Does anyone have an update on this? I have currently been back and forth with the NHS for 2 years now. To be fair to them they have tried so many things - Steroids, Anti-Biotics - Anti-Seizure tablets, MRI , CT scan , all sorts of tests.
I have finally been referred to the top Smell and Taste clinic in the UK and I am very grateful for this as I can not afford 4000 dollars when they don't guarantee a cure. If anyone has been to Washington DC and had success please let us know.
I would like to add that when I get a bad cold all my symptoms disappear during the cold - is this linked ? does the cold interact with the nose and cure it and is there maybe a way we can replicate this effect?
Wanted to add also that when he uses the Neilmed sinus bottle, he bends over with his head upside down to kind of drain it out, too. He's had times where it takes a few rinses to get rid of it. He just keeps doing it until 'the smell' is gone. He's had water not fully drain out though, only to come dripping out of his nose when he least expects it, so he has to have tissues ready. Honestly, it still sucks, but it gets rid of the smell when it happens. It's something that still really impacts his life, and our whole family's. He never ended up calling the sinus clinic in DC that's talked about in this post, because there's no way he'd get the time off from work, and we couldn't possibly pay $4,000 for it.
Hello Dave (and everyone) :)
It's been years since I originally responded. I ended up randomly finding this message board again and felt like I should chime in. My husband is still experiencing the same symptoms I originally wrote about, where the bad smell can be brought on by anything that causes him to breathe through his nose (laughing, sneezing, etc..), and also strong cooking smells can bring it on, too. However, over the last few years he has found a way to get rid of it when it does happen. He uses the NeilMed Sinus Rinse bottle and saline packets. You can buy the kit that comes with both the bottle and the packets at most stores (target, walmart, rite aid, etc) for about $10. It's still really annoying for him to deal with, and frustrating to not have a medical diagnosis or cure, but at least he's found something to make the horrible smell/taste go away. I just thought I'd share in case it would help anyone else. Living with this thing is truly horrible, especially since no one seems to know what it is and when the condition comes on, it really is crushing--emotionally hard to deal with. I'm so sorry for anyone dealing with it.
Has anyone found a permanent cure? I’ve been using nasal rinses but that just temporarily relieves it... It’s getting so bad. I’m getting it at least 3-5 per week now.
This unexplained smell is most likely some sort of olfactory hallucination. Possibly caused by hormones (happened to me while pregnant) or a neurological issue.....may having to do with the adrenal glands?
If you look at holes in tonsils there is yellow gunk. That is ways come out and getting crushed in your mouth. Giving you the bad smell
Same problem. I had undergone nasal surgeries thrice, SMR but still living with same condition now at 40. My problem aggravate during winter season. Finally quit seeking medical intervention after a renowned ENT specialist in my City referred me to a psychiatrist insulting me in front of my friend. This chronic problem slowly transformed me into a introvert.
Has anybody found any cure yet? I am struggling with the foul odor in my sinuses and constantly worried if people around me can smell it. I am 40 yrs old and had this for about 3 years now. I am scared to ask people if they could smell anything. I am also not in a financial position to pay for expensive medical care. It's soul crushing and with times just want to not live anymore. I am becoming a recluse. It's killing me.
The smell is caused by bacteria. There are lots of places for bacteria to hide like the sinuses and Eustachian tube. If your lucky to find the right doctor and antibiotic the bacteria and smell will go away at the same time. And I know it's difficult but keep your fingers and sleeves away from your nostrils. That's probably how the bacteria got there in the first place.
If ever there is an answer, I'd love to know :( I too have been to ENT's, pricing CT scans, nasal swabs (testing for molds) antibiotics.... The "funk" is what I call it. Present with sneezing, blowing nose, laughing loud... Nobody else smells it. I've had it for 8 months, it's making me crazy!
