Hutch Posted February 5, 2019 Report Share Posted February 5, 2019 So I just seen a new cardiologist today, do to chest pain and shortness of breath. He is aware of pots. I told him about how high my heart rate gets, for instense if I’m sitting a while and get up to pee. it gets 160 if I stand long enough it’s comes down to 130/120 if I take a shower I sit in the shower but when I stand to get out heart rate a lot of times is 190, slowly comes down to 120 140 just depends on its moon seems like. If i sit it comes down fast. To around 95 longer I sit the lower is can get. Well he wants to send me a ep guy to get a ep study. Iv seen one ep cardiologist before this guy. That didn’t know crap about pots and wanted me to go threw with a ep study. I said I’m going to a dysautnomia speachlist first. Witch I did and had a ttt that confirmed pots, and the Nero said I didn’t need a ablation or a ep study I have pots, witch I believe to be the problem, but all these cardiologist iv seen counting one in the e,r witch makes three total say I need it done to rule other things out. But when I say how come it’s only when I’m standing they got no good answers. Another thing iv heard out of them do you exercise are you sure you’re not Deconditioned. witch makes me want to snap. When this started I was working for a Commercial construction company, building 6 story 55thousand barrel whisky warehouses. witch it’s all built out of huge green lumber I was packing lumber that weighed over 100 pounds climbing swinging 10 pound sling hammers pack out stacks and stacks of walk boards that Weighed around 200 pounds one guy on each end these would last three days, every last Thing about it was heavy and hard physical work, also all the flights of steps to get up and down the building. So I was working out hardcore ever d*** day, and just keep getting worse and worse my heart would beat in my throat all day, i was literally telling my self pick your feet up In my hand I stopped talking as I work as I needed the extra air, I finally got to were walking up the steps was all I could do. So forgive me but I know exercise ain’t the fix, if it was I wouldn’t be here typing this. I just want scream like exercise is a cure and we’re just to lazy to do it. Lol but back to my point have you had a ep study? We’re you ever told you needed one? Did you end up with a ablation? are you better or worse now? I’m not scared of the procedure I’m scared I may end up worse then I em, witch I cannot afford to do as I’m pretty d*** near useless as it is. But at the same time I’m desperate to get better, Quote Link to comment Share on other sites More sharing options...
StayAtHomeMom Posted February 5, 2019 Report Share Posted February 5, 2019 I am not sure what an EP study consists of. But if they keep suggesting it I would go for it. More data is always helpful. Even if it just rules things out. POTS is not a disease itself. It always has an underlying cause. Possibly the cardiologist has never seen a person with POTS or doesn't believe in it. I started seeing a shrink recently to diagnosis my ADD and OCD officially to help me apply for disability and she is currently in school. She told me she vaguely remembered something about it and said she would have to look into more. And she not only works there she works as a cardiologist's assistant. Personally I would shy away from the procedure. But most testing is harmless. Especially if there is staff there to help you if your body freaks out. Quote Link to comment Share on other sites More sharing options...
MeganMN Posted February 5, 2019 Report Share Posted February 5, 2019 Have you had a holter or event monitor? If not, it seems that should be first. An EP study might be in a cath lab where they actually go in under radiology and look at the electricity of the heart and determine if anything is out of whack. I think it is good they are looking for other things. I think many of us, if a cause or reason could be found, would want to sort it out! That being said, I am personally am getting more leery of docs and their rabbit trails! Quote Link to comment Share on other sites More sharing options...
Hutch Posted February 5, 2019 Author Report Share Posted February 5, 2019 11 minutes ago, MeganMN said: Have you had a holter or event monitor? If not, it seems that should be first. An EP study might be in a cath lab where they actually go in under radiology and look at the electricity of the heart and determine if anything is out of whack. I think it is good they are looking for other things. I think many of us, if a cause or reason could be found, would want to sort it out! That being said, I am personally am getting more leery of docs and their rabbit trails! Yes that’s what a ep study is. I am for sure leery of doctors and test as, when you have good health insurance, at the end of the day that’s how they pay there bills, there is people that didn’t have pots but end up with it after a ablation, but I don’t have that worry tho lol I had dysautnomia issues since 15 I’m now 27 that’s Why I’m Leery of it I have so many other wierd symptoms that are there when heart rate and blood pressure are perfect, so I know I have other problems. Quote Link to comment Share on other sites More sharing options...
Hutch Posted February 5, 2019 Author Report Share Posted February 5, 2019 26 minutes ago, StayAtHomeMom said: I am not sure what an EP study consists of. But if they keep suggesting it I would go for it. More data is always helpful. Even if it just rules things out. POTS is not a disease itself. It always has an underlying cause. Possibly the cardiologist has never seen a person with POTS or doesn't believe in it. I started seeing a shrink recently to diagnosis my ADD and OCD officially to help me apply for disability and she is currently in school. She told me she vaguely remembered something about it and said she would have to look into more. And she not only works there she works as a cardiologist's assistant. Personally I would shy away from the procedure. But most testing is harmless. Especially if there is staff there to help you if your body freaks out. Google ep study they thread a catheter up a leg Vain into your heart, check to see if you have a extra electrical pathway in your heart, if you do they burn it out. You Contradicted you’re self you first said if they keep suggesting it I’d go for it, then toward the end said I personally would shy away from the procedure lol thinking about just flipping a coin Quote Link to comment Share on other sites More sharing options...
