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Thread: Empty Nose Syndrome (ENS) and Nerve Damage

  1. #1
    Bluelighter That-Strange-Guy's Avatar
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    Dec 2009
    In a swirly place where color changes to liquids, sound changes to shapes and the scale of measurement is inside out

    Empty Nose Syndrome (ENS) and Nerve Damage

    I have posted stuff around bluelight several times thinking drugs were destroying my body... Before I start I want you to read a little bit about this rare condition which has changed my life.

    Empty nose syndrome (ENS), also known in research as "the wide nasal cavity syndrome", is a medical term used to describe a nose crippled by over resection of the inferior and/or middle turbinates of the nose. [1]

    Empty nose syndrome is a iatrogenic condition that can and should be completely avoided, except for the rare cases of cancerous tumours in the nasal cavity, in which radical resection of nasal structures may be mandatory.

    Over resection of the inferior or middle turbinates leaves the nose in a chronic state of dryness (lack of mucus/moisture production) and incapable of streamlining, sensing (motion and temperature wise) and processing the inhaled air in a satisfactory manner.

    The main symptoms are - chronic dryness of the nose and pharynx, shortness of breath, upsetting nasal sensations switching between over openness or congestion of the remaining mucosa, difficulty sleeping, difficulty concentrating and a generally depressed and irritated mood.

    The patients feel confusing sensations of too much air entering their nose and pharynx, yet at the same time they feel that they need more nasal resistance to breathe-in satisfactorily. Patients may report that their nose feels un-responsive, too empty and at the same time stuffy, or that although they can sense plenty of air passing through their noses towards their lungs, they feel as if they can't catch their breath and as if their lungs are constantly starved for air. Paradoxically their shortness of breath improves when their nasal mucosa becomes swollen and their nasal resistance increases, like when their nose becomes infected or after drinking a lot of alcohol.

    ENS is a physically, cognitively and emotionally debilitating condition as good nasal functions are crucial for proper lung functions and breathing, cognitive functions, and sense of well-being.


    physical symptoms

    * Nose feels too empty/hollow/absent.
    * Diminished nasal airflow sensation feedback ('paradoxical obstruction').
    * Extreme sensation of dryness of the nasal cavities, with or without crusting.
    * Not enough moisture/mucus production.
    * Dryness of the pharynx, soft palate and back of the tongue ("dry pharyngitis" and "dry laryngitis").
    * Feeling of needing more nasal resistance (or nasal membrane responsiveness) to breathe.
    * Increased pulmonary sensitivity to air-borne irritants, strong scents and cold air. Causes much uneasiness in breathing and sometimes even long-periods (can last hours) of severe shortness of breath, depending on the degree of exposure.
    * Diminished sense of smell and/or taste. Can be confusing - because although there is diminished sense of smell there is also hyper-responsiveness to light and volatile airborne chemicals, fumes and irritants.
    * Difficulty projecting or resonating speech. The voice seems weak and requires some straining to sound loud and articulate well, which causes uneasiness in speech.
    * Feeling weak and depleted of energy.
    * Very poor quality of sleep. Not necessarily full sleep apnea, but shallow and dry breathing, which often switches entirely to mouth breathing only, waking up a lot very dry, with headaches, severe dizziness and very little REM sleep.
    * Relatively dry skin and eyes.

    cognitive symptoms

    * Difficulty concentrating ('aprosexia nasalis').
    * Difficulty performing mental tasks.

    emotional symptoms

    * Marked reduction in sense of self and very crippled sense of well-being.
    * Irritated and/or depressed mood. Often clinical depression.
    * Anxieties.
    * Avoidance of social interactions.

    other characteristic physical symptoms that many ENS patients develop

    * irritating sensation of thick stagnant mucus stuck at the back of the throat. Because of the dryness of the mucosa the mucus propelled to the throat (on the way to the stomach - the nasal mucociliary clearance that occurs in all humans) simply becomes too dry and sticks to the sides of the throat instead of sliding smoothly unfelt.
    * Chronic sinusitis.
    * Worsening of pre surgical nasal symptoms, such as allergic rhinitis, etc'.
    * Epistaxis.
    * Hardly any mucus production, or the opposite – episodes of excessive rhinoreah.
    * Foul smell from nasal cavities.
    * Gastroesophageal reflux (GERD).
    * Elevated levels of blood pressure.
    * Hormonal and metabolic imbalances.
    * Significant weight gain.


