home

We watched the Millennium fireworks on a packed Southwark Bridge. They were wonderful. The air was full of strange smells, though none was intolerable, except when nearby revellers drank wine from paper cups. But the route back to the car was along a street that was now a four-lane-wide traffic jam, every vehicle belching fumes, and no side streets to escape to. The stench said: flee or die. I couldn’t override it. I started to run, feeling conspicuous under the sodium lights: ridiculous, helpless, and sorry for myself, though if I’d been running for fun, I wouldn’t have cared what all those strangers in their cars thought.

I was frightened. Every day I could eat fewer foods. I was down to milk and crème anglaise, fresh lemonade, broccoli, cold boiled rice and potatoes, bananas, green grapes, and Coke. Even these foods sometimes tasted slightly off. Would they soon be as bad as everything else? Would I have to choose between starving and choking on every nauseating mouthful?

Ian brought me a tray of crudités to try out: carrots, cauliflower, cucumber, shallots. As soon as I pulled off the plastic, an aggressive choking smell like concentrated ammonia hit me: the shallots. It filled my nostrils and lungs—filled me head to foot. I’d never had hysterics before, but I did now. Shrieking, ‘Help!’ I ran out into the cold till he’d thrown away the tray. The whole house reeked; I reeked. Opening windows didn’t help. I hadn’t touched the shallots, far less tasted them, but the distortion still filled my nose, and my hands and arms smelt if I’d rolled in them. Ian said they had actually smelt quite mild, and couldn’t smell them on me at all. I had a bath to rub off the smell, but my skin still stank. So did the house. It was morning before the smell was gone.

I went to see my GP. He was away, and the duty doctor looked glum; maybe she minded working during the holiday. I described my problem, said I was scared stiff that even the few things I could still eat would become distorted, and asked if I could possibly see a consultant quickly.

She sniffed dismissively. ‘I don’t think you’ll get an early appointment. Maybe in about six months.’

But surely this is urgent?—couldn’t you recommend...?’

Her tone was contemptuous as she said: ‘Patients and doctors often have very different ideas of what a consultant would consider urgent.’

‘But—if the things I can still eat get distorted?’

She shrugged. ‘You could go privately if you’re so worried.’ She closed my notes. End of consultation.

It beggared belief that she didn’t consider the sudden loss of two senses a matter of medical urgency. I was so stunned that I left without a word.

I had a medical string I could pull, so I pulled it. I asked a doctor friend if he knew an ENT (Ear, Nose and Throat) consultant whom I could see privately and quickly. He did. He got me a mid-January appointment, the first on Peter Ellis’s first day back from holiday—and on the NHS, not privately.

Ellis took a medical history, examined my nose and tongue, and got me to smell three vials of liquid. To me they smelt like alcohol, vanilla and plain water. At the end of testing I asked what they really smelt of. Aniseed, cloves and peppermint was the answer. ‘I see one or two cases like yours a year,’ he said; ‘and I’m very sorry to tell you that nothing can be done for you. You may have a spontaneous remission—it occasionally happens—but it’s unlikely. It’s perfectly awful for you; you have my sympathies.’

‘What if the distortions get so bad I can’t eat anything?’

‘I think they’re unlikely to get any worse.’ Wryly, he added: ‘Though you may think they couldn’t possibly get worse than they are now.’

Ellis’s verdict was probably right, but I didn’t accept it as final: doctors, even consultants at great teaching hospitals, can be incompletely informed or downright mistaken. We knew lots of scientists and doctors, so we started asking around. But taste and smell research in the UK seemed to be purely academic, and the researchers themselves didn’t know of any treatments.

I searched the web. I hadn’t thought of it before: in those pre-Google days there was far less information online, and less that was reliable. Most of the hits from ‘taste’, ‘smell’, ‘tongue’ and ‘nose’ were pornographic. But I also found medical sites that mentioned taste and smell loss, calling it ‘anosmia’. They didn’t mention distortions; they didn’t mention cures. Two or three said that it was likely to be permanent if it lasted more than six months. ‘At least it’s not life-threatening,’ said several sites; along with: ‘Install smoke alarms if you can’t smell anything;’ and, infuriatingly: ‘If loss of taste and smell upsets you, go for counselling.’ If? I was upset all right, but I didn’t need counselling, I needed a cure.

