Hyperosmia: When Odors Rule Your Life

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I recently smelled gas in one of my tenant’s kitchens, but no one else could smell it. When the gas company guy sauntered into the kitchen he pre-diagnosed dismissively, “I don’t smell anything.” With a sigh, I replied, “I know but trust me, there’s gas leaking.” Sure enough, he discovered two “baby leaks in the gas pipe behind the oven so wicked small that most people would never smell them.” To me, the smell was as strong as if someone was holding my nostrils to an open gas line.

I stopped being “most people” a year and a half ago, during an acutely stressful time, when my sense of smell started to intensify. Since then it’s grown so extreme, it’s like living inside an Oliver Sacks story or an X Files episode. My ability to constantly smell minuscule particles from extraordinary distances, has become more dog-like than human, shrinking my life to the size of a bubble.

I can no longer go wherever I want to, or spend time with whoever I’d like to, without physical discomfort and severe anxiety. Every time I consider leaving my house or spending time with people, I run it through a mental cost benefit analysis. These days, costs are such that I keep errands to a bare minimum, and rarely spend time with people. When I do, it’s typically outside, and only with very low-scent friends, who are heaven-sent but hard to come by. But as my sense of smell continues to escalate, my nose is starting to detect non-stop product smells even on my low-scent friends. To my dismay, the threshold keeps moving. Thankfully we live in the Skype era so I still get to “see” my people; to say that video chat technology is saving my life is not an exaggeration.

To get comfortable, sensorily, I have to retreat deep into the woods, which is a silver lining of this nightmare, or hide out at home where I live alone. My apartment feels like a sunny, colorful house arrest situation with handmade throw pillows, secondhand shag rugs, and a Peekapoo with giant button eyes. I don’t know where I’d be without those eyes.

Whether I’m at CVS, the bank, the dentist, or a friend’s home where she uses Tide-like detergent or mainstream cleaners, I feel like someone is dunking my face in a vat of chemicals, and holding it there. I smell everything, natural or synthetic, good or bad, intensely and from unbelievable distances. Also, my nose doesn’t acclimate and eventually stop noticing smells, like a normal smeller’s does. Like a wiggling rabbit nose, it’s on constant high alert, no matter how innocuous the smell or how hard I try to get it to relax.

Chemical smells can make my lungs feel like someone’s pouring hydrogen peroxide over an open wound. Most remarkably, even if I’ve only been somewhere for ten minutes, I arrive home with the smell of detergents and cleaners in my hair, skin, and clothes, and have to change and sometimes shower. After days of hanging in my back hallway, the clothes often still smell. Following a recent hour and a half dentist appointment, I twice washed the clothes I wore but I can still smell the chemicals from their office. This is the stuff of science fiction. I should just start buying disposable clothes.

While in my apartment, I’ve smelled leaking gas from an unlit burner left on in the apartment below me, even when the woman in that kitchen didn’t smell it. When I open an Amazon delivery box, I can smell the packer’s detergent. I can smell plywood on a house being built nearly a block away. I could smell a recent oven repairman’s melange of detergent and weed twenty-four hours after his visit even though he was only in my home for forty-five minutes and I’d continuously run an exhaust fan in the window. I can smell the artificial air freshener in a car that whizzes past me with its windows down. Last summer, after hugging a friend who was wearing sunscreen, my no-hugging policy was born because no matter how many times I washed my face I couldn’t stop smelling her sunscreen. I haven’t hugged a human in months. There’s a research study that concluded worms become super-smellers when deprived of touch. Since then I’ve been stroking my own skin more often.

I adore my back porch and crave it all winter long, but these days, I’m driven back inside because of the overwhelming synthetic smells pouring out of my neighbors’ dryer vents. I can’t keep my windows open for the same reason, which might explain my current obsession with a 24/7 loon nest cam on a lake in New Hampshire. I keep the lake sounds playing in the background on my computer continuously, just to hear the outdoor soundtrack I savor in the springtime when my windows are open. On hot nights when I would melt to death without my window open while sleeping, I have to hold a piece of cloth over my nose, or wear a mask, to block incoming smells. Going for a walk in my densely packed urban neighborhood is like wading through a haze of dense odor fog. Also, there’s a whole lot more pot smoking going on in this city than “most people” realize.

