Wednesday, February 23, 2005

Parosmia and Phantosmia: "Phantosmia involves olfactory hallucinations -- that is, there is no odorant present, but the affected person reports smelling something, usually something unpleasant."



The strangest phenomenon. I've been experiencing it fairly often lately. I'm sitting here at work, and there's a vague smell in my nose like I've been smelling chlorine, like at the pool. The other night it was foods, and the night before that, it was an oily smell, like that VO5 hair treatment in a tube. I wish I could explain it, but it seems I'm going to have to do more research. The only problem with that is once you start reading those sorts of things, it would be easy to be convinced you have all those ailments.

126 comments:

  1. I wish you the best of luck with this! I have been trying to figure out what has been causing me to smell smoke for almost 2 years now. My olfactory hallucinations mainly consist of a smoke smell which many times actually gags me. There was a week where I actually smelled starbucks... but that didn't last.

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    1. I read that people take Neuronton for this, but I stopped taking it. It seems like it may be growing less. I noticed these smells around Christmas. I had a steroid epidural in Oct. and one in Nov. and had been on Neuronton. It was getting very bad and now since I stopped the medication it seems to be getting better.

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    2. I am a 45 year old ex smoker. I quit two years ago, but now I get unpleasant smells that stick with me for days and it drives me nuts. The first time it happened was when I was visiting an old bedridden man. The smell of old urine and dankness in his house stuck with me for two days. And it comes back with a vengeance every so often and doesn't leave. I shower constantly and change my clothes. I also sometimes smell other things like feces or Old Spice. They are very unpleasant smells and it drive me crazy. My wife thinks I'm nuts. I've tried everything and my wife thinks it's all in my brain.

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    3. I am a 45 year old ex smoker. I quit two years ago, but now I get unpleasant smells that stick with me for days and it drives me nuts. The first time it happened was when I was visiting an old bedridden man. The smell of old urine and dankness in his house stuck with me for two days. And it comes back with a vengeance every so often and doesn't leave. I shower constantly and change my clothes. I also sometimes smell other things like feces or Old Spice. They are very unpleasant smells and it drive me crazy. My wife thinks I'm nuts. I've tried everything and my wife thinks it's all in my brain.

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  2. It's good to know there's someone else out there like this! Well, not good of course... Thanks for sharing that with me!

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  3. I have frantically searching the internet for information about this: for several weeks I am experiencing a faint, but clear odor of smoke. No one in my home smokes---it's making me crazy and of course, then I'm imagining the wires in our house are smoldering. But I detect it at work as well. Now I know this condition really does exist.

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  4. been experiancing this for years,mine usually flowers perfume and smell of marijane

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  5. I cannot believe this happens to others. I thought I was going crazy or that there was a ghost in my house torturing me. I smell cigarette smoke daily and my eyes start to tear and I start coughing. No one in my house smokes so this was really bothering me. I'm glad I found this website.

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  6. I'm so pleased to have found that there are others out there suffering the same as myself. I am going for an MRI scan next week ( which I'm sure I only managed to get because I work within the NHS in the UK).. I'm sure my consultant just thinks I'm making it up! I smell the same smell, can be for a few mins or a all day.. it can be days or weeks in between, but lately it has been every day! I describe it as a sort of industrial smell, almost like coal, or old fashioned coke, but wudnt say it was smoke as such.One thing for sure is its driving me nuts! I'm constantly searching the net for more information, but most of it does tend to be in America, I'm sure there must be more people in the UK.

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  7. I am very happy to find you. I've searched the web about this and not found much! I did find one site which said phantom smell can result from a brain tumor and help should be sought right away. I have told my Doctors here (ent) and they look at me like I am crazy. I even had sinus surgery this past year hoping it would relieve the problem. Now again this week the same smell has returned. I've had it for about 4 years. Smells like a room deodorizer or incense. Guess it could be a worse smell, but nice to know I am not alone!

    Delphia

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    1. I began having a car exhaust smell at work, (I am an RN in a health care facility) then at noc when I went to bed. I started to have some loose bm's and nausea. the car exhaust smell is so strong I can even feel it burn up inside my nasal cavity. In researching it, the term is "phantosmia". that is where you are smelling the odor but yet there is none around to trigger it. It originates in the "ole factory region" which is in the temporal lobe. The medical article I was referring to stated that a person experiencing this should see a ENT doctor to rule out a tumor or other abnormality. The odor is also referred to as an aura that can precede a seizure. I had the MRI to rule out any tumors etc and it was all negative. Based on my continued symptoms and nausea and increased abdominal activity, my Dr stated that he felt I had abdominal epilepsy in which I will see a neurologist to have some testing done there. All the research I have been doing stated that this has pretty much been seen in children;however they are finding more adults having it and feel it is now underdiagnosed in adults. Also, this is not the type of seizure where you go into involuntary movements and loose consciousness. It can be the phantosmia, then nausea, abd pain and loose stool. I am researching yet to see if this progresses into a more severe seizure. And yes the treatment is an anticonvulsant such as Tegretol. You might want to show this to your Doctors because it is real and puzzling maryjo_bass@yahoo.com Keep me posted on how your are doing

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    2. my son just had sinus surgery in Feb due to having a certain smell come out of know where but does seem to be there alot when he sneezes or blows nose, but it came back a few days after surgery, our next step hopefully is they will order an MRi of the brain so we can rule that out. after that not sure where else to turn.

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  8. I have just started to smell smoke--at home, in my car, in restaurants--where there is no one smoking.

    I also just started to use AMBIEN. I stopped the drug and hope the symptoms will subside.

    Do any of you use a sleeping aid like Ambien?

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  9. I was really happy to find this too! I smell smoke and it also causes my eyes and throat to itch and burn. Sometimes it's so strong it makes me sick to my stomach and gives me headaches. Has anyone found out anything since the last comment in Feb.? I have been to my GP and she sent me to a neurologist that sent me for an EEG and an MRI. I get the results back this Wednesday. Really hoping he can do something, it's driving me nuts! Will post back with results, hang in there!

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    1. My son had the mri in feb and it came back normal, no tumors, sent him for an EEG, one short one, nothing showed, one longer stay one, had an episode of smell thing for 40 minutes, they said no seizures, so they sent him home said it most likely is silent migrain, been on meds for over two months, still happening daily, has not changed. not sure where to go from here i feel so bad. i wonder if its intestinal, but going back to neurologist in Nov. feel so helpless on this for him.

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  10. Since 8/14/06 I started to smell smoke everywhere I go. The ENT scheduled a CT scan and all was negative. I'm looking for ways as to how to deal with this.

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  11. I have been taking ambien for several years(doctor approved for my situation) But this past year the phantosmia started. I have 3 main scents that occur - one rather pleasant when it is light, hard to compare to anything real. Sort of like pheromones , sweet caramel or incense. The others are more like the real things - Smoke, as in paper burning and exhaust like fumes from a motor or gas heater. It started weak and easy to cope with but has increased since my liver transplant. I like askiris would like to know if anyone else had a onset with using it - and if they stopped, did the
    condition go away?

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  12. Iam 48 years old and have kidney disease and high blookd pressure. But to looked at me you would never guess it. I am very active and very rerely did I complain.I smoked many years ago, In the last few months all I do is smell cirgarette smoke. I take alot of blood pressure medicines and in the last 6 months have been put on lunesta for sleep. This is driving me crazy. Can someone please help me understand. When this is mention the doctors they look a me like Iam crazy....

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  13. What to do about this? I have the stale cigarette smell; a couple of weeks ago it was a putrid paint smell. I can't escape it . . . it's very nauseating. I've been to a sleep lab recently for a study of my poor nighttime sleep and excessive daytime sleepiness. The smell began shortly after I stopped using Clonazepam as a sleep aid. The sleep tech was very insensitive in that he laughed at me when I mentioned the bad paint smell. I've taken Clonazepam before bed on a few occasions since the lab tests and don't notice any change in the constant nauseating smell (except that it changed from paint to cigarette smoke). Do any of you have any clues? thanks!

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  14. I have just discovered that I have phantosmia (and probably the other one as well)Just like all of you, my doctor has not been helpful at all and just looked in my ears and said I was fine!

    I've had the smells for about 6 months now and they are not really foul smelling - sometimes very metallic, other times very organic, like food. Often I'll just smell something I actually did smell , like a strong scent, but I'll smell it for a week! I thought initially that there was something wrong in my house - wires loose or something - then I realised that I smelled the smells at work too!
    Like someone else, I immediately thought 'BRAIN TUMOUR' but my GP certainly didn't seem woriied at all. I wonder if she even knows about this condition. I'm relieved to have discovered the name of the disorder but has anyone found a cure?
    I don't take any sleeping meds but I have been on a mild antidepressant (Citalopram) for about 3 years. Does anyone know if those kind of meds can cause our symptoms?

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  15. Wow, just like all of y'all, I thought I was crazy! My parosmia started when I was pregnant in 98. My smell is very metallic also, but sometimes also feels like a "taste"? On some occassions, great smelling things like bread baking almost makes me ill! Does anyone else talk weird while having an "attack"? I guess it's to keep air out of my nose! I am not on any sleep meds of any kind. This has been going on for 9 years now! Good to put a name to it!

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  16. I am so glad to read your postings. I have had this smelling problem on and off since spring and it is getting much worse. I smell this metallic odor almost always now. It goes away when I sleep thank god but is present and sometimes really overwhelming. I am truly getting depressed about this. It's such a distraction.

