To Function or Not to Function...that is the Question!

There was no question that I wasn't functioning with migraines before I sought treatment.  A migraine would leave me unable to function for days...between the auras, which prevented me from driving, to the vomiting, photosensitivity, audio sensitivity,aphasia, balance issues, debilitating pain and exhaustion, I was often incapacitated for 72 hours or more...and my recovery was slow.  During the height of the my migraines I have been known to beg my husband, or once a colleague when I was hit with one during a conference, to shoot me in the head, just to make the pain go away.  It still happens, but not as often as it had.

After the initial "breaking of the cycle" my neurologist prescribed Topamax, an anti-convulsant drug which helps control migraines.  There is a reason why migraineurs call the drug "Dopamax."  I was working as a sign language interpreter and found that I could not process language in order to translate.  On a personal level, my family had to deal with me repeating things I had told them moments before, and I was forgetting to do things.  My family and I could have lived with the repetitions and forgetfulness, but I had to be able to work....so we had to find another option.

Apparently the options are limited for asthmatic migraineurs.  Certain medications used to treat migraines can interfere with inhalers.  I was finally prescribed Nortriptyline and Clonazepam.  Interestingly, this combo resulted in a loss of the auras.  In some aspects this is a positive, unfortunately it also means I lose my warning mechanism before the pain hits.  And occasionally I have had an aura without the migraine.  I have weeks that I  am migraine free, weeks where I have what I call "minigraines," or migraines that I can function through, with the aid of my abortive medications, and weeks that I have several disabling migraines.  Some days I function better than others, but over all I am functioning better than I was.

So...why a blog?

Why not?  I like to write and if my experience can benefit anyone else, so much the better.  Migraines are getting more press with famous people like the Vikings Percy Harvin experiencing them, but there are millions of people who suffer daily.  There are a lot of misconceptions about migraines, as well, and people don't always understand how debilitating they can be.

I guess this first blog will serve as the background, so here goes:

I have been receiving treatment from a neurologist for my migraines for a little over six years.  My experience with migraines begins well before that, however.  The first episode that I can recall clearly was in high school, but in speaking with my family I believe that I may have had a migraine as early as fourth grade, but we didn't know that was what was happening at the time.

I am one of the migraineurs who experience migraine with aura (sometimes called classic migraines).  For a good description of migraine auras, click here

My aura is comprised of visual disturbances...first I experience distorted depth perception, followed by blind spots and finally a vibrating, waviness in my visual field.  The excruciating pain will strike within 15-30 minutes after these experiences.  This is accompanied by hypersensitivity to light, sound and scents, and nausea.

For a long time, I didn't know that I was experiencing migraines.  I remember sitting in my high school biology class, taking an exam.  As I read the exam paper, the words seemed to appear before my eyes, as if someone was typing them while I sat there.  I didn't know that I was experiencing an aura and that the blind spots were blocking the words...I thought that I was going crazy.  I began to feel nauseous, so I went to the nurse.  I did vomit, violently, and they sent me home.  The weirdest thing to me at the time was that while waiting for my mother to arrive I would hear conversations between people in the nurse's office, but I couldn't understand what the words meant.  Because I was so physically ill, I later chalked it up to a high fever causing delirium.  I never told anyone about the visual disturbances--I thought that people would think I was hallucinating and mentally ill.

Over the years, I learned that the visual problems meant that I would soon become sick, but I still thought that it was related to the flu or a fever.  It wasn't until about ten years later that I learned to associate the word "migraine" with my experiences.  I was volunteering with a group of Girl Scouts, and during lunch one of the mothers began explaining the symptoms of her migraines--which were the exact symptoms of the mysterious "illness" that I would experience a few times a year.  I was so relieved; I wasn't crazy!

The next time I visited my doctor I talked to her about my headaches and the accompanying symptoms.  She diagnosed me with migraines and prescribed me an abortive medication to take whenever I felt the symptoms coming on.  This worked well for several years, but gradually the migraines were coming with increasing frequency...from a few times a year to monthly.

My husband was overseas with the Navy when I experienced a particularly bad migraine.  I was working in a federal building, and all I remember is standing outside of a US Senator's office, on the phone with my mother in tears.  It was my third migraine in less than a month and I was terrified.  I knew I couldn't drive, so my mother had to come and pick me up.  The migraine lasted over two days.  Afterward, the entire left side of my head was completely numb.  I felt like a cyborg, or like the poster of Arnold Schwarzenegger as the Terminator with half of his face ripped off. Naturally, that was scary, so my mother rushed me off to the doctor's, while my husband overseas had no idea what was going on at home.

My doctor assured me that I wasn't having a stroke, but because the migraines were occurring more frequently, she referred me to a neurologist.  My husband was home for my first appointment, and we went to the appointment together.  Neither of us knew the turn that our lives were to take...that I was to be diagnosed with a disabling condition.

"Transformed" or chronic migraine.  Migraines that occur with increasing frequency...check.  Migraines that often recur after self-medication...check.  Often accompanied by anxiety and depression...check.  The doctor prescribed a cycle of steroids and abortives to break the cycle and determined that if we couldn't break the cycle with the medications, I might have to spend time in the hospital with IV meds.  I think that was the first time my husband realized how sick I was.  Suddenly I felt like an invalid, broken and defective, and I just wanted to get "fixed."  It wasn't to be...the doctor explained that there is no quick fix and that we would be working together for quite a while.  I consider us my "treatment team,"  my husband, the doctor and I--all working to keep me functional.