Major frustration. The cardiologist and rheumatologist talked and looked at my charts from the tilt table test-- and pronounced it a "Negative negative."
What the heck. It was just one test. Why do you have to say it twice? What, rubbing it in? Huh? GAH!
They say because my heart rate went from 104 to 140 beats per minute (bpm), it's not high enough to qualify as orthostatis or autonomic dysfunction. In other words, in their view, I don't have POTS or orthostatic intolerance or dysautonomia or anything. In other words, as they've been telling me for months, I'm "just fine."
aaaaggghhhhh.
Now, granted, Dr. Bodkin admitted she's not an expert on this, and I did have a zillion other symptoms during the test (and around the clock), so she supports us going up to Milwaukee next week to see this POTS expert and see what he says.
It's just killing me. I've been a lot more diligent about taking my pulse when I have palpitations, and I'm lying in bed for a couple hours, listening to relaxing music--you know, resting, as in my resting heart rate: last night, 108 bpm. This afternoon 111 bpm. The normal, healthy rate is 60 bpm.
Hello?? There's something wrong with me! Let's figure it out, you morons!
Sorry for all the venting. I'm just losing my mind.
Tonight all the advanced choirs at U of I are uniting to sing the Brahms Requiem. Wish I was there. Wish I had the energy to sing. Break a leg, everyone!
Other symptoms today: really shaky, knees, jaw, hands; joint pain, headaches, earaches, palpitations, zinging chest pain, trouble balancing.
Improvements: fewer stomachaches since I've been off the Prednisone, Ibuprofen, and Advil PM. Going to the eye doctor, they put drops in my eyes and I've been able to produce tears today! I've had really dry eyes for a couple weeks.
someday, somehow,
I will be better.
emma
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Oh Man! I cannot believe it, it's frustrating to me and I'm not even you. I am so sorry. So many tests, and all negative, and you are obviously not well. And this test, how can it be negative when it made you so sick and yeah, how can such a high heart beat be negative? It must be a positive sign for something, if not orthostatic. Hard to believe no cardiologist has never seen this or wrote it up in a medical journal to advise other cardiologists about what sort of syndromes or illnesses could cause such a high resting heart rate. Some doctors must be able to figure this out, based on the YouTube videos of POTS and other rare diseases etc. If its not something they have a test for, such as strep or diabetes, its so hard and completely frustrating. I am glad you are still going to see the doctor in Wisconsin, I really think and sincerely hope that will be informative and helpful. You are in my prayers! Thank you so much for keeping this blog!
ReplyDeleteYeah, I hate it when people say "you're just fine" even though you're not.
ReplyDeleteI see this as good news. Prayers answered, healing in progress, fewer medications (advancing to no medications), beginning of a full recovery!
ReplyDeletePerhaps, the best diagnois is the one you give yourself; healing and on the road of recovery and a normal productive life. PMA is the greatest prescription!
Emma, this is the way I see the world. At 73, it's up to me. Doctors can help, but most answers come from within.
Love,
Granddad
Doesn't a "negative negative" mean that it is a positive that they can not prove yet?
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