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  17. I am a 72 year old female in good health and do not take ANY meds but inderal for a fast heartbeat that I have had since 11 years old..I have had this smoke smell for awhile now..It started 3 years ago and lasted for about 2 months..This time it has been going on for about a month..I have not seen a Dr. but if it does not go away soon, I will, even though I doubt he will find anything...

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  18. Hi. For me, the phantosmia began when I started taking Effexor (venlafaxine) and Ambien soon thereafter when the Effexor kept me from sleeping.

    Has anyone found a way to make it go away, at least temporarily?

    I've learned that short sniffs will trigger it. Not that I want to do that, but it might help when describing it to a doctor.

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  19. Phantosmia started for me when I had a fairly serious head injury 8 years ago. As with most others in this situation I also suffer from parosmia in some smells and anosmia in some. For example, I can neither smell or taste garlic, I can detect onion but it smells strange but cirtus and chlorine are absolutely like they should be. The phantom smells I get are not unpleasant, despite what most of the postings on the web say. They pop up unexpectedly and some come back time after time. After 8 years some are almost like old friends!

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  20. I have this happen to me if I blow my nose too hard or too many times when I have a cold. The smell is nauseating, and makes it very difficult to eat. Fortunately, I'm aware of the cause, and avoid blowing too hard. I believe that I originally damaged my nose by using Afrin nasal spray, which is very effective but very powerful. I don't use it anymore, and haven't for 25 years, but the damage appears to be permanent.
    The only other smell related issue that I have is that I don't smell skunk anywhere near as strongly as everyone else around me - I know that it's there, but it isn't that strong or unpleasant for me. I don't know if this is related to the phantosmia or not.

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  21. I too have been smelling weird smells. My sensations are unpleasant, like a dirty cat box or spoling meat. Drives me nuts! I'm diabetic; take metformin; also have hypothyroidsim, hi BP, hi cholesterol and depression - so am on meds for all those. I've contacted my doc to see if the combination of meds is causing this. In with all of this - I can't smell or taste; seems my olfactory nerve was damaged about a year ago sith several bouts of sinusitis. So this is really weird; knowing that I've lost my sense of smell, but being plagued with s foul odor all the time.

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    1. My husband has many of the same conditions as you've mentioned. His phantom smells also started after starting Metformin meds in combination with meds for hypertension and anxiety. Would be great if you could update us and let us know (10 years later) if you managed to find a solid diagnosis for your symptoms.

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  22. hey i dont know what i have just would like for anyone who might know i have had some spells or something i fill weak and i feel distroted and i have a strange sense of smell like a rubbery smell its doent last long about 20 seconds or so but i get them all the time does anyone know anything let me know

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  23. I've was on ciprimil same as (Citalopram) for many years and have just recently switched to lovan, I've only now started smelling a chemical smell like nail polish remover.I've just realized that about a year ago I kept smelling my dog as he seemed to have perfume on, (LOL) now after reading this and my onset of the chemical smell I know whats going on. I must say I'm relieved that others have the same problem.

    I will go to the doctors as I'm concerned about a possible tumor.

    Pete

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  24. Finally, I know it's not just me! I experience the smokey smell...driving in the car, sitting in my office, working around the house. I'm not taking any meds,even quit advil in an effort to figure it out. I do take Flonase (a nasal spray for prevention of sinus/allerys). As of tomorrow, I'm stopping! Maybe that will help. The smell isn't awful, just disturbing. Plus making you think you are going crazy. Thanks to everyone for sharing, I knew my Doctor would NEVER believe me.

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  25. There is a group on Yahoo, the Parosmia/Phantosmia Support Group. You all may be able to find help there, it's a very caring group of people. Some people with Phantosmia can be easily helped with a few simple tricks we have learned. Try the Group.

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  26. I am so thrilled I found you. I thought that the smoke I almost constantly smell and actually feel in my throat was caused by a brain tumor. I have MS and a seizure disorder, and maybe for me this new condition is related to that. I made an appointment with my neurologist already. If he can't help me I will have to live with it. Knowing that others do helps alot.

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  27. And that's why I keep publishing these comments even though the post is 3 years old now... I'm hoping it's helping someone seek further the treatment that they need, and helping them feel like they're not alone. Continued best wishes to all of you!

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  28. Hello!! I will wake up in the middle of the night in a panic because my nose is burning from the smell of smoke. When it first started happening, I actually thought that the house was on fire because it smells like burnt wires. It has not happened since last year, untill last night, but as soon as I smelled it, I knew exactly what it was. It only lasts for just a few seconds and goes away. It has always been the smoke smell untill today...my house smelled like a baked potatoe..LOL How weird!! I take ambien occassionally, but I was not taking it when I first starting having the smells. I did however have a migraine last night...I plan on seeing my doctor next week!

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  29. I finally broke down and starting my Internet search - my "smell" issue has been going on for about ten years. I smell "tar" - sometimes on a continuous basis. No meds, fairly decent health. I've wondered if I'm mental because I don't know how to explain to a doctor. I've wondered if we can detect cancerous cells with our sense of smell - like some animals can do. So I'm asking - do any of you responding to these posts have cancer?

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    1. As I'm seeing the year this was posted you most likely have had an answer. I was doing a search for my son as he smells dirt periodically. When I came across your post I felt I needed to respond. When my late husband was alive he could tell if anyone was coming down with something as they had a metallic smell to them, even though no one else could smell it, and ultimately the person was soon ill, cold/flu etc. However, when he was diagnosed with Cancer, he could 'smell' 'it' coming from within him (I put the 'it' in quotes as it's too graphic to put what the 'it' is). No one else could smell it but he sure could. So your question hold a lot of truth to it. It definitely would be nice if someone would start a study on this.

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  30. I am now among those that smell this phantom smoke smell. I got me a bad case of "Smoker Nose" and I don't smoke nor do I frequent smokey places or hang with smokers.

    It started about three months ago and has progressively gotten more frequent. Now I smell it all day and all night. It smells like somebody set a cigarett in an ash tray right by me and the smoke is going up my nose. This is resulting in burning eyes and throat. It gets so bad that it triggers me to caugh. Even stranger is that I swear that I am even catching visual smoke in my peripheral vision. When I look over at it, it is not there. Can you say Phsyco?

    I have read that this may be cuased by ghosts (yeah right, Maybe it is George Burns haunting me while puffing away on his stoggie), chemicals, cleaning agents, allergies or a nasal fungas.

    I have also read that you can supress the smell in most cases by applying pressure with your finger on your lip just under your nose and this has provided me temporary relief as long as I push hard enough and have the patients to look like an idiot.

    I have heard that you can also get long term relief by using saline sinus wash products that you can buy over the counter. I just started mine last night.

    I have also heard of brain tumors being associated with this but I will not venture into that territory yet.

    I also wanted to make note that I have fully recovered from Thyroid cancer and subsequent removal of all of my Thyroid wihtin the last 6 years in case it is relevent to those seeking answers such as myself.

    I'll keep checking back for your comments and to see what else you fellow Smoker Noses are coming up with.

    Respectfully,

    Tom

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  31. I am now among those that smell this phantom smoke smell. I got me a bad case of "Smoker Nose" and I don't smoke nor do I frequent smokey places or hang with smokers.

    It started about three months ago and has progressively gotten more frequent. Now I smell it all day and all night. It smells like somebody set a cigarett in an ash tray right by me and the smoke is going up my nose. This is resulting in burning eyes and throat. It gets so bad that it triggers me to caugh. Even stranger is that I swear that I am even catching visual smoke in my peripheral vision. When I look over at it, it is not there. Can you say Phsyco?

    I have read that this may be cuased by ghosts (yeah right, Maybe it is George Burns haunting me while puffing away on his stoggie), chemicals, cleaning agents, allergies or a nasal fungas.

    I have also read that you can supress the smell in most cases by applying pressure with your finger on your lip just under your nose and this has provided me temporary relief as long as I push hard enough and have the patients to look like an idiot.

    I have heard that you can also get long term relief by using saline sinus wash products that you can buy over the counter. I just started mine last night.

    I have also heard of brain tumors being associated with this but I will not venture into that territory yet.

    I also wanted to make note that I have fully recovered from Thyroid cancer and subsequent removal of all of my Thyroid wihtin the last 6 years in case it is relevent to those seeking answers such as myself.

    I'll keep checking back for your comments and to see what else you fellow Smoker Noses are coming up with.

    Respectfully,

    Tom

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  32. Again, there are a number of things you can try to obtain relief, but you really should start with a neurologist and rule out a brain tumor or seisure disorder. Most likely this is nerve damage and the Parosmia/Phantosmia Group at Yahoo Groups may help you. Here is the link:
    http://health.groups.yahoo.com/group/Parosmia/

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  33. I had a seizure and took dilantin which eliminated the burning smoke smell BUT had to discontinue dilantin due to side effects. now the pantom smell is back full forceand KEPPRA seizure medication doesnt mask it like dilantin did. all tests negative re seizure i dont have brain tumor like ted kennedy

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  34. I have seen my neurologist and had an MRI of the brain. I saw an ENT and had a CAt scan of my sinuses. There is nothing to see. I look healthy, but smell smoke almost all day, every day. Maybe a couple of days a week I don't smell it. No doctor recommended any nasal spray. I have a seizure disorder and the neurologist said that I may be having seizures that cannot be felt physically by me...and he increased my tegretol. I also have MS and perhaps damage has been done to nerves in that section of my brain. Has anyone been told about seizures? I think this is something I will just have to learn to ignore. If my increase in meds makes this go away I will be shocked, but I am willing to try.

