My Monster with Tentacles

My dad was in the Air Force and I grew up in different states. The first time I was hospitalized for dehydration was in Texas and I was nine years old. They found no cause for my constant abdominal problems. The next time was in Alaska at the age of eleven. The doctor told my parents that I probably was just a nervous child and that they “shouldn’t give in to me.” The doctor said to tell me to go outside in the fresh air and that I shouldn’t be allowed to go to bed or the symptoms might get worse. Sitting outside on the steps was not always an easy thing to do in Alaska.

My dad was transferred to Florida when I was twelve, but this “monster” traveled with us. The barometric pressure was low when we entered the state because of a hurricane and my headache and all its symptoms had been disgustingly evident to all as we traveled.

We hoped that maybe this climate would make a difference for me. It didn’t. It did mean a new doctor that began numerous upper and lower gastrointestinal tests as well as blood work. He prescribed Valium. My parents said, “No,” and he told them not to bring me back.

My dad retired and we moved to Oklahoma when I was fourteen. This meant a new doctor and more tests. He said that if they could control the abdominal symptoms then that should stop the headaches. He put me on a strict diet and my first three medicines.

I was experiencing headaches that were so severe my hair felt like it was being pulled from my head. I received good grades in school and worked at having experiences like my friends. There was one time I was cheering for our football team and suddenly was in the grasp of this “monster”. I rushed to the side of the bleachers to vomit violently. A new teacher accused me of having been drinking alcohol. Fortunately, two other teachers came to my rescue and explained that this was an on going health challenge for me. The new teacher said that if that was true then I had no business being a cheerleader and walked off.

The symptoms would hide and then with little or no warning the monster would wrap itself around me. I was able to get through two years of a three year registered nursing program but my body couldn’t take it and I finally had to drop out.

I married and we had two children. With each pregnancy came disabling headaches and an obvious facial rash. I returned to college when our youngest began kindergarten and then I began teaching science in a men’s minimum-security prison.

My husband and I were involved in our children’s activities. There were the usual experiences of teaching them to ride a bike and then to drive a car, scouting, sports, dance recitals, graduations and so much more. But, shuffled into it was the pain and poor health. Life was good, but always lurking ready to pounce on me at any time were the tentacles of this monster. It was like a kids game at an amusement park where someone stands ready with a large hammer to clobber one of the heads that jumps up from the various openings of a big game box.

During the 45 years of our marriage: I’ve been in the hospital, ER or had an outpatient procedure about 65 times, had surgery eight times and was transported by ambulance about eight times. My husband has taken our wedding vows seriously and has made my illness our battle.

An absolute downward spiral began in April 1991. My primary care doctor never stopped searching for answers from numerous “ologists”. There were constant tests. The tentacles grabbed me and squeezed harder.

I was in and out of the hospital with Lupus, C.H.F., low potassium, vomiting, diarrhea, gastroparesis, dehydration, seizures, high blood pressure, stroke like symptoms, pneumonia, extreme headaches that caused my face to burn, chronic intestinal inflammation, and others. I was on a first name bases with almost the entire staff at our community hospital including the nurses, lab, x-ray, maintenance, housekeeping, cafeteria workers and of course the EMTs.

I was forced to stop working in the community and the church, and work got harder. Isolation was becoming my constant companion. Teaching in a prison setting can be full of challenges and stressful events, but it can also be very rewarding. I loved my work and respected my coworkers as well as my students. However, I had to miss work more frequently for doctor’s appointments, hospital stays or bed rest.

The headaches were more severe and were accompanied by stroke like or heart attack symptoms. Working in a men’s prison setting was not a good place to have these symptoms, especially when I would become confused and not sure which building was mine. It was time for me to stop working.

December 8, 2006 it was necessary to have a port surgically inserted into my chest because starting an I.V. had become challenging.

Twice I was transferred to a different hospital looking for answers. Each time that meant more specialists and more tests that were often negative. April 25, 2008 my primary physician and my husband decided it was time to look somewhere else for a solution. They agreed that somewhere there had to be a doctor that could find an answer to what was causing this monster with the tentacles that constantly attacked me. I was transferred by ambulance to a city four hours away.

