other adjustments which can change the rate at which your heart rate increases and the rate at which it falls when you stop exercising. You need to be aware however that the same settings may not last you for life. Sick Sinus Syndrome can change over time when your sinus node may become more lazy. Again, an adjustment to the settings will be the answer.
  • Don’t get too caught up in the heart rate charts and zones. We don’t necessarily fit into them anymore. If you feel good, then your rate is good. I don’t even track anymore, I go strictly by how I feel. If I can talk but not sing, if I’m working hard and sweating, then it’s all good. Some days that’s 135, other days it’s 165.

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Hiking with a backpack:

Q:  I’m surprised how close to the skin surface my pacemaker is. I’m planning a hiking trip soon. Have any of you used a heavy backpack, especially on multiple-day trips, and how do you manage the straps pressing painfully against the PM?

Answers from pacemaker patients:

  • In a perfect world, you ask the surgeon about choosing a submammary implant site before you get your pacemaker, so they don’t implant it where straps would get in the way! Barring that, you go shopping and test things out because everyone is different. It may not even be a problem if the straps don’t hit it or don’t bother you.
  • Some have had luck with extra padding on the strap, but I don’t think that’s a good option if your pack is heavy and/or you will be going long distances. Shop at a specialty outdoor store where staff are knowledgeable. Don’t bat an eye at asking to load up a pack and wear it around the store, where you can return it if it doesn’t work.
  • I got my first pacemaker 15 years ago (was never allowed any sport before that). I have a submammary implant so backpacks aren’t an issue for me. I don’t know why more surgeons don’t take into account our lifestyle when they do the placement.
  • Would one of those bags that goes over one shoulder and crosses your body be big enough? If not, modifying a standard pack it is probably your best bet. I don’t know that padding will help because it’s the pressure that will bother you.
  • I hiked in Patagonia last year wearing a daypack. I received terrific assistance from outfitter store staff who helped me find a pack where the straps didn’t sit on my pacemaker. I bought a pack with a hydration system. I just had to remove the magnet that held the mouthpiece because it was too close to the pacemaker.
  • I just returned from five days of hiking, and had no trouble with the pacemaker being impinged by my 55-lb. backpack. I did however place foam makeup pads above and beside the PM site, and also fastened them to my strap. I also loosened the sternum connection so that the strap did not creep inwards over time. Having a pacemaker should not keep anyone from enjoying the lifestyle they love. I’m as active now as I was pre-pacemaker!

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Electric toothbrushes:

Q:  On the directions for my new electric toothbrush, it said check with your cardiologist to see if it is safe to use if you have a pacemaker. Do any of you with pacemakers use an electric toothbrush?

Answers from pacemaker patients:

  • Yes, I have been using my electric toothbrush with no problems. I did mention I was buying one to my dentist and he didn’t say it was a problem
  • I have an electric toothbrush that’s older than my pacemaker. I’ve used it since day 1 with no ill effects. Of course, I only use it on my teeth–never the pacemaker!
  • Here’s a list I found from the American Heart Association called Devices That May Interfere with Pacemakers (electric toothbrushes are not on this list!)
  • I suspect that this toothbrush warning is a CYA posted by lawyers, not medical people. Today’s pacemakers are very well-shielded. The fact is, it takes a very, very strong electromagnet to have an effect on our devices.
  • If you’re concerned, as an extra precaution to be absolutely safe, you only need to keep the electric toothbrush at least 6 inches away from your device.

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Lifting heavy weights:

Q:   Pacemaker/ICD implanted six weeks ago. My job requires me to lift heavy weights, up to 40 pounds, throughout the day. Do I have to change jobs?

Answer from Doug Rachac, my go-to expert on such matters (14 years working for the medical device company Medtronic, and now a patient with an implanted cardiac device himself!) Doug has also created several excellent patient-friendly YouTube videos about cardiac devices like pacemakers or defibrillators; here’s a good one about pacemakers specifically called Pacemakers 101). Meanwhile, here’s what Doug told me about lifting heavy weights:

“Of course, every patient is different, they should consult with their doctor first, but the general directions doctors give is that patients should not lift more than 10 pounds with their implant side arm for 6-8 weeks.