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  35. I'm new to the phantosmia scene. For only two weeks now I smell something metallic with yeast overtones. The sensation is bilateral, exists 80% of the time and varies in intensity. I was wondering how to break the news to my GP without the "white coat" gang coming for me. Thanks to all of you for your comments. Now I know how to proceed. I will post any and all info about my subsequent testing and treatment. Good luck to all of you.

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  36. Yes, me too: yeast, dirty mopwater, grilled cheese, burning metal or electrical wire, sweetish smelling (but chemical) odors, burning coffee... a few, familiar smells that seem now to go through a repeating cycle. This, accompanied by a burning sensation in the nostrils. Sometimes, I forget about it and actually notice the real scent of flowers or cut grass, and am blissed out. Anyone want to try to combine our ideas and find commonalities? I suspect soy, hormones (the symptoms began when I started menopause) and some kind of chemical sensitivity due to overexposure to commercial cleaning solutions (I spend lots of time in coffee shops, working on my laptop, and first noticed the symptoms there). If anyone has tried anything other than saline washes (temporary relief only), mentholatum (the same), essential oils (temporary), steam baths (temporary)... let me/us know, please. Also- any medical advances in this area at all? My doctor is clueless. By the way, I have NO history of trauma, mental instability, seizures, and my MRI and sinus scans were clear.

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    1. On another site a fellow said that he started doing oil pulling with coconut oil and his problem like this went away. I am going to try this .

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  37. I smell something so horrible it has no description. Been to Dartmouth Clinic in NH, AND to the Mayo Clinic in Scottsdale, AZ. Dartmouth thought it was neurological but I have clean MRI, Mayo said it was sensory. It's been 6 years of torture and nobody seems to have an answer. One thing I have discovered is that a draft will trigger it nearly 100% of the time. Laundry soap aisle at the store is murder. I smell bananas when I lay in bed at night. Flowers just sitting and watching TV. Then there is the STANDARD. It's horrible, makes my stomach turn and me nauseous. Such an unbearable condition and nobody can relate to it and seems nobody can pinpoint its source. To all of you out there suffering like me, I feel so for you and hope you find relief someday.

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  38. This group seems the most knowledgeable on the subject, and has helpful info, advice, and...when all else fails, empathy:

    Parosmia/Phantosmia, a site for people who have distortions of their smell.

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  39. I started smelling smoke constantly one week ago. Went to see the doctor and she told me she has never heard of this so there is nothing to worry about - strange kind of logic! She said I am overreacting... I wish I could put her in a room full of smokers for a week and see if she would also "overreact"!

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  40. I have recently begun to smell some form of smoky smell. It is only within the house but the smell is always with me. All our appliances have been checked out and found to be OK.
    Just a week ago I think I was too keen with the use of my nose trimmer from then on it all kicked off. I had previously gone 70 years without a trimmer, coincidence or what??

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  41. I started getting the cigarette smoke smell probably about 3 months ago. I had an upper respitory infection in March and couldn't smell for a while so I decided to try the saline sinus wash. Ican smell now but I get the smoke smell alot. I went to the ENT on 9/12 and as soon as I told her she knew right away what it was. I am going for a CT Scan of my sinuses. I do not know what will happen from there but she knew right away what I was talking about. The smell gets annoying because I don't smoke and no one in my house or office smoke. It often gives me migraines. I will let you know if I find anything out.

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  42. I have a phantom smell of ozone or burning electrical wires and it has moved into the back of my throat and mouth. When I breath in in through my nose it feels cold and the smell is so disgusting, I sometimes have to go to sleep so that I don't smell it anymore. I also put my palm in front of my nose and breathe in and the smell lessens or goes away but that isn't terribly practical unless I'm at home. I strated smelling it during a long stressful project in which I slept very little and when I did it was in a recliner. It has gotten worse through the year. It can make my eyes water. Sometimes I try to block it out by using Vicks Vapo Rub under my nostrils. This is annoying and pretty much sux. Has anyone else uncovered any remedies? Steam? It makes a flavor in my mouth like I am sucking on rubber bands, so I want to eat to replace the flavor, and I really don't need to be eating more! Thanks for listening!

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  43. I stopped smoking 8 months ago. I started smelling this horrible disinfectant smell & when I'd ask if anyone else smelled it, they'd all look at me like I was deranged. I went to a neurologist for the phantosmia and PTSD and he prescribed Trileptal & Topamax. The combination of the two have stopped the phantosmia completely. I don't think I have a brain tumor, but if the phantosmia comes back, I'm going to insist on an MRI. I hope this information is helpful.

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  44. I have been experiencing the stale smoke smell on and off for the last year or so. I'm guessing that it is related to one of the drugs I take. I am a 53 year old woman on hormone replacement, so I take prometrium every 3 months for 12 days. I just started it this morning, and now I suddenly have the smoke smell again, after not having it for months. I just looked back through a notebook I keep and found that the last time I had it was likely in April when I was taking this same hormone. I made a note about parosmia at the time. I also take a couple of other drugs and other hormone replacements - I have a few autoimmune disorders: graves disease, addison's disease, celiac disease, and osteoarthritis. I think I will start a little diary of what I take and when, and when I experience the smoke smell. If I figure anything out, I'll post it here! Good luck to everyone. This certainly is distracting and annoying! I feel for all of you!

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  45. I experience the same thing. It's an awful smell like gas/garbage/burnt meat - sometimes lasts all day, though sleeping always cures it. I found that this article, in reference to phantosmia, is exactly what happens to me. Onset via sneeze or sniffle. I am female, and this started around age 26 or so...been happening on and off for a couple years. When I plug my left nostril, the smell goes away, but I can't do that all the time! Good luck to everyone - I have an appt with a neurologist in a few months and will update if we ever figure it out. http://chemse.oxfordjournals.org/cgi/content/full/27/7/611

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    1. I've has similar "smells" since 2007, but on both sides. One side is a burnt smell and the other side is like yours (foul garbage, rotting, meat etc). Did you ever find answers or a long term solution?

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  46. It has been nineteen years now that I have been experiencing a strange taste and smell that usually lasts about 10 or 12 days. Years ago it smelled like burned muffins; now it smells more like a burned chemical. Along with this comes a dull headache and nausea, but I seem to also feel more hungry than usual. I had a CT scan in 1989, but that was clear, and also a sinus scan was clear. A burning match or strong odor of just about any type can trigger these episodes. This is making me more uncomfortable and angry the older I get. I am now almost 62. Good luck to everyone out there with the same symtoms. No doctors have helped; one said she thought it was a migraine episode. I now take Paxil (after years on Effexor), and I take Ambien to sleep. I also was once hooked on Afrin about 25 years ago, but don't use it anymore; maybe I damaged something in my sinuses. When I have a smell episode, I have the feeling that my sinuses are completely dry--almost a burning sensation.

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  47. I have had a lessened sense of smell for over six months (can't even smell my dogs--or their breath! Bonus), but in the past couple of months I have smelled burned carpet (2 weeks) and smoke smell (2 weeks so far). I have done some reading and have read all of the comments on the site and have one suggestion to make: ask your dr about your trigeminal nerve and how it could be involved. I had a brain tumor removed 2 years ago (a trigeminal schwannoma) and have come to believe that the issues left over with those nerves are causing the weird smells. Am wondering if anyone else has found such a link.

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  48. My phantosmia is due to a BRAIN TUMOR, specifically a Pituitary Prolactinoma. What shocks me is that no one has mentioned Dr. Douglas Hoffman or his advice on Phantom Smells. He says the most likely suspect is brain damage, such as is caused by a tumor, and that one's first step should be to SEE A NEUROLOGIST. Check his page at http://www.doctorhoffman.com/wwphant.htm and "Those Phantom Smells" 9/6/06 at his blog, 'Wax, Boogers and Phlegm' at http://boogerz.blogspot.com/

    Don't think that brain tumors are rare. According to the Pituitary Network Association http://www.pituitary.org/faq/, "Autopsy reports and radiologic and MRI evidence from around the globe indicate that one out of every five people worldwide has a pituitary tumor." And Pit Tumors account for about a tenth of all Brain Tumors!

    It took over 30 years for my benign (lemon-sized) tumor to be diagnosed. Maybe this info will lead you to discover if you DO or DO NOT have a brain tumor. I wish you well.

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    Replies
    1. I have a non-hormone producing pituitary adenoma also, about the size of a quarter, and have been experiencing phantosmia for about 1-2 years now...hopefully this will go away once my tumor is removed. PNA is awesome!

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  49. I get phantosmia very occasionaly and never thought anything of it. But today all I can smell is burnt coffee and I don't even drink coffee at home. I have bipolar disorder and have been on all sorts of meds. But I think it's more to do with when I am very tired and stressed. Will bring it up with the GP tomorrow but I doubt she'll have a clue what I'm on about........

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  50. I was glad to see the word Ambien more than once in these posts. I'm fairly sure that's what was giving me phantosmia. I cold turkeyed off the Ambien, suffered some pretty crappy nights but am sleeping better now (thanks to exhaustion) and the smells are gone.

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  51. I started Januvia and Avodart meds about three months ago. After a month or so, I started noticing the filled ash tray smell. I did not attribute it to the new meds, but did find another posting of someone with the same symptom and time frame after switching to Januvia. (see entry #812 at http://diabetes.blog.com/1162417/?page=17) I found no links to Avodart.

