When Every Prescription for My Migraines Became an Experiment

Editor’s note: Please see a doctor before starting or stopping a medication.

As someone with a science background, I understand why doctors take a flowchart approach to problem-solving with me. Their steps are logical: I, the patient, am complaining of a severe headache, no abnormalities are present in MRI and other imaging, and some of my symptoms are consistent with classic migraine. They write a prescription.

In their view, the problem is solved. From my point of view, the problem is not solved until the pain is gone for good.

I’ve lost track of how many different drugs neurologists have tried on me. If I used a needle and thread to string every pill, tablet, and capsule onto homemade garland, I could deck the hell out of the national Christmas tree five times over.

Every prescription is an experiment. Let’s pick one and review.

Experiment number 27 starts when I wake up with a skull-splitting pain in my head and decide to try a new drug to abort the migraine. I read the side of the capsule as if there might be something meaningful there for me, then toss the drug down my throat. The tiny letters and numbers state the manufacturer and dose, but I would have preferred words of encouragement like, “One day you won’t need these anymore,” or, “This one works beautifully.”

I decide to go to work because I need to reserve my sick leave for days when I feel worse than this. I shuffle to my desk and collapse in the chair, wondering how I will get through the day. I try my best to be useful.

Under the direction of my intelligent, board-certified doctor, I swallowed a controlled substance and entered a portal to another dimension. I feel weird and different, but not better. The migraine is still there, my body is also still there in front of the computer, but my mind is in floating through space. Pistons are trying to pump but there’s sugar in my gas tank and I am unable to process information. I have another seven hours and 59 minutes on the clock and I don’t know how I will make it through the day. People are asking me for things, my inbox is full of messages waiting for a reply, and someone is already instant messaging me. The drug has given me the IQ of a cricket and I can’t even compose a simple response.

I catch myself looking to the right as if an explanation will appear in my peripheral vision like the scrolling yellow text that kicks off Star Wars films. Wait, what am I doing? I made a decision about something two seconds ago and forgot what it was. I am trying to grasp my thoughts before they slip away and am failing over and over again.

I suspect my brain has been replaced by other materials while I wasn’t looking and try to pinpoint what is there instead. It feels something like cotton bolls and densely-packed tumbleweeds, complete with all the filth and debris they picked up along the way as they rolled across the countryside and crossed rural roads. Having all this junk in my skull leaves no room for proper communication between neurons.

People are happy to see that I have returned to work and ask how I’m doing. I confess that I don’t really feel better but appreciate their concern. They seem inconvenienced by this answer and wish me well without admitting they’re irritated that I’m not my normal happy self. The list is short when it comes to people who are truly willing to be with me through the tough stuff. I pay attention to this list on days when I can think and feel properly.

Right now, I am struggling. Light hurts. Sound hurts. I’m exhausted. Something is wrong but I can’t figure it out or name it because I’m too incapacitated to be able to describe anything. My brain is not working properly and I am in despair. I refuse to believe this is how it’s going to be for the rest of my life but worry that I am mistaken. I imagine someone pressing the womp-womp sound effect button you hear on game shows when you get the answer wrong. “Sorry, Raesin,” says the host. “The correct answer is you’re screwed. It’s going to be like this forever. But don’t lose hope!” The audience applauds and smiles at me, nodding in support.

I return to neurologist number three and explain my difficulties with the drug. He suggests I try another pharmaceutical that works for many of his other patients. Somehow I know I am different from his other clients but have no rational explanation for why I’m convinced of this. I try to feel hopeful and return to the pharmacy, happy to take a placebo or anything else the doctor might have prescribed that could do the trick. The next drug doesn’t work, and neither does the next. I worry about losing my job and know the threat of that is real.

Years go by and I grow weary of being the sole test subject in my own clinical drug trials. After over a decade of listening to all the people who insist there must be something I can take for the pain, I turn to a new armchair expert – myself. By deeply listening to what my body has to say, I identify food triggers one by one and eliminate them from my diet. Goodbye, food colors and preservatives! So long, palm oil and gluten! As a result, my battles with debilitating headaches and brain fog are fewer in number, I rarely miss work, and though I’m in pain every day, I’ve never felt better.

For those of you who intimately know the experience of physical and/or mental struggling, keep pushing, know you are not alone, and remember to listen to the wisdom of your own precious body.

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