Today was a rough day. It was the day of my yearly physical. I am pretty healthy barring being overweight and the fact that I have a blistering hot pain in my eyeball, temple, and neck on most days.
It feels like a lifetime ago when I didn’t have painful headaches, muscle spasms, and wakings at night from what feels like a lightning strike in my head. But I refuse to give in, this pain must have a root cause. And I will find it and heal it.
My everyday doctor is a kind, two years fresh out of medical school physician. I don’t mind that he is inexperienced. I am not unhealthy enough to need someone with experience. I just need someone to review my bloodwork and refill my asthma inhaler prescription.
But this visit was different. As I explained to him how I was feeling and what the neurologist told me, it was obvious he had no clear understanding about what paroxysmal hemicrania is or how to treat it. (but, honestly, who would know unless they were a neurologist or a sufferer of PH)
He urged me to start the treatment the neurologist had recommended last year. He even went as far to prescribe me additional medications on top and oxygen. OXYGEN tanks! Even though I continuously reminded him I wasn’t interested in a prescription route. In fact I was there to get a referral to a physical therapist for treatment while I was getting my yearly blood work.
I just smiled politely through his repeated urgings and my repeated refusals for me to take the medicine…. that is until I burst into tears .
I have never communicated well with doctors. I’m not a fan of whining to an almost complete stranger. Plus, in my mind there is no way in one brief consultation can grasp the whole picture of what I’m dealing with. This makes me reluctant to place the outcome of my health and life into their hands. I always leave with just as many new questions as I do the ones that were answered and I like copious amounts of time to process these decisions.
I have to follow my gut on this. I am uncomfortable taking a medication with a listed side effect of “sudden death” or “internal bleeding”.
Right now, my gut keeps urging me to find a causation for the pain, not just to treat the symptoms, i.e. the pain.
I think there’s a good chance it is structural. I want to exhaust all those avenues before I give into taking the pills. I don’t think the pills can fix whatever is wrong, only mask and drag this out longer
My tears prompted the doctor to ask if everything was okay at home. As if the searing blinding pain to my head multiple times a day is not enough to make me look insane on its own. That the uncertainty of when the next smite against my temple from an unknown villain wasn’t enough to bring a girl to tears by itself.
In case you were wondering, everything is fine at home. My husband is my biggest cheerleader and he supports this expensive journey full force. He asks me how I’m feeling, what he can do to help, and lets me hide away when the overwhelm becomes too much.
I am weary today from thinking too much about the next inevitable assault on my nervous system. So the prescriptions sit at the pharmacy waiting to not be filled and I have a massage scheduled.
Paroxysmal Hemicrania can’t you just go away already