I was trying to do some research on the internet and came across your post. My husband has the SAME THING! He has been trying to figure out what the problem is for years. He's visited a few doctors, and no one seemed to be able to help.
He actually won't let himself sneeze, bend over, or do other things that will 'trigger' this horrible smell/taste. Sometimes when he sleeps he can get rid of it, but not always...
It really interferes with his daily life....like, he won't want to plan a birthday dinner because he's afraid he'll have his 'thing' (as we call it) and he won't be able to eat.
Seriously, though...we've been trying to figure this out for years, and no 'chemosensory disorder' seems to fit the symptoms.. I think one of the biggest things is the fact that the symptoms are not always present, that they have to be set off---as in sneezing, or something like that.
My husband is 27...I'm not sure how old you are, or if age even has anything to do with it...
If you've come across any new information since your post...please let us know!
I'm 49 and I first experienced this when I was around 30 years old. I know exactly what your husband means when he says that he doesn't enjoy eating out when it it happening. You call it the "thing" and I call it the "condition". My doctor has no idea what it is and I've searched the internet for years and have never really found any information. My wife thinks that it could be polyps but we've never had that confirmed. You mentioned birthday dinners which is funny becasue my son't birthday is May 7th and we are celebrating it today (Saturday). I am praying that I don't get it today. I used to be able to take a nap and it would go away... that doesn't work anymore. How often does it happen to your husband. For me, it seems to come in spurts... I'll get it for a few times every few days and then I won't get it for weeks. I used to think that it was from a cold coming on, but it is not related to colds. If you guys find anything on the internet, please let me know. Tell your husband not to let it get him down although it is hard to make folks understand how much it affects everything, most notably eating and enjoying your food.
Alright well, I think I know what’s troubling you and I know where you can find a cure. I suffered from the same symptoms for five years before I found someone who could help me.
You have what my doctor calls cyclic smell distortions. People with this condition smell unpleasant odors that seem to switch on and switch off throughout the day. These bad odors might smell rotten or burned and they tend to occur only in one nostril. In my case, the unpleasant smells started when I sniffed, blew my nose, sneezed or laughed. However they can also manifest for no obvious reason. This disorder progresses over time, but you will probably NOT notice that unpleasant odor directly after you wake up (at least at first).
When these smells first appeared, I got temporary relief by pinching on my nose and holding my breath. A salt water rinse also helped to suppress my symptoms. Eventually though, all my coping strategies stopped working.
Cyclic smell distortions do not happen in your nose. You actually have a sensory seizure disorder, which is caused by a slight chemical imbalance in your brain. Unlike motor seizures, sensory seizures are partial seizures and they don’t manifest in a loss of motor control. Instead they affect how people perceive sounds or images, or in your case, smells. Your seizures are activated when you stimulate the nerves in your nose by laughing or talking.
If this condition goes untreated it will often get worse and worse, until the smell is unremitting. so it’s really serious. It is also extremely rare and there’s only one doctor I’m certain will recognize it since he was the one who identified it. He’s found a means to control this disorder. You can take medication for this and get it completely under control. You’ll get rid of that smell completely. But because you have something so rare, you really have to contact him. He’s a specialist named Doctor Henkin and he’s the head of The Taste and Smell Clinic in Washington DC.
I strongly urge you go to this website:
and call the clinic. It might cost you a plane trip but because this is so rare, the clinic covered a lot of my expenses so they could study this disorder.
Here’s an article from the taste and smell clinic about your condition:
I hope this helps. I remember searching on the web just like you. I found NOTHING. It really got me down. But during those searches I also ran into a lot of people who had the same symptoms and they didn’t know what to do either. So now that I DO know, I’m trying to post stuff around the web so other people might read this and get some help. Anyway.. Please email me if you have any questions good luck
i have the same thing happen,what you are suffering about that bad smell..it started for me,when i was 16 yrs. old,until now,i am 30..but i have an anti bacterial medicine to get rid of this bad smell temporarily..i take it 3 times a day..
