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?
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????
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.
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!!
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 !
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
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.
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!!!!
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.
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
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!!
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!
All those who also "smell the phantom cigarette"
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.
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.
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.
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.
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?
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.
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.
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.....
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...
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.
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.
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.
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!!!
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!
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.
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.
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
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 : )
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.
My daughter is a young adult with autism, global delays and a seizure disorder. The seizure disorder started first then brought on the other issues. We have found out that just the smell of smoke or the odor of some who has recently smoked will bring on a seizure by the next morning! this past weekend after recently having a seizure due to hormones ( she is a female) her breath smelled like she was smoking! We do not smoke at all and no one is allowed near our house with a cigarette due to her triggers. Can anyone tell me why her breath would smell like this when she hasn't been around any one? and no I do not have any of the things you all have listed as having
I have had this for a long time but its more of a burning/singe smell I was diagnosed with chiari in may but a lot of my symptoms had been happening like many for years before and some without particularly realising were anything to worry about. I've never mentioned this to my dr or ns as its not something that happens regularly but perhaps I should after seeing this and others posts.
Someone recommended Allegra to me. I most recently have been smelling the strong cigarette smoke. My doctor gave me Amoxicillin, it didn't work. Then a Z PAC still smelled cigarette smoke. Tried the Allegra and first day and smoke started to fade. Second dose smoke gone but third day was a couple hours late taking Allegra and smoke was back strong! Don't want to take Allegra forever! On another blog someone said it may be a stubborn fungus the thrives on moisture like in the sinus.
Need a cure and soon!
My 11 yo son just had chiari1 decompression surgery 6 days ago. He has always had a sensitive sense off smell but now that has been heightened even more and he is having phantom smells. He does not smell cigarettes but he smells a strong fake strawberry smell and sometimes a gas smell like what was used to put him under for the surgery. He also gets tastes in the back of his mouth with phantom smells. These smells disturb him very much and he is scared that this symptom will not go away during the healing process. Is this something that can fade as you heal or is it normally around permanently?
Post op it is not uncommon for many to experience some odd and even strange things as the nerves which were blocked b4 are now open and my be over sensitive for a while giving us an overloaded sensation to different or certain things like smell, taste or feeling odd sensations or numbness, tingling..etc....
There is no way for us to know if ur son has ne perm nerve damage ....and that is generally something his Dr would have told u if he had compression of the brain stem and was a possibility....most seem to have a syrinx that is large and again causing compression that develop perm damage....
Healing from this surgery can take up to 2 yrs as the nerves take longer to heal then the outside scar from the incision....so changes can be seen for a while to come....be patient and report all to his Drs at post op visits.
Where there's Smoke (Smells) there is fire...Is MTHFR your prob?
The phantom smells are a canary in a coal mine. That's all well and good if you know what it means when that canary buys the farm. Many people who ultimately develop MS report phantosmia (phantom smells, especially smoke) prior to diagnosis. However, a precursor to this condition is toxin overload, which not-coincidentally is thought to be related to MS development. When you have one or more MTHFR gene mutations, the body can’t produce glutathione efficiently to help the body detox on its own, so toxins build up and damage nerves. The good news is that there is more often than not a simple fix.
You might want to get tested for the MTHFR (methylene tetra-hydrofolate reductase) gene mutation. [If you google mthfr and mind map and mindmeister, there is a pretty good visual representation of this condition though it’s disease list is not comprehensive.] If you have one or more copies, it is easily correctable with the active form of folic acid called methyl-folate and the active form of cobalamin called methyl-cobalamin. Be sure to AVOID the inactive forms called simply folic acid and cobalamin or you will make your condition worse...even if it's just in processed foods. They can cause serious problems and even behavioral problems like irritability/anxiety, etc, and serious digestive issues when you eat too much of them and you have these mutations. (Warning!: You have to START SLOW and build up with this ‘fix’ or you will rebound causing more symptoms which may cause you to give up altogether on it. Just be patient and take it slow.)
There is a whole list of other associated conditions including stroke/heart attacks/Deep Vein Thrombosis, IBS, Crohn's & other digestive disorders, hormone dysregulation/miscarriages, MS, cancer, depression, anxiety, schizophrenia, bipolar, CFS, FM, migraines, multiple chemical sensitivity, etc. These conditions are completely avoidable with simple methylated B vitamins and a change in diet (avoid supplemented folic acid in food like the plague).
You can read about the mutation in a really well written blog post by googling "Holy MTHFR". The blog is not all about MTHFR mutations but the blogger takes a complicated condition and puts it into simple terms. Then you can read more convoluted, technical stuff online (mthfr.net and dramyyasko.com and heartfixer.com). There is also an mthfr support account on Facebook too, where doctors familiar with it will answer your questions. I see a doctor in Texas City, Texas, an MD who happens to be schooled in nutrition related disease. (most doctors are not, sadly. Dr. Ben Lynch has a Find a Doctor feature on his website though, if your doctor is not educated on this mutation and how to treat it: mthfr.net)
I've used Cerefolin NAC for a year now (methyl-folate, methyl-cobalamin and NAC combo) and the smoke smell only comes back if I stop using it for more than a couple of weeks. I am homozygous so it's a critical thing for me to take it life long. [I learned recently that the preservatives/additives in this form are a trial for my body so I am moving to Dr. Lynch's additive free methyl Bs.)
