Yesterday, our 15-year-old daughter had the urine tests for pheochromocytoma. She has many of the symptoms. Over the past two years, she has seen many doctors with no answers or with the assumption that she has anxiety. Her worst bout was just a month ago. While my daughter was home with a headache, she complained of chest pain. Then, she said she had no feeling in her hands. Soon, her pulse skyrocketed, and she began to lose consciousness. We called 911. Her pulse and blood pressure were high. The ER doctors couldn't figure it out; they thought it was a panic attack. Her high blood pressure and pulse rate continued. Then, she had two more episodes in the hospital. After the episodes, she had no recollection of the experiences, and her general cognitive functions were that of a 4 year old. (Now, her memory is perfect except she does not recall a thing from the three-day ordeal in the hospital.) She also has had headaches for two years. We saw a great neurologist yesterday who is running a brain MRI and EEG. He also says that she has the symptoms of pheochromocytoma.

I am a female who was diagnosed with a pheo in September. My blood pressure was 240/180. After the blood and 24 hour urine tests, we started searching for the tumor site. We are still looking! It seems I have a very, very rare 'functioning/non-functioning' pheo that only produces lots of hormones part of the time. All the fluctuations in blood pressure and heart rate have damaged my heart. I had to have a pacemaker put in. The last blood tests showed hormone levels 5-10 times higher than normal. The trick was finding a doctor who would listen to me telling him that my body was 'sick' only part of the time when we tested when I was 'sick' the hormones are very high. When I am not 'sick', the hormone levels are near normal, but still higher than they should be. We are now waiting for my body to be 'sick' again so we can run a MIBG test and, hopefully, locate the tumor and remove it. I have been sick for over 7 years, unable to work and on disability. I live in Houston and even the Medical Center can't figure this out! Again, the trick was getting a doctor who would listen to me and test at the right time!

I am a 28 year old RN who has had high blood pressure since 18 years old. I was overweight for my petite 4'11 frame. So all doctors gave me the loose weight spill and sent me own my way. After several years and getting married, one day I went to ER where I worked with a severe headache. My blood pressure was 220/120. Found a new primary care doctor who essentially came to same conclusion (I was fat) and did some basic labs and sent me on my way, just added Vasotec to the Adipex now. So for years I have been off and on medications and got pregnant and had a normal delivery. No blood pressure issues, of course because I was on birth control. So know I have lost about 80 pounds and my blood pressure is still 180/110. Found another primary care doctor who immediately thought this was not right. Did a blood catecholamine and my level was over 700. Normal is 100. So I now I have to see an endocrinologist for a definitive diagnosis of a Pheo. So now it is sit and wait.

I am a 27 year old female who has suffered from panic attacks since 7th grade. I have been to several doctors for a numbers of things, but at 16 I had an ultrasound done on my kidneys because of unbearable pain I was having. The doctors saw nothing and did nothing. Nobody took me seriously everyone thought I was making these things up. I started having awful mood swings, thought to be psycho, crazy and depressed and now I can't take 4 steps without pouring sweat and my blood pressure is severely high. Only last night on TLC I watched a show with a young mother inflicted with this illness. I saw myself in her and I'm glad. I think I've found an answer after almost 14 years.

In April I was sent to emergency with a BP reading of 240/130. Thank god I have a wonderful primary who sent me through a barrage of tests; blood levels, hormone levels, echocardiogram, ultrasounds, 24hr urinalysis and a CT scan. The CT scan found the tumor and the urinalysis and more blood tests confirmed it was a pheo. This past Tuesday I had the left adrenal gland and tumor removed. The pathology report will be back by the time I see the surgeon for my post-op check. I am keeping a positive attitude there. The overload of hormones, steroids and other things that were being released from the tumor will take time to dissipate. My surgeon has reassured me that within a short period of time I should be able to come off all medications. In response to the poster, you need to get on some specific meds to bring down your BP. You need to be on an Alpha blocker called Dibenzyline. It's very strong and is very specific in blocking the catecholamines that the tumors are producing. It was very effective for me and you must be on it for at least 7-10 days before your surgery. Once the alpha blocker is introduced you can the start taking a beta blocker such as Lisinopril to help with the elevated heart rate. Hope this is a help to you and any other patient still waiting for surgery.