I remember smell

It's been such a long time since I posted about phantosmia, and the reason is I haven't had it for a long time now, except very occasionally, and always after some indulgence that I regretted, like eating a ton of chocolate, or drinking red wine. I overcame phantosmia with the help of an acupuncturist I visited in Mill Valley, California. I went to her when the smells that haunted me had became so intrusive I was in despair. Any passing human being smelled like rotten meat. It was as if I were surrounded by the dead. Sometimes the decaying flesh smell alternated with one of rotten fruit, sticky and sickeningly sweet, cloying and insufferable. My acupuncturist was fascinated by the condition, never having treated it before. We talked about many things - childhood illnesses, memories of scents, injuries real or imagined, foods and drinks, habits, health - and then she distributed her magical needles all over me, with many in my head and at my nose. I lay there in her incensed room, listening to an Indian raga, and drifted along, thinking about things. I remembered the link to roses - how I had unexpectedly smelled roses, like a moment of grace, at random periods in my life. I told her about this, and she commented that phantosmia is clearly something I've always had, more or less latently, but that when the subject was roses, why complain? I had three sessions with her, and, like a miracle, the odious odors disappeared.

On the drive in on the third visit, with my symptoms all but obliterated, in that synchronistic way that still surprises, I heard a woman being interviewed on the radio about a book she had just written about phantosmia. I no longer have its title, and in fact, I wasn't tempted to read it. Because this woman determined, with the help of her western-minded, medication-oriented doctor, that phantosmia was a condition brought about by reliance on non-western homeopathies, and that only western medicine could cure it. Since this was the exact opposite of my experience, I wondered at how drastically different human experiences are, and the insights we derive from those experiences. You could say that everything is subjective, and that each of us needs to find the path to our wellness that corresponds to our personal belief system.

In any case, either my belief or my acupuncturist's intuition or both abolished my phantosmia. I remained symptom-free for a long, long time - maybe as long as a year the first time. When it returned, it was changed, less intrusive, more subtle, and only occasional. Now I smelled frying bacon, or rich dark pipe tobacco, or a flashing, piercing perfume, a little too bright, or a cantaloup that was just going off. I returned to my acupuncturist and again she eradicated the smells. But gradually, over time, I realized that I had lost nearly my entire sense of smell, and can only occasionally smell a flower or a meal. And this in fact is what the kindly doctor on the web had predicted - that in most cases, phantosmia signals the onset of the loss of the sense of smell.

In the time since, I've realized how often people will bring something up close to your nose and ask you to smell it. People love smells. I've noticed how the sense of taste is not, as everyone always assumes, destroyed by losing the sense of smell. They're separate senses - each is one of the five - and food still tastes good even though I can't smell it. I'm bereft of the smell of roses, which grow profusely where I'm currently living, and this is one of the greatest losses. I'm thinking of returning to my acupuncturist, and suggesting to her, simply by way of experiment, that we try to introduce a scent or two - say, the David Austen cressida rose, or freshly baked sourdough rye bread - and see if we can implant them. Why not?

If you are reading this and still tormented by phantosmia, write to me. I'll give you my acupuncturist's contact information. If you're far away from Mill Vally, California, you can write to her, or you might ask your acupuncturist to write to her or call her, and find out what she did.

Friends, Family, and Strangers

So far, I haven't publicized my blog address, just sent it to a friend and to my sister Meg. Both have managed to post comments, both resolutely determined to toy with me. Naturally I'll have the last word.

Meanwhile, a third person responded, God only knows how she came across me (and part of me can't help thinking she's a figment of someone's imagination, maybe mine). She has phantosmia too, and she had also found Dr. Leopold through her web research, but first she had to jump through the hoops of doctors who found her complaint trivial and dismissible. That's exactly why I have no interest in going to my doctor. That, and the fact that she'll remind me that my cholesterol is up, and what about that sigmoidoscopy I owe her? My respondent tells me that Dr. Leopold was sympathetic, helpful, and great, and I've found him to be the same. After I answered the questions he asked me, he surmised that I've experienced a loss of my ability to smell, and that, it being in the early stages, more changes are bound to come. He asks that I see a doctor if it continues for some time, and today he wrote again asking me to stay in touch. One in a million, I think.