I found an anosmia sufferers’ support forum, read the current messages and searched its archive. Various members had, unsuccessfully, tried acupuncture, aromatherapy, homeopathy, organic yoghurt, Chinese seaweed, hypnosis, and surgical removal of nasal polyps. A few, however, were getting better. They were all patients of—Dr Robert I. Henkin! He was still practising, at The Taste and Smell Clinic, in Washington, D.C. One man was now fully cured, after three years of treatment; the others were improving.

One of them lived in England, like me: Mick O’Hare, a production editor on the New Scientist. He had completely lost his senses of taste and smell in 1998, after a bad cold, but only went to Henkin in mid-1999, after looking hard and unsuccessfully for treatment in the UK—and not until he had read a large selection of Henkin’s papers in the New Scientist’s library. When I emailed Mick to ask about Henkin, and about the cost of treatment, we began a friendship that continues to this day. He had already recovered about 40% of his capacity to taste and smell. He told me that Henkin’s charges were in the region of $2500. That seemed an eminently reasonable price for the restoration of two senses.

I asked him why Henkin seemed to be the only doctor anywhere in the business of curing taste/smell disorders. His reply was: ‘ENTs aren’t interested, because the disorders aren’t life-threatening, so they’re medically unglamorous. And they are rare, [C] so drug companies don’t fund research into cures. I was still sceptical—the more so because I didn’t know what I have since learned: that drug companies do not fund research even into deadly diseases if they are too rare to make finding a cure profitable. (Motor neurone disease is one such instance; another is Brugada syndrome.) (2)

Still, it was reassuring that Mick, who vouched for Henkin, had scientific training and was as scornful as I of ‘alternative’ medicine. Even more reassuringly, Henkin had passed muster with The New Yorker’s famous fact-checking department when they published Roueché’s article. Besides, I didn’t know what else I could try, and I wasn’t going to do nothing. If he didn’t cure me, I’d have lost $2500 and airfare—and what else could I do with the money? I couldn’t spend it on holidays or expensive meals, when I couldn’t set foot in a restaurant and dreaded walking down an ordinary street.

I rang the The Taste and Smell Clinic and got an appointment for February 11th.

The Clinic

I flew to Washington on the 10th, with a packed lunch of cold rice. I had dinner in my hotel room—milk and bananas from a nearby supermarket, which to me stank of rot, though it was clean as a whistle. I didn’t keep any for breakfast; Dr Henkin had told me to fast from midnight on.

Early the next morning I took a taxi to the Taste and Smell Clinic, a suite in a Georgetown office building. There were comfortable sofas in the reception area, but the offices were utilitarian cubicles crammed with test equipment and file folders stacked on high metal shelves, desks and no-nonsense straight chairs.

Henkin came out to greet me: a tall man in his late sixties, I thought (in fact he was in his late seventies), powerfully built and bursting with vigour. He had olive skin, thinning white hair curling over the collar of his white doctor’s jacket, hooded, ice-chip eyes, and an impressively deep voice, frank and ingenuous, that went up with incredulity at the ends of sentences.

Dr R.I. Henkin

photograph: Ian Fleming

A medical student named Robbie weighed me, took my blood pressure, and returned me to Henkin, who sat me on a straight chair beside his desk, described the tests he would be administering, and started a rapid volley of questions. Allergies? Similar problems in my family? Mother’s health? Father dead—what of? What about operations? When did my distortions start? What did I notice first? September—orange juice—anything before that?’

I remembered a drive in July when Ian and I stopped at a coffee shop that smelled so horrible—to me but not to him—that I went outside to wait for him, and suddenly felt so giddy that I lay down on a patch of lawn. ‘That night I began a dreadful cold, which turned into bronchitis.’

I expected him to say ‘Aha,’ knowing from Mick that bad colds were a major cause of taste/smell disorders. [D]

Instead, he said: ‘You had the bad smell before the cold?’

‘Yes, a few hours before.’

He frowned, unsatisfied. ‘What else? There must be something else.’

‘Well, I was still on antibiotics when I went in for the hysterectomy, and afterwards I was a long time in the recovery room; they were worried about my breathing.’

‘That was after the bad smell’—dismissively. ‘What about before?’

‘Um...I forgot: in May I had a hysteroscopy.’ (It is a minor diagnostic operation.)

‘General or local anaesthetic?’

‘General. Oh!—and for the next two days food tasted bad; and my skin smelt...chemical.’

