APierpoint

April 26 POTS and Inappropriate Sinus Tachycardia with Pacemaker 26 Mountains of NC Junctional Tachycardia, Lightheadedness, Nausea, weakness, sweaty Fall asleep fast, All Beta Blocker (made me depressed, didn't help much, and lost weight), Verapamil, Ace inhibitors So far Wellbutrin XL and Mestinon (That Dr. Grubb put me on). Still can't control Junctional Tachycardia. Thanks!

Hello Pat57 I have a medtronic pacemaker and I also have wireless internet. I have not had a problem being around one. When I received my pacemaker the Dr gave me a book on my particular device. It will tell you somethings you should not be around and what to be cautious about. I am around different wireless internet devices all the time and not just my wireless. You can also ask your Dr if you still have concerns. Apierpoint

Darcy Give a little background I was in college when I started having high blood pressure and tachycardia's. I was told of course that it was stress cause I was in college. They then put me on beta blocker to control both problems. From then to now I have taken: Toprol XL, Atenolol, Coreg, Labetalol, Inderal, and Bisoprolol. I have also taken Ace inhibitors and Calcium Channel blockers. When I was on beta blocker at first I was really weak no energy and having a hard time controlling my heart and blood pressure. It would drop both of them down too much even on low doses. After the ablations, I was placed on them again for irregular heart rhythm. They made me depressed, lost my appetite and lost weight, no energy, sleeping all the time, nausea with vomiting at times and dizziness when standing (more than normal). Beta blockers slow everything down and that is how I felt all the time. Now not all people have the side effects or very sensitive to these drugs. For some reason I can't function normally with them. I would much rather feel the irregular heart beat sometimes then feel like that on the medication. It sounds like the treatment you are getting is working for you and that's great. I would stick with it as long as you feel great. I do not regret getting the previous ablation that I have had. I know how I felt before and I know how I feel now. Yes the heart problem hasn't gone away, just changed nodes but I am a lot better off than I was before. I think we all have to do what is in our hearts. I have read other peoples blogs and how there life is affected by POTS and other disorders. Each person is different. I am lucky to only have IST and POTS. Others have multiple problems. I hope that adding the beta blocker again works for you and you know how you feel and don't let anyone tell you different.

Thank you Lizzegrl. It's is nice to know that I am not alone (not to say I would want this for anyone else). In Dr. Grubb dictation notes he suggested "If her junctional Tachycardia persists, it maybe necessary to perform an AV nodal Modification using radiofrequency energy. Should this have to happen, she will probably need a dual-chamber pacemaker and what we have found as of lately is that the biotronic Cylos pacemaker is capable of measuring blood pressure and is much more physiologic in these settings." You have seen Dr. Grubb and sounds like he is treating your problems. Do you feel confident in his knowledge and his ability as a POTS specialist? When I went there in February, I was hopeful and grateful that I had my diagnosis. He made me feel like I wasn't an idiot like so many Doctors made me feel. He knew everything I was going to ask as if he were in my head already. My Doctor has informed me today that the medication isn't working and that the ablation is the next step. He can't guarantee it will help me and not harm me. That's is why it is important for me to think and find out if this is right. My doctor at Duke is going to contact Dr. Grubb and discuss other options and determine if this is the right course of treatment. But ultimately it is my final decision. I am young and I think that is what makes it the hardest. There is so much I still want to do and see. I know medicine is not a perfect science and we aren't the prefect patients. My mom tells me all the time that she would give me her heart if she could and she blamed herself that this happened. Of course she knows that it wasn't her and it wasn't my fault either. We all go through hard times in our lives and this is one of my times. I have a lot to think about and many answers that I still don't know. I just hope that in the end I make the right decision.

How did you end up with your pacemaker? Was it because of an Ablation? Did you have a junctional rhythm after the ablation? And what treatments have you done or are doing that is helping you by your doctor at Mayo? It is a decision I do not want to make and I need to know what will work and what won't.