“For reference, a gallon of milk weighs 8.5 pounds. After that 6-8 week period patients can slowly return to their normal routine so that by the 3-month mark, they are back to normal lifting. For some people, that means body building, weight lifting, etc.  So, in theory, a person might be able to start lifting lighter weights at 6-8 weeks, and be back to normal within  three months. I made a video about this topic a few months back that might be helpful.  In the video, I also explain a little about why it’s important to take a break to heal. It has to do with scar tissue forming around the leads securing it into the heart wall.

“On the flip side, I could also introduce you to a patient named Frank who has an ICD implanted. He returned to work lifting heavy objects, and the motion caused his device leads to work themselves out of the body. After a surgical revision, and it happening again (with another revision), he decided he had to leave his job because he couldn’t lift those objects anymore. His situation is not the norm.  So…. yes, you can return to work and will be able to lift heavy objects again, but there is a small chance that the repetitive motion could cause problems. We just won’t know if that will happen until it does. I hope that helps!”

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Thank you to my blog readers, to Doug Rachac, and the heart patient members of both the Pacemaker Club and WomenHeart’s All About Arrhythmias online communities for sharing their personal insights and experiences of living with a pacemaker.

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NOTE FROM CAROLYN: I wrote more about what it’s like to learn to adapt to cardiac procedures (like getting a pacemaker) in my book A Woman’s Guide to Living with Heart Disease (Johns Hopkins University Press). You can ask for this book at your local bookshop, or order it online (paperback, hardcover or e-book) at Amazon, or order it directly from Johns Hopkins University Press (use their code HTWN to save 30% off the list price when you order).

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Q: What tips have you learned about living with a pacemaker?

Published by Carolyn Thomas

164 thoughts on “Hello pacers! A little Q&A about your pacemaker”

  1. My partner has a pacemaker. She was taken ill on Boxing Day 2019 at her Daughter’s house, we got back home, I rang her son, he said ring 999, the Ambulance man said we are taking you to QMC, we was there for 5 hours than she was taken to the city hospital. She was there for 3 weeks that was 14 weeks ago, she is up and down she has been in out of the QMC all they did was an x-ray then she had to go and have 3 lots of iron in her, the doctor said she is alright. She has her good days and bad days.

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    1. Hello Malcolm – having a partner with a fairly new pacemaker or any other type of medical implant can be as stressful as actually being the patient yourself, mostly because it’s hard to watch somebody you love suffering, yet be helpless to know what to do. It also sounds like she might be experiencing other non-cardiac issues that are complicating her recovery. As some of the comments from other pacemaker patients (above) remind us, it can take a year post-pacemaker for things to really settle down. She’s in relatively early days yet – about four months. I hope things will ease up little by little. Meanwhile, check out Doug Rachac’s excellent videos.

      Best of luck to both of you…

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  2. Pace maker in Sept, for 2 month I felt agitated if I worked a little harder, started to take magnesium, felt better, still had an appointment and my rate was changed from 130 to 110. A day after wasn’t able to work hard. Should I give it some time or should I go back to the clinic?

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    1. Hi Nelson – I’m not a physician so cannot answer your unique question directly, but I can tell you generally, as one of the “pacers” in this article says: “The pacemaker is working the way it is programmed to. It does NOT mean it has been programmed to work in a way that is best for you. Many people do well with out-of-the-box settings, but others might need several adjustments before the settings are right.”

      It seems like you were feeling okay before the adjustment but now are unable to work as hard as you were before the adjustment. Just to be on the safe side, I’d get it checked out with your physician if this continues.

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  3. My partner has a pacemaker but she is not happy about it. She has been in the QMC Nottingham, 2nd time I rang the doctor, they said ring 999. 4 weeks ago she was in the city hospital, now back home, still in pain what can I do?

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    1. Hello Malcolm – sorry to hear your wife is still having problems. It’s common to have some discomfort in the early days/weeks post-op, but something is causing this pain and you two need to find out what that is. You might consider starting a Symptom Journal (date, time of day, what was she doing/feeling just before pain worsened, what kind of pain (e.g. pulling/burning/stabbing?) – often, this may reveal a pattern that has clues for the doctor to help solve the mystery. Good luck to you both…

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  4. I lost 18 pounds which means boobs shrunk too. Now my pacemaker site feels weird, a pulling feeling. Is this normal? Have had now 16 years but never lost weight like this. Age 74.

