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Chiari Malformation Community
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Avatar universal

Phantom Cigarette Smoke Smell

Does anyone else experience "phantom smells"?  I smell cigarette smoke on and off (no one around me or in my home/work place smokes).  It's not all the time, but sometimes it's very strong.  I mentioned this at TCI and the MD recommended a 24 hour EEG if this keeps happening as it could be a type of seizure.  I'm having a sleep study done later this month and the sleep MD agrees and says that the EEG I'm hooked up to during the study may pick this up.  Anyone else have this?
64 Responses
620923 tn?1452919248
COMMUNITY LEADER

  Hi...I know we had this discussion b4....I will see if I can locate the threads....but I know this was an issue for a few of our members .

hmmmm...I have issues with certain smells but not phantom smells....so , the seizure dx is interesting in that I do know a few member also developed  them post op, but I am not sure if they r the ones that had the phantom odors????

  "selma"
1157044 tn?1318303724
I have to say I have this on/off issue all the time.  I sometimes can even taste what I smell.  Whether there or not.
Often I find my sense of smell is exaggerated.  Way exaggerated.  At these times perfume smells can nearly make me feel ill.  
I have MS (multiple sclerosis) this is the cause of my issues.   Of course there could be other reasons for yours.
Good luck with the sleeping EEG identifying the cause is half the battle then at least you have closure with that.
620923 tn?1452919248
COMMUNITY LEADER
Avatar universal
Hi Selma,
Thanks for the thread...and to "missing_me", thanks for the validation...it's nice to know I'm not the only one who has ever experienced this.  It's really weird....it comes and goes; however, there are days when the smell is constant.  I work at a high school, so I always think that I might be catching a student smoking in the building...however, it never turns out that way!!
1664208 tn?1332786550
I often smell & taste them. I never noticed it before I had surgery only afterwards.
Avatar universal
I can not believe that you have this !  I went to my GP months ago and told her and she stated that it was called phantom smell.  I truly thot someone was in my house smoking! I do not smoke, my windows were closed and it was raining..  This was prior to me finding out that i had CM...  She believed me, but she wasn't sure why I was having this issue. I am sorry that you experienced this, but I am happy to know that someone else is too !
Avatar universal
Does yours come and go?  Mine does....I am hoping that my sleep study/EEG sheds some light on this.  Thanks for the validation!!!
Avatar universal
hi...thought it was just some odd thing with me but i often smell gas like there's a leak or
gasoline smells--and it feels like i can taste it as well...definitely an off and on thing...usuallly seems to just come out of nowhere--i've always seemed to have a hypersensitivity to smell even before diagnosis/surgery...but the phantom gas smells have definitely become more pronounced in the years following surgery
Avatar universal
I smell smoke occassionally. I noticed lately that smells will bring on a headache or dizziness quickly.  Today the lawn guy came and the smell of cut grass was so strong and I ended up with a bad headache and dizziness.  So bad, that I had to lay down.  There are a lot of smells that do that to me now.  Febreeze is really bad for me.  I can no longer use it.
Avatar universal
I know what you're talking about....I can't go into craft stores because of the overwhelming smells from various sources!
620923 tn?1452919248
COMMUNITY LEADER

I have always had issues with different odors...such as perfumes or perfumed laundry detergents, deodorants....

I gag when sitting behind someone that showers in their fragrances....yuck!

But, I also got rashes from most perfumes too...neone else?
Avatar universal
I love perfume, but I notice that I can not waer certain ones anymore bc they will cause headaches and dizziness.  Odors have become a big issue for me.
Avatar universal
A year ago I started smelling something chemical, almost like gas...no one else could smell it...I would swear I thought the central air unit was leaking freon...I also noticed that as soon as the smell started I would get a headache and dizziness, then I would have a sinus infection for days...Now in the last 3 days I have been smelling cigarette smoke where there is none...I have horrendous headaches and can't sleep for more than an hour or so before the pain wakes me...it wasn't long after the smell started that I felt a sinus infection coming on too...now I have a full-blown cold! I can't get any of my doctors to comment on it...I hope it is only a symptom of sinus infection...if anyone knows what to do please let me know...I am so tired and in so much pain and the smell keeps me nauseated!!!!! HELP!!!!
Avatar universal
Hi...sorry to hear you're not doing well at the moment.  Have you ever tried using a Netti Pot?  It's a small tea-pot looking device that you fill with salt water (you can buy these at drug stores) and irrigate your sinuses.  I, personally, cannot use this right now as I have tubes in my ears; however, I know friends who swear by them.  It's totally drug-free and washes away the "yuck" in the sinuses.  Hope this helps.
1457748 tn?1317578765
I too have often smelled chemicals, gases, and stale cigarette smoke that no one else can smell...It isn't followed by a sinus infection though just odd that I can smell these kinds of things. I will, however get headaches followed soon after smelling these odors. Every morning when I wake up my bedroom smells like an ash tray to me, but my husband doesn't smell it. No one in my home smokes so I have no idea why I smell this....

