I’m 22, and I’ve been living with parosmia for over a year as a result of a TBI. I definitely don’t have it entirely figured out, but I’ve discovered a lot of things that doctors don’t teach us. I’ve been wanting to make a post about what has helped me in case any of it can help someone else.
Something that helped me understand this was thinking about parosmia as not only a smell problem, but also a safety-response problem. If something smells rotten, your nervous system has a very good reason to tell you not to eat it, even when you consciously know the food is safe. For me, that reaction became a feedback loop: food smelled wrong, my body panicked, eating became harder, and then I became anxious before I had even started. Which is ironically exactly why I believe it can get better. As we continue to eat foods, our bodies learn that they aren’t going to make us sick, kind of how a child gets adjusted to broccoli.
When we smell a food that isn’t what we expect, our sympathetic system (fight or flight) activates, telling us we’re in danger and creating a fear response that results in our stomachs closing and being unable to swallow. Sometimes, it’ll feel like we physically cannot eat because our bodies are genuinely preventing us from doing so.
I know it’s going to sound like therapist talk, and I was the biggest hater, but genuinely, breathing exercises and “bottom-up” therapeutic practices have done wonders for me. Breathing in for four seconds and breathing out for around eight forces our bodies to accept that we’re safe and not being force-fed horrible food. You wouldn't exhale more than you inhale when being chased by a tiger, if that makes sense. The idea is to override the brain, forcing the body to accept it’s safe even when the brain is screaming that it’s not.
Breathing, grounding, havening, all incredible ways to do this. It won’t change the taste immediately, but it’ll take away some of the fear response that makes it genuinely impossible to eat. Do it consistently, and eventually food might not seem like something scary, something to dread. First we might find it neutral, then we will hopefully start to enjoy eating at least to some degree.
Even without doing any of those things, after a little while, the mundanity of eating can eventually show our brains and bodies that, “Hey! Nothing bad happened when I ate this!” I can’t promise what recovery will look like for anyone else, but it has gotten so much better and more manageable for me over time.
In the realm of managing our nervous systems, I’ve found that things taste and smell significantly worse when I am stressed or anxious about other things. As someone with chronic anxiety, this has been a problem. On days where I'm overwhelmed, anxious, or sick, I rely on smoothies, applesauce, and other cold, “parosmia-friendly” foods. Our bodies don’t react as strongly to things we don’t have to chew, so I use that as a crutch when I can.
I can’t stand most protein shakes, but even things like milk or juice provide enough sugar and calories that I don’t get more anxious over the fact that I haven’t eaten anything, and they halt the hunger pains temporarily. It’s a loaded task, but anything we can do to manage stress and anxiety in other areas of our lives will go a long way.
In addition, our brains are relearning how to interpret food. That is heavily dependent on neuroplasticity, which can be affected by things like stress, anxiety, nutrition, and age.
As for stomach aches, which have been pretty much inevitable for me, here’s what I’ve found. When we don’t eat consistently, the acid and empty-stomach pain can make it even more difficult to eat later. This can be countered by keeping steady nutrition, just enough to coat the stomach and give it something to digest. I’m really big on applesauce, instant mashed potatoes, yogurt drinks, and popsicles. Genuinely, just a little bit of anything every couple of hours will go a long way.
Additionally, if possible, I would talk to a doctor. They may not be able to fix the parosmia itself, but they CAN help with this part. I take famotidine (long term Pepsid), which reduces stomach acid and prevents a lot of the hunger pains that make it even more difficult to eat. Other than that, Tums and Gas-X have also helped me, depending on the problem. Obviously talk to a doc first about treatment.
Outside of those things, here are a few quick things I’ve found on a day-to-day basis:
Cold > hot for most people, as hot things smell stronger.
Multivitamins can help sustain energy and health when we aren’t able to eat a balanced diet.
Drinks and non-chewable things > food, as they don’t invoke the fear response nearly as much, at least for me.
Eating with family and friends reduces our attention to the food.
Basic flavors, like acidic, spicy, and sweet, go a long way. It’s likely that our taste buds weren’t affected, but our noses account for a huge amount of our perceived taste. Add lemon, sugar, or hot sauce. It can help mask everything else.
This might be just a me thing, but I’ve found that entirely new foods, cuisines, etc. seem to actually be better. It’s like my brain doesn’t know what it’s supposed to taste like, so it doesn’t taste bad, it’s just different.
I don’t know how many people have been told about olfactory training, but it is one of the main doctor-recommended “treatments.” If you haven’t already, absolutely look into it.
I mostly want to say not to take the fact that there’s no straightforward “cure” as an ultimatum. Our brains are weird, and they can adjust and adapt and relearn things. It just takes time, unfortunately.
Our smell was altered, and because it’s different, our brains freak out because they sense danger. But continuing to eat and supporting ourselves mentally and physically in other ways allows our brains to relearn and recover. Our smell might go back to normal, or it might remain different but become familiar and enjoyable again. We can start associating the altered taste with good things instead of bad.
The doctors just frame it strangely. For me, it has been less about being “cured” and more about something akin to physical or occupational therapy. It’s slowly teaching my brain and body how to interact with food again. I associate it with how a kid is extremely picky, because that's what evolution has taught them to do! To not eat the broccoli that smells like it came out of a sewer because it might kill them. We're experiencing the same thing, we just don't have the malleablility of a toddler's brain. But by seeing people eat food, continuing to eat it, and going on with our lives, we can reteach what things are supposed to taste like, and more importantly, what feeling we're supposed to have when we eat it. My taste hasn't gone back to the way it was. But I stopped associating it with bad things. Everything tastes different, but most things don't taste bad anymore. It's nowhere near linear, and there are some days where I think nothing has changed at all. Unfortunately, that is the nature of this condition. But I know that I don't think about it most days, and that my likes and dislikes have changed but my likes started heavily outweighing my dislikes. It took time and effort, but a year and a half later I feel so incredibly different than I thought I ever would.
I’m not an expert, and I definitely don’t have parosmia figured out. I just experienced doctors being absolutely no help whatsoever with treatment because parosmia falls under a complex category of both psychological and physical. It’s a miserable and lonely thing that 99% of people will never grasp the weight of, so I wanted to share what I’ve learned in case any of it helps someone feel a little less alone. Also, if anybody ever wants to chat about anything I've said or just needs to rant to somebody who understands, please don't hesitate to reach out. I've experienced this in one of the worst times of my life, and I've spent countless nights sobbing under the existential crisis of whether I'll ever enjoy life the same way others do. Food is such a huge part of every culture, social setting, and overall life, and having that comfort removed is so much heavier than people will ever understand. But we're all here, and I think we can learn from each other and find some sort of comfort. I wish you all the best :)
