Tiffany

Thanks so much, Corina and Katcanny! I'll post questions as I think of them. It is definitely helpful not to feel alone in going through this. Katcanny, I'm sorry to hear about your time in the hospital but glad you're on the mend. Tiffany

Hello, I’m so thankful to have found this group, and thought I’d introduce myself. I was just diagnosed with POTS less than two weeks ago, after a TTT. I had been healthy and active until early spring of this year, but became anemic and hypovolemic in early June and things rapidly went downhill from there. I saw multiple doctors and had two trips to the ER due to extreme shortness of breath, tachycardia, and a variety of other symptoms. I was in bed or couch-bound for months, except for doctor visits. For awhile, it seemed the medical world thought I was just making too big a deal of my anemia symptoms, but I found a great primary care doctor who was understanding and told me we would figure out what was happening. The anemia was resolved by September, and many of my symptoms lessened, but I was still spending most of my time on the couch due to a lot of shortness of breath, fatigue, and the need to sit/lie down anytime I tried to do much. Finally, my primary care doctor suggested it might be POTS and sent me for a TTT, which confirmed it. I feel very lucky to have this doc, as I know most people have to wait much longer for a diagnosis. My doctor wants me to see neurologist Amy Hohler in Boston, but I was given an appointment for early May and told to keep calling back to see if there’s anything sooner! So that’s pretty disheartening, as I feel like I need to make progress instead of just waiting in my current state for the next 5+ months… It seems like a lot of folks here see cardiologists and neurologists — is that fairly typical for POTS patients? I’m wondering if I should try to at least see a cardiologist sooner. Meanwhile, I’ve been drinking 3L of water every day and eating lots of salt for the past few months, and have also been wearing compression stockings. My family has been wonderful through this, and I’m very grateful for their support, but it’s been rough for my husband and son to suddenly have to take on so much more and deal with such an abrupt change in our quality of life. We all thought we were dealing with a short-term illness, which unfortunately turned out to be something much longer-term. Anyway, it’s great to have this forum and to be able to learn from others with POTS. Best, Tiffany