"You should have it back in a few days
", I am told by my primary care physician whose office I am sitting in a few days after recovering (sort of) from a particularly bad bout with flu. It has been a couple of weeks since I completely lost my sense of smell. The sensation is not completely new to me - in the past I had quite a few colds which resulted in a very stuffy nose and inability to smell anything for a few days. But my sense of smell always returned fairly soon. This time it feels different, but I am not exactly sure how or why. I have not been able to smell anything at all for almost 2 weeks, and it does not feel "normal". But presumably the doctor knows better, so I wait. And wait.
Another week passes, and … nothing. The doctor tells me that if my sense of smell does not come back in a few more days, I should make an appointment with a specialist. It takes another week to get the appointment. So here I am, at the ENT office in Philadelphia's Jefferson Hospital 4 weeks after I completely lost all sense of smell. And I am now being told that I should have come sooner since I may have missed the "window of opportunity", when a course of prednisone may have worked more effectively.
The ENT seems unfazed by my distress about the fact that I can't smell anything at all. He is nice enough, but tells me that he sees so many people with this condition every year (“a couple of hundred patients per season” as he puts it, and makes it sound like it’s not really such a big deal). Could some nasal sprays I used for stuffy nose and allergies have caused this? “Impossible”, he says. Do you think acupuncture could help me? (I just read an article about the use of acupuncture for anosmia). ”Nonsense”. What can I do to get my sense of smell back? “Hard to say, everyone is different. Based on statistics you have perhaps a 30-40% chance of recovering”. 30 percent? That sounds really bad. He tells me that the virus tried to attack my brain (he actually used the term "insult") and that this was my body’s way of protecting the brain from the virus. A defense mechanism. Somehow this doesn’t make me feel that much better, although I do realize that things could have been much worse. I have been diagnosed with ANOSMIA.
I am told that I need to have a brain MRI to rule out a tumor, or anything else in my brain. It all sounds very sinister and scary. I ask him what can be done in the meantime. "Nothing much… You just have to hope that your olfactory receptors can start regenerating spontaneously. Slowly. Maybe they will and maybe they won't. Keep your fingers crossed. I will prescribe a course of prednisone and some beta-carotene.” Great. I feel discouraged and depressed when I walk out of the clinic. And make an appointment with another ENT for a second opinion. In the meantime, I take the prednisone and beta-carotine. Nothing happens. I also decide to give acupuncture a shot, no matter what the ENT said. Nothing to lose… except a few hundred dollars. And, after 5 acupuncture visits - at $50 a pop - (which I can hardly afford)… nothing.
Meanwhile, “the second opinion specialist” gives me a blind smell test. I can't smell a damned thing, but one of the samples causes my face to flush intensely and I feel a very strange strong tingling sensation ... My guess is that it's lemon. "Ammonia", the doctor tells me. Right under my nose and I smelled NOTHING. I am not encouraged. Food tastes like nothing. Chinatown, where I live, which always had a very specific smell, smells neutral and sterile. Everything smells neutral and sterile, including my cat’s litter box. I feel like I live in a virtual world. I am a foodie and love to cook, which makes this so much worse... I also realize that I can't tell when food is spoiled or when gas is leaking from my stove. I keep burning the food I am cooking, so I have to start setting a kitchen timer every time I turn on the stove. And hundreds of other little things we never think about. Unless we can't smell...
The second specialist puts me on a much stronger dosage of prednisone for a much longer period of time (about a month). My blood sugar goes haywire, I can’t stop eating, I gain 15 pounds, I feel dizzy, but I persevere. I start getting some phantom smells (which according to doc is a “good sign”), and an occasional strange tingling sensation in the back of my skull. Not sure if the latter means anything, but there is definitely a prednisone connection.
I decide to start a Facebook page to air out my frustrations. I call it “Senseless Life: Living with Anosmia” (“anosmia” has become the word of the year). Making posts on my page helps, psychologically. It’s one thing to be told that this is a fairly common condition, but it’s another thing to communicate with people who are experiencing the same thing you are, and hear their own stories. Many visitors come to the page and comment, and I meet other anosmics who understand exactly what I am going through. Some are handling it better than I am, most seem to handle it worse than me. I even find out that a couple of my “real life” and FB friends have either had anosmia in the past or currently have it, and I had no idea until I started talking about it online.
I learn so many things about the condition, things I was completely ignorant of : like the existence of congenital anosmia - people born with no olfactory nerves hence no sense of smell; as well as “head banger" anosmics – those with head injuries which caused them to lose their sense of smell permanently. And then there are those with sinus problems. And so on and so on. My head spins. But I try to keep my sense of humor about the whole thing. It's the only way to deal with it.
