I went to an EP- Cardiologist yesterday and thankfully he realized how serious, unpleasant, and dangerous this condition is!
My EKG and blood tests for vitamin/mineral deficiencies and thyroid function (there might be more that he did, but those are the ones i remember) all came back normal. The blood pressure and heart rate tests he did at laying, sitting, and standing came back abnormal, which we knew they would.
He said a tilt table test was unnecessary based on my symptoms and the blood pressure/heart rate tests. Even if it were to have come back negative he said it would be a false negative.
He started me on Midodrine 5mg 3x a day. So far this has helped moderately, but I think I need to increase the dose to 10 mg. The black out spells are less severe, but still present. Also, this has not helped the heart rate issues yet. I am working on getting a blood pressure cuff to monitor my heart rate and BP at home. I will call him in a week with blood pressure and heart rate and go from there.
The doctor also said he may want to add in Florinef, which originally I thought was a great idea, but after researching it I realized that it increases intracranial pressure. This is normally not an issue, but as I also have Chiari malformation this sounds like a very bad thing to do.
I am slightly confused on how to determine which form of dysautonomia I have. He did not say which type it is and I am not sure that it even really matters as they all are treated the same it sounds like... I am guessing it is POTS as this is the one most commonly linked to Chiari, but I am not sure how to be positive of that.
Sorry for the lengthy post! Also, I just realized there is not actually a question anywhere in there! If anyone has any input on any of this or suggestions on how to proceed I would greatly appreciate it!
Thank you!
Sara