Trinity

yes, this can happen. If you haven't had a tryptase test that's one you may want to ask after. I've repeated several times and still can't catch a positive result yet my doctor still suspects mast cell disorder.

And yes to answer your question, I guess you could say "anxiety while supine" does make it worse, absolutely. Rushing to get ready to head out the door, making mental checklists "Don't forget your meds or your gluten free food or you can't eat for the next six hours" -- Celiacs live in a constant state of anxiety to that end ... So using this morning as an example, yes.

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.

Up your fiber intake and drink lots of water. If the psyllium husk drinks make you nauseous, there are great chewable "candies" that make the process easy. FWIW, I suffer from dysmotility also. I also have celiac disease (no gluten = no wheat, barley or rye). When I went for a routine colonoscopy for the celiac disease, I still had food in my colon after a two and a half day fast. My neuro put me on Cromolyn Sodium oral suspecting a Mast Cell disorder and things are moving along a lot faster now. You might want to explore this issue with your doctors especially if you're an allergic type person.

- On Metoprolol, Cromolyn Sodium oral for possible Mast Cell, on Mestinon for possible Vagus nerve neuropathy. Taking Gabapentin for fibromyalgia and anxiety. Topamax for migraine. Neuro wants interval training but exertion exacerbates symptoms and leads to bad days with episodes. - Still having random Sinus tach episodes with peak bpm 165 and blood pressure soaring to 200+over 100+, tach sustains at 145 for approx 30 mins and tach resting HR 90 supine - Resting heart rate usually 55-60 with blood pressure 120/70. Resting bp has crept up steadily. Used to be 105/60. -Developing some incontinence -Urine tests show no elevated hormones post episode for pheochromocytoma. Catecholamines and cortisol have tested normal in the past year. Anyone else experiencing similar breakthrough tachycardia, and how did you address? Was it hormone/endocrine? Should I pursue imagine of my adrenal glands? Is it worth the radiation of a CT? Other ideas / tests worth pursuing?