Heightened sense of smell...worrying - Behçet's UK

Behçet's UK

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Heightened sense of smell...worrying

mark3D profile image
6 Replies

Hi All

Not been active recently but I have been plodding along trying different things with my consultant.

Over the past few months my sense of smell has gone from normal to superhero/bloodhound its crazy, i can smell someone smoking from 2 doors down. 

MY consultant has referred me for nuero testing as this could be a sign of brain damage

does anyone have the same or similar experience? 

I am very worried 

Mouth/throat ulcers  still there, skin awful during flares, so tired and also feeling really FOGGY headed almost like I'm drunk but with out the alcohol 

just not sure what is going on

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mark3D profile image
mark3D
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6 Replies
andreafm profile image
andreafm

Hi Mark

I have had episodes of hightened sense of smell and smelling things that aren't there.

I can't say what causes mine but i have had it for years on and off. 

I was also misdiagnosed with Chronic Fatigue Syndrome and was told many years ago that it was connected to that.

Obviously not a good answer as i haven't got CFS but it does show another similarity.

I hope yours isn't anything serious and would be interested to know what your Doctors come up with 😊

nurse_ratchet profile image
nurse_ratchet

Hi there,

Never thought it could be part of BD, but I have always had a hound's nose. Pretty sure I have had BD since childhood, but only in 2000 did it become unmanageable. After 2 mos treatment of steroids, I was good until 2012. 

I know if someone is smoking in their car, 3 cars ahead of mine , windows rolled up-can smell it:/ etc

My Dad used to call me the smoke police! I seem to smell things that other people can't.....weird😕

I too am, dog tired all the time, sore everywhere(legs mostly) and forgetful/foggy brain.

Please do let us know what the MD says about this....you've peaked my curiosity!

Gen😉

Michja profile image
Michja in reply tonurse_ratchet

My daughter and I both have the same sensation with having a strong sense of smell. At times it can bring on a migraine and make both of us vomit, eg perfume or food.

I hadn't put it down to BD.

MrsR_75 profile image
MrsR_75

I have frequent periods where my sense of smell is heightened My husband says I have a nose like a dog, as I can detect smells from far away! I have been like this all my life.

Like Michja I too can literally be made ill by a smell- migraine or nausea. Coffee and perfume are major triggers for me. It's random when the smells are heightened. I can't follow a pattern

I thought it was just me/one of those things. Clearly another BD bizarre symptom.

Like yourself I am familiar with the foggy/drunk feeling. Feels like wading through mud when trying to walk or to find the right word.

Most of my symptoms are "neuro". I take Azathioprine and have just had the TPMT test to see if I can go up to the full dose for my weight, as I feel the efficacy has reduced lately.

I wish you well for your tests.

Jaxxi profile image
Jaxxi

I too get a heightened sense of smell, especially if I am flaring. Migraine is very common in people with Behçet's and I had connected it with that. Like the others, certain smells can trigger nausea and headaches. Synthetic scents are the worst: car air fresheners - urgggh.

Kiwichris profile image
Kiwichris

Yes pretty heightened sense of sell but also seem to have very sensitive eyes to light and ears to noise.... Can't stand anyone whistling, pots banging together and even the noise of a spoon scraping food out of a bowl drives me nuts.... ! Anyone else find that too???

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