Thursday, June 2, 2016

Hiding in the Shadow of Migraine

"Hiding my migraines on the set may have been my toughest challenge as an actor. There were times when the pain from migraine headaches was so severe that I literally had to crawl across my dressing room floor. But I couldn't let anyone know. If they thought I might slow production, I figured that would end my career."
~Morgan Fairchild

"I can't tell you how many shows I've done with full-blown migraine headaches."
~Jonathan Taylor Thomas

"This is a soul under perpetual migraine attack."
~Richard Schickel

Despite all the evidence that migraine is a neurobiological disease, we still feel the stigma of migraine.

Having lived with migraine for 50 years, I have seen advances. Gone are the days of seeking emergency care to get a shot of a narcotic, so I could hopefully ride out the attack, but even that resulted in a miserable narcotic hangover headache. It's a sad commentary, when misery is the better scenario. Unless you have migraine disease, you simply cannot understand what that means. It is so much more than a bad headache. It will cause sane people to do crazy things.

"I didn't feel physically sick. But mentally. My mind was twisting in so many ways. (...) We once saw a documentary on migraines. One of the men interviewed used to fall on his knees and bang his head against the floor, over and over during attacks. This diverted the pain from deep inside his brain, where he couldn't reach it, to a pain outside that he had control over." 
― Jay Asher

A few years ago, while on respite in the Rockies, I suffered a horrible attack. I awoke at 4 a.m. (What I have come to term migraine reveille). Nothing helped and I spent that night in unbelievable pain, vomiting and having diarrhea. None of the tools in my kit worked. It was refractory.

As with nearly all my migraines, my right eyelid was drooping, and my right eye was crossed. My entire scalp was numb and tender, so I couldn’t hold my hair to keep it out of the way. On the second morning, I knew I needed help. So my husband contacted the ranger and we made our way to urgent care in a nearby town. It was a pain filled and anxious journey, because I had to leave the security of my commode.

On arrival, despite looking ragged, rugged, and severely ill and having symptoms that could suggest I was having a stroke—I heard the comments. “This one SAYS she has a migraine”. It wasn’t until after I told them I needed an Imitrex injection and supportive care that they established eye contact. That’s when I was wheeled to a gurney. My blood pressure was through the roof despite severe dehydration (and a lifetime of combating low blood pressure). I was decompensating, my body’s fight or flight response was in full gear, I knew it, and they knew it. Now they were yelling for the doctor as they put me on a cardiac monitor. Urgent care began; IVs with electrolytes were started; I got my Imitrex(R) injection and something IV for vomiting. I also got a muscle relaxant, because cervical neck disease, myofascial painsyndrome, and occipital neuralgia are among some of my triggers. All effects of a refractory migraine need to be considered to break the cycle. When my symptoms improved, and my vital signs stabilized, I had something to say.

Having been a board certified emergency RN; I knew their judgmental attitude was inappropriate, and as a past legal nurse consultant, I can say, their behavior was neglectful. I said some of the following at the time, some I included in my letter to the administrator, but I think you will get the gist. I told them:

·        It’s important to understand migraine.
·        Establish eye contact with your patient.
·        Take a good history and do a physical exam, including neuro checks.
·        Sick people seek drugs too, and you should be compassionate when you hear the word migraine, not make judgmental statements.
·        I am acutely aware that addicts say they have migraine to get narcotics.
·        Not all migraineurs respond to abortive medications and patients look to you for treatment.
·        As urgent/emergent care providers, you should know what is in your arsenal to help the migraineur.
·        Because a migraineur asks for a narcotic, it does not mean they are an addict. It could mean a narcotic is the only thing they have been offered in the past, there could be a variety of other reasons, but you won’t know without that history.  
·        How you respond could mean the difference between helping and contributing to stress, including suicide. It has happened.
·        Even though I will not start the HIPPA complaint process, you violated my rights to privacy by discussing my case where others could hear.

In a teachable moment, I emerged from the shadows of migraine.

Many migraineurs live in the shadow of their disease, do you?

Learn how to get started, here. (Updated June 2018)

(Signature line appended June 2018)

In healing,

Celeste Cooper, RN / Author, Freelancer, Advocate

Think adversity?-See opportunity!

~ • ~ • ~ • ~ • ~ • ~

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