pat57 Posted September 1, 2009 Report Share Posted September 1, 2009 I was told back when I started on Norpace that a pace maker was my last option. That was probably 7 years ago. Now that I was told Norpace will no longer be manufactured I'd like to see if anybody has experience with sinus bradycardia and a pace maker.I realize that other meds may be available to try but I have reason to doubt that they will work.anyone? Quote Link to comment Share on other sites More sharing options...
Dawg Tired Posted September 1, 2009 Report Share Posted September 1, 2009 I have sick sinus syndrome and a pacemaker. Can't tell it has helped. Quote Link to comment Share on other sites More sharing options...
Poohbear Posted September 1, 2009 Report Share Posted September 1, 2009 I have pacemaker for bradycardia issues and it has helped with that. It does nothing for the tachycardia or the POTS but I failed all medication so it was my only option. Just be careful to choose a Dr who truly understands the ins' and outs' of dysautonomia and it's relationship to your other cardiac issues. Any device comes with hassles and headaches and the pacemaker is no exception. I can also tell you that having a pacemaker doesn't necessarily mean you won't also need the medications.One piece of advice that I wish someone had given me; If you do decide to get a pacemaker try to have any MRI's you might need done prior because it's still not safe to have an MRI once you get a pacer and it seems everyone is always wanting to review my "mri". Quote Link to comment Share on other sites More sharing options...
potsgirl Posted September 1, 2009 Report Share Posted September 1, 2009 I had a pacemaker implanted about 2 1/2 years ago due to some pretty severe bradycardia. I had also been diagnosed with dilated cardiomyopathy at the time. 6 months later, I was diagnosed with POTS/OI. Poohbear came up with one of the most important things to remember - have any MRIs that you might need done before you get your pacemaker! I wish I had known that before I got mine. My pacer is set so that my HR doesn't go below 60 bpm, and I know it's helped in pacing my heart. It's in use about 40% of the time. They can get all kinds of feedback from 'reading' your pacer, from abnormal rhythms to atrial fib, etc. So at least I don't have to deal with my HR being in the 30s, and it does give me a feeling of relief that I'm at least protected from that problem. Also - I had to take Coreg and Coumadin, but that was for atrial fib and my cardiomyopathy...you still may need to take some meds.Good luck! PM me if you want more info. Jana Quote Link to comment Share on other sites More sharing options...
Dawg Tired Posted September 1, 2009 Report Share Posted September 1, 2009 I do have brady issues - and they have had to set mine to kick on around 50 - which was a normal resting HR for me before I got sick. However - since my biggest problem is tachy, and it does nothing to help that or correct arrythmias, I'm just viewing it as another down side to this stuff. The big upside for ME?? I no longer have to get MRI's - they always came back negative anyway and since I'm claustrophobic, that's a good thing! Quote Link to comment Share on other sites More sharing options...
pat57 Posted September 1, 2009 Author Report Share Posted September 1, 2009 thanks guys. Quote Link to comment Share on other sites More sharing options...
Brye Posted September 2, 2009 Report Share Posted September 2, 2009 I've been agonizing over the pacemaker decision. If it'll help sign me up ... but it's not something that can just be tried. My next step is to get a loop monitor implanted to see if they can get a better idea of how many symptoms are from bradycardia. Good luck with your decision. If you do end up going with a pacemaker please let us know if it's helpful!Thanks!Brye Quote Link to comment Share on other sites More sharing options...
morgan617 Posted September 2, 2009 Report Share Posted September 2, 2009 I've had my pacemaker for 3 years now. Tachybrady syndrome. I still need a beta to keep my heart rate down, but even before i took it, I was dropping to about 25. And yes, I was syncopal with that rate.It doesn't help the tachy, but it does help the brady and i don't have syncope anymore. I am set at 70 because I have zillions of pac's and it helps overide them. I am not sorry i got it, but as everyone says, it's not a cure all. it does one thing, it doesn't let your heart rate dump. Well, it does keep track of some arrythmias too. But just records them.I despise MRI's and so to me I am very grateful I can't have them. That is not a loss to me at all. Claustrophobia and mri's just do not mesh....good luck with whatever you decide pat....morgan Quote Link to comment Share on other sites More sharing options...
pat57 Posted September 3, 2009 Author Report Share Posted September 3, 2009 thanks again.bradycardia is what causes my issues. Collapsing fainting and tonic clonic. And its frequent. The bradycardia has been confirmed during each of my 4 TTTs.I'm worried about having no income because if they try me on other meds and they don't work - I won't belong on the road and won't be able to work. And I really do not want to be having seizures in front of my daughter. I'll be a single mom as of Nov 4.Speaking of work...... time to go.thanks again Quote Link to comment Share on other sites More sharing options...
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