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 significant physical discomfort. 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 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 they contain tiny shards of glass, or 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, though recently my smell 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 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.

32 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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      1. I can also relate, although I must say that I really feel for you as it has hit you a lot harder than me. Thankfully I haven’t reached the level of having to stay home or stop seeing people, but interpersonal relationships are extremely challenging. My poor kid is always hearing that his hands smell, or that he needs to brush his teeth, and my husband rarely comes close anymore because he is aware of how much I can smell…. it is a terribly depressing way to love life. I have moments of anxiety, depression, I also fantasize of having anosmia….. I wish there was more research and I wish I didn’t have to feel crazy half the time!

        Oh, and BTW, my hyperosmia is worst when I’m ovulating, so yay for trying to conceive! (Being sarcastic of course)

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      2. Hi there, I’m so sorry you live with this awful condition! Yes, I’ve wondered how it would work if I had a family and had to contend with everyone else’s smells so I can imagine how hard that must be on your family relationships. Yeah, the lack of research on this condition is astounding and maddening. Just remember when you’re feeling crazy that you’re not and that there are other people out there like me, who are having the same experience. With you in spirit.

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      3. I stumbled on this article and I know exactly what you’re going through. I’ve had this condition for over 20 years. I’ve managed but, like you my world has gotten smaller. I just wanted to let you know that you’re not alone. I feel like I am losing my mind some days but I keep hoping that my body will change and I will get some relief. One day at a time. Wishing you all the best and hoping that you get some relief.

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  3. It really sucks this happened to you. I know a bit about what it might feel like, because I became a super-smeller about 6 months ago. It’s not nearly as bad as yours is, but I can see how it could get that bad.

    I hold to the hormonal theory in my case. I have a prolactinoma (pituitary tumour that secretes prolactin), and it basically gives me a lot of the side effects you’d get from pregnancy or menopause. I have leaky boobs, messed-up periods, drenching night sweats, and now, hyperosmia. Since women often get heightened senses of smell during pregnancy, and excess prolactin makes your body think you’re breastfeeding, I can imagine that hormonal problems are responsible for the super-smelling problem as well.

    It might not be applicable in your case. I’d guess there might be a number of reasons why someone might have an increased sense of smell.

    Although Wendy might have been helped by a psychiatrist, I don’t think it’s helpful to conclude without evidence that an unexplained illness must have arisen from childhood trauma, and that dealing with the trauma would solve the problem. It might, but it could just as easily be a red herring. And psychiatrists give out prescriptions like Valium too – some psychiatric medications can do permanent harm.

    Obviously you’re desperate for solutions, and your situation would definitely contribute to depression and anxiety. The danger, I’ve found, is that doctors who are out of their depth and can’t find the cause of a complicated, probably multifactorial problem, usually try to banish those patients to the black hole of psychiatry, where they can then be gaslighted into believing any physical symptom is a result of mental illness. I think very few people who go for psychiatric help in the hope of solving a mysterious physical ailment actually improve physically. It’s helpful to have a psychiatrist to discuss how the problem is affecting you and maybe get medication for the resulting anxiety/depression, but just because a cause has not been determined doesn’t mean the cause is psychological. Doctors aren’t gods, and they’ve barely scratched the surface of medicine.

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  4. All ur words and thoughts are mine. Two years ago I had an war surgery to cure vertigo. The doctor used Gentsmicin and it caused permanent vestibular imbalance and no cure for the vertigo. It also totally ruined my system where medications that I could take before now cause me severe illness.
    A couple of months later My sensitivity to smells free and grew, primarily with cooking. I get chronically nauseous. I’m going on third year and it just seems to get worse. I cannot find any physician or treatment and I’m in despair as now Every smell causes intense nausea. I don’t know what else to do or how to continue to cope. I can’t believe there’s Nothing to help.

