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?

[selmaS]

  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"

[missing_me]

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.

[selmaS]

http://www.medhelp.org/posts/Chiari-Malformation/Various-Questions-Epilepsy-and-Chiari/show/1006312

[actressmouse]

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!!

[Samanthab259]

I often smell & taste them. I never noticed it before I had surgery only afterwards.

[Debi813]

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 !

[actressmouse]

Does yours come and go?  Mine does....I am hoping that my sleep study/EEG sheds some light on this.  Thanks for the validation!!!

[mclark822]

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

[Debi813]

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.

[actressmouse]

I know what you're talking about....I can't go into craft stores because of the overwhelming smells from various sources!

[selmaS]

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?

[Debi813]

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.

[PandoraPenncraft]

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!!!!

[actressmouse]

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.

[sleepypea]

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

[2009Zipperhead2009]

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.  

[trippmusic]

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!!

[jiggle93]

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!

[2009Zipperhead2009]

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!!!  

[raegold_]

I get hives from other peoples perfume, on my face and neck, itchy throat etc.

[selmaS]

  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"

[LaAmari]

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.  

[selmaS]

  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.

[4brookers]

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.

[selmaS]

  Hi and welcome to the Chiari forum.

May I ask if u also have the dx of chiari like the others on this thread? I am sure this worked great for u if u did not also have chiari as ur medical issue.....and I am so glad it did help u. I also hope that those with chiari can look to see if this may help with this issue, I know with the compression our pituitary gland can be affected and it could be hormonal in nature as a result, but post op it can also resolve, so HRT may be too far to go, since some r not  at that stage.

But thanks for sharing what worked for u : )

[Charley48]

I am a 48 year old male.  I do not smoke, nobody in our house smokes and I am too, having this cigarette type smoke smell everyday.  This started when I was taking Amoryn, a natural  antidepressant.  I quit and evn after 4 days, I still smell the haze of smoke.  I don't know what to think, It is bothersome to say the least.  Could this be a hormone imbalance, or something else?

[selmaS]

  Hi and welcome to the Chiari forum.

May I ask, do u have Chiari Malformation or Syringomyelia?

It seems that some with a compressed brain stem be it from a condition like this or a trauma induced injury, it may cause this phantom smoke smell....I saw this on a few other forums concerning head injuries and neuro issues, not just chiari and y I am asking if u have Chiari.

[debbie0605]

      
   I wake up in the middle of the night and I can smell smoke. This has been
   going on for years and in several different homes that we have lived in.
   I wake up and check the house out and even the basement. I use to feel
   the walls; thinking it might be in the wiring behind the walls. Of couse I
   never find smoke. I never knew that their was what they call a phantom
    smell until tonight we I decided to google my problem. I still don't
    understand why it happens. Maybe I never will.

[selmaS]

  Hi and welcome to the Chiari forum.

I was wondering do u also have Chiari like the others here on this thread? It is hard to figure it out when u do not have a dx let alone if u do, we r not sure if phantom smells is a symptom of Chiari or a related condition.....

[CocoChanell2]

I'm so glad to read that I am not alone when it comes to smelling smoke when there is none.  I feel/felt. a bit crazy because nobody else can smell smoke but me.  I really need a solutions to this problem but I'm afraid I won't find a doctor who is familiar with this symptom/issue.  Thanks for sharing your stories...

[selmaS]

  Hi and welcome to the Chiari forum.

  Do u also have Chiari like the members of this forum? With Chiari it affects all aspects of the neuro  system so this could be a reason  so many here have had this issue of phantom smoke  odors. U may have an undx'd neuro issue as well....and may be where to start.

[SharonKZ]

Thank God!  I'm not crazy after all!  I live in a house of males - I always smell aromas before they do.  Sometimes they never smell them.  Approximately 2 weeks ago i started smelling what I thought was cigarette smoke.  None of us smokes.  Of course no one else smelled anything. : (  At first I thought it was the new neighbors (whose back door is near our heat pump) outside smoking.  Nope.  Then I thought maybe it was the neighbors on the other side.  Nope.  And i only smell it in one room of the house.  Weird.  Finally, a couple of days ago my husband said he was smelling it, too.  Whew.  He even checked our crawl space (accessible from outside) thinking a homeless person was living there.  Nope.  We've checked everything and have found nothing.  I'm going to assume it's nothing physical since 2 of us are smelling it.  On another site someone mentioned a leak in freon.  Maybe we'll have that checked.  I'm flummoxed.  Thanks for listening.

