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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?
COMMUNITY LEADER
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.
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.
COMMUNITY LEADER
Hi and welcome to the Chiari forum.
If others are smelling it, it may be something else and not really cigarette smoke....so have someone from a cleaning company come to check it out as I said it may not be what it smells like.
Do u have Chiari ?
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.
Selma Ur such a wealth of information! Thanks so much for sharing all you have learned!
COMMUNITY LEADER
Perfume's have always been an issue for me....and once in a while cigarette smoke....
Since Chiari affects the nerves it can affect how we experience different things...lights, smells, and tastes...and sounds.
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 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!!!
COMMUNITY LEADER
Hi and welcome to the Chiari forum.
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.
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 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.
COMMUNITY LEADER
Hi and welcome to the Chiari forum.
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.
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?
COMMUNITY LEADER
Well this is a forum for those with Chiari Malformation and the thread is dealing with those of us that have had these phantom smells due to the way Chiari affects us neurologically.
Actually I thought this was about smelling cigarette smoke when no ones smoking. First time hearing of Chiari DX?
COMMUNITY LEADER
Hi and welcome to the Chiari forum.
May I ask when u got ur Chiari DX and if u had surgery for it yet?
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!
Need a cure and soon!
COMMUNITY LEADER
Hi and welcome to the Chiari forum.
The member u addressed is not a active member of this forum and I am not sure has Chiari.....
Were u DX'd with Chiari?....IF so, what other symptoms do u have?
COMMUNITY LEADER
Hi and welcome to the Chiari forum.
May I ask does ur DD also have a Chiari DX? Those posting to this thread in this forum do have a DX of Chiari and not only can have the phantom smells but seizure activity as well...
Not sure what may cause her breath to smell like smoke unless she has an underlying condition not yet DX'd?
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.
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
COMMUNITY LEADER
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
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.
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.
COMMUNITY LEADER
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 : )
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
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