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    Old 07-07-2001, 08:16 AM   #1
    vernon123
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    Post I CAN'T LIVE THIS WAY

    Untill January 12th, 2001, I had a healthy life which I did not fully appreciate. Then, life as I knew it ended. My left ear was injured, resulting in a perforated ear drum, swollen auditory canal and infected middle ear. Instead of taking two to six weeks to heal, this developed into eustachian tube dysfunction. The last six months of my life have been a real life hell that nobody understands. I lost a great job, appartment and car because I am in too much misery to work or go to school. Essentially, the pain and discomfort torments me every waking hour, minute and second. Usually, my ear feels very plugged and uncomfortable with hideous crackling and snapping sounds sometimes when I swallow. On top of all this misery, I sometimes get a very unbearable twitching and thumping sensation in my ear. At the very worst, my eustachian tube goes from being plugged shut to abnormally open. I hear myself breathing. Then it slams shut, popping the ear drum. This last symptom has caused me to have numerous nervous breakdowns as it feels like it will go on forever. Had I had a gun, I would have blown my brains out by now. On a few rare occasions, I had false hope, feeling like it was less plugged and finally healing. Instead, it worsens again. If this does not go away in another six months, I have no choice but to commit self **********. I am a man who lives life on my own terms. Living at home, dependant on my family and feeling like a sick dog is no way to live. People die in car accidents and plane crashes all the time. If I can't get my life back, I must terminate this deplorable existence. Let this be a warning to anybody who is viewing this out of sole curiosity. Protect your eyes and ears. One sole mistake and your life will be flushed down the toilet like mine. Goodbye.

     
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    Old 07-08-2001, 08:19 PM   #2
    rrath
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    Nathan,

    I am truly sorry that you are experiencing this problem, most of us on this board can identify to some degree with your situation. I will admit there are times things get really tough but then there are times when things are'nt quite so bad. My suggestion would be to seek out as many authorities on your problem as possible(the internet is a great place for that) and don't lose hope. New developments are coming out every day. Perhaps there is a solution to your problem, if not today then maybe tomorrow or perhaps next year. Taking it one day at a time is the key, it's also good to talk about the problem.

    Take care!

     
    Old 07-10-2001, 03:36 PM   #3
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    Please don't do something stupid Nathan. I too suffer from severe Eustachean Tube Dysfunction from an infection I got in 1993. I have had awful problems ever since. My left ear is far worse than my right and I experience the same crackling and annoying popping that you do. At times I want to just scream. It took years for the popping and crackling to subside. Once it did, I was still plagued with it whenever there is a pressure change outside. I cannot fly on airplanes or go into high elevations. Last year I went to Vancouver and suffered so badly on the airplane, that I lived on decongestants, etc. the entire time in Vancouver. Upon return to my home, I went to the doctor. It took months again for my ears to feel somewhat better.

    I went to ENT specialists and the one told me he would never consider putting tubes in my ears. I went for a second opionin and this doctor said that would be a solution to my problems. I had the surgery last week and guess what - all of the crackling and popping is now back. I am furious and fit to be tied. I thought this operation was going to help me and not make things worse. I am going to see the specialist next week so he can check the tube in my left ear. It feels like there are worms crawling around inside my ear and it drives me absolutely crazy. No matter what I do, I cannot get rid of the popping. I must find out if the tube has moved or is falling out. There are no guarantees that the tubes will stay in for any specific amount of time. I am concerned that I am back to square one and that this operation is not going to help, but make things worse. If I have to, I'll have the tubes removed and live with what I had before.

    I have learned to live with it the best I can. I am not going to let it affect me where I lose my job and want to end my life. Nothing is that bad. Please know that you are not the only one who suffers from this condition. Plese check into having tubes put into your ears.

