r/nonallergicrhinitis

Disclaimer: This is my experience and it is not advice to get any procedures done, they come with risks so please do proper research into them.

I have had chronic rhinitis for 5 years. It gradually worsened over that course and eventually consumed a lot of my life. I had negative allergy tests and minimal benefit from Dymista. Ultimately I fell into a decongestant dependency cycle of fluctuating use.

My symptoms:

Nasal blockage: Could be dry or wet, always worse in the evenings.

Rhinorrhea: Runny nose, triggered by eating, outdoors, cold, exercise.

Sleep disturbance: Minor for most of my years of symptoms but got worse towards the pre surgery period.

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What did I try?

Nasal steroids, azelastine and Dymista: Helped to dry out the nose but rarely helped with blockage.

Nasal saline irrigation: Twice a day, moderate benefit for a few hours to rhinorrhea and blockage but again not significant relief.

Capsinol: Nasal capsaicin spray -do not try to make your own - this was medical grade from a company in Europe. No benefit here, very painful.

Breathe right nose strips extra strength: Significant benefit to the point I was wearing them 24/7.

Oral pseudoephedrine: Minor benefit and concerning systemic side effects, meant to be harmful for blood pressure. A few times a week these gave me moderate relief for a few hours but quickly build a tolerance with overuse and officially not meant for long term use.

Nasal decongestants - Instant relief but the long term dependency and potential turbinate hypertrophy means avoid where possible. I had a dependency that I tried to keep minimal but was probably 1-2 sprays per night for a few years and then escalated towards my surgery decision.

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Surgeries: Technically 3 procedures in one operation.

Turbinoplasty : Partial reduction to the inferior turbinates.

Posterior nasal nerve neuronectomy: The posterior nasal nerve drives some of the rhinorrhea so cutting it should theoretically stop this, a mesh is then placed to stop the nerve regrowing. This is like the cryofreezing procedures that are available but supposedly with more sustained benefits.

Septoplasty: My septum had only a minor deviation and this was corrected.

I paid £10,000 for this at a hospital in the UK. Feel free to message me for details of the hospital.

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After the operation I had to have stents in my nose for 1 week.

Post op recovery:

Pain was minimal, a little sore over first week but completely manageable without pain relief.

Dripping nose bleed (minor bleeding) for first few days required the nose to be covered with tissue.

Sleep: Horrible for the first week due to the stents, absolutely no airflow through the nose.

Once stents were out:

Resumed saline nasal irrigation twice a day.

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Week 1-4: These were terrible for me with near complete congestion. A very difficult month. No bleeding or pain.

Week 4-6: Finally light at the end of the tunnel. I reached the point I was at pre-surgery with occasional patency, able to eat food without gasping for breath.

Week 6-8: Significant improvements, I began sleeping with no congestion and going all morning without congestion. The evenings were still a bit blocked.

Week 8-12: Reaching a new baseline. I continued nasal irrigation (maybe a bit out of habit). I had no congestion for most of the day and maybe one episode of congestion each day in the evening and that was it.

Week 12 onwards: Stopped the nasal irrigation and no extra congestion, really happy about this.

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So what’s my new baseline?

No congestion is my new normal but I do get maybe one episode in the afternoon or evening where I get congested, blow my nose a bit and after 20 mins I’m back to clear. Occasionally I’ll be breathing through my nose and can feel it’s a little bit clogged but I can still breathe through it. Ultimately my nose does not bother me for most of the day.

The rhinorrhea has cleared up moderately, now when I’m going on runs, cycling, walks, I will still blow my nose a bit but only a small amount of mucous comes out and it quickly goes back to being clear. This might worsen in winter with colder air so we shall see.

So new baseline:

Occasional minor congestion, occasional minor rhinorrhea.

Not as good as someone with no nose problems, I still carry tissues everywhere and blow my nose multiple times a day but it is a sure lot better than it was!

I now live without thinking about my nose at all in the day, no more nose strips.

I still keep azelastine to use occasionally but it’s probably psychological and I might lock it away and see how I do.

There is lots of talk about empty nose syndrome on the sub and my ENT was aware of it, it’s worth discussing this with your own ENT as it’s complicated. I can’t remember the exact conversation we had but I came away happy on the risk/benefit balance for the procedures given how life limiting my symptoms were. I’ve not had any problems with nasal airflow/ ENS-type symptoms at all post-op but again this is not medical advice and please have your own discussions with an ENT.

TLDR:

Partial inferior turbinate reduction, posterior nasal nerve neuronectomy, minor septoplasty.

Tough recovery period but ultimately successful surgeries with a significant reduction in symptom burden.

I still have rhinitis symptoms but they are much improved.

I’m sorry if I’m not posting in the right place but I’ve seen several similar posts here and figured id reach out as none really seen to be like mine. I have no congestión and I haven’t been diagnosed with a sinus infection. I had a mild cold without much congestión a few weeks ago. During the height of the cold, i noticed when i inhaled sharply through my nose, a distinct onion smell was present in my left nostril only. A week later, it turned into the smell of rotting vegetables or meat but only when i either inhaled or bent down. A post nasal drip started shortly there after. I can’t “taste” it, but it feels sour, and I have had a decreased appetite since. No one else can smell it and it apparently hasn’t impacted my breath.

