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    • #21629
      Brittany Foster
      Keymaster

      I have spoken to a few people on the forums and they have mentioned being diagnosed with different types of heart rhythm disturbances. I personally have SVT (a fast heart arrhythmia coming from the top of the heart), have had bouts of v tach with hospitalizations and I have a history of atrial fib and bradycardia (slow heart rate)

      I see an electrophysiologist and have a permanent pacemaker implanted to help with my heart rate.

      Do you see an EP for your heart rhythm? Have you been told that you have electrical disturbances of your heart? How is this being treated for you?

    • #21631
      Kevin Smith
      Participant

      Yup. SVTs. I got ’em, too. Not sure where they came from or what the triggers are, yet, if any. Bothersome, almost creepy. I was prescribed 30mg Diltiazem every six hours. That seems to help a little, but they still appear and are still disturbing. I will press my cardiologist on them to see what else we can do. I am having some blood tests one of which will check for thyroid function, whose dysfunction can contribute to or cause “palpitations.” We are moving to the Rochester, NY, area next spring as University of Rochester’s Strong Memorial Hospital has a nationally recognized PH program. I imagine the cardiology program is first-rate, too. Interesting for me because I was born there in 1960 and lived in Rochester with my folks until 1967…

      • #21637
        Brittany Foster
        Keymaster

        That team there sounds promising and seems like they would be able to have the skills and the experience to hopefully help you the best they can! That’s really all we can wish for . I’m sorry the medication isn’t working as well. Maybe you could speak to your doctor about an ablation to help possibly pinpoint where the arrhythmia may be coming from and better treat the source of the problem! That’s what they did for my SVT and how they figured out medical treatment that helps.

    • #21931
      Mistylynn
      Participant

      I have had PVCs for numerous years. There really isn’t anything they’re doing for them. My pulse was up so they gave me digoxin once a day, but I don’t think that does anything for the PVCs. Maybe they happen a little less, but supposedly it’s more contingent on my magnesium levels.

      • #21940
        Brittany Foster
        Keymaster

        Mistylynn,
        I have heard of people having arrythmias because some of their levels are off. Particularly if the potassium levels are low, magnesium, and iron . Differences in blood work levels like this and fluctuations can set off the systems, especially the electrical parts of the heart. Do you get blood work to check your levels out?

      • #21948
        Colleen Steele
        Keymaster

        Mistylynn,
        My son always had PVC issues as well. Definitely suggest the blood work that Brittany mentioned if they haven’t been done yet. Magnesium is especially important. My son takes high doses of magnesium both pre and post transplant. With all the other concerns magnesium sounds like such a minor thing to focus on but his doctor watches is closely. He doesn’t like to see those levels drop and if they do, he bumps up the dosage.

        • #21951
          Brittany Foster
          Keymaster

          So true, Colleen. This is why checking levels is so important too when things like this happen because there can be supplements or medications that we can easily take that can help lower the amount of times that we are having arrythmias. When I was in the hospital last they had to give it to me through the IV and also I had to take a potassium pill. Taking the pill was a pretty simple fix to what could have led to some dangerous arrythmias if it got too low of a level.

    • #21956
      Shannon
      Participant

      Hello. I feel like I am on every forum today . Sorry if I am being excessive. But anyway lol my daughter has had a pacemaker since she was born. She was born with Complete Heart Block. She now is on her fifth one. And needs a new one implanted within the year. Her battery is dying out. She does well with it. She hasn’t had a new one since 4th grade! So it’s time for a upgrade. I also have a pacemaker they put mine in over the Summer. My heart was jumping around all over the place. I feel a lot better and stronger with it, and I am not passing out as much as I use to. Do you feel better since having one implanted Brittany?

      • #21967
        Brittany Foster
        Keymaster

        Hi Shannon! Never feel like you have to apologize for interacting on the forums. I always love to hear from you as well as all of our members so feel free to come on here and comment as much as you want to! I know that things that people post and respond to can really help others too. I was born with different types of heart block called bifascicular bundle branch blockage. It has caused symptoms like passing out, light headed, and dizziness before my pacemaker. Since getting it, that definitely has been a lot better. Mine is set at a low rate of 60 and a high rate of 180. Do you know what your settings are? Mine is a dual chamber but mostly fires in the atrium of the heart.

    • #21957
      Kevin Smith
      Participant

      Magnesium plays a role. Apparently there are those in the world who find relief fro PVCs and SVTs from magnesium supplementation.

      I was boosted from 30 mg diltiazem to 60 and it helped a little. I began my own magnesium supplementation.

