Where did my snot go? Atropic Rhinitus mystery case
I’m 33 years old from the midwestern area of the USA. *I have not had any turbinate reduction or any surgery whatsoever.*
2 months ago I woke up in the middle of my sleep from a lack of air resistance in my nose. My sensation went back and forth from normal to bad for about 4 days. One day my breathing sensation completely went away. Of course I look to google scrambling for information on “too much air” and “no nose resistance when breathing” etc. it led me to the symptom of Empty nose syndrome.
So 2 weeks go by with absolutely 0 sensation of nose breathing. Impossible to sleep, hard to put together a sentence due to “forgetting” how with this new sensation. Even hard to walk without hyperventilating. About a week into this I went to my dr who prescribed anxiety pills (Buspar) and topical gel for inside of the nose (Mupricin). They check my oxygen and it’s 98%.
After 2 weeks of this – I had a pop in my ear and a little phlegm production. OMG- did my body/ nose just fix itself?? Well no, because the normal breathing sensation lasted for about 2 hours and went away to completely nothing.
Another week goes by with these ups and downs. All of a sudden I notice my “baseline” breathing is about 25% of normal. I’m not always suffering and have a *glimpse* of nose resistance. And randomly- I have small periods of “normalcy” aka phlegm production, moisture in nose, buggers, swelling of turbinates. I’ve seen 2 separate ENTs at 2 separate hospitals (one of the top ent in the nation) They both said turbinates are there and that mucus is also there. Things look normal but maybe dry. I was sent to a rheumatologist to check for sjegeons syndrome. Had 19 blood tests, urine, and lung x Ray. Things look normal. I had high celiacs and 160 speckled ANA.
I’ve got a ct scan tomorrow. I had a phone consult with a highly respected ENT/ENS doctor. He mentioned due to my alopecia barbae and high ANA blood test that he believes auto immune may be eating at my mucosa glands/cells.
I’ve suffered and still am for the most part with breathing/anxiety/depression/sleep sensations due to this. Things are slightly getting better I think. But occasionally my nose will go back to being “completely open” without any resistance.
The only thing I can pinpoint with this whole thing is I have ALWAYS had non-allergic rhinitis my entire life (phlegm, post nasal drip, etc.) and all of a sudden one day it changes to completely dry! I don’t know if it’s mucusa damage, or just my body getting used to not having moisture/allergies. I could take a decongestant when sick and never get dry and have ENS symptoms at all. Whatever it is, it’s not normal. It’s hard/impossible to lead a normal life. Hoping that something “switches” in my body soon, or that a Dr. can not just automatically assume it’s in my head and prescribe pills (which I am not taking)
The only things that are helping are:
Ayrgel in nose
Going for walks (when breathing feels good)
Talking with friends/family.
Thanks for listening. Hoping that there are some others out there with some ideas. If you have made it this far, congratulations 😬 feel free to comment or message me if you have any ideas/insight/advice!