‘That’s when it began,’ he said gleefully. ‘It’s not post-viral. The bad smell never starts before a fever, it always comes after. But anaesthetics can cause it. [E] You suffered a multiplicity of insults. Anaesthetic; hysteroscopy; the cold; bronchitis; more anaesthetic and the hysterectomy—but by then you were on your way.’

He asked about other illnesses, and whether I was on any medicines.

‘No other illnesses,’ I said, ‘except narcolepsy—’

‘You have narcolepsy?’—with that incredulous rising note. He got me to describe the symptoms. ‘Yes, it fits. These sudden onsets of nearly falling asleep—you say you don’t actually fall asleep?’

‘Very seldom; I take medicines that keep it under control.’

He asked about visual sensitivities; I mentioned fluorescent-tube flicker and photophobia, especially during migraines. ‘Migraine?’—hyper-alert again. ‘Of course, it fits. Do you get aura? What’s your first symptom?’

‘Nausea and sensitivity to light. I don’t get aura, except an illusion of having a sort of transparent soap bubble in front of one eye, that I can’t quite see, but I know it’s there.’

‘Those things: nausea, photophobia, the bubble: they are the aura. It all fits. You’re perfect.’ He threw himself back in his chair. ‘But what’s important for you to know is that you’ll get 100% better. Don’t worry...I had a woman come, I got her 95% better, but she said, "No I want 100%," and we did it.’

‘How?’

‘Added another drug.’

As he questioned me further he kept saying variants on: ‘It all fits, you’re perfect,’ smiling exultantly to himself. ‘You’re such a complex example, you have so many factors bearing on the illness—and they all fit. I’ll explain it to you later.’

He started the taste tests: drops on my tongue, in sets of three, from brown glass bottles. ‘Two drops of each set will be plain water; one will contain a tastant. Tell me four things about each set: which one has a flavour; whether it’s sweet, sour, salty or bitter;

the intensity, on a scale of 1 to 100; and whether it tastes pleasant, unpleasant or neither.’ He put a drop on my tongue from one bottle, closed it, opened another. ‘This...now this...now this:’ The instant I reported on one set, he was on to the next. At one point I crossed my legs. ‘Feet on the ground,’ he said. ‘No crossed legs. I want you to work. This is hard. You’ve got to give it 100% concentration.’

Taste testing

photograph: Ian Fleming

All the tastes were faint; in some sets all three drops were tasteless. To describe the tastes I had to use the words ‘pleasant,’ ‘unpleasant,’ or ‘neither.’ When I said, ‘Ugh, nasty,’ to one taste, he just repeated, ‘Pleasant or unpleasant or neither?’ Then came tests using drops of the same tastant in different concentrations; I had to grade the intensities.

Smell tests were also in sets of three; again, two of each set would be neutral. ‘Identify the one that smells, and describe the smell. There aren’t standard words for smells, so use your own—for example: pungent, flowery, fruity, rotten.’ he opened the first bottle and waved it under my nose. It was much harder than the taste tests. ‘Identify the one that smells. What does it smell of?’ All the smells were distorted. For the first two sets I could say which bottle contained an odorant, but not after that. The bad smell was in the bottles, in my nose, in the air. Henkin kept on with the tests, but all the bottles smelt the same: horrible. He wouldn’t take ‘Ugh’ for an answer; I had to say, ‘Unpleasant,’ and specify the intensity on a scale of 1 to 100—not per cent, he insisted, even though percentage is nothing but a scale of 1 to 100.

He kept saying ‘This is hard, I know it’s hard.’

He was right; it felt like struggling to answer impossible exam questions. ‘It’s upsetting, not being able to identify them.’

He smiled sympathetically. ‘It’s not surprising, though. Once you’ve been exposed to a stimulant for one of your bad smells, then for some time other things will smell worse than they otherwise would.’

Next came tests with the same odorant in different concentrations; as with the taste equivalents, I had to rate the intensities. Most of these odorants weren’t distorted. I was able to say that one was like disinfectant, one like floor wax.

He took me back to Robbie, who was to collect saliva samples from me. ‘She’s perfect,’ he said enthusiastically, describing my history and how I’d done in the tests. ‘We could stimulate her electrically and it would stop immediately, but we’re not ready for that. The narcolepsy, the migraine—I wish I could have her on grand rounds. Her distortions are severe. She looks as if there’s nothing wrong with her, and yet she’s incapacitated.’

