There are only so many ways to sign a high school year book, 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 and 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. The majority of high school track practices I ended up sit out on the bleachers, hiccuping. Now, I use the word hiccup because otherwise you would have absolutely no idea what I was talking about. Cause, in actuality the english dictionary and every medical text lacks a proper term for what I experienced. As I was sitting on the bleachers hiccuping, people running on the other side of the football field could hear me. 

 

When I would go to the beach, I would hiccup (hiccup sound) and a seagull would call and then I would hiccup (hiccup sound) and seagull would call. Until eventually, the seagull realized I was speaking gibberish and would move along. My friends as well learned pretty quick 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 (hiccups noise) and they would look around trying to figure out what had just happened. And of course for my friends and I this is totally normal, so we're carrying on as if nothing had happened. So they think they have gone just a little crazy or perhaps have 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.

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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.

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I would go out on a date and have to explain that being with me meant living with this noise. That was just a part of my life.

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I would go to class and I would hiccup. The professor and all of the students would stare at me and I would have to explain that this was normal and they should continue. Sometimes I was so disruptive that the professor would ask me to leave. 

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I would constantly meet strangers and have to listen to their advice and home remedies from strangers, as if I had never tried just simply holding my breath. That was just a part of my life.

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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 a part of my life.

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I couldn’t wear tight fitting cloths, 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 a part of my life.

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I had to force myself to eat, because even a few gulps of water increased that pressure too much. That was just a part of my life.

Sometimes, the hiccups would be so violent and come so rapidly after each other that I couldn't catch a breath. These times my friends noticed and would take me to the ER worried that I couldn't breath. That was just a part of my life. 

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Now I didn't hiccup 24/7, but I hiccuped almost everyday; for hours at a time. Sometimes, I would get really lucky and I might not hiccup for a week. Or I'd get super lucky and I might not hiccup for a couple of months. And it was after one of these periods that the hiccups came back. They always came back. But this time 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.

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Buoyed with this new knowledge and renewed hope, I returned to the doctor. I was a good little patient. I did everything that he asked, even the things I had done before and I knew wouldn't work. And though I told him as much, the doctor had me do them again. A month later, I was back in his office, hiccuping. He told me 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 “No where. The hiccups won’t kill you. You simply have to live with them.”

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“Well fuck you! You see me right now, right?! hiccuping and in pain! Fuck you! How dare you sentence me to a life of pain! The hiccups are killing me, slowly, every day. Fuck you and your egotistical high fucking horse! I know more about hiccups than you ever fucking will.” Of course I am much too polite to say that out loud, so I said it in my head. I smiled. I 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. And so I decided right there that I didn't actually have the hiccups. I had Intractable, Prolonged, Violent, Diaphragmatic Spasms aka the Nicole-hiccups or the niccup.

 

Taking everything I knew about hiccups and my family’s medical history, I followed my gut and changed my diet. I cut out 16 things and within a week I was a completely different person.  I no longer niccuped. The pain in abdominal pain went away. In fact, I realized that even when I didn't think I had any pain before, I did. I was just do used to it, that my body no longer registered the pain. Things I never associated with my hiccups link my wrist pain, neck pain, and my horrible acne, went away. I slept better and I had more energy than I knew what to do with. I dropped 10 pounds I didn’t need to loose. I felt amazing.

 

As great as this was, I am geeky scientist and I needed to know more. I needed to prove to every doctor I was never going to see again that the niccups were not just in my head. 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 essentially turn 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 and put them into pill capsules and I made a bunch jars. I gave this to had a friend and had them randomly assign letters. I got back a pallet of jars. I would take one jar and every day for two weeks or until I got the niccups, whichever came first, I would take the pills. Then I would draw a little smiley or frowney face of the jar and put it back in my cabinet. Then I would wait until I hadn't had the hiccups or any other symptom for at least a week, before starting all over. The whole thing took three years but at the end I knew exactly which six things I can't eat; wheat (even though I can gluten), cow-dairy, peas, peanuts, corn, or peppers. More than anything I cannot eat peppers. This was awesome!

 

Beyond that, because I was so systematic, I 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. That I have a type III hypersensitivity, which is an immune response but not your classic allergy, to certain foods causing my lymph nodes to swell. As my body tries to clearthe lymphatic fluid most of it pools in below my sternum, the cisterna chyli, curing me pain. The lymph then traveling up my thoracic duct along my spine and 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 vegus nerves, the two main nerve controlling the diaphragm. When my thoracic duct becomes enlarged it irritates these nerves causing me to niccup. Though I may never be able to test this hypothesis (though, believe me, I have thought about it), 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 a 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. 

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The true story of my 15-year journey with Intractable Prolonged Violent Diaphragmatic Spasms told live at the The Monti Season Opener: Heroes & Villains at The Carolina Theatre of Durham on Saturday, September 22nd, 2018.

 

By Nicole Allard in collaboration with The Monti

@explorationdiet

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