Chiari - Long Road to Diagnosis
It started with a cough.
I was in high school when colds started lingering. The family doc prescribed muscle relaxers for an overactive cough mechanism—the first of many unneeded and unhelpful medications and the first of many failed attempts to diagnose the problem.
In college another doctor prescribed Meclizine for dizzy spells. I didn’t tell her that I also had trouble swallowing because asking why beer bongs made me choke just didn’t seem right.
I’ve always gotten carsick. Always been a klutz. Always walked into people, walls, tables. Always spilled food and drinks. A rotating wardrobe and a few bumps and bruises were no big deal, but…
Poor balance and coordination are also symptoms.
When I moved to Florida after college, the cough got worse. My first doctor in the Sunshine State plucked a brochure off his wall and while reading it decided I probably had asthma. I went home with an Albuterol inhaler.
A year later, a new doc sent me for pulmonary tests in a space-age machine that was sure to tell me what was really going on in my irritated wind bags. It was the first of many tests to conclude that I didn’t have asthma, but I was still coughing so the new doc prescribed a new inhaler and Advair. My insurance covered it, so why not?
Enter my idiot phase.
I drank. A lot. Even worse, I smoked.
A lot.
It was the one habit I said I’d never start, and there I was timing drives by how many cigarettes it took to get from point A to point B (in Wisconsin we used beers to do the same thing). It’s no surprise that the cough got worse.
What was surprising was the pain that started a few years after I moved back to Wisconsin. Coughing, laughing, sneezing, bending, stooping, pooping, sitting up, lying down…these simple things triggered headaches that brought me to my knees and became the dominant force in my life. The pain, like a swift smack to the back of the head with a sledgehammer, froze time. No matter what I was doing when it started—driving, working, walking in a crowd, standing in a grocery line, sitting on the toilet—I had to stop moving, hold completely still, and wait. If I didn’t, the pain would build until my face went numb and eyes threatened to pop out of my skull. Only when I finally succumbed to the torture and held still long enough to let the pressure recede would life return to its somewhat normal state again.
Since coughing was the head pain’s biggest trigger, I gave up cigarettes completely.
The next doctor I saw in Wisconsin confirmed I must have asthma—because that’s what the other doctors before her had been treating—and the gargantuan head pain was “cough headaches” brought on by extended periods of cranial pressure. My new doc thought if we could cure the cough, the headaches would follow, so we tried a fresh assortment of pills and inhalants to get the cough under control.
A year or two later, the cough was NOT under control, and while working a stressful job in a large company with poor ventilation, I was getting sick all the time. Like, ALL THE TIME. There was always a bottle of cough syrup within reach—one in my purse, another on the desk, a third on my bedside table, and a fourth waiting in the medicine tote—so I could suck a few pulls at the slightest tickle in my throat.
Sick = more coughing than usual = pain = PAIN = FUCKING PAAAAAIIIIINNN = IS THIS EVEN REAL THIS IS FUCKING NUTS I’M IN SO MUCH FUCKING PAIN.
I changed doctors again, this time meeting a lady only once who prescribed an anti-depressant because I broke down in tears begging her for help. But I wasn’t depressed. Not yet. I was in pain with no quality of life to speak of, having tried countless medications with no relief, and desperate for a doctor to take me seriously.
Okay, maybe I was a little depressed by then.
This doc said that sometimes coughs were caused by stress, and if we could get the stress under control, the cough would follow, and maybe—just maybe—so would the pain. I lasted about two weeks on Citalopram. The day I couldn’t pronounce the word “panini,” the pills went in the trash.
In January of 2016 I found another new doctor and was very clear that we needed to get to the bottom of the problem, not just treat the symptoms. You’d think I was speaking a foreign language, but my newest doc obliged, and she sent me for a scope (negative), chest x-ray (also negative), and to see an asthma and allergy specialist.
The specialist experimented with new medications, usually steroid inhalants, every six weeks to see if anything worked. I saw short-lived relief with Dulera until my insurance company required that I replace costly Dulera with two alternative medicines to see if together they produced the same effects. Since I was already taking more than my fair share of prescriptions, swapping the only fairly effective cough treatment I’d ever been prescribed for two unknown treatments was…well, it was just fucking awful.
Around this time the specialist performed an allergy test and found that I was allergic to basically everything, including every tree in my yard, and the cats in my own home. He assumed THIS was the root of my problems and ushered me out of his office with pamphlets on how to reduce allergens in my life.
I had my second pulmonary test in early spring of 2016. This test involved sitting in a chamber where they tried to induce an asthma attack. You’d think hearing your doctor tell you that—yet again—the tests came back negative would be a good thing. In my case it only added to the frustration and sense of hopelessness. If this wasn’t asthma, what the hell was it?
By this time, I had been coughing for more than a decade, and suffering debilitating headaches for several years. I was afraid of everything. Any change in the environment might trigger a cough. I was never without bottles of water and cough syrup in my purse and drank more Vicks 44 than any human should ever consume. I tried lemon and honey. I tried the supplement Butterbur since it was supposed to help with headaches. I tried drinking dragon’s blood (resin from the Sangre de Grado tree in the Amazon; definitely not recommended). I even considered giving up my cats which likely would have ended in divorce. At my worst I was taking six medications a day, most of them steroids, and was living in constant fear of the near constant debilitating pain.
In May of 2016, after a total mental breakdown and what I can only describe as divine intervention, I stopped taking all of my medications cold turkey.
Within weeks the coughing cleared up almost completely. I wasn’t well, but I was getting better. In hindsight I see that the very medicine that was supposed to quell the cough actually exacerbated it since my lungs weren’t the problem. At the suggestion of a friend, I went to see a chiropractor for the head pain. After my first visit, the chiro sent me for an MRI. He was the first doctor to be more concerned with the pain than the cough, and I can’t thank him enough for that.
In the fall of 2016 the MRI found that I had an 18mm Chiari 1 Malformation. The intrusion of my cerebellum into my spinal column was the cause of ALL my strange symptoms, most notably the cough and headaches. After nearly fifteen years I finally had my answer. It was a huge relief, but it was only the beginning of a brand-new journey.
Now that I knew what I had, how the hell was I going to fix it?