I could have hugged him. For the first time in months I felt understood. My disorder was absolutely novel to me: I’d never heard or conceived of anything like it before it fell on me like a ton of bricks. I’d been flailing about inside, in need of a word that would help me grasp how it had shrunk and warped my life. ‘Ill’ and ‘disabled’ were too strong; ‘incapacitated’ was exactly right.

Robbie hooked me up to a saliva collection device—a suction cup attached to the inside of my cheek with tubes leading to test tubes. Every ten seconds for five minutes I had to dab my tongue with lemon juice to stimulate the flow of saliva. I could just hear Henkin, down the corridor, saying, ‘Sweet, sour, salty, bitter, on a scale of 1 to 100,’ to another patient.

Soon Henkin called me back to give a provisional diagnosis: ‘It won’t be final till Monday, when we have the results of the lab tests.’ My taste and smell functions were essentially intact. ‘What you have is’—he hesitated—‘a hallucination. A phantom. It’s real; but it’s a neurological phenomenon, not one an ENT specialist would know about. They know as much about problems like yours as the man who makes milk bottles knows about milk.’ (He meant that they focus on the nose and mouth, whereas my problem was neurological. I thought it an unsatisfactory comparison.)

‘It’s essentially an epileptic disorder. Don’t be alarmed at the word. It will never go further than this—you will never have a fit.’

I sounded interested, so he explained further. In a normal person, every stimulus that excites the brain is immediately inhibited, most commonly by a neurotransmitter called gamma-aminobutyric acid—GABA for short. But my inhibition mechanism for the smell receptors had become defective; I wasn’t producing enough GABA in response to smell stimuli. When there is a shortage of GABA, stimuli can flood across the synapses and cause brain synchronicity, a seizure-like state, like a focal seizure in epilepsy—one that affects only part of the brain. [F] The result is taste/smell distortions. (3)

My narcolepsy and migraines were evidence that I was susceptible to focal seizures. [G] ‘You had all the predisposing factors; it was just waiting to happen. And there are thousands just like you.’ He and his colleagues had ‘developed a unified field theory of epilepsy. With theories, there are the unifiers and the dividers, and I’m one of the unifiers’—with a sidelong glance as if wondering if I would get the Einsteinian reference. Deciding that I did, he waxed expansive, describing a paper they had just finished. I understood him in parts. He wasn’t good at guessing my level of scientific understanding, and slid between being too technical and too simple. But he never forgot he was a doctor. His discourse on the brain was interspersed with remarks specific to my case, and with reassurances made in a tone both forceful and matter-of-fact.

It was 12.30; I had been there for nearly five hours. I went back to the hotel to pick up my bag—I was spending the weekend with friends in Virginia. I was weak with hunger, so I went to the supermarket for milk and bananas. Normally I never eat in the street, but I couldn’t wait. Turning down a cul-de-sac to get away from traffic, I stood on the snowy sidewalk and wolfed a banana. I longed to be in a restaurant, eating ordinary food. The snow was grey, the sky was grey, the wind was raw; the optimism I had felt at the clinic oozed away. The memory still makes me shiver.

On Monday morning Henkin told me that the lab tests had confirmed his clinical diagnosis. My taste buds and nasal receptors were fine; the problem was in my brain–a phantom, which masked some smells, but made many more seem foul. ‘You’re a textbook case. It’s a hallucination, but it’s real—don’t forget that. It’s in your brain, but it’s not "all in your mind." You don’t have any control over it.’ The cause was almost certainly the general anaesthetics I had had in May and July—he told me that about 2% of people who receive inhalational anaesthesia develop taste/smell problems, though not usually so severe as mine.

He proposed to treat me with low doses of haloperidol, one of the oldest anti-psychotics; he prefers to prescribe older drugs, because their side-effects are well documented. I would start on 0.5 mg a day, rising to 1.5 mg. (The dose for schizophrenics is from 2 to 50 mg a day.) At that level there should be no significant side-effects, except possibly raised appetite and some fatigue. ‘Later on we’ll add an anti-convulsant as well. But you mustn’t think you’ve got schizophrenia or epilepsy because I’m prescribing these drugs.’ [H]

I assured him I wouldn’t. He gave me a letter for my GP, who had said he would prescribe, on the NHS, whatever medicines Henkin said were necessary.

