I suffer from Chronic Migraine Syndrome. If you are someone who occasionally has headaches, please do not tell me you feel my pain – I appreciate the sympathy, but you do not.
Often, while lying in the fog induced by the complete crippling of my brain, I have tried to find the words to describe this hell to someone else. Because I feel this irrational need to explain to you why although nothing appears wrong with me, I am utterly incapable both physically and mentally of doing anything other than remaining stationary in a horizontal, typically fetal, position. And sometimes I come up with words that seem almost close enough.
It can be a raging storm. It builds in intensity and rails against every part of me. It causes the light to burn and sound to thunder. I become nauseated with the constant pressure. It can also be a wild animal. Stalking from place to place, this pain is piercing and localized. While I may be able to sit up and talk to you, if it moves to a new spot and begins to attack it can cause tremors and twitching. This is what I have pictured while being ravaged, the storm and the predator, destroying me from the inside. When I tried to explain them to my husband, he smoothed the hair from my forehead and told me to go back to sleep. But I think anyone who experiences either type of the localized, piercing pain, or the more ubiquitous pressure, will recognize the analogy. Perhaps they too have been haunted by these scenes as they try to grasp on to anything that isn’t pain. But then, I have always been given to the more literary flair.
Let me be clear, these instances of lucidity do not always occur. I have begun to think of them as a tiny version of myself, hiding somewhere deep in the recesses of my brain while the pain rages all around. Sometimes she is never found, and chatters inanely about increasingly ridiculous topics (I once decided that a particular migraine was a pack of rabid howler monkeys and narrated their rampage) while the pain gets worse and worse but since she won’t shut the fuck up, I can’t fall asleep and get any relief. Sometimes she is drowned in the pain, losing consciousness but still alive and allowing me to slip blissfully into the black. That is the best you can hope for. And sometimes, she is hunted, systematically, and tortured until she breaks. Then there is nothing but the pain. I can’t describe it any other way – I retain no trace of myself and know nothing but the excruciating crush and pull. I understand how dramatic this sounds, but migraine suffers will know. This is the worst.
Under the influence of pain, I have said some things I imagine I wouldn’t ever say otherwise. It can be a strong motivator to receive relief of any kind. A sad fact that my family is more than familiar with.
My grandmother, I am told, was a beautiful woman. Her name was Rosalee. I am also told that she was prone to depression, bouts of extreme emotions, and would often confine herself to her room for hours or even days at a time. She saw doctor after doctor at her husband’s request, most of them psychiatrists. I am told that most of them pronounced her mentally ill in some way. She took her own life on September 14, 1971, leaving behind two daughters that were 9 and 7.
My grandmother also suffered from what we now know to be migraines. My mother remembers her lying in bed for days at a time in extreme pain, needing it to be dark and quiet. We believe that this is why she sought help from doctors and was instead rebuffed with dismissals of feminine hysteria, mental instability. In the end, it became too much. The pain and the disbelief.
We are so convinced that my grandmother suffered from migraines not only from hazy memories of a young girl, but because chronic migraine syndrome is genetic. My mother suffers from it, my children will most likely suffer from it, and it is almost certain that my grandmother knew the pain of migraines. (Incidentally and interestingly, the same gene mutation that causes migraines also causes seizures with a slightly different mutation. Did I mention my brother has Epilepsy?)
My mother also experienced something similar. The first doctor she saw when she began experiencing migraines in her early 20s told her that she was just depressed and therefore her “headaches” were “psychosomatic” in nature and she should just buck up. My mother, being a rare breed, told him he could kiss her ass and was that “psychosomatic” enough for him because if not she could report him for misogynistic douchebaggery. Or something of that nature. And she moved on to another doctor, hoping someone could tell her what was wrong.
It was not until she found a female doctor who also suffered from migraines that someone started taking her seriously and she began to find relief. And she made certain that every doctor she saw afterwards heard the word migraine and if they would not accept it, she left.
I was 7 when I had my first migraine. Doctors told my mother that I was too young to have migraines, there had to be another explanation. I was kept for days in a dark room, in extreme pain, with no solution.
Freshman year of high school, the migraines returned. During a Biology test, my vision went blurry and then completely black. Again, the doctors told my mother that people my age just didn’t have migraines. They told us it was more likely a brain tumor. So during final exams, I went in for testing. All tests came back clear. Putting us back at square one, relieved, but frustrated that no one would give us a solution.
For the rest of high school and into college, I operated under the assumption that yes, these were migraines, and I was just going to have to take care of them myself. Having a mother who suffered from them made my navigation easier. And it worked for awhile. Then things began to change several years post graduation. I started having low grade headaches every day. Ones that maybe an Excedrin or 2 could knock out, but I didn’t medicate since I had them so often. And the full scale migraines, which had been once every 4-5 months began to occur once or twice a week. I couldn’t work. I could barely get out of bed. My husband took me to the urgent care clinic one night because apparently I had begun speaking gibberish to him. They said tension headaches, stress, brain tumor. And sent me to the ER.
Another scan, another all clear. That was the breaking point. I needed to know what was wrong, but most of all I needed a doctor to hear me when I told him I HAVE MIGRAINES. I looked up every migraine specialist within a 2 hour radius of my home. I called and left messages, ignoring recorded voices that asked for referrals and leaving my name, number, and a brief description of what I was going through. I heard back from nearly all of them. Most had 4-6 month waiting periods before you could even schedule an appointment. But I filled out every piece of paperwork each clinic sent me, begged to be put on every cancellation list, and waited to see who would take me first.
I ended up going to a Headache and Wellness Center about an hour from where I lived at the time. I filled out endless questionnaires, did lots of tests before ever seeing a doctor, and did a lot of talking when he sat down in the room with me, but damn it, someone was going to understand what was going on here. And he said: “Well it sounds to me like you have Chronic Migraine Syndrome.” Then he proceeded to explain it. I could have cried. YES. YES! That is me, when can we start fixing it?
I have since moved and now drive about 2 hours to the Headache and Wellness Clinic, but it’s worth it. We are still not to 100% with a solution for my migraines, but it’s getting better. And I never have to worry that someone won’t understand what I am going through.
I write this diatribe on the migraine, and the medical support that is in place to help you through it, to encourage those of you who do suffer from migraines to seek a specialist, don’t let anyone minimize what you are experiencing, and always continue to advocate for yourself.