Has anyone been diagnosed with pseudopheochromocytoma

I am sorry you've had to deal with this the better part of your life. Pheochromocytoma is very rare from what I understand. I read that for every 300 people who have symptoms and get tested, only one will actually have the tumor. Pseudo causes many of the same symptoms because the sympathetic nervous system goes haywire. My symptoms were extremely high blood pressure and heart rate, horrible anxiety, nausea, flushing, dizziness. I would bet you could find a group if you initiated asking on some different forums. Take care.

It sounds like a panic attack to me, especially if the testing was negative.

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?

@help4nurse I'm sorry you're having to deal with this and know how stressful this would be. I was going to be referred to an endocrinologist in Madison. He said, the only positive way to diagnose it is to test blood during an attack. Which means being off all medicines and being in a hospital. In other words, that's not going to happen. So pseudopheo is a diagnosis of exclusion. Many doctors aren't familiar with it. I keep referencing Dr. Samuel Mann as his articles explain it and hopefully your doctor would recognize his work as legitimate. He recommends some combination of alpha, beta blockers, antidepressant, and acknowledging psychological components. Many people think there is no psychological component. It's complicated and beyond what I understand. For some it's just their coping style that sends nervous system into overdrive. I've had many unexplained physical problems related to stress since mid 30's. This one came on when I was 67. Take care.

@angellreo Hi. I take Atenolol, terazosin and Sertraline. I live in an area where there are no endocrinologists and would have to travel at least 5 hours, so my PCP consulted with an endo who said this protocol is what is generally recommended and it has been working for me. I know the anxiety is something so frightening when you've never experienced it. The trick is finding the right dosage for you. I recommend looking up Dr. Samuel Mann who specializes in pseudopheo and has several articles about it.

I have. I'm going to be getting the tumor removed once I get the medications to make your blood pressure stable before surgery. However I don't have high blood pressure, but the doctors say that doesnt mean it won't spike within any given moment since its producing hormones.

@lisa11 PSEUDOpheochromocytoma is even MORE rare than a "pheo" and the symptoms are the same. Please don't ever minimize someones experience because it is different than yours. I also have a "pseudo-pheo" and it's debilitating at times.

@lisa11 Hello again. I'm sorry an endo is so far from you. I live within 2 hours of a major city but have found endos are in limited suppy right now. It's crazy. My pcp had never heard of it but recommended talk therapy for help with emotion regulation during a flare. I met with a psychiatic nurse yesterday and she recommended Ketamine nasal spray. Have you heard of that treatment. At this point, I'll eat dog food if it will work!

@angellreo

I wasn't minimizing anything. My only goal on this site is to try to help as I was seeking for help. You misinterpreted.

@angellreo

I haven't heard of Ketamine for this condition and don't know much about it. I would try it if I needed to. The episodes are awful.