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    Old 10-19-2008, 10:10 AM   #1
    freje
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    Smell disorder problem

    Any ideas would be appreciated here. Since Jan-Feb 2007, I have experienced an intermittent, but ongoing smell problem. It's a "bad" smell, localized to my right nostril. I can go days without an episode, then have 3 days in a row where it happens. It triggers on for no reason at all most of the time, but sometimes an odor *might* cause it to trip off, such as something being fried on a grill, etc. Though not always. This problem distorts my taste and smell-it's like a burnt popcorn, sinus infection, ajax cleanser obnoxious smell. The only way to get rid of it (temporarily) is using a Neti pot type sinus rinse, or tears (a crying episode revealed this!). Before those two, I would just endure, go to bed at night, and it would be gone in the morning. Tears of course are not very handy-I can't make myself cry nor do I want to!! I saw an ENT, had a sinus CAT scan and all. Scan showed a small polyp, but the ENT says this would not be the cause. No infection seen on the scan either. He was pretty dismissive really, gave me Nasonex (which did ZERO, and I later discovered the Neti pot sinus rinse thing on my own) & said to go to a Taste/Smell clinic if that didn't help. (this was 6 months ago!) I'm in the same boat, but the frequency is increasing again. Maybe 2nd ENT opinion is in order before I go through the extreme of a highly specialized center. I'm not happy and this smell is bothersome & distracting when it's present, but I don't want to do the overkill route, if this could be found to be something that can be taken care of (like could it be a fungus or something? could the polyp in fact, indeed BE the cause contrary to what this ENT says, etc)?
    Any ideas, feedback, similar experience? Thanks!!!

    Last edited by freje; 10-19-2008 at 10:11 AM.

     
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    Old 12-21-2010, 06:20 AM   #2
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    Re: Smell disorder problem

    Freje, wow! I'm experiencing the EXACT, SAME problem as you are!!! Everything that you just described in this post I have went through in VERBATIM! You hit it "right on the nose" (no pun intended). Not a single detail from what you're experiencing is different. I have seen so far 3 ENT's, I have had a couple CT scans, and I've been brushed off with the same treatment as you have with no avail. I've also had this problem since the summer of 2002. The ONLY thing that temporarily cures me of this is like you said...the Neti Pot.

    Up until now, I haven't found anyone else who has experienced this issue, and I feel if we work together, maybe we can solve this issue because I'm going through the exact same symptoms, bad chemical (hard to describe) type smell in my RIGHT nostril, and it keeps getting worse over time. I feel like the doctors' I've seen don't really care since it's not exactly a "text book" case. I actually had my tonsils removed in 2005 under the suspicion that they might be the cause of the issue, but to no avail :-(

    I'm hoping that you get the chance to read this post, since I cannot contact you through e-mail. It's about time that this gets dealt with. Thanks.

    -JJ

    Last edited by mod85; 10-08-2011 at 07:15 PM.

     
    Old 12-22-2010, 11:09 AM   #3
    freje
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    Re: Smell disorder problem

    Hey-what total luck I saw your post, considering how old my post was, and the fact that nobody ever replied until now! Turns out, the way the forum is set up leaves me subscribed to this thread still, sending me an e-mail that there was a reply to it, so here I am!

    Well, I am glad to give my feedback and updates in this two years of time! And like you, worse over time! You really do sound just like me too! It's a real joy, eh??The smell would have a duration of, maybe two hours. Well nope, now when it happens, it stays there ALL DAY. The amount of episodes also increased over time. I did in fact, get a second ENT opinion in the fall of 2008, a month after I posted here. This ENT also cleared the smell issue from being ENT related. But he did not leave it at that. He felt there must obviously be something, and he referred me to a neurologist. How pivotal that was! I have been seeing the neurologist for very nearly two years now. Turns out, the neurologist thinks I likely have simple partial seizures which exclusively manifest as an olfactory aura. Right from the first appointment he thought this, based on the abrupt onset of the aura. I’ve had some EEG studies done, including a 72 hour one. That one showed some findings that were suggestive of seizures, but not true epileptogenic activitity. I’ve been on Keppra since March 2009, and initially, the occurrence of the burn smell which was averaging 15-20 times per month, dropped to 13, so the Keppra seemed to be helping. Then it started to jump up even higher, and at this time last year, I was up to 29 days out of the month. And like I said, once the burn smell starts, it does not stop-it is there ALL DAY LONG. I wake up the next morning fine, it’s gone, but then it might be back in an hour or later that day. But having this 29 days in a month, I was getting headaches so reported that, and this then led to the consideration of a migraine variant. So Depakote ER was added early last year, and the Keppra reduced, but I am still on it. Big difference and have had so many less episodes. One month this year, only twice, another only four times. However, unfortunately, it is starting to creep up again. I had 10 in August, but then just 2 in September, 4 in October, but then 8 in November. This month I am at 5, including an episode today. So now I am concerned that the Depakote ER isn’t holding down the fort enough anymore. My neurologist said it’s likely I will still have episodes. The other thing is, while he definitely still more or less feels that I do have simple partial seizures, he has not “formally” put that in my record as a diagnosis, as an unequivocal case. Just that he believes it seems likely. I do not nor have ever lost consciousness. But the fact that I clearly had a response to the Depakote says something neurological to me. I just take it one day at a time.