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  52. I was at work about 4 years ago and started to smell something like electrical wires buring. I asked my co-workers if they smelled it and they said no. I used to smoke about 8 years ago. Since my first "attack" sometimes I have the phantom smells and sometimes I never have them at all. I have since moved from the standard "stale smoke" or "burining wires" smell to very bizarre ones. For example, I was working with a co-worker and I think she had really bad bo. After she left, that's all I could smell all day to the point that I thought it was me (it wasn't, I know my bo smell, and this want it at all). We recently adpoted a puppy and he had been exposed to a skunk. So, guess what, I smell a faint skunk smell very often. I have had the sickening sweet smells and I'd prefer them to my current phantom. I am going to contact an ENT about it, preferably someone who really knows about it.

    Oh, and I know what you mean about the doctors looking at you like you're crazy. It certainly makes me feel nutty but it's beyond my control. When I say I smell something, my wife doesn't believe me because "my smell is all messed up." Actually, that's not true. I have an excellent sense of smell, it's almost too good. I can smell things that ARE real that no one else does until they get closer to the source. So, I keep my comments about "smoke" or "skunk" to myself. What is odd though is that I am beginning to know the difference between a phantom and a real smell. The phantoms are just annoying, but I am trying to live with it, but wish I didn't have too.
    Glad to find this site and read comments from others. It makes me feel a little better.

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  53. I am so relieved to find this site. I have been living with the smell of toast/over-ripe bananas or other indescribable smells for the past 3 years. The smells occur frequently throughout the day (almost continuously most times). Have tried perfume below the nose before going to bed to try to mask the smell. It's sooo irritating and no one seems to understand. I am not on any medication and have no other health problems. The condition started when we took delivery of a new pine dining suite, so I suspected some chemical treatment to the pine, and also following a viral infection (like flu). I have had a brain scan and all is clear. The ENT specialist prescribed an antibiotic nasal spray - useless. Always hoping to find a 'cure'. Meanwhile so relieved to hear others are like me.

    Anonymous

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  54. I am curious about the Candida angle. My symptoms appeared while I was taking tetracycline for a skin infection. Perhaps the antibiotics triggered a yeast infection which caused the phantosmia. I was sure my teenager was smoking in another room the first time it happened! If treating for yeast helps, I will come back and post!

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  55. I take no drugs, don't drink, and what I have been smelling lately is akin to , of all things, hamburgers, and it is beginning to drive me nuts. I smell it at work, at home, even on the bus to and from work.

    I think I am going to go in for a check-up, it can't hurt.

    The only explanation I could have is that I have smoked cigarettes for 25 years, and maybe something has gone haywire.

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    1. I realize that this is a 4 year-old post... but you are the first person I've seen who describes their smell as hamburgers... that's what my smell was too! It reminds me of McDonald's cheeseburgers, more specifically. It started after I had a sinus infection in April so I've been dealing with this for a few months. Other than that, I am a healthy, drug/alcohol-free 24-year-old female with no other (known) conditions. I did use an antibiotic (Keflex) to clear up the sinus infection this past spring, but I don't know if the antibiotic has anything to do with it. It's not one of the listed side-effects anyway. I tried a sinus rinse last week (the Flip Turn sinus flush, specifically http://www.medhelp.org/user_journals/show/2322/The-Sinus-Flush) and for one day the smell was completely gone! I did the flush one more day after that. On the third day, I noticed the smell coming back, but this time it was a different smell. Now it smells like the smoke smell everyone is describing. But I only get the smell when another odor is present, so I have parosmia I guess. When I had the cheeseburger smell still, it was really intense in the shower when I was using my shampoo/conditioner and other hair products. Also, artificial fruit smells were big triggers. Even my tap water started to take on the smell, which was really gross. I've also experienced what everyone else has been saying - real smells are less intense. I don't smell my dog... well, he kind of has the same smokey smell now, and skunk also smells like the smokey smell which is much more tolerable than the real skunk smell (bonus?). But I'm so sick of this distorted sense of smell! I want to smell all smells, good or bad! My nose used to be so sensitive, I was so proud that I could smell even subtle odors that most people couldn't detect. Now my smell is useless! I smell my hamburger/smoke smell and have to ask my husband what the smell really is. :( I'm continuing to try the sinus rinse since I did have some success with that. I need to make a doctor's appointment...

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    2. I'm so glad to see a more recent post. My smells are different from yours, one side is a burnt smell and the other is just foul, which of course makes it hard to eat, not to mention enjoy life. Sinus rinse has been helping me since 2007, but the symptoms have become more frequent :( also it's awkward always carrying around the sinus rinse bottle and clean water. I'm in fairly good health, I did used to get a lot of sinus infections. Thought sinus surgery would help, but it didn't and then I finally did the research and saw that the brain was involved. Did you ever find any better treatments thru the doc? I'm finally gonna see a smell specialist soon, hope I get some answers...

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  56. What I smell, far too often, is more like mildew; a damp, musty "basement" kind of odor and it is quite unpleasant. It is a quasi-taste, too, as if in my entire system. For a long time I figured I was hypersensitive to mildew or mold. But the smell comes and goes so frequently - when at work, in my car, at home - and no one else smells it. The only time I really don't smell it is when I am outside, breathing fresh air. I'm not eager to investigate the brain tumor possibility but just in case I will talk to an ENT and a neurologist!

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  57. I am 17 and never smoked. Never even thought about it. My brothers do but they are in the army and i never see them. I started smelling it randomly in my grandparents house while I was staying there. Nobody has ever smoked in that house. I do not take any medicines or have any problems and its highly unlikely I have a tumor. I dont know whats wrong...but that kinda blows the whole idea of medicines cause it out of the water.

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  58. hi, I am 37 and I get a phantom smell or taste evry month around my period. I have nasal poloyps and I cannot taste or smell any thing, except the hallucinations. I have had the smell of strong perfume up my nose for the past 3 days, it is driving me insane, but because I have had the symptoms for over 2 years I am not too worried. I do find it really odd though. :-(((

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  59. I also tend to get the smell of smoke around my period...sometimes after I smell it for a day, then 24-48 hours a migraine will come on. I only get hormonal migraines now (been a sufferer for 12 years and as long as I watch my other triggers...I get ovulation and menstruation headaches).

    I've been experiencing this for about 1.5 years. I had a CAT scan about 1 yr. ago. NO brain tumor. Sinus cavities clear.

    I've been dx w/ Candida in my gut...I've heard that MAY have something to do with it, but I can't find any other info about that.

    What I DO notice most prominently about it is it MOST OFTEN BEGINS AFTER I BRUSH MY TEETH! SO...I do know I have a bit of receding lower gums...but does ANYONE recognize their "smelling smoke" starts after they do that?

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  60. I have complete anosmia due to a head injury last summer, which included some kind of damage to the temporal nerve/lobe. About 5 months after the injury, I began to experience phantosmia virtually 24/7. It began as burned rubber. After a month or so, it would change occasionally. For a couple of days it was bar soap (as though I was chewing on it). Another time it was awful perfume for a day. One day rotting flesh. On a good day, it will sometimes be like old, chewed cinnamon gum. For the past few months, it's been urine-like. My neurologist prescribed neurontin, and when that didn't work at the initial dose, he had me increase the dose and eventually I reached a dose that does take the smells away most of the time, or at least greatly reduce them so they're no longer a distraction. I generally have to take it three times a day, because it seems to wear off after a few hours, but it's much better than suffering the smell/taste of urine all day! Hope this helps someone in a similar situation - it's so hard to find info online regarding this condition - another neurologist told me it would probably go away eventually, but I have no idea what he based that conclusion on...

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  61. Thanks to all who have posted because I think I havr my answer and I'm not worried anymore. God knows how much money in medical fees this has saved. I noticed a lot of medication users suffer from this, especially those takibg sleep aids like Ambien. My sleep aid is Trazodone, which is a weak antidepressant prescribed to relieve occasional sleeplessness. I cut the tablets in half and take once in a while if needed, so I didn't make any connection with my intermittent episodes of phantom smelling (burning electrical wiring) until I read all these posts.

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  62. I have had this problem for over a year. A smell I really can't describe occurs at home and at work. I stopped all medications for about two weeks (baby aspirin, multivitamen, Crestor, an omega-3 tablet) and it seemed to occur less frequently. Now I am trying nasal irrigation with a Neti Pot. Sounds gross but it actually feels good. I'm hoping it "re-boots" the system somehow. So far so good.

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  63. I found reading this posts really exciting: I'm not alone!! I smell something chemical for about two years now. Sometimes only a slight scent sometimes it literally takes my breath away. It lasts anything between minutes or several weeks and since nobody but me can ever smell it I already thought I'm going mad!! Thanks guys!!

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  64. I have been getting 'funny smells' for over 2 years now. First a burning smell, then burnt rubber and other various wiffs of soap, or chlorine and various others difficult to name. It started at the same time as I started getting unaccounted for chronic fatigue.

    By spring last year I was getting a variety of other neurological symptoms of dizziness, coginitve dysfunction, tremors and general wobblyines on my feet along with intermittent numbness and occasional dysfunciton of my right arm.