I had it years ago,and it drove me crazy! I went to an ENT specialist and he said it was a sinus blockage all the nasal sprays and meds didnt work,and it eventually went away on it own,but every now and then it comes back,so i get a bowl of boiling water and,put a towel over my head and inhale for a couple of minutes,it may help.If all fails go see a doc.:)
I know it's been quite awhile...but I haven't checked this in a long time, and was surprised when I did.
Honestly, we're quite excited about all your information, katkatkatkat4! My husband is going to call a specialist in the morning and ask about the MRS test preformed for seizures....if they don't seem responsive to that, he's going to contact the Taste and Smell clinic.
I do have a question, though.....For my husband, the 'condition' isn't just trigged by blowing his nose, sneezing, laughing ...It's also triggered by certain smells. Cooking smells, for example. I have to be very careful not to burn anything, or even sear something on a higher heat...the smell is almost certain to bring on the 'condition'. Have any of you found this to be the case, also?
Thanks for all the information!
Actually, I've never had the condition brought on by a smell. I can't figure out why I can go months without it happening, and then it could happen several times in a week. I've tried to tie it to weather, or something in the environment, but I've never been able to do that. I don't want to jinx myself but I'm in one of those periods when it hasn't happened in a while. I'll let you know if I could figure out anything else. I'm not sold on the siezure theory, but I guess anything is possible.
I was so excited to find this post. I have had this for what seems like forever, probably only 18 years or so, but with as bad as it has gotten it seems like forever. The doctor that I had seen for it said it was because of extreme sinusitis due to a drainage duct being deformed, they went in and cleared it all out and fixed the duct and I had no problems for 6 months. Then wham, it came back, he said it was due to getting a cold and not getting antibiotics for it. I used to be able to lay down on my right side, then that didn't work, then take a short cat nap, then a longer nap and then sleeping overnight. Now of course even that isn't a guarantee that it will go away. I am dealing with it as best as I can but would love to find a way to get rid of it. I am just very glad to know that I am not crazy and this is a real thing. I am going to check into the taste and smell clinic!! Thank you all for posting all this info!! Would love an update on whether anyone has had any luck fixing this condition!!
Just wanted to say that I started having similar symptoms like the ones described by the posters about a week ago. Mine started after I sneezed, went away after I slept and came back again after I sneezed again. Now it seems to be here and started again this morning after I woke up but it was not started by a sneeze. My smell is hard to describe but it is a moldy kind of smell. If it continues and doesn't stop I will need to see a ENT because it can become tough to deal with. Also thanks to katkatkak4 post and the info about Doctor Henkin and The Taste and Smell Clinic in Washington DC.
Your problem is remarkably common on this forum. All I can tell you is some of the things I've noted here, with no guarantees.
1. Some people, including myself, have had a smell that only they can smell. It could smell like dog-poop, old cheese, ammonia, a burning smell, etc. The smell comes on, often, as a result of a cold or sinus infection. Some, not all, of these smells are caused by an anaerobic bacteria thriving in the upper sinuses, and I was able to remove mine with a Flip-Turn Sinus Flush, and many other people have had success with it as well:
The Flip-Turn Sinus Flush is mildly risky, because you have to bend over to do it, preferably in a shower, but you can also do it outside on soft ground, or you can kneel down and lean over a bathtub, or perhaps a plastic basin or tub, with the shower running for steam.
2. Some people had the smell, but were able to get rid of it with long-term antibiotics.
3. Some people had cysts or polyps, which blocked off parts of their sinuses, and created a pocket of infection. One woman, after reading my journal, made an appointment with Dr. Murray Grossan, who invented the Grossan Irrigation Machine, and he removed her cyst and the smell went away.
4. One man did a sinus flush, and some white tofu-like chunks came out. The smell actually got worse for a while, then went back to normal.
5. Many people, particularly the ones who have a strong odor that other people are revolted by, had no change at all after doing a Sinus Flush.
6. One woman found out that the smell was coming from a cracked tooth that her dentist was unable to find, but was discovered by a different dentist.
7. Some smells can come from liver or kidney diseases, (I think it's called ketosis), or from acid reflux in the stomach, or from a brain injury
8. Some smells can come from having a bad mix of bacteria in the intestines, and somehow the smell comes out through the sinuses or lungs. The best solution that I have seen is The Schwarzbein Principle by Dr. Diana Schwarzbein, MD.
