Phantosmia: The Smell That Isn’t There—And What It Means for
People with Superficial Siderosis
Have you ever smelled something so strong—burning rubber, cigarette smoke, or even
something rotting—only to realise no one else around you can? If so, you might have
experienced phantosmia, also known as smell hallucinations.
For some, it's an occasional annoyance. But for others, especially those with superficial
siderosis (SS), it can be a recurring and unsettling symptom, leaving them questioning their
own senses.
The Connection Between Phantosmia and Superficial Siderosis:
Superficial siderosis is a rare neurological condition caused by chronic bleeding in the brain,
leading to toxic iron and ss deposits on the brain’s surface. These iron deposits can
interfere with cranial nerves and sensory processing, causing symptoms like phantom smells,
hearing loss, and balance issues.
Why Do Some People with SS Experience Phantom Smells?
Olfactory System Damage – If the iron deposits affect the olfactory bulb or tract (which processes smells), it can cause distorted perceptions, including phantom smells.

Cranial Nerve Dysfunction – SS often damages cranial nerve1 (olfactory nerve), responsible for detecting odors. When this nerve is affected, it can create false signals, making people believe they smell something that isn’t there.

Brainstem Involvement – Since the brainstem helps process sensory input, damage in this area can create sensory confusion, including random smells appearing out of nowhere.


Real Stories: Living with Phantosmia and Superficial Siderosis
Nothing explains this strange phenomenon better than the people living with it every day. Here’s what they have to say:

Seebach, Mindy. (April 1, 2025):

"I lost my sense of smell around 2013. At Christmas, I thought I had a cold because I couldn’t smell perfume or cologne. A few years later, I started smelling bleach randomly—but when I held the actual bottle to my nose, I smelled nothing. It’s like my brain tricks me."

McDermott Louise. (April 1, 2025):

"I often smell things that no one else can. I’ll ask, ‘Can you smell that?’ and they say no. It drives me crazy!"


Rene Moss (March 29, 2025):

"I call them phantom smells. One is absolutely horrible—like wet ashtrays. It’s so strong, and now I’m even starting to taste it."

Jo McCaughey (March 30, 2025):

"I'm always thinking there's something rotten around me, like someone left food out behind the couch, or spilt something in the kitchen without cleaning it up. Drives me nuts. My husband thinks I'm crazy, the thing is, I know him well enough to know it may have been a possibility. I've also found I can't handle perfumes, cleaning products, etc. They smell extremely strong. I haven't found a link to any medication that I'm aware of.”

Sarah Hancock. (April 1, 2025)

“within 4 months after my brainstem bleed I awoke thinking someone had just cooked bacon for breakfast. After checking the kitchen and realizing everyone at home was still asleep, I still smelled bacon. I smelled it for the next two weeks. Since then I have also smelled putrid grossness periodically, but gratefully I can typically hide smells by over riding them with essential oils like Frankincense Sacra”.

Mary Christine Smith (April 1 2025)

“For the last few years I’ve experienced heightened awareness of smells and during the last year have completely imaged them . Especially at night - lately it’s a very heavy fragrant smell like perfume. It does wake me up sometimes”

Wesley Junkeer (April 1 2025)

“that’s how I got diagnosed with SS! I started getting these smells of petrol/ perfume - got an MRI and that’s when they found SS. My history prior to that was that I had a spontaneous subdural hematoma, which we’ve now put down to the fact that I had a CSF leak (T1/T2) - since the SS diagnosis, I’ve had the tear on my dura surgically repaired and am on ferriprox. I still get the smells from time to time - they last a couple of days to a week. Not as intense though. The smells have also evolved to a smell of plants / cut flowers / wet soil. My neuro believes the smells are linked with frontal lobe seizures, but also not sure. I hate when they come. Weirdly they came today.”

How to Cope with Phantosmia:
If you’re experiencing phantom smells, here are a few things that might help:
Keep a Symptom Journal – Write down when phantosmia happens, what the smell is like, and how long it lasts. This can help doctors understand patterns and possible triggers.

Check for Environmental Factors – Sometimes, exposure to strong smells (like smoke or cleaning chemicals) can linger in the brain, creating false perceptions later.

See a Neurologist – If phantosmia is frequent, especially with other neurological symptoms, an MRI can check for conditions like superficial siderosis.
Try Sensory Distraction – Sniffing coffee beans, citrus, or peppermint can sometimes override phantom smells and reset your senses.

Look into Iron Chelation Therapy – In SS, iron buildup in the brain is the root problem. Treatments like deferiprone can help remove excess iron and potentially reduce symptoms.

Final Thoughts:
Phantosmia can be frustrating, isolating, and even disturbing, especially when no one else can validate what you are experiencing. But you’re not alone. For those with superficial siderosis, it’s a sign that the brain’s sensory pathways are being affected, and while there’s no instant cure, there are ways to manage and minimize the impact.

If you or someone you know struggles with phantom smells, consider reaching out to a neurologist or an SS support group like Superficial Siderosis:The Silent Bleed.

Understanding what’s happening in your brain is the first step to finding relief.
Have you experienced phantosmia? Let’s start a conversation—share your story with me below, it could well make it into the newsletter.

Debbie
admin@thesilentbleed.co.uk