    After eventually being forced to take 7 months leave from my work when the fatigue became overwhelming I was given a working diagnosis of ME. In the intial stages of severe unwellness I was given a brain scan for tumor, which I am glad to say was normal. I have also had various other tests for MS, all of which are normal except for a dodgy EEG, which gave some indeterminate irregularity in the temporal lobe region of my brain.

    The smells are diminished, but still here. At their worst I had waves of really strong smells at the same time as other really bad neurological symptoms. I also think that they are worse sometimes when under stress or when tired.

    My GP thinks I should be checked regularly for MS just in case, because a negative test result for MS might be, in least in the early stages, becasue the tests are not sensitive enough.

    However I think it is ME, but will keep taking the tests all the same.

    It seems from other peoples comments that various forms of neurological damage are to blame, whether slight or more serious. But I am intersted to know if others have fatigue as well as the smells?

    By the way, I am much better now and back at work, although a certain level of chronic fatigue is still a problem. But at least I have my life back.

    Best wishes to everyone else how has this unusual and weird symptom.

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  65. Thank you for the information in this site--I just started having these symptoms a month ago and this week has been almost non-stop for the last few days.

    I saw the doctor today and he's sending me for tests, but does not feel that it's anything serious--need to rule that out though.

    I've joined the YAHOO group shared here and hopefully will be able to talk to others with this same "disorder".

    A part of me worries what other people think when I describe my symptoms because it just sounds so "crazy" to me--even though I know I'm not.

    Thanks for everyone being so honest and sharing their information--it helped me go to my doctor prepared.

    Hopefully will talk to some of you soon at the YAHOO group.

    Cheryl

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  66. I've been stressing for the last two hours until I found all your comments.
    I have bipolar disorder and am taking depakote and clonazepam(sp)and for the last week or so, I've been randomly smelling burning. At first I thought my kids had burnt some toast because that is really what it smelled like. Then I got paranoid that there was bad wiring in my house or something. Then I noticed it in the car or at work and knew that I wasn't really smelling anything.
    Now, I'm more worried about it having to do with what I've found online. A symptom of a seizure, stroke, or worse. Lot's of stuff about getting an MRI and your temporal lobe looked at. And of course I can't get a hold of my doc and it's a Friday night.
    I'm a little nervous.

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  67. Wow I can't believe all the people who have these symptoms. I have been smelling cigarette smoke for at least the past year. In my case it starts when I actually do smell real smoke (some of our neighbors smoke), but once it kicks off it goes on for hours or even days.

    I have severe allergies and am being evaluated for Churg-Strauss syndrome. I also just had a thyroid scan where they found lumps on my thyroid.

    Anyway in Churg-Strauss, cigarette smoke is very dangerous, so maybe that's why I fear it so much. I grew up with second-hand smoke which I always hated and now I have permanently damaged lungs as a result of the irresponsible actions of others. But I digress...

    Sometimes I also smell formaldehyde (very strong) -- usually when the house has been closed up. OTOH, the house is only 2 years old so this smell could be real.

    Anyway I thought I was losing my mind until I found this forum. I now plan a visit to a neurologist to follow up and I will post results.

    Best of luck to everyone here. Hopefully the medical profession will wise up to this condition as it seems to be more pervasive than one would think.

    P.S. Almost forgot - I take Ambien daily.

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  68. Interesting. My sister asked me to research this online and I am thrilled kind of, to find out that other people suffer this. For the past two weeks, I have been smelling stuff in my livingroom area only. It started off smelling like sawdust. I complained to my husband and daughter who said they didn't smell anything. How can't you smell anything, I queried? My brain felt like pulp and I felt like I was going paralized in my left leg. The next day, the smell changed into fumes like that from a car. Yet no one smelled it. I am not on any medication except for multivitamins. I did take baby aspirin three times for chest pain, then stopped because I hate taking medications. Anyway, the smell has now changed into burning electrical wires. I cleaned my living room from top to bottom. Washed the blinds, the cushions, swept and mopped and cleaned everything with a disinfectant. I couldn't even smell the disinfectant. Yet the odor persisted. I sent a text message to my sister who texted me back telling me it had happened to her daughters. She asked me eat some cucumbers and watermelon and to eat a clove of garlic daily. I hate the smell of garlic so that's out of the question. I went immediately to get some cucumbers and a watermelon. Lo and behold, after eating them, I felt a slight relieve from this smell sensation. She has asked me to continue eating these for a month and that if there is no improvement, I should see my doctor. I can tell you that the smell diminished the first day although not completely. So, I would suggest that those of you who want some relief should try this remedy. She also suggested a teaspoon of honey during breakfast. I am not into sweets. So, I am sticking to the veggie and fruit remedy. Try it. Good luck all! Helen

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  69. I have had migraine headaches for 40 years. I am a male, 65 years of age. I began noticing phantosmia on rare occasions a few years ago. It would happen a few times a year for a day or two, intermittently. I have now had it for the past five weeks, every day. The smell has always been the same, like a campfire that has had water poured on it. I had an MRI last week and have not yet received the results. I think they will probably be negative. I have also recently been able to hear my pulse in my right ear when sitting in a quiet place. Kind of a slow whooosh whoosh sound. My Doc checked for an ear infection with negative results. I sure hope this goes away soon. Its very unpleasant.

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  70. Lately everything smells like burnt popcorn. It's like it's in my nose because I can't get rid of it. No perfume of other scents change the smell. I haven't been around burnt popcorn so I don't know what can cause this. Any suggestions. Thanks.

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  71. This has happened to me on and off for most of my life. I usually smell peanut butter! I have a friend who's experiencing phantom smoke odors right now.

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  72. I began to experience a metallic, musty-like smell about 3 years ago, and it took several months to realize that it was hallucinatory in nature. In November of 2008, I was diagnosed with pancreatic cancer, and the oncologist suggested that the cancer had probably been present for 1 to 2 years before diagnosis. This would have been about the time I first noticed the odor. Throughout a four month period of aggressive chemotherapy in early 2009, the phantom odor decreased in frequency and intensity. The cancer is now in remission, but the phantom odor persists, often lasting for 3-5 days with intervals of 1-4 weeks without the odor. Prior to the chemotherapy, the odor was almost constant. I have assumed that the odor is a result of the cancer since my health has otherwise been excellent and I take no drugs. My oncologist is non-committal on the question of whether the cancer can be linked to the odor, but the timing and behavior of the odor suggest to me a probable linkage.

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  73. As a child I would get the metalic smell and taste sometimes after eating homemade buttermilk pancakes in a cast iron frying pan. It would last until I went to sleep and woke up the next day. In the past I have smelled bacon, and the most common cigaretts. The cigarettes I discovered, quite often come from someone walking down the street smoking a cigarette, sometimes there is no explaination though. The most recent and troubling is the smell of chlorine it is continueous and often lasts for days. I have no answer, but it is nauseating and follows me everywhere I go, in the car, to the store, to another town...can it be metabolicI wonder.

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  74. 5 Months ago, i spontaneously developed tinnitus. if you are not familiar with this term, it is simply "ear ringing". I have it in only one ear ans it is a high pitched continuous frequency, that just never shuts off. I saw an ENT and audiologist. They did numerous tests, one being some sort of audio/echo test to determine if I had a brain tumor. Which I guess is done when someone only has it in one ear. I was told everything was normal, and that there was no cure. All I could do is buy a machine, that would make white noise to mask the ringing. I bought the machine, and it does work. I just wish it was small enough to fit in my ear. Now, two weeks ago, I started smelling a ammonia /ozone like smell that no one else was smelling. It has since morphed into a more sweeter smell. I have it all the time, along with my ear ringing. I told my PCP to refer me to a Neurologist. He did that on Friday, so I will be calling first thing Monday. I do have one other strange symptom, that I have had numerous times over the past few years. Anytime, I get very upset, my left side of my face , from the top of my head to my neck goes numb.this is the same side of the ear ringing, and the phantom smells seem to be stronger from my left nostril. Could it all be related? Well, hopefully this neurologist will have an answer. I'll keep you posted.

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    1. Since 2010 have you improved. I have the one sided ear ringing and the ammonia smell and now the burning smell. Please post what happened and you answers after seeing a neurologist.

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    2. I have the same as the above with one sided ear ringing and first ammonia smell and now the rotten meat smell and burning in nose. I have anxiety so think it may connected as all the old symptoms are gone and now this started up with first smelling ammonia, then mold, cigarettes, and now the rotten meat smell. I also cannot taste anything. I had post nasal drip for years and so have started to take the Sinus Wars product for taste and smell to see if this will work. I started taking Olive Leaf Extract 500mg. morning and night and my ear ringing went away. I read where it is a fungal infection in a person's nose. I also am going to try vitamin O. It has helped people with many problems. A lady said she squirts it up her nose and she no longer has sinus problems. All I can say is that I would love to smell and taste again.

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    3. I had to order another bottle of the Sinus Wars for smell and taste and they said to take three pills a day instead of only AM and PM. so I am still on it. Some other person said it worked for him on another site. Has anyone out there had anxiety? I used to have bad anxiety with panic attacks and also have rhinitis that I think may be caused by an allergy to some foods. I no longer have the bad anxiety but now have this smell and taste problem. I usually get it worse in the evening when I am overtired. I will develop a slight headache, stomach ache sometimes and the smell gets very bad. I hope more people keep writing in on this subject so we can solve the problem.