I have had this condition for a year now. Started out of the blue and had gotten so much more frequent. I was afraid to tell anyone because I thought they would think I'm crazy. My family can't smell the awful "burning moldy" smell that I get from laughing, sneezing, blowing my nose, etc. On occasion smells trigger it, like cooking smells. I am 21 years old and freaking out after reading this entire blog since 2008. I've been to my family doctor 4 times, two neurologists, and I am currently seeing another neurologist at Jefferson Hospital in Philadelphia. I've gotten MRI's, EEG's, and you name it. I am on migraine and seizure medicine because after the "episodes", as I call them, got worse, I started getting awful migraines. The medicine isn't helping the episodes and my neurologist is still doing testing. Naps and sleep seem to be the only thing to get the smell to go away but after reading everyone's post I guess that won't last long. My next step is Washington DC but I don't even know what to expect. It's a bittersweet moment not to be the only one, at least we're not all crazy right? Hoping for a miracle for everyone!
Hi there: I have read through the comments and must makes some comments myself. Rsur910: As a graduate from med school, you need to learn to think about what you have read. Most people have had diagnostics done, with no polyps etc. detected. I’m pretty sure drinking more water is not the answer. Personally, I have suffered from this condition for over 25 years. It first happened when I was in my mid twenties, and like Dave L, it seemed to become more frequent as I aged. I used to be able to have a nap and it would go away. Now, it usually goes away after I go to bed and wake up, but sometimes it doesn’t. Like many of you, I asked people see if they could smell something on my breath or when I breathed out my nose, but nothing was ever detected. About six years ago, it went away for about half a year, but I’m not sure why. For me, it’s changed my life and I’m pretty sure not for the better. I avoid many things in life that I know I would not otherwise. Apart from not enjoying food, I avoid contact with people as my ‘triggers’ seem to be anything that gets me excited like laughing. But I could be sitting reading a book and it will occur. Generally, I am not a happy person and I feel fairly helpless because my friends and family don’t understand. Also, smell is so a part of our lives. Someone might say, ‘Oh doesn’t that smell wonderful!” And I can’t be bothered anymore saying that ‘No, it smells horrible!”. Partly b/c I don’t want to destroy their moment of pleasure. For me, I think it is some sort of sulfur smell that gets mixed with all the smells of the day. A bad day for me is if I can’t even drink my cup of coffee in the morning. If the condition is there, it makes coffee disgusting. And if it hits me in the morning, as it usually does now, I have to endure the rest of the day…. And hope tomorrow is better.
you guys most likely have a polyp and on top of that you don't drink enough water. I just finished Medical School and i myself have a nasal polyp. its very hard to see but all the mucus just is lodged behind it.. and imagine how gross it is. honestly polyps in the nose do not have any correlation with cancer and if you get them removed most likely it will grow back. if its a really bad polyp ruining your breathing or causing you this taste i say do it . i think insurance covers it. I had severe congestion and trouble breathing my whole life. everyone i know always tells me how i breathe so loudly.. it took me forever to figure out that it was because i pretty much breathe thru only 1 nostril with ease
I am a 50 year old woman who has just had the onset of this horrible smell. After reading most of these posts, I discovered it is coming from my left nostril. It just came on 2 nights ago for no reason that I can tell.
I became visually impaired (blind in left eye and low vision in right eye) about 11 years ago. I am a type 1 diabetic, have glaucoma, hypothyroidism and nasal allergies. When I became visually impaired, I noticed that as time went on I became more sensitive to smell and sound. My husband is a smoker - outside only - and sometimes I can barely stand the smell that follows him in when he comes back in the house. He has to wash his hands thoroughly after each cigarette or I just about barf. I, too, get fixated on the overpowering smells as they come up.
This smell that is occurring now is sort of a poop - fishy - yeasty smell. It is horrible! And as the day has gone on today, it has only gotten worse.
I was thinking about my father who had what sounds like the same problem. When I was a teenager, back in the early 1980's, he would ask if my mother and I could smell something rotten or nasty. We didn't smell anything. Eventually he went to the doctor and was told he had a sinus infection. Eventually he began to have this really terrible sort of dry cough that would start just out of the blue. After suffering with this for many years, and the sinus infections coming and going, he was tested and was told that he was having mini strokes and that is what was causing the trigger for the coughing. But after more testing he was told that they couldn't quite figure out if the cough triggered the mini seizures or vice versa.
