Has anyone been diagnosed with pseudopheochromocytoma

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

There are similarities, but different in that panic attacks have some trigger, and these come out of nowhere. Also BP doesn't rise as high with panic. It's explained in more detail in the literature. There's a Dr. Samuel Mann who specializes in both and the differences are explained.

That sounds very distressing. How are you treating it?
I will add that I used to have panic attacks and they can come out of nowhere, for apparently no reason. Varying things can trigger them. My trigger was caffeine, but not always.

I hope you can get responses from others with your condition. And, find some relief.

I am on a beta blocker, alpha blocker and antidepressant. It's suggested that even if you don't feel depressed, they can help prevent the "spells". I'm also working on mind/body techniques. It is common for it to happen after long term stress and or childhood trauma. I have been under tremendous stress over 3 plus years. This has to be much more common than recognized if only 1/300 people tested for the actual pheochromocytoa have it. There are other symptoms as well, but it's the ones I've mentioned that got my attention.

Lisa I am being diagnosed. I hope you are feeling well

Hi there,
I’m a 47 year old dad and pharmacist, and I believe I’m suffering from pseudopheochromocytoma. I brought it up to my PCP but he dismissed it saying he’d never heard of that and it likely was not a real thing. Nothing against the guy, he’s helped me in other areas but just pretty dismissive on this problem which is plaguing my life. I did have a traumatic childhood due to an illness that kept me out of school for a long time at which point i had panic attacks. However, I was able to identify and overcome panic and anxiety disorder and lead a normal life until recently. These episodes differ than my history of panic disorder both in onset, symptoms, and presentation. Granted, i do get anxiety or panic in response to an episode. I get one episode roughly every 3-4 months, completely out of the blue, i can tell right away by sensation that it’s happening, my blood pressure instantly jumps by about 30-40 points, with waves of adrenaline or peaks which feel life threatening in the moment. I take clonidine as my rescue drug, but I’m also on an antidepressant and beta blocker. Clonidine seems to help the most but it doesn’t prevent and takes a bit to work… maybe shortens the episode. I used to go to the ER every time and it’s still hard not to when it occurs. Just looking for support and any guidance, tips, meds, advice, coping skills. I get severe depression and anxiety in the weeks following an episode

Hi. A lot of doctors don't know about this. Research Dr. Samuel Mann and pseudopheochromocytoma. His specialty is resistant hypertension. He is a pioneer in identifying it. My provider didn't believe it either but much to her credit she took the time to look into it. On one of my follow up appointments I had several articles by Dr. Mann and she also had a couple to give me by him. She knows my history and what I've been through and his papers made her a believer. I started out on Toprol, 100 mg, doxazosin 3 mg, which is now changed to atenolol 12.5 mg and terazosin 1 mg. I also take Zoloft 50 mg. So my dosage is way down and blood pressures controlled. I had insomnia for several months on Toprol due to the it being fat soluble and crossing the blood brain barrier. Atenolol was a game changer but it does give me non allergic rhinitis which is annoying but tolerable. From what I understand the alpha blocker add on is important but I'm not sure why. Dr. Mann addresses it. Maybe this is the missing piece for you? I also have clonidine and Xanax as rescue but seldom use them anymore. When this came to a head for me over the summer, I was in the ER 3 times. I know what you're going through. When you go into fight or flight mode for no apparent reason its awful. I fully believe this is a mind body syndrome. Mann has a book, "Hidden within us" that you might find helpful. In it he references Dr. John Sarno who also identifies this as mind body. I'd suggest you look into Sarno's books as well. I think his first was "healing back pain", "the divided mind" is another. I know the feeling of isolation. I think a lot more people have this but it's put under the umbrella of labile hypertension. The difference between this and a panic attack is there's nothing that provokes it, it comes out of the blue. I hope this helps some. Also for you mkent who posted on 12/30.

This is tremendously helpful. I’m going to reread it and look into the suggestions you gave. Thank you so so much. Are you episode free on your current regimen?

Yes, gratefully, I haven't had an episode since August. Keep plugging at this and hopefully, you'll find what works for you even if it takes a while. I'm happy to answer anything I can because I know how frightening this is. Take care.

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.