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Has anyone been diagnosed with pseudopheochromocytoma
Hi. I had man symptoms of pheochromocytoma (tumor on adrenal gland) including very high blood pressure, high heart rate, sweating, flushing, terrible anxiety (unprovoked) and others. Your body essentially goes in to fight or flight mode for no reason. I was given clonidine for these rare occasions. Otherwise BP was normal. The episodes became more severe and frequent and I had the testing done for this which came back negative. Apparently out of 300 people tested only 1 will actually have tumor. So the rest of us are referred to as Pseudo pheo. Just trying to reach out to others for support. Thanks for any feedback.
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@help4nurse Sorry I missed this, now over a month ago. I usually get notified of posts but didn't on this one. I will be 69 in March. I hope by now you've found Mann's articles. He does reference pseudo pheo. Good question about a genetic component. He claims there is a psychological component (childhood trauma, significant current stress, they way a person handles stress, etc). I know in my case it's true. It's likely they don't completely know all about it, maybe there is a genetic component. It is so frustrating dealing with doctors. The feeling is HORRIBLE and so frightening.
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3 Reactions@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.
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3 Reactions@lisa11 , my mom has every symptom of this condition. She’s gone to the ER multiple times over the years with this being the only cause. Once treated, she recovers…until the next time.
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3 ReactionsI am curious if anyone with these symptoms has had a sleep test and/or diagnosed with sleep apnea. I've had most of these symptoms and finally had a sleep study and found I have moderate to severe sleep apnea. Symptoms are improving.
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3 Reactions@celia16 May I ask what sends her to the ER? For me, it was high bp but I almost landed there feeling suicidal. That is something Ive never experienced and it was awful. I just wanted the intense anxiety and the feeling like I drank 40 cups if coffee to stop. It doesn't help that my husband has a quick temper with frequent outbursts. That sends my adrenaline into overdrive. So glad I found this group. It helps to see I am not alone.
@helene0886 I havent but did read there is a link
@helene0886
Very interesting. I don't have it.
@celia16
I had 3 visits to ER, then would recover. My PCP gave me clonidine and xanax. It got to the point where the clonidine wouldn't hold more than 1/2 a day, and it would shoot up again. I pleaded with her to help because the ER didn't so she gave me fairly high doses of metproprolol and doxazosin and proceeded to work me up for a pheochromocytoma. I was upset when found out I didn't have the tumor because the symptoms matched up perfectly. Started doing search and found out about pseudopheo. I feel anyone with this should at least have clonidine for emergencies.
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4 Reactions@angellreo
I wonder how many actually have it. They say for every 300 people with these symptoms and are worked up for pheochromocytoma, only 1 actually has the adrenal tumor. So the rest have this. My understanding is it is a problem with the sympathetic nervous system going haywire from past or present stress and or a coping style. Everyone has stress. I guess some of us just react differently.
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3 Reactions@angellreo , my mom felt like she was dying. It seemed that anxiety had sent her BP through the roof. She often felt she was having a stroke, though no actual symptoms of a stroke. Once she got examined at ER, it was inevitably high BP that was determined. They started meds to bring it down. Often anti anxiety meds were enough.