heissovereign Posted February 11, 2012 Report Share Posted February 11, 2012 Beyond frustrated.. I should have known this would happen. I got a report in the mail from cardiologist saying my holter showed in significant abnormalities so no need for further testing or medication changes. But yet I can't even carry my nine month old because of the fluctuations in my hr. It will go from 40-80 while sitting without any strain and then drop back down to 40. And on standing will spike 40-60 bpm and seems to be getting worse. Does anyone know of a doctor experienced or even sympathetic with dysautonomia. Anyone in the area of ms, this has been 18 years. And I just want to be able to play with my kids, and to just at least have treatment for symptoms but they just give up. Quote Link to comment Share on other sites More sharing options...
Katybug Posted February 11, 2012 Report Share Posted February 11, 2012 On this website in the Pots Place link, there is a list of docs by state that treat dysautonomia. You could start there. Hope you feel better and don't let this cardio discourage you. The first cardio I saw, after speaking to me for a whole 3 minutes, told me he was sure 90% of my troubles would go away if I would just commit to walking a 1/2 hour every morning. He was FIRED! And, I went and found a doc who cares and she ended up being an angel. Don't give up. Quote Link to comment Share on other sites More sharing options...
McBlonde Posted February 11, 2012 Report Share Posted February 11, 2012 Beyond frustrated.. I should have known this would happen. I got a report in the mail from cardiologist saying my holter showed in significant abnormalities so no need for further testing or medication changes. But yet I can't even carry my nine month old because of the fluctuations in my hr. It will go from 40-80 while sitting without any strain and then drop back down to 40. And on standing will spike 40-60 bpm and seems to be getting worse. Does anyone know of a doctor experienced or even sympathetic with dysautonomia. Anyone in the area of ms, this has been 18 years. And I just want to be able to play with my kids, and to just at least have treatment for symptoms but they just give up.I don't know what area of Mississippi you are in, but Dr. Thompson is in Pensacola. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted February 11, 2012 Report Share Posted February 11, 2012 Does he actually have POTS? Quote Link to comment Share on other sites More sharing options...
issie Posted February 11, 2012 Report Share Posted February 11, 2012 Does he actually have POTS?Yeah that doctor actually does have POTS. He and his daughter. He was on the DVD that was put out a few years ago. I don't think it's available any more. (If, it is I want one - gave mine to a doctor.) But, they say - he sees patients according to how he is that day. So, if you have to travel to get there - might be good to stay awhile. I understand he's really good. Since I'm orginally from Mobile, AL -my parents are still there. Thought about seeing him myself. Never hurts to get another opinion.Issie Quote Link to comment Share on other sites More sharing options...
Brye Posted February 12, 2012 Report Share Posted February 12, 2012 Sorry, sounds like it's time for a new doctor! It's extra difficult when you have kids to keep up with. I have 4 and that's been the worst part, not being able to keep up with my kids. SO FRUSTRATING! I had one doctor who told me just to drink a ton of gatorade and follow up in a year and I would be just fine. Then when I asked him to fill out a return to work note (ER nurse) he refused saying I was too sick. He's no longer my doctor. Hope you find someone who can help!!Brye Quote Link to comment Share on other sites More sharing options...
heissovereign Posted February 12, 2012 Author Report Share Posted February 12, 2012 Thank you all, I am looking for a new one. A friend stumbled upon a upper cervical chiropractor, and from what she said he explained all about dysautonomia. He did her adjustment and she has had some benefit. She started having symptoms of pots right after a neck injury in a wreck, and has fibromyalgia.Now my issues started at a young age and not after any neck trauma, so would this even help? Or I mean since he understands autonomic dysfunction, could it hurt going to him? She told me he uses this instrument that you hold onto while resting that through the things that it measures like the hr and respirations and such that his system can tell him whether you are dominant sympathetic or parasympathetic. She was the latter. Now i dont have a definite dx besides dysautonomia and ncs due to lack of testing, but i have issues with everything the ANS controls. So what do y'all think would this be a waste? Lol right now I'm wasting time with my cardiologist. See I was thinking that since he knows and understands the ans maybe he could at least put me on track with a doc who could help, and consult is free. she said he was the first doc who didn't treat her like she was faking. I ultimately know that I can't expect to have same results, but what can it hurt? Quote Link to comment Share on other sites More sharing options...
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