Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Discussion in 'Neurological/Neuro-sensory' started by jackie, Dec 7, 2009.

  1. jackie

    jackie Senior Member

    Hi guys (this is actually my first thread-starter!)...I just HAVE to put this out there...and I certainly hope I'm not the only one that smells odors (specifically SMOKE!:eek:) that nobody else seems to notice!?:eek:

    This started for me during this past summer and comes and goes...but now it is happening more frequently and lasts longer. I smell smoke....sometimes similar to a "Forest Fire"...sometimes like a camp-fire...often as though something is being burned on a stove (and it even resembles cigarette smoke at times). Just yesterday I could have sworn that someone in the house was grilling Hamburgers! :rolleyes:

    It wouldn't be so terrible if it was a nice smoke smell...but it's quite obnoxious....a musky, burned odor - fills my nose, makes my eyes burn/sting and often congests my lungs (just like too much "real" smoke would do).

    One of the few common CFS symptons I have not experienced so far, is any chemical sensitivity. I'm very lucky in that. I can still enjoy fragrances, for example.

    And no one in the household smokes and neither do my neighbors (whose houses aren't situated that close to my property anyway)...and we are Vegetarians, as are the neighbors closest to us. So no charred cooking smells from them.

    The odor can be noticable from any room in the house (but ONLY to me!)...and as a matter of fact...the very first time I noticed it I was standing outside one night, on my second story deck (it was mid-summer and I thought it was curious that someone was using their fireplace in all the heat!)

    We live 2 blocks from the Pacific Ocean - on a steep hill so we are unobstructed from the fresh Ocean air.

    The only "new" problems for me is a recent dx of Hypothyroidism/multiple Thyroid lesions (less than1cm - so no biopsy...just tracking them)...and I haven't even started Thyroid meds yet.

    Oh, and I have increased headaches (like a horse kicked in the back of my head - behind my ear)...but I've always had a real problem with headaches (from Cluster & Migraine to Optic Migraines) from time to time.

    I was wondering about sinuses...but I don't have sinus pain/congestion (I do sometimes have pain inside my nostrils - weird!?...put it doesn't seem to correlate with these "smoke smelling" episodes). I do have a history of Parasthesia (due to Neuropathy).

    Does this ring a bell to anyone here? I looked as best I could online, but didn't find too much info. I see a neurologist every 3 months and I will dump this in his lap in January!

    Thanks in advance for any ideas/suggestions!

  2. Mithriel

    Mithriel Senior Member


    I can taste butter in my mouth.

    Like your smell it is not pleasant and I can no longer stand to eat real butter.

    I get random twitches and movements and I think it must be the nerve to my taste buds firing.

  3. gracenote

    gracenote All shall be well . . .

    Santa Rosa, CA
    smelling smells that aren't there

    I just did a quick google search of "smelling smells that aren't there." There were 13,300,000 results.

    I didn't find A site that explained it well, but it is obviously not uncommon. Also, "tasting tastes that aren't there" was mentioned as well. There are a lot of people describing experiences you might want to look at. Wish I had one good site, but don't have the energy to research it right now.
  4. Mithriel

    Mithriel Senior Member

    Thanks for that Gracenote. I will have a look later.

  5. jackie

    jackie Senior Member

    Thanks for the replies Mithriel and Gracenote! :)

    I "googled" as suggested and one of the first places talked about this happening with Migraines (also happens frequently as a warning of an impending seizure with Epilepsy...I don't have this - although my dad was an Epileptic).

    In fact, the four stages of a migraine were expertly explained. The olfactory hallucinations can sometimes happen INSTEAD of the actual headache part! I did not know this!

    Then I googled "olfactory hallucinations" and found lots of info there. Don't know if this will turn out to be my problem..but it gives me something to look into.

    As I said, I do have a history of both cluster and Migraines (AND optic ones too...where you temporarily lose color vision)...just haven't had one for a while.

    I read that you will not smell an odor that you haven't smelled in the past. Interesting. Today the "smokey" smell began to resemble the quite repulsive odor of a moth coming in contact with a burning light bulb!?:eek: YUCK!:(

    This is getting OLD! I can add this quirk to the perpetual sound of running water that I "think" I hear in my left ear!?:confused:

    jackie:p (just being a mess!:eek:)

    (ps Mithriel...that's a darn shame about the REAL butter! ;))
  6. August59

    August59 Daughters High School Graduation

    Upstate SC, USA
    Yes, the good ole phantom odors. I have them pretty much all the time, but they vary from say a musky smell of a old closed up house to as you say smoke. There are some that I used to smell all the time and not bother me, for instance if I cook a roast in the oven thats marinaded in Worchestershire sauce and I happen to cook it a little too long. The results being a strong Worchestershire sauce odor in the house, I'll get terribly dizzy and nauseated and have to air the house out quick. It used to not bother me a bit.
    The other thing that I have become very sensitive to is pots, pans and dishes banging together. Almost like they are amplified.
    I can almost gauge what kind of day I'm going to have just by how I smell and hear in the morning. I can be having a good day and get stressed about something and here it comes. It is a weird thing, but that leads me to believe that there isn't any doubt that this disease attacks the ANS because that is what controls these senses.
  7. glenp

    glenp "and this too shall pass"

