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!