mama_destiny

I'm asking because today I feel not so badly, and my hr is on the lower end than it has been while I was feeling pretty crummy. 59bpm laying, and 90bpm upon standing, so all in the normal range. A couple days ago I had my TTT, and my HR was 124BPM the entire 20mins while tilted up. Is this normal for POTS?

I am just wondering how it "works" for most, when you aren't as symptomatic as your worst days. Does your HR slow down when feeling sort of decently, or does it always remain high, no matter what you feel like?

So the nurse who was actually in the room doing the test with the Dr. Assistant, called me as well! She was very nice, and talked to me for a good 15mins. She said that although I didn't meet the 30 BPM increase, I did (obviously) meet the 120 BPM in the first 10 mins., and it was that way the entire test. She said if it were up to her, she would definitely give me the diagnosis for POTS, and has no doubt that's what going on with me, since I also have the symptoms. She said that the Dr. just might go ahead a diagnose POTS from what was shown during the TTT, and she thinks I should go ahead and keep that appt. to see what he says. Of course she would say that, but she did seem personal at the same time. I think I will keep that appt, just to see what happens, and I will also make an appt. with another Dr. in Denver, if I get "lucky" with the local, I can always cancel the other, since it will be scheduled pretty far out anyhow.

I called them and left a message letting them know what the HUTT site says, they called back told me that it was done under THEIR standards, and they can assure it was done correctly. She said everyone does TTT's slightly differently, some do 15mins. laying flat, however they do not. She said there is no certain way it has to be done. She told me to ask the Dr. more about it at my next appt. It is time for me to move on from them, already. I just need to figure out how it is done at the Dr. I am thinking of going to, first. Unfortunately, traveling to another state isn't an option for me, with having 4 kiddos to care for.

II thought for SURE I wold get diagnosed today, especially when I seen my BPM range. At one point the Dr.'s assistant came and checked my pupils, is that a routine thing done during a TTT? My husband was sympathetic about it all (for once when it comes to "POTS") when I came home and bursted into tears about it. He said the same thing, I should go back and demand that they redo the test. BUT I don't know that a big-headed Cardio is going to want to listen to little ol' me, ya know? I heard about a good cardio to go to an hr and a half away from a member here. I think I may go ahead and just cancel my appt. with this Dr. and go to the one in another City, where they know what they are doing. I don't want to waste any more times with this one, if I apparently know more about POTS than they do! Man I am super bummed about this, but I guess I have to keep pushing for answers, like the rest of you have! I'm glad to have found this place.

Today I had my TTT with a local Cardo. They got me all hooked up and had me lay down, took my initial readings within 20secs of laying down and raised me up( I mentioned after the test, that I thought they were supposed to get my "resting" HR laying down, she said that wasn't how the POTS TTT was done, I guess I was confused about how it was done?) My starting HR was 108, which is much higher than it normally is when I am "resting", at home I get 64-75 BPM laying for about 3 mins. My heart rate was about 124 BPM the entire time I was tilted up. I don't know what my BP was, as they never said, they just said everything looked normal for my age(27), and that my blood pressure was keeping up with my HR as needed. I couldn't help but tear up once I was told it was "normal". I wanted to know what was causing my symptoms. I am just back to the starting point basically now, ugh. I go back for a follow up in 2wks, but I'm not even sure it's worth it. He's going to tell me what the nurse and Dr.'s assistant already told me - everything looked normal. They did tell me that he may want to do it again, or try something else? I feel pretty hopeless about all that though. I was also told by the RN that a couple of my symptoms were not POTS symptoms(brain fog, and dizziness/feeling like I just got off a merry go round basically, or like I had drank too much alcohol), but possibly inner ear/neurological. I have already had a Brain MRI, all was normal.

Ever since I was about 13 or so, I have gotten these weird painful sensations in my legs(among other symptoms), starting near the calf area, down to my feet, it almost feels like there would be a blood clot or something, or a circulation problem. I know it can't be a blood clot or I would be dead these 14yrs later, lol ! Is what I have been feeling all this time, the feeling of the blood pooling possibly? How would you explain the feeling?

I'm just wondering if these symptoms might have any relation to POTS? Sometimes my ears will get bright red and really hot. The insides of my hands sometimes also become red, hot and itchy as well. Has anyone else experienced this?

I'm not quite sure where to start, because like many of you, my symptoms have been off and on for many years, as early as I can remember. I have yet to be diagnosed with POTS, but after having my latest flare up(extremely dizzy, along with brain fog(even remember simple words is sometimes a huge task), feeling as though I don't "remember" how to breath, limb pain and numbness, headaches, heart pounding out of my chest, trouble comprehending, light headedness and extreme fatigue...to name a few), I searched google for the millionth time and happened to come upon a website where a woman mentioned her daughter had many of these symptoms and has POTS. I looked up "POTS" and as lame as it sounds, I teared up as I read about POTS, because it describes ME. Maybe I'm NOT crazy(or just "lazy) after all, and I don't have depression like I was diagnosed in '09(no one would believe me). I was put on 10mg Lexapro in '09 for "depression", which did help me feel more normal than I had been feeling. I got pregnant and weaned off Lexapro and during the pregnancy I was completely symptom free. Just after having my son in Jan. of this year, it all came back. My husband had thought I was making all of these random symptoms up to get out of doing things around the house and such, because it seems odd how symptoms can change daily, and it almost always seems to be something going on, while some days inbetween, I feel great. Also because I didn't have a complaint during the 9 months I was pregnant. I'm guessing that would be due to the blood volume increase that pregnant women have? Recently, I went to my dr. with all of my symptoms and they sent me right in for a brain MRI, thinking I may have had a stroke, but everything turned up fine, and they left it as that. The only thing that came back from my blood work, was elevated liver enzymes. Would POTS have anything to do with that? I go back in a month for more blood work to see where the levels are at. Anyways, I found a local Cardiologist who is familar with POTS and have an appt. on the 9th of May. I am hoping to get to the bottom of what ever it is that is going on with me, I believe it may be POTS. Not sure what I will do if they don't find anything! Ahhh! Very frustrating. I checked my pulse just to see where it was, and it seems to be in the normal range. 68bpm laying down(checked after 5 mins), 96bpm (immediately upon standing), and 94bpm (after standing for 5mins). Does this mean it can't be POTS?