It’s now been about two weeks. The smell/drip not constant, and in fact I thought it was gone yesterday until i laid down for bed and the drip and smell started again. When i woke up this morning, i felt a cold sensation in my left nose and have had intermittent sneezing and tingling today as well as some light popping with movement.

I have zero congestión and the smell is only in my left nostril. It feels very high up in my nose as my nose isn’t even running and the dripping is only in my throat. I used a saline flush once a few days ago when the smell was at its most intense but it didn’t seem to change anything as I could still smell it right afterward. I am worried i have an infection. My doctor was dismissive and said it I was side effect of cold that would go away. Waiting on appointment with ent in a few weeks, but in the meantime wondering if anyone knows why I would have this with no other symptoms.

The last sinus infection I had was 15 years ago, and it was bad and lasted for months with thick mucus coming out of my eyes and nose. But I haven’t had one since nor have I had major problems with congestión. I do wake up a few times a month for the past few years with a headache in my left temple going to the back of my head occasionally when I sleep too long, or when I’m dehydrated. I didn’t make any connection, but woke up with one of those this morning so thought it could be. Lastly, I did take a Covid test when I was sick. My husband insists it’s dangerous to use the cutip swabs for those tests at home and thinks that’s why i have this. I am a bit dismissive of that myself, but thought it was worth mentioning.

Any help is greatly appreciated this is so gross and I don’t want it to turn into anything else

I've suffered from vasomotor rhinitis for a long time, and my main problem is nighttime nasal congestion, but I've never suffered from rhinorrhea.

I've used many nasal sprays without success, and recently I heard about the benefits of capsaicin (the active ingredient in chili pepper) because it desensitizes the nerve receptors in the mucosa. I don't live in the Netherlands, where outpatient capsaicin treatment is available, so I can only purchase Capsinol nasal spray (which, however, has a lower capsaicin content than the one used in outpatient treatment).

Capsinol is sold in three formulations (Mild, Original Formula, and Extra Strong), and I decided to try the Original Formula.

I've read in reviews that some users have experienced real benefits, while others have not. The burning sensation is a (temporary) side effect, confirmed by everyone.

I started the treatment a few days ago, but surprisingly, I haven't had any burning sensation. I also haven't seen any improvement in my nighttime nasal congestion. This could be because my nasal congestion is very severe and the capsaicin can't reach the nerve receptors. To solve this problem, yesterday I used a hypertonic solution (combined with hyaluronic acid) 30 minutes before my last daily use of Capsinol (the evening before bed), and I experienced burning and slight tearing. Perhaps this means the capsaicin is now able to act on the nasal mucosa.

The manual states, "Spray 2 to 4 times in each nostril, up to 5 times per day, evenly spaced throughout the day. You will usually notice an effect within 2 to 12 minutes. Many users notice a difference from the first use. For some, it takes up to 2 weeks of consistent daily use before they experience the full effect."

So before concluding that Capsinol isn't right for me, I still have to wait, and I could also try the Extra Strength version.

I'd like to hear comments from other users who have used Capsinol for non-allergic rhinitis, including information on the duration of treatment (and any periodic cycles), dosage, version used, presence of burning sensation, combination with a hypertonic solution, etc.

I'm looking for an ENT office urgently (not hospital) somewhere in the NYC/Newark/Jersey City metro area. Unfortunately, no one provides the cost for this procedure on the phone. It's like a cat in the bag that is not okay since I'm gonna use the self-pay method.

The procedure name: RFTR (Radiofrequency Turbinate Reduction)
Procedure code: 30802

Does it cost ~$2000 or ~$5000 or ~10000?
If you had that before or know for sure, please share your experience. DM also works if don't want to share it in the post. Even this info is valuable enough for my next moves.

Thank you

UPD. I need to request the Good Faith Estimate before scheduling my very first appointment.

Has anyone tried prednisone? I remembered that couple years ago i was given a prednisone course when i had sinus issues post COVID and it did the trick. So wondering if its something that can also be generally used for rhinitis where regular sprays have all failed.

If anyone did have any success with it, what dose did you take?  Thank you!

So actually when I stopped vaping and smoking, I was getting recurrent colds, and then I got a sinus infection. Also, at that time, I think I had acid reflux. After some time, this turned into chronic nasal blockage for me, and later I found out it was due to a very mild deviated septum and turbinate hypertrophy.

I don't think I have allergies, and the only problems I had were nasal blockage and headaches/heaviness due to inflammation in my nose and nasal passages (my sinuses were clear). So I don't know what caused the turbinates to grow. Was it non-allergic rhinitis (I don't have allergies), or was it the smoking, recurrent colds, sinus infection, and acid reflux?

If I get surgery, would I need a revision surgery later, or would I still get the headaches?