42 Years of Migraines
The first clear memory I have of a Migraine was when I was 6 years old. I was in first grade and we were lining up to go somewhere (probably lunch or recess). I raised my hand to ask the teacher if I could be excused to see the nurse because my head hurt. She told me “no” and sent me back to my place in line. Another girl next to me asked what was wrong, so I told her. The teacher smacked me on the head for talking in line. Although I have no earlier memories, it is striking that I knew enough to ask for the nurse. That tells me I definitely had a pattern of head pain prior to this memory. I have earlier vague memories of my mother crushing up baby aspirin because I couldn’t swallow a pill. I must have been very young.
By the time I was 10 years old the headaches became so frequent that my parents took me to an optometrist. I was an avid reader who always “had my nose in a book”. Many photos show me with a book in my hand…or rather, my face. My parents thought I had vision problems because I held the books too close to my face. The optometrist didn’t find much to treat, but did prescribe “reading glasses” with a mild correction for astigmatism. The glasses irritated my temple and gave me more headaches, too. The head pain didn’t stop. I just learned how to swallow pills and hide them in my purse so I didn’t have to ask anyone for permission to treat the pain. No one knew that I was still suffering so often. The adults in my life thought that the glasses solved my problem. When they did learn of a headache (usually after I turned white as a sheet and vomited all over the living room) they scolded me for not wearing my glasses or reading too much.
Within a few years I started having attacks that were so severe I had to be excused from school. I would go to bed with a cool, wet cloth on my head and the lights off. Most of the time, the attack would be over by the time I woke up. Often my skin would become pale and clammy. I would become nauseous and vomit many times in a single attack.
Middle and High School were very good times for me. I had a lot of friends and was involved in many extra-curricular activities. I got very good grades, too. Because I had so much fun, I didn’t want to miss out on anything. I would frequently ignore my pain in order to participate in a fun activity. I would take an analgesic to dull the pain and keep on going. Only when I became too sick to disguise it, would I finally relent and ask for help. Many times I would have to crash at a friend’s house instead of returning home because it was unsafe for me to drive with so much pain. By now my parents could not ignore the fact that I was having a problem. Still they did nothing to help. I have been told that I hide my pain very well. Perhaps they still did not know how much I was suffering. At least they started referring to these attacks accurately as Migraines. They told me stories of family members who also suffered from these “sick headaches”, including my own father.
What? How could they keep that from me? How could they not tell me that my own father had Migraines? I learned from my grandmother that she had Migraine attacks every time she entered a movie theatre. She told me that every one of her 14 children had Migraines and that many of my cousins did, too. All of my aunts and uncles had Migraines and I didn’t know until I was 15. Wow, what a family secret!
At 16 I had to see the doctor for several weeks in a row because of mononucleosis. In passing my mom and I mentioned that I had Migraines. The doctor confirmed the diagnosis (the very first recorded diagnosis) and wrote me a prescription for my first abortive. It did NOTHING to help. When I complained, he lectured me about the need to relax, not be so stressed, to take it easy…all the patronizing things that every Migraineur has heard. I never bothered to ask for his help again. I kept ignoring the pain as long as I could, popping analgesics like candy and crashing on occasion. I didn’t know any other way.
Then I met my husband. Early in our courtship I got a Migraine so bad during a date that he had to carry me out of the theatre because my vision and balance were too disrupted for me to even walk. He was shocked and appalled by the number of Migraines I had each month. He was the first person to suggest that I didn’t have to live with suffering like I was. He naively, but compassionately, announced that I needed to see a chiropractor. I trusted him, so I went for years. Each chiropractor would enthusiastically offer to help. Then after months of failed treatment each one would finally admit he could do nothing more.
Throughout our 24 years together we have been on a quest to discover any treatment that might help. We would hold out hope with each new doctor or treatment. We would alternatively spend months in surrender, void of any hope that life would ever change. He has been there through every rush to the pharmacy for the medicine that had run out, every 3:00 a.m. plea for ice packs and head massages, those midnight runs to the ER when I couldn’t take one more minute of pain. He has endured his own private hell while watching helplessly from the sidelines, crying out to God to make them stop.
We got pregnant in 1992 and experienced a second miracle…the migraines stopped. I had a blissful 9 Migraine-free months as we enjoyed the growth of our child. I hoped that this was the end of that awful life, but it was not to be. Not long after our daughter weaned, the Migraines came back. I was also dreadfully depressed. The doctor prescribed a tricyclic antidepressant for both conditions. My husband and I panicked. My first preventive trial had been with a tricyclic antidepressant and it ended badly with intense suicidal thoughts. We begged the doctor to try anything else except this medicine. He refused and insisted I give it a try. After 2 weeks I began to have suicidal thoughts and immediately threw away the remaining pills. I called the doctor to insist he call in a script for the newer SSRIs. I began taking an SSRI, which helped with the post-partum depression, but did nothing to touch the Migraines
I began hearing about a new medication that stopped a Migraine before it started. I also learned there were headache specialty clinics. It wasn’t long before I had my first appointment and another confirmed Migraine diagnosis. I learned about triggers and how to keep a diary. I went on my first elimination diet to discover my triggers. I also learned about Medication Overuse Headaches (then called “rebound headaches”) and got a strict warning from my doctor to stop using analgesics. I firmly told him I would quit as soon as I got a script for the newer triptan abortive. At the time it was only available as an injection. I was seriously afraid of needles, but did not care. The pain was worse than my fear. He was so cautious that he asked me to come into the office the next time I had a Migraine so he could put me on an EKG machine to make sure I wouldn’t have a heart attack. I was a 100 lb. 24 year-old with perfect blood pressure and no family history of heart disease, but he was nervous. Obviously, I did fine, so he wrote the script. It was amazing! I was able to return to work after that first injection. I finished the day and enjoyed the evening with my family. I was so excited! Finally I had some hope.