If I didn’t want my sense of smell to normalize more than anything I’ve ever longed for, I’d try to get rich off this supernatural ability.

As an interior redesigner, my home is my favorite piece of work, and I treasure having people over often to enjoy it. I have a finished attic space for house concerts and movie nights. That’s all stopped now, including my business since I can’t comfortably spend time in most people’s homes. This winter, I tried re-opening my attic for a movie night, but was left with other people’s product smells for weeks. I can’t even comfortably have my best friend over anymore.

My apartment is the closest thing I’ve got to a refuge from a world of non-stop smells, and I’ve become fearfully militant about keeping it that way. Recently my smell has ramped up to the level where I’m now continuously noticing smells in my home that used to go undetected. The other day I was so exhausted from smelling things in my apartment, I tried using a swimmers nose-plug for twenty minutes. The shutting down of my sense of smell created instant relief, mentally and physically. It was heaven. But it’s awfully hard to breathe with a nose plug.

Recently my brother and his family came to visit. Usually they’d stay with me, but I had to decline, so they stayed in a hotel. While we were out to dinner (restaurants can be more manageable since food smells temporarily mask chemical smells), my six year old nephew begged to have a sleepover with his Auntie. Out loud, I promised to him, “Some day.” In my mind, I dropped my face into my dinner, in despair.

The inability to travel overnight, even locally, is maddening. This winter, a group of favorite friends booked a getaway in Western Massachusetts and last weekend my brother graduated from the University of Vermont, twenty years after his original studies, but I didn’t make it to either because finding a place to lodge that’s all-natural and low-enough-scent for my bloodhound system would be impossible. I refer to my worst emotional days as “despair days”, when the grief about the profound restriction and isolation in my life overwhelms my ability to cope. My brother’s graduation day was an epic despair day.

When I’m invited to a party or to hang out with a friend who doesn’t know about my bionic smell yet, it’s humiliating to reveal because I worry it sounds like madness. Truth is, many days it feels like madness, or at least that it could drive me to it. All day long, most of my moment by moment attention is consumed by smells and anxiety about smells, making it very challenging to concentrate, or feel safe in my body. I have a new profound empathy for what it must be like to battle the intrusive thoughts and compulsions of OCD, or to hear voices or see things that aren’t there, like with schizophrenia. Except in my case, I know the smells are there. I just smell them at an intensity, and from a distance, no one else can. And no one has any idea how hard I’m trying, moment by moment, to force my brain’s obsessive attention away from smells and anxiety and physical discomfort. It’s astoundingly lonely.

Waiting for a recent doctor’s appointment, I noticed the woman a few chairs over from me was carrying a whimsical metal lunchbox. When I told her I liked it, she smiled with embarrassment and said that over the last few months her husband had developed such a crazy sense of smell that the smell of her leather purse was too strong so she had to use this metal lunchbox instead. My heart sank for her husband, but I also felt momentarily less alone with this sensory madness.

When my sense of smell first intensified, I googled things like “crazy sense of smell” and “I smell things constantly.” I discovered that this poorly understood neurological phenomenon is referred to as hyperosmia or super smelling. I also found countless reports of other isolated humans desperate to understand what’s happening to their previously normal sense of smell.

It’s impossible to find well-researched information about causes or treatment for hyperosmia. But it’s easy to find message boards of desperate people trying things like Claritin or Zinc because both have been reported to cause total loss of smell in some users, or people asking things like, “Is there a surgery that could cauterize my sense of smell?”

