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    • #11349
      Lesley Scheerle
      Participant

      Hi Sharlene: You asked if my sense of smell changed after diagnosis. No it happened about a year before. For anyone else with the same problem, go to https://www.verywell.com/disprders-of-olfaction-2488765

      There it explains what causes it (to some extent) and what kinds there are. I often smell smoke – when there’s nothing there. I found my answer at the above website. (Sorry, I don’t know how to highlight the website so you just have to click on it to get you there.) It answered the question of ‘Am I Nuts?’ No, it’s real.

      You also mentioned the almost unbearable plasitc smell of new cannulas.  I believe there are now soft acrylic cannulas that don’t have any smell at all. Probably worth looking into. I found this information on youtube.

      In the google header, type in    Oxygen cannula reviews site. Then type in   Breath in easy, not ugly!

      The video is made by a young woman named Chanel White. She has multiple illnesses but is a real inspiration. I hope this helps.     Lesley

       

    • #11353

      Hi Lesley,

      This is such helpful information to share with the group, especially since you provided a link for people to read up on it if they are experiencing similar symptoms as you. I’m really glad you’ve made it a topic and shared it on the forums. I’m going to boost it tomorrow on our social media pages (anonymously, of course) to see if others’ have experienced this as well, and to share the link to help them understand more too!

      I appreciate the link to Chanel White’s videos as well, I will definitely check them out. Someone recently suggested putting just the slightest bit of an essential oil, like peppermint for example, on the cannula to mask the smell of the plastic. Since essential oils are pure and therapeutic, I’d think that even touching a bit of it to plastic might not be safe, especially with the flow of oxygen going through the tubing. It is a good idea, but similar to using vasaline in your nose when using oxygen, there can be unknown effects that are unhealthy and potentially dangerous for us. To go for a safer option, I’ll check out the recommendations Chanel makes in her videos. Thanks again!

      How are you doing? Ontario just had a couple of days worth of beautiful weather (+ 14 degrees C) and tonight the temperature has dropped significantly to -3 and it is very windy and damp so I am struggling to breathe a bit, plus I sadly have a bit of a cold. I am hoping that your weather is much more pleasant than ours and that you are doing well!

      Take care,
      Charlene

    • #25061
      Luke R Matthews
      Participant

      Hi, I have been wanting to start a topic thread on this but I don’t really know how to do that. I did go to google and asked about this topic and one of the links was this thread. I know it is over two years old but I thought I would try posting.

      I have a very similar experience with smells as Lesley. I do sometimes smell smoke, mostly like cigarette smoke. At times my sense of smell seems to be greatly diminished. And at other times it seems to be super heightened to where the smell is almost overwhelming.

      I have begun diffusing essential oils in my house and that seems to help. Oils like eucalyptus, or lavender, or peppermint.

      Anyway I am glad to know that I am not completely crazy. This website has been such a blessing to me in so many ways by sharing the information that we each have about this disease.

      Luke

    • #25062

      Hi Luke,

      Thanks so much for bringing up this topic – it’s been done correctly, and I’d be curious who shares this same experience as we definitely have new members since the original post you reference.

      I can’t share a lot of personal experience on this topic, especially as it pertains to a diminished sense of smell as I am typically the opposite. More times than not, it feels like I’m very sensitive to smell. This is especially true for strong scents like cigarette smoke, perfumes, flowers, etc. They can overwhelm me quickly and oftentimes even trigger a cough. I use oils as well, and the three scents you mentioned I find particularly helpful for me!

      Does anyone else notice an olfactory change since their IPF/PF diagnosis?

      Glad you’ve found the forums helpful Luke.
      Take care,
      Charlene

    • #28122
      Donald Salzberg MD
      Participant

      Good AM. I was reading about loss of/abnormal sense of smell and I was brought to this forum. I will look at the link posted by Lesley. Thank you.
      Ive posted in the past. I was diagnosed with IPF in 2018 at age 63 but I never tied my changes in smell to this. My sense of smell changed for a few years—assumed it was something foul in my home or medical office. It does wax and wane and that smell of smoke/foul odor persists. Went to ENT and no chronic sinus infection. Taste less affected. My body/skin just smells different and this predated OFEV use!

      I would like to start a forum to see how many of you experience/experiencing non-respiratory symptoms associated with IPF. I was blessed with perfect health until age 63 and ran a successful solo medical practice. All of a sudden (almost overnight) I would have these intense symptoms by late morning: fatigue; brain fog; palpitations; body aching; abnormal smells (intensified) but no typical shortness of breath/cough. I NEVER cancelled patients but 3-4 days a week for months I cancelled 20 patient appointments a day. I truly thought I was burnt out and needed antidepressants. After 4 months I had an acute breathing event (thought i had asthma) and finally knew I had a lung issue (sounded like Hypersensitivity Pneumonitis). I’m grateful my PFTs are relatively stable with minimal respiratory issues BUT every day (typically afternoons) I become extremely fatigued and foggy and loss of appetite and just feel disconnected. This is similar to how I felt before OFEV. This has been a battle for 3-4 years. I’m so curious if others have had this. It just comes and goes and seems unrelated to nutrition, sleep, mood, weather. I’ve had other things tested and I’m “normal” (God help this planet)!!  Thank you again Charlene

      Don Salzberg MD

      • #28149

        Hi Don,

        Thanks for writing and contributing to this thread. As always, it is nice to hear from you! There have been a few forum threads of people discussing non-respiratory symptoms of IPF. You can likely find some if you use the search bar on the left-hand side of the forums homepage; you’d just have to type in something specific. I know some people have mentioned things like GERD, leg pain, increased sense of smell (I have this!), hair loss, temperature fluctuations etc. Its been my experience that many of us have similar symptoms that are not respiratory related and we rarely attribute them to IPF… it’s been so interesting to learn from others here. You’re most welcome for the forums as well! 🙂
        Char.

    • #28123
      Kristina grilo
      Participant

      If any of you have pets, be careful diffusing essential oils, some of them are lethal to our pets

    • #28124
      Donald Salzberg MD
      Participant

      Kristina thank you. I never heard that.

    • #28148
      Paul Polidano
      Participant

      Hi All. Once again thank you to all for these blogs which I find are very interesting. For me personally, apart from the fact that almost in my adult life I’ve been very sensitive to smells emanating from certain things, like incense, or cigars (absolutely hate them, as they also trigger a headache) strong perfume and cigarette smoke, ever since I was diagnosed with IPF, I can’t stand the smell of onions being browned when my wife is cooking. Because this always triggers a severe bout of coughing, my poor wife has had to resort to pre-cook the onions in the microwave oven  -despite the fact that this isn’t what is called for in the recipe.

      Is anyone also affected in this manner by the smell of onions being browned off in cooking?

      I’m asking this because my wife doesn’t seem to understand the reason why (browning onions) has become such a problem to me lately.

      Regards to all

       

    • #28170
      Donald Salzberg MD
      Participant

      I think back to my sense of smell changes and they started like 5-6+ years ago (when I was age 60). If related to IPF (I have no other good explanation),  then I may have had IPF a lot longer than i thought (my sense of not feeling well dates back 3 years). It would be interesting to study how many IPF/fibrosis lung disease patients have abnormal/loss of smell. I never read anywhere that this symptom is due to IPF so it never occurred to me to have my lungs checked. It should most definitely be in the differential diagnosis.
      Don Salzberg MD

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