My hope was quickly diminished at my follow-up appointment. My efforts at keeping a Migraine Diary revealed that I was getting Menstrual Migraines. The doctor quickly dismissed the other dozen migraines I was getting at other times of the month and offered to put me on birth control pills to manage the 2 or 3 I got during my cycle. I was very frustrated that he did not remember our earlier conversation that I could not tolerate the side effects of birth control pills. I kept my mouth shut, took the refill script and never went back.
Within 6 months I got another long break courtesy of a surprise pregnancy. Once again, after weaning my son, the Migraines returned with a vengeance. This time I found the family physician I have stayed with for the last 15 years. He is incredible! He doesn’t have the same level of expertise as a headache specialist, but what he lacks in knowledge he makes up for in compassion and tenacity. He has rarely refused to try anything I suggest. He knows that I do extensive research on a wide variety of possible treatments (prescription, OTC, alternative, etc.) and is very accepting of my thoughts, opinions, and feelings. When I complained that my current abortive was no longer as effective he gave me several samples to try. It didn’t take long for me to discover one that worked. I have stayed with it when my insurance dropped it from Tier 1 to Tier 3 (meaning I had to pay larger co-pays). I didn’t stray when it was dropped from the formulary entirely, paying the whopping $25 a pill retail price. When I lost my insurance for awhile, I discovered a patient assistance program to help me afford the medicine. It has been my constant companion for the last 15 years. It has been with me through every drug trial.
When my youngest was 2 years old we moved into an old farmhouse on the edge of town. It was roomy with lots of land for the kids to play, but it needed a lot of work. We had big dreams and a small bank account so we planned to do most of the work ourselves. Within the first year, I began to get very sick. I would get Migraines that no longer responded to my abortive. There were a few months when I was in the ER every week. I became a “frequent flier” with a permanent chart in the ER. Sometimes the on call doctor was compassionate and understanding. At other times, I was seen as a drug seeker just stirring up trouble. My doctor tried every preventive trial we could think of to stop this terrible “storm” of Migraines. Nothing seemed to work. The ER staff finally found a protocol that would stop the “storm” for a week or two, but it just kept coming back. It was during this troubling time that I was also diagnosed with Cluster Headaches. I was given a calcium channel blocker to prevent them, which was very effective at stopping the Cluster Headaches that were triggering the “storm” but didn’t touch the original Migraines.
We finally moved out of that horrible house a few years later and I resumed my “normal” pattern. We think that the air pollution from all that remodeling probably triggered the “storm.” From 2005 to 2007 I coped with my “normal” pattern (10-20 Migraines each month) using over-the-counter analgesics. In 2007 I ran out of patience and begged my doctor for another drug trial. I didn’t have to beg very hard as he was eager to help. I restarted a triptan for immediate relief, tried and failed a second round of calcium channel blockers, tried and failed two trials of birth control pills then tried and failed a 2-year trial of both an SSRI and a neuronal stabilizing agent. I was very discouraged because my doctor had such high hopes for the trials.
That brings us up to early 2010 when I went back to using only an abortive. The Cluster Headaches returned, so I added oxygen again and sought alternative medical treatments to bring some relief. I did have several rounds of acupuncture which brought partial relief. My Naturopath recommended an herbal supplement. This seemed to be helping for several months. I wasn’t getting Menstrual Migraines and the Cluster Headaches disappeared completely. Then October rolled around and the temperature dropped. I suddenly started having day after day of Migraines. I started missing full weeks of work because they hit relentlessly. My husband suggested that cold weather might be a trigger as I am always worse between October and April. My entire treatment team is now in agreement.
Now I am beginning to experience more serious side effects from using a triptan at least a dozen times each month. I know I cannot take it at this rate forever. Something else must be done before I cannot tolerate the one medicine that brings me relief. Even with the abortive, I lose out on more than 15 days each month. I have lost thousands of dollars in income in the past year alone because of missing work. I need a new strategy.
Then the “17 days of Migraine Christmas” started. By Day 15 I had about all I could stand. I would get an aura or feel a twinge of pain, take an abortive, get relief, then start all over again 8 hours later. I was angry, fed up, grouchy, and in a lot of pain. There were presents to wrap, food to prepare, cookies to bake. I DID NOT HAVE TIME FOR ANOTHER BLEEPING MIGRAINE!!! I called my doctor and begged for a script so I would not have to go to the ER. I got an appointment instead where my doctor’s new partner gave me a shot to break the cycle and sent me home with her best wishes. It wasn’t quite the same relief I remember getting at the ER…I still had to take an abortive to stop the pain completely. But it got me thinking some more.
I had read that some Migraineuers have to take more than one type of medicine to get the Migraines under control. I had not tried that much. Hmmm…maybe I could give it one more try? I scheduled an appointment after the holidays to talk with the nice young doctor that helped me through my holiday hell. At the appointment I learned that she had previously worked with a doctor who ran a migraine clinic, so she had access to some of the newer treatment protocols. She thought I might be a good candidate for some newer treatments. I agreed to try a new combination of preventives while waiting for the results of my screening for other treatments.
I don’t know what to expect from this medication trial, or other treatments. I just know I can never give up. I have tried to surrender before and all I get is more Migraines. I have to keep on fighting until I finally beat this thing. Migraines have taken too much of my life already. I will not go down without a fight. I’m not sure what life will look like when I have control. I honestly can’t imagine a life with less than one Migraine a month. I sure would like to try it though.