Karen’s Story: Finding Support and Guidance for Pre-Covid Smell Loss and Recovery
In her sixties and living in East Sussex, Karen is a full-time carer for her mother, who suffers from dementia. Shortly after returning from a working life in America to look after her mum, she was devasted when she lost her ability to smell. “I am a person who has always enjoyed my sense of smell – walking in woods, perfume, cooking smells. I like restaurants and food shops that actually smell of food. It worried me, not being able to detect smoke or gas, and not being able to smell my house or myself was disturbing. I also lost my ability to taste other than for things like salty or sweet. I was living with a real sense of loss.”
This happened several years back and while unable to put her finger on the reason for her anosmia, she suspects it was likely due to a viral infection. Rather typically with post-viral sufferers, Karen’s olfactory senses were affected in other ways too. “At times I’d have a lot of imaginary smells which were hard to cope with.” She found that coffee smelt rancid and she struggled to shake off phantom odours that seemed to follow her around. “The natural reaction is to leave the environment you are in, yet when I did so the same gaseous smells persisted.” Karen continued to suffer from these conditions – known as parosmia and phantosmia – though the episodes became less frequent as time wore on.
Back then, Karen did not know that her conditions had names. She searched in vain for information and after six months of frustration, she went to her GP. “He told me it was something I’d just have to live with. I tried the steroid drops he prescribed but they had no effect.” Later, she came across Fifth Sense and was delighted. “I read everything on the website! The research, the advice. I followed it all – the smell retraining, the nasal cleaning – it gave me hope and kept me going.”
During Xmas 2019, matters came to a head. “I cooked a complex Christmas dinner, the whole works, and couldn’t taste or smell anything. Once again, I was devastated.” Karen returned to the Fifth Sense website where she discovered an ENT specialist sympathetic to smell disorders. A long wait beckoned though via the NHS, something she could not bear. “It was quite expensive for me to go privately. As a carer I had to arrange and pay for my mother’s care as well as the private consultation, but I was going.” The consultation offered more than Karen had enjoyed previously (“he was lovely”) and a thorough check-up included an endoscopy examination of her nose and sinuses. It was reassuring to hear that her nasal passages were fine. Further investigation was mooted in the form of a CT scan, but while Karen mulled this prospect events were to overtake her.
In early March 2020 she was struck by a “strange flu.” Karen realises it might have been Covid19, though she was never tested. “It was at the beginning of the pandemic – doctors had pretty much closed down and 111 was inundated. It was a horrible flu – fever, painful coughing and deafness in one ear. My mother, who I care for, had all the same symptoms, other than the deafness. I spoke to the GP over the phone and was prescribed antibiotics.”
If Karen had contracted Covid it was ironic, because in coming through it, her story has a happy ending. “A few weeks later I was in a food shop and could smell the bakery! I rushed to the vegetable section of all places and yes – I could smell the vegetables! I hadn’t yet got my hearing back but I could smell again!”
Karen’s story should offer hope to many, particularly those suffering from post-viral anosmia. Studies have shown that spontaneous recovery is more common in patients with post-viral loss than with any other causation. Often though, recovery is partial rather than complete and it is not possible to predict how long it will take for things to change. That said, one study published in 2014 found that over 80% of participants experienced subjective improvement in olfactory ability within a year of the initial loss. Happily, Karen’s ability to smell remains to this day, yet the awful experience still haunts her. “I don’t take smell for granted – I think if my body can lose it once it can lose it again.”
Karen contemplates the plight of those with smell loss who, like her, have no other related symptoms. She wonders if they may feel embarrassed to consult their GP (“can I really bother him/her with this?”) yet they might have underlying contributory conditions. “Our health system is based on waiting for or reacting to clinical symptoms. But people sometimes have sinus problems for example, without suffering the sorts of issues that justify further investigation.” Having taken matters into her own hands by seeking specialist advice, Karen would like to see GP’s referring smell loss sufferers as a matter of course if initial treatments fail to have any impact. She read about a study suggesting that anosmia may contribute to shortened life spans. While Fifth Sense would point out that further research is required in this area, Karen notes that such a finding might change things, having both patients and clinicians taking anosmia rather more seriously.
Karen was pleased with a recent Fifth Sense initiative that allowed members to print off a leaflet for their local surgeries. “It must be difficult for GP’s if they feel unable to provide solutions. I gave a leaflet to my doctor so at least he can point people towards the charity. Self-help through things like smell training or nasal rinsing offers hope. I was so grateful for the website, for Fifth Sense’s support, advice and knowledge. It kept me sane over the years.”