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  5. I was googling hyperosmia when I came upon your blog. Reading it is like you are describing my life. My sense of smell has always been acute, but now it seems on overdrive! Most of my symptoms are very tight lungs, burning in my nose, and tingling/burning lips and tongue. If the odour is very severe I have had my throat feel like it is closing up on me which really makes me anxious as I feel I’m suffocating!
    I have a kitchen gas stove and also have smelled gas and called the repairman who said, “You have a very, very tiny leak in the line – I don’t know how you smelled that!” I am getting to the point where I, too, have to limit going in stores. Travelling is a pain in the butt, or should I say pain in the nose and lungs!!! Last year while driving to Florida we spent two days in Savannah playing tourist. The women’s perfume and men’s aftershave almost drove me crazy. I could not go on group tours, or even sit in the restaurant at the hotel because it seemed everyone used the overly scented shampoo and lotion that the hotel provided. My husband ordered for me and I took my food back to my room. I now take my own pillowcase with me in case they use scented detergents on the linens. I have slept in a sweater rather than pulling up the sheet around myself. I can smell cigarette smoke on someone casually walking toward me, say in an airport, from 10 feet away. I have to use a mask on airplanes because of all the scented products people use.
    Today I took my young grandson to his swimming class and had to sit with my scarf around my face – children with Bounce scented beach towels walking by me, fathers with their aftershave, women with perfume and hair products. Thankfully they do not use chlorine or that would be an additional factor to avoid!
    The other thing that severely affects me is wood smoke. Where I live, there are five homes on our street that burn wood as a supplementary heat source. On really cold days, the smell invades my house and my lungs get so tight my breathing becomes very shallow and quick. I just cannot get a full breath! I have puffers that I use most days in the winter, but breathing should not have to be so difficult, and I should be able to be safe in my own home. I have a hepa air filter machine that does help somewhat. Moving in not an option at this late stage of life.
    I went to the Pulmonology Department at our local Hospital and had testing for Reactive Airway Disease (RAD). The score has to be 21 on their testing to say you have it – my score after two rounds of testing was 19, so the technologist said I was up there on the scoring but it couldn’t officially be put on my health record. RAD is similar to asthma but different. The bronchial tubes are very quick and reactive to any foreign substance, and will swell.
    Over the past three years, I have tried to become scent free in my own and my husband’s products. I use baking soda, vinegar, salt, lemons for cleaning instead of commercial cleaners.
    It certainly is not easy living like this. My doctor thinks it is all in my head. Well, yes, in my nose!

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  6. This was like reading about my own life. I’ve been forced to isolate myself so much due to hyperosmia. The doctors I’ve talked to about it treat me like I’m a crazy lady and offer no help whatsoever. Some days, it’s unbearable.
    Thank you for sharing.

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    1. I’m so sorry you too are living with this brutal condition. You may want to look into something called the Dynamic Neural Retraining System. Though hyperosmia isn’t the same thing as multiple chemical sensitivity, many with MCS have hyperosmia, and some people are being helping by that program. I started it, but then had to pause.

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      1. Hi I have both of these! TERRIBLE….mine started from mold poisining! No I can not stand my home and it came from mold remediation! Not good cannot find help either and drs. say I am crazy too. what a joke, we are not.
        Now they think i have an autoimmune disease….I sweat the toxins nightl awful!
        Help woul be great/ mine started from surgery for tonsilor abcess. TERRIBLE
        pshyc. can not help because mine is from my home. MOLD and chems.

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  7. It was very helpful to read your words describe so much of what is going on inside my head/life and I wish neither of us had to experience this. Think I too have exhausted almost every option I can think of except surgery for a past broken nose to alter my nasal pathway but not sure what exactly that would do if anything or the calderizing…but I know my particular case was worsened by an issue with mold and an unknown allergy to dustmites.
    The ENT ‘s face, an old experienced guy, after he really examined my naval cavity was not one anyone wants to see!
    “It looks like there was a chemical fire inside your naval cavity!” He tried to hep with steriods and antibiotics & antifungals but it didnt seem to help much. Idk.
    Been feeling like I have been or go through periods when my mind is simply overloaded from sensory input. Had been undergoing acupunture to try to get some relief and he put me through an schedule to detox my system especially the liver and kidneys. It did help me some and while receiving these treatments I began to research cleanses & detoxes.
    Came across a book that popped out at me..’The Toxin Solution’ by Dr.Pizzorno. This book is now my new guide to healing & detoxifying my system. On day 8 of a 9 week detox diet that will hopefully cleanse my body of any bad stuff in it it can and I am hoping of course it will take care of this crazy sensitive sense of smell. Think the worse thing that could happen is start eating better and/or adopt a healthier lifestyle.
    Have ate & drank pretty much what I wanted with no health issues except for my heightened sense of smell that I was aware of, lived in cities the last 25 years, been exposed to how many chemicals, various perfumes, mold!…makes sense to me that my body has probably accumulated a lot of bad stuff/toxins over the years and I may be in a toxin overload type of situation.
    Have you heard about or tried this type of thing?
    I also have what looks to be a polyp that appears to be reacting to my environment. It get bigger or smaller/ seems to react to certain stimuli.
    Think a goal is to get healthy, adopt an anti-inflamatory type of diet as well as give my body a less intense detox a few times a year. And live in an environment with clean air & water.
    Good luck!