     
    Old 07-11-2001, 09:53 AM   #4
    vernon123
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    Thank you very much for your sympathy. I am so sorry to hear about your condition Karen. It is so difficult trying to cope with a condition that bothers me almost every waking hour of my life. What you told me about the crackling, popping returning after the PET tube was placed in your ear does sound like a good warning. My initial injury consisted of a perforated ear drum and the popping and crackling was 20x worse back then. The ENT I am now seeing suggests trying a PET tube, but I believe that can only help the clogged, congested feeling my ear gets. The popping and crackling will probably stay the same or get worse. Besides, it has been only six months since the injury. My GP told me to wait a few more months before considering it. I do admit that the popping episodes occur far less and last shorter than they did three months ago. That annoying twitching and thumping in my ear has almost disappeared over the last two weeks. I know that it can return again, since it has been dormant before. I read a message board where one guy wrote how he had a catheter inserted into his ET that was then plugged up to bypass his patulous eustachian tube. He then had a permanent PET tube inserted to replace the eustachian tube. My question is if this last resort treatment really works or if it is still being done? I heard that in the old days, doctors would insert a catheter to unplug a eustachian tube. That resulted in hearing one's voice and breathing constantly. Please don't ever be resigned to living with this for the rest of your life. There are new treatments cooming out, one being laser surgery. Keep after the specialists about any treatment that may be out there. You sound like someone who has a very strong will to live. I admit that I have always had a problem tolerating stress and hardships. That is why now I am crumbling under this first real problem in my life.

     
    Old 07-12-2001, 08:36 AM   #5
    IACKaren
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    Hi Nathan:
    I am also upset about some of the ENT doctors in my area. The first one I went to said I was fine and that I should never plan to go anywhere in an airplane or go into higher. He might as well have put me in prison. I know that permanent tubes wont be my answer because when I went for the tubes last week, the doctor had a very hard time getting them into my tiny ear canals. He had to push and prod and I think that is why my own Eustachean tubes are now irritated once again. The crackling drives me insane like you, but I don't really let anything stand in my way of living. I have had so many stresses and problems over the years from outside sources, that I am used to handling things. It has made me a very stron-willed determined individual. I also have a lot of faith in God as well. I won't be permanently disabled - I just won't let it get the best of me. I'll let you know the outcome of my followup visit next week. I may have the tubes removed and let my ear canals heal and hope that the popping and crackling subsides somewhat. My ears also feel full like a lot of pressure is inside there, but the hearing tests are normal. I am getting on an airplance on Sept. 8 and it really scares me becuase how I feel after. There is something called Ear Planes on the market now that I may have to try if the tubes don't work out. Keep in touch.

     
    Old 07-13-2001, 02:36 PM   #6
    vernon123
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    It is so easy for those doctors to downplay a condition and simply tell people to place restrictions on their lives. I believe that I too have difficult ears, curved canals. My general practitioner has great difficulty seeing my ear drum. It would stand to reason that if I go through with the PET insertion, there is a greater risk of injury or irritation. It feels like my eustachian tube dysfunction is more of a dynamic than static condition. From this I mean, it only feels plugged shut some of the time to varying degrees. The snapping, twitching, thumping and popping seem to be caused by the eustachian tube functioning erratically. Sometimes, it opens wide and I can hear myself breathing. Then it slams shut, severely popping the ear drum. Mercifully, this happens only one to two times every few days to weeks. I find that I can better tolerate my ear feeling plugged shut than when the eustachian tube is functioning erratically. My general practitioner prescribed me 0.5 mg of Clonazepam, a sedative to be taken up to twice a day as needed. He also prescribed 30 mg of Codeine to be taken up to twice a day as needed. That nulls the pain and discomfort from my ear popping or twitching. Amazingly, it seems to make the twitching and thumping sensations go away! Ask your doctor about these medicines. He may be reluctant to prescribe them as they have an addictive quality, but what is worse? Being driven up the wall or feeling less pain and discomfort? So far, I have only needed to take them once every few days. Good Luck.

     
    Old 08-03-2001, 05:57 AM   #7
    rosalita100us
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    You guys aren't alone. a couple of years ago I had an avm behind my right ear and it causes a loud heartbeat noise. the noise got louder and louder was there all the time. I thought about suicide to end it, but in the end I had a surgery after 10 months of treatment(a 12 hour surgery) and it was fixed. I too took clonopam and i took sleeping pills to sleep (I had to to tolerate it) Now that ear has an abnormal skin condtion called keratosis where the skin is flaking off in the eardrum instead of the canal and causes the drum to swell and hurt.If I don't go see the ent every 2 weeks to clean it, I am in pain. In the end it comes down to we love life more than we want to die and just because one person dosen't have an answer keep looking. My avm behind my ear was thought incurable but I found someone who did cure it. Hang In There guys.

