Losing your sense of smell
Discussion
After suffering years of a blocked nose, I began to rely on decongestant sprays, which did the job and kept me clear for eight hours at a time, allowing me to function properly and get a decent night’s sleep, without waking up with a ragged, sore throat.
Whether the spray was the cause or not, I may never know, but just over two years ago my sense of smell faded and disappeared altogether, and it has never returned. Around that time I went to my doctor, who referred me to a specialist, and last March I underwent an operation to clear and drain the sinuses, and remove the beginnings of polyps.
Whilst my breathing has improved naturally and without the aid of any medication, my nose is now producing loads of thick mucus, which I can cope with; what’s depressing me, though, is the loss of smell & taste, and the ever-increasing fear that it may never return. As one who enjoyed cooking and good food, eating is now just a means to an end. If my wife fancies a restaurant meal, I encourage her to go with friends, because for me a quality meal would just be a waste of money. I can’t even tell the difference between tea and coffee, beef and lamb, lemonade and cola. If my house was burning down I wouldn’t smell the smoke. All life’s pleasant (and unpleasant!) aromas are now just memories.
There is an established support network out there for the blind and deaf, but very little for anosmia (the official name for this condition) sufferers. I came into this world with five senses, and two of them have disappeared. My surgeon was dismissive of the problem, to the point of being unsympathetic.
Has anybody out there had a similar experience to mine, and if so, how do you cope? Is there any medication or treatment that may help me?
Thank you.
Whether the spray was the cause or not, I may never know, but just over two years ago my sense of smell faded and disappeared altogether, and it has never returned. Around that time I went to my doctor, who referred me to a specialist, and last March I underwent an operation to clear and drain the sinuses, and remove the beginnings of polyps.
Whilst my breathing has improved naturally and without the aid of any medication, my nose is now producing loads of thick mucus, which I can cope with; what’s depressing me, though, is the loss of smell & taste, and the ever-increasing fear that it may never return. As one who enjoyed cooking and good food, eating is now just a means to an end. If my wife fancies a restaurant meal, I encourage her to go with friends, because for me a quality meal would just be a waste of money. I can’t even tell the difference between tea and coffee, beef and lamb, lemonade and cola. If my house was burning down I wouldn’t smell the smoke. All life’s pleasant (and unpleasant!) aromas are now just memories.
There is an established support network out there for the blind and deaf, but very little for anosmia (the official name for this condition) sufferers. I came into this world with five senses, and two of them have disappeared. My surgeon was dismissive of the problem, to the point of being unsympathetic.
Has anybody out there had a similar experience to mine, and if so, how do you cope? Is there any medication or treatment that may help me?
Thank you.
I had something similar happen to me. Around 3 years ago over the course of 3 days I went from normal taste and smell to very distorted sense of taste and very reduced sense of smell. The only things that tasted normal were very strong savoury tastes like salt or vinegar. Everything else pretty much tasted the same which was a strange taste I had never before experienced. The worse thing being that sweet things tasted bitter or sour and were really unpleasant. My smell did still work but was so insensitive that I generally couldn't smell anything until literally sticking it right under my nose and if it wasn't a strong smell I often still couldn't smell it.
Doctors and consultants had no idea what happened, guess was some sort of virus may have damaged the nerves and eventually an MRI scan suggest that the outside of my sinuses seemed hardened and could perhaps be restricting airflow but still no real idea. For the past 3 years I have been on a daily steroid nasal spray and have intermittently had steroid tablets. There is a noticeable improvement when taking the tablets but I can't stay on them very long.
In the past 6 months though my taste has started to return to the point that I would guess it is somewhere around 80% recovered. Around 2 years ago chocolate would taste disgusting to me but today I can actually enjoy it although it is maybe not quite so nice as it used to be. It's very hard to say whether the steroid nasal spray had had any affect in improving it but I don't really want to stop taking it incase it starts to go again and takes much longer to return. My consultant however did tell me if the nerves had been damaged it could take around 3 years to repair themselves, coincidence or not I don't know.
I know what you mean about eating out etc though, for the first couple of years I had the same thing. What's the point of spending money on any nice food as you won't enjoy it and in my case desserts etc I would rather avoid as they were unpleasant.
Doctors and consultants had no idea what happened, guess was some sort of virus may have damaged the nerves and eventually an MRI scan suggest that the outside of my sinuses seemed hardened and could perhaps be restricting airflow but still no real idea. For the past 3 years I have been on a daily steroid nasal spray and have intermittently had steroid tablets. There is a noticeable improvement when taking the tablets but I can't stay on them very long.
