Facial Pain - Empty Nose Syndrome

Posted by Bellatrac @bellatrac, Nov 9, 2011

Looking to discuss coping mechanisms/treatment options for atypical facial pain/empty nose syndrome - mine is a result of sinus surgery

Interested in more discussions like this? Go to the Ear, Nose & Throat (ENT) Support Group.

@chris77- Hi. If this came about after a sneeze and no other trauma to that area like a surgery or accident, I would rest easy their first. I am not sure how much the ENT explained to you about the nasal anatomy. They will typically follow their own algorithm, which is all they have as they are surgeons first and foremost and don’t put much energy into much else unless you appear to be a person interested in surgery.
The nasal cavity is richly innervated with nerves. These nerves along with the structure/airway of our nose allows us to sense/feel air coming through the air channels.
The mucosa in the nose warms/humidifies the air as it comes in when it is properly flowing. There is also a strong nerve in the very back of nose by the nasopharyngeal area. The powerful sneeze could have thrown shifted some of the structure responsible for airflow sensation. There are 3 bones lined with mucosa tissue in your nose on each side. These bones(organs) allow for the smooth transition of air in and out of nose. They also protect the air from shooting straight back to your throat which could be the cause of the perforated feeling you are feeling. The nasal septum also plays a role in the air channel. This shift could have happened with a sneeze. To just alter your airflow by a mm to cm. ENTs are really only helpful for someone with “blocked” airflow. They will see it as something they can cut and remove to make better. If nothing was seen on endoscopy or CT, I would be very cautious of an ENT just wanting to do exploratory surgery. They will only remove things, which only opens air channels more. Which doesn’t sound like what you need. It sounds like you are experiencing more openness on one side now which can cause a drying like feeling or affect.
Have you tried Hunidification/Moisturizing the nose.
This has obviously been very stressful for you and often when we focus on a sensation in our body it will intensify.
Rather than just focusing on that one area, which is what Western Medicine will have you do. I would suggest a body worker/chiropractor who has a more holistic approach. A violent cough can shift things and perhaps he can help you get back into homeostasis. Perhaps your nose may not even be the root cause, but a byproduct of what occurred. The entire body is connected. A violent cough can effect the upper ribs, clavicle, which can then alter the way you breathe in and out and make you think it is your nose. These are just thoughts/suggestions. But I do want to bring peace of mind to calm yourself, that if this did start after a cough, which is a normal accurate in the body, I would be leery of any doctor offering you surgery.
Again, just opinion and thoughts. Remind yourself that the whole body is a functioning system. It could be something very simple that has been overlooked.

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@chris77-also I forgot to ask, did whomever put you on the Antibiotics and Omeprazole. I’m assuming this was the only other idea the ENT had besides surgery? Thinking your breathing issue could be an infection? Thinking the throat swallowing could be reflux? I encourage you to not give up hope if these have not “worked. ENTs over/mis prescribe these meds quite a bit, leading you to think you have real problem if they don’t work, when they never would have worked because they are not addressing the problem. Physical stress, external temperature and environmental changes can all affect the nose. ENTs go straight to antibiotics every time.
I would focus on calming/clearing your system as this sounds like your nervous system has now been heightened because of this. I will also add that often times when something (non life threatening) happens to the body, it can take us from being present an outward and totally turn inward focusing on nothing but that. This leads to multiple doctor appts, an raises anxiety when nothing is found. This then leaves to continued pursuing to solve the problem. If you are repeatedly meeting with doctors eventually one will try to fix/solve you which ultimately ends up with unneeded medications and surgeries, causing more/new issues. The more inward we are on a symptom, the less it has the opportunity to fade in the background. While I am not minimizing what you are feeling, I am wondering what could happen if you treated this in reverse. If you could start by telling yourself, you woke up after a disturbing sneeze and felt different, however you and your body are still safe. If you could work with someone who understand the way somatization works, perhaps they could help you get the volume turned down on what you are feeling. Lack of restful sleep wreaks havoc on the nervous system as well. I can not reiterate enough how powerful the mind is when it comes to feelings with in the body. You have an area that is drawing all of your attention to it. And has made you feel like you do not have control over it. I want to reiterate, I am not minimizing any of what you are feeling, however the hyper awareness doctor visits, tests and unhelpful medications are reinforces to the way you are feeling. This may sound to in depth. But what you are going through is very common, unfortunately when it comes to the body.

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<p>Empty Nose Syndrome</p><p>Good morning everyone has anyone with ENS have any relief the symptoms I’m experiencing are awful any help is appreciated ty</p>

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@123d

<p>Empty Nose Syndrome</p><p>Good morning everyone has anyone with ENS have any relief the symptoms I’m experiencing are awful any help is appreciated ty</p>

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Also I was never told when I had surgery that everything in my nose was removed anyone experience the same ty

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@123d

<p>Empty Nose Syndrome</p><p>Good morning everyone has anyone with ENS have any relief the symptoms I’m experiencing are awful any help is appreciated ty</p>

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@123d You are experiencing awful symptoms from empty nose syndrome and you looking to connect with members that can suggestion relief.

