Letter From a Suicidal ENS Friend

I was operated on and permanently injured by an ENT. I was naive and trusted him not to hurt me. He froze, cut, and resected two vital organs in my nasal cavity called inferior turbinates. My ENT destroyed these organs to the point where they no longer function. As a result, I now average 3-4 hours a night for the last 6 years.  I feel like I am suffocating 24/7. I no longer produce mucous to humidify the air for my lungs.  I have chronic anxiety, depression and a complete loss of well-being.  I cannot focus or concentrate.  My condition has progressed to a point where I am completely disabled.  Despite my efforts, there is not a cure for my condition.

Before this happened, I never even heard of turbinates. They are the key organs in the nasal cavity, shaped like small fingers. Their functionality is necessary to well-being and a good quality of life. They perform many functions, including humidifying, heating and cooling the air for the lungs. They are rich with neurons that send signals to the brain regarding gas exchange, information about sleep, and provide well-being. As a result, I have a crippled nose, sinuses and nasal cavity, that do not produce mucus, do not sense airflow, and do not function. I have severe maxillary nerve damage as well.  The nerves that line what is left on my mucosa are damaged so I feel like I am suffocating 24/7.   My subconscious mind cannot sleep through the suffocation. As a result, I sleep a few hours a night and never feel refreshed.  When I am awake, I experience what only can be described as torture. My anxiety and level of well-being are terrible. Humans are hard-wired to experience anxiety when they feel like they are suffocating.  All of the pleasurable sensations that come with breathing are absent.  My sinuses are dry.  The quality of my life is gone.

I saw Dr. Steven Houser in Jan of ‘09.  He diagnosed me with ENS. The condition is nicknamed Empty Nose Syndrome because, when you look at a CT scan, the nasal cavity appears empty. This silly-sounding condition is chronically debilitating. Dr. Houser mentioned it was a potential suicide condition. There have been numerous suicides due to ENS, as documented by Dr. Eugene Kern, formerly from the Mayo Clinic. My good friend, John, with whom I spoke every day for a year, had ENS and ultimately took his life a few years ago. I realized I was having suicidal thoughts because the symptoms exceeded my ability to cope with the condition. I had a friend in college who took his life. I remember thinking to myself–what could be that bad that he would go to that extreme?  I did not understand it then, but I understand it now. I hate that option. I want to live. I do not want to take my life anymore then the next guy. I do not agree with suicide on principle. It is a terrible legacy to leave my children. They need me as a father. So I have been fighting the urge for many years. However, I feel I have no hope and things are not improving, but rather getting worse. I am not sleeping hardly at all, and my mental anguish and anxiety are terrible. Years of sleeping just 3 hours a night, and the complete loss of well-being, and the torture ENS brought to my life have become unbearable.

One thing that makes it tough is there is no escape. Since it is breathing related, it is constant. The lack of nerve signals being sent to the brain makes it torture. That is the hardest part to explain. I was so sleep-deprived, and sleep is such a motivator, I would do anything for it. My friends and family cannot comprehend my suffering, and cannot understand why I cannot transcend my problem. I would like nothing more than to successfully cope. I have two beautiful children that need a healthy father. I want to feel better so I can be there for them. Other than the physical symptoms, I suffer from a complete loss of well-being. I have severe depression and anxiety. I always excelled in school and work and, overall, things came pretty easy for me. I was so very capable. Now everything is so hard. Little tasks are hard. I spend my days trying to not lose it mentally. When I discuss my problems with my friends and family, it is very hard on them. They cannot help the situation so they do not know how to react. I try my best not to burden anyone anymore. As a result, it is a very lonely condition. Only my fellow ENS sufferers, who I met online, can comprehend what I go through. I confide in them. This is not my suicide note.  Although I am suicidal. Every day, I feel the urge. I force myself to make it one more day. I have been saying that to myself for years. I have never imagined such pain could have been brought to my life to ruin it.

~ by ens3 on November 15, 2014.

11 Responses to “Letter From a Suicidal ENS Friend”

  1. There is no cure except death

  2. Hello. I have been experiencing nasal symptoms similar to this.my turbinates were shrinked too much with radiofrequency by the doctor.the last doctor I have visited said that this situation is not empty nose syndrome but it is similar to ens because my inferior turbinates are too small.I have searched on the internet some drugs like viagra or estrogen cream which cause turbinate hypertrophy. I have not tried any of these drugs but maybe you can try. I hope things would be better in time. good luck.

  3. I feel your pain. I have to take Effexor in the morning and medicinal herbs to energize my self to get thru the day. i force myself to work out which does help normalize breathing and create sense of control over the condition. Weight training has helped me tremendously.

