Cynthia,
I was diagnosed with Carotid Body Paraganglioma 13 months ago.
Two miss-diagnoses before. I had seven enlarged lymph nodes in the neck. Two growths in the right kidney. No biopsies for either Paraganglioma (PG) and Pheochromocytoma (PH). Testing if they are active is not very accurate. Biopsies will most likely make them spike. My PG was active, norepinephrine and dopamine. PH can do adrenalin as well. Trigger testing is not approved here. Most hospitals in US do 24hr urine or blood test at rest.
I did a test in Sweden, an active trigger, my blood pressure went up in 180s.
Highest I have had was 247 over 185. Episode only lasted about 45 minutes.
For example, early diabetes test will make Pheochromocytoma spike to raise your blood pressure. You will see information does not exist in a single place. I had to write a couple of AI models to find anything and everything for PH and PG.
Testing for PG PH genetic mutations is critical. I learned that i have SDHB mutation.
My primary is at MD Anderson cancer center in Houston. I got my second opinion at Mayo, and third at the Cleveland Clinic. Cleveland clinic actually has a Paraganglioma and Pheochromocytoma Institute. They work closely with NIH. Great information source.
Like I said, my diagnosis day was last year in May. Surgery in November to remove the PG that was wrapped around Carotid (between shambling 3 and 4, meaning almost completely wrapped around the artery) and Vagus nerve.
Post surgical complications are First Bite Syndrome, parotid gland failure, some speech problems, and the surgery bed area does feel like you are wearing a nice soft wool scarf over that part.
Anything I can do to share my experiences. Please just ask.
We are all stronger together.
You are blessed!

Sincerely,
Coach V