Chapter 2 - Searching for help
As headache sufferers, we can count ourselves as having one of the most popular health problems in today’s world. If we are not experiencing a headache at the time of our doctor’s appointment, we have no physical signs, just complaints. I would have been happier with the outcome of my first doctor’s visit concerning my headaches if he had known me better and if he had examined me while I was experiencing a headache.
It was shortly after we came back from California that I went to a local doctor and explained that my headaches were becoming a concern. To my dismay, his answer was that I had lived in our rural community all my life, been married to the same man for nine years and life had simply become “hum drum.” I was not impressed with this diagnosis and I began looking for another doctor.
A new clinic was opening in a small town only seventeen kilometers from our home. When the children were born and we needed medical attention we had always gone to Kamloops, a one hundred sixty-kilometer round trip. Having a family practitioner closer was much more convenient. I became the patient of a young doctor in the new clinic. He is still my family doctor today, and now we also have a Community Health Centre close to his clinic. He is a wonderful, caring doctor, agreeable to the alternative therapies I wanted to try. He also sent me to many medical specialists in Western Canada and the Mayo Clinic in Rochester, Minnesota. He never suggested any ridiculous reasons for my headaches and together we attempted every new and old drug treatment available.
In addition to pain killing medications, my doctor prescribed prophylactic ones. These were intended to stabilize the vascular system, with the hope that they would control the changes in the veins and arteries, thereby preventing migraine attacks.
Through the years I was told by the different medical professionals that migraine is a vascular disease in which there is interruption of blood flow in the head. I was told it is more common in women then men, and women could get worse or improve through menopause, that there was no cure for migraines, but they were treatable. One specialist believed that the walls of the vascular system swell, restricting blood flow on the inside of the arteries and veins, at the same time placing pressure on the surrounding tissue, causing inflammation and pain.
The common preventative drugs were blood pressure medications. I tried calcium channel blockers which, at the time, were the newest, most expensive drugs, designed to lower blood pressure and calm the vascular system. I experimented with diuretics that decreased the amount of liquid in the blood to ease pressure. I tried anti-seizure drugs that were designed to treat the nerves of the vascular system and prevent them from responding erratically. There were medications called ergotamines designed to keep the blood vessels constricted, preventing swelling. I also tried estrogen to keep hormone levels consistent. None were effective.
One drug therapy that did bring relief was Prednisone (a steroid anti-inflammatory). High doses of this drug worked and my doctor hoped that if we could slowly reduce the dose to a safe amount, it would prevent the attacks. As soon as we brought the dosage to a tolerable level, my headaches returned. Preventive medication was just not going to work in my case. I feel I gave the drugs adequate time to work and I persevered with all the hated side effects. Most of the drugs made me lethargic. Any drug that made me tired also caused weight gain. Prednisone caused swelling of my face and water retention. It also made me hyperactive, and sleeping was almost impossible. There was also a concern that I could develop kidney problems.
The next expensive and uncomfortable attempt at migraine prevention was oxygen therapy. This is commonly used for cluster migraines, one of the types of headaches a neurologist had diagnosed in me. Almost all of my headaches would awaken me from a sound sleep between 2:00 and 4:00 A.M. The theory behind the use of low-flow oxygen during the night was to give my body extra oxygen to minimize a change in body rhythm, which happens to all of us in the early hours of the morning. My doctor felt this slight rhythm change was a migraine trigger. I also used a higher flow of oxygen during a severe attack at any time. This occasionally helped a bad one, but use of low-flow oxygen at night did very little to minimize the headaches. After some months I gave it up, as it was not worth the cost and discomfort. I had to wear a mask that fit over my nose and mouth through the night. I constantly had to readjust the mask, keeping it positioned on my face so the oxygen could not escape. It was hot and impaired sleep.
When I had a particularly severe headache, my doctor would administer intravenously a drug known as C.P.Z. that can drop blood pressure to dangerous levels. Therefore, I had to be monitored for several hours after the treatment. This left me in the clinic for the better part of a day, and it only broke the headache if I had previously taken powerful narcotics. C.P.Z. is primarily used in the treatment of schizophrenia.
Another drug I received by injection at the clinic was Dihydroergotamine (D.H.E) a powerful ergotamine that causes constriction in the veins and arteries. It always broke the headache, but sometimes not for long if taken by itself.
