AbScent community informs article on impact of parosmia

The lived experience of members of AbScent’s patient forums have informed a published article on safe foods, trigger foods, and the mental and emotional impact of parosmia.

A new article has been published on parosmia that we hope will be helpful for anyone who is living with this condition. The article is particularly important because it has been written using the input from members of AbScent patient forums.

Publishing a paper of this kind is one way of getting information to the people who live with parosmia, or the health care professionals who look after them. Until now, there has been limited information for doctors on how to manage patients with parosmia. This article is intended to provide some simple guidelines on what we learned from you, the patients.

We do not simply eat food to survive

Food is the backbone of most social interaction, from holidays to family life, workplace interaction, and schools. When the relationship between how we feel about food and these other social aspects of life is interrupted by parosmia, it is easy to feel depressed, isolated, and angry. The smell of something as simple as onions on a partner’s breath can mean an abrupt change in intimacy. Similarly, the many joys that our sense of smell bring us – the comfort of the smell at home, the unique scent of a loved one, a baby after its bath – those things are lost to those with parosmia and may in fact be disgusting to them.

Parosmia usually starts with people noticing that food is “off”, or simply different from before. This might be preceded by a period of recovery from a virus like Covid, where the patient feels that the sense of smell is coming back well. So the experience of parosmia is unwelcome and discouraging. Fluctuations to the altered sense of smell are also a feature and can happen weekly, daily, or even hourly. These rapid changes can be very distressing. To have the sense of smell “go back to zero” signals in the mind of the patient that their loss of smell may be permanent.

It is vitally important that family members and friends are informed and kept up to date. What foods are safe, and which ones are triggering can change from week to week. As with any life-altering health condition, the affected person will always feel better when supported.

So what is the best way to manage parosmia?

Get to know trigger foods and safe foods. We have research that demonstrates that coffee, chocolate, meats that have been fried, onions, garlic, cooking oil, eggs, some toothpastes and some home care products can trigger feelings of disgust.

Safe foods are a matter of experimentation – each person is different. Keep trying until you find foods that can be eaten. When parosmia is severe, bland foods such as boiled rice and pasta can be a good place to start. These can then be made more palatable by adding whatever condiments can be tolerated. Chilli sauce works for some; but check for onion and garlic content!. Sometimes the parosmia is severe enough to cause vomiting. Then meal replacement drinks (not protein drinks meant for body builders) can be a solution. Ask a pharmacist for advice.

Cold foods or room temperature foods smell less than hot food. Often a sandwich is ok especially if it comes from the cooler unit in a shop.

It’s important to experiment as you go because the trigger foods will change. Sometimes people don’t want to try because they worry about being disgusted. It helps to do this with a sympathetic friend, and to take tiny bites. Discovering that a previously disgusting food has returned to normal can be profoundly joyful. Keep trying.

Some people find that “pushing through” the bad taste is helpful. It would seem that the first bite is the worst, and by the third bite things have “normalised” to a certain extent. For others, this is just not an option, especially when the parosmia is severe.

A nose plug, such as is used by swimmers, can be an option when nothing else seems to work.