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    1. Hello June – after 16 years, you likely felt like you were already pretty accustomed to your pacemaker. So a sudden change in that requires an appointment with your physician to discuss this “weird” feeling you’re experiencing. There is a type of surgical revision to correct pacemaker position in its “pocket”. It’s relatively rare, but might be an option for you. Again, please discuss with your doctor.

      P.S. June, I decided to ask your question to my go-to cardiac device person, Doug Rachac (who is not only a heart patient living with an implanted cardiac device himself, but also spent 14 years working for device manufacturer, Medtronic). Here’s how he answered your question:

      “Yes, I have heard of this issue when it’s associated with significant weight loss. Most devices have a small hole in the header block (where the leads plug into the device). Physicians can use this hole to suture the device to the tissue/muscle inside the pocket. The pocket is usually just big enough to fit the device, and so it’s a snug fit. The suture provides a little extra stability so the device doesn’t move around inside the pocket. When a person loses a large amount of weight, it can cause the tissue around the device to shrink too, which gives the device a little more room to move. I have heard other patients talk about a tugging or pulling sensation around their device/pocket. Best bet is to to talk to the doctor to discuss options. If the pain is severe enough, it may result in a pocket revision to alleviate the tugging. I hope that helps!”

      FYI, Doug has created some really useful YouTube videos for other heart patients like you. (He talks about the sutures he mentioned in the video about “Leads” at about the 7 minute mark)

      – Thanks, Doug!

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  5. I got a pace maker May 8,2019; have never seem a cardiologist since but have an appointment on June 15.

    Was told by the cardiologist office I can go back to work May 12. When I dropped off my paper work for them to fill out showing what I am able to to as far as lifting, carrying, pulling, pushing, bending, etc. they refused, giving all papers back telling me I must take them to my primary care provider (PCP) to fill out!!

    My PCP thinks it is my cardiologist’s responsibility, which I agree!! What to do? I am stuck between a rock and a hard plate! Someone help!!

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    1. Well, isn’t that stupidly annoying? Not sure I’m understanding this correctly: is it your cardiologist demanding that the PCP sign the papers, or is it your employer demanding this?

      I’m guessing that you would like to return to work, and the only way that’s going to happen is if you have a doctor’s signature on those papers. Don’t fight it worrying which doc is the most qualified to offer an opinion. The family doc is often considered the ‘quarterback’ of the whole medical team, as opposed to specialists that you see maybe once in a blue moon, but the PCP is understandably looking to the cardiologist as the one most qualified post-op to judge return-to-work readiness – or perhaps just trying to dodge having to fill out more forms…

      Explain directly to your PCP the reality (i.e. not to the front desk staff) and ask for some cooperation in getting this done. SOMEBODY needs to help you here. This is a one-off request, not an ongoing burden for your PCP, for Pete’s sake… Where I live, there’s a standard fee for filling out forms that’s not covered by our (almost universal) healthcare system.

      Good luck, Vicki! I hope your June cardiology appointment goes very well…

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  6. I have had a pacemaker for 3 years now but I seem to have problems with lungs hurting and heavy chest after a lot of physical activity as well as tiredness. I also have it when I lie down at night as well as a cough. Is this from heart issues or could it be lung problem. I’m not a smoker. I’ve talked to cardiologist & regular doctor they had me get checked out by a gastroenterologist, but found nothing??

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    1. Hi Karen – I’m not a physician so of course cannot comment on your specific situation, but I can say generally that symptoms from neck to navel that come on with exertion and go away with rest are often considered to be cardiac until proven otherwise. A lung problem is also a possibility – a referral to a lung function clinic or a pulmonary medicine specialist might be your next step. Best of luck to you in solving this mystery…

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  7. I just have a question. It’s been 5 weeks since I got my pacemaker and I’m still having pain at the site. Dr said it’s working fine. It’s a pulling kind of pain. Any suggestions?

