Living with loss of smell

It is an uncomfortable fact that many people will not experience relief from the sometimes unspeakable pain that smell loss causes. With the relationship between smell problems and quality of life now well-established, long-term support needs to address food issues, depression and the isolation experienced through smell disorders, which can involve both reduced ability to smell (known as hyposmia, or anosmia if there is complete loss), but also a distortion of smell (known as parosmia or phantosmia).

 

The personal consequences of smell loss

Smell loss is indescribable to anyone who has not experienced it and this fact alone can create a barrier between the patient and their doctor. It is not just the loss of the food/eating experience, but loss of the global experience of pleasure. The natural world, the time of day and year, and links that transport us to happy memories of the past – all these fall victims to smell loss, and

all of them are tied up with strong and positive emotions. Our relationships with family and friends can falter when the reassuring feedback of our loved ones’ smell is not there. Without these things, and the poignancy that accompany them, we are less ourselves, untethered from the normal human experience and feelings of joy. Many self-soothing mechanisms are also tied to smell – even a reassuring hug – and during the kind of long-running bereavement that accompanies the loss of smell, this simple self-help method is elusive.

 

Living with smell loss has external consequences too. Because of the recurring feeling that “no one understands”, “people for- get”, “they tell me I should be grateful it isn’t worse”, frustration mounts and alienation persists. People adopt coping strategies for this when dealing with others which can include pretending that they do smell, or resisting the need to bring it up in conversation. With these things comes resentment.

 

Helping someone accept and adapt is difficult, and much depends on the outlook of the individual. For a successful way forward, there needs to be empathetic support from the doctor, and where possible, a peer group. The following may be helpful in this process:

 

Food strategies

Assistance will be needed in adapting to a new way of seeing food. For this to be successful, the individual needs to be willing to be curious and a “sensory detective” in exploring nuance in texture, true taste, temperature contrasts, and colour combi-

 

nation on the plate. For those with parosmia, a willingness to determine trigger foods through experimentation, and discover also “safe” foods to establish a workable diet that is nutritionally balanced is vital. As parosmia can shift over time, the explorations need to be ongoing. In an overall sense, this tunes the person to be more observant of their experience of eating but also be more open to engaging with food.

It is important to avoid excessive use of salt or sugar, but to experiment with spicey, bitter or umami (a ‘meaty’ taste found in meat, mushrooms or broth) tastes. Combining tastes (for example, using ‘sweet and sour’ sauces) may also make food taste more interesting.

Further advice is available from the patient support groups listed below.

 

Personal safety

Our sense of smell plays an important safety role. Patients with a poor sense of smell are at higher risk of food poisoning and exposure to fires. It is essential to have a smoke detector, which is checked regularly, and to follow expiry dates on foods.

 

Positive ways of seeing the world

An open mind that seeks to focus away from the condition is central for adapting to life-long smell loss and is easier said than done. Getting out of doors and appreciating the sensory experiences of nature, even without smell, has great benefits. Absorbing hobbies that focus the mind elsewhere and require the use of motor skills also seem to be very helpful. It is perhaps the sensory input of touching jigsaw pieces, knitting needles, woodwork, etc, which assists in this. Meditation, mindfulness and yoga are all practices that have been reported by patients as being a solace in a world without smell.

 

Peer support

Once clinical interventions have been exhausted, patients need the support of their peers. Advice about positive ways of seeing the world, for instance, might be better delivered from those who have already adopted these techniques, have experienced the bereavement, and have a ready supply of genuine empathy, and time, for the situation. The patient's need is not “just” to be heard. It is to be heard and understood.

 

Peer support can provide many different things: safe spaces to unload, a chance to be heard by people who understand, opportunities to form bonds with people who are in different places along their journey of adaptation. This can go a long way to helping the many who experience the anxiety of the unknown as they begin to accept their diagnosis. It is this anxiety that causes problems that are separate from the smell dysfunction itself. A peer group is a friendly and supportive environment to sit and decompress.

