Has anyone been diagnosed with pseudopheochromocytoma

Thank you all!!! I have a virtual meeting w/my endocrinologist in one week. My cardiologist has not pursued anything beyond conventional BP treatment and this is not doing the job, not even close. But my endocrinologist has already mentioned thinking about clonidine for me and I just got xanax from my PCP. I asked for it after reading these posts which are so helpful and appreciated. I am this morning on xanax for the first time and it helps...really helps. I now feel like there is hope for a solution, ie, something I can live with. I will post on my meeting and next steps. Thank you all again.

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.

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.

@lisa11 hello! I just read your post and want to ask how are do you doing? I have totally same symptomatic but with normal metanefrinas and doctors do not know what to do and how help me.
Thank for you time and hope to hear from you,
Daria

@suziq64
I also found this site looking for help or support. I first experienced these type of symptoms in October 2012. I had testing with negative results, did a lot of research but eventually resigned myself to it. I was diagnosed with something called hyper beta-adrenergic sensitivity syndrome by an endocrinologist. I was never diagnosed with pseudopheo but felt that was what I had. I live in an area without specialists that would be able to diagnose something like that. Eventually over a couple of years with beta blocker and a benzo things got better and stopped for quite a while. Then came covid in October 2021 and I had same symptoms, only worse, along with others and was diagnosed with long covid. I have dealt with it on and off since then and recently had a bad episode. It has dawned on me now with a severe episode that the problems I have had the last 4 years is a reactivation & has attacked my nervous system. Does anyone know where to find a doctor knowledgable about this type of treatment and condition? What medicines are others taking? It's really stressful to try to think about your health constantly.

@yadarya Sorry I didn't respond sooner. I continue to do well on the combo of beta blocker, alpha blocker and antidepressant. I believe this is a mind/body disorder (psychological components) related to childhood traumas, personality types, coping styles, and potentially current life stressors. I work on this aspect too.

@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.