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    1. Hi Carol – go back and see your doctor. This may be just “normal” healing discomfort that’s not uncommon, but there might be something your doc can recommend for this “pulling” pain. Start a Symptom Journal (date, time of day, what you were doing/feeling just before symptoms worsened) – often this may reveal a pattern that has clues for what’s hurting. Good luck to you…

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  8. Why do I wake up 3 to 4 times at night after having a pacemaker surgery? I thought my sleeping would improve. Can someone help me with this? Thanks.

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  10. Thank you! I have been looking for more information about others with pacemakers.

    I have a couple suggestions that I found helpful after my surgery 6 weeks ago. I am a 56 year old woman. I wish someone had mentioned to me that I may want a strapless bra with good support or one with soft adjustable straps and a little looser around. It is tricky not reaching behind yourself in the beginning. Learn to layer your pillows so you can roll to the side your incision and pacer is on.

    It comes down to getting comfortable and finding that sweet spot.

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    1. Hi Lisa. Thanks so much for your excellent suggestions. I’ve heard that strapless bra idea before and it makes sense to me – anything that helps relieve pressure around the incision area, right? You might try hooking up the hooks in front (the opposite of how you’ve been hooking up your bra for your whole life, probably!) and than slowly turning the whole thing around until the hook/closure is in the middle of your back where it should be. You’re right – it takes some time to find that sweet spot!

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    2. Yes I had same problem, had my pacemaker fitted Feb 2020 and experiencing many of these issues but have found the ‘balcony’ bras ideal, giving support and strap clear from pacemaker site.

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  11. I am getting little shocks that ripple across my chest
    In the area where the leads are for my pacemaker from left to right. What might this be?

    It happened the first time when I had been sitting in front of my desktop iMac computer about a foot and a half away from my chest. Also I sometimes hold my iPhone close to my chest to read things on it. I have heard this is not a good thing to do and I am trying to remember not to do this.

    But it has happened a couple of times when I have done that (the little electrical shocks rippling across my chest from left to right.

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    1. Hi Marco – I’m not a physician so can’t comment specifically on the cause of your puzzling electrical shocks, but I can say generally that, as you have likely been told, people with pacemakers should never hold a computer, tablet or e-reader against the chest. And you should never allow any type of computer device to rest on the side of your chest where the pacemaker is.

      Also, it may be unlikely that a cellphone will cause interference with your pacemaker, but check first with your doctor to see if you should take precautions. Most doctors, for example, recommend the following:
      – hold your cellphone on the side of your head away from the pacemaker
      – don’t rest a cell phone against your chest where the pacemaker is
      – if you carry a shoulder bag with a cell phone inside, wear it on the opposite side of the body from the pacemaker

      Hope these tips help… Meanwhile, double check with your doctor right away about those little shocks.

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  12. My father has had a pacemaker for 5 years. Recently he was diagnosed with Atrial Flutter.

    He is exhausted after only a couple minutes of exertion. He also notices that now when he does exert himself, or walks up and down the stairs, the pacemaker does not make his heart beat more than the minimum it is set at. I went to the cardiologist with him and we discussed this with him. They adjusted the pacemaker but the issue remains the same.

    They did adjust the minimum rate at 80 (up from 70). The nurse did not mention a maximum beat. She said she adjusted the sensitivity level. ???

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    1. Hi Aurora – I’m not a physician so can’t comment of course on your Dad’s specific experience, but I can say generally that it can be hard to pinpoint the cause of this exhaustion (e.g. is it the settings on his pacemaker, or the atrial flutter symptoms?) But SOMETHING is causing it. Whatever the adjustments, they did not seem to make an improvement. If I were your Dad, I’d go back for more help, or get a second opinion.

      I would also be alarmed whenever an older person suddenly starts reducing exercise levels due to “exhaustion after only a couple of minutes”. Best of luck to you and your Dad…

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  14. I’m 78, been long distance running/biking for over 50 years. Everything was fine until they put me on one of those stress tests which I always fail due to a very low heart beat.

    Over the yrs resting heartbeat was dropping from the 40’s to the low 30’s esp in the morning. They put me on a monitor and my BPM were 23 with interruptions from time to time while sleeping. I told the Dr that I had signed up for a 10K, he said run it and after we’ll put in the pacemaker which they did.