    Vancouver Canada suburbs

    For a number of years i have had sessions of smells that are not there. Sometimes I feel like the smells are so bad they make me nauseaus. My doctor told me this is part of the aura of migraines
  8. jackie

    jackie Senior Member

    August59....Like you, I guess I must have been experiencing these "phantoms" pretty much all of the time...I just took them for granted.

    As far as sounds go (I haven't admitted this before) I do hear things that sound SO REAL...but most likely are not even happening!?:eek: (footsteps walking towards me, the sound of my name, snippets of conversation or a few words spoken, a door being closed - stuff like that.) And the sounds seem to be quite close by (even right next to me) - so I know they're not real.

    These sounds are very different from the Tinnitus (the sound of water running) I have. I can't tell you how many times I've walked out to the garden, thinking I've left water running in a hose! I KNOW that isn't the cause - yet it sounds so REAL I continue to check!? Silly....:rolleyes:

    Actually, one of my nieces also has ME/CFS and has told me that during a bad crash her hearing becomes so painfully acute that she can hear a cap being removed from a bottle or someone taking a potato chip out of a bag 2 or 3 rooms away from her! That's pretty bad!

    I don't have a problem with acute hearing - just an increased sensitivity to ALL noises - especially to all loud, repetitive or jarring ones.

    I think your theory regarding ANS is right. Many years ago (when I was in the process of being tested) I had extensive Neurological and Pulmonary workups and was told I had ANS abnormalities. That's when I was also dx'd with Trigeminal Neuralgia.

    Glenp...good to know that your "smells" come and go! Do you have Migraines as well? If so, do you find that your episodes line up with the headaches or do they sometimes take the place of a full blown attack?

    Today, I've only noticed the burning smell once!...but then I'm having a reasonably "good" day without any headaches or nausea.

    Folks...we may have sorted out my problem! Thanks:)

  9. Alesh

    Alesh Senior Member

    Czech Republic, EU
    Olfactory hallucinations are quite common in another brain disease, i.e., schizopherenia. I always wondered why psychoses are to be excluded if the diagnosis of CFS should be made. After all CFS is a neurological disease according to WHO. If CFS is indeed a neurological disease and especially a chronic viral encephalopathy the occurrence of psychotic symptoms like olfactory hallucinations should be quite high. Even if I've never had any kind of hallucinations I had something similar to a delusion about nine years ago. But it didn't match any delusion known in psychiatry, at least I could not find anything what would be similar to it in any descriptive psychiatry literature at that time.
    wastwater likes this.
  10. Mogwai


    Auckland, NZ
    For the last few days I've been experiencing this on and off...

    I'm going to make sure there is nobody next door puffing away, before I add this to my wonderful array of bizarre symptoms.
  11. alex3619

    alex3619 Senior Member

    Logan, Queensland, Australia
    A thread like this pops up from time to time. Many of us smell smells that others can't. In my case anything sitting next to dried (oil based) paint has the smell of paint. Since most places moved to water based paint I no longer have this issue.
    NK17 and Mogwai like this.
  12. NK17

    NK17 Senior Member

    I'm extremely smell sensitive and have had episodes of fantom odors.
    I think they can be one of the manifestations of acephalgic migraines.
    The fantom smoke smell is a classic that I've experienced in the past.
  13. ukxmrv

    ukxmrv Senior Member

    I get this burning smell as well. Only at nights /evenings oddly. Seems to come and go. Been decades of it now.
  14. IreneF

    IreneF Senior Member

    San Francisco
    I have periods of smelling a bad, car-exhaust odor. No one else can detect it. I smell it for a couple of weeks and then it goes away. I feel better knowing that other people experience these things.
  15. Silence


    Northern CA
    I get phantom smells occasionally and also get migraines/ auras/ snowy vision. I also smell smoke sometimes. I think it could be related to migraines. ....oh and I used to hear phantom noises, as if someone was calling my name.......eerie.
  16. Little Bluestem

    Little Bluestem All Good Things Must Come to an End

    @jackie , @Mogwai , @ukxmrv , @Silence , do you have smoke alarms with working batteries? If you should experience a real fire, you might not realize it.
  17. justy

    justy Donate Advocate Demonstrate

    I sometimes can smell toast cooking - usually only at night. De Meirleir did think I may be having seizures during the day (many tiny ones with slight absence plus myoclonic type jerks) due to bacteria causing brain inflammation. I also have a history of migraine as a child/teenager and a few years ago had a lot of zigzag auras with no headache.

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