You will notice that I moved your question to a discussion where members like @chris77 @nrd1 @marychickadee @drumline7860 are already discussion empty nose syndrome. If you haven't done so already you may wish to scroll through the previous posts and look for relevant information and to find additional members to connect with.

May I ask how long ago you had surgery?

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@erikas

@123d You are experiencing awful symptoms from empty nose syndrome and you looking to connect with members that can suggestion relief.

You will notice that I moved your question to a discussion where members like @chris77 @nrd1 @marychickadee @drumline7860 are already discussion empty nose syndrome. If you haven't done so already you may wish to scroll through the previous posts and look for relevant information and to find additional members to connect with.

May I ask how long ago you had surgery?

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@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.

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@erikas

@123d You are experiencing awful symptoms from empty nose syndrome and you looking to connect with members that can suggestion relief.

You will notice that I moved your question to a discussion where members like @chris77 @nrd1 @marychickadee @drumline7860 are already discussion empty nose syndrome. If you haven't done so already you may wish to scroll through the previous posts and look for relevant information and to find additional members to connect with.

May I ask how long ago you had surgery?

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Surgery was June 2018 and I complained about the symptoms to my ENT on all my follow up appointments.He just kept saying it takes time. I found out this past December I have ens by a different ent. Ty for responding

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@nrd1

@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.

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Thank you I appreciate you getting in touch with me

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Hello. I stumbled upon this page while searching the web for help with chronic sinus pain. I have the symptoms of ENS but I have never had surgery on sinuses or Turbinates. I am writing here to ask if it's possible to have ENS without ever having surgery? I have had symptoms like the ones I've read about on this group for thirty years and they are getting worse. I've also tried all the treatments I see talked about: a humidifier at night and saline nasal sprays throughout the day and night. I stuff moistened wads of toilet paper inside my right nostril to stop air flow because the pain caused by air going through is more than I can take. The right side of my face around the eye, nose and lips feel tingling and numb most of the time - it feels like when Novocain is wearing off from a dental procedure. (I had Bell's Palsy about 7 years ago on that side of my face - so this could be residual effects of that.) But the biggest issue is that breathing through my right nostril is excruciating and the accompanying headache is debilitating. When it's severe I cannot drive or leave the house. The pain is accompanied by nausea, intestinal distress and occasional dry heaves as well. Recently I've experience night sweats and then chills. (At first, I thought I might have the humidifier set too high but it's on the lowest setting.) Still I wake up with pain in my sinus area and a headache every day. I've taken so much OTC pain medication that my stomach is upset and painful too. If I can't find some way to eliminated or even manage the pain I'm afraid I'll lose my job. Not to mention that I can't live a normal life or make any plans to do anything for fear I'll be incapacitated with pain on any given day.

I saw a Youtube video of Megan Kelly on the Today show (2018) talking about ENS. A Dr. Subinoy Das was on the show and talked about regenerative tissue therapy for this condition. Has anyone had experience with that? If anyone has any information on a permanent solution for this, I would be so grateful if for any suggestions to offer me some hope.

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@denisec526

Hello. I stumbled upon this page while searching the web for help with chronic sinus pain. I have the symptoms of ENS but I have never had surgery on sinuses or Turbinates. I am writing here to ask if it's possible to have ENS without ever having surgery? I have had symptoms like the ones I've read about on this group for thirty years and they are getting worse. I've also tried all the treatments I see talked about: a humidifier at night and saline nasal sprays throughout the day and night. I stuff moistened wads of toilet paper inside my right nostril to stop air flow because the pain caused by air going through is more than I can take. The right side of my face around the eye, nose and lips feel tingling and numb most of the time - it feels like when Novocain is wearing off from a dental procedure. (I had Bell's Palsy about 7 years ago on that side of my face - so this could be residual effects of that.) But the biggest issue is that breathing through my right nostril is excruciating and the accompanying headache is debilitating. When it's severe I cannot drive or leave the house. The pain is accompanied by nausea, intestinal distress and occasional dry heaves as well. Recently I've experience night sweats and then chills. (At first, I thought I might have the humidifier set too high but it's on the lowest setting.) Still I wake up with pain in my sinus area and a headache every day. I've taken so much OTC pain medication that my stomach is upset and painful too. If I can't find some way to eliminated or even manage the pain I'm afraid I'll lose my job. Not to mention that I can't live a normal life or make any plans to do anything for fear I'll be incapacitated with pain on any given day.

I saw a Youtube video of Megan Kelly on the Today show (2018) talking about ENS. A Dr. Subinoy Das was on the show and talked about regenerative tissue therapy for this condition. Has anyone had experience with that? If anyone has any information on a permanent solution for this, I would be so grateful if for any suggestions to offer me some hope.

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@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.

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