There are a handful of Smell and Taste Treatment Centers around the country, mostly housed at research universities, but they deal with the much more common smell disorders, like hyposmia, reduced smell, or anosmia, total loss of smell. I regularly fantasize about developing anosmia, even if meant I’d lose my sense of taste, which is often the case when you lose your sense of smell. I’ve contacted some of these treatment centers, asking if they can help people with hyperosmia. Not much luck so far. It seems that the condition is so rare that the research has been very limited.

Why people develop this disorder is a mystery but one thing is clear from functional MRI studies: the portion of the brain real estate devoted to olfaction in super smellers is much larger than for normal smellers. Basically I have way more smell neurons than “most people”. Some speculate that Lyme disease can be a cause. I’ve also wondered if this might be an extreme perimenopausal symptom. Depending on where I am in my menstrual cycle, the crazy level of smell can get even crazier, and I’ve found women online who believe that hormones gone wild are the cause of their sudden, intense olfaction. Ask anyone who’s been pregnant if hormones effect sense of smell. I’ve also learned that our sense of smell is the only sensory perception housed in the same region of the brain as emotions. I wonder if my heightened emotions at the time my hyperosmia began, played a role in the onset, causing some bizarre cross-wiring.

The brain is a vastly complicated organ, and there are probably hundreds of reasons why someone’s olfaction could go haywire. In my case, this bionic smell condition is the latest, most extreme disorder in a long lineage of hard to treat health conditions I’ve experienced since I was 24. Like the other conditions that precede or co-exist with my hyperosmia, my intuition tells me that they may be physiological and neurological manifestations of childhood trauma, outcomes of a nervous system that’s been stuck in a continual state of fear and threat. I experienced severe, repetitive medical / sexual trauma from birth until four years old, held down and catheterized a dozen times without my parent’s presence, in addition to urethral surgery and countless ultrasound procedures. I was also on antibiotics every day, multiple times per day, for the first four years of my life for the unremitting urinary tract infections. I’ve learned that midlife is a common time for the impact of long-stored but repressed childhood trauma to intensify. I turn 44 next week.

When we are anxious, our fight or flight system gets activated. Research shows that during fight or flight, our sense of smell increases to better detect danger. Understandably, hyperosmia can lead to a worsening cycle of hyper-vigilance and severe isolation. The same can be said of childhood trauma, having taught survivors that our bodies, other people, and the world are unsafe. Research has also shown that people with severe chemical sensitivity are more likely to have experienced invasive childhood sexual trauma. I most often describe my relationship to this insane sense of smell as feeling continually assaulted and unable to control what penetrates my body’s boundary. In fact, I feel boundary-less.

My body, not my mind, carry the memories of my early trauma, so I can’t say for sure, but it’s natural to speculate that being three years old, in a hospital for three nights completely by myself, post-surgery, with an indwelling catheter in my genitals, and my wrists restrained, would have been a crucible of terror and isolation. I can’t help but notice the symmetry of that early trauma with the fear and isolation this inexplicable smell condition has forced on me.

As I’ve observed my sense of smell grow more acute over the past many months, I’ve watched the anxiety intensify along with it, and it’s clear that my brain is caught in a cycle of stimulus and fear, one amplifying the other, and on they go. It’s like an arms race, and as my sense of smell continues to grow more acute by the day, I’m terrified there’s no ceiling. Though the degree of my fear may be extreme and rooted in trauma, I challenge anyone to live with a bizarre, unrelenting assault on one of your senses and not get conditioned for anxiety. In the continual presence of smells, I feel like a bee who’s been trapped under a drinking glass, darting frantically from one side of the rim to the other, desperate to find the escape hatch.

Despite my effort to the contrary, hopelessness overtakes me regularly, another common tendency for adults who experienced repetitive childhood trauma, without rescue. When it comes in small waves, as I’m walking my dog or standing in the checkout line at Whole Foods, and my eyes start to brim with tears, I do my best to swat it away. But when I’m home alone for long hours at a time, scrolling on Facebook, looking at photos of people getting married, babies being born, trips being taken, lives being lived, and joy being had, then despair often takes over.