My EP is at Duke. He has been really helpful and understanding of my situation. He feels like the ablation should be the last option. I feel the same, however I get to a point were I just want it to go away. I have been battling this irregular rhythm for two years after the last ablation. The medication I have tried does work for some people but for some reason they do not help me. I trust my doctor at Duke because he could see that I had another problem and suspected an Autonomic Problem and that's why he sent me to Dr. Grubb. I have mixed feeling of course with making this decision. I don't want to jump the gun to soon and I don't want to continue to be miserable. I just think there are answers out there and I feel deep down that the complete ablation at this point is my only option. I have other symptoms from POTS which are probably the norm for most people with POTS. I am tired, dizzy when standing or bending down for periods of time (No syncopal episodes yet), Shortness of breath, heat intolerance, etc. I feel that I can handle all of these symptoms with the exception of the irregular heart problem. When I first got my pacemaker it was like night and day. I felt great. Had energy again, felt like myself again. But then the fast rate came back and I have been fighting it ever since. I just think about when the pacemaker was running my heart all the time and how good I felt. My pacemaker is suppose to be running my heart 100% but instead it cuts off and this fast beat from my AV node kicks in and that happens multiple times a day and can last for an hour or more. It makes me weaker and sick to my stomach. I feel that if my heart could be completely ran by a pacemaker that I would not have to suffer like this anymore. I have always been very positive and my friends are very supportive. Even though they don't know how I feel, they have seen me through this whole process. My husband is also supportive. He wants me to do what I feel like I should do but he is scared of what could happen too. All I think about these days, is whether I will feel better one day. I wake up thinking is this the day that it could get worse or how many times will my pacemaker cut off. I hate that you are going through the same situation as me. I would not wish this on anyone. I never thought that I would have heart problems at 26. It is so hard to explain the way you feel to people who don't have the same problem. I really feel that if I had not had the first ablation, I would not be able to work, live somewhat a normal life, and be where I am today. Yes I still have the irregular heart beat but I know that it won't keep me from what I love doing. It has not crippled me yet. I really hope that everything works out in your situation and I know that it will work out for me. I just can't rush myself. thank you April

Thank you for listening. Yes this has been very hard for me and my family. I have had a hard time figuring out where to go from here. I want to feel better and live as much of a normal life as I can. I want to have children one day and do things I use to do. It will get better at some point but I having had this problem going on two years after all the ablations and I'm just ready to figure out the right thing to do. I say to my friends "things could always be worse". I think the reason I am a paramedic is to help others that I can really make a difference in their lives, when I can't in mine right now. Thank you again for your concern because I have the same ones. Apierpoint

MightyMouse Dr. Grubb did suggest that if I continued to have the Junctional Tachycardia and medication wasn't helping, then AV node ablation was an option. From my understanding he hasn't had many pts who have had the ablations done. He did however state that he had one lady in PA that he had to do the AV node ablation and she was doing well. I have called his office in search of this individual and once he remembers her name, his office said they would contact her and give her my name and number. He said she did better after it but I would rather hear it from her myself. I just don't know what I should do. I wish things could be simple. Thanks Apierpoint

My first Diagnosis was IST. My was to the extreme. My Resting heart rate was no less than 130 bpm. Only when I was sleeping it would get around 100 bpm. Any type of movement, walking, lifting, etc.... I was getting to a point where I could not get my heart rate down on my own. I would get over 200 bpm at times and would stay there for a while. I took beta blockers, calcium channel blockers, and ace inhibitors, none of which I tolerated well. Beta blockers made me depressed, lose weight, etc. Ace inhibitors helped my blood pressure but not my heart. One calcium channel blocker I was allergic too. I'm taking one now that isn't working very well. I didn't know when I had the first, second, or third ablation, that I also had POTS. The first thing that Dr. Grubb said was that I should have never had the first ablation. I was worse off in the situation I was in before the ablations. I work as a paramedic and it was getting to a point that I could not care for my patients in the state that I was in. Does anyone else have recommendations for other Doctors who maybe able to help me??? Thanks

I was diagnosed with POTS in February of this year. Prior to being diagnosed with POTS, I was diagnosed with Inappropriate Sinus Tachycardia in 2006. After 3 Ablations and A pacemaker implanted they discovered there was more to the story. My doctors at Duke sent me to Dr. Blair Grubb in Ohio in February and that's when he told me that I have POTS along with the IST. After the last ablation which I still have my pacemaker, he completely damaged my SA node. I am still having problems with a fast heart beat, however it is coming from my AV node (Junctional Rhythm). They have tried multiple medication but no matter what I try the problem has not completely gone away. The next step if this medication doesn't work (which at this point it isn't) is to have a complete ablation. I was wondering if you or someone you know might have the same problems. I am looking for someone who might have had the complete ablation and did it work for you? I'm 26 years old and I want to know that this is the right thing to do. I just want to know if I should have the complete ablation (AV node ablation) and will it help me in the long run. Once I have to surgery there is no going back and I am completely dependant on a pacemaker for the rest of my life and the damage is done. If anyone can help me before I have to come to a decision. Thanks- Apierpoint