This was almost one year ago before the "violent tach" episodes started
-10 min supine 0 min supine +10 min standingNorepinephrine 99 141 254 Epinephrine <15 <15 18 Dopamine <30 <30 <30 Vital Signs-10 min Supine 0 min Supine +10 min Standing BP 115/66 122/70 131/80 P 57 55 65
Morning cortisol was way low.. We have done urine collection post episode for pheochromocytoma and numbers are normal/low.
I used to be pale but now on most occasions I am as flushed as Santa Claus.
I feel I urinate constantly, that is -- I feel I generate waves of full bladders and that leads to the bouts of incontinence. I can't keep up.
I do believe that all of this has gotten worse when I started the Mestinon and Cromolyn.
My hands, feet, and face tingle like crazy and are the sounding horns for me to check my heart rate monitors. They tingle both on bradycardia and on tachycardia. I've noticed I will be brady the day before a tachycardia episode. They tingled initially when I started Topamax last year for migraine but I took bicarbonate as needed and have since adjusted. This is a new kind of tingling and is more frequent.
My gut dysmotility has improved tremendously with the drugs, as has sleep and brain fog. But this tach is something else. The goal was to get digestion and nutrition underway so I could exercise now I am terrified to walk around the block. I can't even shower without a sustained rise in heart rate. I used to be a typical POTS person, now it's like the rubber band snaps at the slightest stress.
I typically have been a very low blood pressure person so these high blood pressure incidents are scary and uncharacteristic. So are the headaches that accompany them.
I had another episode this morning. I woke, took Cromolyn, showered to ready for a Dr. appointment, dressed, noticed my heart rate was 80 and climbing. Tried to rest and eat, 90, climbing, 100, climbing, SNAP! off to 150 I go. It resolved fairly quickly but I was shaken the rest of the morning. It's now 3pm and my resting heart rate is still dancing between 65 and 95. Yesterday my resting heart rate danced as low as 40 but sat mostly at 65.
Has anyone else experienced this....all the signs of adrenal problems, yet low to normal blood and urine tests? How aggressively did you pursue imaging? Can someone give me a success story where an endocrinologist persisted with aggressive testing/imaging and found the culprit?
I have a twofold cancer risk already with celiac disease, all my mother's side has already passed from gastric cancers. So I am not eager to start bombarding my abdominal area with unnecessary radiation if MRIs are available. I see radiation as a currency I need to spend wisely with CT scans in my lifetime. I may still need some of my head and neck area with this POTS business.
Your experiences and insights, please.