Tuesday, 25 November 2014

What is Parosmia?

So, I'm a couple of posts into the blog, and I realise that I haven't said what parosmia actually is.  Silly me. Here's the lowdown on a couple of olfactory conditions, and my experience of them. Incidentally, conditions affecting the olfactory nerve are generally grouped together under the term Dysosmia.  Therefore dysosmias include (but are not limited to) the following:

Anosmia: This is a complete inability to smell, and is probably the best-known (and certainly the best-researched) form of dysosmia. Causes can include head injuries, viruses including colds and flu, and chronic sinus disease, but a great many cases of anosmia are idiopathic, having no discernible cause whatsoever.  In the early stages, anosmia can often be mistaken for a taste disorder as the first symptom that a lot of people really notice is their food not being as flavourful as usual.  However, true taste disorders are rare, and I'll deal with this in another post. 

Perfume people often claim to be "anosmic" to one ingredient or another (usually musks for some reason), as a way of saying "I can't smell this particular ingredient", but this isn't actually a form of anosmia in the technical sense.  Before "The Honk", I was "anosmic" to a couple of ingredients, notably hedione, but as hedione doesn't actually smell of much in itself, being used to give a feeling of "light" or "airiness" to fragrances, it wasn't really that big a deal.

Fine Print: Please note - a great many cases of anosmia are congenital, meaning someone has never had a sense of smell develop at all. However, for the general purposes of this blog I'll be referring to acquired anosmia, unless specifically noted in the text. 

Hyposmia: If you're not totally anosmic then you are hyposmic.  Anosmia is the total lack of smell capability, whereas hyposmia is a greatly reduced sense of smell. If you think of smell capability as a volume control, then "normal" would be ten, and  anything below that ten would be hyposmia.  I'm currently around a three or a four. I can only smell through one nostril, and it remains to be seen whether I'll ever smell again through the other.  I may get to five, one day, and if I'm really lucky, I might even hit the dizzy heights of a seven or an eight, but it looks unlikely from here, right now. 

I was totally anosmic for several months earlier this year, and my sense of smell started to return after three months or so, which was thrilling - I could smell A*Men from across a room (not such a difficult feat, admittedly), and MrLippie was back to smelling like a giant Twix again, which is always fun - but ironically, that was when the real problems started. Read on ...

Phantosmia: Essentially, smelling things that don't exist. Nasal hallucinations, if you will.  I've spoken to a few people about this, but the main smell that people report are burning smells.  Lots of people report the smell of diesel, cigarettes and petrol.  Sometimes these smells can be so strong that the eyes and throats of sufferers will burn, as if the smell really exists. But it doesn't. 

In my case I could smell burning meat.  Specifically, that red-laquered, shiny char sui pork that you often see hanging in the windows of Chinese restaurants.  The burning-sweet stench - as if someone had taken a blow torch to a pork belly or two - would appear at random intervals with no warning whatsoever, and linger for hours.  And hours.  And days.  Nothing would make it shift, not even applying neat essential oils to both the inside and the outside of my nostrils.  I was quite lucky, this stage only lasted a couple of weeks, but it was pretty annoying whilst it was around.  But this brings me round to why the blog is here:

Parosmia: a distorted sense of smell.  Essentially: I smell funny. What might smell like a rose to you, or a violet, or a good cabernet will smell like sewage or rancid onions or metallic vanilla to me. According to my Ear, Nose and Throat surgeon ("ENT"), this is a sign that the olfactory nerve that was killed off after my cold earlier this year is now regenerating, and this is a good thing, therefore. However, my brain now has to "re-learn" how to associate the scent-memory of a stimulus to the stimulus itself, something it currently struggles with, hence the distortions.

What this actually means in practice is that everything I smell smells wrong (and bad).  Everything I eator drink tastes wrong (and bad) and, if you read my "Day in the life ..." post, you'll know that it also means is that some things I smell or eat/drink are so wrong (and bad) that it can make me ill.  I won't lie, and, without wishing to sound like a drama-queen, or like I'm attempting to write misery-porn, it's been hell.  Genuinely.  There's a saying "you don't know what you've got till it's gone", well I'd add to that "you don't know what you've got till it buggers off without warning, then returns three months later turning your life into an smelly nightmare and makes you sick every day" Yeah, yeah, melodrama, I know. Whoops.

