westernmass Posted December 11, 2012 Report Posted December 11, 2012 ...I swear I'm gonna faint!! (LOL)My new cardiologist was a huge disappointment. How can they say there's no point to trying medication!? I've only really tried a bb, midodrine and one week on florinef... I'd like to maybe try florinef again and/or mestinon. He literally said "POTS is a pain in the a$s"-- which sure, is true, but made me feel more like he was saying it was a hassle to deal with us potsies. Also, any doctor recommending French fries is suspect to me. There are healthy way to get salt.UGH. Back to the drawing board. This was a follow up from my trip to Boston for autonomic testing... Where I was told pots is a "hormonal young woman" thing, "no one over 40 has this" and to, yes, of course... Drink water eat salt and exercise! As if I couldn't have found that for free in the Internet... I wonder how many people I've PAID to have tell me that... Quote
jpjd59 Posted December 11, 2012 Report Posted December 11, 2012 Westernmass:I know the feeling! It's really a disappointment when that is the best advice they have to offer. Quote
misstraci Posted December 11, 2012 Report Posted December 11, 2012 Arrrrg, I can scream and stomp with you and for you!! What a drag. I always get all worked up and excited for new appointments hoping for the best and I always get let down. Sorry yours turned out that way. I also hate paying people to tell me to eat salt and the same spill or even, " I don't know" but that don't care to help figure it out or experiment or anything. Hope next time is a better experience!!! Quote
bebe127 Posted December 11, 2012 Report Posted December 11, 2012 Westernmass,Been there, done that, and ready to get rid of the t-shirt!! I too was told basically the same thing, my EP's direct quote was "Eat more salt, drink more water and go live a normal life." Seriously?!?! Go live a normal life...I wouldn't wish living with POTS on anyone, not even my worst enemy, but there are times when I come sooooo close to wishing it on some of these doctors. Just one day, one day to see how it feels to feel so helpless at times. UGH, I feel for you. Nevermind, he neglected to tell me how much salt and how much water!! He also told me that I couldn't be on meds because my bp elevated during my TTT and since the "only" medicine to treat this syndrome is florinef, he didn't want to risk putting me on it in case it raised my bp too much and caused me to be hypertensive (good thing, in hindsight).I later found a GP close to home that treats others with POTS. He put me on a BB and Xanax. They kinda do what they are intended I suppose, however I still live with the myriad of symptoms daily.And what in the world..."Where I was told pots is a "hormonal young woman" thing, "no one over 40 has this" ??? I am here to tell you, I am a 43 yow that has had this for 3+ years. Do these doctors even read journals??? Do they research anything??? Do they have internet??? I'm with you, Westernmass, you probably could saved a bundle!!Sure hope you find some answers soon. I too am still on the quest to find a non-idiot doctor!!Feel better Even though we may feel helpless at times, we should never be hopeless.Bebe Quote
Jacquie802 Posted December 11, 2012 Report Posted December 11, 2012 Which hospital did you get testing at?? Please message me the dr you saw in Boston. I have seen a few doctors in Boston and am wondering if you saw the same person! Quote
diamondcut Posted December 11, 2012 Report Posted December 11, 2012 I am sorry too that you had such a rubbish appointment. You sit there, and listen to it and then come out of the consultation furious! I think the best you can do is carry out your research on the Dr as much as possible, and try to come away and think if this happens next time this is what i shall say. Have a list or print outs infront of you so you dont get flustered by the Dr's stupidity!!I had a total wasted trip to a geneticist the other week, she was not interested in taking blood or saliva for anything. Basically said in her follow up letter, it wasnt her area to all the questions i asked.Just try move on and on to the next who will be able to help. Quote
Christy_D Posted December 11, 2012 Report Posted December 11, 2012 So, if it is a young woman thing...What is it that my 17 year old son has? He also has also been told to drink more water, eat more salt and exercise. Kinda of hard when you are as nauseated as he is. Sorry your doctor appointment was a disappointment. Quote
Jacquie802 Posted December 11, 2012 Report Posted December 11, 2012 Just wanted to chime in that you should keep looking for a dr who is interested in helping you, don't give up. I have a cardiologist near my homeowner who isn't very familiar with POTS but does a lot of research to try and find treatments to help me. He isn't my primary dr for POTS but he stays in contact with all my treating physicians, including my primary care dr. Quote
westernmass Posted December 11, 2012 Author Report Posted December 11, 2012 THANK YOU all. This is why this forum is so wonderful.Thank you thank you thank you. I guess in those situations I just sort of mentally check out- I've heard it before and am already figuring i won't be seeing this person again. I am lucky to have a great primary doc who is willing to experiment, test for things as they come up, etc. He doesn't have a lot of experience with pots, but he has three of us in the past year. Thanks to all for the support Quote
ramakentesh Posted December 19, 2012 Report Posted December 19, 2012 Problem is there appears to be biochemical reasons for poor salt handling in POTS that loading would not necessarily alter long term. Quote
jkoconne Posted December 19, 2012 Report Posted December 19, 2012 Ugh how frustrating for you! The first 2 cardiologists I saw told me that it was typical for a young girl in her 20's to feel this way...and one didnt even bother listening to my heart! Im sorry you had this experience Quote
Angela Posted December 19, 2012 Report Posted December 19, 2012 Problem is there appears to be biochemical reasons for poor salt handling in POTS that loading would not necessarily alter long term.cool, would you explain what you are thinking when you say biochemical reasons for poor salt handling? Quote
ramakentesh Posted December 19, 2012 Report Posted December 19, 2012 Sure - some POTs have high Ang II and paradoxically low aldosterone; some POTS may also have other mechanisms that are impairing salt handling. Quote
Angela Posted December 19, 2012 Report Posted December 19, 2012 oh yeah, ok thanks for clarifying. Quote
ramakentesh Posted December 19, 2012 Report Posted December 19, 2012 Although loading cant hurt. Just that there is hormonal or regulatory issues that may be causing the low blood volume in POTS that loading will not completely overcome, thus many require therapies like florinef, saline or licorice to assist. Quote
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