9. There is a disease called atrophic rhinitis, which involves the decay of the mucus membranes in the sinuses. I don’t know much about it, that’s what ENTs and Google are for.
10. There are people who have been to multiple ENTs, and the doctors are completely mystified.
11. There may be a possibly be a fungal infection, possibly invasive, that doesn’t flush out with saline, but that’s just a hypothesis.
12. Another hypothesis: Some of the problems may be caused by the same kind of bacteria that cause tonsilloliths, or tonsil stones.
13. Finally, some patients have doctors who have diagnosed a yeast infection in the gut, which cause the smell which comes out through the sinuses or breath, and prescribed Fluconazole 150mg. This looks somewhat promising, but Fluconazole must be administered by a doctor at any rate. Here is the Medhelp thread for that:
For some more information about the fungus, put the following in your search engine:
“Fungal Theory Debated in Amphotericin B Controversy”
That's all I got. Good luck
Hi, I'm 29 and I have recently experienced a similar thing, my nose gets congested (doctors say its due to hayfever but i get it all year round). As soon as I blow my nose I smell something rotten, the smell is hard to describe but its almost like rotten meat...Anyway I recently tried something new today and eat some natural yoghurt, the smell seemed to go away!
I haven't had the "condition" in quite a while. I've never been able to pinpoint a cause or trigger. I thought it might have been when the air is dry or rapid temperature changes such as when you go from a warm building to the cold outdoors, but I think I all but disproved that as a trigger. I am truly baffled as to what causes it. The seizure theory is kind of unsettling. I get ocular migaines quite often and I wonder if the two could be related. If the smell condition returns with more frequency, I am going to make an appointment with a specialist. Good luck and please let me know if you receive a definitive diagnosis.
I experience the same thing. It started about a year ago and for the longest time I thought maybe it was the water I was drinking at work, or the dust in my office. When the odor is triggered it does smell like mold or dust to me, so my best guess was dust. For a while it was happening maybe 2 to 3 times a week and the odor would last for a full day until I slept. Lately it's been less frequent. It happened yesterday and finally prompted me to do some searching online and that's how I came across this forum. I am relieved to know I'm not crazy and this happens to other people! I've only really told one person about it becasue I honestly just don't know how to describe it to anyone. I too find the seizure theory to be a bit unsettling. I also get migraines frequently and yesterday before the odor was triggered, I was feeling very dizzy, fatigued and nauseous and when I blew my nose the odor came, and the nausea was gone (not sure if there was any connection there or not). Another bizarre change since this started, which could just be a complete coincidence, is that I haven't gotten a cold in over a year. I normally get 2 to 3 colds each year. This is the first year in my life that I haven't had one. It does sort of feel like I have a cold when the condition is triggered, but then it only lasts that day. I haven't read about anyone else having that same effect, but I'm interested if there's any connection. Anyway, I'm in the same boat as you. If this starts happening more frequently I may consider reaching out to the Dr. Henkin that was mentioned earlier. Good luck to you and keep us posted on here if you find more information!
I wonder if there is a connection between the smell condition and the migraines. I have been experiencing the migraines a lot lately, especially the ocular type. I haven't had the smell condition in quite a while. It is very frustrating as you want to let people know how truly bad the condition is and how it makes you feel, but I don't think that people would understand unless they experience the condition themselves. It can really affect your mood as you cannot enjoy eating at all when you have it. Don't let it get you down. The human body is truly a mystery, isn't it?
Have you seen anyone for this? I have the same symptoms and even the occular migraines. It has gotten worse over the years and I am afraid to tell anyone, much less see a doctor. I think part of me fears that it could be something serious and part of me feels they will think I'm crazy. It is so hard to explain especially when there isnt much information out there to back it up. It makes every day living difficult to enjoy things and always worrying that this will come on. If anyone had any definite explanation it would be helpful.
I have the same problem! I was thinking we should compare lift styles - see if there are any common denominators. This is by no means scientific but here goes:
I'm 24 Single, Male, live in the Countryside.