My blog reader, Kari, urged me to stay away from things like chocolate, tobacco, and red wine—things with tannins. So there is another connection to explore. Linking "tannins" with "phantosmia" yields a blog where someone who suffered a head injury experiences a distorted sense of smell alternately with a pervasively horrible smell. She believes that alpha lipoic acid, which she's been taking for about a year, has helped her regain her normal sense of smell for most things. In her latest posting she was celebrating enjoying strawberries again, now that they didn't smell like exhaust.

I'm in with a strange crowd.

Into the world

Last week in my reading on the web I came across an article by Donald A. Leopold, in the Department of Otolaryngology, Head and Neck Surgery, University of Nebraska Medical Center in Omaha. His paper is called "Distortion of Olfactory Perception: Diagnosis and Treatment." I emailed him and asked if he knew of any connection between phantosmia and Effexor therapy, because my first guess was that the two were related. He has just written back, lo and behold, and said,
"I have not heard of a phantosmia occurring after Effexor therapy. It can occur spontaneously. I have a few questions:

Please give a name to describe the smell.
When the smell is present, please block R, L, both nostrils to determine whether this changes/eliminates the smell.
Is your regular sense of smell intact in each nostril?
What is your age?
Have you had a CT or MRI scan since this started?
How long has it been since the bad smell first started?
What starts the smell?
What stops the smell?"

Needless to say, I'm delighted by his willingness to respond and his interest, and at the same time, in a slightly paranoid mood, I fear that he has responded because of the connection between brain tumors and this condition. And yet there are so many thousands of people who experience this, it seems a very slim chance that most of them have brain tumors. And aren't brain tumors one of those things that we imagine are going to afflict us when we're feeling sorry for ourselves or something? They are after all quite rare. Although I had a friend who had one, a curator of history at the Oakland Museum, Carey Caldwell. It hit her suddenly. She was upstairs in her study, at her home, on the eve of, I think, her 40th birthday, and she saw prisms dancing on her walls. She thought the neighbor kids were playing with prisms outside, shining their rainbows up onto her walls, as illogical as this seems in retrospect. She headed downstairs to talk to them, nice kids, and noticed more prisms on the stairwell walls. She opened her front door and collapsed - it was that fast. If she hadn't so kindly thought that the kids were sending her rainbows, she would have collapsed all alone, out of sight. But as it was, her neighbor saw her and whisked her off to the emergency room. In the many months that followed she had surgery to remove a large portion of it, then many visits to USF Medical Center for radiation treatments. A fascinating person - an Anglo woman who spent her life studying Native American culture and was as silent and self-enclosed as any Native American one might meet. I remember her telling me how reassured she was when she saw a Kachina doll on her doctor's bookshelf and learned that he was Native American. It reassured her. I lost touch with her long ago. I hope she's okay.

So I'll write back to Dr. Leopold and answer his questions. He promises to respond when he hears from me. Meanwhile, I continue to be buffeted about by this phenomenon, not upset particularly, but annoyed and often surprised. I was at work all morning yesterday without the scent, then I left and drove to my chiropractor's around 11:30. Just as I pulled into his parking lot, I breathed in with no scent, breathed out, and, with the very next in-breath, there it was again, by now very familiar and unwelcome, but bearable in the way something familiar can become when there is no pain in involved.

I've just looked for The Empire of Scent on my bookshelves, and it's not there, which means I have probably loaned it to someone and will have to reorder it if I want to read it. Now I've checked on Amazon, and its real title is The Emperor of Scent: A True Story of Perfume and Obsession, by Chandler Burr. It's a fascinating book, it reads like a mystery, and I'll certainly read it again.

