autumnleaf Posted October 5, 2006 Report Share Posted October 5, 2006 I guess I should introduce myself, since I joined this forum a couple of days ago. I was just diagnosed with POTS by a cardiologist, however he said that there was nothing he could do, my heart was healthy. He said if I started fainting all the time I could go to a nuerologist. My younger sister was diagnosed with POTS a year ago and has been pretty bad off. She hasn't been to school in over a year. So I do know that the cardiologist I went to doesn't really know anything about POTS.My sister has been through a variety of treatment and nothing has helped her. I figure we must have a genetic form and I'm afraid I wouldn't have any luck with treatment, either. Becase of this (and my beliefs) I have decided to try some natural medicine before pursuing medicine. If I don't have any luck I will have to try to get a referal to a neurologist and go from there.Anyway, I really just wanted to introduce myself and say hello. Quote Link to comment Share on other sites More sharing options...
Ernie Posted October 5, 2006 Report Share Posted October 5, 2006 Hello,Welcome aboard. Quote Link to comment Share on other sites More sharing options...
BuddyLeesWife Posted October 5, 2006 Report Share Posted October 5, 2006 Hi,I do want to give you some hope for your own treatment. My husband is an identical twin and his brother also has NCS. They do share some symptoms but they also each have some that are specific to them and not "enjoyed" by the other. In general, my brother-in-law has much more frequent and severe symptoms while my husband's are mostly under control. Even some of the medications differ between them, although if it works for one of them it is at least worth a try for the other. It is really important that you find a doctor that is familiar with this disorder - good luck to you and your sister. Quote Link to comment Share on other sites More sharing options...
Guest sonotech Posted October 5, 2006 Report Share Posted October 5, 2006 Welcome!I was informed that MOST cardiologist do not know about POTS!! (scary, huh?)Is there an ELECTROPHYSIOLOGY CARDIOLOGIST in your area? They have more knowledge in these areas. Quote Link to comment Share on other sites More sharing options...
bttrflyamby1981 Posted October 5, 2006 Report Share Posted October 5, 2006 Welcome!!!!!! Amber Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted October 5, 2006 Report Share Posted October 5, 2006 Welcome!My understanding is that there are very few POTS cases that do not respond to any treatment. Treatments include a wide range of meds as well as lifestyle changes, diet etc. Even things as simple as increasing fluids and salts. I also would suggest being evaluated by an electrophysiologist--a type of cardiologist who has expertise in heart rhythm and is usually at least familiar with POTS/autonomic dysfunction.As someone who has wasted money pursuing alternatives, please be careful with "alternative" treatments (by alternative I am thinking you mean remedies prescribed by naturopathic or other healers). They can be costly and not effective--or worse, possibly dangerous. These treatments are not subject to the scrutiny that mainstream medical treatments are--as far as proof of efficacy and safety.Take care,Katherine Quote Link to comment Share on other sites More sharing options...
mom4cem Posted October 5, 2006 Report Share Posted October 5, 2006 Welcome, hope you can find a dr. who understands this syndrome. Quote Link to comment Share on other sites More sharing options...
JenniferInOhio Posted October 5, 2006 Report Share Posted October 5, 2006 Welcome! Quote Link to comment Share on other sites More sharing options...
autumnleaf Posted October 5, 2006 Author Report Share Posted October 5, 2006 Thanks for all the welcomes!Finding a doctor may be tricky, as there are no electrophysiology cariologists here. I have to find out if there is one in another city around here.By alternative medicine, I mainly mean orthomolecular treatment. I'm not really concerned about whether or not mainstream medicine "approves". I find that the AMA is very resistant to alternative treatments, even when there is published research. Quote Link to comment Share on other sites More sharing options...
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