Every story starts somewhere.
And the beginning of this story is very clear.
It was Thanksgiving, and I was 13. I was sick. When I say I was sick... we aren't talking about a little cold or a sore throat. My mom was in PA school, so we were certainly not overly cautious. I didn't go to the doctor for every little thing.
By the third day, I truly thought I was dying. I hadn't eaten anything, and I had only had a few sips of water. I had flu-like symptoms, and we all know that the flu really sucks. At this point, it became very clear to me that this was NOT the flu. I woke up with a pounding head. Well, not pounding. Throbbing. Throbbing doesn't really cover it, either. Imagine an ice pick lodged in your skull, and throbbing sensations all around the ice pick... but always worst right where it's stuck. Add on top of that extreme light sensitivity and the sound of your own heartbeat being deafining.
I lay on the bathroom floor, writhing in pain, shuffling between choking through the tears and gagging from the nausea.
I managed the words, "Mom, this is the worst headache of my life."
I struggled with sinus headaches as a kid. The relatively new restrictions on Sudafed are irritating to me because I have spent my entire life depending on them. I vividly remember the candy-like coating they sported when I was young. So... when I said it was the worst headache ever, that was saying something.
My mom tells it like a movie. I uttered those words and she was in a flashback to class. "Remember, first and worst." The first headache this significant, the worst the patient can remember... it's a big deal. This could be a tumor. A bleed. Any number of things. It could be a migraine. (A migraine seems like the best option, right? After years to reflect... it's not.)
We went to the ER. I was given drugs. To be honest, I felt like I wasn't being taken seriously because the drugs did nothing. Turns out, I'm a part of a small percentage of the population that burns off Toradol too fast. (Another story on that later!) The doctor hung out in the room for a few minutes, visiting quietly with my mom about PA school. After two to three minutes, I cried out, asking how long until the meds kicked in.
The doctor... well, I didn't see the doctor. I could barely see anything at that point. He sounded concerned. He asked me how I was feeling and said the medicine was given in my IV and I should be feeling better. I don't remember what I said anymore. I just know that I made it abundantly clear that I was not okay. He pushed morphine immediately, and I passed out.
Moments later, I woke up to a dark room, and my mom looking worried in the chair across from me. I was so weak, and I was crying. I begged. "Mom, when will they do something for the pain?"
The truth is, it hadn't been moments. Sixteen hours had gone by. It was the next day. My mom, frustrated, exhausted, worried... explains how long I've been asleep. A new doctor comes. The other had gone home hours ago. I was sent home.
I went home, and I suffered for another day. When I woke up on day six... it was gone. We chalked it up to a terrible virus and moved on with our lives.
By Christmas, I was feeling a little under the weather again. It lingered, but didn't worsen much. On a bright winter day in mid-January, I woke up to another terrible headache. The pain was unimaginable — twice as bad as the last. We went to the hospital. Bloodwork, CT, MRI. Nothing. Healthy as a horse.
This time was different, though. That headache came and it never went away. Some days were better than others, but I was in constant pain.
The years of treatment are too long to detail. I was fired from more than one doctor for reasons including: we think you're faking; your mom has Munchausen's; we don't know what else to do. I tried every drug on the market. Seriously, you name it, I've taken it. Nothing worked. This was back in the day when Imitrex was the new wonder drug. It was $100/pill back then. It did nothing. Nothing could even touch it.
I was in junior high. I had been an A student, involved to the max: cheer, band, model UN. At this point, I was barely attending classes. My principal saved my ass (thank you Mr. M) and would excuse my absences without a doctor's note. He was one of the few who really believed I was suffering and he knew my mom couldn't afford a copay every single day. To this day, I'm pretty shocked I made it through high school. MPS is not the most flexible district in the world, but allowing me to switch to online school and do my work at 3 AM in the dark if I had to genuinely saved me and allowed me to graduate on time.
The attempts at treatment continued and they continued to fail. I ultimately relied on strong pain medications to get me through the hard days. They affected my mood. They didn't take away the pain; they just numbed me to it a little — if that makes any sense. I came to rely on nausea meds to get any sleep or eat anything.
I was young, and my weight, mood, appetite, and demeanor all depended on what medication I was taking. My doctors all gave up on me. I was in pain constantly. People were tired of me flaking. They were tired of dealing with my pain. I was extremely depressed and struggled to maintain a will to live.
Fast forward a few years. I've had migraines for ten years at this point. Three thousand six hundred and fifty days... all with pain. I'm married, have a home, and a job. By some miracle, I catch the name of an amazing neurologist who specializes in migraines. I beg for an appointment, explaining I've spent ten years with a bullshit diagnosis of "chronic daily headache." I explain that recent neurological publications have indicated pain medication is not an acceptable treatment for migraines and no one will write me anything anymore, that I have nothing to take and nothing to help and that I need someone who won't give up on me.I had to wait, but I got an appointment.
Give up on me, he did not. I've been seeing him for three years. We've tried a laundry list of meds. I settled in to a routine of two major medications — both used for treatment of migraines, bipolar disorder, and seizures. I took high doses daily along with a medicine cabinet full of emergency meds. This man has been able to give me migraine free days.
In the last three years, I've come to believe that a normal life was possible. Other people have shared migraine success stories and it had become glaringly obvious that that was not me... but recently, that's changed.
My neurologist told me that I'm his worst patient. His most difficult. Not because of me and my personality, but because my migraines are ever-changing and persistent. They fight to live while we fight to defeat them.
Today, I am drug free. I don't take any medications anymore, and get botox a few times per year. And you know what? My head doesn't hurt.
Is botox the answer? Maybe. Maybe not. The point is, someday you WILL find the answer. I hope it's easy. I hope you don't suffer long — because, friend, I know that suffering. I can tell you, though, that for every unanswered question and every negative test result you will eventually have a pain-free day. They may come long after you lose hope. You may have to live many days for the sake of others. Just keep living.
There is more to my story. Stay tuned!