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) group.

Good day everyone I really hope to find a solution here.Two years ago while sleeping I had a violent sneeze and when I woke up the following morning I noticed my breathing had changed.i observed My left Nostril Was taking In too much air And it seems I have a perforations/opening somewhere inside my throat(leftside) Which I feel was due to the force of the sneeze.Now I always feel like I have excess air inside of me and it causes me to feel like am choking and my chest is filled with trapped air(so uncomfortable).I can’t speak for 60seconds without gasping for breath and this has affected my life terribly I am no longer happy and sometimes I honestly feel like ending things.The condition is getting worse as I can no longer eat properly,my throat Just doesn’t open well enough.i have had the following scan and nothing was found:
.Ct scan of nose and paranasal sinuses
.barium swallow
.nasal endoscopy
For two years I have been on Antibiotics,omeprazole and sometimes sedatives to help me sleep.I really hope to find a solution here so I can get on with my life again.God bless

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@chris77

Good day everyone I really hope to find a solution here.Two years ago while sleeping I had a violent sneeze and when I woke up the following morning I noticed my breathing had changed.i observed My left Nostril Was taking In too much air And it seems I have a perforations/opening somewhere inside my throat(leftside) Which I feel was due to the force of the sneeze.Now I always feel like I have excess air inside of me and it causes me to feel like am choking and my chest is filled with trapped air(so uncomfortable).I can’t speak for 60seconds without gasping for breath and this has affected my life terribly I am no longer happy and sometimes I honestly feel like ending things.The condition is getting worse as I can no longer eat properly,my throat Just doesn’t open well enough.i have had the following scan and nothing was found:
.Ct scan of nose and paranasal sinuses
.barium swallow
.nasal endoscopy
For two years I have been on Antibiotics,omeprazole and sometimes sedatives to help me sleep.I really hope to find a solution here so I can get on with my life again.God bless

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Hello @chris77 and welcome to Mayo Connect. As you know, Mayo Connect cannot offer medical advice as we are not medical professionals. We are patients, like yourself, who give and receive support and encouragement.

This problem with breathing and choking sounds very uncomfortable, I'm so sorry that you are experiencing this. I have some swallowing issues that can cause a choking sensation and breathing/speech problems so I do understand just a little of the panic that you must feel when this occurs.

Just to help understand this problem a bit better and see if I can connect you with others with a similar situation, could you tell me if you have any swallowing or speech problems? What type of specialists have you seen? Have you ever seen a Gastroenterologist for an EGD?

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@hopeful33250

Hello @chris77 and welcome to Mayo Connect. As you know, Mayo Connect cannot offer medical advice as we are not medical professionals. We are patients, like yourself, who give and receive support and encouragement.

This problem with breathing and choking sounds very uncomfortable, I'm so sorry that you are experiencing this. I have some swallowing issues that can cause a choking sensation and breathing/speech problems so I do understand just a little of the panic that you must feel when this occurs.

Just to help understand this problem a bit better and see if I can connect you with others with a similar situation, could you tell me if you have any swallowing or speech problems? What type of specialists have you seen? Have you ever seen a Gastroenterologist for an EGD?

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I have difficulty swallowing now but initially it was just my breathing,like I could no longer feel the sense of fresh air(inhalation).but over a period of time it got worse.Now I can’t eat Nuts or certain meals unless I chew them to very liquid form and when it does go through It doesn’t digest properly.Most times I can’t tell if it’s the Excess air or food That goes through a wrong channel and gets stucked inbetween my chest and the pressure from it strains my back a lot.
My speech is Still normal in tone but no longer strong.When I try to sing a pitch my voice drops almost immediately and gets shakky.it actually got worse after I was put on a nebulizer and i felt a strong crack which made me wobble for long.i can’t talk for too long else I will feel very tired.
Am currently seeing an Ent doctor but nothing much is changing.over two years now.sory about your swallowing I hope you get better soonest.

REPLY
@hopeful33250

Hello @chris77 and welcome to Mayo Connect. As you know, Mayo Connect cannot offer medical advice as we are not medical professionals. We are patients, like yourself, who give and receive support and encouragement.

This problem with breathing and choking sounds very uncomfortable, I'm so sorry that you are experiencing this. I have some swallowing issues that can cause a choking sensation and breathing/speech problems so I do understand just a little of the panic that you must feel when this occurs.

Just to help understand this problem a bit better and see if I can connect you with others with a similar situation, could you tell me if you have any swallowing or speech problems? What type of specialists have you seen? Have you ever seen a Gastroenterologist for an EGD?

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I also met an Ent professor(a Surgeon)but he advised I go for Surgery.He said that way he can physically ascertain what my situation is like Since the scan showed nothing significant

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@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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Empty Nose Syndrome

Good morning everyone has anyone with ENS have any relief the symptoms I’m experiencing are awful any help is appreciated ty

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@123d

Empty Nose Syndrome

Good morning everyone has anyone with ENS have any relief the symptoms I’m experiencing are awful any help is appreciated ty

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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

Empty Nose Syndrome

Good morning everyone has anyone with ENS have any relief the symptoms I’m experiencing are awful any help is appreciated ty

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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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