Trying Posted January 23, 2019 Report Share Posted January 23, 2019 Please anyone, is there any cardiologists who treat Orthostatic Intolerance or POTS/low blood pressure near Wichita, KS? How do you find a doctor who will understand low blood pressure (sometimes higher heartrate) on standing and prescribe Midodrine/Fludrocortisone etc? I looked on all the official lists, but there is no one listed for Kansas and came up empty with google searches. Will a regular cardiologist be unable to treat our daughter? Quote Link to comment Share on other sites More sharing options...
Hutch Posted January 23, 2019 Report Share Posted January 23, 2019 I would look for a neurologist that deals with dysautonomia in your area not a cardiologist. They can prescribe meds needed to help, Quote Link to comment Share on other sites More sharing options...
Pistol Posted January 23, 2019 Report Share Posted January 23, 2019 What I have done is call the major hospitals in that state and ask for doctors that are familiar with dysautonomia ( cardiologists more often than neurologists in my experience ). You can also ask your daughters cardiologist if he can recommend someone - sometimes they will take the time to do that. Quote Link to comment Share on other sites More sharing options...
Clb75 Posted January 23, 2019 Report Share Posted January 23, 2019 Electrophysiologists are the specialty type of cardiologists who typically treat dysautonomia. You can make some calls to local offices and ask if their doctors treat autonomic disorders. Quote Link to comment Share on other sites More sharing options...
Hutch Posted January 23, 2019 Report Share Posted January 23, 2019 9 hours ago, Clb75 said: Electrophysiologists are the specialty type of cardiologists who typically treat dysautonomia. You can make some calls to local offices and ask if their doctors treat autonomic disorders. 9 hours ago, Clb75 said: 9 hours ago, Clb75 said: I was sent to a electroplysiologist a well known one in my area. When I brought up I’m sure I have pots. He wouldn’t even here me out, said if I did I’d be passing out everytime I stand up lol only 30 percent of people pass out who have pots. wanted me to go threw with a e.p study, said if that didn’t show anything maybe we could look into a tilt table test. I laughed yea let’s do an invasive procedure First. I had already had appointment sent up with a nuro that specializes in dysautonomia , that following month. told him I’ll see what he says, will he confirm pots from ttt. It’s not a heart problem why go to heart doctors for it. A electrophysiologist is a heart doctor that specializes In the electrical pathways of the heart. Not what are issues are, not saying you won’t run into some. that are also knowledgeable about dysautonomia, but I do know you can run into those that are not. Not going have that chance with a dysautonomia specialist. Quote Link to comment Share on other sites More sharing options...
Pistol Posted January 24, 2019 Report Share Posted January 24, 2019 @Hutch - I hear you!!! I had a TTT done by an EP who said that I am hysterical, that I need to stop taking my BP so much and stop the BB because I am completely healthy. My PCP had told me I am not allowed to drive due to seizures and syncope but the EP said to go ahead and drive, it's all in my head. Later the autonomic soecialist determined that the so-called normal TTT was clearly positive for POTS b/c my HR went up to 130's the whole time. So - EP does not mean they understand dysautonomia. And I agree - why do an EP study before a TTT? Good for you to not go through with his recommendations. I hope the neurologist will come up with some answers for you. Quote Link to comment Share on other sites More sharing options...
Clb75 Posted January 24, 2019 Report Share Posted January 24, 2019 In general, electrophysiologists are the type of cardiologists that treat dysautonomia rather than say a general cardiologist or interventional cardiologist because EP’s treat the symptoms most common to dysautonomia such as dizziness, syncope, tachycardia etc. Autonomic neurologists also treat dysautonomia but appear harder to find in a lot of cases. I’m sorry you’ve both had negative experiences with EP’s and TTT, but I think that is more specific to the individual doctor than the field as a whole. In my case, I’ve actually had the opposite, I’ve had an overall positive experience with my current EP and the two TTT’s I’ve done. I think it is so specific to each person, and you really have to do your research when seeing a new doc and keep trying to find a new one if the current one isn’t working out. Quote Link to comment Share on other sites More sharing options...
Hutch Posted January 24, 2019 Report Share Posted January 24, 2019 6 hours ago, Pistol said: @Hutch - I hear you!!! I had a TTT done by an EP who said that I am hysterical, that I need to stop taking my BP so much and stop the BB because I am completely healthy. My PCP had told me I am not allowed to drive due to seizures and syncope but the EP said to go ahead and drive, it's all in my head. Later the autonomic soecialist determined that the so-called normal TTT was clearly positive for POTS b/c my HR went up to 130's the whole time. So - EP does not mean they understand dysautonomia. And I agree - why do an EP study before a TTT? Good for you to not go through with his recommendations. I hope the neurologist will come up with some answers for you. I cringe everytime I read someone recommending findin a ep doctor. I can understand if they recommend one they had luck with personally. Witch is what it is luck. Theres pots patients with ablations they didn’t need. Witch in turn makes them worse. No reversing that once it’s done it’s done. I’m far from well but I’m better then I was, thanks to the specialist. But as we all know there only so much they can do. After that it’s hope are body’s come around. Quote Link to comment Share on other sites More sharing options...
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