    I am certainly not a medical person, but you may want to check out a neurological referral.
    My Neti pot deal doesn’t work anymore- maybe 1 out of 20 times it makes the smell go away. When the aura is there, it also affects my taste. Certain food and drink items taste burnt. I’ve just learned to live with that though it is no fun. It also is tiring for the days that I have the smell. I go to sleep much earlier because it is fatiguing, and as the day goes on, I tend to feel a little worn out. Oh, I hold out, hoping my olfactory aura is due to a migraine variant, but that my neuro more or less says that if push comes to shove, it really is more than likely epilepsy, but what appears to be non-progressive in terms of me never having lost consciousness. I basically consider that yes, it's a seizure disorder. I see my neuro every three months. I keep track of every occurrence. I have tried to note triggers-occasionally an actual burn smell in the environment, but mostly it is totally random-I'm at home, outside, at the store, at work, wherever. I also notice nasal congestion sometimes with it.

    I sure hope this is helpful. Others that have the burn smell issue too.

    I surely don't wish a seizure disorder on you, but if that were the issue, it would be a blessing to finally have it addressed.

    Last edited by moderator2; 12-22-2010 at 01:22 PM. Reason: please do not post websites except as described in the Posting Policy

     
    Old 12-22-2010, 12:00 PM   #4
    jjoseph85
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    Re: Smell disorder problem

    WOW! I still can't believe I even ran into your post in the first place!! I was tired of the episodes (just after getting one in the morning here at work) so I googled the symptoms and low and behold, I found your post! Even after reading your reply to my response, still, everything you just described is WORD FOR WORD what is happening to me! One thing that I still can't come down to describing is the type of smell. For me it's not so much a "burning" smell per say, but it definitely affects my taste, and it is nonetheless UNBEARABLE! It only occurs in my right nostril, it sometimes gives me nasal congestion, it used to be triggered if someone was frying something or the smell of an onion, but honestly now it is just pure RANDOM! It can occur at any moment, and has gotten to the point where it lasts ALL DAY! One thing that I did notice is if I inhale abruptly, you know like if I sniff really hard, eventually if not automatically I'll have an episode. I've learned to control certain things such as laugh really hard or sneeze really hard or act like I'm sobbing or sniffing because of it. The Neti Pot used to take care of it right away, but now, there are times where I have to do it quite a few times in order to get it to resolve the smell. I also noticed it gets worse when and after I catch a cold! (I'm coming off of one right now so I'm going through some tough times.) I TOTALLY understand what you say about it being an inconvenience when you're out like at a BBQ or at work or at any social gathering etc. (a couple weeks ago I went to TGI Fridays with some folks and caught an episode on the way :-( Its SO discouraging! Its not like you can take your Neti Pot just anywhere and excuse yourself everytime you get an episode you know? :-\ it sucks.

    Now, I'm glad to hear that you AT LEAST narrowed it down to some sort of resolution. I think I saw a neurologist in 2004, and he put me on some antibiotics, which at first seemed to be good, but in the end to no avail (to be honest with you, now looking back at the situation, I don't think he really cared much or just didn't spend enough time and under-diagnosed the situation, kind of like some of the ENT's that we've seen.) So I guess that means I have to keep trying to find the right one, which is what I will do. I'm thrilled and excited that you were able to get some time of results after being referred to the neurologist, although I am a bit scared by the fact that this could be some seizures and even bringing the word "epilepsy" into it :-/ I hope this isn't something severe nor mental health/life threatening :-( Like you I'm not a medical person myself neither.

