goodnuff77 Posted February 12, 2012 Report Share Posted February 12, 2012 (edited) So I'm going to talk to my Dr about a pacemaker. My heart rate sometimes goes in the 40's while resting then can go up to 180 and sometimes higher just from standing up. And my Blood pressure drops way down. So my question is Does the pacemaker help with any of the POTS symptoms or is it the same as being on a beta blocker where it helps sometimes. I wonder this because my blood pressure runs so low. Will have a leveled off heart rate fix bp or will I still have hypotension. And what about the headaches , stomach problems and the pooling of the blood. Will it help at all with anything. I'm confused Edited February 12, 2012 by corina Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted February 12, 2012 Report Share Posted February 12, 2012 Depends. I knew someone that has had hyper POTS for years and years - then suddenly it dropped right down - low HR and low BP, fainting all the time, and the pacer helped a lot then. Quote Link to comment Share on other sites More sharing options...
we_don't_look_sick Posted February 12, 2012 Report Share Posted February 12, 2012 (edited) Some people are really pleased with a pacemaker. Mine does nothing, NOTHING for symptoms. I was not given any false hope of it helping with symptoms; my pm will keep my heart beating on a faint. The pm has a high heart rate and a low heart rate, it will stop my heart rate from dropping below the low or above the high.That sounds like help for you.When my hydroxy Vit d was at 6 (min level is 32) I had wider swings in heart rate. Standing up to walk 2-3 feet would send my heart racing. Getting prescription Vit D and re-checking the levels brought my heart rate closer to normal.Low Vit D affects the muscles in your body; your heart is also a muscle. when the D gets low, it will start taking calcium from your bones. This caused me pain and lowered other levels in my body.Good luck & in my opinion no one should have surgery without making sure your hydroxy vit d levels are normal. I think you will have greater pain and more healing issues. Edited February 12, 2012 by MomtoGiuliana medical advice Quote Link to comment Share on other sites More sharing options...
Brye Posted February 12, 2012 Report Share Posted February 12, 2012 I'm praying it does, I'm having one put in Thursday! Vit D levels have really made a big difference on how I felt too. I was so thankful to have a primary doctor who thought to check that! Mine was down to 11. It puts such a drain on the small amount of energy I have to begin with. The pacemaker is a tough decision. I've been agonizing over it for a couple years!Brye Quote Link to comment Share on other sites More sharing options...
caroline Posted February 12, 2012 Report Share Posted February 12, 2012 I havent passed out once in the last year since getting my pacemaker. I got it because i had a heart blockage and wouldnt have lived without it but i am delighted to have it. Caroline Quote Link to comment Share on other sites More sharing options...
yogini Posted February 12, 2012 Report Share Posted February 12, 2012 (edited) From what I understand, most get a pacemaker because they have no other option - their heart stops on the TTT--I think it can help stabilize low HRs (which in turn may help BP) but does not help high HRs. Edited February 13, 2012 by yogini medical advice Quote Link to comment Share on other sites More sharing options...
goldicedance1 Posted February 12, 2012 Report Share Posted February 12, 2012 (edited) I think some of you are basing your information on old pacemakers. The Biotronik closed loop system can adjust for changes in heart rate. It makes adustments due to changes in autonomic nervous system. I got one. You need to check with an EP specialist who is familiar with the Biotronik. Not all EP's are familiar with it nor, if they are, are skillful at the adjustments necessary for the person with POTS.Dr. Grubb has been having success with it for people with POTS.A high HR is not going to kill you. A sudden drop in blood pressure without a quik rise in hr may cause you to faint. Pick your poison.Getting a pacer is not the end of the world. It does not damage your heart. An ablation to slow down a heart rate does damage your heart! Take it from me. The pacer will only turn on if you need it.From what I understand, most who have a pacer do not get it because their heart stops! They may get it because they have a slow heart rate.I think that you should have a frank discussion with an EP cardiologist. BTW, Brye..what kind are you getting? Edited February 13, 2012 by corina Quote Link to comment Share on other sites More sharing options...
goodnuff77 Posted February 12, 2012 Author Report Share Posted February 12, 2012 Brye: I dont know that I am getting a pacemaker. I just know meds dont seem to be helping and if in talking to my Dr. and he thinks it may be helpful in better my condition I'll take it from there. I'm lucky to have a Dr that is willing to research treatments then decide if it may be right for me. I've had him from the start and he's been more helpful than most if not all of the specialist I've seen. But what I read shows me having a low and high heart range the Biotronik would be helpful, plus I like how the Dr can get weekly reports from it. Once again this depends on my Dr. Quote Link to comment Share on other sites More sharing options...
yogini Posted February 13, 2012 Report Share Posted February 13, 2012 I am certainly not an EP and probably use imprecise terminology. Several people on this forum i believe were required to get a pacer due to asystole on the TTT. There was a 2009 discussion on this. Other than that (or in the case of an ablation, in which case i believe a pacer could be due to ablation and not dysautonomia itself) it seems unusual for someone w POTS to get a pacer. As noted on the dinet info page, it is a controversial treatment and not the first line of treatment. There are a lot of risks and only a doctor can advise on these (including, for example, whether there can be heart damage) and whether, based upon one's symptoms, it even makes sense to investgate this with an EP in the first place. There are lots of prior posts on this topic which probably articulate what I am trying to say more clearly.Getting a pacer is not the end of the world. It does not damage your heart. From what I understand, most who have a pacer do not get it because their heart stops! They may get it because they have a slow heart rate.BTW, Brye..what kind are you getting? Quote Link to comment Share on other sites More sharing options...
goldicedance1 Posted February 13, 2012 Report Share Posted February 13, 2012 Here is the article I was trying to locate about the use of the Biotronik and the proper settings. Observations on Optimal Programming of Closed Loop Cardiac Pacemakers in Patients with Refractory Neurocardiogenic Syncope The Journal of Innovations in the cardiac rhythm management 2: 7. 1-4 july Quote Link to comment Share on other sites More sharing options...
we_don't_look_sick Posted February 14, 2012 Report Share Posted February 14, 2012 I think some of you are basing your information on old pacemakers. The Biotronik closed loop system can adjust for changes in heart rate. It makes adustments due to changes in autonomic nervous system. I got one. You need to check with an EP specialist who is familiar with the Biotronik. Not all EP's are familiar with it nor, if they are, are skillful at the adjustments necessary for the person with POTS.I am trying to read and find the answer but do you know if this Biotronik closed loop system is different from a Medtronic Adapta pacemaker? This pacemaker is 'rate responsive' which I think means it senses what I am doing, resting or excercising and adjusts for the activity. I got it in 2008, I wouldn't think that was old. But computers are old in 3 months... Quote Link to comment Share on other sites More sharing options...
Brye Posted February 14, 2012 Report Share Posted February 14, 2012 I'm almost emberassed to say I don't know what pacemaker they're puttiing in. Waiting on a call back from the clinic. I'm thinking it's a medtronic, that was the brand of my loop recorder as well. That'll be taken out when they put the pacemaker. in. My meds have really done a good job of controlling my tachy rates overall. It's just the brady that has been occuring is a bit excessive. Praying it's the right thing for me, it's such a tough decision. I can tell even my doctor has been struggling with it. Glad he's struggling with it though. One doctor (not my favorite one) "I can put a pacemaker in if you want?" If I want ... really ... who wants one! I feel like my current EP is basing his decision on documented facts. So thankful to have found a good, supportive doctor!!!Brye Quote Link to comment Share on other sites More sharing options...
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