Me and My Anosmia: Living without Smelling
By Dan Brooks
My olfactory senses have never been great. The running joke in our house is that when people talk about hints of spices in the nose of a wine, or a particular herb in a sauce, I shrug my shoulders and say, “I don’t smell too good.”
But a couple years ago it occurred to me one day, after my wife Rebecca had commented on something particularly offensive in the air, that I couldn’t smell anything at all. Nothing. It struck me that I couldn’t even say how long this had been going on. My nose had been so understimulated over time that I didn’t even notice when it blanked out completely.
Nor did I have much of an idea of what had caused this sensory failure. It was true that earlier in the year I had a tumor on my pituitary gland removed and sucked out through my nose, and had contracted sepsis and bacterial meningitis shortly thereafter (after being discharged from the hospital while I was still dripping cerebral spinal fluid). But I had been bothered by a bronchial/sinus condition for months before that. The inside of my head didn’t hurt at all, but I continually felt hunks of phlegm stuck somewhere way up high in my nasal cavity. My voice was also raspy almost all the time, and I must have irritated people around me to no end by frequently clearing my throat—I know how much I irritated myself with it.
It was this earlier condition, in fact, which led to the discovery of my tumor. My primary care provider had me try allergy medications, but eventually sent me to an ears, nose, and throat specialist, who also couldn’t find anything really wrong with me, but ordered a CT scan to be thorough, and then an MRI when the scan turned up something suspicious. But even before the surgery to remove the tumor, the ENT and my neurosurgeon told me that it was not the cause of the other symptoms, and so they did not go away after the pituitary adenoma.
I had several follow up appointments after my recovery, and I was given steroids and more allergy medications, was tested for airborne allergies (I was mildly allergic to a bunch of things, but not enough for that to be the root cause of my symptoms), and I started a nasal rinse regimen once or twice a day which did provide some temporary relief of the sinus congestion (I was sometimes shocked at just how much snot I could bring up from deep inside my head when I did this). At each visit my ENT would give me an endoscopic treatment, providing a running commentary on what was going on inside my head.
“Icky, snotty inflammation,” he winced, scrunching up his face.
When I told him I had also lost my sense of smell, he was very sympathetic, but didn’t have any definite answers as to the cause, and said while sometimes it comes back, the anosmia is sometimes permanent. I had already heard this from my primary care.
I go back and forth about how I feel about this loss—on the one hand, it’s not like losing your sight or hearing, or a part of your body. But on the other, there are so many smells we encounter in life that make life what it is—smells of nature, smells of cooking—how does one just do without it? And so much of what we taste is part of what we smell. Not surprisingly, I haven’t had a very developed sense of taste over the years either, but after losing my ability to smell tasting was also diminished, and eating became less interesting. I’ve read about people with this condition who were cast into deep depression by it. One man had the impressive ability to taste food and detail every ingredient contained in it but suddenly lost his ability to smell after suffering head trauma in a car accident. Ironically, in the years after the accident the man with such gourmet sensitivity got sick from eating rotten food he couldn’t smell. Another woman had blood tests, several surgeries, and other treatments to try to correct her smelling problem, and none of it worked. Then she temporarily recovered her olfactory sense after heavy doses of prednisone, an anti-inflammatory steroid. When she was first able to smell again after this treatment she would break down in tears at the smell of the simplest of foods like a banana or a salad, or the scent of her husband’s skin and clothes. But she lost her smell again when she discontinued the prednisone (it can have unhealthy side effects if overused). In her despair she had new surgeries and eventually went back on the steroid, hoping for another recovery.
But more than the emotional turmoil it causes, anosmia is also a real disability—and those who suffer from it are at risk because they can’t smell something burning, or a gas leak or other toxic threat.
Because my smelling powers have always been limited I’ve tried not to feel too sorry for myself, but it is demoralizing. I’ve become quite preoccupied with both trying to figure out what caused my condition and how it can possibly be cured, or at least improved.
Regarding the former, the neurosurgery or the meningitis infection (or both together) seem likely. But then I was experiencing that bronchial/sinus condition with the excessive inflammation even before the surgery, so that may have had its effect on the olfactory senses as well. My ENT, who by now was very familiar with the inside of my head, had ruled out nasal polyps or other physical obstructions that could cause the condition, and he had already corrected a deviated septum during my surgery. He kept mentioning the inflammation—but inflammation caused by what? I asked him if it could have been caused by overuse of nasal sprays for sinus congestion. When I was young I rather recklessly overused Neo-Synephrine for a stuffy nose, despite the warning labels that said not to use the spray more than a few days in a row. I thought maybe I could have ruined my mucus membranes. He didn’t think so.
I asked whether, since inflammation seemed to be at the root of the problem, adopting an anti-inflammation diet or reducing alcohol intake would likely improve my sinus and bronchial symptoms, which might address the anosmia. Possibly, he said, but largely his suggestions were additional pharmaceuticals or, if nothing else worked, possible surgery. Not wanting to go down that path, I decided on doing research on alternative solutions.
When discussing diet options, he had mentioned Dr. Michael Greger’s book, How Not to Die, which makes the rather large claim that most of life’s health issues can be resolved by adopting a plant-based diet and regular exercise. My wife had heard about this book as well, and was interested because she was already removing meat almost entirely from her diet, and was ready to take it to the next level. A few months later we embarked on a vegetarian adventure together for four weeks. This really convinced Becky to keep up with a meatless diet, but it did not improve my overall symptoms or my sense of smell (although I did drop about eight pounds by the end of the month).
Then I came across a brief reference to acupuncture as a treatment for anosmia. I mentioned this to Becky, who had run a course of acupuncture treatments for a different ailment a few years before. She then reminded me of a co-worker of ours many years ago who regained her sense of smell after only one acupuncture treatment—immediately smelling the alcohol used to wipe up small drops of blood from the needle pricks.