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  8. So so sorry for your condition …makes me think I’m not alone in this fight!,
    You have extreme symptoms,and you clearly cope with it in a way that excludes you from normal activities….so sorry. I have developed an extreme sensitivity to smoke,barbecues!cooking and perfume etc etc. I agree people think you’re weird when I cover my nose or chew gum …
    I send you my sympathy and hope it runs it’s course and goes…x

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  9. Does anyone know if there’s anything out there which might help with hyperosmia? My wife started getting very sensitive to smells about 10 years ago. It has been getting progressively worse overtime and her hyperosmia is at the peak now. She has seen an allergist, an ENT specialist, a neurologist, but no one has any idea about this problem.

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    1. My problem started last December after coworkers were spraying Lysol Country Fresh in the air in the work area and the bathroom, and one final blow of Scentsy sprayed within 3 feet of my face. I wear a Respro allergy mask with optional chemical filters while I’m at work and if necessary, when I’m out in public. My ENT sent me to a speech therapist to learn to keep my vocal chords from closing after exposure to strong smells (some people think they are having asthma attacks because they can’t breathe, but it may be the vocal chords closing). My rhinologist has me rinsing with Neilmed twice a day and also using Ayr nasal spray twice a day to help moisturize and heal the nerves in my nose. She instructed me to stop all nasal allergy sprays and to use either Claritin or Allegra allergy pills because Zyrtec and a few others are too drying. I seem to be slowly improving. I have had to alter my life to avoid the fragrances and chemicals as much as possible. My home is completely fragrance free except for the exposure I get from the neighbor dryer vents, car air fresheners, and smoke for fires or grills.

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      1. Hi there. Thanks for sharing your experience with hyperosmia on my blog, and what you’re trying for improvement. I am encouraged that you have noticed a least a little improvement. I know you wrote this in Nov ’18 and I’m just now replying! But I’m curious how you’re doing a few months later. Also, I’m curious how old you are? I’m 45 and really wonder if this is a wacky response to perimenopause.

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    2. I developed hyperosmia last December after daily heavy exposure to Lysol Country Fresh, Fabuloso in a Scentsy warmer, and 5 pumps of Scentsy Air Freshener within 3 feet of my face. Unfortunately, my allergist put me on several very drying nasal sprays and allergy pills that my rhinologist believes increased the problem. Apparently there are no safe nasal steroids and they have contributed to this problem in a number of people. My rhinologist took me off all nasal allergy sprays, and switched me to Claritin or Allegra, which are less drying than the other allergy pills. She also has me rinsing my nose with Neilmed twice a day, and using Ayr nasal spray twice a day to help moisturize and heal the damaged nerves in my nose. I have been under this regimen Since September and I seem to be slowly improving. I also wear a Respro Allergy Mask with optional chemical filters so I can go to work and go out in public. I’ve learned that most people don’t wear fragrances and that I can go shopping or out to eat in restaurants if I go during slow periods. I’ve even found a mostly fragrance free gym where I can enjoy a workout. My ENT also sent me to speech therapy to keep my vocal chords from closing on exposure to strong smells. My vocal chords close and block my windpipe (most people think they have asthma, but that may not be the case for people with hyperosmia). This is called vocal chord dysfunction. The ENT, Speech Therapist, and Rhinologist are all confident I will heal. Next stop neurologist and MRI of the brain due to the neurological symptoms I am experiencing (memory problems, muscle t.witching, pain) on exposure to certain fragrances.