Also, anytime I have to have an IV I can taste and smell the IV fluids as they flow through my veins. I have ask the nurses that put in the IV's about it and some have said that once in awhile someone will tell them that they are able to do that, but they don't know why...I guess maybe my taste and smell are just very sensitive idk
1769279 tn?1315018920
I've noticed lately that sweet tea at certain fast food restaurants taste like cigarette ashes are in the tea. I've commented to several people.  
1387052 tn?1279654566
I often smell things that aren't there and will taste cigarette smoke/ash in a bottled soda, like a 20oz coke or something. I'm so glad to see that I'm not alone!! I thought it was just me. Yet another "joy" of Chiari, lol!!
1827123 tn?1383868876
Wow! Loving this forum!  I am learning so much reading through the postings. I had no idea so many of the things I have experienced are CM related.  I smelled the gas smell at work-several times! My co-workers husband works for the gas co. and sent a guy twice to test. He found nothing. And I get the cigarette ash taste in my mouth a lot.
Thanks so much to all of you for sharing your experiences, helps to know its a real thing and not in my head!
1769279 tn?1315018920
U know, I wouldn't say what I do to just ne body. People would thk I was crazy. It's great to know people r like me n they know what I am go n through n they know it's for real!!!

We Chiarians are NOT CRAZY!!!  
Avatar universal
I get hives from other peoples perfume, on my face and neck, itchy throat etc.
620923 tn?1452919248
COMMUNITY LEADER

  Hi and welcome to the Chiari forum

May I ask do u have Chiari or a related issue?...like Ehlers-Danlos?

  Most of us in this forum have these reactions as a result of our condition.

  "selma"
Avatar universal
This has been with me for months. Even if all windows are closed and no one at home smokes, I could strongly smell the cigarette smoke. I feel terrible as if the smoke is just around me. So, I decided to google "smell cigarette smoke" and found this thread. The more I avoid thinking about it, the more it bothers me. When I become so conscious about it, the smell somehow disappears. When I smell the cigarette smoke, my nasal passages tend to feel irritated, my head gets heavy to a point of a headache. When the smell stays longer, my breathing tends to be heavy. Clearly, even when windows are closed with no one smoking in the area, I smell it. I pray intently about it. It will disappear and comes back again. Whatever I do, where ever I am.  
620923 tn?1452919248
COMMUNITY LEADER

  Hi and welcome to the Chiari forum.

Do u have headaches?..dx'd with chiari?....

I used to smell it, but I know it was from outside or the neighbors....I think I may have been a bit hyper sensitive to it that it  bothered me, but I do not think I was smelling something that was not there.,

If u really feel u r smelling something  that is not there and u r not dx'd with a neuro issue like chiari I would suggest u go to ur PCP and ask for some testing to be done on the outside chance u do have a neuro issue.
Avatar universal
I hope this helps someone! I smelled cigarette smoke off and on for about 2-3 years. Had all MRI, EGG(spell?) tests run, basic blood work, loads of nasal sprays, creams and everything was clear. The neurologist, ENT no one could figure out why I was smelling. I even went to the ER one night because I couldn't stand it! The Dr. of course did a cat scan and blood work and couldn't come up with anything so sent me home with a rx combo of pain medicine and barbiturates!! I of course never filled the rx.
After the years of no one knowing, endless blog searching, unanswered emails to Dr.'s, even tried Dr. Oz, Fox news Dr. Manny Alverez etc. No answers. Well, ended up going to new OB GYN after several years of asking for a hormone test due to symptoms I was having, some days feeling like I was going crazy and thinking I might be going through Peri-menopause. I went to a new one because my current one obviously didn't believe in any hormone testing until you are IN or THOUGH with menopause. Being 43 I knew I was old enough to be going through something. My new Ob GYN (and BFF LoL) tested me and found I was almost depleted of estrogen and progesterone. Well after 6 months of HRT feeling like myself again I also realized I had not smelled any smoke!!! Maybe its a coincidence or not, but -knock on wood- after 2-3 years of phantom smoke, years of sleeping with toothpaste in my nostrils so I could sleep without smelling cigarette smoke, years of being so exhausted of smelling the smoke- bringing me to tears, my hormones are in balance and no smell of smoke!! So if you have not tried checking your hormones, insist of some blood work...what could it hurt?  I hope this helps at least one person out there because I feel your pain, exhaustion and aggravation.
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