In those moments, if the fear of exhausting another doesn’t stop me, as it often does for those of us in the midst of long-term struggles, I’ll text my brother to see if we can Skype. While I cry and tell him that I don’t know how much longer I can endure this, how scared I am that I’m burdening him, or that I’m terrified this madness will never go away, he looks upon me with the most compassionate brown eyes and assures me he’s never going to tire of being there, that he wants to hold a piece of this pain for me. And it works. He holds just enough to lighten the weight so I can ask about his life and talk about other things for a little while, sign off, eat my dinner, watch “The Americans”, brush my teeth, go to bed, and wake up to confront this sensory madness for another day.

A friend recently sent me a text, sharing the specifics of a memory I didn’t remember, about a time I went to a psychic many years ago. “The psychic said you have a strong core, like there’s an iron rod of strength inside you. When you told me she said that, I thought it made great sense, and I knew what she was talking about.”

I’ve transcribed that text and added it to the collection of quotes on the inside of my medicine cabinet, to remind myself that the last twenty years of chronic struggle have revealed that I have the perseverance of a warrior, even when fear and despair obscures the core.

I’ve been in therapy, on and off, since I was first diagnosed with depression in college, but a month ago I started working with a new therapist, via Skype, who practices an emerging form of trauma therapy that’s making big claims to help survivors who haven’t been helped by other therapies. To this new therapist, my sensory acuity and hyper-vigilance, along with my long list of other chronic health issues, aren’t at all surprising, given my history, and the research that now undeniably shows a link between childhood trauma and chronic health issues in adulthood. But she believes that if we can heal the continual lack of safety and abundance of fear and hyper-vigilance I’ve carried since I was a child, my brain and body will hopefully no longer need to enact extreme self-protecting measures like this incredible smell distortion.

Recently, I watched the season 3 finale of Orange is the New Black. In an epic final scene, the female prisoners notice a gaping hole in the prison fence that’s being repaired. On the other side of the fence, down a short wooded hill, there’s a small lake sparkling in the late afternoon sun. One by one, the women spot the once-in-a-prison-sentence opportunity, then run for their lives to get out that fence, and jump into the lake, for a brief, sensual, joyous taste of freedom. I replayed the scene over and over while I wept.

I’m running precipitously low on hope these days, and even in my brighter moments, a full-body layer of despair lies right below my skin’s surface. But I still make my bed each morning, get dressed, and put on my yellow wood hoop earrings, or my black upper arm bracelet that makes me feel badass, even though the strangers I see while walking my dog may be the only people I see that day. Mostly, I’m surviving by borrowing my therapist’s belief and the faith of those who love me, and by trying to trust in my own track record for tenacity. I can see the hole in my fence, but it seems I need more fixing to run free.

7 thoughts on “Hyperosmia: When Odors Rule Your Life

  1. You said it best yourself, Kyle- you have the “perseverance of a warrior, even when fear and despair obscures the core”. Keep fighting, you’re bring awareness to this horrible condition and you’re hopefully on your way to finding a cure for yourself. Your strength and resilience is so admirable and your writing, which is painfully beautiful, is frankly, awesome. Thank you for sharing your honest, vulnerable self and I wish you answers, peace and successful treatment.

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  2. Kyle, I’m glad you are borrowing your therapist’s belief. I had one problem after another, either physical or emotional, until I got some healing psychologically/somatically from preverbal trauma. I had a severe bout of TMJ going on, Tempero-mandibular disfunction, in my early twenties, for example, where it felt like needles were impaling my jaw joint. I saw a jaw specialist who got me hooked on Valium before it was known it was addictive and then had a breakdown in withdrawal after I threw the pills out when a dear friend told me Valium was dangerous. Anyway, you are on the right path and I am hopeful for you. Love, Wendy

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    1. Thanks for your thoughts and hope Wendy. Yes, that is a helpful reminder that you suffered from pain and physical symptoms earlier which got better with healing. Sending you love!

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