    The roles of the turbinates and how their absence causes symptoms of ENS

    The nasal turbinates are elongated bony structures, covered with nasal mucosa, that project off the nasal side walls and stretch across the entire nasal airway. In adults - the inferior turbinate is about the size of an index finger and the middle turbinate is about the size of the small finger. They are the most important mucosal and moisture secreting structures of the nose and they serve to heat regulate (to body temperature), humidify (to 98% humidity), to filter, to pressurize, elevate and streamline the air that flows through the nose. They provide most of the nasal mucosa for the air to flow over and by doing so they act as the radiators, the humidifiers and filters of the nose. The unique air-conditioning and processing conditions that the turbinates supply are not important only for proper lung function but also for keeping the health, function and integrity of the rest of the nasal mucosa, which is essentially the organ-system of the nose, as it covers all the inner nasal chambers and sinus cavities. The turbinates, in particularly the inferior ones, also play a crucial role in protecting the pharynx and larynx from the effect of direct insult of airflow and dryness.

    The turbinates are also heavily innervated with pressure sensing receptors (of the trigeminal cranial nerve) that sense the airflow and thus notify the brain that enough air is traversing the nose to sustain life. If too much of these receptors are gone nasal breathing becomes unsatisfying, even though there is no structural blockage. This is called 'paradoxical obstruction' and is very common in ENS. This lack of airflow sensation causes much distress and morbidity to the sense of well being.

    The turbinates, especially the inferior ones, also provide most of the nasal resistance to the lungs. The lungs need some resistance to allow them to reach their proper inflation and deflation rates during inhalation and exhalation. The nose supplies 50% of the entire resistance to the lungs. The turbinates supply most of these 50%. The function of nasal resistance is poorly researched and understood. It is well known from clinical observation that too little nasal resistance can cause similar pulmonary breathing difficulties and shortness of breath as too much resistance. Healthy nasal breathing is essential for maintaining all aspects of physical and mental health.

    The turbinates also trap more than 75% of the water vapor returning from the lungs upon exhalation and thus help protect the body from dehydration.

    The poorly understood naso-pulmonary reflex may also play a role in causing pulmonary restriction in ENS patients.
    Well here is my story that may have an impact on my life forever....

    From what I remember I first noticed something strange on Christmas night. I had a horrible cold and I took 6 pills of mdma / speed at a party with my friends. Later that night I took a huge hit from a bongzooka and started to cough uncontrollably. I almost blacked out because I could not catch my breath. Just as everything was fading I hauled as hard as I could through my nose in a desperate attempt for oxygen when I felt something abnormal go down my throat...

    Looking in the mirror I was scared, very scared. I could now breathe through one nostril better than I ever could before and the other one was normal. (I was no longer stuffy) Now what happened next is what confuses me, I believe I took a major panic attack thinking I collapsed a lung and it caused my whole body to go numb as if my central nervous system crashed. At this point I could barely stand and I was grabbing onto people screaming for them to call an ambulance because I was dying (they just kept asking if I was on drugs).

    By the next day without sleep I could feel about 70% of my body again but my breathing still felt off... After sitting in the same position until 7pm without speaking I decided to go to the hospital. I had bloodwork, EKG, heart ultrasound, a physical exam and everything checked out fine. Their diagnosis was that it was just anxiety and I cleared a blockage on one side. (I trusted them, after all they are a doctor)

    I went home and continued to eagerly clear the other 'blockage' I kept blowing my nose as hard as I could and sniffing. By the third day I did it. Now both sides were breathing the same, but once again I swallowed something odd, and the same panic attack / out of body feeling happened. While in this state I could not feel pain, but I could feel there was something in my nose so I kept picking at it until I could feel my body again.

    The following day I felt somewhat better.. Able to live my life I guess. And i continued on not thinking. My nose did get very dry but I just blew it and continued on.

    5 days ago, on June 13th was the most recent. I was out with my friends kicking around a soccer ball for amusement when all of a sudden I felt an awkward sensation in my leg, soon the same lump went down my throat again, followed by another loss of central nervous system. Okay this was enough... I waited until I got feeling again which was after I woke up the next day. Certain parts of my body were still numb, I still can not feel muscle tension in my legs, nor other random areas in my body. I can not tell if I have to use the washroom, nor when I am hungry, my balance and co-ordination is off, and my concentration is severely depleted.

    This is when I finally decided to look up my nostrils in the mirror, and I was very disturbed to find on the right hand side it is completely hollow, and on the left there is only a tiny bit of the lateral walls that used to once exist there. My heart dropped in my stomach and I decided to go to the doctor.
    So.... I went back to the hospital again, I seen a neurologist who said it was extreme anxiety. I told him about my nose thing and without looking he said "It is physically impossible for your nose to fall apart on the inside."

