Questions To Ask Doctor

[tpots]

I have recently been diagnosed with POTS, but have had it at least 20 years. Finding this site has been a tremendous source of information, insight and encouragement for me the past 2 months. I am very grateful for that. I had intended to post weeks ago, but just never seem to have felt well enough. When I was, I didn't want to be on the computer, or was able to find information I needed on many of the posts on this site.

My neurologist, who is very familiar with POTS, informed us that we have a definite positive diagnosis for POTS. He told us to go home and research it, gave me Provigil to "wake" me up enough that I could take Midodrine (I was sleeping at between 14 - 18 hours a day), which I was supposed to take after being on the Provigil two weeks and seeing the cardiologist. He wants me to see a specialist in Toledo and then probably go back with him at least once a year. He also scheduled a lengthy appointment for us to come back with all of our questions after I had been on the meds for a while. That appointment is tomorrow, and though I have had tons of questions and always had good intentions to write them down, I am now at a loss of what I should be asking.

I have been through a gammet of emotions, from being relieved to finally understand what is going on with me, to being totally discouraged that there is no cure and that things have progressed so much the past 2 years, to being in complete denial and thinking perhaps he has the diagnosis wrong (sorry about the run-on sentence). Sometimes I think it has helped me to know what is going on when I feel I can't breathe or that my heart is doing flip-flops. And, other times I think it is worse knowing and that I am focusing too much on it. At any rate, I don't want to go in and discuss my range of emotions, but rather want to make sure that I get information that I need.

Gonna have to send this now as we're in the middle of a bad thunderstorm and may lose power. Any ideas on what I should be asking my doctor would be appreciated!

Thanks!!

[tpots]

wanted to add while I still have power....he also had me start wearing compression stockings, which have been a tremendous help, and I learned from here and from the cardiologist to drink tons of water ~ also helping!!