I was to keep a daily taste/smell chart, tracking any changes in my taste/smell distortions, on a scale of 100 to 0. 100 was where I was now, severely distorted; 0 was the goal. ‘You won’t notice any change for a while, anywhere from six weeks to six months. But your numbers will go down to 0, no question. The only question is how soon, and whether we’ve got the dosage right.’

‘Even 50 per cent would be wonderful,’ I said.

‘Not per cent,’ he insisted. (Months later I realised that he objected to the term ‘per cent’ in this context because the numbers do not describe a quantifiable phenomenon, just the patient’s subjective perception of stasis or change.)

I was to email him my numbers every week, and ring for a telephone consultation every three weeks. He reminded me that the chef in Roueché’s article hadn’t come back when his distortions returned, because he didn’t want to disappoint Henkin. ‘This was the NIH, we ran double blind tests. I’d told him I might give him a placebo at some point; and I’d told him what a placebo was, and why I might do it. I’d told him to ring if he started getting distortions again. But I was so disturbed that I went to the director of the NIH. My point is—you’ve got to tell me the truth about your distortions. If they don’t improve, you mustn’t feel you’re letting me down. And you’re my patient, under my care. The fact that you’re in England doesn’t mean I’m not treating you. I am, by phone and email. I’m responsible. Your GP is prescribing the drugs, but he’s not responsible, I am. It’s my neck.’

The appointment was over. Walking me back to the reception area, he said, ‘And remember—the drugs are a life sentence. You’ll have to keep taking them even after the distortions disappear, otherwise they’ll come back.’

That reminded me to ask about the ‘electrical stimulation’ he had mentioned to Robbie. His eyes lit up. ‘It’s called trans-cranial magnetic stimulation.’ They were having remarkable success with it; hoped that it would eventually replace lengthy drug treatment as his first choice of therapy. But it was still experimental. It worked immediately on some patients; but some needed two or even three treatments; and for a few it didn’t work at all. He hadn’t tried it on me because I lived so far away, and return trips would be expensive.

His parting words, delivered with great intensity, were: ‘Don’t worry, you’ll get better—100% better. I guarantee it. But it will take time. And it’s hard. I know that.’

I took a cab to the airport and caught my flight home, feeling shrunk in the wash from five days of sitting in buses, aeroplanes, hotel lobbies, waiting rooms, shuttle vans and taxis, all full of horrible smells.

Uphill

Six weeks to six months, he had said. I clung to a protective scepticism: though on one level I believed Henkin, it was hard to keep believing when even toothpaste tasted bad. But I didn’t have to wait even six weeks. I hadn’t been able to smell urine for months. One day, after only two weeks on haloperidol, I smelt urine, faintly, but unmistakably, for the first time since October. The next week, passing a hot dog stand that had reeked of distortion for months, I caught a perfectly ordinary whiff of rancid fat—undistorted. I stopped and sniffed deep in a rapture of perfectly ordinary disgust. I had longed to smell earth and grass again, but urine and rancid fat were just fine.

Some distortions were becoming less florid. Traffic fumes were still horribly distorted, but no longer made me want to flee, and foods that I could eat had a bit more flavour and fewer suspect overtones. The changes were slight—I hoped they weren’t just wishful thinking.

Taste/smell disorders are so uncommon that there are no colloquial words for them. ‘I have a phantom,’ I told friends, but that required a lot of explanation; and there is no single medical terms that covers all the disorders. Anosmia is complete absence of smell, hyposmia, a diminished sense. Dysosmia signifies smell distortions.(4) Each term has its taste equivalent, ending in -geusia. I could hardly tell people that I had dysosmia and dysgeusia, with mild hyposmia and hypogeusia. No wonder the online support groups stuck to ‘anosmia’.

In early March steam from the kettle stopped smelling foul. The world was still full of distorted smells, but most were less overpowering. I tried smoked salmon. It was tasteless, but no longer smelt rotten. Elated, I tried other cold fish and meat. Prawns were distorted, but less overwhelmingly. But salami was unspeakable, and pâté tasted like raw blood; and when Ian tried cooking chicken, I nearly had hysterics again. I jumped into the car and drove round the ring road while he aired the house—not that it did any good: the stink came with me, and was still all over the place when I got back.

