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Help, I'm Stuck


India
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B) Hi all,

I've been absent for a while from this group because I have felt so dispirited. Not by anything anyone has said here. But by the total lack of care I am getting from the medical community out here in Hawaii. In January things were getting very bad for me. My cardiologist was no help at all--knows nothing about POTS, and the only guy who did know something (the guy who diagnosed me) moved off island. However, my ever supportive husband--who was terribly worried about me as I was practically bed bound which is very unusual for me--after huge efforts managed to find a supposed (and published) expert on POTS. My regular health insurance would not cover a consultation with him, so I had to pay for this all out of my own pocket, but I was happy to, initially at least, in order to get to see someone with some experience, even expertise with this problem.

So, I went to see him--he was running 1 1/2 hours behind schedule--with high expectations. These expectations were totally dashed. First, I saw him only briefly--of that, more in a moment--and spent much of the time with an intern. Now, I am the first one to admit that we all have to learn, so I was willing to go along, albeit begrudgingly, as long as I got to talk to him too. The intern took a long and detailed medical history, she had my whole, extensive medical file that I had sent in weeks before, and she was sympathetic and I have not complaints about her. What I do have serious concerns with, however, is the so-called expert's diagnosis based on the tests performed. Very briefly, they had me lie down and took my BP and pulse, had me sit up and took my BP and pulse, and then had me stand up and took my BP and pulse. On the basis of this elaborate series of tests, the expert concluded that I did not have POTS as there was no serious changes in BP or pulse, and he couldn't do anything for me, goodbye.

I was absolutely fuming (they should have taken my BP after he announced his diagnosis!). Surely those tests are completely inappropriate and inconclusive, especially in someone who is on medication to boost her blood pressure as I am (florinef). When I did the Tilt Table test a 18 months ago, my BP dropped to 50/36 and I almost passed out. That was not immediately on standing but after a period of time. The doc still said I had orthostatic intolerance. Now this guy is saying that BP drops are immediate in someone who has POTS when they stand up. Is this true?

I have no other resources here. I can't simply jump in a car and drive to get a second opinion (unless someone can loan me one of those cool James Bond underwater cars). I decided to say sod the whole medical establishment (pardon my French) and determined to just will myself to feel better and throw myself back on my own reserves because, outside of my long-suffering husband, there was no one else who I could depend on. And I felt actually better for most of the Spring semester. But, inevitably, I fell into a POTS (or whatever it is I have) hole a few weeks ago, and am having difficulty crawling out again. I feel so totally isolated and completely helpless.

I guess what I want is a definitive diagnosis. Even if I can't be treated, at least I'll know what it is or isn't I've got and I am sure that will help me psychologically and thus physically.

Any advice?

India

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India, it sounds like he performed a "poor man's tilt test" by having you lie down and get up again. However, his results are not accurate, because, as you said, you're on florinef.

Also, your BP and HR changes need not be immediate. Mine doesn't happen for about five minutes, but when it does, it's pretty dramatic--for POTS, the "official" dx is that it happens within 10 minutes of rising. Sounds like he didn't have you stand for 10 min each time.

I wish I had a suggestion of a better doc to send you to--unfortunately, I don't. Rather than find a renowned specialist, you might want to focus on finding a doctor who is willing to learn and figure out your issues with you. My former general practioner was awesome at that--sadly he moved away to a rural area of Virginia to get back to practicing a real family practice again. It may take many visits to find the right doc--it took me, literally, years.

Nina

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Guest tearose

I am glad you came back here!

It is terrible that you have no physician who can help you deal with POTS. Can you look into finding a top notch internist who will care and get involved and maybe even phone, call or email a POTS specialist?

If you are frustrated with the "poor man's tilt table test" they tried to do...and I sure think since you were on meds it is inaccurate...then write a note to be placed in your files so the next professionals who look will see your comments and know you are having trouble but are improved a bit on florinef.

I think it is typical for us to get down once in a while and to need to recharge and return to activity when we feel better again. Just take all your tasks and break them down into small manageable tasks.

Please don't give up trying to improve...all things . Improve your medical support and improve your belief in yourself! You are surrounded by like minded and like bodied, caring people!

take care, tearose

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