Facial Pain - Empty Nose Syndrome

@nrd1 I appreciate you taking the time to reply. I really can't say that I find any relief or peace of mind in assurances that I can't have ENS since I've never had nasal surgery. Regardless of what label I give it, I share all the same symptoms and life-limiting pain as others in this community describe so at least I know those in this group understand what I'm going through. And honestly, "Empty Nose" perfectly describes the way it feels in my right sinus area. When I breath in I can feel the air flooding into a large empty space and causing pain that is sometimes excruciating and other times just tires me out. I do understand about nerve damage - it was explained to me when I had Bell's Palsey - which is an infection of a cranial nerve. The doctor told me it could take years for it to completely go away and some symptom's never go away.

To answer your questions: Yes I've had sinus problems for over 30 years and they have gotten progressively worse. I'm not and never have been a smoker -- or been around any smokers. I am almost 60 and have suffered from frequent sinus stuffiness and infections since I was in my 20's. I started using decongestant sinus sprays a lot while I was in college. I kept that up for close to a decade until they stopped working -- meaning they no longer relieved congestion and actually caused more pain. I saw an ENT when I was about 28 for chronic sinus infections and he told me I should not use sprays because they could cause permanent damage to my sinuses. (Of course I had already stopped, but it was too late. For another 6 - 8 years I continued with infections, saw doctors when it lasted more than 5 days, took every type of antibiotic they offered and used OTC oral decongestant and pain pills.

Then in my later 30's I notice my sinuses stopped getting blocked up or stuffy when I had a cold. I felt the usual sinus pain & pressure in my face, got fevers sometimes and had a runny nose -- but my nasal passage felt clear and I could breath in and out even while lying down to sleep at night. (At least on my right side. The left still sometimes got partially blocked.) I thought that was good sign - like maybe my sinuses were getting better despite the sinus headaches and facial pain and I could control those symptoms fairly well with Advil or Tylenol. If pain persisted more than 5 days and got worse, I'd see a doctor like I always did. I'd go in with no stuffy nose or cough, just pink cheeks that were warm to the touch and even seemed puffy to me. The doctor usually diagnosed it as "deep sinus infection", prescribed antibiotics and recommended saline sprays and oral decongestants. After some years of seeing me for sinus problems, my primary care doctor referred me to an ENT. This one did a scan and told me that there were no blockages or abnormalities found. He suggested my symptoms could be allergies. So I started taking Claritin (or similar) on a regular basis and that seemed to help at first. Reduced the severity of pain if not the frequency.

By my mid 50's the condition began to impact my day to day life and ability to work. The frequency and severity of my "sinus headaches" increased. They went from a few days once a month, to episodes that lasted 3-4 days at least twice a month. And this unpleasant and painful "empty sinus" sensation started. For a while it was just uncomfortable pain, but it gradually increased to unbearable making the simple act of breathing so painful that I unconsciously stop breathing and find myself gasping for breath. And I began to experience severe sharp pain whenever I breathed in cool air. (I recall this happening when I was kid and went outdoors in 10 degree temperatures.) But now it happens for temperatures below 50 degrees -- and if I stand too close when I open my freezer and accidentally breath in.) The pain and stress associated with it is also triggering migraine-like headaches that send me to bed in a darkened for room for an entire day at a time. I do humidifiers in my bedroom and in my home office space. I drink at least 3 quarts of water a day, and have an insulated tumbler by my bed that I drink at night because I'm doing so much mouth breathing that my tongue & throat get dried out. Needless to say, waking every 90 minutes or so to drink water and then having to use the bathroom a couple times at night means I never feel well rested.

If I can't have ENS because it's a result of surgery-induced nerve damage, then I still have to wonder if the same nerve damage can happen as a result of nasal spray abuse and decades of chronic sinus infections. Either way, I do appreciate being able to tell someone about all this who has had similar chronic pain and understands what I'm going through. Thank you for listening.

I am not a doctor, but there is a possibility that one could experience the symptoms of ENS without having surgery. While it cannon technically be called ENS without surgery, one could develop something called atrophic rhinitis naturally. This can be caused by hormonal changes (reduced estrogen...typically coincides with menopause), anatomy at birth, overuse of corticosteroid based nasal sprays, and probably other factor's as well. Regardless, the result is just as uncomfortable. There are a number of treatment options from most invasive to least: nasal estrogen cream, hyaluronic filler, PRP injections, adipose derived stem cells, and surgical submucosal implants to bulk up and close off the open sensation. Though you don't technically have ENS, an ENS specialist should be able to help you find some relief.

@123d- I am very sorry you are dealing with this.
I think you will find that most people will recommend the same things.
Humidification/Humidifier at night. Any type of moisture you can add into your nasal passages. Oils/Gels. Be careful for things recommended that cause dryness.Stay hydrated.
Contact one of the few honest ENTs in the country who help/assist patients with ENS.
Also important component to this, work with a somatic or biofeedback therapist, who can help with the pain/sleep aspect. Stay active and try to stay positive.

How can I find one of the ENTs you're referring to? I currently have a follow-up with the ENT who did my turbinate reduction, but I'm assuming he's not one of those that you mentioned.

@rachaelmw72 -

What are you experiencing?
How recent was your procedure?

I try to help- but reading the over abundance of people who show up with these same issues almost weekly, it’s really hard to read.

Feeling like I'm not breathing, like my body isnt breathing as much as it should be... And noticing that feeling has thrown me into multiple panic attacks. It almost exclusively starts when I'm in my car, probably because cold dry winter air . And I have my AC on 100% of the time in the car. Before I connected it to ENS, I noticed that a hot shower helped for a bit.

I've had other symptoms too, but I think those were mostly from the panic attacks and anxiety (twitches, lightheadedness, tons of adrenaline, etc).

My turbinate reduction was about 3-4 months ago.

I just ordered a humidifier to hopefully start feeling better, but was hoping to find one of those special ENTs you mentioned so I can get an evaluation with someone who is very familiar with it.

I haven't seen the ENT who did the reduction yet - I just put the pieces together today. I see him next week.

It was radio frequency reduction, nothing else was done.

Before the reduction I had a year and a half of struggling with turbinate hypertrophy after having COVID (tried antihistamines etc). So he said we could do the reduction.

I do still feel the "my brain instead telling my lungs to breath" feeling even though my room is now humid and my nose is a little "stuffier" but maybe it's my obsessive thinking after focusing on it for weeks. I'll still go to my regular doc to eliminate other issues.

Thank you for all the info 🙂

@rachaelmw72-

You’re welcome. I really recommend staying positive. While tempting, try not to Google your symptoms or put yourself in any type of category.

Focus on relaxing. And I have heard of people getting through this with anti anxiety medications in the initial phase to take away the hyper focus and let it fade into the background.

Good luck-and follow what your original surgeon says.