Brye Posted July 29, 2010 Report Share Posted July 29, 2010 I had another doctor appointment yesterday and again a pacemaker was recommended as probably some what helpful but not a cure. Anyone have a pacemaker story they can share. Potsgirl ... was it you who had one put in? I was wondering if it was worth it in the long run or do you regret having one placed? I was kind of hoping it would improve some of the lightheadedness. Any advice would be appreciated. I have bradycardia into the low 40's but no pauses or heart blocks. Backing off on the beta blocker hasn't gone well in the past. My primary diagnosis is POTS.Thanks!!Brye Quote Link to comment Share on other sites More sharing options...
potsgirl Posted July 29, 2010 Report Share Posted July 29, 2010 Hi Brye~You're right - I am one of the ones on the Forum who has a pacemaker. My dysautonomia started after I got really sick with CHF and dilated cardiomyopathy. I also had bradycardia, where my heart rate was dipping into the 30s and 40s. I think it definitely helped me feel better, knowing that my pacer was there to kick in anytime my HR tried to go below 60 (where it's set now). I think it helped me with my energy when I was dealing with my heart disease, so I would give it a positive review. I've had it for 4 years now, and was diagnosed with dys. about 2 1/2 years ago, so I'm not sure if it's helped with my energy since then. It is peace of mind, however, and then they can get read-outs on everything your heart has been doing between "check-ups" with your pacer, about every 6 months.Let us know what you decide, and good luck!Cheers,Jana Quote Link to comment Share on other sites More sharing options...
Tuesday Posted July 29, 2010 Report Share Posted July 29, 2010 I'm curious about this too since I am waiting to hear if my doctor is going to recommend a pacemaker. My HR is generally in the low 40's and dips down into the 30's during the day (not just at night). I've also got tachycardia, so they want to put me back on a beta blocker but my hr is already too low!Do you have any advice on whether to go with a pacemaker or try to go without as long as you can? How has your life changed since the pacemaker? What are the disadvantages you have had? What are the benefits?Thank you! Quote Link to comment Share on other sites More sharing options...
potsgirl Posted July 29, 2010 Report Share Posted July 29, 2010 I couldn't take BBs, either. I would go ahead and get one put in. I do think it helps, if only for your peace of mind. The only disadvantages I can think of is that you no longer can have an MRI, so get any of those done if you need to before they put in the pacer, and that you have to be 'hand-patted' down going through security at airports. I was a little embarrassed by my pacer showing through thin or scoop-neck tops, but that can be avoided and it gets better with time.I think that the possibility of a pacemaker helping you have a little more energy and keeping your heart rate stable is worth it. I would go ahead.Cheers,Jana Quote Link to comment Share on other sites More sharing options...
Tuesday Posted July 29, 2010 Report Share Posted July 29, 2010 Thank you! That is very helpful to hear that it is working well for you! It's scary but if it means I will feel better it sounds worth it! Quote Link to comment Share on other sites More sharing options...
Brye Posted July 29, 2010 Author Report Share Posted July 29, 2010 Thanks for the advice potsgirl. Glad to hear yours worked well for you. I've started a trial of midodrine for the next 3 months to see and we'll re-evaluate then. That one makes my scalp itch almost more than I can stand. Odd side effect!! I'm now leaning towards a pacemaker but it has taken me a long time to reach this point. 3 seperate EP doctors have now recommended as probably somewhat helpful but no guarantees. I was remaining hopeful my POTS would resolve and I wouldn't need the atenolol but it looks less likely as each day goes by. I actually have a loop recorder in right now so the last time I needed an MRI they had to do a myelogram instead. No fun on that one. Thanks and hope all is well with you!!!Brye Quote Link to comment Share on other sites More sharing options...
