Phantom smell: Hello all, My sense of smell... - Cure Parkinson's

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Phantom smell

Missy0202 profile image
20 Replies

Hello all,

My sense of smell is present, but for the last 6 weeks I have been smelling a foul scent that is not really there. It is almost like a pungent soap. Originally I thought it was coming from the clothes that were washed and may have had too much soap or something, but after this long it is most definitely not the case. I can smell it when I wake, wear a mask, when I am outside in the fresh air and even in the shower. Does anyone else suffer with this very weird thing? I know most people suffer with a loss of smell, but a phantom smell.... anyone??

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Missy0202
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20 Replies
Patrickk profile image
Patrickk

I had a virus about 10 years ago where I lost 15 pounds in 15 days (so it wasn't all in my mind), felt a sudden dropping sensation just as I would fall asleep (fell asleep only thanks to Ambien) and would get this sickly sweet stink smell every couple of minutes. Went to ER because I had just had a synoplasty -- assumed a post op infection. I still get the smell every rare once-in-a-while.

So my guess something minor wrong with your brain wiring -- but likely nothing physical actually wrong.

Missy0202 profile image
Missy0202 in reply toPatrickk

Thanks Patrick. I’m sorry you went through that horrible ordeal. Thanks for responding. I am hoping the big thiamine can tackle this one too!’

jujulini profile image
jujulini

Sometimes I can smell like something is baking like cake or cookies that no one else can smell and the oven isn’t even on. But it only lasts a few minutes. And at least it’s something pleasant to smell. Lol

Missy0202 profile image
Missy0202 in reply tojujulini

I might not complain so much if it smelled as good as they!! Thanks for your response. 😃

Normanjean profile image
Normanjean

I get very strong smells that last a day really strange

My wife said that before I took B1 she could smell a sweet odour which some other partners with PD have also noticed

My sweating has also reduced dramatically

Missy0202 profile image
Missy0202 in reply toNormanjean

Wow. Thank you! Do you still get strange smells while on the B1?

Normanjean profile image
Normanjean in reply toMissy0202

Not as often

jujulini profile image
jujulini in reply toNormanjean

Come to think of it, I used to smell the baking smell more often before I started taking the B1. Interesting.....

Normanjean profile image
Normanjean in reply tojujulini

Yes I don’t get those distinctive smells as much since on B1

Missy0202 profile image
Missy0202 in reply tojujulini

Yes, very!!!

NRyan profile image
NRyan

I smell smoke every once in a while. No one else can smell it. No fires so far.

Missy0202 profile image
Missy0202 in reply toNRyan

Thanks for replying!

pdpatient profile image
pdpatient in reply toNRyan

My doctor calls your experience “hallucination”. LoL, as long as you don’t think that a lonely lady is singing a sad, wistful song somewhere around the home.

RKM

maugonnet4213 profile image
maugonnet4213

I have had various phantom smells for a few years. Some are pleasant and some are unusual. So far, none have been hard to tolerate. I don't know if they're connected to my Parkinson's. I'd love to find out, though. I've just gotten used to this phenomenon since it's neither painful nor limiting.

Missy0202 profile image
Missy0202 in reply tomaugonnet4213

Well I am glad yours are not bothersome. I can't say the same for mine. I hope if they continue they become less significant. Thanks for replying

slilli profile image
slilli

Yes I often smell burning plastic, nobody else smells it and nothing is actually burning.

Missy0202 profile image
Missy0202 in reply toslilli

It's really such a strange phenomenon. It sounds like I will just have to get used to it :(

kaypeeoh profile image
kaypeeoh

As a kid I smelled things that weren't real. I'd walk into a room and smell fresh paint but no painting had been done for years. Someone called it olfactory hallucinations. During stressful periods, such as final exams, the smells were much worse. They generally weren't objectionable. Rarely I'd smell cigarette smoke. I've never smoked anything EVER. I had developed vertigo and had an MRI that said I had M.S. I took Tysabri infusions once weekly for more than two years. The vertigo went away with one steroid treatment. The smells would stop after the infusions and recur a day or two before the next treatment day. Eventually the smells stopped recurring. Then I was diagnosed with Parkinson's.

Missy0202 profile image
Missy0202 in reply tokaypeeoh

I am so sorry you had that terrible journey. Were you misdiagnosed as having MS? It is interesting that your olfactory hallucinations stopped when you got diagnosed with PD, and mine just started.....

kaypeeoh profile image
kaypeeoh

The MRI showed white spots in the brain so the Dx was M.S. I stopped the M.S. treatment but it was another year or so before the PD diagnosis. Both diseases are brain-based.

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