Loss of smell may be an early sign of brain diseases

I had somewhat similar experience. It wasn’t until I was around 16 that my parents raised concerns. It came to light for me with my parents coming home and freaking out because I had apparently bumped the stove while they were out and accidentally turned on the gas burner and the entire house apparently smelled of something but I was relaxing in my room without a clue. My parents initially freaked out but later my step dad shared another incident where I had been working on something in the garage and there was gas can that had been tipped over and the whole garage smelled of gas and I had no idea. For the garage incident I could tell something was off around me like spider senses tingling but I couldn’t tell what it was exactly.

I had a friend who couldn't really smell until he got some kind of olfactory surgery. Before the surgery he felt like maybe he was missing out on some stuff like certain tastes or smell experiences (and he had a similar "immunity" to stinks). After the surgery he could smell to some degree and while it was a novelty he didn't feel like it really opened him up to a whole new set of experiences and was a bit underwhelmed. He was more thankful for the ability to breathe through his nose. I think smell is way less impactful than sight or sound, if that makes you feel any better.

My mother went her entire 59-year life without a sense of smell. She heavily leaned on my dad to check if the meat was off, if the house smelt before guests arrived, etc. But overall, I felt it was somewhat of a superpower. Who wouldn't love to say they have never experienced the smell of a poorly maintained public toilet or someone else's fart?

She spent about a decade of her life trying to find solutions before giving up and just living with it.

FWIW you mostly can’t smell yourself the same way other smell you. So even if you did stink, you wouldn’t normally notice.

When people smell their pits, they can tell when it stinks, but they have to really get their nose in there, whereas other people smell you from 10 feet away.

33 years old and I have had this issue for as far as I remember.

As for hygiene, I learned about that late (thanks to a boss who had the courage to speak to me about it), and now I just strictly follow the same daily routine. No more being complacent with showering, and I always wash my clothes every day regardless.

It worked well so far. But when it comes to changing the bed sheets or cleaning the toilet, I tend to let my wife handle it. Because smells does not mean anything, so for me as long as it is white and without stains, it is clean.

That said, I noticed lately that I sometimes actually smell things, but it is very random and episodic, like a few seconds every few weeks or so. So now I am wondering what is actually going on and if that may be curable in my case.

I lost 90% of my smell due to a traumatic brain injury (including face/nose damage), so I've lost the ability to smell nuanced things and taste subtle flavors.

It was hard at first, but I've since coped by using things with strong smells that I can still recognize. Coffee, lemon, copious amounts of cumin and parmesan, cinnamon, vanilla, etc.

What's interesting is that I can still "remember" the original smell, but it doesn't smell the same anymore.

As far as personal hygiene/cleaning...I kind of just gave up on it. I don't really care if someone tells me I smell. That's a them problem now, and I have much worse things to worry about after my brain injury.

No need to be anxious. Just use soap and water and you're fine. I personally use fragrance-free soap.

And above all, please don't overcompensate and become one of those people who drenches themselves in perfume and air fresheners thinking people like it. They don't and there is a reason why you see signs at hospitals and schools saying to please not use that stuff.

Same experience here. I can once in a while smell things, but it doesn't last long, and I can't correlate the smell a perfume is supposed to represent to what it actually represents (so, a perfume that smells like roses smells like something, but I can't correlate it with the actual smell of roses, because I don't know how they smell). There are some smells that are quite strong and I can identify, like alcohol, fuel, acetone, but I wonder if what I call 'smell' in those cases is just a chemical reaction you get from the abrasive? properties of those things, rather than actual smell.

I cope with it in my own case by being thorough in my own cleanliness - I shower and use perfume (three sprays!) every time I have to leave my house. For other things I rely on my SO.

I'm a bit of a hypochondriac but I've lived like this for 30 years so I guess if I was having some kind of mental degradation it would have been noticeable already!

I was similar to you (maybe not to that extreme) and I don't see zinc mentioned in this post.

I did have a minimal sense of smell, as in I could faintly smell perfumes if I sprayed it on my nose but often not animal feces or similar.

I started supplementing zinc because I suspected I was deficient in it and in about two weeks of taking 25-40mg per day (be careful, 40mg is the upper limit) I started smelling things properly.

It got to a point now after a few years that I can tell what happened in a room in the previous 30 mins when I step in.

There are upsides (smelling the sea) and downsides (dirty humans are truly something) but I love every minute of it.

> what makes a perfume smell "good"

Which is very subjective. I personally can't handle it, in the past I've even got headaches just from a couple perfume bottles standing around in the same room. I had to get rid of a perfumed shaving soap because it was a guaranteed headache and smelled like a chemical plant to me, while others just shrugged and said it's fine.

Congenital absence of smell is a medical issue, and you may want to consider speaking to a physician.

For example: it can be caused by Kallmann syndrome, which is associated with other midline defects, especially of the hyothalamus (delayed puberty) or palate (resulting in a cleft). It can affect the eyes, ears (hearing loss), and kidneys.

I lost my sense of smell temporarily because of a Covid infection, and it was gone completely - I could stick my nose into a jar of ground coffee and not smell a thing. Funnily enough, they say that if you can't smell, your sense of taste is also impaired, but I could taste food just fine...