     
    Old 08-23-2005, 07:44 PM   #8
    davejinpa
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    Re: I CAN'T LIVE THIS WAY

    Wow, I can't believe that I am reading all of this!! I have been suffering for about 5 or 6 months now with what many of you are descibing. It all began for me when I took a plan trip for work and suffered a great deal of pressure in my left ear on decent. I experienced a popped ear drum several years ago in college also while flying on a plane.

    When I first went to the doctor, my primary care, she said that I had a good bit of fluid on my ears and put me on Nasonex for a while. When that did not solve the crackling and poping, I asked to go to an ENT. After a full exam with the ENT he told me that there was nothing else that he could do for me that everything looked normal. I was not happy with this response!

    I then returned to my primary care doctor who prescribed Nasicort. Both medicines helped the pressure but did not get rid of the crackling and popping. I then asked my primary to set up an appointment with a different ENT in a bigger city near my home. This appointment is scheduled for 08/29. I am hoping for at least some straight answers regarding what I may have. The previous ENT doctor did not even mention any ETD or other possibilities.

    Regardless, I am glad for the support of this group and will not give up until someone gives me some answers that I can LIVE!!! with.

    Last edited by davejinpa; 08-23-2005 at 07:48 PM. Reason: misspelled word

     
    Old 08-24-2005, 04:44 AM   #9
    lib
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    Re: I CAN'T LIVE THIS WAY

    Quote:
    Originally Posted by davejinpa
    Wow, I can't believe that I am reading all of this!! I have been suffering for about 5 or 6 months now with what many of you are descibing. It all began for me when I took a plan trip for work and suffered a great deal of pressure in my left ear on decent. I experienced a popped ear drum several years ago in college also while flying on a plane.

    When I first went to the doctor, my primary care, she said that I had a good bit of fluid on my ears and put me on Nasonex for a while. When that did not solve the crackling and poping, I asked to go to an ENT. After a full exam with the ENT he told me that there was nothing else that he could do for me that everything looked normal. I was not happy with this response!

    I then returned to my primary care doctor who prescribed Nasicort. Both medicines helped the pressure but did not get rid of the crackling and popping. I then asked my primary to set up an appointment with a different ENT in a bigger city near my home. This appointment is scheduled for 08/29. I am hoping for at least some straight answers regarding what I may have. The previous ENT doctor did not even mention any ETD or other possibilities.

    Regardless, I am glad for the support of this group and will not give up until someone gives me some answers that I can LIVE!!! with.
    there are a lot of ys out there like this, what triggers the crackling and popping? this is a big clue!
    lib

     
    Old 09-12-2005, 09:44 PM   #10
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    Re: I CAN'T LIVE THIS WAY

    WOW! I'm sorry. After 30 pounds weight loss, losing my job, panic attacks and the only relief I got was running water and hearing cars go by, I still havent adjust to my "T". Im living 1 day at a time (Im adjusting a little). my friend told me about this board and it's a comfort to know Im not the only one going thru this and It does sadden me to know that WE are going thru it.
    started 8 mos ago with ringing that lasted for 6mos. Before it went away, the ticking begun. Now, I have hissing, cricket Sounds, popping and ringing (10 secs every day) there are times when I feel the same as you.
    If I sleep on my right side, the ringing will begin and last for a a hour or 2. Sleeping on my left hissing sound becomes worse (louder). So I have to sleep on my back. All the doctors I've been too stated I have to learn to live with it. The audiologist told me not to return until I lose my hearing.
    My beautiful granddaughter is a blessing and caring for her does take my mind off of it.
    Try to keep yourself occupy.
    Whylly

     
    Old 11-06-2006, 04:07 PM   #11
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    Re: I CAN'T LIVE THIS WAY

