Hi all,

Sorry you're going through this. I've been through a lot of things that are long term, and this is by far the worst. It isn't painful, it isn't necessarily uncomfortable (unless you're forcing yourself to eat things that trigger "The Smell"), it's just relentless.

I didn't realize how much I relied on meals to break up the day and just kind of relieve stress. Eating was a joy, I love flavor, I love mixing different flavors to find something that tastes EVEN BETTER (big fan of mixing barbeque sauce with whatever the restaurant's "special sauce" is for my chicken fingers, etc.).

Now eating is a chore. I dread meal time, I can feel myself getting hungry and I'm literally just eating to fill the stomach so I don't, like, die. Nothing has caused me more consistent, constant, unrelenting stress as this condition. So trust me when I say: I'm sorry you're going through this. It sucks so bad. You're not crazy, and anyone who tells you that you are needs to be educated or ignored.

Message me if you need to, I'm on reddit all the time and would love to figure this out with you, or just be there as support at minimum. If not me, then talk to SOMEONE, get someone who you can call and share your horrible experiences with, who at least attempts to understand (For all the men here: I've heard from several women that pregnancy anti-cravings are very similar to this, you might try that angle with someone to help them understand).

Regardless, here are all the things that I can and cannot tolerate:

The Good - Things that haven't changed and still taste good

• Every berry I've tried (including bananas), Pineapple, and Peaches. Grapes seem okay as well (only tried in a mix).

• Avocado.

  • This is huge. If you can tolerate Avocado I highly recommend it, as "fatty foods" in general tend to be a trigger, this is a good source of nutritious fat.

• Spinach

• Vanilla flavor.

• Almond Milk (Vanilla Almond Milk is great for me!)

  • Note that everything mentioned above thus far I put in a smoothie and eat as my main source of food these days. Spinach Fruit Avocado Vanilla Almond Milk vanilla-flavored protein powder. I use a 900W smoothie blender ('bullet-style') and it works great. I'm sick of smoothies, but for now it's working.

• Tabasco Sauce.

  • This is another 'trick' I've discovered that makes some of the "bad" stuff palatable: Drench it in something that is spicy. I think the vinegar flavor of the Tabasco helps as well. Chicken is pretty gross to me, but dipping it in Tabasco sauce makes it tasty again (though I have to deal with the overwhelming flavor of the Tabasco in the process).
  • At minimum it's a way to get in nutrition that you're otherwise missing. Try it out.

• Cinnamon: See Tabasco sauce, I can overpower "the smell" with cinnamon on things that make sense to use it on.

  • If you can tolerate Cinnamon, I highly recommend getting some Cinnamon gum to just soak flavor into your mouth if you need it.

• Mayonnaise. For some reason eggs trigger me but Mayo doesn't.

• Non-garlic, non-onion based pasta or pizza sauce (took forever to find).

• Plain flour tortillas. Just a cold tortilla from the fridge. If I try to heat it (even in the microwave) it goes gross.

• Butter

• Jam (Strawberry)

  • My current 'treat' that actually tastes like a treat, instead of garbage, is a flour tortilla with butter and jam, rolled up like a crepe. Find your own 'treat' that is just pure enjoyment, no nutrition. Nutrition is important but so is recreation and a 'break' from life.

• Most sauces seem okay, as long as they don't have heavy onion or garlic in them.

• Most sugar and diet sodas taste great.

The Bad - Things that are 'laced' with "the smell", but not overwhelmingly so, and I can tolerate if need be.

• All cold meats that I've tried: tuna, chicken, ham, hot dogs (chicken pork based).

• Rice and bread.

• Personal fruit pies. Like the pre-packaged, small pastries with fruit filling. The fruit filling is fine, the pastry portion has that "laced" flavor/scent.

The Ugly - Either tastes/smells absolutely awful, or the 'taste' lingers in my mouth and nose for hours upon hours.

• Juice. I've only tried Apple Juice (and not apples), so this might be specific to apples, I haven't bothered figuring it out yet.

• Anything roasted, toasted, microwaved, cooked or fried.

  • Meat, potatoes (french fries), bread, breading for meat, cereal, chips, popcorn, etc.
  • I can tolerate meat that is chilled after it's been cooked, but it's still gross.

• Eggs, including anything with eggs "baked into" them, like cookies.

• Garlic and Onion.

• Cheese.

• Chocolate. 😭

• Urine and Poop: My urine almost always smells absolutely awful, and my poop will be the worst smell imaginable if I ate a trigger food. Since I've been doing smoothies my poop smells fine. A little gross, but important to share without being embarrassed as it's relevant, I think.

• Axe "Phoenix" scent. It's been my go-to for both body wash and deodorant and now it smells like garbage. I don't know what 'notes' are in it that make it smell so bad, but my bath and body works body wash as well as my shampoo/conditioner are all fine. I got some new, different deodorant and it's fine as well.

• Tide "Clean Breeze" liquid detergent.

• Gasoline.