In the past 6 months though my taste has started to return to the point that I would guess it is somewhere around 80% recovered. Around 2 years ago chocolate would taste disgusting to me but today I can actually enjoy it although it is maybe not quite so nice as it used to be. It's very hard to say whether the steroid nasal spray had had any affect in improving it but I don't really want to stop taking it incase it starts to go again and takes much longer to return. My consultant however did tell me if the nerves had been damaged it could take around 3 years to repair themselves, coincidence or not I don't know.
I know what you mean about eating out etc though, for the first couple of years I had the same thing. What's the point of spending money on any nice food as you won't enjoy it and in my case desserts etc I would rather avoid as they were unpleasant.
In october 2005 I caught quite a nasty cold, it took ages to clear and subsequently left me with pretty much no sense of smell or taste and a chronic rhinitis and episodic painful sinusitis. It has been like that pretty much ever since, with a combination of strong antihistamines and nasal drops the rhinitis is fairly well controlled. I spoke to an ENT doc a few years ago, who offered surgery, but whilst I was not suffering pain from the sinuses at the time and he couldn't say it would be a one off fix, I decided to hang fire.
In 2010 I drove 200 miles in a car with a fuel leak - I had no idea, but wondered why I had had to stop for fuel 50 miles before I expected to!
For some reason I regained my sense of smell and to a lesser degree taste for most of 2012/13, but picked picked up a cold last winter and its gone again, with just the odd day when I can taste some things - oddly I can usually taste artificial sweetners when they are present
In 2010 I drove 200 miles in a car with a fuel leak - I had no idea, but wondered why I had had to stop for fuel 50 miles before I expected to!
For some reason I regained my sense of smell and to a lesser degree taste for most of 2012/13, but picked picked up a cold last winter and its gone again, with just the odd day when I can taste some things - oddly I can usually taste artificial sweetners when they are present
When my nose started blocking I did think it could be an allergy, and racked my brain to think what might be the cause; by a process of elimination I ruled out chemicals, pollen, pet hair, the wife's perfume etc. etc. There was simply no logical explanation, and no other side-effects (sneezing, sore eyes & so on).
One of the causes of a blockage is the expansion of the tiny blood vessels up the nose; the oxymetazoline spray I used works by constricting those vessels and restoring normal airflow. The instructions on the box say you shouldn't use these sprays for more than seven days; I used them as required, on and off, for a number of years, because they were the only thing that worked...
After my operation I was prescribed an anti-inflammatory spray, but it had no positive effect whatsoever.
The fact is that there are a lot of mysteries surrounding the senses, especially smell/taste. Doctors don't really know how they work, and they don't know if they can fix them when they break down. It seems to be a matter of luck if some people regain their sense, and some don't.
One of the causes of a blockage is the expansion of the tiny blood vessels up the nose; the oxymetazoline spray I used works by constricting those vessels and restoring normal airflow. The instructions on the box say you shouldn't use these sprays for more than seven days; I used them as required, on and off, for a number of years, because they were the only thing that worked...
After my operation I was prescribed an anti-inflammatory spray, but it had no positive effect whatsoever.
The fact is that there are a lot of mysteries surrounding the senses, especially smell/taste. Doctors don't really know how they work, and they don't know if they can fix them when they break down. It seems to be a matter of luck if some people regain their sense, and some don't.
Have you had your testosterone levels checked? There's some suggestion and my own experiences support it that sense of smell is mediated by testosterone levels. I believe that a simple global testosterone level test isn't sufficient and that you need to establish levels of free and bound testosterone. Do you have any other symptoms that might be indicative of low testosterone levels?
Plastic chicken said:
Has anybody out there had a similar experience to mine, and if so, how do you cope? Is there any medication or treatment that may help me?
Thank you.
My niece had to have several operations on her ears, and she lost her sense of taste completely . The surgeon warned her beforehand it was a possibility, and he was right. Smell I could live without, but taste, no, I'd hate that. Thank you.
She is also 80% deaf and registered as 'disabled'. She's just 18.
Slightly OT, but while on a course of steroids to reduce inflammation my sense of taste went haywire, I couldn't stomach anything sweet at all and everything tasted really bland; I could differentiate between foodstuffs but eating became a bit of a chore as there was no pleasure to be had. On the plus side I lost weight! 
Oddly enough, although the pleasure of eating is severely reduced, I'm actually eating much the same as before, which is good as I'm pretty slim anyway & can't afford to lose any weight.
I don't believe the problem is linked to abnormal testosterone levels, nor is it psychological; it's real - almost as if the connection between nose & brain has been severed.
Thank-you all for your input & experiences..keep it coming.
I don't believe the problem is linked to abnormal testosterone levels, nor is it psychological; it's real - almost as if the connection between nose & brain has been severed.