StayAtHomeMom Posted February 5, 2019 Report Share Posted February 5, 2019 27 minutes ago, Hutch said: Google ep study they thread a catheter up a leg Vain into your heart, check to see if you have a extra electrical pathway in your heart, if you do they burn it out. You Contradicted you’re self you first said if they keep suggesting it I’d go for it, then toward the end said I personally would shy away from the procedure lol thinking about just flipping a coin I meant shying away from ablation. But getting the EP study. Can't they see extra electrical pathways any other way? Quote Link to comment Share on other sites More sharing options...
Hutch Posted February 5, 2019 Author Report Share Posted February 5, 2019 47 minutes ago, StayAtHomeMom said: I meant shying away from ablation. But getting the EP study. Can't they see extra electrical pathways any other way? That’s the only way. If your going threw with a ep study, there already in there, so if they found something that needed ablation you’re locked in at that point. Quote Link to comment Share on other sites More sharing options...
Pistol Posted February 5, 2019 Report Share Posted February 5, 2019 When my POTSX first started the halter monitors ( many of them ) showed sinus tachycardia up to 180's and PVC's. So I had a stress test and two TTT's. I subsequently saw 5 cardiologists ( 2 of them were EP's) but no one ever suggested an EP study ( I would have refused it anyway ). I understand that they want to rule out certain arrhythmias first but I would do a monitor first. Not every tachycardia requires an EP study but many EP's feel that they have to order certain tests as part of their protocol. Some docs have been sued for neglect by NOT ordering certain tests so I believe that in some cases they are just covering the bases to show that they did something to treat you. In the perfect world it would be advisable to get every test there is to get to the bottom of things but then again - POTS is not that clear cut. Weigh your options and decide what you feel is best for you . Quote Link to comment Share on other sites More sharing options...
Hutch Posted February 5, 2019 Author Report Share Posted February 5, 2019 a hospital I was imminent in that my original ep doctor worked for ordered a 30 day halter monitor, and the original ep doctor had not even checked it, and still wanted to do a ep study. Iv noticed since getting insurance places seem test happy, But I really feel sure a ep study is a unnecessary for me, but I swear the impression these cardiologist give is pots is a mild issue so must be something else going on. But I know that’s not true. Quote Link to comment Share on other sites More sharing options...
StayAtHomeMom Posted February 5, 2019 Report Share Posted February 5, 2019 4 hours ago, Hutch said: a hospital I was imminent in that my original ep doctor worked for ordered a 30 day halter monitor, and the original ep doctor had not even checked it, and still wanted to do a ep study. Iv noticed since getting insurance places seem test happy, But I really feel sure a ep study is a unnecessary for me, but I swear the impression these cardiologist give is pots is a mild issue so must be something else going on. But I know that’s not true. POTS can be mild. But if it was mild we wouldn't be at the doctors so much. My mom mentioned POTS to her PCP and her PCP shrugged it off as it isn't bad if she takes her meds. Honestly I am better then I was 2 years later but I am still not where I wish I was. Meds only helps so much. But if I am careful and avoid triggers I can have a life. Which is considerably better than where I was. Quote Link to comment Share on other sites More sharing options...
Jessica_ Posted February 5, 2019 Report Share Posted February 5, 2019 I had a heart ablation 2 years ago (which is a EP study) and it wasn’t bad. My pots was induced by SVT so my situation was a little different. If you have a true arrhythmia your heart will usually be going 200+ beats per minute and it won’t matter if you are standing, sitting, or laying down. It won’t stop until the heart gets back on the SA node. I would definitely do you research and make sure you feel good about moving forward. But don’t be scared of the EP study. I was terrified and was sure I was going to die and then it wasn’t a big deal, some doctors even keep their patients awake for it. The hardest part was the soreness in my legs (where they insert catheter) and not being able to life anything for 3 weeks. Good luck let us know what you do! Quote Link to comment Share on other sites More sharing options...
Hutch Posted February 5, 2019 Author Report Share Posted February 5, 2019 40 minutes ago, Jessica_ said: I had a heart ablation 2 years ago (which is a EP study) and it wasn’t bad. My pots was induced by SVT so my situation was a little different. If you have a true arrhythmia your heart will usually be going 200+ beats per minute and it won’t matter if you are standing, sitting, or laying down. It won’t stop until the heart gets back on the SA node. I would definitely do you research and make sure you feel good about moving forward. But don’t be scared of the EP study. I was terrified and was sure I was going to die and then it wasn’t a big deal, some doctors even keep their patients awake for it. The hardest part was the soreness in my legs (where they insert catheter) and not being able to life anything for 3 weeks. Good luck let us know what you do! Do you still have pots? Quote Link to comment Share on other sites More sharing options...
Jessica_ Posted February 6, 2019 Report Share Posted February 6, 2019 6 hours ago, Hutch said: Do you still have pots? Unfortunately yes. However, my pots symptoms did improve after the ablation and it took about a year for most of my symptoms to subside. My pots is manageable now and I’m pretty high functioning compared to when all this started. Quote Link to comment Share on other sites More sharing options...
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