    Well, with that said, I'm going to follow in your footsteps and go see a neurologist. I'll also check out those forums too. This NEEDS to be addressed because we can NOT continue living our lives like this, I almost forgot what peace and tranquility without the interruption of this obnoxious smell was like. It puts a damper on life, and you're afraid because you don't know when the next episode is going to occur ESPECIALLY if you're around other people or at some place away from home for a long time and away from the Neti Pot. It almost makes me envy other people because they don't have to deal with it. I feel like this can be resolved eventually with both of us on the case. Well, thanks for responding back so promptly! And GOOD LUCK! Hope to be hearing from you soon.
    -JJ

     
    Old 12-22-2010, 02:37 PM   #5
    freje
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    Re: Smell disorder problem

    jjoseph, . I use my seizure diary to let my neuro know the EXACT number I have and any type of possible trigger.

    Anyway, oh yeah-I can relate to the sneezing part. Sometimes, a sneeze triggers an episode, or at least seems to. Several times, after laughing, same thing. For me, like an exhale laughter, I have had several auras right after that.

    and yeah-epilepsy sounds scary, I know. But no, seizure issues are not mental health! I never worry about that. I continue to live a full, active life, work Full-time, drive, the whole 9 yards. Don't live my life scared if it is in fact a seizure disorder. I always do still hope that it could somehow turn out to be the rare migraine olfactory aura, but not sure I will ever know.

    But yes, it is SOOOOOOO annoying to not be able to predict when I might have one. Like if going out to dinner, it's like, please let this NOT happen.

    And actually, yes, a few times I would swear frying food smells or something baking in an oven has set if off too. So you walk around like, oh no, is it or is it not going to trigger???

    Last edited by moderator2; 12-22-2010 at 06:35 PM.

     
    Old 12-22-2010, 03:01 PM   #6
    jjoseph85
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    Re: Smell disorder problem

    YEAH I KNOW RIGHT?! I'm almost 100% sure that by now we're definitely talking about the same thing. As a matter of a fact, I'm positive we have the same exact problem. It saps out all of the enjoyable things in life. I feel like I can't be over any of my friends' house, or to any parties without the fear of catching another episode :-( Or just completing a full days of work without worrying about getting an episode before lunch or too long before I can go home and cure it with the Neti Pot. And like you said, it's gotten worse over time! And its SOOO RANDOM! :-\ I don't know what else to say. What pleases me though, is that all these years of me having to try to explain this issue to people and my doctors...you've been able to relay it as if it came RIGHT OUT of my own mind! Its eerie how this is the EXACT SAME thing that I'm experiencing. This SAME problem that I have SO MUCH trouble explaining to others! I try to explain to them...you can't even BEGIN to imagine the HORROR because you haven't experienced it!!! And I try to give an analogy and equate it with something reeeeeeeeeally bad, but its SOOO hard to describe it! I don't even have words!

    But you nailed it though, which is what I feel is truly Miraculous. I hope we can finally find a solution to this because honestly, I don't know how I can continue to live my life like this :-\ I'm pretty sure you feel the same. I hope if anyone else out there is reading this you can bring some suggestions to the table. Keep in mind though, at this point we've been through a whole lot of "back and forth" between medical personnel.

    Last edited by moderator2; 12-22-2010 at 06:36 PM.

     
    Old 12-23-2010, 08:32 AM   #7
    freje
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    Re: Smell disorder problem

    Yes indeed! Thankfully though, I have a neurologist now who knows this is not craziness. And the 2nd ENT who was a true professional in referring me. My neurologist does not outwardly label in my record that I have simple partial seizures, but between, he and I and a lamp post, it's like, yes, that's pretty much likely what is going on. He is conservative, and the fact that my auras don't progress, it's like, why go out of the way to force a label on me that could affect me. So treat the symptoms. It's clear that Depakote ER has been helpful, and I still have never gone back up to 15 or more auras per month. Today, I woke up, smell is gone, knock on wood it's a clear day. One thing for sure, there are A LOT more clear days for me now than before, but it also has crept up a little in the last few months. I actually do okay with the taste thing-maybe a mind set-can eat most foods and deal with it, but coffee and soda, no way around readjusting how bad they taste with the burn smell odor. And yes, chemical quality odor it does take on too, as I described. I just wish the medication would completely take the aura away, but if it is a seizure disorder, I think this is the type that is the hardest to totally stop-temporal lobe area ones. Again, no medical person am I, and I still like to flirt with the idea that it really is a migraine variant. But the random nature and sudden onset makes me think, hmmm. And you are so right-to explain it to others without looking bizarre! I knew right from the start that whatever it was is a physiological thing, and not mental health. But for olfactory auras to be connected to neurological issues, it is surprising that any ENT wouldn't suggest that, when they come up empty on their end of the spectrum. The first one I went to, (who by the way was like in a who's who list of top docs-what a joke) who totally blew me off.-to think he wouldn't know to refer to a neurologist is beyond me. And to then dismiss me like I was now wasting his time when I had to wait first for him, oh give me a break! Totally useless.
    I do think though I'm on the right path. I think it is likely a seizure disorder, but to just keep getting monitored, and as long as I don't keel over, hope that medication adjustments can suppress episodes.