- don't smoke
- do little or no exercise
- drink socially at weekends (not excessively)
- am of normal weight
- have 6 cats
- eat a diet heavy in meat, particularly red
I experience the 'thing' when I blow my nose, sneeze, cough, bend, inhale suddenly - once this has happened it will tend to subside for 12 hours or more. It temporarily ruins my taste and smells disgusting for an hour or so. It makes me self conscious as I wonder if anyone else can smell it - although, one person in this thread said his wife couldn't detect it!
Last year I visited Edinburgh for a week where the problem cleared up. I was exercising regularly (walking miles per day) and stayed in a house with no pets. I drank heavily and ate a lot of crap (maybe that's the way forward ; )
Again, I make no conclusions, but this is my story.
The only common denominator is that I have a cat. Note that I don't think that it is caused or triggered by pets since I can get it when I am not in my house and not near any animals. One time I got it when I was on a cruise ship, and I remember being so disappointed that I would not enjoy the delicious food that day on the ship. I don't eat a lot of red meat and I only drink occasionally. This condition is such a mystery. It comes and goes and there seems to be no obvious connection to anything in the environment. As a matter of fact, I haven't had it in weeks. I even had a very bad head cold about 6 weeks ago and I don't recall getting the condition when I had the cold. Normally, when I do have a cold, the bad smell condition will occur once or twice throughout the duration of the cold. I try to connect it to the weather, the time of year, etc, etc and it just seems to me that it is very random. A sneeze or blowing my nose can bring it on, but only at very infrequent times. I hate it when I get it in the morning, because I know I will be stuck with it the entire day. It sometimes goes away overnight but not always. For folks who have never experienced it, it's difficult to explain to them what it is and how miserable it could make you feel. This condition can actually affect your mood and it's not only about enjoying food.
I'm trying a different deodorant at the moment as I saw a post above that mentioned it. When I was in Edinburgh for the week where it went away I was using a roll-on and not a spray. Today I haven't had it when I usually do - shall continue to monitor the situation!
I agree though, it is unlikely to be caused by pets.
There must be an answer! We need to keep looking!
It's been over a week now since I switched to a roll-on anti-perspirant and I can honestly say I've noticed a big improvement. It's reduced the frequency, and also, when it does come on it seems less severe and passes far quicker.
The roll-on has very similar ingredients to the spray I'm using, so I can only imagine it's down to using less deodorant. I tend to spray fairly liberally as opposed to my frugal use with the roll on.
Encouraged by these findings, I am going to try some non-aluminium deodorant next!
Give it a try and see what you think.
That's interesting. I use Menen speedstick deodorant. I haven't used a spray in years. I did get the condition last week. It's been a while since I had it prior to last week. Not sure what brought it on.
I've had this condition since I was about 9 years old. I am 29 now. It used to happen once every six months, until 3 years ago it started coming on pretty much every day. It ruined my mood every time. I've tried going to so many doctors, from general doctors to ENT specialists to neurosurgeons. Nobody knew what it was or how to help.
Finally I have found a solution through homeopathy! The condition has something to do with memory and how the cells in your brain have memorized something wrong and are therefore sending the wrong signals and so this smell gets produced at wrong times.
Since using specific homeopathic products for the last 6 months, my condition is pretty much non-existent.
If anybody would like more information about this, please let me know! It has changed my life.
I've had this for about 4 years now.
It'll go about 2~3 weeks and goes away.
I live in TX and I have bad BAD seasonal allergies from pollens, trees, grass, etc etc.
It's driving my nuts! I have the smell 24/7 until it goes away.
I feel like throwing up and have really bad headache.
Seems like im intoxicated with this awful smell.
I'm going to try neti pot method tonight and see if it helps any.
Any more info to pinpoint this cause would be great!
I called the clinic. They seem like they know more than any of the ENT docs I've seen. But they charge $4100 and don't accept insurance. For that kind of money, they should guarantee a cure. But they don't.
I called the clinic - tasteandsmell.com. They seem to be the real deal. They ask questions over the phone that none of my ENT doctors have asked. But they're expensive - $4100 and they don't take insurance. For that kind of money they should offer a guarantee, but they don't.