      Learn all sorts of things by doing one’s own research (not PH but interesting anyway):

      1. Metformin over time increases homocysteine levels, which directly contributes to neuropathy, which I have in my feet. I will be beginning Metanx, a strange drug that counteracts this, in the near future. https://www.podiatrytoday.com/blogged/metformin-use-increase-the-risk-of-diabetic-neuropathy

      2. There are other studies that says Metformin helps PREVENT neuropathy. https://www.sciencedirect.com/science/article/pii/S1567576919306812?via%3Dihub

      3. Statins and calcium channel blockers (Diltiazem) also don’t play nicely together. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4718284/
      https://www.webmd.com/drugs/2/drug-3330/lipitor-oral/details/list-interaction-details/dmid-390/dmtitle-atorvastatin-diltiazem/intrtype-drug

      Bottom line: do your own research and pester your medical professionals. I’m lucky in that I have access via a secure VA messaging system and they’re pretty good about responding.

      Oh, and about the SVTs: I have asked the cardiologist to consider the ablation procedure. I am tired of the SVTs.

      • #21970
        Brittany Foster
        Keymaster

        Hey Kevin,
        It really is important to be your own advocate and to do your own research in all of this. That is good that you are aware of all of this and can better tell your doctors about what may be going on. The better informed we are, the better off we are and the more control we feel like we have in our medical care. I know that having control in my care has been really important for me. Thank you for sharing these links and this information with us.

    • #22016
      Tamara
      Participant

      Bradycardia and something called Wide Complex.

    • #22020
      Brittany Foster
      Keymaster

      Hi Tamara,
      I also had bradycardia. Are they doing anything for yours? Are you experiencing symptoms when your heart rate gets really low? I remember before I had my pacemaker placed for my bradycardia, I was passing out pretty frequently and would get really dizzy. It also started to impact my blood pressure and it was getting really low which only added to the dizziness that I felt.

    • #22023
      Tamara
      Participant

      Hi Brittany,

      When I first presented with PH symptoms a very long time ago, I was dx’d with Neurocardiogenic Syncope. Yet, every med and treatment did nothing to inhibit my passing out; which is why I sought medical help! Back then my BP was in the 70’s and 80’s. I would have Abnormal EKG’s and they would disregard them because they didn’t know of PH back then (I was in a remote area). They suggested back then a pacemaker, but because nothing else was working, I didn’t trust their judgement/dx. So, I just continued to pass out for 9 years! My BP has been in the 90’s and dips in the mornings to the 80’s. So no one has really discussed anything about it. I wore a heart monitor for a month, because of sporadic Wide Complex. At that time, I was told IF it increased, then let the doc know…..it has been the same for years…so far, so good.

    • #23790
      Stephanie Mitchell
      Participant

      I had symptomatic bradycardia caused by sick sinus syndrome with chronotropic incompetence. I have a dual chamber pacemaker to treat it. I also have paroxysmal A-Fib and A-Flutter. I’ve had two catheter ablations to try and treat it, but it still comes back periodically.

    • #23795
      Robin Webster
      Participant

      My electrical problems in the heart were diagnosed right after my PH diagnosis. The PH doc gave me a beta blocker and I passed out. My various problems are atrial fibrillation, sick sinus syndrome, bradycardia, tachycardia, PVCs, SVTs … and just three weeks ago during a surgery to map the electrical impulses in my heart and replace what they thought was a faulty atrial lead, they discovered that a section of my upper heart will no longer carry electrical signals. It’s sort of like a cell phone “dead zone” with no service. Unfortunately that’s right where the atrial lead was implanted. The EPs wanted to remove that lead and replace it. My PH doc said that surgery was too risky for me and wanted them to abandon that lead and just add a third lead. During the surgery (which stretched from an intended 2-hour max to a 7-hour ordeal) they tried a number of new pacemakers (different brands) because the surgeon couldn’t get my St. Jude’s to program the way he needed. I now have a Medtronic. I guess it’s a bit of a step up, because I no longer need the Merlin home device to transmit. I just have an app on my phone. AND I now have an estimated 11 years of new battery life (if I should be so lucky.) I’m not sure I fully understand why, but the doctor told me that I may actually see some improvement in my PH with this new device. (I was supposed to have a two-week checkup and hoped to learn more then, but due to Covid they said they don’t want me back at the hospital for at least two months.) One thing I have noticed already though is that my oxygenation level is noticeably improved. When I randomly check it now I see 92 to 95. Today I even saw a 97. I previously struggled to maintain 90 and could only do that with very mindful, deliberate breathing.

    • #23805
      Brittany Foster
      Keymaster

      @stephanie! You and I are very very similar. I have this exact diagnosis on top of bifascicular heart block from birth. I also have a double chamber pacemaker from Medtronics. I am due to have it changed in 2 years or so! How long have you had your pacemaker for? Mine is going on 7 years with it. I had it placed in 2013

    • #23806
      Brittany Foster
      Keymaster

      @robin-webster sometimes with the Medtronic devices they can program it a little more specifically to help with increasing the demand given out and therefore decreasing the workload of the heart and helping to ease some of the work and stress that may be contributing to the PH. This is something that would be interesting for you to know. Maybe they programmed the pacemaker so that it works differently or works even more so than before. This is a type of program that I am set to so that my pacemaker works more for me. Do you know if they changed any of your settings or switched some things around? It looks like having a new company might be the best option for you! I really love my Medtronic .