  4. Hola, mi nombre es Tatiana, un otorrino me amputo mis cornetes inferiores en su totalidad , y el medio izquierdo hace 9
    años. Desde ese dia de la cirugia senti que algo grave habia sucedido, no podia dormir , me ahogaba, me sofocaba, mi nariz por dentro se sentia tirante y muy seca. Hasta el dia de hoy sigo sintiendo lo mismo , solo que todo ha empeorado, mas reseca la mucosa de mi nariz, mas sofocacion,tengo oxigeno en casa, casi no puedo salir de la casa, tomo alprazolam en dosis muy alta para manejar la angustia o ansiedad de sentirme ahogada, me levanto muy cansada, estoy muy debilitada, no tengo dinero para ir a Ohaio, siento que mientras sale mi demanda voy a perder la vida. Escribo esta nota para que la enfermedad no siga siendo ignorada por los otorrinos que han acabado con la vida de muchas personas que al igual que yo estan lisiadas de por vida.

  5. You are not alone.
    My name is Sarah and Ive had a similar surgery on my inferior turbinate, but alsowith an “outfracture” procedure on my middle turbinate. My bones were cracked and pushed to the sides of my cavity.
    I too have reached out to Dr. Houser and am actually trying to save money to possibly have something done called alloderm implants. From some of his previous patients reviews, it sounds positive. If I can ask if he maybe mentioned something like this to you?

    Its bittersweet knowing there are others like us out there. Everything you listed is how I’m feeling and struggling with everyday. Theres just that hole..literally..that seems like it can’t be filled. Spirituality and structurally.

    In the meantime exercising.. as hard as it sometimes..but pushing through it really helps with some relief. I believe it might be the bloodflow? And also some sesame oil or xylitol spray it is called provides some extra relief.

    As of right now I’m riding on this implant surgery, otherwise day by day is how I take this too.

    From my strength to yours..I wish u the best

  6. I have had the condition for 20 yrs. I found that using dollar General vapor rub helps tremendously w/dryness. It has numbing effect. Also, at night I plug my nose w/ Kleenex and I breathe much better and sleep. This becomes a mental health issue. I still think of suicide, but take Effexor and klonopin for depression and anxiety. I also have found lifting weights and jogging or elliptical training help w/ mood. Also, check out Bullyxtreme.net. It’s an isometric device which has saved my life. if you don’t mind building big muscles and feeling like Hercules, don’t get it. But which is more important; killing yourself or fighting for life and actually feeling good again. Bully also helps w/ sex drive. Playing wind instrument helps, as you breathe thru mouth and music changes brain chemistry to be relaxed. I play French horn. All above have helped put ENS out of my mind long enough so I can feel normal again. John Deal

  7. I was helped trememdously in Hawaii, but any warm salt water sea should do, snorkeling for several hours, diving frequently, getting saline in nose and sinuses many times during those outings, and feeling an incredible sense of well being afterwards. It was shallow water, diving not over 15 ft looking at fish and coral, I would come and take a breath too soon, get saline in my mouth and blow it out through the snorkel, some of the saline would go through my nose into the mask, this done many times in those outings. My conclusion now, many years later finding saline irrigation is this, If you can’t take your nose to the ocean, take the ocean to your nose.

  8. Hello there,

    I feel all the exact same way as you feel! i can’t tell my all story of ens cause it would be as long as yours and very similar too. do you know dignitas? I’ve been thinking and considering as the very late option but It would be the only escape of this nightmare living with ens everyday. for me, i need several machine to get throught the day and still feeling very sick… I developped other deseases in accordance with ens like chronic GERD, osteoarthritis, chronic asthma, lung and respiratory fonctions decreasing…. need oxygen, humidifier,many medicines, etc… I feel I have the mixed of cystic fibrosis with AIDS combined together,even if i know i don’t have those ones but feeling my ens like i do have!!! i know your feeling, i have to take benzodiazepine to manage anxiety and still, it doesn’t always help! i understand your issues! I invite you in our facebook group. you register to facebook and search: Empty Nose Syndrom Awareness and also add: Empty Nose Syndrome Discussion Group
    have you tried alloderm implant? or something? what Dr.Houser proposed you??? he just let you go?? i would be surprise… tell me more please about your meeting with Dr.Houser. I’m waiting to have an apointment with him, but i,m afraid and doubt about if It’s really worth it… you can add me on facebook as Melens, my real name is: mélisa. nice to meet you!!! see you soon!!

    • Mel, My friend is a member of that group, and I believe you even know him, though I can’t tell you who he is. Just ask there your questions about Dr. Houser. We all have slightly different issues, and the same treatments that may work for one, will not work for another. I wish for you a treatment that will work.

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