Unusual Smell

[Debbie8730]

Approx. 7 weeks ago I started noticing a faint smell that I could not describe.  As the days went by, the smell became more frequent.  After weeks, the smell consumed me.  The smell is not as strong when I awake in the mornings.  As the day progresses, it grows stronger & stronger.  I have a history of migranes, just on the left side.  I had a really bad migrane in the middle of August.  My doctor put me on Topamax to try to help the migranes.  The dosage I maintained was 125 mg. in the AM and 50 mg at night.   As of this past Tuesday, I have quit the Topamax, cold turkey, to see if that could possibly be causing this smell.  I have been to my MD.  I have had a Sinus CT, Chest X-Rays, MRI with & without contrast run.  All show clear of infection or tumors.  I have been to an ENT Specialist & was clear.  I was seen by a Neurologist this past week and they have not the first clue as to what is going on.  The blood test that have been run show I have a virus and a very low folic acid count.  The neuro said that would indicate I had been on a diet, which is not the case.  The neuro said that the situation would just have to be monitored!  I seem to have energy in the mornings and around middle of the afternoon, start going downhill fast.  The smell comes on very strong.  I almost feel as though I have a slight fever, no energy at all to the point of not moving.  I believe that something is wrong with me and should I change doctors and get a second opinion or just stay with this neurologist and keep monitoring the situation.  I realize that it could be a side effect of the Topamax, even though the doctors do not seem to think it is.  How long before this medication should be completely out of my system so that I would know?

[Pgil]

Does the smell issue go away when you stop taking Topamax? I haven't taken it in about 5 day...still having the weird smells.

[Mesomorphprincess]

Hi you all,
  I have recently been having the burnt smell since being on Topamax for weight loss. I thought the smell was coming from my skin and was embarrassed to get close to anyone. I started asking my friends and family if I smelled different, and no one could smell what I was smelling. I asked my Doc who prescribed the Topamax and he agreed that it was from the medicine that I was experiencing the odor. He said certain foods may also taste bad or acidic, but I have not had that problem. Im glad I didnt get the MRI that I was scheduled to get. My CT was negative as well.

Lisa

[Jen_R]

Jen,
I have the same story - it feels so good to read that there are others out there who have experienced this, so that I know I am not just crazy.  I cant tell you how long I have been searching through my house to find out where that burning/smokey smell is coming from.  My doctor's first response was the Topamax that I am taking for migraines.  I questions this since I've been taking it for over 5 years now and these symptoms only started about 3-4 months ago.  It was funny when I read that you also smell scented candles and spray your sheets.  I do the same.  I have to do the same every night before I go to bed - I spray the sheets/blankets and pillows with scented body spray, then I do a new trick, which is taking scented lotion and putting it a little bit in my nostrils and outside of my nostrils (above the lip) - this work pretty well.  I could actually fall asleep now.  Before, the smokey smell made it very difficult for me to fall asleep.  I'm awaiting more answers from my doctor and will ask my neurologist at my next appointment (I see her for my fibromyalgia).  It seems there are so many different responses to what this could be - I am just eager to find it and get back to smelling normally.
Keep me posted if you can,
Jen R.

[countryfanjmm]

Hi Debbie.  I know this thread is a bit older but I am hoping that you are still a member and receiving notice of replies to your thread.  I was wondering if you ever found anything out about this phantom smell you are experiencing.  Minus the medications that you listed, I would almost swear that I wrote your original post above even down to the feeling of being really tired and running out of energy by mid-afternoon.  The only difference in what I experience is that the smell (cigarette smoke for me) can be very strong but does not overpower any other smell.  In fact, to get away from the smell, i will actually sniff scented candles or spray my sheets with a linen spray when i go to bed so that the smoke smell doesn't keep me awake.  I am waiting for neurology to call me to schedule my appointment but in the meantime, i was wondering if you had any luck figuring out what was going on.  
Thanks, Jen

[amjams]

Hello. I was also taking Topomax for Migraines. I had been taking it for months when I started noticing a smell. It was almost like a " baking soda" cleaner type smell. I thought it was something I was spraying at home to cover up cat litter smell. Then I realized I was also smelling it at work. And finally I was at a movie theater and it was very strong and I realized the smell of popcorn had been replaced by this other smell. Then I figured out at work the copy paper smell had been replaced by this smell and at home a number of things like soap and and my cats food, all had this same smell. I called my doctor and he reduced my dose. And things went back to smelling normal.

[dpalm]

I have many of the issues here; a strong sulfur odor (which I can't get out of my sheets), facial twitches, nerve tremors that feel as though my body has been plugged into a low voltage electrical socket & a continual low grade fever which is worse at night (no sweating but feeling like my body is on fire, especially my abdomin). I also have sinus problems but would that cause the sulfur body odor? My energy is lower than it should be. My tumor markers were slightly above normal a few months ago & my iron came back very high. The only medication I take regularly is Synthroid for my thyroid disease & I do take herbal supplements which I've almost all but stopped. I've also had a swollen lymph node behind an ear for about four years now. It started on my left side & literally over night, switched sides. The doctors have no answer for it. This sulfur smell started about a month ago. After waiting to see if it would go away on its own, I'm now going to talk to my doctor(s). I'll research both traditional & alternative medicines & will post whatever results I do find. I'd really love to hear whatever anyone else finds as well. Thanks & good luck to all of us!! This odor is embarrassing!