Thank-you all for your input & experiences..keep it coming.
This website might provide some help. Created by an ENT surgeon i used to work with.
http://www.fifthsense.org.uk/support/
http://www.fifthsense.org.uk/support/
I suffer from the same thing. I suffered from allergies for as long as I remember and I also wonder if the nasal sprays I used to treat these contributed to the condition I have now.
I've had no sense of smell and a much-diminished sense of taste for about 9 years.
Polyps on the lining of my sinuses are the root cause of my issue. I've undergone surgery twice - the first was unsuccessful, but the second (different surgeon) was much better. My breathing has been much better since, but I only regained my sense of smell for a few weeks before it was lost again. This was due to the polyps returning, though my surgeon suggested that this slows with age, so further surgery might be beneficial as one gets older.
If you have polyps, then removing them would no doubt help for a while at least. Traditional endoscopic procedures are usually used to perform this, but if you revisit an ENT specialist, perhaps mention this relatively new procedure to them 'Ethmoid Stratus Spacer'. Some details here http://www.chatrath.com/sinuplasty.html Unfortunatley, it wasn't available on the NHS when I last underwent surgery (4 years ago), but things may have changed and it could be done privately if that's an option available to you.
Also, are you taking any medication now? Flixonase has helped me control the mucus that the polyps cause, and Neilmed nasal irrigation kits have been helpful too.
And yes, it is miserable isn't it!?
I've had no sense of smell and a much-diminished sense of taste for about 9 years.
Polyps on the lining of my sinuses are the root cause of my issue. I've undergone surgery twice - the first was unsuccessful, but the second (different surgeon) was much better. My breathing has been much better since, but I only regained my sense of smell for a few weeks before it was lost again. This was due to the polyps returning, though my surgeon suggested that this slows with age, so further surgery might be beneficial as one gets older.
If you have polyps, then removing them would no doubt help for a while at least. Traditional endoscopic procedures are usually used to perform this, but if you revisit an ENT specialist, perhaps mention this relatively new procedure to them 'Ethmoid Stratus Spacer'. Some details here http://www.chatrath.com/sinuplasty.html Unfortunatley, it wasn't available on the NHS when I last underwent surgery (4 years ago), but things may have changed and it could be done privately if that's an option available to you.
Also, are you taking any medication now? Flixonase has helped me control the mucus that the polyps cause, and Neilmed nasal irrigation kits have been helpful too.
And yes, it is miserable isn't it!?
The surgeon who operated on me prescribed Nasonex, which I'm using to little or no effect thus far.
My sister had polyps (do they run in the family?), and her nose became totally blocked all the time, like she had a permanent cold. When she plucked up the courage to have the operation it was a revelation; her breathing improved 100% and her smell/taste returned almost immediately.
In my case I don't think polyps are the main problem, because most of the time my nose is, and was quite clear, at least during the day. At night I'll often wake up mouth-breathing with a sore throat. I'll go to the bathroom, spray clean water up the nose, give it a good blow, and that seems to clear it for a while.
No smell/taste is a bummer at any time of year; it's especially frustrating just now because every time you turn on the telly there are adverts for Xmas food/perfume/aftershave etc....either that or it's cookery programmes...bah!
My sister had polyps (do they run in the family?), and her nose became totally blocked all the time, like she had a permanent cold. When she plucked up the courage to have the operation it was a revelation; her breathing improved 100% and her smell/taste returned almost immediately.
In my case I don't think polyps are the main problem, because most of the time my nose is, and was quite clear, at least during the day. At night I'll often wake up mouth-breathing with a sore throat. I'll go to the bathroom, spray clean water up the nose, give it a good blow, and that seems to clear it for a while.
No smell/taste is a bummer at any time of year; it's especially frustrating just now because every time you turn on the telly there are adverts for Xmas food/perfume/aftershave etc....either that or it's cookery programmes...bah!
This is really interesting - I lost my sense of smell around 6 years ago, but somehow can still taste stuff ok. Pretty sure the sensitivity of my sense of taste isn't what it should be, but thankfully food still tastes like it should. Can't even remember it going - just remember thinking one day that I couldn't smell something that should have been really strong.
I never even thought that it might be a psychological issue, and none of the people I've seen about it have mentioned that. I've had an MRI and a camera up my nose to make sure everything is as it should be, and apart from a little scarring in my nasal cavity (no idea what that could have been caused by, and no explanations were offered) they said everything is normal.
The testosterone thing could also be worth looking into but having googled the signs of that I don't think that one applies to me.
I never even thought that it might be a psychological issue, and none of the people I've seen about it have mentioned that. I've had an MRI and a camera up my nose to make sure everything is as it should be, and apart from a little scarring in my nasal cavity (no idea what that could have been caused by, and no explanations were offered) they said everything is normal.