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  75. I am excited to see so many others that have the same issue! Well, I'm sorry at the same time. I have had the "cigarette smell" since 2007, an abnormal EEG, but the docs cannot decide if it is a persistent aura without the infarct of a magraine (meaning we get stuck in the aura stage and not migraine)usually the criteria is that it is a false sense of smell lasting at least 7 days or more. Or the neurologist thinks its seizures, only when I have the symptoms for 16 days, I could not be having an ongoing seizure for that long! Just had a PET scan today to check for brain tumor, which of course will be negative. On the flip side to make matter worse I was diagnosed by blood test of having Lyme Disease in 2007 and you know the contraversy on all of that, CDC vs ILADS guidelines, the politics of medicine! The government wants to ignore the thousands of people ill from Lyme Disease. My lyme literate doc feels Lyme is back. Has anyone been tested for Lyme Disease? Demand it, and it will open up another can of problems within the healthcare industry, the politics. Why do the docs try to not run the tests? Funny, are they afraid of the results and not sure what to do with a person who may be positive? As you can see, I have had my go around with the ID docs, my GP, the neurologist, oh and a rhumatologist....they all pass the buck and would rather run more expensive tests than to remotely think that even after my treatment, I just may possibly still have the nasty critter...it can afterall invade all the body and it can mimic any disease...spunky

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    1. I have Lyme and I am sure that is why I have the phantosmia. Another symptom in a huge list of symptoms. More accurately I think it may be Babesia that is causing it, as that causes neurological problems and sweats. I get nausea, dizzyness and sweats with the smoke smells.

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    2. I am just now starting to do research as I have been smelling car exhaust really strongly now for two days, it feels like I'm suffocating in a room full of car exhaust, along with burning eyes, ringing ears, and a tightness at the back of my head. It's so strong it makes me nauseated. I am really scared..calling an ENT Dr tomorrow..

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  76. There is a group on Yahoo, the Parosmia/Phantosmia Support Group. Please feel free to join there as well, I am one of the moderators. We have lots of helpful people on that site.

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  77. So glad to see there are others that have smell problems. I have been smelling cigar smoke for months. Once something sets it off, I smell it for days. It is driving me crazy. I mentioned it to my doctor at my last physical and her only comment was that your brain changes as you get older. I just turned 60. I have tried putting perfume under my nose, rubbing alcohol, etc. Nothing gets rid of the smell. My tongue also begins to have weird sensations after a few days. I get a headache after the smell has persisted for a few days. Any suggestions?

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  78. What I have is Parosmia. It's only triggered if there is a real odor present. But, it overtakes the real odor. If that makes any sense. I can't even give an example of what it smells like. I had an MRI, and it came back clean. It's very frustrating. And it affects the way everything tastes.

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  79. I have suffered from phantosmia for 8 years and experience a strong burning smell. My taste is also distorted which makes eating anything rather awful. I was told that phantosmia is brought on by serious head trauma and I had a brain tuma removed 21 years ago. My husband and I have worked out successful ways to stop or relieve symptoms and I would like to share them with you. Phantosmia tends to only be experienced through one nostril so try blocking one. If this is the case then a nose plug proves very useful to give some temporary relief especially at meal times. To stop symptoms altogether I have found that building up pressure in your head 9 times out of ten will do this. Simply hold your nose and blow (like clearing your ears) do this for at least 10 seconds to build up as much pressure as possible. Immediately afterwards go on all fours and put your face to the floor, close your mouth and push through your nose. This makes all the blood rush to your face and you will feel the pressure build up in your nose area. Hold this pose for 10-15 seconds and when you up right the bad smell is usually gone. If not repeat for longer or try blowing your nose first. I have found that the symptoms will be brought on by sneezing, sniffing, strong smells or a runny nose. I hope this perhaps will bring some relief to others and please let me know how you get on.

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  80. Hello My name is Charlie. I have an odd one myself. I lost my sense of smell at 17yrs old due to a fist, nose related incident. I have not smelt anything in 12 yrs untill 3 weeks ago, now all i can smell is what i assume are mango's... Plesent but slighly disturbing... Not the biggest fan of doctors.. As hate wasting their time... Stupidly told my girlfriend and now she is on my back... To see a doctor or not???? my email address is charliebennett@hotmail.com if any one can give me a heads up be most appreaciated.

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  81. I have started experiencing the cigarette smoke odor, can only pinpoint it started about a week ago but I'm thinking it may have been going on longer than that (if it has I owe my neighbors an apology lol). It's literally driving me crazy, I can't sleep because it seems to get worse when i lay down. I'm gonna go see my doctor because at this point I don't know what else to do. I made the mistake of telling a couple of family members.....they gave me the nod and smile which means "she's lost it". So looks like I'm on my own.

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  82. I'm 53 year old female and just discovered that I must have phantosmia as well. The first few evenings I thought my husband and son had been around cigarette smokers. The third day I had the smell all day and that led me to the internet. It's like I'm cleaning out wet, dirty ashtrays, and the ashes are going up my nose. It burns my throat and nose and makes me cough and gag. I get it in the car and other people's houses. I get some relief going outdoors, drinking hot tea, and while sleeping although it has woken me gagging twice this week. It's been 9 days now. It goes on all day, but is worst when triggered by toast, dust, the oven, cooking smells.
    I now realize that a few weeks ago I must have been having the same experience, although with a different smell. I thought my body was rotting. I smelled a fruity, pooey, rotting old lady smell. Showers and changes of clothes did nothing to relieve it. My husband said I didn't smell but I didn't believe him. After two or three weeks the smell gradually went away.
    I've had a mild muscle headache for a while now, but attributed it to neck strain. Also admitted to the doc that I've had what might be micro-blackouts over the past couple of years, just when wakening or falling asleep. I take medication for mild hypothyroidism. Occasional 1/4 tablet of Zopoclone for sleep assist. Also occasional Pariet for acid block.
    Now I've been to my very receptive doctor and she's ordered an urgent CT scan and blood work.
    Thanks for all your posts, if it wasn't for the internet I would think I was going crazy.

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  83. I have been dealing with strange (although not too unpleasant) odors for about a year. I have been diabetic for 46 years (type I) and with the progression of the diabetes has come extreme peripheral neuropathy...the conclusion from my doctor is that the nerve damage (because it damages the nerves throughout the body) is the cause of my olfactory hallucinations. I usually smell the odor of someone baking cookies BUT with the addition of a lot of vinegar or something else very astringent. Or, I will smell Pepperoni Pizza, except that the pepperoni smells ten-fold the strength it should be!! Not gagging or life altering...just extremely annoying!!!

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  84. I have been dealing with this for at least twenty years on and off. It comes in waves. The order is chemical or metallic in nature. Nothing masks the order! I will share what has helped me. I found that when I sit in a tall chair, listening to new age or easy listening music, the order subsides! I discovered this last might! Music therapy is key because it relaxes you and changes your focus. By the way, my chair had a tall back. It does not cure the orders but it alleviates them. I am going to keep doing this until they find a cure. I inhaled in deep breaths for thirty minutes while the soft music played, no orders! When I got up afterwards, the orders came back. I find relief in knowing that other people have this condition. I have a mental illness, and find that being told that my condition is because I have an emotional disorder useless! I fear getting Parkinson's Disease or Alzheimer's Disease later. I hope the music therapy will help, give it a shot! Best wishes to all.

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  85. Correction: I intended to spell odor not order! I an 53 yrs old and started getting this in 2000. It certainly is annoying, but I have found that the position of my head and listening to soft music helps somewhat! Haven 't tried inhaling Coffee Beans. My heart goes out to everyone who has this condition. Hope they find a cure.

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  86. I am glad there are others experiencing this phenomenon. I have been smelling smoke too - the toxic kind of smoke you get when oil burns. Stovetop cooking smells seem to trigger it the worst and it lasts several days to a week. It has been driving me bonkers!!! I have to put strong perfume right under my nose because I can't deal with smelling smoke 24/7!. This doesn't kill the burning smoke scent entirely but it makes it a bit more tolerable. I have not had any brain injury and I don't take any meds. What could this possibly be??

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  87. Does anyone know if this is related to PTSD? Or Trauma? I'm recently overcomming a Hx of Domestic Violence and just within the past 4-5 months have been smelling smoke when there is no smoke. I can't seem to find anything that says this can be related to Trauma...and the whole Brain Tumor thing is sort of freaking me out....

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    1. Do you drink coffee? I started to get the smell of smoke for some months in 2014 and decided that I would try getting off coffee as coffee beans are roasted (hence possible smoke smell) I thought it was worth a try. I'm pleased to report that it has now stopped happening, also I'm now not addicted to caffiene which is a plus as well. I will now occasionally have a coffee and it doesn't seem to bring back the odour of smoke smell in my nostrils. It was horrible.

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  88. I Would get an MRI, in 2007 I started to smell a strong odor, smelt like burning wires or a strong gasoline type smell.. 3 Months later I was diagnosed with Transverse Mylits, inflammation in the spinal cord, caused by a viral infection.. I was paralyzed from the waste down... Now I walk with a cane.. So if you are smelling those smells get it checked out!!

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  89. To be honest I can't say I'm happy to be posting here but I am very grateful to those who have put this blog together. I'm male, 51 years of age, active and otherwise in good health. It's been less than a week for me. In hindsight I think it stared a few months ago, I would complain when my wife prepared anything fried in oil or baked in the oven. Coffee was the thing that set if off fully. I started grinding a aromatic dark roast a couple of weeks ago and after repeated exposures the smell of burnt coffee got "stuck" in my nose. First day was curious, second was horrible as the smell would not go away. Now it's on and off but worse in the evening. I'm trying to maintain my normal routine, without coffee! I guess we'll see where this goes. Good to know there is support out there for this.