We arrived at this university medical center’s ER before midnight, admitted and the tests began. Once again nearly all the tests returned as negative. The next day around noon the physician entered my room, the students discreetly followed and stood in white coats listening as my husband and I were again told they had found nothing that could be causing my symptoms. I was told I was being released from the hospital. Tears welled up in my eyes as I turned my face away from them and slowly shook my head. I finally found my voice and interrupted the doctor as he was speaking to my husband. I quietly asked, “How long can this continue? I’ve fought this battle at least since I was nine years old. Tests almost always come back normal. What am I going to do?” My voice was weak, the doctor turned toward me and stepped closer to listen. “My head hurts constantly. My face burns. I see bubbles that aren’t there, but are racing toward me. Sometimes I faint for no reason or look like I’m having a stroke, but I’m not. I have chest pains and I’m short of breath, but they tell me I’m okay.” If I was being turned away with no answers again then I was at least going to express how utterly helpless and hopeless I felt. I looked up and saw that the doctor had pulled a chair close to my bed to better hear me as I chocked on tears. “I vomit or have terrible abdominal pain. I’ve been in other hospitals numerous times and to all kinds of specialists. No one and nothing can help me.” I tried to sit up and prepare to leave as I gave the doctor one last pleading look.

The doctor began to ask questions and my husband and I searched for answers. Then my eyes opened wide in shock and disbelief as we were told that maybe there was an answer. I was told to go home and rest and that I was to return for an office appointment. What an appointment that was!

My husband and I were in that office with the doctor for three hours and fifty minutes just talking, listening, and working through a maze of history. This neurologist had a laptop and frequently entered information as we talked. At the age of 60 I was finally being offered answers! By the grace of God we had been led to the head of the neurology department of this university hospital and someone that specialized in migraine! MIGRAINE! Who knew there was more to migraine than a headache? My monster that I had always believed had tentacles – indeed had several life-sucking tentacles and they had names!

We learned that I had symptoms of Abdominal Migraine, Migraine with Aura, Migraine Variant, Syncope Migraine, Precordial Migraine, Vascular Migraine, and Confusional Migraine!

I was taking 26 different medicines a day at that time. The neurologist took away all but six that first appointment. Migraine preventer medication was begun. Migraine abort medication would be Tylenol for the pain and Phenergan to cause me to sleep the migraine off. Explanations of what was and would be happening to me were given as well as what I could do to make a difference in my own life. After asking us if we had any more questions or if there was anything else he could do, the doctor did something we had never experienced before. We were given SIX, single-spaced, typed pages concerning everything about that appointment! The same information was sent to my primary care physician. We left that day having learned that I am a migraineur. Praise God, I am a migraineur! The monster has a name.

The next couple of months it was necessary for me to have home health in order to stay out of the hospital. Since then we have had to change the preventer medicine at times to find the right combination for me, but my doctor, the nurse, my husband, my primary care physician and I are working as a team!

Nothing at this time can totally prevent my having migraines, but we recognize them and have ways of fighting them. At this time I only average about three hospital or emergency visits a year instead of being in the hospital more than out. My neurologist has filled out and given me information for the times that I am in a crisis and can get no relief. It states that I am not drug seeking but that I am a migraineur. It contains various prescriptions that he recommends for treating me and stopping a migraine event, not just masking it for a few hours with a pain reliever. My primary care physician now has these IV medications ready in the office, and I don’t have to go to the hospital for treatment to abort a migraine.

My husband just read my story and is holding the papers in his hand as he is telling me how “terrifying and tough” this battle has been for him. I’m trying hard to listen to him and not cry. It’s like watching a movie that you wish you could stop or just leave. My heart breaks for him.

It has only been five years since my diagnosis. Knowing the enemy, having a team that works with me, and medication to prevent and abort a migraine event is making a difference. I have more good days than bad now and knowledge is making me stronger. My family understands that a migraineur is like having a job away from home and sometimes you have to miss events or can’t be present when you would like, and now we try to appreciate and enjoy the time I am “at home”.