Monday, 5 January 2015

How to manage/survive your parosmia.

First of all, let me say I've been overwhelmed with the response to this tiny blog!  I've had emails from all over the world, and I've been very touched by some of the stories my readers have shared with me. Thank you so much for getting in touch, and I'm very glad some of you have found my blog posts helpful.  There are lots more posts coming now I've had my Christmas break, I promise!

With that in mind, today I'm going to attempt to answer the question I've been asked most in the emails, which has been "Have you found anything that helps?" Well, yes, I have.  A few, anyway, and I mention them here in the hopes that they'll help some of you, too.   I remember well the first time I saw my ENT surgeon and asked him if there was anything I could do to relieve my symptoms, as it was an incredibly bad day.  He just gave a mini-shrug and said "I'm sorry".  The simple fact is that there hasn't been much research into parosmic triggers, and therefore, there's not been much research into cures for them either.  I'll come back to that in another post, however.  For now, here's what's in my "Parosmia Kit" for bad smell days ...

First things first:

Even if nothing else on this post helps, or is practical, you must get one of these:
  
NeilMed sinus rinse kit, which is currently available from Boots for £12.99.  According to Dr Carl Philpott, the UK's leading dysosmia expert, rinsing your sinuses with saline is still the most effective treatment for various nasal issues, in particular dysosmic conditions. However, this is not to say they are a cure, but they can help, and, unlike drugs,or surgical interventions sinus rinses don't have any side-effects. Try and rinse once a day, every single day without fail.  You can rinse more often if you're having an incredibly bad smell day, at some points, I have found myself rinsing two or three times a day.  It won't stop the smells, but it can help soothe your inflamed nasal tissues.

I find tipping my head slightly forward, and to the side I'm rinsing helps too.  Please though, never ever try rinsing your sinuses with plain water.  They will BURN.  Your sinuses need the salt.  You can use a neti pot, too, but the squeezable nature of the bottle allows you more range to find a comfortable rinsing position.

I also carry a Sterimar Nasal spray (which is basically seawater in an aerosol) in my handbag, for when I need relief but it isn't convenient to do a full sinus rinse.  If you are taking nasal steroids, by the way, you may benefit from pointing the spray towards the inner corner of your eye, rather than straight upwards.  The olfactory nerve is just below the eye, and this will help you get your steroids where they need to be.  This is the single useful tip my ENT gave me, and he was right, it does make a difference.

Toothpaste:

I found switching to a cinnamon-flavoured toothpaste really helpful, as mint toothpaste was regularly making me puke.  Personally, I like Toms of Maine Whole Care in Cinnamon Clove, which I get from Amazon, but thanks to kindly in-laws and various amazing friends who have been to the US recently, I now probably have around a two year supply.  Unflavoured toothpastes for some reason didn't work, as the texture became very quickly unbearable, and the cinnamon flavouring overpowers the gag reflex for some reason.  I just wish non-minty toothpastes were more widely available in the UK, and ones aimed at adults, to boot.  I just can't face strawberry or banana kiddy toothpastes in the mornings!

Eating and drinking:  

One of the hardest to deal with parts of parosmia is that eating and drinking even the blandest of foods can be difficult, the distortions that come hand in hand with this condition mean that everything tastes "wrong" and some things can taste so wrong that they are nauseating.  Nonetheless, I have found some things that really help.

Hot Sauce

Basically, you need to become friends with spicy foods.  Spices, particularly hot spices stimulate the trigeminal nerve rather than the olfactory one, in effect causing a mild pain response rather than being an actual "flavour".  For parosmics, spices can "mask" the olfactory distortion and make previously unpalatable foods more acceptable. I carry a little bottle of Sriracha around with me at all times for food emergencies, but my favourite hot sauce of all time is actually the Lively Habanero Sauce (the yellow one below), which I always have had several bottles of on the go, even before my parosmia began. Luckily, this has barely been affected at all by my parosmia.  Find a hot sauce you like, and put it on everything.


Holy Lama Spice Drops

I have had trouble with tea and wine.  The two best drinks! Luckily, I found quite early on that cinnamon was a bit of a "superfood" for me, and so I've been adulterating everything with cinnamon ever since.  I had to swap normal tea for chai for a while, and I discovered Holy Lama spice drops quite by accident when putting together an online shopping order, and thought that the Tea Masala drops would be a great addition to my handbag parosmia kit

Just a drop, added to a "bad" cup of tea can make all the difference.  In fact, it worked so well I splashed out on the mulled wine drops, and the cinnamon drops for when I'm struggling with wine.  I like wine, but occasionally the woods the wine is aged in causes a parosmic reaction, and it's difficult to drink.  A drop of mulled wine spice, or cinnamon in a "dodgy" glass can make the wine seem more normal to a parosmic palate.  Of course, you can just drink mulled wine!  Or, gin.  Gin, being quite spicy in its own right seems to not be affected too much by parosmic distortion, which is great news! Well, it made me happy ...