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  90. Nice to see this blog too. I'm a scientist and have had phantom cigarette smoke-like smells off and on for about 10 years. When I first noticed it, it was at work, I thought the outside maintenance workers were smoking outside the building or on the roof. Later, I realized that the smells were not just at work. Interesting, the phantom smells (phantosmia) seemed cyclical. Once I started taking bioidentical progesterone for other conditions, the smell subsided then went away. As I've gotten older, it has returned even with my standard daily low dose of progesterone. Increasing the progesterone dose made it go away again. It happened most recently coinciding with ovulation. This is when estrogen is highest and progesterone lowest, so, for me, it may be related to estrogen dominance. It has been reported in the scientific literature to occur during pregnancy. If this is one of the causes, estrogen dominance, that it occurs in males is not unexpected, they have and need both estrogen and progesterone. Alcohol can increase estrogen and the need for it to be balanced by progesterone, even in men. Phantosmia is not very well studied in terms of what is happening to cause it, whether it is neurological or biophysical. There are probably different causes depending on the type. For those with ashtray/cigarette smell like me, women in 40's-50's, from my physical perception, it could be due to the interplay between estrogen and the thyroid. Excess estrogen may cause a release of factors from the thyroid. The smell might be due to excess circulating iodine-containing hormones. This is just a theory and suspected. I don't have a thyroid problem. If your smell is cyclical, you could try progesterone cream. Taking bladderwrack (seaweed) for a couple of months might also help. Research shows it can lower estrogen and raise progesterone. Take it only for a limited time since too much iodine or of any metal ion such as iron can be harmful. They are oxidizers. However, they are essential and if you are deficient, some supplementation is needed. These are just observations and what has worked for me. Most doctors won't know about progesterone for phantom smells, or about seaweed. The use of progesterone is just from personal observations and is not documented. If you're interested, you can search 'bladderwrack' (or fucus vesiculosus) and 'estrogen' at www.pubmed.com. Seaweed was studied because according to the authors "epidemiological studies suggest that populations consuming typical Asian diets have a lower incidence of hormone-dependent cancers than populations consuming Western diets. These dietary differences have been mainly attributed to higher soy intakes among Asians. However, studies from our laboratory suggest that the anti-estrogenic effects of dietary kelp also may contribute to these reduced cancer rates." As always, best to discuss the safety of any intervention with your physician. I hope this information from personal experience is helpful. Wish you all luck.

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  91. I have had problems with my sense of smell for three years. Sometimes smells linger. Sometimes I smell things that are not there at all. I know that there are three steps in the sensation of odor: You smell something. You get used to it. Then you don't smell it so much anymore. This is called habituation. My theory is that a neuronal defect in the habituation process causes smell to stay strong even after the original odor is gone. Strange smells that stick around may be caused by random activation of our smell "memory bank".
    I have found four things to do that help make the condition tolerable: The first is to divert the mind with work, entertainment, conversation, etc. The second is meditation. Turning the mind off to all sensation can help with the oversensitivity of the nose. Third is to breathe through the mouth. And fourth is to wear a nose clip. I use all of these methods in various combinations to reduce the severity of the condition.

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    1. Yes, I too have had this condition for near 4 years now. First started on a trip to Chile. I'm from the USA. My smell is something that I cannot pin point it to being like anything. I can only describe it as 2 similar smells. My bad smell is like a sweet fermented smell. My worst smell is like a bitter fermented smell. I have bad days, and very bad days. There is no escape from these smells. Only relief is sleep. Like you diverting the mind helps, and thinking that are many people in this world that would gladly trade their problem for mine anytime. I have pretty much forgotten what food is suppose to taste like, and I miss that very much. I have been to the Mayo Clinic, have had 2 sinus surgeries, and consulted with Dr. Leupold. Has come down to, either take anti convulsive drugs for relief, which I refuse. My path has been living with it, staying busy, appreciating my otherwise excellent health

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  92. I have been having the same symptoms for about three years now. It started with the smell of smoke, at work and at home, intermittently. Then it changed to a sawdust/mice feces mix smell. Then for about a year it was a sweet chlorine/bleachish smell. And I am happy to report it has changed again to a flowery/fabric softener/chlorine-ish smell that is not too unbearable. And they have all been intermittent. Sometimes I won't smell it for a week, and then it will return sometimes for hours, minutes, or just wafts. Just recently I started having extreme dizziness with nystagmus. Doctor says that is BPVD, I think is the name. He is not interested in the phantosmia symptom at all. After a particularly bad episode of vertigo caused by presumably BPVD, I had a CAT scan in the ER. That is clear, thank goodness. So I will stay current with this website. I can live with the smell, no biggie. Just wish it could be explained. Is it unreasonable to ask for an MRI, I wonder? It would be nice just to KNOW there is no tumor, benign or otherwise. I am almost 50, and the symptoms cropped up after a particularly bad flu. Relieved to find this is an actual "thing" and not in my head. I do not take Ambien or any other medication, by the way.

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  93. I have been having the same symptoms for about three years now. It started with the smell of smoke, at work and at home, intermittently. Then it changed to a sawdust/mice feces mix smell. Then for about a year it was a sweet chlorine/bleachish smell. And I am happy to report it has changed again to a flowery/fabric softener/chlorine-ish smell that is not too unbearable. And they have all been intermittent. Sometimes I won't smell it for a week, and then it will return sometimes for hours, minutes, or just wafts. Just recently I started having extreme dizziness with nystagmus. Doctor says that is BPVD, I think is the name. He is not interested in the phantosmia symptom at all. After a particularly bad episode of vertigo caused by presumably BPVD, I had a CAT scan in the ER. That is clear, thank goodness. So I will stay current with this website. I can live with the smell, no biggie. Just wish it could be explained. Is it unreasonable to ask for an MRI, I wonder? It would be nice just to KNOW there is no tumor, benign or otherwise. I am almost 50, and the symptoms cropped up after a particularly bad flu. Relieved to find this is an actual "thing" and not in my head. I do not take Ambien or any other medication, by the way.

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  94. I have been having the same symptoms for about three years now. It started with the smell of smoke, at work and at home, intermittently. Then it changed to a sawdust/mice feces mix smell. Then for about a year it was a sweet chlorine/bleachish smell. And I am happy to report it has changed again to a flowery/fabric softener/chlorine-ish smell that is not too unbearable. And they have all been intermittent. Sometimes I won't smell it for a week, and then it will return sometimes for hours, minutes, or just wafts. Just recently I started having extreme dizziness with nystagmus. Doctor says that is BPVD, I think is the name. He is not interested in the phantosmia symptom at all. After a particularly bad episode of vertigo caused by presumably BPVD, I had a CAT scan in the ER. That is clear, thank goodness. So I will stay current with this website. I can live with the smell, no biggie. Just wish it could be explained. Is it unreasonable to ask for an MRI, I wonder? It would be nice just to KNOW there is no tumor, benign or otherwise. I am almost 50, and the symptoms cropped up after a particularly bad flu. Relieved to find this is an actual "thing" and not in my head. I do not take Ambien or any other medication, by the way.

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    1. This is Shelleyw again. It is now 2021. I no longer have the phantom smells. My sense of smell is extremely diminished. It is odd, as I can smell "good" smells like bread baking, candles, but "bad" smells I can hardly smell at all. Changing my grandchildren's diapers are simply not a problem for me. I was just diagnosed last August with a brain tumor. It is pressing on my sixth nerve and causing diplopia. MRI results suggest they cannot clearly see exactly all of the tumor. My neurologist seems confident it has nothing to do with my lack of smell or phantom smells. So okay, if he says. It does seem odd though. I will post again if I have any new news.

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  95. Shelleyw, look at this link. may help.
    http://chemse.oxfordjournals.org/content/27/7/611.full#sec-5

    Been to Mayo and I have had MRÍ's, CT's showing no tumors. Went through 2 sinus surgeries. The ENT there sent me to a Neurologist at the Clinic, he showed me this document on that link. I briefly communicated with Leopold by email. No help.
    The Neurologist suggested anti-convulsive, or anti-depressants to slow down the olfactory firings to my brain. I refuse to take those drugs.

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  96. I get a strong smell of smoke that is so bad and I have no idea what to do anymore. I had an MRI of head and apparently nothing there. When the smoke smell comes on I get headaches, and severe hunger and thirst plus feel nauseous and dizziness too. I also get extreme fatigue as well that comes in waves and chest pain or palpitations. I cant figure this out. It might be hormonal...but cant get any clear answers from any doc :(

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  97. Private, sorry that you are experiencing these issues. Sounds like more than phantomosia. I have been diagnosed with phantomosia over 3 years ago at the Mayo Clinic. It took nearly 1 1/2 years to get that done. Local doctors had no clue what to do, so they really did not care. You need to go to some place that wants to help you. You have many combined symptoms that I do not have. I was wondering if this site was dead, I posted here 8 months ago and have not seen any activity since. Good luck

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    1. Hi Anonymous,
      All comments here are moderated. I still get posts from people from time to time, and publish them as they come in and I catch the notification, but it's not very often. So the site isn't dead, per se, but not really busy.
      Thanks for stopping by! Good luck with your condition.