 

Patients’ reports of loss of smell and its impact on their life

Patient 1:

“There were no nasal problems until I turned 30 and began to suffer from what I thought were recurrent colds and bouts of bronchitis, with breathing difficulties. It wasn't until my late husband and I went to live and work in Hong Kong, that I was diagnosed as having asthma and allergic rhinitis. I was given scratch tests which showed up mild allergies to a dozen or so things (no foods) all environmental. The scratch which showed up the worst reaction was to house dust. I am also allergic to aspirin and ibuprofen. This I was eventually told, is Samter's syndrome or triad. (Asthma, nasal polyps, aspirin). My sense of smell was coming and going at this stage. The rhinitis tended to be worse in the morning and my sense of smell vanished. By lunchtime, it had calmed down and the smell returned.

 

The rhinitis was treated with nasal sprays and anti-histamines and at one point I was receiving an annual steroid injection which worked wonders but this was withdrawn because of side effects such as osteoporosis.

 

In the late 1990s I was referred to an ENT consultant and a scan showed that I had significant polyps in my nose and sinuses and an operation was recommended. By this time my sense of smell had all but disappeared apart from the rare occasion when I was prescribed Prednisolone to treat asthma when it returned briefly each time.

 

A friend had recently had the same operation and reported that on his exit from the hospital, the first thing he noticed was the smell of newly mown grass. I was very positive and looked forward to having a similar, happy outcome. However, it was not to be. The consultant reported that there was a large polyp covering the olfactory receptors and he didn't remove it in case they were destroyed completely. He felt that one day (and has this day come?) there might be some serious research into the loss of the sense of smell and possible treatment. He said that at that time there was no real appetite for serious research. I think he said something to the effect it wasn't very "glamorous".

 

Since then, I have had 2 further polypectomies. On a follow-up appointment to the 2nd, I asked the registrar whether I might regain my sense of smell one day. Without lifting his head from writing, or even glancing at me, brusquely said "no, you may never get it back". I left the office feeling quite hopeless. That was one of my worst moments. The attending nurse ran after me and said I shouldn't take any notice and to get a second opinion.

 

Roll on to the 3rd polypectomy June 2019. Basically, no help or hope regarding the return of my sense of smell.”

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Patient 2:

“ After just four days of taking oral steroids, my sense of smell and taste returned as if by magic. The improvement to my life and well-being was nothing short of sensational, although it didn’t last. The wonderful intensity of returned smells and flavours showed what my senses were capable of. It seems to me that something is masking the olfactory process. Perhaps one day research will reveal what is happening in cases like mine, and indeed, will indicate how the condition may be treated. In future, if I find myself struggling, I will now be able to ask for a repeat prescription.

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My experience is that doctors have so much on their plates, anosmia is not given the attention it deserves. It is not life-threatening but does diminish one’s quality of life, in some cases to a degree unimaginable to a non-sufferer. “

 

Treatment options for loss of smell

Different treatment options are covered in more detail in separate sections of this guide, but we have summarised options that are particularly relevant with regards to loss of smell from chronic rhinosinusitis.

 

Smell loss is more common in CRS with nasal polyps but may occur in CRS without nasal polys, particularly in the setting of type 2 inflammation. The following options are usually considered;

 

Topical nasal steroids; these may be given as a spray, or maybe more effective in the form of drops or added to saline and used as a rinse or soak, especially after sinus surgery

 

Oral steroids; often achieve dramatic improvements in sense of smell but unfortunately, benefits are often short-lived and should be followed with nasal steroids to maintain benefit for as long as possible.

 

Sinus surgery; may achieve improvements in sense of smell but unfortunately, benefits may not be long-lasting and surgery should be followed with nasal steroids to maintain benefit for as long as possible.

 

For patients with type 2 inflammation, which includes the majority of patients with nasal polyps, biologics (in particular dupilumab) likely offer the most effective treatment in terms of restoring a sense of smell and can be used to achieve long-term improvement. They are currently licenced for use in the US and Europe although access to these medications will vary in different healthcare settings, and the cost of treatment may not be reimbursed.

 

Losing your sense of smell and taste can have a huge impact on your quality of life. It can be difficult to access support and it can be hard for friends and family to understand how it affects you if they have not experienced it themselves. There are two patient groups that provide resources to help and allow you to share experiences with others who have been affected – AbScent (www.AbScent.org) and Fifth Sense (www.FifthSense.org.uk).

 

 

 

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