Changes in sense of smell

[zorro1]

Hello all. Just wanted to see whether other people with lung conditions have experienced changes in their sense of smell as their lung issues developed. I have alpha 1 antitrypsin deficiency (zz) and shortly before I learned of this I noticed my sense of smell changing. This seems to have come on quite suddenly in the past few months. I used to love the smell of cut grass but half way through this summer I realised it had started smelling very unpleasant - sort of acidic - to the point where I now wear a mask to mow the lawn! On the other hand i could barely smell the fragrance from the roses in my garden this year. Around the same time as the grass problem my cats' food (all wet varieties) started smelling really strong and odd - in an acidy sort of way. I also noticed some perfumes and deodorants smelled unpleasant. At first I thought it could be because of a cold I had a while back but that's long gone and the smell issue has persisted. I have normal spirometry results for my age though I've recently been experiencing breathlessness on exertion. I'm not on any medication. After asking about this on the Alpha 1 website several people mentioned they had experienced issues with their sense of smell, I wondered how widespread it might be amongst people who have COOPD unrelated to Alpha 1?

[Nottobad]

Hi I have lost my sense of smell and taste. I don't have Alpha 1. I have COPD and a small showing of bronchiectasis.

[zorro1 in reply to Nottobad]

Thanks Nottobad. Has anyone explained, or have you any idea of why that would happen. I'm keen to understand whats going on!

[dava in reply to Nottobad]

I'm with you there even hate it when my wife cooks and all them spray can smells

[sassy59]

Pete cannot smell much and sometimes thinks things taste odd. He has sarcoidosis and COPD. Xxxxx

[zorro1 in reply to sassy59]

Thanks Sassy59. I've found certain things taste odd too. I drank some ginger beer the other day and it tasted vile. I used to love ginger. Has anyone ever offered an explanation as to why these kinds of changes happen?

[sassy59 in reply to zorro1]

No, not that l know of zorro. Xxxx

[zorro1 in reply to sassy59]

Then I shall keep on investigating! xxx

[Nottobad]

Hi Zorro there could be many different things causing it. It could have nothing to do with lung problems. My mum also lost her sense of smell and taste or things tasted different. And she did not have lung problems. Xx

[jimmy1c]

Hi zorro1

I have COPD emphysema and I have noticed I can smell things very acutely, things I didn't notice much before the onset of my condition

Jimmy

[Ergendl in reply to jimmy1c]

Me too, especially things that set me off coughing.

[zorro1 in reply to Ergendl]

Hi Ergendl, I wonder if it's your body warning you to keep away from the problem substance.

[Ergendl in reply to zorro1]

I think so.

[jimmy1c]

Hi on reflection my sense of smell may also be good due to stopping smoking

Jimmy

[zorro1 in reply to jimmy1c]

Thanks Jimmi.

Well done on quitting - big achievement. My hubby quit 10 years ago and I saw how hard it was for him. xx

[zorro1]

Thanks Nottobad. I've read that taste and smell can decline/change with regular aging too. There were definitely some common threads amongst Alpha 1 patients though, especially when it came to perfumes/deodorant/cleaning products - mainly that they smelled so strong/unpleasant that people had to actively avoid them as they felt ill. So far I'm the only person having problems with cut grass! xxx

[annenic]

Hi I have Emphysema and the smell of my dogs food turns my stomach nowadays. Also I smell weird things in the air at home, all smoke related. Im constantly looking for things burning

[zorro1 in reply to annenic]

I get the smoke smell too, but only when I'm lying down in bed. Not sure if it's real or not. My other half doesn't smell anything. Must be very distracting is you have that all the time!

[annenic in reply to zorro1]

Its not all the time, it comes and goes, but hubby hates th phrase "can you smell.......... " lol lol its a funny old disease xx

[1Cazza]

My Mum has COPD, and hasn't been able to smell anything for years and years, she cannot remember being able to smell. I remember coming home as a child from school and our home was full of gas, because the pilot light on the cooker had gone out.

[zorro1 in reply to 1Cazza]

I bet that was scary! I think I'd rather have a dodgy sense of smell than none at all.

[vere]

I have Asthma and COPD and whereas I always had a very good sense of smell and taste, it seems to have got lost somewhere. I had a change in medication October 2015 and am wondering if this might have anything to do with it.

[zorro1 in reply to vere]

Hi Vere, I wouldn't be surprised if medication played a part for some people.

[vere in reply to zorro1]

Thanks Zorro1

[MoyB]

My first warning of an infection coming can be an unpleasant smell indoors that no one else seems aware of. It is the same smell every time and the air seems exceptionally dry, causing me to cough. I've tried to identify the smell - not dust, not mildew but something in between, even when there is no dust or mildew present. I have now found the smell goes with me into other peoples' homes too, so I guess it's part of me! It's a good warning sign that infection's on the way, but not very pleasant.