Oh and the migraines have stopped since I started taking 500 mg of magnesium citrate (has to be citrate or a chelated form of Mag) combined with 500 mg calcium citrate and a combo of vitamin D3/K2 5000 IUs/1100 mcgs before bed. Be sure to use the citrate form since the oxide form is not nearly as bioavailable...i.e. a waste of money. (**NOTE: This combo is important NOT only because they have to have each other to work properly but because taking calcium without mag and vit K can contribute to plaque development in your arteries. So if you lower the amt of Mag because your bowels loosen too much in this combo, be SURE to lower Calc to the same level to avoid plaque buildup. This is hyper-critical since those with these mutations already are MUCH more susceptible to heart attacks/strokes/DVT whether you are currently showing signs or not.)
In addition to the night Mag combo, I added 500 mg mag citrate alone to my morning routine which also seems to be helping reduce the number of migraines/headaches too. In any event, there seems to be some kind of connection with an increased demand for Mag for those of us with this mutation. [A couple of times I have used about 8 oz of pomegranate juice too, a vasodilator, when the magnesium combo just wasn’t enough and had headaches ease off altogether.]
**You can buy these active B vitamins without a prescription at Vitamin Shoppe for about the same as what you spend for a 3 month mail order supply through an online pharmacy like Brand Direct for one of the 'medical foods' that combine them into one pill, but you need a prescription for them. (i.e. Deplin, Metanx, Cerefolin NAC---each of these varies in type and amt of active B vitamins and are listed here in increasing amts of methyl-folate/methyl-cobalamin formulations) You may have to try one and move to another if it isn't enough to address your condition. Just google the contents of each to see the amount of each methylated vitamin in them if you are going to try to match them at Vitamin Shoppe separately. (again, if you are homozygous, consider using forms that have NO additives like Dr. Lynch's or Yasko's)
Heterzygous---or a person with 1 gene mutation copy--- needs less methylated B vitamins usually than those who are homozygous---or have 2 gene mutation copies. You don't have to be tested to try them but doing so will make it much easier to treat and to know exactly how much you need so you don't waste money.
1 mutation means you are about 70% efficient at activating your Bs while 2 mutations means your about 10% or less efficient. That is a serious difference and means you are MUCH more susceptible at an earlier age to the disease states associated with this mutation if you are homozygous. However, they are beginning to understand that heterozygous mutations have their own significant challenges so don’t discount your need for methylated Bs if heterozygous.
Just a thought...the longer you wait, the more likely you are to develop the related and completely avoidable diseases with simple active (methylated) vitamins. Be proactive...don't wait until you come down with one of these serious diseases because treating it at that point is much harder.
The member u r addressing ur reply to is an inactive member, u can send a PM (private message) which will generate a e-mail so she is aware someone is trying to make contact.
May I ask, do u have Chiari?
I understand there can be many reasons for phantom smells, but when u have a neurological condition it is more likely related to that said condition with even additional issues with vitamin and mineral absorbing issues due to how the neuro issues affect us over all.
Wow I thought it was maybe because I used to smoke. Maybe it is, but I stopped over 4 years ago and am not around anyone who smokes... Because I saw this thread I am going to talk to my Neuro as well. I get this on and off and usually before a really horrible migraine. My kids always say that I smell things they don't not just smoke... Perfumes do not bug me so much unless they r really strong.
I have always thought it was just me cause I have always had a heightened sense of smell. Never though the Chiari would be the culprit.... I saw the seizure post as well man I learn something new every time Im on here! This is all stuff I thought was just normal for me.... especially the light flashes or zoning out ( that's what I call it.. I hear everything going on around me but I cant respond or comprehend any of it) Strange...
They seriously need a list of common problems cause half the stuff that happens with me I wouldn't tell a Dr. because I have had that stuff going on for so long and I never thought anything of it but that it is super annoying. Thanks for this thread!!!
I dont know if my problem is any different to others, I have started smelling really strong cigarette smoke in 1 corner of my bed room, it starts around 1.30 or 2 am and lasts till around 4.30 am, its getting unbearable, I just dont know what to do. Or who to turn to. I cant smell it anywhere else in the house just in 1 corner of the bedroom. I went away on a weekend break but I never smelt the cigarette smell in the hotel room, and not even the night i returned back home. But the day after it started again. Even my partner smelt it twice, he could even smell it on my body but not in my hair, I i could smell it on his body too. Even now I can smell it, but the moment i go out of the room the smell goes away, I am so frustrated and feeling so helpless. I dont smoke, never have and neither does my partner or anyone around our house. I used to smell it occasionally in my other house too but it would only last about 15 mins and other people in the room would smell it too, but again no one would be smoking. I would like to believe its a neurological condition and get treated. But if it was that then how is it possible for others to smell the cigarette smoke too?? Please can someone help or guide me.
Certain perfumes and colognes cause severe headaches for me too.. I was thinking it was a sinus issue at first, but honestly, where the pain starts, is no where near any sinus cavities. On my last MRI date, I had a horrible headache with ear pain, and I seriously thought it would show that I had an ear infection or mastoiditis which I've been diagnose with several times, but the result clearly said that all of my sinus cavities as well as the ear and mastoid process were completely clear. At this point, I have so many symptoms that can be contributed to my CM. I've been told in the past that it was "all in my head". Although those doctors didn't find the problem, I suppose they were right. It is all in my head, just not in the way they thought.
I too have had issues with perfumes....not only did they give me HA's but also some made me feel sick to my stomach....
Wishing I could understand the reason sooooooooooo many Drs want to say it is all in our head referring to we do not have a thing wrong to really considering it is in our head and it is something that needs attention....ugh.
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