• Lesley Scheerle posted an update 4 years, 3 months ago

    @charlene-marshall Hi Charlene: You and Aishia both mentioned smelling things when there weren’t there. I have the same problem and mentioned it to my Dr. and all he said was “I’ve never heard of that before.” That was last summer. It’s still a problem because I smell smoke when there isn’t any. So I finally decided to do a little research myself last night. On http://www.verywell.com/disorders-of-olfaction-2488765 I found my answer. ” PAROSMIA refers to a change in perception of an odor. PHANTOSMIA in contrast, refers to the perception of a smell which is not present. With parasomia, an odor may smell different that it did to you in the past, or you may now findan odor repulsive which you previously enjoyed. With phantosmia, you may, for example, smell a campfire when there is not a campfire present.” That’s exactly my diagnosis! Just wait till I see my Dr. next month and show him the printoff that I took from this article. Hope this helps you the same way it helped me understand. Lesley.

    • Hi @lesley-scheerle, I hope you’re having a great day! This is fascinating to me, thank you so much for sharing what you found. It is amazing what we can find out when we take our health and advocacy into our own hands. Please do let us know what your Doctor says when you show him this article! @aishia-moaishia, isn’t this interesting? I’d love to learn more about this and in particular, how many other people with IPF experience something similar to what we mentioned. I think I might make a post about this! I find in general I am a lot more sensitive to smell, partially because I am always trying to be mindful of smells that could trigger a respiratory episode for me and also because I think my oxygen use has increased my sensitivity to smell. Something that really bothers me (and didn’t at first) is when I change my oxygen cannula and the plastic smell feels overwhelming to me, but I am working on trying to manage this. Did you notice this started for your after your diagnosis as well Lesley? Thank you again for sharing, I find this so interesting!

      Charlene.

      • Hi again Sharlene: I started smelling ‘smoke’ and sometimes ‘ozone’ when of course there was neither. This was well before diagnosed so I think it has more to do with sinus that anything else.
        You also mentioned the problem of the horrible plastic smell of new cannulas. I don’t know what kind you use, but there silicone and acrylic ones. I understand the acrylic ones don’t smell.
        As I mentioned in one of my previous notes, there are two really interesting vidios from Chanel White on youtube giving a pretty thorough review of many cannulas, their manufacturers, and which ones she prefers and the reason for her preference. It’s under http://www.thetubefedwife.blogspot.com/p/videos.html The websise sometimes comes up as ‘unavailable’, but just ignore that and click on ‘videos’ She also has a another video under the same title, but it’s about The newest cannula on the market. It’s fantastic! Be sure to watch both. Lesley

        • Hi @lesley-scheerle, thanks for following up and sharing your comments, it is wonderful to hear from you as always. How is your week going?

          I am interested in hearing from others if they have experienced an increase sense of smell, or smelling things that aren’t actually presented as well. I would imagine, as you say, it is sinus-related but I’d be curious to know how many other people with IPF have experienced something similar.

          Thank you for sharing the link from Chanel White regarding oxygen cannula’s, I will be sure to check them out. I have ordered a few of the silicone cannulas which just came recently so when I open them and begin using them I’ll let you know if the smell is less, which I imagine it would be. Thanks again so much for sharing, I really appreciate it! I hope you’re doing well!

          Charlene

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