My sense of smell is weak, my SO's is particularly strong.

Net effect is that we eat different things, because I like "garbagey" tastes like seaweed, anise, liquorice, anchovies etc. and she can sense if dairy or fruits/vegetables will give her food poisoning past expiration date.

As for hygiene I stick to a routine and rely on other senses - if I'm feeling sort of sticky then it's definitely time to bathe.

I wasn't born with it, but after catching Covid my sense of smell got for lack of a better term "muffled". Some things merged together. I could still "smell" shampoo and hand sanitizer, but they smelled identical to me and unlike either what they used to smell like or anything I could really place. There were quite a few times when I'd smell something and have no clue what it was because the scent was unlike anything I'd ever smelled before. During that time I was definitely self-conscious about how I might smell because I just couldn't tell.

Since then I think it's mostly recovered. Things smell how I think they should most of the time. But I always wonder if there's something out there that I'll smell completely "wrong" some day because the receptors for that particular smell just never recovered.

I don't have any personal experience with this, but Simon Tatham (creator of the PuTTY SSH client) has written about having anosmia: https://www.chiark.greenend.org.uk/~sgtatham/smell.html

Yeah, same thing for me. I was probably 20 or so when I really understood that I had no sense of smell. It was much later when I realized that this was a gap in my version of human experience. As these things go it seems like not much of a disadvantage though.

I got extremely sick in 2017 for about a week. Went through about 6 boxes of tissues in that short time period and was barely able to feed myself. Only months after when someone was vaping near me did I realize I wasn't able to smell.

Only after a few years after long and intense cardio I would sometimes regain some sense of smell for about 20 minutes. Now in the last month seems to be coming back more permanently.

I'm someone who spends a lot of money on expensive perfumes like Creed and regularly burn incense in my house.

I honestly didn't feel like I was missing out on much with no sense of smell, definitely did not feel like I was missing 1/5th of the human experience. It really didn't bother me and I never went to a doctor for it. That said, I'm glad the sense is slowly coming back again.

Couldn’t smell much of my life. Later on got diagnosed with autoimmune Sjogrens. Seems like it could be related.

https://creakyjoints.org/living-with-arthritis/symptoms/sjog...

Much later in life I got migraines really bad. During which all my senses went into overdrive. Sense of smell was vastly better than those around me.

After covid I lost my sense of smell, and for almost 2 years my smell only recovered to about 5% of my original.

Honestly, I thought about it and I'm perfectly fine not being able to smell for the rest of my life. On the flip side, I'm actually happy I'm not impacted by unwanted smells in my environment.

Having smelt before, I don't miss it, but if I was born without it I would always wonder. Well let me tell you there's not much to miss.

Not being able to smell sucks. I was able to smell for the first 20+ years of my life and then lost it.

After years of going to doctors getting treated for polyps and allergies and all kinds of things I was diagnosed with Samter's Triad.

I know you have this since birth and it most likely is not what you have, but other people with similar symptoms may want to look into that, because not many doctors that I came across knew this.

How is your sense of taste? Sensitive or no?

I use fragrance free soap and cedarwood scented body wash and deodorant. As long as you're clean you should be fine. It's not something you have to worry about if you practice basic hygiene.

Smell and taste are very intertwined. I wonder if your taste is very subdued as well. When I had covid, I couldn't smell anything, and eating a world class meal may have just as well been some cardboard...

Since you don’t have a sense of smell, have you wondered if perhaps one of your other senses is enhanced in some way from using the spare brain matter? Do you have synesthesia?

Luckily most people can't tell if they smell (unless it's really bad). We typically rely on cues from those around us if were bathing right!

You have smell blindsight. Your subconscious can smell, but your aware part can not?

I knew a pair of brothers with no sense of smell. Probably genetic for them.

Does your lack of smell extend to a lack of taste, as well?

Maybe it's related to the brain damage part: COVID didn't just kill my sense of taste and smell, but changed how I perceived touch too. Touch on my skin felt like I had a thin layer of something on my skin, even my teeth. It went away the same time I recovered my taste and smell. https://twitter.com/esesci/status/1608553863937921025?s=20

I didn't notice anything unusual about my hearing though.

For myself and several friends who started with poor senses of smell, covid boosted our sense of smell for a brief time after having it. My smell was easily 5x as sensitive for a month after having covid the first time. Now it's back to baseline.

This isn't that surprising, is it? Influenza can do the same thing.

No, it didn’t get into the brain and cause damage in the brain, it it affected the cells around the olfactory nerves.

https://www.forbes.com/sites/williamhaseltine/2022/02/14/los...

My father lost his sense of smell due to Covid and it never really came back entirely, he always complains that his food tastes nothing these days.

I had phantosmia three times following COVID. Cigarette smoke each time. The first time lasted nearly a month and was very intense, with the subsequent instances lasting for shorter intervals and not being as intense. I was worried for a minute there that it was my new normal but I'm happy to report I haven't had any further instances in nearly 2 years. It was wretched.

My dad could not smell for a few years in his 50s - he has Parkinson's disease now, which started (noticeably) about 20 years later.

It seems to be subjectively quite awful (depression-like symptoms, difficulty walking - sports was a big part of his life) but at least I can still talk to him like an adult - it's not a proper dementia.