The first cardiologist that completed my testing, I did not care for. He did not explain anything to me, and did not even tell me what he officially diagnosed me with, just told me it was a type of dysautonomia. After my tilt table test, he said the test was over, he was prescribing me a medication called midodrine and I was to take it three times a day, drink a lot of water and eat a lot of salt, then he left the test room. I had to look at the test notes on my online health portal to see what the official diagnosis was. Then I did a bunch of research on the topic on my own. I definitely don’t want to go back to him.
When the new symptoms started getting worse, that’s when I went to the second cardiologist for a “second opinion”. He was a lot more open to talking about, and educating me on my diagnosis. He is also the one that said I don’t need the Midodrine, especially since I was having a lot of terrible side effects from it, but prescribed a beta blocker instead. He told me he would agree with the first cardiologist on the diagnosis given to me. He also said he thinks a lot of dysautonomia patients get better or even recover completely, with therapies such as: compression socks, water, salt, and exercise.
I have concerns that there is an underlying condition that is causing my dysautonomia. Such as an autoimmune disease perhaps. I did ask the second cardiologist about this, and he said it’s possible. But yet neither of the cardiologist I’ve seen have been concerned about my symptoms. It’s almost as if they believe 1. dysautonomia isn’t disruptive, 2. there can’t be an underlying cause possibility, and 3. I’m young so there should be no more testing done because statistically I will be okay.
I guess I have not been to many different doctors at this point, but I already feel overwhelmed by finding a doctor, going to the appointment and then not really getting anywhere with it. The beta blocker medication has probably been the biggest game changer. But I would like to dig deeper and figure out some causes if possible. Or figure out if I just have this and that’s that.
I don’t really want to start down the rabbit trail of going to doctor after doctor, only because I feel like they start to label you with anxiety after awhile. Then they really don’t take you seriously. I will look into getting an appointment with a dysautonomia specialist. Even if it’s a long wait, it’s likely to yield the most help. I appreciate all the thoughts and help, honestly it helps to just know I’m not alone and it’s frustrating for others too.