weird smell: Hi everyone. I know that we're... - Cure Parkinson's

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weird smell

jeeves19 profile image
23 Replies

Hi everyone. I know that we're not meant to be able to smell anything but recently I've been smelling something in my own head (or nasal passages)! It's not a pleasant smell, rather musky and i wish I knew what it was. It's not the first time I've smelt this during my life. I'd say it hung around about 10 years ago and then went away but it seems to have re-appeared. Anybody had similar? When one write 'PD and smell' into Google, there were many articles about a Scottish lady who could smell her husband when he got PD. Irritatingly, the journalists focused on how this ability might be able to provide a way of diagnosing the disease, but it struck me that nobody was asking the central question : where does this smell come from and what can it tell us about the cause - if any - of the disease? I did find one line that suggested scientists had determined that it came from the skin. I'm probably mixing two issues together here as my smell is definitely coming from inside my head somewhere, not my skin, but the idea of smelling of something is intriguing. One of our members has suggested to me that PWP may have ammonia toxicity and I must say that what I can smell doesn't seem too far removed from an ammonia/bleach thing.

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23 Replies
Farooqji profile image
Farooqji

I have the same issue but when when I ask someone else to check out the smell of my skin , I get the feedback that it's normal

Not in my head or on my skin. Occasionally I experience a strong acidic odor that takes my breath away. It lasts for a couple minutes then goes away.

dentonpark profile image
dentonpark

From time to time I get an ammonia smell. 60,m,diagnosed 2015,no meds, exercise 4 to 5 times a week 80%.

Enidah profile image
Enidah

I smell things a lot that aren't there. One is musty and sometimes it will be a flower that has a strong scent that I was around in the past. I think of them as sense memories. Not unpleasant.

jeeves19 profile image
jeeves19

Yes I get the same feedback. Maybe that’s a good thing !

Ewcia profile image
Ewcia

I Have the same issues for the last couple years. Diagnosed last year. Not on medications.

stolimon profile image
stolimon

sinemet has a taste that lasts

SilentEchoes profile image
SilentEchoes

It may be related to other forms of hallucination.

lempa_nik profile image
lempa_nik

I don't notice any odd self odor. But my wife, who has a most acute sense of smell--she's what is called a "supersmeller"--will sometimes sniff my head and call me "potato head" because I smell like a potato. (Not very flattering that!) Since I am bald, she is, no doubt, picking up the scent of my scalp. (I don't use any shampoo, soap, or other chemicals on my head.) Well, I think potatoes have a kind of musty smell--not at all like ammonia.

jeeves19 profile image
jeeves19

Hmmmm.......I can’t help wondering what the cause of these smells are and why medicine doesn’t seem to pursue this more vigorously?

Hikoi profile image
Hikoi

Phantosmia

mayoclinic.org/diseases-con...

Pelley profile image
Pelley

Our brains are wonderful muscles even with the slight software glitch we all have. I am certain my brain can reproduce smells and tastes to an almost believable extent. Driving down a country road in the spring and smelling fresh wet soil after a rain........ A steak sizzling on the grill........ My wiring has re-routed to almost make them real. Phantosmia is real! Embrace it and use it.

WE must be careful as well. I was cleaning a steam shower room I built in my house when my throat began swelling and eyes burning from the strong bleach solution I had mixed. It prompted yet another "and don't even think about cleaning the eaves" talk (lecture) from my wife!

in reply to Pelley

I recently thought someone had replaced my bleach with water, then realised I just couldn’t smell it😂

BUZZ1397 profile image
BUZZ1397

After Senator John Glenn retired astronaut took o ride in one of the Americas space shuttles it took them three weeks to get the old man smell out of the carpet perhaps you should check your under arms from the hair there take a good scrubby shower

😅

jeeves19 profile image
jeeves19

If only I had underarm hair Buzz! Good call though! Funny😊

dboobar profile image
dboobar

a form of hallucination; not all hallucinations are visual; I get them frequently. I lost my smell about 5 years ago but get these same nasty smells daily/weekly. The amount of medication and your stage of PD will effect these non-movement symptoms; you will get many other cognitive, psychotic symptoms as your PD advances and your medication (especially Ldopa). I know this because I experience this part of PD currently (over 13 years of true diagnosis). The doctors won't talk about this much if any; they really don't understand it and therefore will not address it. The symptoms are not only from the medication as doctors will suggest, but it comes directly from the disease itself.

jeeves19 profile image
jeeves19

Yet again I hear more frustration with the neurologists. I sometimes wonder what their role is. Don't know if I'm being overly harsh on them but most of my PD colleagues seem dissatisfied with the level of care they receive and especially a lack of compassion to some degree. Mine laughed at the idea I mooted at the my most recent appointment that exercise could help parkinsons.

Farooqji profile image
Farooqji in reply to jeeves19

I hate most of the neurologists due to their attitude and lust for money. I repeatedly have mentioned that they don't know about the root cause of the disease and the complications involved. They only know the names of the drugs approved by FDA and try different combinations of these medicines on patients. I am not mentioning the name of a famous neurologist whom I emailed for some guidance. He gave me the reply in one sentence and asked me to buy his book from amazon and give it 5 star!

Farooqji profile image
Farooqji

May be the PD medications have some effect on the skin smell

Pelley profile image
Pelley in reply to Farooqji

Meds have direct result in urine color and smell (so I'm told). I can imagine the same could occur on the outside!

Michele11 profile image
Michele11

It is not your imagination. I had the same experience for several months although no one else could smell anything. I found this post on it. Reminds me of the dog that could tell who had PD.

parkinsonsnewstoday.com/201...

GinnyBerry profile image
GinnyBerry

I used to be a super smeller. Now I can’t smell anything — it’s actually nice, in some ways, because I can’t smell stinky breath, musty rooms, and other things that used to make me unhappy.

But I CAN smell this inside-my-nose smell. It is not pleasant. It does not smell like ammonia; I can’t describe it. It smells how my childhood bedroom would smell if I didn’t clean it enough. I really hope it’s a phantom smell ...and not me.

Jeansm profile image
Jeansm

One of my pre diagnosis symptoms was a smelling hallucination. I believe there is a sort of acrid smell like burning plastic but sweet and sickly. My neurologist said it was a little known symptom of PD. I have hardly noticed it since taking Sinemet. In general I still have my normal sense of smell.

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