Cacosmia: Exactly the same as parosmia only everything tastes and smells like shit. Literally. I had this for a time, it arrived quickly, and didn't last that long overall, but I genuinely thought I'd go insane during that time.  There was a moment or two when I simply didn't know how I'd carry on if life continued like this, but I did get past it, and now here I am boring the pants of everyone who will listen about how I ate a peanut today! Or status updates like: "Crisps, how I defeated my nemesis" on Facebook.  Victories possibly don't come much smaller than this, but I'm celebrating them anyway.  You can always put me on ignore.

Euosmia: More or less exactly the same as parosmia and cacosmia, but the distorted smells are pleasant.  Smells like cakes or flowers, or perfumes for example, but this is vanishingly rare.  I met a lady recently who had episodes of "lovely perfume" phantosmia for minutes at a time, but this is the only example I've come across.

I am not a doctor.  I repeat: I AM NOT A DOCTOR. I used to be a fragrance writer, and have had to put that on hold for the time-being. As such, my medical expertise is limited to knowing one side of a sticking plaster from the other, so please see a doctor, or check Fifth Sense, if you think you've been affected by anything mentioned in the foregoing post.

All of the above has been based on my personal experiences with the dysosmias mentioned, and (some of) the research I've been able to do on them, so far.  There basically isn't very much about parosmia around that I could find, and it frustrates me no end. I'm hoping, as I go on with this blog, to learn a hell of a lot more about the conditions I've suffered, and hopefully this will become a resource for other people who suffer too.  I recently had a rather "heated" exchange with a French perfumer about some of the myths surrounding anosmia, and I'll address some of those in a future post too. 

Thursday, 20 November 2014

A day in the life of someone suffering from parosmia

I have good smell days, and bad smell days.  Being a parosmic with a distorted sense of smell, I can usually tell what kind of day it is going to be by how the taste of my saliva is as soon as I wake up.  Just a hint of putrescence? Marvellous!  Like I have the worlds worst hangover and an African Elephant with Delhi Belly has had an unfortunate accident in my mouth?  Bad Smell day ahead!  Proceed with caution.

A bad smell day will mean that I have to watch what I eat for the rest of the day, as it is likely to make me feel ill no matter how hard I try to avoid my "trigger" ingredients. Triggers are the things that guarantee I will have a bad reaction to something, even on the loveliest of "Good Smell Days".  These include, but are not limited to:

Coffee: 

Put simply, the smell of coffee is the worst thing in the world. On a good smell day it might take on the character of burnt, but still strangely sharp garlic, with just a hint of sewage beneath.  On a bad smell day, coffee, even coffee on the other side of the office smells like something died in a sewage plant then was allowed to get damp and mouldy then used as a growbag for onions.  Most days, it's somewhere in between.

Cigarette smoke: 

I was never a smoker before, and I have always hated the smell of cigarette smoke (not good old rich pipe or cigar smoke though), associating it with ill-health and anxiety from a series of lung-related traumas in relatives of all ages when I was a child.  Now, however, the smell of cigarette smoke is sharp and acrid, not smoky at all, but chemical and offensive.  Again, however, with that irritating top note of strangely shrill garlic. Walking down a street filled with smokers who have been forced into the great outdoors can feel like being repeatedly like being punched in the face with a chemical-smeared boxing glove.

Oddly, I can only tell the difference between cigarettes and coffee once I can put the smells into context.  If I'm walking past a coffee shop, I'll know "my smell" (from this point onwards to be referred to as "The Honk") is most likely to be coffee.  If I'm walking past a pub, however, it'll be cigarettes.  If you were to stand behind me, with either a fag or a cup of hot coffee, the only thing I'd be able to register would be "The Honk", and not which "trigger" you were holding.  "The Honk", whilst it varies in intensity, and occasionally in form, is always just "The Honk".  Being able to recognise the ingredients that cause "The Honk" to come into being is an ability that has been taken away from me right now.

In a further oddity, smoked fish, cheese and ham are fine.  Well, not "fine", but fine in that they generally aren't "triggers".  Go you, stupid nose!

Bacon:

The day I realised I could no longer tolerate bacon was not a good day.  The smell of bacon frying is one of the greatest pleasures on earth (sorry, any passing people of a vegetarian persuasion, but it is). It's a sign that, no matter how bad your life is, how bad your day has been, at least there is going to be bacon in it. Bacon is a Good Thing. I love bacon.  Well, I did. 