    I went home wanting to believe him but I started doing more and more research and it lead me to a website. Apparently ENS is a very rare and complicated disorder, and only a handful of surgeons will even touch these matters. This is really effecting me and my life, I have barely even move from my bedroom unless my friends drag me outside, or unless I go to work (I now lost my job due to not being able to concentrate) I am calling my family doctor today and explaining my situation, and I will try to convince him that ENS does exist and i'm living proof. Its scary when I look up my nose and I can see inside for what looks like forever into the blackness. I really hope he believes me and I can get reconstructive surgery.

    I have suffered from january till june not understanding my condition, nor the dangers of it. I am reading as much as possible from that site but my family thinks i'm crazy. I am not even excited about graduation next week. Nor my grad party in 8 days... I just want to get better and live normally again..

    Most of all I really hope I can recover from the nerve damage, even if it's just my legs... I feel so useless and I would gladly welcome death if I have to live the rest of my life like this. It is painful and uncomfortable beyond belief and I am forced to live day after day feeling like an alien struggling to survive another 24 hours.
    Last edited by That-Strange-Guy; 18-06-2010 at 17:11.

  2. #2
    Join Date
    Mar 2010
    a little cutty cove on the Northern Pacific
    i wont chew you out like some do but please read the forum guide lines before posting:

    I have posted stuff around bluelight several times thinking drugs were destroying my body... Before I start I want you to read a little bit about this rare condition which has changed my life.
    this is known as cross posting and for some of us who actualy atempt to read through and respond to some of the issues this just makes more threads to shift through.

    i think this would go better in the dark side...

  3. #3
    First off, your life is beyond valuable. You're just in a dark place at this moment in your life. Your future is not set in place yet. You're setting an appointment to see a doctor. That's a positive step in the right direction.

    If a doctor checks your nasal passage and doesn't find anything, you'll know its psychological and can begin to treat it.

    If a doctor checks your nasal passage and finds that what you believe is wrong is actually wrong, you can begin to treat that as well.

    Either way you'll know what actions you can start taken to lessen the symptoms you're experiencing. Don't leave the doctors office without a thorough examination of your nasal cavities. Insist, calmly and maturely, that it be done before you leave. You need some assurance that a trained professional has taken the time to investigate your concerns.

    I wish you the best.

    Good luck and God bless.

  4. #4
    It sounds like you are going through a tough time right now. Don't let it beat you. I wish you the best for the future. Continue to pursue this with a doctor until you are being treated. Good luck.

  5. #5
    Join Date
    Mar 2008
    Los Angeles California Where its hot baby!
    Just tell me one thing. Do you smoke weed? Your reminding me of some of the dark and haunted places that I was in when I was a teenager. Its this horrific nightmare that I experienced. My friend has literally picked a whole in his nose. Its a pain in the ass for him, yes, but he is surviving. My other friend was born with a cleft lip and palette and has undergone like 20 surgeries. He also has managed. Stop obsessing over one thing in your life. Fear has got you by the balls, and I know the feeling all too well. Fear Fear Fear Fear. Let it out my friend.

  6. #6
    Bluelight Crew Bearlove's Avatar
    Join Date
    Jan 2009
    Wow this sounds like scary stuff - had you looked up your nose prior to this event? Do you know that there is a physical change? Have you broken your nose before or hit it really hard when playing sports etc (my nose looks like you describe)

    You don’t portray or mention any of the side effects of the ENS that you say you have so how are your drawing the conclusion that’s what you have? Online self diagnosis when your stressed out about something can lead you to grasp at straws and can cause you more stress than necessary.

    Prior to this party - your obviously using a lot of pills and your using speed. How do you take your drugs? IF you are snorting and have/had been for a long time then its possible you have/had damaged the lining of your nose (had you noticed a stuffy feeling often accompanied with blood in your mucus?). When I was using heavily (and snorting) I once had a very similar experience where I couldn’t breath properly up my nose – I was blowing and sniffing really hard to try and get rid of what was blocking my nostril (thinking it was some huge snot). Now when I sniffed really hard (and this sounds pretty bad) I felt something shift from the back of my nose that felt ‘wrong’. This did the trick but it left me feeling wtf have I done to myself - I know (after inspection of this ‘thing’) that it was similar to a scab that forms over any sore on your body.

    Now I’m not saying this is what happened to you but the sniffing really hard and getting a lump of something and being left with a really clear nostril does sound similar? The panic attacks / anxiety is another thing and could be down to you taking a lot of drugs (6pills and speed etc) and trying to find out what is wrong with you on the internet.

  7. #7
    You need to see an ear, nose, and throat doctor to get an independent confirmation of your disease rather than self-diagnosing. Only when you know your actual diagnosis can you begin treatment which is the next logical step.

  8. #8
    How have you been?

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