The on and off switch has a mind of its own

January 9

I had most of a day of relief - the smell vanished. I inhaled deeply all day, marveling at how wonderful a source of happiness such a simple thing as smelling fresh air is. Then of course it came back, disappointingly, towards the end of my work day. Driving home, along the quiet sweeping road from Rodeo Beach in the Marin Headlands, keeping an eye out for quail, deer, and the occasional coyote, I figured I might try to redefine the scent mentally, associate it with more welcome scents and train myself to think of it that way. So, as I said, it's made up of an acrid tone, an indefinable medicinal scent, an indistinct, aerosol-like scent, and a tinge of unpleasant sweetness. For the acrid scent I mentally substituted hickory charcoal embers, still glowing. For the medicinal scent I thought of a pine forest in springtime instead of a hospital room. For the aerosol scent I imagined a cooking spray flavored with virgin olive oil. And for the icky sweet smell, I remembered a perfume I loved, Oscar de la Renta, in the days when I still wore perfume. I became a perfumed woman cooking with olive oil over a hickory flame outdoors in a pine forest. Not so bad.

But still, it's unsettling to be compromised at a scent level. As I drove I started thinking about scents in my life, and suddenly I remembered a wonderful phenomenon that occurred to me a number of times over a period of years. I could be standing in a concrete parking lot surrounded with nothing but cars, or driving down highway 5 with only empty plains on either side, or sitting by the salty ocean, and suddenly I would be engulfed by the smell of roses. It would be so strong that I would instinctively look around, as though I might find an acre of rose garden thriving near the surf at Keyhoe Beach or along the edge of the feed lots at Harris Ranch. It made me happy, and I felt privileged, as though singled out for an unearned moment of grace. It was marvelous. I also thought about my cat Buster, who always smells delicious to me (until now, when he smells only like It, the smell). I pick him up from his walk outside, and he usually smells like dinner rolls fresh from the oven, or really good butter cookies. Sometimes he smells like sage or thyme, and sometimes like tobacco, prompting me to imagine that he probably has (as, I suspect, all indoor/outdoor cats do) about 12 other homes where they love him and cuddle him, and where he sleeps in gardens or on other feathery beds. Couldn't all these illogical scent experiences belong in some respect to the same condition? Only the scents in the past were all welcome, even magical, whereas this scent is simply annoying.

It's gone again today, after having morphed last night, while I was browsing at Green Apple Books, into something akin to an overripe cantaloupe, then the faint smell of fresh sawdust, and then just dusty air. Who knows what it'll be tomorrow.

What's that smell?

January 7, 2009
The oddest thing has happened to me. Several months ago, I began perceiving a smell that I couldn't trace. At first it was just an occasional scent wafting by. Then it grew more pronounced, and at the same time more consistent. My wonder about it was idle at first. Was it my shampoo? Mascara? Detergent? So I changed all these things and everything else I could think of, and still it remained. Was it emanating from me, from my own skin? It didn't seem to be. It was just...there. Or everywhere. Or, nowhere. I couldn't figure it out and I couldn't identify it. But slowly, I realized something was just Not Right.

But what? I looked back over the month that had passed while this odd condition took hold in my daily waking life. What had changed? I had gone to Paris - wonderful, beautiful, dazzling, seductive, ever constant and never the same Paris, Paris of the wide skies full of October clouds. I had had an artificial tooth implanted after the implantation of artificial bone many months before. And I had gradually diminished my use of the anti-depressant Effexor (venlafaxine) over the preceding three months, until I had completely stopped taking it. Other than that, everything was the same. The same leaves fell onto my patio from the oak and the laurel trees. My cat continued to claw on the glass door to be let out. No, in. No, I meant out. No, on second thought, in. The deer still visited the yard on a regular rotation, coming along as soon as any new shoots had grown on the shrubs they had munched down days before. The temperature fluctated but always within the coastal California range. My food was the same, as were my eating habits and my habits in general. But now each moment was accompanied by this oddly invasive, unignorable smell. Imagine not wanting to take a breath. It's sort of the opposite of being asthmatic, but far less life-disrupting. Just weird, and distracting. And it wouldn't let up or go away.

So I began searching around on the web, and my first discovery was the enchanting name of this phenomenon: phantosmia. A phantom smell. Like a phantom limb. One senses it with all the weight of reality, and yet, it's not really there at all. My friends immediately became jealous and wanted some odd condition of their own, even though they realized they would never find one with such an amusing and evocative name. I satiated myself on medical reports on the condition—most rather alarmingly describe an odor that is so intense that it makes people gag, or prevents them from eating. Many phantosmia sufferers experience the smell as rancid meat, and are described as "going to great lengths to avoid breathing through the nose." Ye gods.