But when he cut the grass for the first time, I could smell it. I grabbed a handful of earth. Faintly, faintly, I could smell it. [I]

In early April Henkin raised my haloperidol dose to 0.75 mg. The lilacs bloomed, and smelt very mildly of lilac. And I could eat olives: a pungent taste after months of milk and rice. Tea stopped smelling bad, and I could distinguish between the musty distortion of coffee and the sharp distortion of tomatoes and onions. But I was still a long way from 0. For every odour and taste that had improved, there were hundreds that hadn’t. At the present rate, I might die of old age before I could make coffee for someone, let alone drink it myself.

And the higher dose of anti-psychotic was making me deadly tired. I was fine in the morning, but fatigue set in by mid-afternoon. Sometimes I had to shake myself not to fall asleep at the computer; my legs were full of lead when I ran upstairs, Pilates and ballet were exhausting, not invigorating. By nine-thirty in the evening I was yawning uncontrollably; by ten I was in bed and asleep—for ten or eleven hours, not my usual eight.

The fatigue got worse. I felt profoundly unwilling to put one foot in front of the other. I told Henkin, and he cut the haloperidol dose back to 0.5 mg. But I was still dreadfully tired—and also affectless, I gradually realised. I wasn’t depressed, but my pleasures were temperate. I was never excited, nothing was vivid; and I was completely uninterested in sex. The world wasn’t grey, but its colours were muted. But I put up with the fog for the sake of making progress with distortions.

In June Henkin started me on valproic acid, an anti-convulsant, in addition to haloperidol. It soon had an effect. Coffee still smelt bad, but not intolerable; traffic hardly smelt at all. I couldn’t enter a restaurant or eat strawberries, but in July I ate raspberries, blueberries, and bread. I was beginning to believe that I might eventually get ‘100% better’.

I was still apathetic, and in July I told Henkin about it. ‘I’ll change the drug,’ he said instantly. ‘I don’t want to solve one problem only to land you with another one. That’s not the point at all.’ He told me to cut down gradually on haloperidol, then start on another anti-psychotic, Mellaril (thioridazine).

Once I was off haloperidol the apathy slowly lifted—though not the fatigue—and my sexual appetite and delight in life returned. If the flatness had been like the grey English winter, the return of emotion was like the slow English spring, a bit brighter every day.

By September I could eat cold sausages—the first meat for nine months. By October—thirteen months after it all began, and seven after starting treatment—my distortions were at about the level they had been the previous October. I could eat out again, if the restaurant was well ventilated (no coffee shops, no pizza joints). Smell distortions were noticeable, but tolerable. Taste distortions were also milder; but I couldn’t eat foods that were even slightly distorted. Why not, when I could tolerate mild bad smells? I am suspicious of explanations that appeal to evolution, but I did wonder, and still do, whether we may not be hard-wired to reject food that tastes or smells even slightly bad. Most bad smells are not actually noxious, but spoiled food can kill you; an ‘off’ taste does serve as a danger sign.

Mick O’Hare and I still participated in the online anosmia support group, though it made us impatient. Most of the members wanted ‘natural’ cures, and were deeply averse to drugs. Some American members were reluctant to go to Henkin because their insurance providers refused to cover out-of-state treatment. A couple of them actually asked Dr Henkin to share his expertise with their own doctors, gratis, and were offended when he refused. Even when they got to the Clinic, a few found obstacles. One woman was put off by the absence of wraparound sleekness: the starkly utilitarian offices with their stacks of folders on metal shelves. Another walked out because she found him overbearing.

As indeed he was—Mick and I jokingly called him God. He was genuinely kind. He asked about my fatigue every time I rang, and there was real concern in his voice. But he lacked bedside manner. He knew his treatments worked, and was brusque when people’s questions indicated that they didn’t believe in Western science.

He could be brusque even with those who did. When Mick, who was close to being completely osmic, said thank you in one of his three-weekly telephone calls, he emailed me that: ‘Dr Henkin quite sweetly said: "No thanks is necessary Mr O’Hare. It’s what I do."’

A month later I too told Dr Henkin, on the telephone: ‘I’m so much better, and I’m very grateful to you.’

‘You don’t need to be grateful to me, Miss Bernard,’ he said gruffly. ‘It’s my job.’

‘Yes, it is. But I can still be grateful’—at which he gave in.

By late November 2000 my numbers were down to 17. I was tired of being tired; I vividly understood why some schizophrenics stop taking their pills, for though I well remembered Henkin’s warning that the pills were a life sentence, I kept having fantasies of stopping them once my distortions were down to zero.