I cried the day I "lost" bacon.  I cried hard, and I cried long.  I cried the way Adrian Mole did after the wind blew away his candyfloss in Cleethorpes.  It was not a good day. Even now, if I need to fake-cry, I think about the day I "lost" bacon.   Halloumi goes some way to making up for this loss, but frankly, it is NOT the same, and never will be.  RIP bacon.

Chocolate: 

Forgive me, but this will be both graphic, and disgusting.  Chocolate is, essentially, like chewing on a turd. You were warned, and I am sorry, but that is what it is like.  Unless it is white chocolate, that is, in which case it is like chewing on sugary lard.  Actually, that reminds me, they need to bring back White Chocolate Maltesers.  Malty lard for the win! 

Peanuts and Marmite:

See chocolate (above).  But, you know, savoury.  Peanut butter, I don't even want to think about.  I used to quite happily, as a child, sit and slowly suck all the marmite off a teaspoon.  Yes, it's fairly safe to think that I won't be doing that again any time soon.

Roast potatoes: 

I love(d) to cook.  I'm famous in several places (okay, three, but three is definitely several.  You can trust me, I am an accountant) for my roast potatoes.  I make them big, and crunchy and fluffy all at the same time, and now, to me, they taste like they are rotten.  Big, crunchy, fluffy rotten spuds.  all watery, covered in mould, and having grown roots worse than Tina Turner's frightwig. 

This also applies to crips and chips, and any other kind of fried potato.  I am Northern.  I am basically made of potato.  I miss potato.  Yes, I can still eat boiled potato.  But who wants to eat boring old boiled potato?  I suspect I could probably still eat mash, but as my husband obstinately objects to mash on idealogical grounds (no, I don't know why I married him either) mash is a forbidden substance in the Lippie household, and has been for a very long time now.

Gravy:

Did I mention that I'm Northern and essentially made of potato?  What goes better with potato than gravy?  Or, in my case, liquid sludge (see chocolate).  My nose hates me, and wants me to die.

Toothpaste:

I lack the words to tell you how bad minty toothpaste is.  It's bad.  It's really, really bad, and you seriously have no idea how bad it can be to find out that brushing your teeth to get rid of the taste of something that has made you feel sick is only going to make things worse. A lot worse.  Imagine if brushing your teeth every day made you vomit, and you still had to do it twice a day with the stuff that makes you vomit. That's about a tenth as bad as it actually is.  It's not good, and it gets worse because non-minty toothpastes are impossible to find.  I'd sell my left leg for a decent cinnamon toothpaste that I don't have to import from the US (and contains fluoride) right now.  I'm not even slightly joking.  Left leg, it was nice knowing you, but we're done. I need my teeth, dude.

Wine

Yes.  Wine. I'll be damned if I'm giving this up though. I have a theory - as yet largely untested because I can't seem to be able to read my handwriting after recent experiments for some reason - that it is oaked wines that are the worst for The Honk.  I'll keep you (and me, hopefully) posted. 

In the meantime, I'll drink gin instead.  I can't thank the gods of whatever religion you care to name enough that beautiful, spicy-cool, junipery, cardamom-y, soapy-coriander-y gin and refreshingly crisp and bitter quinine-ridden tonic water are, largely untouched by The Honk.  I am going to a gin festival in February, and I am planning on drinking ALL the gin.  Don't even bother buying a ticket for yourself, because all your gin are belong to me. Don't say you weren't warned.  Vodka tastes like cold sick, however, and you are welcome to it.  That isn't The Honk though, I just don't like vodka.


A good smell day is ones where these "triggers" will just make me feel a bit sick.  A bad smell day will make me puke on contact with any of them.  I can turn a bad smell day into a good smell day by avoiding all of these triggers (which essentially boils down to not leaving the house, and eating only non-scented white foods), but it's damn near impossible to avoid all of these smells - or tastes - every single day.

A bad smell day is one where the decision of what to have for lunch (I don't tend to eat breakfast with any kind of regularity) can make me cry.  Where the two minute journey to the supermarket (with the smokers in the street and the diesel fumes to contend with) to buy lunch can make me cry.  Where making the decision of what to buy IN the supermarket can lead to a frenzy of "will I be able to eat this? I DON'T KNOW!" conversations with myself can make me cry.  Where just the ambient smell of a supermarket will make me ill.  And cry.