It seemed time to start eliminating the possiblities and trying to find the source of this strangeness that I had never even heard of before in my life. I paired "phantosmia" and "venlafaxine" and read for hours through heartbreaking postings about the dangers, drawbacks, and nightmarish side effects of venlafaxine, all of which I had thankfully avoided. Among the hundreds of posters, only one lonesome woman plaintively asked if anyone else had had the side effect of an odd, unpleasant, persistent smell while taking the drug. If I were smarter I would have figured out how to talk with her, but I couldn't, and anyway, my condition began after I quit Effexor. Next, I narrowed the focus onto "phantosmia treatment" alone, and spent another bunch of hours learning that no one knows what causes it and there is no cure, although it can be alleviated by snorting saline solution with one's head bent over and down - what one doctor called the "Mecca" position, in a random intercultural note. It's often brought on by a sinus infection or a head trauma, although sometimes it indicates a brain tumor. And in most cases it goes away after a few months or years, while in some cases sufferers become so overwhelmed with it that they commit suicide.

By this time, the holidays had arrived and I drove from my home in Marin County up 80 to 5 to Weed, California, then northeast onto 97, a rigidly straight lumber transport road, to La Pine, Oregon, then out further east on a beautiful, lonely highway to Ft. Rock, where my sister Meg lives with her husband Dave on a ranch in the middle of stunning nowhere. I spent Christmas there with them and their grown kids, learning from my nephew Justin what it was like being an American soldier in Iraq ("Put your water bottle in a wet sock so it will wick the heat from the bottle as it dries and cool the water enough that you can slake your ferocious thirst."). The temperature was in the minuses, and we mostly stayed indoors, except for modest outings to photograph The Rock from different angles.

Meg spends hours on the web trying to figure out what's wrong with Dave, who is plagued by a condition extremely close to Parkinson's but without any helpful response to treatment for Parkinson's. She has a curious, practical mind, and she loves a problem. Her response to mine was that there must be some tangled wiring in my nose, or in my brain itself, that causes it to misdirect molecules. Or something equally fanciful and interesting. I immediately thought of the fabulous book I had read a year or so ago, The Empire of Scent, which explores the intricacies of how the nose performs its marvelous smelling task. Someday, I may be writing to that author, I thought, but I hope not. I just want this to go away.

I returned from vacation and continued to explore and search and send queries. Then I talked to my friend Greg, who, I think, found my news a welcome distraction, since he had just complained to me that everyone he sees keeps talking about the same old problems. You know how that is. This, at least, was a new problem, never before known, never discussed ad nauseum. Greg suggested I write about this, and hence this blog.

In case you're wondering what I smell, it's acrid, medicinal, rather aerosol-like in the higher register, and slightly sweet. After two ill-advised glasses of white wine the other night it became unbearably sweet. What has eventually come to light is that anything that has a fairly subtle and benign odor smells to me like this smell instead. Anything with a nice robust odor breaks through this odor and triumphs, thank god, although after a few seconds it insinuates itself as a secondary scent.

My nephew Justin told me a few more things about Iraq, casually, in an untraumatized way that suggests he might have come back from his tour of duty not much the worse for wear, although I doubt he can find any pleasure in a hot, sandy, beach location anywhere in the world. Sand is the enemy. Sand and heat. He said that the worst thing is the chin strap on the helmet, which soldiers routinely unstrap. But they get reprimanded for that from superior officers, so Justin finally tore off the fastening mechanism, knowing it would take months, if not years, to replace it through the army's snail-paced requisition process. He also said they tore off the canvas doors of their Jeeps - canvas - to let in a little breeze as they drove on patrol. Patrol in non-urban locations, by the way, is deadly dull, and soldiers took to aiming their tires at random tin cans or plastic bottles to crush them, the way you and I might kick a stone for awhile on a walking path. The Iraqi insurgents noticed this of course, and that's why they took to planting home made explosive devised in this debris.

So my little problem doesn't have much weight in the scheme of things. But nonetheless, it's here, and I may as well occupy myself investigating it. More to follow.