    For the past 3 yrs, it seriously affected my physical activity, biking, running, hiking has been affected and after running I have a hard time keeping my BP up as sometimes it falls into the high 80’s/high 40’s. I feel faint, rest and eventually it will rtn to normal.

    The pacemaker was originally set at 50 BPM and then changed to 60 BPM still no major change. I was wondering that if a heart was at rest in the 30’s and 40’s for decades,is now upped to minimum 60 BPM the reason for my weakness?

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    1. Hello Joe – you seem like a bit of an outlier compared to the “average” pacemaker patient. And it also seems like your pacemaker has affected your overall quality of life in a troubling and significant way. I can’t answer your question about pacing heart rate, but if I were you, I’d go right back to the doctor and ask him/her what plan can help you restore your quality of life. Best of luck to you…

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      1. Sometimes it feels very sensitive in the area where my pacemaker is when I eat or drink. I just got it October 11, 2019. is this a normal feeling? Please help.

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  15. I’ve had my pacemaker for 3 years due to 3rd degree heart block…I flatlined…my pacing’s been adjusted a few times from 60 to 50 now 55….

    The reason for the changes is because I feel my heart pounding every time it paces…really annoying. I can’t sleep on my left side either because the pacing is horrid….so they tried different levels of pacing and there’s no difference….I’m also feeling that 55 is too low…..my doctor doesn’t seem to think there’s a problem.

    I don’t agree….hard to fall asleep or rest when you can even SEE your chest pounding…. Thoughts anyone? Thank you.

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    1. Hi Carol – I’m guessing that your doctor doesn’t seem to think there’s a problem because your doctor’s not the one with the pacemaker implanted.

      If you’re still having problems after three years, then that means there’s a problem. A period of adjustment is common – but that’s a very long time to still be adjusting.

      It sounds like you’re feeling 55 is too low, yet the pacing’s been gradually reduced so far to address the heart pounding sensation. You need an expert opinion to see if there’s a compromise that’s more comfortable for you.

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    2. When I first got my Pacemaker the IT people had it functioning at 60 BPM. I was lethargic and always tired. I saw them about 3 months later and told them this and they increase my BPM up to a maximum of 130 beats per minute. I instantly got a new life. Plenty of energy and vigour. However after about 2 months of feeling great I have slowly gone backwards and again shortness of breath is there. I will see the IT Heart people again in June if I can’t get in earlier. Hopefully they will work out the problem and get me back to how I felt when they increase it to a maximum of 130 BPM. Trial and error I suppose.

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  16. So helpful. I got my PM just a week ago and I am having bouts of breathlessness, dizziness and feeling I will faint. Am waiting for doc to visit. Meantime your posts have reassured me. Thank you all

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    1. Hello Kate – you’re in very early days yet, and as you can tell by reading these other pacers’ stories, it’s actually quite common to need time to settle in, get your PM settings adjusted appropriately, etc. I hope you’ll soon be feeling much better…

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      1. Glad to read this, I also had a PM inserted a week ago, all I was told on being discharged was about not lifting my left arm and that I couldn’t drive for a week! The same evening I felt very woozy and thought I was going to pass out. The next morning I felt so ghastly that my husband rang 999, they did basic checks but took me to the hospital where I had every test possible taking all day. They said the pacemaker was working perfectly and nothing else appeared to be wrong, I could be dehydrated after the rigours of the previous day.

        Since then I hadn’t felt dreadful but decidedly unstable, this morning I thought I was going to faint again, our local medical practice organised yet another cardiogram and BP check, the doctor could see nothing significantly wrong, just said I needed to take things slowly and if I had chest pains or passed out we had to ring 999 again.

        So far I have never had chest pains, my PM was due to an irregular heartbeat, I was issued with a sublingual spray with no instructions, fortunately I can read! It has been a long hard haul for us especially as my husband has just completely 6 rounds of chemo, I know I worry a lot but how do you keep calm?

        Many thanks for being there.
        Susan Dockray

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        1. Hi Susan – I’m so sorry you’re going through all this, especially hard on the heels of your husband’s chemo therapy!

