@denisec526-Hi. I’m very sorry to hear you are/have been experiencing this feeling for so long.
-Has it been a slow progression over time of the 30 years?
-Do not lose hope. In fact to provide you with hope and to calm your anxiety, know that you would not have “ENS” if you have never had surgery. However when we are under distress it is easy to google symptoms and read the worst case scenario.
To put your mind at ease, you could schedule a 30 min phone consult with Dr. Das. He is kind and spends time explaining/answering questions.
The nasal cavity is so complex and gets its communication from the parasympathetic nervous system. The nervous system plays a key role in hyper responsiveness in the nasal cavity, sometimes causing what normally wouldn’t be a painful stimuli to be perceived as painful.
Have you seen someone to look into your nasal cavity and health of your nasal mucosa? To see if this could be an airflow issue causing the burning feeling?
Dry nasal mucosa can cause a lot of irritation to the nerves. I know you said you’ve tried all the recommendations and have found no relief. Are you a smoker or around anyone who smokes? What is your daily environmental climate like? Do you stay hydrated? Those are all questions an ENT would ask.
You also mentioned Bells Palsey, I’m not sure what the cause of it was. I’m assuming you now have an understanding of cranial nerves. Those same cranial
nerves also innervate the nasal cavity and can easily be activated. Have you talked to the Neurologist about the burning pain you are having in the nose?
A good Neuro can explain how all of the nerves get overly activated.
In the mean time while you are trying to find relief, I recommend anything that can reduce nerve inflammation. Healthy diet, hydration, sleep, and stress reduction activities.
@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.