They did suggest those items. However, they really didn't make much difference. . I thought I was stable when I was discharged from the hospital. However, my BP has gone down and I had to have my midodrine dose doubled. Can this illness become stable without continued problems?I was told it might take awhile to get the dose correct. What is the long term prognosis for people with dysautonomia?
If your heart rate increased 30 bpm or more or exceeded 120 bpm on head-up tilt, that is usually the standard for a diagnosis of POTS from a TTT. (For example, if your heart rate was 70 BPM when supine, and went up to 110 when tilted upright, that would be an increase of 40 BPM and would thus meet the criterion for POTS.)
However, I believe you can have a general diagnosis of dysautonomia without a sub-category definition. This may be more appropriate in your case because it is secondary?? I really am not sure.
At any rate, midodrine and a beta blocker are pretty much standard fare as far as meds go for treatment of syncope and tachycardia. Have they suggested increasing your salt/water intake and wearing compression stockings as well?
thank you, Heiferly.
My first cardiologist thought it was NCS, because when I saw him, my blood pressure followed the typical path for NCS along with very fast heart rate.. I was sent to an Cardiac electrophysiologist to have a tilt table and to be put on medications in the hospital. I had an inpatient hospital stay for a week . On the tilt table my bp and heart rate went up and continued to climb for a little bit,, which they thought was odd because I was already on a beta blocker. . I was given midodrine and a beta blocker. When I went back to my first cardiologist, he called it just a cardio dysautonomia and thought that the thymus tumor that ended up attaching itself to my heart some years ago might be the cause of this. I suppose it is hard to say for sure. Can a diag. of secondary dysautonomia be given with out a sub catagory definition?
I believe you need to have a tilt table test (TTT) to definitively diagnose whether it is POTS, NCS, etc . . . and may need other tests in addition to that. Obviously, in your case the autonomic dysfunction is secondary to your other disorders. The NDRF.org website has information on secondary dysautonomia, I believe, which may be helpful to you. They also have descriptions and definitions of each of the types of dysautonomia.
Sometimes it takes time for the doctors to sort out exactly which form of dysautonomia you have, even when they are good doctors. My diagnosis was only set in stone after an inpatient hospital stay where everything could be observed directly over multiple days round-the-clock.
Have they started you on any treatment for this?