Chocolate

Sadly, I have not found anything at all to make milk or plain chocolate palatable. I'm sorry.  I have tried!  White chocolate, however, does not contain cocoa solids (which appear to be the trigger), and, as such is edible.  I have a weakness for the occasional white chocolate Twix, but I'm deeply indebted to Rococo for inventing their White Chocolate Artisan Bar in Cardamom.  It has got me through many a chocolate-related crisis, when there is nothing else suitable.  I do still occasionally long for a really good cup of hot chocolate though, I admit.

Coffee.

Coffee is  ... unsalvageable.  Sorry.  Drink Chai instead. You know it makes sense.

Bacon

Bacon works quite well with hot sauce.  But I've found that fried halloumi can give you a similar salty-crisp effect if you slice it thinly enough, without the parosmic effect.  It's not the same though. I miss you, bacon!

Citrus juices.

Many things can be salvaged by the judicious application of a little lemon juice.  Chicken, potatoes, fish (although fish seems largely undistorted in my experience so far),  anywhere you think hot sauce might be too much, try a couple of drops of lemon juice instead.

Potatoes

Cooking potatoes with lemon can be really good - this is my favourite lemon-y potato recipe - but I've found that, nine times out of ten, I just have to suffer the muddy, dull, nasty flavour.  That or drown them in ketchup - for a parosmic, tomato ketchup can be a lifesaver, particular is there is a concurrent loss of smell, as it has four out of the five basic tastes (rather than flavour - more about taste vs flavour coming soon), sweet, sour, salty and umami, lacking only bitter. Heinz now make a ketchup with chilli.  I use a LOT of it.  

I have had better luck replacing potato crips, however, with tortilla chips, and lentil-based crunchy snacks.

Some (surprising) things that still taste "good":

Carrots
Raspberries
Gin.  (I may have mentioned this).
Citrus fruits - but not grapefruit.

Carrots and raspberries contain ionones.  I made an incredibly surprising discovery about ionones at the Osmotheque in Paris quite recently, which I'll go into more detail about in a couple of upcoming posts.  But for now, my vegetable of choice is carrots.  With everything.

Texture

Many parosmics are also smell-compromised (hyposmic), and this means we don't taste as well as we used to, in spite of the distorted effects we get from our malfunctioning olfactory nerve.  This means that texture is more important in our food than it would usually be, and certainly I find that if my food lacks a mixture of textures then I will struggle with it way before I have eaten nearly enough to assuage my hunger.

I have found these a godsend:

for adding a little crunch and texture, and interest, to my meals.  I carry a tiny pot of these around with me everywhere.  For pepping up a pappy sandwich, or just dropping a couple onto a bland meal, they're very good for breaking up a gloopy meal, without adding too much in the way of distorted tastes, such as would happen if I used potato crisps for example.

By the way, Mexican food generally has been revelation to me whilst I've been suffering from parosmia! The mixture of textures, the spicy flavours, and the freshness of the ingredients have all made eating Mexican food far more easy for me than any other cuisine by far.  Wahaca, always one of my favourite places to eat even before the parosmia kicked in, has been a lifesaver when I've been sick of the cooking smells at home, or just struggling to eat anything at all.  I can't express enough how great it has been to know there is somewhere where I can go and eat with very few problems.  I'd eat there everyday if I could.  Fish tacos - hold the black beans - for the win!

There are more things, and I'll keep you posted as they occur to me.  I have started a Pinterest board for my finds, which you can find here: Get Lippie Anosmia/Parosmia/Hyposmia, and I add to it quite regularly. But basically I carry at all times: hot sauce, cinnamon-flavoured gum, crispy onions and chai spice flavouring, which seems to cover most eventualities. 

If you have any other suggestions, or have any other triggers (what bothers me might not bother you, I'm aware), let me know in the comments or drop me an email, I'd love to hear from you!

6 comments:

  1. I completely understand what you are going through. I also had these symptoms for a full year after an awful cold, its taken a literal miracle that i no longer gag when eating or smelling food. I know that it doesn't help you that I fell sorry for you, but I really do. It was so depressing.

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  2. I completely understand what you are going through. I also had these symptoms for a full year after an awful cold, its taken a literal miracle that i no longer gag when eating or smelling food. I know that it doesn't help you that I fell sorry for you, but I really do. It was so depressing.

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  3. Some if my triggers are the same, some are very different. Coffee and tea are fine for me, but breads, tooth paste, bacon, strawberries, and most citrus are some of the worst offenders. I am going to go order that tooth paste right now. I had no idea they existed! Mexican food has been the safest choice for me eating out, it is nearly unchanged for me.

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  4. Some if my triggers are the same, some are very different. Coffee and tea are fine for me, but breads, tooth paste, bacon, strawberries, and most citrus are some of the worst offenders. I am going to go order that tooth paste right now. I had no idea they existed! Mexican food has been the safest choice for me eating out, it is nearly unchanged for me.

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  5. i also used neil med..suggested by my friend..everyday i pray to get back my sense of smell. lets pray together

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  6. I have been using the sinus rinse formula Alkolol. It has helped! Breathing cool air helps tame a bad episode. Some days are worse than others.

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