[selmaS]

  Hi and welcome to the Chiari forum.

Do u have Chiari or another neuro condition that may be playing a role in these phantom smells?

That is what we r referring to here....and it is possible u do not have Chiari and it is something else....but do see a Dr to find out if it is a medical reason.

[becky4171]

I so hope maybe you guys can halp.I have been reading your threads and I can say wow that is me but I have Syringomyelia.My syrinx is in my tharacic spine I have been having weird feeelings pains and smells for over year now. I also told my doc and nothing came of it however I do not smell smoke I smell pizza with everything being cooked and tar  sometimes...lol...Putting this on here so maybe it can help somebody know they are not alone.

[selmaS]

  Syringomyelia is a neuro issue and could very likely be the reason for the phantom smells u notice.....

There r far too many Drs that do not know how we r affected by these conditions...meaning Chiari and Syringomyelia.

[Ana707167]

Thank you so much for sharing your story. I have been smelling cigarette smoke for about 3-4 weeks and also wondered if it was only me. I will ask my doctor to do some blood work and hope for the best. Thank you so much, I appreciate it!!!

[wnzday]

I would much rather smell ciggerette smoke than what I do, lol. I smell urine! Yes, of all things... As if the normal nausea isn't enough. It's so gross, But that's what I smell. I always know when I am going to be going into another bad flar up because for 2-3 prior I smell Urine, UGH!

[WarmweatherGirl]

I also have phantom smells and an increase in real smells. The phantom smells r usually chemicals or gasoline-like. Ppl ask me if I'm pregnant b/c certain smells r so strong I get nauseated. The worst one is being able 2 smell someone's dirty hair from a mile away! Other ppl's body smells gross me out the most. Good 2 know I'm not alone.

[selmaS]

I too am more sensitive to people and the aroma  they trail behind....sometimes it is their perfume, it can also be their deodorant, fabric softeners with a scent...u name it it can gag me....

@wnzday....I do not imagine I could handle that smell  either...yuck....

At least u have a warning system...lol...

[Sabbynal]

I smell swimming pool. Sometimes it's worse than others. It's a chemical smell that reminds me of being pushed into a swimming pool when I was a kid, or going too far down into the deep end. Only happened after surgery. It has really let up in the past few months. Hope I'm getting rid of it.

Funny, though, I have hyper-sensitive hearing. I can hear upstairs around the corner and behind the door. My kids hate it. Sometimes I pretend to be a superhero with that one.
Cheers,
Abby

[vrvs]

What makes the smell of something, like cat urine or smoking odors? The smell is made of invisible gases that have vaporized from the source. These vaporized odors float in the air attaching to the suspended cation particles which act like a sponge absorbing and carrying the odors and toxins through the air we breathe. There, is a permanent solution for odor problems and poor indoor air quality repaint, the walls and add the paint additive, AirReNu

[selmaS]

  Hi and welcome to the Chiari forum.

What u suggest is great, and I am sure helpful to those that have a cat or someone that smokes..... or moved into a home where the previous  owner may have,,,,BUT this thread referrs to those with a neuro issue that makes u feel like u smell something that no one else can...it is not really there to remove with paint or cleaners...

What u propose is great for those in need of freshening up the air and the suggestion is appreciated : )

[wombat29]

My experience of this smoke smelling thing is that it is related to dehydration.  So now, as soon as the weird smoke smell starts, I know to drink an extra glass of water and increase eating crunchy raw vegetables - like salad, cucumber, peppers, or fruits. It also helps over time if I am getting enough electrolytes, vitamins and minerals.  It's as though my body just wasn't in a state that would allow it to stay hydrated.  
   I'm finding that caffeine (coffee, tea, chocolate) DE-hydrates, so drinking these for thirst will have the opposite effect.  I don't know if the smell is a lingering toxin that didn't get a chance to clear (due to the lack of fluid) or whether it is like a change in the nerve receptors.  In any event, getting more hydrated is what has stopped the smoke smell.

[selmaS]

  Hi and welcome to the Chiari forum.

Do u have a DX of Chiari? I am wondering if this is an issue as well as ur hydration issue?

  I appreciate ur sharing what u found to help, as I am sure it may help others here as well <3