As my family doctor ran out of ideas, he began sending me to specialists who he hoped could help me. I experienced some unpleasant surprises in the specialized field of neurology. A neurologist is the preferred specialist for migraine treatment.
I met my first neurologist because of my dentist. He suggested that I should see a jaw specialist and have him check my slightly crooked jaw, the result of having broken the hinge on the left side at age fourteen. Perhaps a well fitting splint worn during the night might help. My doctor was also in favor of this professional investigation as jaw problems are often a cause of headaches. When I arrived at the specialized dentist’s office in Vancouver, I had a migraine. The dentist saw very quickly that the symptoms he was expecting to find, indicating a problem with my jaw, was not what he was witnessing. I was complaining of a painful engorgement near the carotid artery in my neck on the opposite side from the break. My right eyelid was swollen, the eyelid droopy, and he could see I was in pain. These were not symptoms he wanted to pursue and he referred me to a neurologist.
The dentist quickly arranged an appointment for me at the University of British Columbia Hospital in Vancouver. The hospital was located close to the dentist’s clinic, and in a short time, I had my first encounter with a neurologist. At first I was very impressed. Upon examining me, he discovered I had no reflexes on the left side of my body, and my left eye would not dilate. The migraine was on the right side. It was evident I was in severe pain, and the artery in my neck was swollen and throbbing. The two neurological abnormalities (improper dilation of the pupil and lack of reflexes) were an indication to him that I might have a brain tumor. Unfortunately, he couldn’t hospitalize me that day for tests as the technicians had just served strike notice. I had to return home and wait until the strike was settled.
The first test was a brain scan to look for a brain tumor. It proved negative.
I was then placed on the neurology ward of the University Hospital for ten days where I underwent several more tests. The neurologist prescribed high doses of Prednisone, which again broke the headache. As my doctor had done earlier, he lowered the amount daily, hoping a moderate daily dosage would prevent the headache. Again, it did not work.
Neurology was a large, depressing ward, but it was revealing to observe the patients who had been diagnosed with brain tumors. Their symptoms rarely included headaches. They were mainly dealing with balance, speech and memory problems. My father-inlaw died of a malignant brain tumor and if he had any headache at all it was one of his last symptoms. His first indication of a problem was falling. We saw him several times and observed the deterioration of his personality, and control over his motor skills. He eventually was not able to speak yet a headache was not a symptom of his terminal illness. I learned that less than one percent of headache sufferers are found to have brain tumors, and the brain feels no pain. A brain tumor causes pain only when it applies pressure on the meninges, the waterproof membrane that surrounds the brain inside the skull. The meninges does feel pain.
The neurologist reviewed my tests and found all were negative. His diagnosis was that I had cluster migraines, and stress headaches, both of which I was simply too concerned about. He suggested I try ignoring the headaches and perhaps they would improve or even go away. This seemed to be a pretty weak solution considering his first reaction to what he had witnessed, but I was glad to know I didn’t have a brain tumor.
My next experience with another neurologist was in the Kamloop Hospital. On several occasions, my family doctor felt it necessary to hospitalize me. This gave me a rest, and he arranged for different specialists associated with the hospital to come and see me during my stays. The doctor I saw this time specialized in neurology and psychiatry. He showed little interest in my headaches, but gave me endless papers full of questions to fill out, some concerning family members and childhood experiences. He was mostly interested in my parents, particularly my father. The questions where supposed to be answered with a simple “yes” or “no”, and most of them referred to my parents as if they were deceased. I refused to answer any questions that weren’t present tense. Both my parents were living and played a significant role in my life as I lived so close to them. The doctor suggested that the possible reason I was so negative about answering these past tense questions was that, as a child, I disliked or didn’t trust my father. I had always turned to both my parents when I was questioning life’s problems. My father was not particularly affectionate, but he proved many times and in many different ways that he loved his family. He was not the reason for my carotid artery swelling, my eye not dilating, losing my reflexes or having all the pain. I know that negative emotion and physical pain are connected, but the idea of negative emotion being the main component behind my headache problem was absurd when my migraines produced such obvious physical symptoms. The doctor didn’t appreciate my reaction to his questions, but I was not willing to turn my condition into some psychological puzzle that he could use to waste both my time and his. I appreciated his concern, but felt my family history was not significant in regard to my headaches. I was not depressed, resentful, unhappy or fearful. I was physically ill.
