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.
Subscribe to:
Post Comments (Atom)
Dear Ms. Nosey,
ReplyDeleteI have often wondered what would happen if your nose was NOT in the forest when someone ate asparagus. Secondly, why would you want to smell ANYTHING after Paris?
The notion that no one knows, or nose, about these things, or isn't saying, is particularly intriguing, but for the same reasons I shan't say why. I wonder if anyone can actually smell themselves anyway. As you are well aware, I sniffed Ima Sumac on my hands for almost two weeks after we embraced in an old theater lobby; to this day I keep smelling her odor and no one will tell me if or not I am making this up. More to swallow.
Yours, Nyzer Glock
Nosey,
ReplyDeleteGet a cat door already.
The M Word
Dear Ms. Nosey,
ReplyDeleteI see your point.
And I think the Good Doctor is a true scientist; watch out for the thermometer though.
Given your interest in, and your described adventures with, books on this very subject, may I suggest you also evaluate and record the various smells of those particular tomes themselves. You might start with Johnny Apple Seed and work your way through the Classics. You can then quite literally compile a Library Of Smells. I think there was only one such, lost when Al-Iskandariyyah (Alexandria) went under, or up. I can't imagine what that must have smelled like.
Best Regards, Nyzer Glock
Dear Ms. Nosey,
ReplyDeleteI see your point.
And I think the Good Doctor is a true scientist; watch out for the thermometer though.
Given your interest in, and your described adventures with, books on this very subject, may I suggest you also evaluate and record the various smells of those particular tomes themselves. You might start with Johnny Apple Seed and work your way through the Classics. You can then quite literally compile a Library Of Smells. I think there was only one such, lost when Al-Iskandariyyah (Alexandria) went under, or up. I can't imagine what that must have smelled like.
Best Regards, Nyzer Glock
Dear Ms. N.,
ReplyDeleteIf you read the two previous missives at the same time, using my deliciously patented apparatus specifically designed for such affairs, the two for one bonus will immediately be evident in the outcome: The Library Of Library Smells.
Again, Nyzer Glock
Dear Mr. Glock,
ReplyDeleteYou grew up on a diet of Borges, didn't you?
Yours,
Nosey
i have phantosmia alerts on my gmail. anytime the word is used i get it in my inbox. i rarely respond to anything. i ate a bar of chocolate last night. i know that there could pay for it later but i still do ate and no problems. so, i'm just sayin there was a french study on it an that was their conclusion and i've noticed that those items can sometimes trigger a reaction..i don't know that i could ever give up chocolate forever.
ReplyDeletei skimmed through your blog. your sister's correct about the tangles wires, although those were not the dr.s exact words.
thing's i've learned about dr.s through the years.
1. THEY ARE HUMAN..and sometime they and us need to be reminded of this point.
2. Never, ever stop asking questions.
3. Do not take their word as the end all be all of answers. seek, seek, seek.
4. most dr.s have no idea what they are doing(ok maybe i'm a little bitter)
even with my pets vets i've realized that dr.s get frustrated when you bring up questions or ideas that they themselves maybe should have thought of and it kinda pisses them off or makes them roll their eyes at you.
i was told my cat had 2 weeks to live as of last sept. i beleive the dr. but pursued other ideas and avenues. i've since changes dr.'s and he is doing great. he has a chronic disease but we've been able ot get him stable, comfortable and happy. My point of all this personal info is believe your gut, if you think a dr.s wasting your time he probably is so leave and find a new one. life is short. you have alot of info at your tips so use it.
Hi Kari,
ReplyDeleteThanks for writing me back. I didn't know gmail could alert me to the use of a word. That's very cool. Dr. Leopold wrote me back and urged me to stay in touch. I like him. And Im cutting out the tannins at your suggestion. I had some chocolate last night at the movies and it suddenly got much more intense.
Good luck with everything. Hugs to your cat.
-Kate
Hello!
DeleteI read with interest your postings and agree with your characterization of the smell - aerosol at times, rotting meat, etc. Sometimes there is a "Mentos Effect" as well, by which I mean a 'cooling' sensation when breathing in. Very weird. I, too, have spoken w/ Dr. Leopold, back in 2005. He's definitely a great guy and very accomplished. With no disrespect intended, his success rate simply wasn't high enough to risk surgery so close to the base of the brain and so I continue to suffer. Below is a synopsis I provided to a group in NYC a while back, when they were looking for volunteers for a phantosmia-related study. I never heard back from them.
