exhaustedcollegestudent

I can only speak from my own experiences, and I have not met anyone else with POTS personally, so I hardly can compare . . . But, I went through POTS while going through puberty back in middle school/high school, and I never felt dizzy all the time. I would have "spells" while at gym classes, walking long distances, standing for a bit of time, or when I felt over-heated . . . all of which still exist, but for me the dizzy spells were more frequent for me at that age. As I've been told on here, you have to push for what you want . . . so if you don't think enough is being done push harder and harder. You always hear those stories about people knowing something was wrong with them, and feeling as if the answers they were given were not good enough, so they kept looking for someone else to give them a better answer. POTS is rather flighty in diagnosis, because it is a syndrome, so many times there can be other diagnosis connected on top of it, plus everyone handles it a bit differently. I wish your daughter all the best. Sincerely, Adrienne

Thank you all for responding. I think one of the most difficult parts is growing up. Back in high school, my mother would go with me to every single monthly appointment with the neurologist or cardiologist. I had become so scattered brain and everything about POTS becomes so second-nature, I would completely forget I had an episode within an hour or so, but my mom would always remember . . . and always would jump in. Now, I live quite far and you're right, it's far more difficult trying to talk to a doctor when you are a 21 year old, female, and the majority of the time I question if they even think POTS exists. I've been on proamatine (10 MG, 1 pill, 2X day), fludrocortisone (.1MG, 2 pills, 2X day) for the majority of the time I've been diagnosed, except for one year when I decided to give-it-go by taking nothing. Does anyone else get tingling of the brain with either one of these? I've always taken both together, but the tingling has increased in area since I first started taking it. A month ago, I was placed on alprazolam (.5MG, whenever I know I will have an episode or during one), but I decided not to take it after the third-go- it made me even more exhausted . . . and the only reason, I decided to start seeing someone down here was b/c of my fatigue. A week ago, I was placed on propranolol (10MG, 1/2 table, 1X day), took it once and felt tired . . . but realized I felt a lot less anxious in my classes. But they never told me to take it with or without the proamatine/flud., so I waited for the nurse to call me back and never did . . . then today I was told to taper off everything within the next 6 weeks. I used to have tilt table tests done every month or two months back in early high school years, but I had trouble with the neurologist due to his disinterest in me as a patient, because I did not faint or become dizzy during the tests. Once I moved to the cardiology department, I never had a tilt table test done again. I have had two, 24 hour heart monitor tests, endless EKGS, and I had a echo cardiogram today- they found no problems, other than the flapping of something was almost adnormal . . . but did not meet all the criteria, so in his word, "what does this mean for you, nothing." He has referred me to a different department to get a CT scan done, so I should hear back in the next week to schedule an appointment. I'm stubborn, and whenever I have these terrible visits it makes me want to go run a mile, have my body crash like it used to, and go "see!" I know I don't have full blown symptoms anymore, but it's because I cut a great deal out of my life. I live in a bubble. Do they expect you to burst the bubble to grab their attention? Seems ridiculous that when you do the right things, it's unimportant. I thought being young and sitting in a cardiologist's waiting room was enough to grab their interest . . . who knew they did it for the "thrills"? I feel terribly sorry about venting this much in one day, but it helps just to write it out. Sincerely, Adrienne

Hi there. This is my first day on here, and finished up my first cardiology appointment since I moved to Florida over two years ago. I'm a college student, and I was diagnosed with POTS syndrome seven or so years ago- and yet everytime I have to see a new doctor, they act like maybe all the doctors before have been wrong all these years, and maybe it's not POTS. I'm struggling with atrocious fatigue, which makes life difficult when my academia studies consist of reading and writing entirely. I've given up a lot this semester, and do nothing but blankly stare at the items I'm supposed to reading, but can't seem to focus/stay awake. I described this to the new cardiologist today, and he wants to take me off my medicines to see if it helps, though I did that for a full year, and felt no difference. I started to tear up and cry a bit, and he then asked me if I have ever seen a psychologist/psychiatrist . . . and that maybe all this stems from depression? When did crying equate immediately to depression? Frankly, I'm far from it . . . but absolutely frustrated. It seems, because I'm not fainting or coming close to black-outs . . . since I stopped exercising seven years ago that it's not important and always phrased as "an annoyance in life, but nothing threatening." I've read this forum many times over the years, and I know my symptoms hardly compare to the majority . . . but I'm 21 year old, who feels like I'm 300 pounds and over 60 years old when I'm walking across campus . . . it's an exhausting life.

Hi there. I have recently been having trouble myself, thus I had to buy a blood pressure monitor as well. I was told to buy Omron, because it's the best. I bought the Omron, Model HEM-711AC, which provides an arm cuff and measures blood pressure/pulse/irregular heartbeat. I've been completely satisfied with the ease of use, and I have had no trouble- plus it comes with a five-year warranty which is quite nice. I hope this helps. Sincerely, Adrienne