I have never smoked, drank alcohol or done drugs. I do take eye drops for glaucoma, and recently have been put on 2 news one, though they all do basically the same job in your eyes. I do suffer from gastric reflux and take medication for that, but I have been on those meds for years now.
I live in a dry, windy, dusty climate and was diagnosed with Valley Fever and pneumonia back in 2010. I was thinking this might all be a bout of either of those things cropping up again - but after reading all of your posts, I am now wondering if it might be something else.
I have started using colloidal silver nasal spray - a natural antibiotic - and will see if this helps before I go to my doctor. I don't do well on antibiotics due to them causing yeast infections (common for type 1 diabetic women), and also that runs in the family. All I know is that this smell is horrible and makes me a little nauseous right after I blow my nose. Funny thing though, I have not sneezed at all today and I am actually blowing my nose less than usual. I keep boxes of Puffs in every room of my home - literally - due to the smount of nose blowing I usually do. So far, this smell has not affected my sense of taste and I have tasted all of my food normally for the last 2 days. I will update if anything new comes up. Hope all of you are doing well and have found some answers!
I missed to tell that the car boot door fell on my forehead.
Incidentally, this is the first day I felt a foul smell in my nose. I could only relate it to a small accident happened two days back. The car boot door fell down due to heavy find, while I was loading luggage. I had a very small cut, without bleeding. For 30 mins, I had a slight trauma. After an hour I took TT. Today I felt the bad odor in my nose for 3 to 4 times. One of my colleague said that it could be that one of my sinus areas got disturbed and that could be reason. Anyways he has suggested to me to take Homeo Arnica and I should be fine.
I should also add that over the last couple of years my Smell has also triggered headaches on a few occasions. Do not know if this is psychological or not.
Hi,
It's been 7 years since your first post. I pray to God that you have found some relief from your symptoms and for what I have come to call "The Smell".
I, sadly, have not. I know that doctors in the US at least try to diagnose this problem and you do have a lot of skilled ENT specialists in your country. I know that we over here in Europe we do not, there is simply not enough research or knowledge about this condition. I know at least one over there who has this phenomena (phantosmia / neural smell disorders) as a research project. Cannot remember his name right now, this doctor has his own clinic in the US. When you think of it it as a quite serious medical condition, or disability actually.
Kind of ironic that when you first posted this was around the time it started for me. Thought I was the only one for a long time and that also drove me crazy.
Remember it quite vividly how it all started in my kitchen on a sunny day. it's like my life took a turn on this day: it is before or after "The Smell". In the beginning I thought it was a "taste" (called it The Taste for a while) and one of the first things I did was actually to completely rinse my nostrils and sinuses with saline solution. To this day, this is actually the best temporary relief. nothing else helps.
My family doctor and then the first ENT I met all recommended me basically the same treatment: anti-biotics and different nasal sprays. Standard diagnosis has always been sinus infection (sinutisis). They seem to ignore the fact that I have had sinuitisis over the years as well from time to time and I know very well that my symptoms exist regardless of any sinus infections. They are not related. I know how a sinus infection feels and this is not it. A sinus smell is also VERY different and other people can often actually smell it too (bacteria)
Nothing has helped so far. I've done a endoscopy of my stomach (as they thought it was a Taste first) and been examined by a rhinoscope in the nostrils. I have taken pills against acid indigestion, even though I told the doctors that I did not have any symptoms or pain from the stomach at all! and last but not least when I was about to give up I demanded an MRI scan of my brain as I knew very well that a tumour could not be ruled out at that stage. Over the years I have always had the feeling that no one took the symptoms seriously.
Anyway the MRI scan did not show anything either, this was in 2011. Guess I have actually come to accept my condition. Which is sad in a way. I know that the last resort i surgery and complete or partial removal of the olfactory bulb = loss of smell. It has always been my firm belief that this is neurological disorder and not related to the nose and / or sinuses!
