June 19, 2002
By Alice Teisan
It was a warm April afternoon in 1996 and I was working as a nurse at the local hospital. While standing still, talking with one of my patients, I began feeling faint and quickly excused myself. Another nurse on the hospital unit instructed me to sit down as she performed a glucose test, blood pressure and electrocardiogram (EKG). However, I knew from my body’s horrendous response that I was experiencing a relapse with Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS).
Based on the recommendation from a journal article that correlated CFIDS with fainting, I quickly scheduled a tilt table test, with the approval of my internist, Dr.Vesna Skul, MD. The test, performed by a cardiologist, involves being strapped to an X-ray table. The straps keep the patient from shifting weight, thus altering the test results. Then an EKG is hooked up to monitor the patient's heart rate throughout the test. Next an IV is started as a precaution in case emergency medications are needed. The test begins while the patient is in a supine position (lying on the back), so the doctor can establish a baseline heart rate and blood pressure. Afterwards, the doctor moves the X-ray table to a standing position. Throughout the test the blood pressure along with the heart rate are monitored at regular intervals. Also, physical changes and my subjective symptoms are documented.
Within two minutes of the test, when I was placed in a standing position, my heart rate went from 94 to 168. Other symptoms included a beet-red face and neck, the feeling of my heart pounding, a throbbing head, uncontrollable sweating, nausea, exacerbated fatigue, severe trembling, and feet that were turning purple. I felt even worse with the passing of the next 21 minutes while left in the standing position. Within five minutes of being returned to the lying position my heart rate dropped under 100. The symptoms caused by the test remained for days.
My body’s unique response to the test mystified the cardiologist as my heart rate rose while my blood pressure remained normal - when it should have dropped. He recommended treating the high heart rate with Inderal, a beta-blocker medication that slows the heart rate. Within a month, I knew this straightforward treatment for common heart problems was the wrong treatment for my disorder. I could not get out of bed without feeling faint.
A nursing colleague discussed my medical history with an endocrinologist. She explained that I had struggled with CFIDS since 1992, had seen over 25 specialists and tried several treatments in an attempt to find answers to my problem. Also she gave him the recent Tilt table test results. The endocrinologist was doing a research study on a condition called Neurally Mediated Orthostatic Tachycardia (NMOT). This is a rare autonomic nervous system problem where orthostatic refers to a change in position (in my case, standing) and tachycardia is a heart rate over 100.
Therefore, when receiving the endocrinologist’s initial call in July I listened eagerly. He began by saying, “Your feet turn purple, your heart pounds, and you always fidget when standing.” During this first contact, by phone, I was to learn how well he knew my symptoms that were revealed by the Tilt table test in May. After seeing me, gratis, he began a one-year medication therapy, including up to 11 pills a day for nine months. The treatment helped regulate my heart rate; however, Dr. Skul was concerned about the difficulty my body experienced from the side affects of the medications.
During this 18-month relapse I went through a period of deep depression. I had lost the ability to work, live alone, or stand without feeling faint, which profoundly affected all areas of my life. The depression therapy was part of the above treatment.
Once my heart rate was under control and my health was improving I began doing menial tasks. As my stamina increased, I was able to work in a part-time clerical position for a dental office. However, I continued to get many of the same limiting CFIDS and NMOT symptoms within three hours of starting work. Along with the NMOT symptoms earlier mentioned, my CFIDS symptoms included low-grade temperatures, arthritic type pain, severe headaches, blurred vision, inability to concentrate, slowed reaction time, and increased environmental sensitivities to noises, air quality, temperature, and odors...
Tune in later for Part 2
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