          Many people say that it takes about 6-8 weeks for things to really feel like you’re settled in after getting a PM. By then I hope you’ll be looking back on this time today, relieved that you’re doing so much better. Giving your body time to heal requires patience; it does take time for your body to heal and adjust.

          Feeling woozy, unstable or like you’re going to faint is a very distressing way to feel. (By the way, if your sublingual spray is for nitroglycerin (GTN) – BE CAREFUL as dizziness and lightedness are known side effects for this chest pain medication. Check the package insert info on any other cardiac meds you’re taking, e.g. Beta blockers or calcium-channel blockers could cause light-headedness. Ironically, many people who get a pacemaker implanted often have a slow heart rate that has caused them to feel faint or light-headed in the past.

          The trouble with worrying is that it’s so counter-productive – and it doesn’t help things to get better. After my heart attack, I became very worried that I was likely going to die in my sleep. So every night before bed I used to tidy the apartment, take out all the recycling, make sure that when the paramedics (or worse! my grown children) found my corpse the next day, at least I’d be found in a nice neat place. It took weeks for me to gradually realize that, despite my worrying, I still seemed to be alive – and all those endless hours spent worrying (and tidying!) were all for nought. Try taking deep breaths, listen to some music you love, read a favourite book, give your body time to heal and settle down, and drink that glass of water.

          You might feel reassured by learning what you can about what you’ve just experienced. It can feel overwhelming in the early days when you’re figuring out how to adjust and make sense of it. Doug Rachac is a person who worked for 14 years for Medtronic, a big company that makes implantable cardiac devices – and then he became a heart patient living with an implantable device himself. Here’s an example of one of his many YouTube videos to help other heart patients. As Doug would say, “Don’t panic!”

          But do pay attention to what the doctor reminded you: call 999 if you do feel chest pain of if you do pass out. Good luck to you, Susan (and to your husband).

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  17. First time reading your site….sooooo enlightening. Great title…my heart sisters❤️

    My Pacemaker implant …1st…was in April 2016 in Melbourne after head trauma. Unfortunately at the time I passed out I was on the bicycle…hence the head trauma and 18 days in hospital…no prior issues/warnings, in fact I am very fit and healthy 67 year old.

    But that is a long story that ended so well and hopefully stays that way 🙏🏻

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  18. I am 65 years old. I have had my 3 lead pacemaker for 5 months. I am set at 60.

    I wake up at night and don’t sleep well.

    My main problem is that I am cranky all the time…my husband and I never fought…now it’s all the time. He is devoted to me and has taken over housework etc. and he doesn’t mind.

    Why am I so angry….I’m not that kind of person.

    Lorraine

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    1. Hello Lorraine – I’m not a physician, but I can tell you generally that right now you simply don’t know what is causing this crankiness. It may or may not have anything to do with your pacemaker. I’m also thinking that a person who is chronically sleep-deprived is very likely to be cranky.

      Please see your doctor and be very firm in describing in detail these distressing symptoms to try to get to the bottom of what’s causing them.

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  19. I felt much better before the pacemaker than I do now. Before I could shovel snow, and now have a hard time getting the mail.

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    2. I complained to my heart Dr about not feeling well and very low energy. He said it was something else.

      I was taking blood pressure meds and moved. New prescription was a different color pill. Within 2 days of new pill I felt like a new person. Talked to my GP and he told me yes different manufacturers can add different stuff. So I will always get the mfg. of the new pill.
      Karen

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      1. Hi Karen – I find your story so disturbing!

        The current reality is that 80 percent of ‘active ingredients’ in our brand name drugs and 40 percent of finished drugs sold in North America/Europe are no longer manufactured in North America or Europe, but overseas, typically in India or China (cheap labour, fewer health/safety regulations, limited factory inspections, cost savings for Big Pharma). This has become, as NPR called it, “a web of systematic fraud”.

        Your story is a good example of what to do if unexplained symptoms persist – ask your doctor to change the prescription. But what this means is that the patient is essentially becoming the human guinea pig in this Big Pharma marketing experiment…

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  20. I have a question.

    I have had the pacemaker for 5 weeks now. I felt better before it was put in. Now I have to be shocked to make it better. Is that normal?

    Liked by 1 person

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