Then there's the utter sucker punch of getting two bites into whatever (probably bland as heck) thing you eventually grabbed off the shelf in your hurry to leave the place and it makes you sick. You might not cry, but you'll definitely still be hungry.

An unthinking colleague in the office might put a cup of coffee on your desk and you'll have to move it away, explaining your "condition" once again, and you'll see people thinking you're either just just plain crazy, or pregnant and lying about it.   Hot soup in an office, by the way, eaten at your desk should be an offence punishable by hanging you up by your nostrils till you promise not to pollute the working environment with Eau de Honk ever again.

On bad smell days, ones where The Honk is strong, I worry sometimes that this will never go away, and I'll never be able to either eat normally again, or to be able to socialise properly ever again.  If someone in the office is wearing a perfume too strong, or has spent a little too long hanging with the smokers in their Siberia outside the building, that can ruin my whole day on a bad smell day. I won't be too happy about it on a good smell day, either, mind.  Being invited out for a meal is stressful, as I won't know in advance what I can or can't eat on any given day. And if the restaurant is a smelly one (a steakhouse with a smokey grill, say), then I'm just going to be uncomfortable no matter what my nose dictated I was going to have that morning, regardless.

The quality of my days is no longer predictable, and is entirely dictated by the whims of my peculiar and infuriating nose.  My parosmia has caused me to lose some of the control of my life in a baffling and surreal way, and sometimes, I struggle.  It's frustrating, and annoying, and most of all it's BLOODY STUPID.  And that in itself is frustrating and annoying and ... well. I'm sure you get the picture.

That said, I have come up with some quick-fixes, and I'll talk about those in another post: "How to survive a day with Parosmia".

Sunday, 16 November 2014

I've started this blog a million times ...

In the six months since I lost my sense of smell (and particularly in the three months since it started to return in a way that's turned my life completely upside down), I've sat down to write about my life with my new disability many, many, many times, and I've scrapped every single piece (bar two, which you can read here, and here). 

Why?  I'm not entirely sure.  But I had an epiphany recently.  In a small way, admittedly, but still. Basically,  I've noticed that there is incredibly little writing on the actual experience of being a parosmic, there are very few anosmia memoirs too (the most notable is by Molly Birnbaum who wrote "Season to Taste" a few years ago, more about that in an upcoming post) come to that, but I also noticed that there is very little written about parosmia - and its sister condition phantosmia - anywhere.  Even in Avery Gilbert's magnificent book on the olfactory system: What the Nose Knows: The Science of Scent in Everyday Life, parosmia rates barely a mention outside of one sentence where it mentions that cacosmia is worse.  Which it is, but ... oh well.

So, what the hell is parosmia, anyway?  If you've spent any time reading perfume blogs over the last few years, you may be familiar with the term "anosmia" which, medically speaking, is a total loss of the sense of smell.  If you're anosmic, you can't smell anything at all.  Not burning, not coffee, not your baby's head, your lover's feet, nothing.  At all.  

However, parosmia is where you can smell "something" (anything), but the signals from your olfactory nerve get scrambled by the area in your brain that deals with scents, and the brain no longer recognises what you're smelling as a result.  This can lead to olfactory "illusions" such as food tasting and smelling putrid, or rotten, or of sewage. In particular, people have problems with coffee, chocolate, and cigarette smoke.  I also have problems with nuts, bacon, potatoes, marmite, wine, chicken. Several other things, I can't remember right now, also.

In general (and in brief), every single thing I eat, drink or smell tastes or smells slightly bad, but when I encounter any of the above, it can be instantly nauseating.  It's exhausting.  Nothing tastes or smells like itself, and I never know when I'm going to encounter something that makes me feel ill.  I'm constantly hyper-aware, and boy, there's only so much of that a body can take, to be honest.

Ostensibly - according to my ENT surgeon - my parosmia should be taken as a positive sign, in that it could mean that my olfactory nerve is regenerating, and as time goes by it'll get better and better. But, as it was caused by nerve damage (I had a cold back in May, and haven't smelled anything "good" since) recovery will be ... unpredictable.

Well, this wasn't the blog post I settled down to write a couple of hours ago, but I'll figure out where this thing is going as it goes along, I guess.  Hopefully it'll be useful to other sufferers out there, one day, but in the meantime, as with my parosmia, it is what it is.