Has anyone been diagnosed with pseudopheochromocytoma

I found this post searching for support groups for pseudopheochromocytoma. I first had an episode in 2022, about 35 days from the onset of Covid. My nephrologist told me they were seeing a trend of people presenting to the ER 30 days plus or minus 5 days, with sudden severe hypertensive crisis. He brought up pseudo at the time, after pheo was ruled out. I did well for two years on my medications, with few episodes. Then Covid hit again this past October, and the episodes got more frequent and more severe. I’m now on multiple mediations to control it, but continue to have episodes at least weekly. It is everything you all have said. Terrifying. Debilitating. I am looking for more information and support. I wonder sometimes how I can go on like this, and for how long I can go on like this. It has changed my life.

Hi Suzi. I'm sorry you're going through this. What meds are you on? Are they treating this like it is pseudo, does you're primary care doctor consider it pseudo, or was it only something mentioned by the nephrologist? Are you on an antidepressant?

Hi Lisa! My nephrologist is the only one that mentioned pseudo, and the it appears that is what he is treating me for at this point. I’m on Diovan, Coreg, Lasix and Lexapro. I have Clonidine for episodes.

I notice you're not on an alpha blocker. While we know what works for one may not work for another person it's my understanding from all the reading I've done, the most common recommendation is for a beta blocker, alpha blocker and antidepressant with others as deemed necessary by doctors. I was on Toprol and doxazosin and amlodipine which was changed to atenolol and terazosin. Amlodipine was stopped. I was definitely over drugged in the beginning with side effects. I would encourage you to look into articles by Dr. Samuel Mann. Maybe an alpha blocker would help?

My heart goes out to those of you who have pseudo / pheochromocytoma (either). I barely know what either condition is; what the causes are or what the treatment entails. Worse yet, it sounds like some primary care doctors don’t either! This surely sounds like a case for a specialist, probably an endocrinologist since the adrenal gland is part of the endocrine system. (Not sure how a nephrologist got involved in one member’s care but at least the suggestion brought the idea into the awareness of the member.) Prayers and hope for those of you struggling with this.