Good luck in your search for a solution and thanks for creating this wonderful blog!!!
btw: I've been off Lamictal for over a year now with no apparent changes, negative or positive.
Very best,
Chris
fnamelname@hotmail.com
Background:
1984: (age 22) Minor concussion sustained by a fall while skiing. Fell sideways and banged my head hard against packed snow. Nausea followed, which lasted 15 minutes, a mild headache persisted for three to four hours afterwards. Nothing abnormal after that.
1998: (age 36) Onset of periodic Phantosmia episodes.
2005: (age 43) Experienced two idiopathic peti-mal (absence) seizures: one at work in July 2005, the second (and last) at home in December 2005. The first episode was preceded by roughly eight weeks of near-daily auras of anywhere from two to fifteen minutes’ duration. It’s important to note here that I had no idea at the time what an auras were nor their significance as frequent precursors to seizures. Auras continued up to and including second seizure in December, culminating with a two-day hospital stay where no root cause was ever identified. CAT, EEG and MRI conducted early August 2005 detected no anomalies. It’s now July 2010 and I’ve been on daily 400mg Lamictal regimen since December 2005 with no auras nor seizures.
Present: Shortly after onset of Phantosmia in 1998, the triggers identified were coughing, shouting (calling out across the street to greet a neighbor, etc) and sneezing. While the common denominator here appears to be a sudden increase in pressure within the sinus cavity, accidental and/or intentional introduction of water into the nasal passages/sinus cavity (underwater swimming, saline nasal rinse, etc) is also a precipitor. In rare cases, onset is spontaneous with no apparent triggering event. Vigilant avoidance behavior is currently the only means for minimizing the frequency of these events. In each case, the Phantosmia episode will last the entire day, even if onset occurs early on in the day, as in shortly after rising. Each episode has resolved only after a full night’s sleep. Frequency of occurrence is three to four times per month, sometimes spaced apart as closely as two or three consecutive days.
The smell consistently associated with these triggers is of rotting garbage and the episodes themselves are frequently accompanied with an emotional state characterized by irritability and a sense of depression, given that the day is largely ruined by the temporary loss of the two major sensory inputs of taste and smell and that a singularly successful treatment has yet to be
identified.
I can be contacted at fnamelname@hotmail.com
I started suffering from phantosmia early this year. Initially, the smell of cigarette smoke was faint. Then when it came back the following month, it was with a vengeance. I could not sleep because the smell of smoke was giving me headaches and was drying my mouth. Nasal washes and dabbing tea tree oil provided only temporary relief. I also had a brain MRI which was negative. I tried them all. What we all have in common are allergies, sinus problems, possible depression, and yeast / fungal infections?
ReplyDeleteI did not want to take any more medication since they tend to only do harm, if not now, then eventually.
Something told me to deal with the depression first. I was not clinically depressed since I still functioned well at work.
I decided to try herbal supplements. I was going to take antidepressants only as a last recourse because its habit forming. I bought St. Johns Wort (herbal supplement alternative to antidepressant since it uplifts mood) and garlic supplements. Garlic is the best natural remedy available since it is antimicrobial, antibacterial and antifungal. I took the highest dosage of garlic available (odorless 1000 mg) and the highest dosage of St. Johns Wort (with "hypericin"). I did not notice any change in smell the first 3-4 days, and then the smell started getting fainter and fainter. About a week and a half later, the smell disappeared. It's now been three months and the phantom smell hasn't come back.
Try this over the counter remedy. I know the hellll that you are all going through and I just have to put in my two cents. The combination of St. Johns Wort and garlic helped me. Give it a try!
Dear Cosi1.
DeleteIs the smell still manageable for you? Also, for the St Johns Wort do you take the dosage that it says on bottle only (I have 300 MG to take 3 times per day along with 4 times per day of the Garlic)? Thanks....
Hi Nosey,
ReplyDeleteYou are a terrific writer. When reading your blog, it was as if you were writing my story, line by line. I have been consumed with the effects of phantosmia for nearly a year, and after 'doing it all' as far as doctors and testing, I'm still in the same place. Not one
physician put the 'phantosmia' label on my
symtoms, and like you, the internet became my
source of information.
Thank you so much for sharing your experiences.
This comment has been removed by the author.
Delete