Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Phantom Smell


Claire

Recommended Posts

Claire Collaborator

Has anyone on this forum experienced 'phantom smell' otherwise known as 'olfactory hallucination'? This is thought to be a sign of partial seizures. I have had this for many years though it is infrequent - often even years between episodes. An episode consists of brief sensations of a smell that is obviously not actually present. These last seconds and occur every few minutes or sometimes at longer intervals. Episodes may go on for a few days - as long as a couple of weeks - then the sensation disappears to come back some other time. Rather weird.

I am lucky - what I smell is not unpleasant (I cannot identify it). Some people have actually become suicidal because the smell was so intolerable - making it impossible to eat or sleep.

If anyone out there has experienced this I would like to hear from you. I have never spoken with anyone else with this bizarre symptom. Claire


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



skbird Contributor

This doesn't quite fit me but I have had several episodes of smelling something concrete then smelling it everywhere for the next day or so. Worst case was when we saw a cat that got hit by a car right in front of us, and for the next two days I could smell it at the oddest moments. In fact, during that time I was undergoing diagnosis for bipolar (which in the end I wasn't) and my doc thought I was having psychotic episodes and put me on a med for it! (risperidol).

This happened again recently, I can't think for the life of me what it was, but something like a food I'd eaten, and I could smell it repeatedly for about two days in the oddest moments.

Stephanie

cgilsing Enthusiast

I myself have not had experienced phantom smells, but I have an epileptic friend who claims to always smell cucumbers before she has a seizure. You mentioned partial seizure in your post....what is a partial seizure? Do you have any history of epilepsy? It is a blessing for my friend too, because when she smells cucumbers she knows to get to somewhere safe. That's some really interesting stuff!

Canadian Karen Community Regular

That reminds me of a commercial that used to be on here in Canada. It is one of our "Part of our Heritage" series of commercials. It had a woman who always smelled burnt toast just before a seizure came on, and in the commercial it showed a Canadian brain surgeon operating on her brain and touching different parts of her brain until she identified that she smelled burnt toast (yep, she was wide awake!!! :o ). He then corrected or removed that part of her brain.....

Karen

kvogt Rookie

For a few months prior to diagnosis, I had the experience of getting whiffs of an amonia-like odor. Went away a few months into the diet.

jknnej Collaborator

I get that when my reflux is acting up badly for some reason. Or when I get a sinus infection; then it's really bad. Stuff smells foul and sometimes I even ask people if they smell that. They think I'm crazy!

Carriefaith Enthusiast
Has anyone on this forum experienced 'phantom smell' otherwise known as 'olfactory hallucination'? This is thought to be a sign of partial seizures.
I would talk to your doctor about this. This may be a sign of a seizure which is a complication of celiac disease. Open Original Shared Link

That reminds me of a commercial that used to be on here in Canada. It is one of our "Part of our Heritage" series of commercials. It had a woman who always smelled burnt toast just before a seizure came on, and in the commercial it showed a Canadian brain surgeon operating on her brain and touching different parts of her brain until she identified that she smelled burnt toast (yep, she was wide awake!!! ohmy.gif ). He then corrected or removed that part of her brain.....
I remember that commercial too :) Those commercials can be educational!

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,016
    • Most Online (within 30 mins)
      7,748

    Chloelouise04
    Newest Member
    Chloelouise04
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • Jmartes71
      Im so frustrated and still getting the run around trying to reprove my celiac disease which my past primary ignored for 25 years.I understand that theres a ray of medical that doctors are limited too but not listening and telling the patient ( me) that im not as sensitive as I think and NOT celiac!Correction Mr white coat its not what I think but for cause and affect and past test that are not sticking in my medical records.I get sick violently with foods consumed, not eating the foods will show Im fabulous. After many blood draws and going through doctors I have the HLA- DQ2 positive which I read in a study that Iran conducted that the severity in celiac is in that gene.Im glutenfree and dealing with related issues which core issue of celiac isn't addressed. My skin, right eye, left leg diagestive issues affected. I have high blood pressure because im in pain.Im waisting my time on trying to reprove that Im celiac which is not a disease I want, but unfortunately have.It  has taken over my life personally and professionally. How do I stop getting medically gaslight and get the help needed to bounce back if I ever do bounce back to normal? I thought I was in good care with " celiac specialist " but in her eyes Im good.Im NOT.Sibo positive, IBS, Chronic Fatigue just to name a few and its all related to what I like to call a ghost disease ( celiac) since doctors don't seem to take it seriously. 
    • trents
      @Martha Mitchell, your reaction to the lens implant with gluten sounds like it could be an allergic reaction rather than a celiac reaction. It is possible for a celiac to be also allergic to gluten as it is a protein component in wheat, barley and rye.
    • JoJo0611
    • Martha Mitchell
      Scott I also have different symptoms than most people. It affects me bad. Stomach ache, headache, nauseous, heart racing, whole body shaking, can't walk then my throat starts to close. It attacks my nervous system. The only thing that saves me is a 1/2 of Xanax...it calms down my nervous system 
    • Martha Mitchell
      Scott Adams. I was dealing with a DR that didn't care about me being celiac. I repeatedly told him that I was celiac and is everything gluten-free. He put an acrylic lens from j&j. I called the company to ask about gluten and was told yes that the acrylic they use has gluten....then they back tracked immediately and stopped talking to me. The Dr didn't care that I was having issues. It took me 6 months and a lot of sickness to get it removed.... which can only happen within 6 months. The Dr that took it out said that it was fused and that's why I lost vision. If they would have removed it right away everything would be fine. He put in a silicone one that was gluten-free and I've had no issues at all in the other eye. Do not do acrylic!
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.