He prescribed the intravenous form of D.H.E., and I was in the hospital for about a week, during which time there was very little discussion between us. I was sure my family doctor would agree with my feelings about negative issues from my childhood as he also was my parent’s family doctor and knew all of us well. We were a close family, and he never suggested I needed any kind of psychoanalysis. If he had, I would have been in favor of a complete psychiatric evaluation.
This neurologist also suggested that the swelling in my neck could be caused from my neck being too thin. Now, doesn’t that sound like a professional evaluation? I know several small boned people who have thin necks and they do not have migraine.
Shortly after returning home from this hospital visit, my father insisted I go to the world famous Mayo Clinic in Rochester, Minnesota. He not only paid for all my tests but also wanted my husband to accompany me. He insisted in paying for both our plane fares and accommodations.
Again my family doctor made all the necessary arrangements.
We were in Minnesota for the better part of a week. The first doctor I saw was a general practitioner who gave me a very thorough examination. She then recommended all the specialists I should see. I saw a bone specialist who x-rayed and examined my broken jaw hinge. Even though it fell slightly to the left when I opened my mouth widely, he was satisfied. It had healed with no clicking, locking, grinding or pain. The general practitioner also detected a heart murmur, which was diagnosed as a prolapsed mitral valve that was leaking. This wouldn’t require immediate attention. I had a mammogram because I was 38 years old and had fibroid type breasts. She also seemed concerned that I had had a hysterectomy at such an early age, and questioned the reason for that procedure. There was also an internist who did liver tests because of the gall bladder surgery. I had been young and the liver had definitely been stressed. She ordered other tests, looking for any weakness caused by the severe kidney infection I experienced during my first pregnancy. Every chemical imbalance or deficiency that could possibly relate to migraine was tested. The last doctor I was to see was a neurologist. He would have all the test results and perhaps one of them would give him the missing clue that might unravel the mystery behind my migraines.
How could I not come home to my dear and loving parents, family and friends, without an explanation that would set us all free from this worrisome burden? This was the Mayo Clinic and they had the best equipment and doctors in the world! We waited with anticipation to see this last specialist.
We found the neurology department to be the most demanding. Manypeople had crippling neurological diseases, requiring a lot of care. It reminded me of the neurology ward in the Vancouver hospital, and my heart felt heavy for those people. We sat in the waiting room for six long hours, and at last I was called in.
The doctor would not allow my husband to accompany me during the interview. I was in his office for approximately five minutes. He did not examine me, but said the reports had all come back negative. His only concern was the amount and kinds of medications I had been prescribed. In one short sentence, he gave me his diagnoses and remedy. “You are a drug addict.” He suggested I stay in Minnesota for a month in a rehab center and deal with my drug addiction. I left his office in disbelief and horror. Maurice was angry. He wanted to explain what he witnessed when I had a headache and how I fought the pain. I would wake up in the middle of the night in shock, cold and shivering, and lie like a board for hours, breathing shallowly in an effort not to move my head. I was unable to relax. I experienced auras, hearing impairment, my voice would change and my nose became cold and congested. Smells would be exaggerated and I would be sick to my stomach. My face would be deathly gray and distorted, my right eyebrow noticeably lower than the left, and the area around my eye swollen. The severity of pain changed my face on the right side to such a degree that one doctor unfamiliar with my appearance responded as if I was having an aneurysm or stroke. My blood pressure would be high. Tears were an uncontrollable natural release. The pain on top of my head felt like it would diminish if I could have rubbed it with a brick. Maurice wanted to explain all the symptoms previous doctors had witnessed, but there was no opportunity to talk the neurologist again. The diagnosis was final. There was no chance to question the specialist or get a second opinion. We were devastated.
We boarded our plane and flew home. I wondered if the doctor was right. Maurice and I discussed it and he disagreed. As soon as we were home, he discussed the diagnosis with my family doctor, who agreed with us completely. I was not addicted to prescription drugs. I suffered from severe migraine headaches that required strong medications. My doctor had witnessed me in more physical distress than any other migraine patient he had ever treated. When I came into Emergency, the last thing on his mind was addiction. No doctor in the clinic ever refused me medication, or suggested I was there to get drugs. I was glad I lived in a small community where the doctors and nurses knew me. I was given immediate attention and felt warmth and compassion from all of them. I will always be grateful for my doctor’s care. There was nothing else he could do but prescribe drugs. We both knew he was treating my painful symptoms, but that was his training. He was doing his job as graciously and professionally as possible.
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