[Debbie8730]

I have had a CT Scan of the sinus.  It was clear.  Also the MRI was clear.  The smell is nothing like you can imagine.  It comes from inside and takes over.  If you come across an odor that is the least bit strong, this smell magnifies 100 times stronger.

[Duchess47]

I have been smelling something weird for a few months now off and on.  At first I kept thinking someting on the stove was burning becasue that is what it smells like.  It actually smells like a lit match (sulfur).  I have been to a neurologist becasue I also have other symptoms which are muscle twitches of the face.  I am scheduled for a brain MRI next week.  I have read that this type of odor can also be caused by a sinus infection.  

[Debbie8730]

I hope you do not get tired of me before I get a little better!  I researched the different definitions you gave me for a smell disorder.  I fall exactly into the "Parosmia" category if that helps. Also, my Dr. called this evening with lab results.  My folic count was "way" down.  They have put me on a large amount of folic acid. Could that, in itself, have been making me so weak as you stated with a vitamin deficiency?  And, could that also be the culprit of the smell disorder from what you explained as a receptor problem?  Or, am I just wanting an answer for which I do not have one?  Would it be best to go ahead and schedule the EEG?  For the first time in almost 8 weeks, I feel like somebody might know what I am going thru. Thank you for your time.

[Debbie8730]

Thank you for all the information.  I cannot tell you how much I appreciate it.  I really do not know that I understand it all, but I will research it more.  I am trying to wait to make sure that the Topamax is completely out of my system before I schedule more tests.  Hoping that it just might be a side effect.  I was on Effexor 75 mg for a very long time and was winged off of it in June of this year.  It was a good drug for me at the time.  Used for anxiety and hot flashes.  Coming off the drug was a nightmare.  Six weeks slowly and still my Dr. substituted Lexapro to finally get me off the Effexor.  I am wondering if this is still some kind of side effect from that.  My energy level is very weak.  I seem to go until about 2 or 3 in the afternoons and then just run out of all energy.  I have smell, but the underlying smell that I have dominates other smells.  Example is that I made chili on Saturday.  My smell overrode the smell of the chili.  It seems that later in the day when I am the weakest, the smell is so much stronger.  I have taste and I have smell, but the smell inside me overrides other smells and my smell comes on stronger.  It is getting to be depressing at this point.  

[BobbHilton]

Hi,
   Generally speaking, a side effect of a drug could last for few months after stopping it. Scientifically, the half life of Topamax is up to 1 day, and its not reported to redistribute (stay in the fat composition of our body), so it should clear from your system in a week time.
    Drug-induced disturbances of smell and taste are linked together in medical literatures and its a big topic , as its have been reported with a large number of drugs, but I will try to simplified as much as I can.
I will start with some definitions:
       Dysosmia is a general term used to describe all smell disturbances, while a complete loss of smell, termed anosmia, Greek for no smell (is rare anyway)
       Cacosmia is characterized by an interpretation of normal odors as being foul
       Whereas parosmia, is characterized by a perception of an odor that is not present.
      
      Most drug-induced smell disorders involve only a reduced sense of smell, known as hyposmia
      
     The term ageusia (Greek for no taste) is used for loss of taste and hypogeusia for diminished  
      taste.
      
Pathophysiology showed that Injury and impairment of the smell and taste sensory systems may occur at 3 levels:
      1- The receptors on the tongue or in the nose (the bulk of the drug induced problems)
      2- the nerve carrying the sensations
      3- the brain area dealing with the smell and taste information

2 and 3 are less than 5% of the cases

     Drugs may affect the receptors directly or indirectly by causing vitamin and essential element (zinc and copper) deficiencies
     The end results are as follows:
      -Decreased receptor sensitivity
      -Inhibition of receptor turnover
      -Inactivation of events in the receptor (activation of sodium or calcium ion channels).
  
     All leads to lack of generation of action potential (the mail man taking the information), which is   transmitted along taste and smell nerve pathways to the brain.
  
Diagnostic workup (smell or taste) is extensive because the complaints are subjective, thus making objective assessment difficult.
      
The 3 important components of a clinical evaluation include:
    1- History. This is the most important step (like the offending drug in your case).
    2-Physical examination. This includes examination of the ear, nose, and throat as well as neurologic examination which you had.
   3-Laboratory tests like:
        -CT of the head (particularly useful for patients with smell disorders like you , but you had a better test, MRI with GD) ,In general a particular attention is paid to the nasal cavities, anterior cranial fossa, and nasal sinuses.
      
        -Functional MRI and functional PET. Objective tests for assessing the sense of smell (Simmen and Briner in the Journal of Rhinology 2006 issue 44 (2) pages 98 to 101).
        -Electroencephalography and olfactory evoked potentials ( especially if a neurodegenerative disease is expected or the smell issues sounded like seizures (looking for epileptic foci).
    Note: due to some technical problems, gustatory (taste or the Tongue) evoked potentials have not become a routine investigation for taste problems.

        -Biopsy (a specimen) of the olfactory neuroepithelium (the mucosa ): this is not for you. generally this  can be obtained by a needle and is generally a safe procedure ( used in steroid dependent anosmia, posttraumatic anosmia, post trial olfactory dysfunction, and congenital anosmia).

God bless
Bob Hilton