So I decided to try it, and made an appointment with Craig, the acupuncturist she had seen before. When I told him I hoped the treatment would give me my smell back, he was quick to say, “I’ve seen it happen.”
He was careful, though, not to get my hopes up, saying cases are all different, and it’s so difficult to know what causes the condition. He asked if I tried smelling different things to see if certain smells that did succeed in getting through. I said no—by this time I’d become frustrated when Becky would keep at it, saying, “Try this. How about this?” I said I did often have a sensation in my nose when I could sense a change in moisture in the air. He suggested I might try essential oils.
I had my first treatment, which I found very relaxing, but no nasal fireworks. I did try the essential oils test, though, and was encouraged by a vague but distinct sense high up in my nose when I sniffed the eucalyptus bottle. The next day I tried a different test. I had bought my wife four different citrus essential oils as a gift (I heard her tell some family members at Christmas that she liked the citrus scents best). I knew what the scents were: lemon, grapefruit, mandarin orange, and lime. Without looking at the labels, I sniffed the first three and surprisingly was able to identify two of those correctly. I remember distinctly being able to make out the orange of the first one.
Now this was very exciting, but it is also the case that after losing my sense of smell I did get an occasional whiff of something seemingly out of the blue, which I could never explain. Early on we were leaving the parking lot of the graduation ceremony for the college where Becky and I both teach on a warm spring day. The windows were down to let in air after the car had been sitting in the sun, when suddenly I smelled cigar smoke. I was baffled, but sure enough, after another few seconds, a young man in the car ahead of us, obviously a celebrating graduate, stuck his arm out the window with the cigar between his fingers. I thought this was particularly promising, as I’ve read that sometimes people with anosmia think they smell something when they see an object associated with a familiar smell, but in reality are probably remembering that smell (smell, I’ve learned, is closely linked with memory). In this instance, however, there was no visual cue to make me think of cigar smoke. I was hopeful after this event, but my condition didn’t improve. When I did catch a whiff of something (or thought I did), it was always fleeting; it didn’t happen very often either.
After this first acupuncture treatment, however, I began to have other encouraging episodes in which a smell could be sustained inside my nostrils. I was making a vegetarian tikka masala a few days later, and combined several spices to be added to the sauce—cumin, coriander, turmeric, and cardamom—but when I scooped out a half a teaspoon of cinnamon, I could smell it loud and clear. Wow—what a smell! It felt strange that I couldn’t smell any of the others, but there’s something about the smell of cinnamon, especially when not having experienced it in a long time! I went back to smell it again several times after dinner, and it was still coming through as clear as an olfactory bell.
I think it was the very next day when we were sitting down to dinner and Becky decided to light a candle.
“Is that a scented candle?” I asked.
“Is it vanilla?”
“I think so.” We looked at the label on the bottom, but it didn’t say. Still the smell was pretty unmistakable. It didn’t last very long, but it was there. I think the surprise of these occasions made it particularly satisfying, and now that they happened more frequently I became more hopeful.
I gave Craig a weekly report, and he seemed optimistic. He said that in his experience the smells didn’t come flooding back all at once, so this was an encouraging pattern. The next week I reported that one night I smelled my steak cooking in our cast iron skillet for the first time, and that a few days later I could smell a hamburger and onions in the same skillet—and I could distinguish one smell from the other! Another day I could smell the all-purpose cleaner I used to scrub the toilet, and the tub and tile cleaner I used on the shower—the latter being, as I remembered, a very subtle, non-toxic smell.
I found it exciting that many of these moments of smelling came during cooking, as the inability to smell food and drink is what I most dreaded for my future when I first developed my anosmia. So I considered it quite a breakthrough shortly after this when I was making a pot of lentil soup for a close friend of ours who had just undergone knee replacement surgery and the unmistakable aroma of this dish began to make its way through my nostrils. And then, on the way to deliver the soup to her house, I stopped at a bakery to pick up some rolls, and walking in the door the words were out of my mouth before I realized what I was saying: “Wow, it smells good in here!” And it did—it smelled like a bakery, with fresh-baked bread! With both the soup and the bakery, moreover, it was not just a momentary whiff, but a sustained aroma over time that didn’t immediately fade away.
So, am I cured? Not exactly. While the increasing number of smelling episodes was extremely encouraging, I still spent most of my time not smelling anything—I mean, aren’t we normally picking up hundreds of smells over the course of a day, from garbage in the kitchen to gasoline in the car, to grass, overturned earth, and rain on the streets outside? I began to think I could be generally satisfied if I could at least continue to experience these momentary smelling events for the rest of my life, but I knew I was missing a lot around me. It also surprised me some strong and unmistakable smells that you would think would be the first to return drew a blank for me: bleach, for example, or flowers, and especially those it was even rather nice not to be able to smell, like garbage.
I seem to have reached a plateau with my acupuncture treatment; I haven’t had any new smelling adventures in a couple weeks. It’s also an expense that my health insurance doesn’t cover, so I don’t know at this point how long I will keep it up—it may have helped to open up my olfactory sensibility, but may not improve the condition further, so I might stop for a while and see what happens.
I’ve also started a smell retraining treatment with essential oils that repeated studies have shown to improve anosmia in around 30% of participants. I can smell most of the oils at least faintly, so I remain hopeful, but the treatment runs for 12 weeks, so I may not know anything soon.
I believe, though, that the experiments with different treatments and the episodes of even vague or fleeting moments of smelling has kept me from the kind of depression I’ve read about in other sufferers. The excitement of a sudden return of a familiar aroma has been surprisingly satisfying, and I think it will help me not only to endure the condition but also to hope for even greater improvement.