I am particularly sensitive to some perfumes and cosmetic smells these days. A friend wore some perfume the other week and I could not be near her as it caused me to cough. Also, I bought a different deodorant and had to get rid of it as the smell affected my chest. It was the usual make - just a different aroma.

It's good to hear I'm not alone with this. I have wondered if I'm going mad with the 'indoor smell' as I am definitely the only one aware of it and even opening windows wide doesn't make it go. Horrible!

[zorro1 in reply to MoyB]

Hi MoyB,

I feel the same way. It is reassuring to know that these odd symptoms and experiences are shared by others. I'd love to know what causes them. I walked into a swimming pool area the other day and felt as though I were inhaling toxic gas. Had to hold my breath and rush out. Haven't yet found any relevant research papers dealing with this. At least you know you're not going mad!

[Jancon]

My sense of smell has become so acute. My Husband has aftershave that nearly drives me mad. He has to be very careful. He loves Egg and Chips but if he gets the oil too hot it is awful and he keeps the windows open as well. I don't know what causes this but it is obviously related to our condition of COPT. Regards to all - Janc

[zorro1 in reply to Jancon]

Hi Jancon, Maybe it's time for hubby to forgo egg and chips at home and change his aftershave to something you can tolerate! I feel I've entered a strange new world recently where smells can jump out and assault you as you go about your business. Most of the perfumes I have now smell bad to me, though I do still like vanilla, which hasn't changed. I'd love to know what exactly is going on too. Apparently the lungs have a sense of smell and I'm guessing these issues are related to that.

[Petto]

In 2000 I had my right lung removed For about 4 days after, my sense of smell was so acute!!!! I think I had the sense of smell of a dog It went after a few days though

Petto

[zorro1 in reply to Petto]

That is so bizarre Petto. Did you mention it to your doctors? I'd love to know what the medical profession has to say about these experiences.

[Petto]

Sorry zorro1, I didn't mention it to anyone At the time, I was putting all my strength getting over my op It was a very difficult time for me so my sense of smell, whilst odd, didn't take on much importance I'd be fascinated to know now though

[zorro1 in reply to Petto]

Of course, after an op like that you must have more important things on your mind. I do hope that you have recovered well from the trauma. I will be seeing a respiratory consultant for the first time next month so will ask him if he can explain our experiences with smell! x

[Petto]

If you get an answer, I'd love to know too Please can you keep me informed?

Thanks very much

Petto

[zorro1 in reply to Petto]

I will Petto. All the best.

[Hidden]

The hubby is Alpha one ZZ. Diagnosed ten yrs ago at 47. He had gotten a cold and sinus infection and lost his sense of smell since then. He’s now Fev1 25% and easily winded.

[HungryHufflepuff in reply to Hidden]

I got the flu quite badly last year and lost my sense of smell then. Sometimes I think I smell something sour/citrusy when there’s nothing around that would smell like that. Otherwise I just smell nothing, which is weird and not particularly pleasant and I keep hoping it will come back. Best wishes to you and your husband.

[zorro1 in reply to HungryHufflepuff]

I used to get a vinegary smell whenever I was recovering from a cold!

[HungryHufflepuff in reply to zorro1]

That's really weird! It would be great to understand what all these things mean.

Your original post was from two years ago. Do you still find things smell acidy, and has your sense of smell returned to normal at all?

[zorro1 in reply to HungryHufflepuff]

Not back to normal but I have noticed variation. For example sometimes perfumes/deodorant/grass smells are very strong, but then there are periods where they're not so bad. This variation doesn't appear to be related to whether I have a cold or not. I did experience a period of a few months from when I first wrote the post of my sense of taste going awry too. For quite a while the taste of ginger (which I love) tasted disgusting. Also a lot of foodstuffs tasted tainted or burnt. I suspect some other herb/condiment was involved but didn't track it down before my taste returned closer to normal!

[zorro1 in reply to Hidden]

Alpha 1 is such a strange condition. I count myself fortunate to be in decent health still. Many Alphas are struggling well before they hit 60. All the best to you and your hubby.

[christina1947]

Hi zorro 1. Traffic fumes smell so strong for me don’t make me cough but I have to cover my nose with a scarf just so strong especially motor bikes Take care xxxx

[zorro1 in reply to christina1947]

You too Christina. I do the scarf thing as well. And it's not just the horrible smell - I worry about the damage the fumes do.

[zorro1]

Ive heard packing in the smoking has that effect. Good on you for giving up.