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Does anyone have Phantosmia along with migraines?

I've had migraines for 15 years or so and about a year ago I started smelling cigarette smoke when there was none, which also is my main migraine trigger, that, artificial sweetener, and perfumes. Oddly (and thankfully) enough the "fake" cigarette smoke smell does not cause a migraine.

I went to my neurologist and had tests done to find out I have abnormal activity on the left temporal lobe of my brain and causes "silent" seizures. It is affecting my memory and quality of life. He prescribed Oxcarbazepine which worked for the first year and now I am smelling it again so we upped the dosage and it's not working this time. Just curious if anyone else has experienced this??? Thanks!

  1. Yes, I experience phantom scents sometimes before a migraine as an aura symptom. Often the olfactory hallucination is the same as a trigger scent even though it is not present. Othertimes, I get unidentifiable phantom scents that I catagorize generically as "chemical" "animal" and "dirty"

    I also experience phantosmia during the migraine.

    During both aura and migraine I am hypersensitive to scent and it can be a challenge to know if a smell is "real" or not. I have frustrated myself sniffing about my home trying to find the source of a scent that is absent.

    I'm sensitive to scent all the time also being able to register faint smells and track down the source when others seem "nose blind".


    The phantom smells for me are not triggers, but they are a sign of a migraine to come (or again occur during the pain phase).

    This is the first I have heard of silent seizures, but it is understandable. I wish you the best in finding an effective medication/dosage.

    1. Yes. I smell burning coffee during the prodrome. Not during actual HA.

      1. Hi b2fcf8,

        YES! I experience phantom odors (they aren't really there) called olfactory hallucinations. Cigarette smoke is the most common one for me, but it doesn't happen with each migraine attack. Here is additional information that may help; https://migraine.com/video/secret-smell/ and https://migraine.com/living-migraine/social-media-used-to-study-symptoms/.

        Wishing you a low pain day,
        Nancy

        1. Thanks for your question b2fcf8. I also get olfactory hallucinations from time to time although they don't trigger migraine for me. I smell that cigarette odor too. It is really an odd side effect. I'm sorry that's a trigger for you.

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