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    3. Look up Dr. Eric Berg on you tube- he has some videos on Autoimmune problems and other things that I found interesting. He was suggesting, from my understanding that it could be an adrenal fatigue issue (cortisol triggered). I’m about to start the eating plan that he advises- he has books but the information is all available on you tube for free and in snippets that don’t need lots of focus. It’s a good sign she hasn’t got rid of you – I couldn’t go near my ex-partner anymore. All the best to you both

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  10. I contracted hyperosmia on September 27th of 2018 literally after I woke out of anesthesia from a hysterectomy. It’s now January 13, 2019, and in this punch. Hyperosmia has changed for the worse, my quality of life. I barely have any life whatsoever as far as a social life and I feel sick most of the time, to my stomach. I’ve been researching as much as possible and of course to no avail, there is nothing that can be done to decrease the intensity or to get rid of it completely. I’ve suffered from depression for 20 years and have been on medication for that length of time and now the hyperosmia has crossed me a deeper depression and I have anxiety attacks almost daily. These anxiety attacks cause me to get hysterical crying and I have to take to my bed for the whole day almost everyday. The only time my husband and I go out, and he’s blind so he does not have a separate life from me, we go to doctor appointments regularly and occasionally go out to get something to eat and once in awhile to the supermarket, when I have the energy and feel up to it. The worst orders for me, is being around anything that’s perfumey, including dryer cloths that are perfumed. It seems like I can pick up a scent like a bloodhound, even in my own home on vacation I smell something that turns me off and upsets me terribly. So I run for a peppermint Altoid, which basically masks the older that is upsetting me. Just lie I am now wearing a mask when I walk out the front door or if I have to wash my hands I have to wear a mask because the liquid soap has a scent. I have finally accepted that this is my life, I am going to be 72 and April and I am a very young 71, I must add! I’ve always prided myself I’m looking at least 10 years younger, due to excellent family genetics, but this horrendous condition is aging me quickly. I cry a great deal and I have dark circles under my eyes now. The moment I smell perfume I get an anxiety attack and I run screaming and crying and I also suffer from migraine headaches which could have tricking hyperosmia I had the migraines before I had the hyperosmia because I know you can get migraines from having hyperosmia. It didn’t work that way for me it was the other way around. But it also I’m taking many prescription drugs so who knows what caused it is just unbelievable to me that there is no cure or any way to be rid of it. I just can’t believe I have to live with this for the rest of my life. But thank God it started now and not years and years ago. The saddest thing is that I have no energy and feel terribly isolated like I’m in quarantine. I would do anything to get rid of this and I would prefer to have lost my sense of smell and taste if I had a choice. 21 reads this, and has hyperosmia I know what you’re going through to me on a scale of 1 to 10 this is an 11 for me I can’t imagine this getting worse it’s destroyed my life and I barely ever smile anymore. I pretty much have nothing to be happy about I swear that’s how I feel. Good luck to everyone out there reading this. Good night.

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  11. I have been a prisoner to hyperosmia for 3 years now. It’s stolen my life. I have seen specialists, had scans, tried healing therapies, tried rife machines remotely. I gave up caffeine. I took up zinc and thiamin and niacin and made changes to eating because I couldn’t cope with more than one food smell. I gave up a social life. I gave up my boyfriend. I gave up dying my hair, using nail varnish, makeup, detergent, scented anything except for doterra onguard which helped give me something to focus on. Like all of you many people around me called me crazy and didn’t understand. I had an understanding doctor and when I eventually saw the ENT he ruled out tumor and MS but said no cure. He said that it could have been caused by a virus (I got pleurisy 7 months after I started tasted washingup liquid and dog hair in my mouth).
    I recently came across Dr. Eric. Berg on You Tube. Please check him out if you are reading this. From what he says anyone dealing with autoimmune issues (like allergic responses to smells etc) have adrenal issues. As women when we approach menopause the Adrenal glands take over the job of the ovaries. Considering the amount of stress that some of us have experienced in life when this happens the adrenals are already exhausted. He’s suggesting sugar free diet with natural unprocessed foods and 7-10 cups of leafy veggies daily (healthy keto) – this would balance cortisol and help the body heal in theory. lots of people report success with other issues and I’m going to try this.
    I wish all of you healing. I wish all of you peace. Please hang in there-

