StephanieF

I started fainting when I was 5 years old. I've had POTS ever since and I'm 43 now. I wasn't diagnosed with POTS until five years ago. I've just lived with the symptoms--what could I do since no doctor in the span of over 30 years was ever able to diagnose me (and I went to a million doctors and had so many tests)? I'm on Florinef now so that helps but I am trying to find out more to deal with symptoms.

Wow--this was great to read! (Newbie here) My whole life I thought it was only me who got anxiety related to POTS. That's how I've always explained the story of my panic disorder--that it started with POTS and fainting and being so afraid I'd faint as a child. I still have an anxiety disorder and I still have POTS. It's hard not to be anxious when you are always afraid you're going to faint! You don't want to be alone if you're going to faint. Also you don't want to make a scene in a public place if you're going to faint or feel faint and want to do something to take care of your symtoms like elevate your feet. How am I going to do that in public?? Anyway, it's just so good to finally not feel alone with the anxiety/POTS struggle. I am always pushing through anxious situations for exposure. It's a lifetime battle. I make slow progress every day. The whole thing about the "fake" symptoms and the real symptoms really resonates with me. Sometimes it's hard to tell. But the really real warning signs are loud and clear so need to just focus on those. It's a hard balance since we don't want to faint. Fainting to me is horrifyingly scary. Not the actualy fainting but the way I feel and the way my senses go haywire going into the faint and waking up I just think is about the worst thing in the world. Waking up I can hear before I can see and everything seems to be like a strobe light. Just awful. But no, not going to die from it!

I am new here. Funny, because I believe I've had POTS at least since I was 5 years old! Five years ago at age 38 I was diagnosed with POTS from a cardiologist who did a Tilt Table Test on me and sent me on my way. He did not treat me and blew me off. I was seeing an alternative medical doctor at the time who prescribed me Florinef. It has really helped but not completely. I haven't seen a doctor for POTS specifically since I didn't know anyone who treated my condition. I a physician in close proximinty on this website who lives kind of near me and I was so looking forward to some help with my POTS! I was wondering if anyone could help me understand what my next step's should be. I saw he got good reviews on the internet, so I am very, confused. My first visit, before actually seeing me, the doctor had the technician do all sorts of tests on me including an hour-long heart sonogram, a breathing test, and an EKG. He was very interested in me as a patient the first time I saw him. I actually felt like a "Training Subject" because it seemed he was training another doctor there. He was like, "Ooh! Look at this and that!" I was very excited that someone could finally help me. Then, the next visit I did a Tilt Table Test (again I know--I figured I'd go along with it because he said he wanted to test the blood pooling in my extremities which he had observed in my physical examination the time before). Let me just say that he gave me absolutely NO INDICATION that he wouldn't work with me; he seemed completely on board with helping me, even telling me about medications he would like to see me on to help with the blood pooling. After the TTT, he was very short with me, saying that I did NOT have POTS (as the numbers of my heart rate/BP didn't meet the criteria) and that I should go to the clinic in Vanderbilt or Mayo Clinic in MN to figure out what autonomic disorder I had. Um...I've never hopped a plane to go to a doctor's appt. before! Seriously?? He said he ONLY treated POTS patients. I argued saying that three other doctors have diagnosed me with POTS and that I had only stopped the Florinef for 36 hours (even though he recommended 48 hours but the timing wasn't quite right in my med schedule) so it was probably in my system. I know it took at least a week for the Flornief to work to its full effect so I would imagine it would take that long to leave my system. The Florinef helps with my POTS symtoms so I figured that's why that TTT came out negative. He had already made up his mind and wasn't listening anymore, gave me a handout on Vanderbilt and sent me on my way. This was very upsetting! Since he was not going to see me any longer, I decided to pay the $25 fee at that time to get all my records for another doctor to see me. He had done thousands of dollars worth of testing on me and I wanted those to pass on to someone else! I got my records today (after having to call and remind them to send them to me) and I see all sorts of notes and testing on Ehrler's Danlos Syndrome. He NEVER mentioned EDS to me. The only way I know about EDS is because a friend of mine has it and we have been sharing our POTS stories/symptoms. I immediately called her and she seemed to think there were indications that I might have EDS type 3. Hypermobility and soft skin among lots of other symptoms. Shouldn't he have mentioned this possible diagnosis to me?? I have no idea if I have EDS. My friend recommmended to see a geneticist. In any case, what on earth happened at that appointment? Are there other autonomic disorders other than POTS? I am very confused. Again, I am very new to doctors and POTS. Every single doctor I have ever seen has blown me (and my mother when I was a child) off with my symptoms of fainting, heat intolerance, etc. The only one who tried to help me was the alternative doctor who gave me the Florinef (God bless him!). He and a Neurologist did a lying and standing BP/heart rate test in the office and both thought I had POTS. When I got the medical records (this week) from the first TTT done by the other cardiologist to "prove" to the other doctor that I actually had POTS, it said "Possible POTS" as the summary but in the office five years ago he told me I did have POTS. Unfortunately there are no numbers on the first TTT records. I will have to go to the hospital that did the test to get the full records if they are available--found this out today after waiting a week for the medical records person at the office to come back from vacation. Sigh. My friend with EDS and POTS said that she sometimes "fails" and "passes" TTTs for POTS depending on how she's feeling that day so they are not the most reliable tests. You would think that the POTS specialist that I saw would know that so why he relied so heavily on that one test in his office bewilders me. Anyway, thanks for reading. Sorry so long. Any help or suggestion are welcome (but I need some support right now as this was a crazy and stressful expereince).