    Last edited by freje; 12-23-2010 at 08:34 AM.

     
    Old 01-10-2011, 08:16 AM   #8
    jjoseph85
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    Re: Smell disorder problem

    Hi freje,

    I COMPLETELY 100% agree with you! Its hard to explain and I can't believe there are ENT's out there that don't even pay attention to us! They completely blow us and our observations off, its like they don't even take into consideration what we're telling them, they just do their normal routine textbook checks and if that turns out ok, then in their book everything's "just fine" and they "can't seem to see what the problem is." Well...HEY! did you listen to anything I just said?! I'm sorry to come off frustrated but this is a frustrating issue. I've caught SO many episodes since I last replied to you its horrible! And it takes a good amount of times of running the Neti Pot in order to solve the problem, but of course day by day it keeps coming back, and of course at the most inopportune times (like at work.)

    Right now I'm just started a new job, so I'm waiting to be put on the healthcare plan so that I can find a good neurologist. Any suggestions? I'd appreciate it. Thanks freje! How have you been by the way?

     
    Old 10-08-2011, 07:09 PM   #9
    freje
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    Re: Smell disorder problem

    Wow, it's been a while. I've been so busy. I'm still in the same boat. This month had 4 episodes so far, but at least this week have been able to get the Neti pot deal to get rid of the smell, but it doesn't work every single time, but this week 3 out of 4 it did. My neuro pretty much thinks it's an atypical migraine variant, and I went through a trial of Topimax which produced wicked side effects that were as bad as the auras, so I stopped it. I've been on Lamictal for a few months now, and it also does not totally stop them, but it's better than the 15-20 I used to get a month, as well as the few times I had 29, as in every day almost for a month. Triggers remain random, and just as described. We both in this thread still sound the same. I just in my mind every day say that this is a weird migraine variant and not really simple partial seizures, but the neuro does think I'd have had a secondary generalized seizure by now, so I can only just hope it's migraine related, and live my life. I just wish I could know for certain it's migraine, and if it really was seizures, at least I'm on medications for seizures anyway. The Topimax was for the idea that it's also has official use for migraines while also being a seizure medication, but the muscle twitches it caused me made me look downright bizarre and I have to work for a living and can't afford to look that way, plus, the Lamictal has been just as effective, as in, for the most part, at least I haven't gone over more than 10 auras per month and sometimes it's 5 or so. I just have to take it the way it is.

    Last edited by freje; 10-08-2011 at 07:10 PM.

     
    Old 10-11-2011, 06:11 PM   #10
    cocolopez
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    Re: Smell disorder problem

    I have a similliar problem and would appreciate any help or advice. I started noticing my sense of smell was off when I would get up in the morning and the coffe had a bad odor. Long and short it has gotten worse. Most food smells bad, like the coffee. Then I have this other odor that pretty much stays with me most of the day. MRI and CT neg. Saw neuro who said my eeg was showing spikes and I had "seizure tendencies" She prescribed Keppra which I only took for one day because it made me totally exhausted and i was not sure I even believed her diagnosis . Maybe denial. Anyway I don't have another appt until the first of November. My question is how long were you on the Keppra before you were not tired all the time. Also even when you were on Keppra you were still having that smell?? I am an RN and know intellectually I should take the med. But do not want to start a mind altering drug without more info. Neuro too busy to see me until NOv. prob will look for another for second opinion. thanks for any advice coco

     
    Old 10-24-2011, 08:45 PM   #11
    freje
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    Re: Smell disorder problem

