Debra's Story

My name is Debra, and I was diagnosed with Medullary Adrenal Hyperpasia following a left adrenalectomy for suspected pheochromocytoma in 4/97. This surgery followed nearly 6 years of misdiagnosis. I say misdiagnosis because my doctor did not know what was wrong with me.

It started for me in February of 1991. I had had spinal surgery in 12/90. Upon the go ahead from my orthopedic for my husband and I to resume our intimacy, I had my first severe episode. This happened during an orgasm. I know this may be embarrassing for some to read, but it is important. You see I know now that there is a major release of catecholamines into the blood during orgasm or physical excitement. When this occurred I was stricken with a very severe headache (left sided), overwhelming nausea, shaking, frequency of urination, anxiety, sweating, flushing/palor. It was horrible. I had thought I had had a blood clot or something from the spine surgery that caused this. I called my doctor the next day. He had no clue what happened. He referred me to my GYN about the problem. My GYN said it was probably what is called post-coital migraine syndrome, and that it probably would not ever happen again. I took his word for it, and left it at that.

The next time I had an episode was when our neighbor's house burned down. I was so upset and scared that it happened again. The pain in my head brought me to my knees. Again the same symptoms occurred with it. Then in 1992 I was told I had a breast tumor and needed to see surgeon. Again, another episode. These episodes seemed to be occurring during times of high stress.

When I told my GP about this, she said they were more likely than not a type of anxiety attack and I was told to try relaxation techniques. I bought tapes and even thought I should see a therapist. Maybe I had issues I was not aware of that I needed to deal with. I spent a lot of money only to find out how well adjusted I was.

Then in 1994 I began having episodes more freqently. But they always occurred in the middle of the night, waking me out of a sound sleep. Pounding headache, racing heart, sweating, nausea, frequent urination, bowel disturbances. I told my GP about this and she put me on Paxil, again to treat me for anxiety. This continued for a year.

Then in October of 1996, I was standing in my shower when all of a sudden I was hit with an episode. My head started pounding, racing heart, nausea, all the symptoms. I immediately got out of the shower and laid down. Every 15 minutes for 7 hours I urinated and vomited. I thought it was migraine and took an injection of Imitrex. Nothing helped. Things finally subsided early in the morning and I slept nearly the entire day. Then the next night I went to bed and at 2:00 a.m. awoke with the same thing. This time my husband called an ambulance. My blood pressure was 260/139, and I was rushed to the hospital.

Again, the hospital thought I was having a migraine. Although they did a CAT scan of my head to make sure I was not having an aneurysm. My family doctor was called, she admitted me. I spent 3 days in the hospital. With my blood pressure dropping during the day and rising like crazy in the middle of the night. No urine tests, no serum tests for epinephrine, nothing. It was decided after three days that I had essential hypertension and was sent home on Paxil for anxiety, and Procardia for blood pressure. Oh yes, and I was told to lose weight.

The episodes continued, even after losing weight and taking the medication, and again seeking psychiatric counseling, again only to be told I was in better mental health than the counselor. Then in December of 1996, my GP was out of town, and I had another bad episode. This time I went to a clinic (with some new doctors) right here in my village. My blood pressure was very high. I just looked at the doctor and said, "Please listen to me, waking up in the middle of the night with severe high blood pressure is not normal. And if you wait a couple of hours my blood pressure will drop." Well, he listened.

He looked at me and said, "I think I know what is happening to you." At that point he called an Endocrinologist in Syracuse, NY at University Hospital. I asked him what he thought it was and that was the first time I heard the word Pheochromocytoma. I saw the endocrinologist right after Christmas in 1996.

I was then put through a battery of tests including a Glucagon stimulation test, CT scan, MRI, 24 hour urine tests, and Octreotide scan. The Glucagon stim test was positive for an over three fold increase in epinephrine, and the MRI showed a lesion (very small) on my left adrenal gland. This was followed by selective venous sampling where blood is actually taken from the adrenal glands before, during and after stimulation. My epinephrine levels were over 99,000 from this venous sampling. Once the results were in I was scheduled for surgery a week later. That was 4/8/97.

For six wonderful months I was completely symptom free. I did not have to take any medication except for a small dose of Atenolol to help control my Mitral Valve Prolapse. Then in September of 1997, in the middle of the night, I was stricken with a severe episode again. I could not believe it, not again. Since 1997 I have had quite a few episodes again.

We are now in the process of finding out if this disease has affected my right adrenal gland also, or if there is a possibility of a pheo somewhere else in my body. On 1/26/99 I will be seen at National Institutes of Health in Bethesda, MD for evaluation and testing. It is my hope that we will be able to get to the bottom of what is going on. Unfortunately my sister, who is 17 months younger than I was having similar problems as I describe. And our mother passed away at the tender age of 52. Mother suffered some of the symptoms that both my sister and I are experiencing, so we thought there was a chance she had the same thing. We recently discovered that my sister has been ruled out for pheo, and has hyperinsulinemia.

At any rate, if I can be of any assistance to anyone out there, please feel free to email me at Angldove77@aol.com. Thank you, and I hope if you are experiencing similar symptoms that you send me email, for you are NOT ALONE.

Thank you, Debra

*** Update May 25, 1999 ***