The story of Nicole
Just a Part of My Life
Nicole’s Story
There are only so many ways to sign a high school yearbook. However, I can pretty much guarantee that not a single one of you has this written in yours. “Nicole, you sound like a constipated pig. Gunna miss you next year!” Now this wasn’t an inside joke, just simply a friend stating the facts.
I don’t actually know the first time it happened. I was a completely normal-sounding child. Then I went through puberty, and randomly sounding like a constipated pig, or a strangled cat, or a baby seal that lost its mother, was simply a part of my daily life.
For the majority of high school track practices I ended up sitting out on the bleachers, hiccuping. Now, I use the word hiccup because otherwise you would have absolutely no idea what I was talking about. In actuality, the English dictionary and every medical text lacks a proper term for what I experienced. As I sat on the bleachers hiccuping, people running on the other side of the football field could hear me.
When I went to the beach, I would hiccup (hi-CAAAAW) and a nearby seagull would call back. And then I would hiccup (hi-CAAAAW) and the seagull would call back again, still mistaking me for another seagull. Eventually, the seagull realized I was speaking gibberish and would move along.
My friends learned pretty quickly as well that they simply had to ignore the noises I made. In college, we would be out at a bar and somebody new would join our group. I would hiccup (hi-CAAAAW) and they would look around, trying to figure out what had just happened. Of course for my friends and me this is totally normal, so we’re carrying on as if nothing had happened. Inevitably the newcomer would think they had gone just a little crazy or perhaps had too much to drink. But then they would catch me in the act and laugh. And my friends and I would laugh, reminded of just how ridiculous I sounded.
But eventually I stopped laughing along with strangers. I stopped going to the doctor and I just accepted that the hiccups were a part of my life.
I went out on dates and had to explain that being with me meant living with this noise. That was just a part of my life.
I went to class and I would hiccup. The professor and all of the students would stare at me and I had to explain that this was normal and they should continue. Sometimes I was so disruptive that the professor would ask me to leave. That was just a part of my life.
I constantly met strangers and had to listen to their advice and home remedies, as if I had never tried just simply holding my breath. That was just my life.
And the pain in my abdomen like an overinflated balloon or some creature trying to push through my body just below my sternum, that was just my life too. I couldn’t wear tight-fitting clothes, or cross my arms, or wrap myself in a blanket, because even just the weight of a baggy tee-shirt against my abdomen was too much. And that was just my life.
I forced myself to eat, because even a few gulps of water increased that pressure too much, increased the pain too much. That was just my life.
Sometimes, the hiccups were so violent and came so rapidly after each other that I couldn’t catch a breath. These times my friends noticed and took me to the ER, worried that I couldn’t breathe. That was just a part of my life.
Now, I didn’t hiccup 24/7, but I hiccuped almost every day, for hours at a time. Sometimes I got really lucky and I didn’t hiccup for a week. Or I got super lucky and I didn’t hiccup for a couple of months. It was after one of these periods that the hiccups came back, they always came back. This time, though, it was different. This time the pain just below my sternum came first; and then I hiccuped. This was the first time in 15 years that I knew the pain came first. Up until then, I assumed that the hiccups came first or that they were the same. To me they had been indistinguishable.
Buoyed with this new knowledge and renewed hope, I returned to the doctor. I was a good little patient. I tried everything that he suggested, even the things I had tried before and I knew wouldn’t work. Though I told him as much, the doctor had me try them again. A month later, I was back in his office, hiccuping. He told me he didn’t know what was wrong. I wasn’t terribly surprised; nobody had ever known. But I still had hope, so I asked him, “where do I go next?”
He looked at me and said “Nowhere. The hiccups won’t kill you. You simply have to live with them.”
“Well, f*** you! Do you see me right now?! Hiccuping and in pain?? F*** you! How dare you sentence me to a life of pain and misery! The hiccups are killing me. Slowly. Every day. F*** you and your egotistical high f***ing horse! I know more about hiccups than you ever f***ing will.” Of course I am much too polite to say that out loud, so I said it in my head. Smiled. And left his office, fuming.