  • These three triggers are the only ones I've discovered that are not related to food.

• I haven't tried coffee because I can't drink it. I'm hypersensitive to caffeine, even a can of diet coke in the morning will keep me up at night. I had insomnia for years before I figured out it was because I was drinking caffeine.

  • Based on how many people can't sleep in this day and age, I would guess it's more common than we think, too.

This is as extensive as I could remember. I've likely missed some things. If your triggers are similar to mine, I'd love to hear what still smells/tastes fine for you, as I'm trying to expand my options!

What "the smell" is to me, and other symptoms, and when I had COVID

For me the smell is like what you'd expect to find at the bottom of a particularly gross garbage bag. Kind of the juice that collects at the bottom with some thrown-out raw meat, rotting vegetables, maybe some dirt or soil, etc.

Another way I've described it is if you got a small container, put some celery and other vegetables in it, filled it most of the way with water, then stuck an entire chicken bouillon cube in, and left it to ferment for a few months on your kitchen counter.

Neither of these are 100% accurate, because it's a smell I've never experienced before, it's just really gross. I can still taste the flavor of whatever food I'm eating, it's just "laced" with this smell, as if somebody cut a hole in a garbage bag and just kind of drizzled the juice on top of whatever I'm eating.

Some interesting things:

• When something triggers the smell, it doesn't make me nauseous, it gives me a headache right where my olfactory nerve is (just above the bridge of the nose). Actual garbage makes me nauseous, so this is kind of weird.

• I'm also regularly experiencing intense, painful pressure on my spine right between my shoulder blades, coupled with dizzy/foggy head. It'll happen multiple times per day. This happened during COVID as well. Frequently comes with a 'behind-the-eyes' headache as well.

• Frequently at night while trying to fall asleep, I will "jolt awake" as I'm drifting off. This happened during COVID as well.

I first noticed COVID symptoms the first week of November, I believe I caught it from my local gym in late October. I did not lose my sense of smell at any time. I recovered by the end of November, and was 'long-hauler' symptom free until early January, when my parosmia started up out of literally nowhere. I had just been gifted a slow cooker, and was cooking some chicken tikka masala (my favorite Indian dish) and noticed a peculiar smell while I was chopping the onion and then later when it was cooking. Sticking my head into the slow cooker I couldn't smell it, but the taste was "kind of" there when I ate it. From there it expanded to more and more items over a 2 week period until it stopped getting worse, but has also not gotten any better since.

If your symptoms are similar to mine, particularly never having lost your sense of smell, I would love to hear it and commiserate with you! The only stories I've seen from others (related to COVID) is that they first loss their sense of smell, then developed parosmia. I'd like to know I'm not alone!

Seeing some of your stories and that it's taken 4 months or more and now you're starting to get better has given me hope, but I'm also still scared I won't be able to enjoy my favorite foods for the rest of my life. Living "almost-vegan" even for a month and a half has been incredibly difficult.

Doctor Stuff

I've been to an ENT and a general practitioner, and below I list out what I've had done, and what they've said (this is not medical advice for you, I'm simply sharing my experiences and take no responsibility for consequences on your end (have to protect myself)):

ENT: Nasal scope, CT Scan, anti-biotic. Everything looked "fine". Anti-biotic did jack-diddly squat and had "the smell" to boot. Also gave me acid-reflux so that was fun. :/

GP: He has seen this many times, he said "this is 100% neural, but a neurologist will not be able to help you, because there's not anything he can do. This is on you and your body. Neural pathways take a long time to heal, if they ever do. Typically if this lasts longer than a year, it will be permanent." He went on to say that edge cases exist, but in general if it's longer than a year, it will just become a lifestyle change.

He also mentioned that Vitamin B12 (JUST B12, do not take an all-inclusive B-supplement, he mentioned B-6 can actually make things worse) can help repair nerve damage. From the research I've done, it has a hard time entering your system from your stomach, so getting a high-dose (I'm using 5,000 mcg) of it is advised. Apparently less than 5% of the dosage actually ends up in your system. The capsules that dissolve in your mouth have the highest efficacy, other than B12 injections.

He also mentioned that some people were reporting getting their smell/taste back after getting the vaccine, but said it's likely placebo effect. Still, he said as soon as my age group is given the okay, I should get the vaccine, if for no other reason that to protect against future infections.

• We had an extensive conversation about all the 'conspiracies' surrounding the vaccine, and he said they're all rehashed conspiracies from previous vaccines that have proven to be not true. Infertility isn't new, "government is spying on me" isn't new, drinking urine (yep) isn't new. Etc. Take that for what you will.

His only other suggestion was to maybe see a nutritionist so I can map out what my future looks like as far as food, to get all the nutrition I'm going to need.

I really hope this helped you in some way. Share your thoughts, concerns, ideas, and experiences below, please. I'd love to hear from as many people as possible.

Best of luck to all of you, I'm rooting for you! We'll get through this, even if "get through this" ends up meaning "live with it". :)