By February 2001, after a year of treatment, my numbers had dropped from 100 to 15. But Henkin had warned me that the curve of improvement would begin to flatten, and he was, as ever, right. I was stuck at 15 all through March. I alternated between pessimism—was this as good as I would ever get?—and optimism, when I remembered my desperation a year back. The distortions hadn’t vanished, but they were no longer imprisoning me at home.

Henkin increased the dose of valproate. By late April I was down to 12, and I improved throughout the summer. By September, two years after the distortions had begun, I was down to 7.

After the September 11 attacks on New York and Washington, both Mick and I emailed Dr Henkin, hoping that he and his family and colleagues were safe. His reply to Mick read:

Dear Mr. O’Hare: It would take more than a terrorist to inhibit me from helping you and the other patients who require the expertise I want to employ for your benefit.

RIH, MD

No wonder we called him God.

For the next year my numbers crept down, very slowly. By September 2002—three years after the disorder began—I was at 1.25. By February 2003, after two years of treatment, I was down to 1. I could eat steak, tomatoes, orange juice, even onions and chicken. Zero was tantalisingly close, but a few things, principally foods, were still distorted: yoghurt, buttermilk, dark chocolate, caramel, maple syrup, red wine, coffee, lobster, . Coffee still smelt distorted, though bearably; so did white spirit and ethanol; and a number of odours that were no longer distorted were still muted.

My mother was dying of emphysema, and in March I went to New Brunswick to spend six months with her. March, April, May: no progress. I kept remembering the woman Henkin had described who got 95% better, but said, ‘No I want 100%.’ I was 99% better, but I, too wanted 100%. And I was tired most of the time. I thought this must be how I would feel in my eighties. I was a fit woman of sixty-one; by my reckoning that was late middle age. I didn’t want to be old yet.

In our telephone conversations Henkin had told me more about trans-cranial magnetic stimulation, the ‘electrical stimulation’ that he hadn’t tried on me because I lived overseas. It still didn’t work for everyone, but when it did, it worked immediately, and often permanently. I wanted to try it. I was only seven hundred miles from the Taste and Smell Clinic, and I had my mother’s car.

Back to Washington

Ian came over in June, and we drove to Washington together. I was glad he could go with me: the memory of eating bananas in that cold Georgetown cul-de-sac had given me an irrational horror of going alone.

I had arranged to interview Dr Henkin for this article, so we met at the Clinic the day before my appointment, and talked for nearly three hours. I had come prepared with questions, but for an hour I hardly got a word in edgewise.

Henkin talks and moves quickly, and has the impatience of the quick thinker. Some of his self-confidence is perhaps defensive—a reaction to having his work ignored by most ENT clinicians—but much of it is innate. He started out in music, not medicine, and studied with Schoenberg at UCLA. ‘I worked out what he got wrong with the twelve-tone system,’ he told me. I doubt whether many of Schoenberg’s students have made that claim. Henkin then became an assistant film-music composer; the cat-burglar music in To Catch a Thief is his. But he started wondering about the mechanisms by which music affects the emotions, and became a doctor in order to do research in auditory physiology.

He became a taste/smell specialist by accident. While still a medical student, he read an article about animals who gobbled salt because of an adrenal insufficiency, and wondered whether the same was true of humans. In 1957 the standard tests for adrenal insufficiency took three days. Henkin devised one that worked immediately, and the newspapers picked it up; so he was asked to do his test wherever his medical studies took him: ‘I became the resident adrenal insufficiency expert.’

In the late 1960s he went to the National Institutes of Health to specialise in neuro-endocrinology. Here, too, he was asked to do his test. ‘One thing led to another. I published papers; patients started being referred to me with other types of taste and smell problems.’ That was when he first saw patients with drastic taste/smell loss or distortions. There were no treatments available. He experimented, and found that in some patients zinc stopped distortions and cured hyposmia. One such patient rang the National Inquirer: and said, ‘There’s a magician in Washington who can cure taste and smell.’ When the Inquirer piece appeared, the NIH got hundreds of letters asking for treatment. Henkin was still trying to work in neuro-endocrinology; taste/smell was just a sideline. But: ‘The NIH is a political organisation. I became the taste and smell doctor. And it was fascinating.’