I also believe this smell is completely neurological (a smell distortion or hallucination) because it is A. very hard to describe and B. when other people try to describe similar symptoms it just seems to be anything that has a foul smell. SO doctors and other people try and "pin point" a smell that does not in fact exist as in mucus/bacteria etc, and so they focus on the wrong thing!. It is just a perception of a smell.
I would say that it is like a mixture of gasoline/something burnt, chemical and and a bit metallic.
Hello,everyone. Sorry,if my English is a little incomprehensible,I am not a native speaker. I experience something similar,too.I should have went to the doctor a long time ago,because that thing made me self-conscious around people in high school.I am 19 at the moment,and I have had that foul smell in my nose after swallowing for 4 years for sure.And I am almost 100 %sure that people can smell it.I didn't pay much attention to this strange smell,because I thought other people can have it too after swallowing, but recently I have become pretty nervous around people,when in the bus,e.g and other crowded places,knowing that emitting bad smell from your nose after swallowing is not normal,right?? Even if I have just washed my teeth and chew gum I have that bad smell back in my nose, coming either from the throat or the back of my nose(not sure),where I have phlegms.That bad-smell thing is pretty depressing,knowing it's not common,and that it's hard to discuss it even with your closest people.What's worse,I have started to observe people's reactions and each time someone rubs their nose or looks in my direction I feel as if that smell really is noticeable,and that they may think I have gas.I may be exaggerating, it may be just my insecurities,don't know.However, I am going to the doctor as soon as I finish my exams!I hope I am not crazy! Another thing,2 years ago for over 6 months I felt as if there was something literally blocking my nose from the inside,not allowing me to breath normally.However,I didn't have runny nose ,just that blockage and the snoring.Again,I didn't see a doctor.... A male nurse from another forum told me it is possible that I have a chronic infection on either sides of my sinuses.Hope I find out soon, and wish all of you to find a way to solve your problem!
Struggling with this for a couple of months. Read most of your posts and relate to many, but didn't see if anyone is smelling what seems to be cigarette smoke. I feel like I smell it and almost taste all day long. I'm NEVER around smokers so it doesn't make sense. When I'm smelling it, I can hardly concentrate on anything else. It is so strong!
My boyfriend has this same problem. I was wondering what your outcome was since it was so long ago??
Hey everyone I get this same smell. The smell is so intense I almost vomit. The problem is mine only lasts for a min or two then goes away. It comes and goes without any triggers boom there it is . Mine also is in only in the left nostril. No one else can smell it it comes in different smells like bad breath smell, dog farts you name it I get it. At first my dentist said it was from an abscess tooth near my sinus canal had it pulled was on antibiotics for a while no smell then wham ! Hope this helps glad to know I'm not the only one. Oh yeah my nose doesn't really smell things like flowers or even nasty smells that are present in a room only the ones in my head.
i have had this for a couple of years and so pleased i'm not alone. the smell is something akin to rotten flesh but no one else can smell it. when i tell people they react with either disbelief or disgust. my doctor doesn't seem to take it seriously either. how many of you are in the u.k? is there any one here i can go to?
Dave,
Do you have any updates on this "condition"? I've had it for almost two years now it's driving me insane! It has gradually gotten worse each week. I get it almost every single day now and it lasts from a few minutes to ALL DAY. My "condition" is triggered by sneezing, laughing, inhaling too quickly (gasping), sniffing (especially when I have a runny nose), and blowing my nose. Most of the time, it's from sniffing when my nose starts to run.
I am extremely embarrassed when my nose starts to run because I cannot blow my nose or sniff like "normal" people can. I have to use a tissue and dab the inside of my nostrils. Can you imagine doing that in public all the time? I'm sure it makes people feel uncomfortable and disgusted!
My "condition" also gives me a bad taste in the back of my mouth. I can still taste food, but the taste is slightly altered. I've lost my appetite for food because hot (in temperature) foods always give me a runny nose, which leads to the whole "condition" being triggered again.
I've been doing saline rinses, but it only temporarily helps with the "condition". Like another poster said, I can't carry the Neti Pot around with me everywhere!.. And at the rate I'm getting the "condition" each day, I'll have to do the rinse every couple of hours..
If anyone has found a way to "cure" this, please please please let us know!