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    2. Thank you Ultraviolet. I have been watching the sight now for well over a year. On bad days I will look to see if anyone has added anything. I wrote a ramble, not sure if it is for someone else, or for me. Post it if you think someone may find it helpful.

      MY STORY: PART ONE
      From Iowa, looking back the first I noticed my phantosmia was on a agricultural business trip to Chile. Date was March 8th-20th 2013. My first time overseas, so I was vaccinated prior to leaving. At that time I was 59 years old. The trip helped confuse my first recollection of the phantosmia symptoms. Being out of my environment I had no idea whether my symptoms were me, or the new environment I was visiting.

      Looking back, while I was in Chile I remember talking to my wife on the phone in the evenings. I told her many different times that the bread tasted very different down there. I really did not notice a strange smell that I could not say was not from the area I was in. My first early signs were tastes. Another early sign was smelling food I ate 30 minutes later. Let me explain. I would travel 20 miles south every day to Paine to help improve harvest activities. Then would travel back to the hotel in Santiago. I would not get back to the hotel till 8PM. Instead of going out to a restaurant for supper I opted to just go to the neighborhood grocery store for fresh fruit, and a pastry. My big meal for the day was in the afternoon. 3 nights before leaving to come home I did the fresh fruit and pastry again. I ate the fruit, and half the pastry. Putting the other half of the pastry back in the bag for the next morning. While working on the computer for a half a hour or so, I smelled a strange, strong somewhat horrible smell. For whatever reason I reached over and grab the bag with the pastry, opened it and took a fife. Oh, gawd that was it. I closed the bag and put it in the hallway to be taken away. Next noticeable odd smell was my natural gas. It smelled very similar to the pastry. Thinking this is very odd. When ever I past gas, I smelled this strange smell. I had stomach pains, rumblings and lots of gas, which went on for several days. On the 10 hour plane trip to Dallas. I thought I would be thrown off the plane for passing so much gas, and what people think of the strange smell. I had no idea they were not smelling the same thing I was smelling. When home, the next day I went to the doctor. He thought I probably picked up a bacteria in my intestine and prescribed 2 different antibiotics. I took those for 2 weeks. The rumbling and pain stopped, but everything smelled odd, and food tasted rotten. The horrible pastry smell was not on me 100% of the time then. (not knowing then) But my smell was triggered by other smells. I had no clue what was going on. Certain foods would make me gag. Foods I loved. I would walk into the local grocery, I would get close to the bakery, and I would feel as if I could throw up. Several trips to local doctor. After 2 months of this I went back the the doctor again, and he sent me to a local ENT. I went to the ENT told my story, and he sat there and told me he believed every word I said, where do you want to go, Mayo, or Iowa City. He made a appointment at Mayo with a ENT that he recommended.

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    3. MY STORY PART THREE
      Living with this condition long term is challenging. For me it is a very hard thing to explain to others, specially in the early stages. People would ask me what the smell is I smell in place of the actual smell. I don't know!! The smell I have is not something I have ever smelled before to put a name to it. Believe me, I have had plenty of time to try and compare it to, and to this day I cannot compare it to anything. It's like I just can't put my finger on it. Early my symptoms seemed to be triggered by other odors. Explained to me as olfactory false signals to my brain.In other worlds phantomosia. I would have 100's of episodes a day. Not always lasting longer than what the odor was present in the air. I would have some episodes that would last longer, and rare occasions when it lasted longer I think it was actually the correct smell that triggered my episode. Like the time I drove by some workers repairing a gas main. I drove by and I smelled natural gas, I thought cool may be my smell is coming back. Only problem was 10 miles away and 6 hours later from the location I still smelled the natural gas. As time went on, and my problem started to mature, my sense of smell deteriorated to the point where all I had now was 2 smells in my life. One smell is constant 100% of the time and got many times stronger when there were other odors present. I am in this state about 60% of my days. At one time I could say it was like a sweet fermented smell. This is obnoxious and very tiring by the end of the day. I am conscious of every breath I take all day long. My second smell also constant 100% of the time is with me at least 40% of my days. At one time I could describe it as a very bitter fermented smell, 1000 time stronger all day, every breath, no escape, and I feel like killing myself by bedtime. Sleep is the only total escape I have. First breath when I wake can tell me if I am going to have a obnoxious day, or a very very bad day. When I am having a very bad day, it never gets better in the middle of the day. During a obnoxious day, it can become very bad just from a different odor. Sometimes I get the very bad days 7 days straight. I have no clue what triggers the very bad days. Weather, humidity, foods, tired, well slept, exerciser, activities, nothing seems to be a consistent trigger to my very bad days. Lately I have been experiencing more bad days than I did in the past.

      Having phantosmia, has effected the way my food tastes to the point I am not sure what I am eating by taste. Most everything tastes horrible to the point I have to ask my wife or family member if my food is OK to eat. It tastes so bad I do not know if it is safe or not. I only look forward to meals because it cures my need of hunger. Things that are OK like cold liquids, such as milk, water, juices, sweet fruits. I like things that are sweet. Not that it tastes good, but the sweetness is pleasurable. I found I was eating to much sugar, so I pretty much quit eating that stuff. Foods that have a mixture of different tastes are horrible. I have pretty much forgot what food is supposed to taste like.

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    4. MY STORY PART FOUR
      Mentally, phantosmia is draining. For about 3 years I found myself feeling sorry for myself particularly on the very bad days. On one of the better days, I realized that I am not in pain, I don't have cancer, I do not have Parkinson, nor MS. For that matter I have 2 of my senses screwed up. What if it was my sight, or hearing. My gawd, I am lucky and don't know it....... Many people would trade their problems for mine in a instant. This attitude works for me most the time. But 7 very bad days in a row is tough. You do feel alone
      ,
      I found things that make the days go better are conversation, keeping myself busy as possible, exercise, sex, and generally doing things that I really enjoy. The smell is always there, but distracted.

      Often wondered some of the possible causes. Chile dirt in the air, or smog. Farm chemicals I was exposed to in Chile. The yeast in the breads I ate, or the vaccinations I received prior to leaving the US. Or maybe I was just plain lucky.

      I am currently 63 years old. Mostly fit, for the last 29 years I have ran most everyday. I take no drugs. I have no illusions that there will ever be a cure for this condition.

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  98. I am happy I came across this blog. I don't feel as crazy as I did. This odor (mainly smoke) has been present continuously for 3 days now. I thought I was about to have a stroke. Then I read some medical info that said it could be something serious to something as simple as a cold. I called my doctor but ended up embarrassed because I sounded like a lunatic when I tried to explain why I need an appointment. I actually said, "I smell smoke, like cigarette smoke but nobody's smoking". If that doesn't sound a bit off....anyway, now I am reminded about times over the last few months where I was complaining about other phantom odors but they were not continuous. My question is this....Is thete a treatment that works, Should I make an appointment to seek medical advice or should I just ride it out? Like others have said, It gags me, makes me feel nauseous and a bit crazy.....help?

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    1. MY STORY PART TWO
      Mayo was helpful. Many appointments. Luckily I was only 100 miles away. My CT's and MRI were clear of tumors. My sinus's were full and I had polyps. The ENT thought the smell may be coming from my right maxillary sinus. Surgery was scheduled, and the outcome was no change. My left sefiniod sinus was also full, again surgery was scheduled and the outcome was no change. We tried a liquid cocain drip directly on my olfactory lobes. Hoping for total loss of smell, or cure. Again, no change. The surgeries were not a total loss. my quality of like was much better as a result. Phantosmia was mentioned throughout all of this, but we wanted to rule out all the other possible causes. I was having periodic smell tests throughout the coarse of the year and a half at Mayo. First test should I had about 50% correct. My last test should nearly all gone. I saw a neurologist at Mayo. He showed me a paper on phantosmsia. LINK http://chemse.oxfordjournals.org/content/27/7/611.full#sec-5 As I read this, I was amazed, all my symptoms were explained. Finally, something that made me feel like I was not going insane.
      All along I was wondering and asking how this happened to me. His reply was "more likely than not" I went to a foreign environment my body was not use to. I contracted a bacteria which migrated to my sinus, and damaged my olfactory. His suggestion was anti convulsive, and or anti depressants to slow down the false signals to my brain.


      My Mayo ENT put me in contact with Dr Donald Leopold. I was told that he is the person that knows the most about these problems. After a few short emails, he told me the problem was actually in my brain now, and there was nothing to be done. He also suggested anti convulsive, and or anti depressants to help relieve the symptoms. This was 2 years ago, and I have not tried those drugs. I do not like putting drugs into my body for fear of trading for other problems. I know what I have now, I don't need something worse.

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  99. I’ve had thyroid tests that are borderline, may be time for meds. Also read that perimenopausal women can experience this. Anyone?

    http://fluoroquinolonethyroid.com/book_page/how-my-flox-symptoms-were-affected-by-th-and-iodine/phantosmia-that-chemicalsmoke-smell/

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  100. This is Shelleyw again. It is now 2021. I no longer have the phantom smells. My sense of smell is extremely diminished. It is odd, as I can smell "good" smells like bread baking, candles, but "bad" smells I can hardly smell at all. Changing my grandchildren's diapers are simply not a problem for me. I was just diagnosed last August with a brain tumor. It is pressing on my sixth nerve and causing diplopia. MRI results suggest they cannot clearly see exactly all of the tumor. My neurologist seems confident it has nothing to do with my lack of smell or phantom smells. So okay, if he says. It does seem odd though. I will post again if I have any new news.

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