But I realized I was right. I did know more about hiccups than he ever would. I knew more about hiccups than probably anybody ever would. I had read everything I could find on them: every scientific paper, every case study, even the ones that didn’t apply to me, every internet forum, everything. But more than that, I had lived with hiccups for 15 years. I knew down to my core what hiccups were. So I decided right then and there that I didn’t actually have the hiccups. I had intractable, prolonged, violent, diaphragmatic spasms: aka the Nicole-hiccups or the niccups.
Taking into account everything I knew about hiccups and my family’s medical history, I followed my gut and changed my diet. I cut out 14 staple ingredients and within a week I was a completely different person. I no longer niccuped. The pain in my abdomen vanished. So much so, that I realized that before, when I thought I did not have any pain, I did. I was just so used to it, that my body no longer registered the pain. Things I never associated with my hiccups, like my wrist pain, neck pain, and my horrible acne, disappeared. Even my bizzare and vivid dreams stopped. I slept better and had more energy than I knew what to do with. I dropped 10 pounds I didn’t need to lose. I felt amazing.
As great as this was, I am a geeky scientist and I needed to know more. I needed to prove to every doctor whom I was never going to see again that the niccups were not just in my head. To prove that I was not simply stressed out. To prove that I was not some ignorant little girl seeking attention. So, I did a double-blind experimentation diet on myself.
I was lucky enough at the time to be working in a lab with a lyophilizer, which is this big piece of equipment that essentially turns liquid, such as pureed green pepper, into a powder. So I powdered up all of these different things that I cut out of my diet. I brought them home, put them into pill capsules, and made a box of jars. I gave the box to a friend and had him randomly assign letters to each set of pills so that I didn’t know what each jar contained. I randomly selected one jar and took the pills inside every day for two weeks or until I got the niccups, whichever came first. Then I drew a little smiley or frowny face on the jar and put it back in my cabinet. Then I waited until I hadn’t had the niccups or any other symptom for at least a week, before starting all over.
The whole thing took three years but in the end I knew exactly which six things I couldn’t eat: wheat (even though I can eat gluten), cow-dairy, peas, peanuts, corn, or peppers. More than anything, I cannot eat peppers. Just knowing this, was awesome!
Beyond that, because I was so systematic, I now know how my body responds when I eat something I shouldn’t. Taking this and all of my knowledge, I have this pretty solid hypothesis: I have a type III hypersensitivity, which is an immune response but not your classic allergy, to certain foods which causes my lymph nodes to swell. As my body tries to clear the lymphatic fluid, most of it pools just below my sternum, in the cisterna chyli, causing pain. The lymph then travels up my thoracic duct along my spine, making a little curve just below my collar bone before returning to the vascular system. As the thoracic duct makes this curve it is sandwiched directly between the phrenic and vagus nerves, the two main nerves controlling the diaphragm. When my thoracic duct becomes enlarged with lymph it irritates these nerves, causing niccups. I may never be able to test this hypothesis (though, believe me, I have thought about it), but for now I am just content that the niccups are no longer a part of my life.
For 15 years, my body waged war with itself. These battles changed the way my body felt. They changed the way I thought about myself, the way I interacted with the world. And they convinced me that this was just my life. But inside of me, there was a fighter. And she was not ready to surrender. She was not willing to believe that chronic pain and misery were acceptable. I am sure that most doctors try and that they care, but they failed me. They didn’t listen to me. They underestimated me. I was a woman armed with knowledge – and nothing was going to stand in my way, not even a hiccup.
This story was developed in collaboration with The Monti and told live at their Heros and Villians show on September 22nd 2018 at the Carolina Theater. The recording can be viewed at themonti.org/stories/the-monti-video-series-nicole-allard