Before Diagnosis
In my early 40s I began having intermittent high blood pressure, anxiety, insomnia, trouble concentrating and muscle cramps. My doctor asked me to make lifestyle modifications, but the truth is I was already leading a healthy lifestyle. I routinely exercised and ate a balanced diet. However, I did have a stressful job which I thought was the cause of my issue. My blood pressure became elevated more consistently over time so my doctor started me on benazepril. That didn’t seem to work so she added a diuretic. This worked for a while and kept my blood pressure about 130/80. After a couple of years on this medication, my potassium which was always borderline low dropped to below normal. All of my symptoms became worse, especially the muscle cramps, anxiety and insomnia. The doctor changed my diuretic to a “potassium sparing” diuretic and my serum potassium improved. I felt like a new person but did not realize it was because my serum potassium had improved. The cramps went away, I had much more energy, I could sleep. I felt so much better. My blood pressure was still not at goal so the doctor added another blood pressure medication – amlodipine. All was fine for a few years until my potassium dropped again and would not come back up no matter how much potassium I consumed. I felt terrible with all of my symptoms getting worse. The insomnia was particularly bad as were the muscle cramps and low energy. My doctor was not sure what type of specialist to send me to for the low potassium but eventually decided a nephrologist would be best.
Diagnosis
By now, I had been treated for “essential hypertension” for about 10 years. The low serum potassium led me to seek a diagnosis – I still had no idea it was related to my “high blood pressure.” The nephrologist reviewed my case and immediately suspected it was PA. He did a 24 hour urine, aldosterone-renin test and CT scan. All of these tests were conclusive that I had PA. I was told to take spironolactone which immediately lowered my blood pressure to 115/75 – first time in years and with only one medication. I was not told about potential surgery or eplerenone as an option. I continued to do research on PA and learned about the other options that way. I had AVS done but it was done at a place that doesn’t do many so some of the procedural guidelines were not exactly followed. The AVS showed I was unilateral and could benefit from surgery but since the procedure guidelines were not followed exactly I was reluctant to move forward with surgery. I then got an opportunity to participate in an NIH clinical trial. NIH confirmed my diagnosis and told me that I was actually bilateral but only one adrenal was affected at this time. They recommended surgery but told me I could develop PA in my remaining adrenal. This gave me pause. I decided to wait on the surgery. I have been on eplerenone since that time.
Treatment
My treatment on eplerenone is not optimal. I still must take potassium supplements and my blood pressure is labile. My sleep is better but not like it was before PA. I tend to get low sodium in my blood which causes cramps and sleep issues. I now do relaxation practices and mindfulness which help a lot. I avoid stress and generally feel well but wonder how the high aldosterone is affecting my body.
Since Treatment
I have been on eplerenone treatment for about 4 years. My quality of life is far better than it was before I was treated for PA but it is not as good as before I had PA. I still have issues with sleep, muscle cramps and occasional high blood pressure but all of these symptoms are much better. I will be going to Mayo Clinic in the summer to have my case reviewed by them since they seem to be the world experts. If they feel I am a good surgical candidate I will proceed with surgery.