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    1. Hi Elenya. Thanks for commenting on my blog about your hyperosmia. So I’m curious if you’ve been having any luck with the diet you were planning to follow, in terms of your sense of smell regulating? Thanks! Kyle

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      1. Hi Kyle,
        Hope you are well.
        I’m so glad you asked! It reminds me of how much has improved! I’ve been sugar free and following Dr Berg’s healthy keto for just over a month now and my brain is working so much better. I’ve had less migraines and my sense of smell has become less intense in relation to some smells. My eyes aren’t as light sensitive and don’t burn around smells to the degree they used to. I’m still reacting in my stomach and head to the stronger chemicals, perfumes and the very smelly shampoos but not so much some of the everyday smells. I’ve been able to wash dishes in the chemical liquid that my family use! I’ve been able to have conversations lasting more than a few minutes in person, I’ve been able to stroke a cat and witness a lamb being born and was able to hug a family friend (who wears potent coconut based perfume) after she suffered a loss- all without throwing up!
        I have more hope now than in the last 3 years.
        The brain fog and body pain I thought was just going to be with me forever has gone. Before I felt like I had a chemical hangover every day that just didn’t lift now I’m able to focus a bit more every day. I’ve actually been able to read a little without the smell of the pages turning my stomach.
        I’m really happy that I have tried this- I didn’t really think it would do much but every day I’m feeling a bit better. Please anyone who is reading this think about trying this for yourself- it could also improve things for you. (If you have a sweet tooth there are plenty of alternative sweetners).
        By the way- in the research I did I discovered from Dr. Berg that sugar blocks absorption of Vitamin B4. I’d never even heard of B4 before but I’m wondering if perhaps some of our symptoms are linked to this?
        If anyone is going to try this please do the research on Dr. Berg’s you-tube channel or website and make sure you follow the recommendations. (There are other versions of the ‘keto’ diet but they aren’t as focused on healthy nutrition).
        All the best to you Kyle and everyone else. I wish you freedom from the hyperosmia.

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      2. Hi Elenya, I’m thrilled to hear of your improvements! That’s awesome news. And inspiring. So how did you first hear about Dr Berg? And does no sugar also mean no fruit? (Fruit is the only sugar I eat. I’ve been sugar-free (other than the fruit) for 12 years!) Thanks for taking the time to share your improvements. I’m so happy for you. I hope the trend continues on and on!

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      3. Hi GBC
        I came across him on YouTube- I was looking up stuff about the liver and allergies (I have alpha1 anti-trypsin deficiency).
        From my understanding insulin resistance is linked to many health issues. The healthy keto that Dr. Berg suggests following is low carb, high fat (good fats!) and moderate protein. No sugar and 7-10 cups of mostly green veggies daily. The only fruits that are ok on the eating plan are berries- everything else will spike your insulin too much. Initially you would avoid fruits and foods that are higher carbs and perhaps reincorporate when you’ve achieved your goal of better health.
        He also suggests intermittent fasting as a way of helping the body heal- some of the people who comment on his videos seem to be getting good results from just doing that without the healthy keto eating plan. Initially if you eat 3 meals a day with snacks between meals you would simply be going to 3 meals and eat the snacks as part of the meal.
        He has over 2000 informative videos on Youtube. I was able to listen to some and grasp what he was saying even when my brainfog was crazy.
        This is his YouTube channel
        https://www.youtube.com/user/drericberg123
        This is his Website
        https://www.drberg.com/

        All the best to you and wow 12 years sugar free- that’s absolutely awesome! I hope I’ll be saying the same one day!
        Take care, Elenya 🙂

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    2. sounds alot like me. it came from after having a peritonsilar abcess surgery and mold in my home. Awful age 63 been 3 years now.
      Sad
      awful…
      No one has checked adrenal glands.
      Sever allergies and the smell disorder is awful.
      Platic makes my lip swell, nose and throat burn when in a mold area and when using cleaning products. Carpeting bugs me too.
      terrrible
      No one can help me. Neurologist suggested a dr that is a chiropractor.
      yes stay away from sugar…hard for me to do, everything turns to sugar.
      I had to retire early…I am a dental hygienist. Chems….chems….chems.

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  12. I am grateful to have found this site. I also suffer asthmatic reactions to scents which are worsening with age (55). I believe my problem could be menopause related, or a response to allergy shots.

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