AbScent’s Parosmia Focus Groups – real world learning from real patients

When you’re living with a smell disorder, one of our best pieces of advice is to stay curious about the food you eat. In the spirit of curiosity, Chrissi recently hosted two focus groups to explore individual experiences of different food types. 

Eleven people, all living with parosmia to differing extents, came together to help AbScent follow up a couple of leads that were suggested by a common thread of posts in our online community. At this point, we have to be clear that this is not scientific research and we cannot draw any conclusions to inform the way we manage parosmia. But the results were interesting to us and provide an insight into the kind of things people with parosmia might consider as they navigate daily life.

Food to refuel

For many, the early days of parosmia can make all food unpalatable, and bad days can pop up again from time to time. During those periods, don’t worry about nutrition – you just need to get calories to fuel your body.

Using meal replacement products like Huel, This is Food and Complan is a convenient way to get calories (UK brands, but similar products are available in other countries),. But we wanted to know if some were easier to consume than others for people with parosmia. We tested both pre-prepared drinks in bottles as well as powders that could be mixed with the liquid of your choice. 

When things don’t taste as they should, texture and ‘true taste’ are important. For example, some people found the pre-mixed Huel drinks, in all flavours, and Complan powder mix very sweet. Huel is based on pea protein, so it had a very different texture to the others, which were more milky. The base might also be a consideration for you: look out for milk proteins if you have difficulty tolerating dairy products.

Adding ingredients like banana, oat milk, and spices such as cinnamon, ginger, clove, or mixed spice improved the experience for some of our testers, but ultimately they agreed meal replacements were best for extreme circumstances. Exploring regular food for options that didn’t trigger parosmia was generally agreed to be the preferred route.

To have the greatest chance of finding a meal replacement drink you can tolerate, try with a dry mix, and experiment with different liquids, such as milk, oat milk, or other non-dairy milk replacements.

Get back to coffee

Coffee is possibly the drink people with parosmia miss the most. The odour chemicals in coffee are a very common trigger for the parosmia response, and many people can’t even walk past a cafe without being hit with the disgust response.

We were interested in reports we’ve been receiving of coffee syrups making things a bit more manageable. So we invited our brave panel to try small sips of coffee flavoured with a variety of coffee syrups: gingerbread, vanilla, hazelnut, amaretto, caramel.

On the whole, the group felt that this was just a lot of sugar, which would make anything taste nicer, especially something as bitter as coffee. 

The second group were asked to try coffee with warmed hazelnut milk. This was a much greater success and several people agreed with one comment that “it makes the coffee taste like coffee”.

And chocolate

We couldn’t let our brave testers go without an attempt to bring chocolate back on their menu. Again, hazelnut was our friend. Hazelnut spread and hazelnut praline easter eggs were a revelation and trying something that “smelled like real chocolate” after so long made one of our participants quite emotional!

Try for yourself

If you struggle with parosmia, we encourage you to get curious and see if hazelnut milk and hazelnut spread makes a difference for you.

Please log in to The AbScent Network and share your experiences so we can build a bigger picture of things that can help.

March 30, 2022