The latest ENT is very thorough and wants to test me for every disorder known to man that may possibly be contributing to my anosmia, since my condition seems so severe. I get an MRI, and a catscan, both are negative. I get blood tests and they take so much blood that it keeps coagulating as they move from tube to tube. I pass out and the phlebotomist tells me she had never seen a prescription form where everything was checked off until she saw mine. I even get tested for congenital syphilis, which I now know I don’t have.
I am referred to a consult with an immunologist because they see something in the hundreds of test results that may be an issue. Or not. This is becoming a medical nightmare. But I persevere. I want my sense of smell back!
I am getting a little more desperate every day. I contact Monell Center, where sense of smell is researched, and ask them if they are running any clinical studies. I want to be their guinea pig. But apparently their funding was lost just this year and I would have to pay a grand and half to be seen.
The researcher who responds, Dr. Beverly Cowart, is very nice and gives me some tips. There is no specific treatment for this, she says, but what seems to work for some people is neurofeedback. Train your brain to "learn" to smell again, even if you can’t smell what you are sniffing. Assemble a kit of non-irritating scents that are different from each other and sniff them every single day in order to stimulate the regeneration of my lost olfactory receptors. Sounds good to me. I use 5 scents: vanilla extract, lemon extract, cumin, Earl Grey tea, and coffee, and do it religiously for about 6 months… every single day… just before going to bed. I even take my "smell kit" with me when I go away. I can smell nothing, but I keep sniffing away.
And suddenly, one day I think I can smell coffee in my smell kit! But it doesn’t smell like coffee. It smells like nothing I can really describe, nothing I ever smelled before. At first I am not even sure if it's real, but I keep sniffing it and smelling it. A little later I start getting whiffs of the same scent here and there, occasionally, outside. No coffee in site. Strange. Then I figure it out: cigarettes! This is what cigarettes smell like to me now, whenever I pass by a smoker in the street. Like coffee, which does not smell like coffee should smell. I feel like I am really making progress now, and am very encouraged by this.
Little by little, I start catching fast whiffs of other things, but they all have the same scent, everything that I can smell, smells the same to me, and not at all what it 's supposed to smell like. But the Monell scientist predicted this, so it’s all good.
One of the first things I was able to “taste” was … Rice Krispies cereal! Which prior to my anosmia didn’t taste much like anything. Suddenly the cereal has a relatively strong taste, but again nothing that I can describe or compare to. Rice Krispies becomes my preferred meal. Gradually, and very slowly (too frustratingly slowly), my sense of smell is returning. At first, everything smells the same and not at all like it should smell. Then, very slowly and subtly some differences appear. For a long time scents are completely distorted. And again, this was predicted by Dr Cowart of Monell.
It has now been a year and four months since that horrendous virus took away my sense of smell, and although it is hard for me to say with absolute certainty, I think that I am about 90% recovered. It's hard to say because the recovery is so subtle and so gradual. Some things still smell distorted but most are not., and I can smell everything that has a scent, even a subtle one. I can’t tell exactly what helped me recover most, if anything, and neither can the doctors. It may have been the prednisone (which is supposed to give your olfactory receptors a regenerating jolt, and then let them do their work), it may have been the neurofeedback... but I think it was the combination of those two, or perhaps the synergistic effect of it all when I threw everything and the kitchen sink at my disorder - out of complete desperation.
Although I would love to figure it out, right now I am just happy that I have recovered enough to taste food again. And that I no longer have to live in a virtual sterile world. In fact, my sense of smell seems a lot more sensitive than it ever was, but I am not sure if it’s just relative to not having any at all for a year. Often these days I feel like a bloodhound, when semi-consciously I start sniffing out every little scent in the street, which my brain perceives as separate waves of smells... but it’s all good.
One thing I do know for sure is that I will never take my sense of smell for granted again, and that I have come out of this experience with a lot more awareness and knowledge about the strange condition called “anosmia” than I had a year and a half ago. And that I would like to share this awareness with others - after all, so many people have never even heard of anosmia, or realize that it can happen to ANYONE. And how much it can change the quality of one’s daily life.
I met Molly Birnbaum in NYC at a book conference, exactly a year after I lost my sense of smell: in May of 2011. Molly was a young aspiring chef when she was hit by a car while jogging, and among other things, completely lost her sense of smell. Since she could no longer taste food, she was forced to give up her dream of becoming a professional chef. And she published a book about it. I read the book in one day, and these are not even the types of books I normally read. I could not put it down. Even my mother read it--all of it--and she usually only reads romances. So I decided to invite Molly to speak at the Free Library of Philadelphia about her experiences and her book, and she accepted. Hers is the upcoming Free Library author event, on September 21, 2011.
Although I am now well on my way to complete recovery, having experienced anosmia first hand I would love for this book event to be a step towards greater public awareness about this condition, awareness so badly needed because anosmia is so rarely talked about, yet so commonly experienced.