    • #23815
      Stephanie Mitchell
      Participant

      Brittany, I had my pacemaker implanted in 2016. It’s a Boston Scientific dual chamber with the extended life battery that is good for around 15 yrs. I’m 99% atrial paced. It does have the accelerometer and also a minute ventilation sensor that can sense when you are breathing faster and/or deeper than normal and will accelerate the heart rate. My EP said, it’s the only one on the market that has both sensors. It took some tweaking of the settings, but I think they have it set on a good sensitivity.

    • #23825
      Rebecca Talkie
      Participant

      Funny that this topic should come up now. I am on the tail end of a 30 day cardiac monitor test. After a 3 day one, they only caught a couple minor runs of PACs. But I was having dizzy spells and a couple short episodes of passing out. I was born with a congential heart defect, and even though it was fixed, my PAH Dr. said that my heart is probably abnormal and now my atria is acting up. His feeling is that I will end up with an EP Dr and perhaps an ablation.I have a new cardiologist and he was not impressed but did order this test. So, jury is out on this. My labs are all normal so, no magnesium problems. We shall see.

    • #23834
      Brittany Foster
      Keymaster

      @stephanie wow that is pretty great! I like the thought of it sensing changes in ventilation. I am sure that there is some type of correlation between that and the heart rate anyways and when your heart should be increasing with ventilation and activity. For people with a disconnect in their ventilation and exercise this might end up being hard to control though or hard to sense! I know that for me because of my muscle weakness it doesn’t necessarily match up! Do you have any difficulty with this setting?

    • #23841
      Brittany Foster
      Keymaster

      @becca that is scary to be going through and not knowing exactly what is going on. For me, the atrium of the heart is where most of the electrical abnormalities are. The testing that really helped the doctors to see what was going on was the 30 day holter monitor as well as an EP study that was done with exercise. It helped them see that my heart rate doesn’t increase well with activity. Now, my pacemaker helps and does that for me with exertion. It decreases a lot of the stress on the heart too which I’m thankful for. Hopefully they can try an ablation first if that is needed !

    • #23845
      Stephanie Mitchell
      Participant

      Brittany, my pacemaker blends the two sensors together to give the signal to accelerate my heart rate. They can adjust the sensitivity and the amount that either sensor gives or turn off one, or both sensors. Here is a good, although technical, description of how the sensors work.

      https://www.cardiocases.com/en/pacingdefibrillation/specificities/pm-programming-exercise/boston-scientific/rate-adaptive-pacing

    • #23844
      Stephanie Mitchell
      Participant

      Deleted due to double posting.

    • #23852
      Jennifer Beaty
      Participant

      This is interesting. I never considered that my atrial fib could be caused by my low potassium level. I’ll have to discuss this with my doctor on my follow-up Friday.

    • #23854
      Brittany Foster
      Keymaster

      @stephanie that is so interesting to me! It’s always so fascinating what science can do and the different types of pacemakers and what they are programmed and capable of doing. You reminded me yesterday that I missed a pacemaker check with my EP and I am going to send him a reading probably this week to make sure things are looking okay. I looked at my files and saw that a check was due in beginning of March and I never got to it! How often do you get checks? Mine is every 3 months that I transmit it from home and then once every 6 months for an appt in person.

    • #23857
      Brittany Foster
      Keymaster

      @jennifer-beaty yes, this is definitely something that you should bring up to your team! Sometimes electrolyte disturbances can mess with the heart’s rhythm. Too much or too little of electrolytes can sometimes cause problems and make the heart work harder. Definitely mention this to your medical team because it could be a more “simple” solution to what you’re experiencing if they find something in your labwork that could explain your symptoms.

      Does anyone else have abnormal electrolyte levels on bloodwork? Has this been tied to your electrical abnormalities of the heart? Share here in this thread!

    • #23877
      Stephanie Mitchell
      Participant

      Brittany, my pacemaker interrogation device sits next to my couch on and end table. It sends daily reports back to my EP and I can also manually send a report if I feel something warrants it by pressing a button on the box. Otherwise, I go every three months to the office for a checkup and full pacemaker device check. Those are usually with either the EP nurses or CNP. I see my actual EP doctor every six months.

    • #23878
      Stephanie Mitchell
      Participant

      My electrolytes are screwy. My Potassium is usually on the low side. I now take a Potassium supplement daily to keep it in the low normal range.

    • #23896
      Brittany Foster
      Keymaster

      @stephanie it seems like they are keeping a very close eye on things for you, which is great! Better to know what is going on then to be surprised 6 months later or even a year later at a check-up.

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