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Go Figure


stellakitty
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My daughter's cardiologist want her to redo the tilt table due to all of this "siezure" type of activity she was having. Last Tuesday, she stopped all meds (Florinef & Toprol) and she did the test yesterday. At a 70 degree tilt her bp actually went up, at one point to 160/103, her pulse was erractic, varing from 98to 180. Her hand and feet turned purple and swelled, she had alot of tremor activity. She did not pass out.

Now she is upset because she thinks her new cardiologist is gonna say she's making up the dizzy all the time stuff, and since she "passed" this TTT no one is ever going to figure her out. I think she wasn't off of the meds long enough. Anyone?

Thanks

Angie

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Was she able to tolerate the tilt for the entire test? How did she feel (i.e was she very symptomatic during all of these HR and BP fluctuations)? It certainly doesn't sound liek things were "normal". I think the doc's definition of "passed" must be a little different...

I am sorry that you didn't get more answers for your daughter this time. Please tell her not to give up- be very persistent!! We know that she is absolutely NOT making this up!! What is her cardio recommending at this point?

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It really doesn't sound to me like your daughter "passed" the tilt. A blood pressure of 160/103 and a pulse of 180 are NOT normal. Not everyone with dysautonomia faints during the tilt. Did the doctor really tell you she passed?

Michelle

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It looks like stellakitty's daughter THINKS that the cardiologist will think she passed the TTT. She hasn't seen the cadioogist yet.

I don't think she passed the test.

I never passed out during the TTT. I just had symptoms that "normal" people do not get, starting almost immediately.

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I never passed out during my test and it was still read as abnormal because of my huge leap in heart rate from 80 to 150 something. I happen to be one of those folks who also has a drop in BP, but some POTS folks don't have that, or at least it's not that dramatic.

I would wait to hear what the doc says and then take it from there. Also, just an FYI, one should be off Florinef for at least 10 days prior to the test (I think I was asked to be off of it for 14 days prior to my NIH testing, and 10 days prior to my ttt at Columbia).

Nina

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I didn't pass out until the end of the test when they added the meds. Prior to that my bp increased to 160/98 and that was on meds for high BP. My HR soared to 154. My bp dropped when my HR went above 160, that's when I passed out. I remember telling them I was going to faint, them saying they were going to stop everything, beginning to lay me down, and that's it. Came to shaking uncontrollably and with a violent headache.

Doctors are not the "supreme being". If you don't like what you're being told, find another. I just got names for more internal med docs from my GYN yeasterday because the current internal med guy doesn't listen to me, and doesn't understand POTS.

Good luck!

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Thanks for the replies...

We, (my daughter & I) just get so frustrated with dyautonomia because dr.s don't understand and we are just trying to cope with this illiness. It was the tech performing the test who told her she wasn't positive for POTS.

She felt terrible the entire time she was upright on the table. She was having terrible tremors and thought her heart was going to pound out of her chest. We are going back to the cardiologist on Friday. She saw her pcp yesterday, she didn't know what to make of the TTT, but she did give her some neurotin (sp) to try for her leg tremor. Good news, she hasn't had a "seizure" in a week, yeah. I'm taking her to a neurologist next week just to be on the "safe" side.

She has an appt with Dr. Grubb in Ohio in June.

Angie

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regardless of what your local docs say, I would keep the appt with Grubb. You'll at least leave the appointment with an accurate dx, or suggestions about what to do to get an accurate dx.

Nina

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I am so glad you decided to go see Dr. Grubb!! I haven't seen him myself, but have heard wonderful things and I am hoping you will leave with some answers. I agree with Nina that you should keep your appointment regardless of what any other docs tell you from here on out, especially being that it takes so long to get back in =) It's great that your daughter hasn't had any seizure type activity lately, I hope that continues to go well for her and that she starts feeling better soon. I can only imagine how frustrating this has been for you as a mother, and for her as well. Good luck :(

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