In 1969 he founded the first NIH program to evaluate and treat taste/smell disorders. He was still a neuro-endocrinologist; in 1975 he became Professor of Neurology and Pediatrics at the Georgetown University Medical Center—and also director of their Center for Molecular Nutrition and Sensory Disorders and its clinical arm, The Taste and Smell Clinic. He took the clinic into the private sector in 1986.

Zinc was something of a blind alley; only a few patients responded to zinc sulphate tablets as dramatically as the trio described in the New Yorker article. The most useful drugs for distortions turned out to be psychotropics: anti-convulsants and anti-psychotics. Because of that, he was always on the lookout for new treatments for depression; that is how he came to TCMS.

Trans-cranial magnetic stimulation uses powerful, rapidly changing low-frequency magnetic fields to induce electric fields in the brain by electromagnetic induction.(5) It has been used since the late 1980s with some (though variable) success to treat depression, epilepsy, tinnitus and migraine. Its effect is to change brain activity in particular areas; the change can last for a period, or in some instances be permanent. It can be applied with high or low frequencies. Low frequencies, in the region of 1 Hz, activate GABA; higher frequencies inhibit it. No one knows how it works, except that it either increases the production of GABA, or makes GABA more efficient at inhibition.

It is non-invasive and painless. The doctor places a wand on the head and turns it on for a few seconds, then does it again in a different position, and again, for several minutes in all. The pulse feels like gently tapping fingernails.

Dr Henkin and his colleagues did their first trials of TCMS in 1999. Their first TCMS patient was a wine grower with post-viral anosmia. Henkin and his colleague, Dr Samuel Potolicchio, gave him trans-cranial magnetic stimulation at George Washington University Hospital. The wine-grower had to fly to California right after his session; he rang from the airport to say that he could now smell normally. He has never had to return; he sends Dr Henkin a case of wine every year.

Henkin next tried TCMS on a woman who worked in a nearby office. She had had distortions ever since a head injury eighteen months before, and couldn’t taste salt or sweet at all. He gave her the usual tests, and he and Potolicchio administered TCMS. Back at the clinic he tested her again; her taste and smell were now absolutely normal.

Stunned by their success, they began regular trials of TCMS, and soon found that it did not work for everyone. They were at this stage when I visited the clinic in 2000. By the time of my return visit in 2003, they had used TCMS on over 100 patients. Some were cured immediately and completely. A few had not responded at all. Others required two or more treatments for a full and permanent cure.(6)

Drug treatments for taste/smell disorders work slowly and have unpleasant side-effects, such as the fatigue I suffered from. When TCMS works, it is far faster than drugs, even for patients who need several sessions; and its only known side-effect, in a few people, is transitory headaches.

An off-label testimonial to the efficacy of TCMS in treating taste/smell disorders comes from a 2004 double-blind study in which it was used to treat depression. When asked about side-effects, one patient ‘reported a marked improvement and sharpening of taste and smell.’(7)

TCMS Day

My appointment was for 8.30; two other patients would be having TCMS that day. We all arrived at the same time. I filled in the same forms I’d filled in in 2000; then Henkin called me into his office. His desk held the same array of dropper bottles in the same taped-up cardboard box; the tests had the same protocol. ‘Sweet, salty, bitter or sour?' he would ask, dropping a drop on my tongue. ‘Don’t cross your legs; we’re here to work.’

By late morning he had tested us all. He got us together and described the treatment in simple terms, then drove us to George Washington University Hospital, where Dr Potolicchio would administer TCMS, applying it first to one shoulder, to check that we responded to it, then to our heads. We shouldn’t worry if our hands twitched; it was normal, and the procedure was harmless.

At the hospital there was a delay, because Dr Potolicchio was involved in what Henkin apologetically described as an ‘intense procedure.’ During the wait he took me to meet another colleague, Dr Lucien M. Levy, to see some smell-related fMRI scans that he had mentioned during our interview the previous day—fMRI allows them to quantify olfaction reactions by administering taste/smell tests during a scan. Until fMRI, they had no objective evidence of what happened in the brains of patients exposed to taste/smell stimuli; they could only report the patients’ subjective responses.

Dr Levy’s fMRI kingdom was sleek and minimalist—just a few multi-million-dollar machines. Dr Potolicchio’s TCMS room, crowded with machines on tables and trolleys, reminded me of Henkin’s office. The magic TCMS wand was a black annulus with a