pat57 Posted July 29, 2010 Report Share Posted July 29, 2010 I'm on Norpace for Bradycardia from NCS. I was disabled prior to the Norpace, and I was offered a choice. Norpace or the pacemaker.I always hesitate to mention Norpace to POTS folk - but- that's what worked for me. Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted July 30, 2010 Report Share Posted July 30, 2010 Do a lot of research on this!!!A local cardiologist sent me to a local EP who thought pacers would help.My Mayo ANS doctors (neurologist and EP cardiologist) said that it would not help me.I trusted the ANS specialists.There are people here who regret having a pacer, I don't know why they haven't popped on yet. Maybe because all the feedback has not addressed any concerns yet.IF you do all your research and YOUR body is more likely to improve with a pacer than go for it. Just remember, some things can't be undone and you must be clear on all the pros and cons of this surgery.Speak with doctors you trust and who got "A+" in ANS dysfunction!Good wishes with this process and decisions.hugs,tearose Quote Link to comment Share on other sites More sharing options...
pat57 Posted July 30, 2010 Report Share Posted July 30, 2010 tearose,Are those with the problems folks that also had abalations?I think so. Quote Link to comment Share on other sites More sharing options...
Brye Posted July 31, 2010 Author Report Share Posted July 31, 2010 I'll have to archive the pacer conversations again. That's why I'm agonizing over this decision so much. If it doesn't help at all I'll be stuck with a pacer forever that I may never need. I haven't read of stories that pacers made anything worse. It's so hard to know what to do when there's no clear answer. It would be so much easier if I had some big pauses or severe brady spells that would make it clear. Never mind I said that, I don't want to jynx myself!! I'm so desperate to find some extra energy from somewhere. Not sure if this is the answer or not!Thanks all for your input!!Brye Quote Link to comment Share on other sites More sharing options...
yogini Posted July 31, 2010 Report Share Posted July 31, 2010 From what I have read, only very few people with dysautonomia benefit form pacemakers. And pacers only help with slow heart rates, not fast ones. Usually the people that get them don't have a choice - they had a failed ablation or their heart stopped on the TTT. I'm not saying don't get it, just do a lot of research, get a second opinion, etc before you decide. Hood luck. Quote Link to comment Share on other sites More sharing options...
potsgirl Posted July 31, 2010 Report Share Posted July 31, 2010 Good point, Yogini, although I got mine due to bradycardia, and never had an ablation. If the pacer is put in solely to help with bradycardia, I say go for it. If it's POTS you're wanting to help, then I'm not so sure. I know I certainly benefited from the pacer for my low HR though, giving me more energy and less worry. But it's certainly an individualized decision. My doctor was quite firm on what I needed, and I had seen a cardio from Mayo at the time. Quote Link to comment Share on other sites More sharing options...
flop Posted July 31, 2010 Report Share Posted July 31, 2010 If your tiredness is due to bradycardia then a pacemaker may help. Most people with POTS wouldn't benefit from pacing but those with frequent bradycardia may do. It is worth knowing that there now is one pacemaker that is compatible with MRI scanning - a teen in the UK was in the national papers a few months ago as being the first Briton to have this new type of pacemaker. You might have to argue for insurance coverage for anything so new / fancy but your other diagnoses may mean that you are more likely to need MRIs in the future???Whilst pacers are pretty much a permanent decision, unlike an ablation that can't be undone, it is possible to have a pacemaker switched off or even removed if it really does make your symptoms worse. Talk to several doctors and get advice before making your decision,Flop Quote Link to comment Share on other sites More sharing options...
Brye Posted August 4, 2010 Author Report Share Posted August 4, 2010 Thanks so much for all the input. I definitely have a bradycardia problem and that's what it would be for. I've been unable to back off the beta blocker. I'll look into the norpace as well. Not sure if that is an option for me but I'll do my research and chat with my doctor about it. Sign me up for the one that's compatable with MRI scans. Good to know there's one out there!!! It's such a tough decision to make because I do have the choice and I have to make it. There's no failed ablations or heart stopping moments. I've now had 2 doctors suggest it as probably helpful and one "I can put one in if you want me to?' My next appt isn't until October so I have a few months to see if the midodrine helps or not and to contemplate. Thanks all for your great input!!!Brye Quote Link to comment Share on other sites More sharing options...
tinkerbella Posted August 4, 2010 Report Share Posted August 4, 2010 BEST OF LUCK !!!!! Quote Link to comment Share on other sites More sharing options...
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