The testosterone thing could also be worth looking into but having googled the signs of that I don't think that one applies to me.
My son, 19, has no sense of smell. Investigations when he was younger showed he had no olfactory bulb. It's just not there, never developed. So he had nothing, ziltch. Doesn't seem to affect him day to day. He showers every day and is quite obsessive about having clean on clothes, as he knows he can't tell if they smell.
He always says he'd never have a gas cooker or fire when he lives in his own place, just in case he leaves them on. My biggest concern for him is not smelling burning or similar. But compared to blindness, deafness, etc, it's hardly a big deal.
He always says he'd never have a gas cooker or fire when he lives in his own place, just in case he leaves them on. My biggest concern for him is not smelling burning or similar. But compared to blindness, deafness, etc, it's hardly a big deal.
TwigtheWonderkid said:
My son, 19, has no sense of smell. Investigations when he was younger showed he had no olfactory bulb. It's just not there, never developed. So he had nothing, ziltch. Doesn't seem to affect him day to day. He showers every day and is quite obsessive about having clean on clothes, as he knows he can't tell if they smell.
How do you explain 'smell' to someone who has never been able to smell anything? Must be like trying to explain a beautiful sunset to a person blind from birth.King Herald said:
TwigtheWonderkid said:
My son, 19, has no sense of smell. Investigations when he was younger showed he had no olfactory bulb. It's just not there, never developed. So he had nothing, ziltch. Doesn't seem to affect him day to day. He showers every day and is quite obsessive about having clean on clothes, as he knows he can't tell if they smell.
How do you explain 'smell' to someone who has never been able to smell anything? Must be like trying to explain a beautiful sunset to a person blind from birth.ode said:
This is really interesting - I lost my sense of smell around 6 years ago, but somehow can still taste stuff ok. Pretty sure the sensitivity of my sense of taste isn't what it should be, but thankfully food still tastes like it should. Can't even remember it going - just remember thinking one day that I couldn't smell something that should have been really strong.
I never even thought that it might be a psychological issue, and none of the people I've seen about it have mentioned that. I've had an MRI and a camera up my nose to make sure everything is as it should be, and apart from a little scarring in my nasal cavity (no idea what that could have been caused by, and no explanations were offered) they said everything is normal.
The testosterone thing could also be worth looking into but having googled the signs of that I don't think that one applies to me.
I have a very weak sense of smell for most things but a decent sense of taste. I never even thought that it might be a psychological issue, and none of the people I've seen about it have mentioned that. I've had an MRI and a camera up my nose to make sure everything is as it should be, and apart from a little scarring in my nasal cavity (no idea what that could have been caused by, and no explanations were offered) they said everything is normal.
The testosterone thing could also be worth looking into but having googled the signs of that I don't think that one applies to me.
It was never great even when young and then disappeared over my late teens and early twenties but i just put that down to my use of recreationals and never looked further.
Mostly i take it as a bonus, if something smells very strong i can still detect it, but i never get issues with bad smells as they are never that overpowering to me.
I often notice something smells because you can almost taste it at the back of your throat first and then if i concentrate i can pick it up.
Thinking i might mention it next time i see the doctor having read some of this.
TwigtheWonderkid said:
Quite. He doesn't understand what it's like at all. It's like some kind of mystical power to him, that we can know bacon is being cooked before it's dished up!
That is unfortunate, but quite amusing.
Incredibly, after four years my sense of smell (& along with it, taste) has returned!
Around six weeks ago I thought I got a whiff of the toast I was making; a day or two later I detected the air freshener in the loo, and since then it's just got better and better, so now my smell is at around 80% much of the time. Food has never tasted so good!
I can't explain why it's come back, except that I read about the possible benefits of zinc as a supplement and started taking one-a-day tablets a couple of months ago, more in hope than expectation. Coincidence? Maybe, but I'll carry on taking the zinc just in case!
I really had almost given up all hope of smelling/tasting anything ever again; this post is a message to all fellow anosmia sufferers - keep the faith.
Around six weeks ago I thought I got a whiff of the toast I was making; a day or two later I detected the air freshener in the loo, and since then it's just got better and better, so now my smell is at around 80% much of the time. Food has never tasted so good!
I can't explain why it's come back, except that I read about the possible benefits of zinc as a supplement and started taking one-a-day tablets a couple of months ago, more in hope than expectation. Coincidence? Maybe, but I'll carry on taking the zinc just in case!
I really had almost given up all hope of smelling/tasting anything ever again; this post is a message to all fellow anosmia sufferers - keep the faith.
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