    Quote:
    Originally Posted by cocolopez View Post
    I have a similliar problem and would appreciate any help or advice. I started noticing my sense of smell was off when I would get up in the morning and the coffe had a bad odor. Long and short it has gotten worse. Most food smells bad, like the coffee. Then I have this other odor that pretty much stays with me most of the day. MRI and CT neg. Saw neuro who said my eeg was showing spikes and I had "seizure tendencies" She prescribed Keppra which I only took for one day because it made me totally exhausted and i was not sure I even believed her diagnosis . Maybe denial. Anyway I don't have another appt until the first of November. My question is how long were you on the Keppra before you were not tired all the time. Also even when you were on Keppra you were still having that smell?? I am an RN and know intellectually I should take the med. But do not want to start a mind altering drug without more info. Neuro too busy to see me until NOv. prob will look for another for second opinion. thanks for any advice coco
    Sorry for the late reply. Your symptoms sound similar. Does your taste get affected too? Mine sure does! I had a 72 hour EEG about 2 years ago. It showed spikes and sharp waves, well, basically hints toward possible seizure activity, but then the persistance of + 4 years with no progression lends my neuro to think this is more atypical migraine aura issues, especially as certain smells 90% of the time will cause the aura. But equally I get the aura randomly. I also can get vague headaches, and occasionally I get a severe episode with nausea and sometimes even vomiting, but I take an NSAID, and take a couple hour nap, and usually while I still feel worn out, the headache itself is already gone after a nap. My last severe episode was almost a year ago, and it had been several years since I'd had one.
    As for the Keppra, I've never had side effects. I remain on it still, and it's never sedated me. Topamax kind of did at first. I'm also on Lamictal, and no side effects there. Topamax however caused me terrible facial twitches so I went off of it leading to Lamictal as the next effort. Nothing has totally stopped the auras, but with two anticonvulsants, I have less auras than without, or with Keppra alone. I always hope it's really not a seizure disorder, but in any event, it is seeming to be migraines, but I figure just take the medication to offset any amount of the auras.

     
    Old 10-18-2012, 04:26 PM   #12
    hpbgem209
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    Re: Smell disorder problem

    Hi, I've been having a similar if not the same problem. It started out one day I was getting ready for work and I started smelling something weird and I was asking people all day if they could smell it on me and no one could. It became more frequent. I pay very close attention to exactly how they are trigger. It is often triggered by laughing hard and smoke. I can start it intentionally just by blowing my nose. neti-pot usually relieves it for a few hours or the rest of the day but it must be the perfect temperature and saline mixture and when the smell is really bad I might have to do it twice. If I have the smell all day long, no matter what it goes away when I sleep and wake up the next morning. I saw an ENT that had never heard of such a thing but ordered me a sinus CT, the scan was normal, she sent me to an allergist where I just found out that i have normal allergies and the only other thing she could think of was sending me to a neurologist but I never went... I thought a seizure would be more likely if I got other symptoms with it like headache. Anyways, so I didn't do anything for almost a year because I didn't know where to go for help. I'm a physiology student and we dissected brains one day and I decided I would ask my teacher if he had ever heard of such a thing and HE DID! I was so happy just that he didn't give me that same look that my ENT did... He said he thinks it was coming from my chest, head, or stomach. I tried taking HLC with papyian extract which would break up any food that could be rotting in my stomach from not having a high enough pH level. The smell was worse than ever!! So I stopped taking that and started taking Prilosec for acid reflux and I am back to my normal 5-7 times a week episode. I got a chest xray to see if I had lung cancer or a fungus in my lungs and it was clear. The most likely cause that we are coming after ruling out the last things is mold...which scares me because it could mean I need to move. The smell started coming on 6 months after I moved into a new house in 2010. We had found mold behind our counters from a leaky dishwasher and had to tear out some of the sheet rock. The problem is, mold could be in other places that we don't no about like in the carpet, ac, walls, attic, who knows. Do any of you have any signs of mold in your house? Even on the bathroom ceiling or around windows? do either of you have allergies to mold? Last year I had a couple sinus infections and the antibiotics they put me on made the smell go away for a while but it came back. Antibiotics wouldn't kill fungus, it would stun it which I am taking as a sign. I should be getting an antifungal nasal spray soon and I am really crossing my fingers. If that doesn't work I will see a neurologist. After that I am going to drown in my own sorrows because I can't take any more of this I constantly have to remind myself that other people can't smell, or see, or hear so I don't have it so bad.
    Oh and BTW I have totally put my sinus rinse in my purse when I am going out to dinner and washed my nose in the bathroom sink!! I was tired of wasting money and good food on my stupid problem! I've had it for almost 2 years.

     
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