    I have been suffering from clogged feeling in my right ear for almost two years now finally went back again to an ent who put a tube in my right ear. I had false hope that this would give me some relief but its been in for a week now and I am still miserable. I am ready to end my life sometimes too because I cant function the way I used to, all I do is cry and call doctors on the phone and spend countless money on medicines that do not work. Called the ent up again today and was told to try the antibiotic ear drops in the ear and if they didnt help to come back in so the tube could be removed,. I dont know if I should be more patient and hopefully it will help or just have it taken out and hope for the best, actually I am pretty close to losing all hope, my family doctor wants me to take anxiety meds and wants me to see a physical therapist, all I want is for my ear to feel normal again. Any advice on ear tubes would be appreciated. Thanks for listening. Joanne

     
    Old 12-13-2006, 04:11 AM   #12
    ccc123
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    Re: I CAN'T LIVE THIS WAY

    Hi guys, have been reading all of your messages and I can greatly sympathize. I have been in the same state of mind in the past believe me.I have had terrible eustachian tube dysfunction (in the left ear mainly) for over twenty years! At times I have felt like screaming and had cried myself to sleep many times, due the discomfort and blocked feeling and echoing sound in the ear.

    As a last resort my ENT doctor sent me to the head man, a Professor of ENT in Sydney (Australia), where I live. I asked him if he had any new ideas for helping a 'patulous eustachian tube' (that is the name for this annoying condition). He gave me a pamphlet on 'Sound Therapy' which I took home and read with great interest, though with some skepticism. I rang the company that is located in Gerringong NSW Australia and they explained how the therapy could help me. I have been using the specially filtered music tapes now for just on a year. I had such improvement after the first 3 months that i have not had to worry about finding any other therapy. It has not cured me, however it helps to greatly relieve the symptoms. Life is now again enjoyable.This will be a treatment now that I will probably use forever.Please investigate this therapy. There is much information from this company to read when you do a search.

    All the best and I hope this information will bring you comfort and relief. Let me know how you go. Bye for now CCC.

     
    Old 12-20-2006, 08:23 AM   #13
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    Re: I CAN'T LIVE THIS WAY

    Hi all.

    I'm a PET sufferer too.
    Searching the Internet, I've found the following site

    [url]www.eustachian-tube.net[/url]

    where a Swiss ENT, based in Geneve, proposes a surgical approach to cure PET.
    The same approach is proposed by a doctor in Boston.

    The approach consists of an injection of a non-reabsorbable substance into the walls of the Eustachian Tube and, in a more severe case, the insertion of a cartilagineous graft into the anterior wall.

    I do not know if I can add more information here.

    Bye

    Remmy

     
    Old 06-02-2007, 10:54 PM   #14
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    Re: I CAN'T LIVE THIS WAY

    Xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx x

    Last edited by elogan135; 06-02-2007 at 11:01 PM.

     
    Old 06-02-2007, 11:01 PM   #15
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    Re: I CAN'T LIVE THIS WAY

    I have had this same ear crackling for nearly 2 years now. I was diagnosed with Chronic Sinusitis. I've tried Everything!!! Antibiotics (Amoxicillan, Avelox, Omnicef), Flonase, Nasonex, Afrin. Neilmed (Nasal Rinse). I'm even on Ambien for sleep because I haven't had normal rest in the last two years due to this!!! Finally I ditched my prior ENT who in my mind was usless. I went and got tested for allergies last month and they came back negative. My allergist then took a camera and looked up my nose. He said I had a nasal polyp. He did a much better job in one visit then my ******* ENT did in an entire year!!! I then brought him copies of my CT scan (I've had 3 in the past year) and he said I definately look like I have polyps. He referred me to a different ENT who took a hearing test that showed no hearing loss. I also went to a neurologist to test for nerve damage. All tests came back negative. The ENT now has me on Prednisone (Oral Steriod - with many side effects) for about a week only because it has severe side effects. I'm also continuing the Singulair because it's supposed to block lukotrienes which normally cause the swelling in both allergic and non-allergic people. Anyhow, I will begin the predinsone treatments tomorrow. Hopefully the swelling will go down and the crackling go away. If it doesn't he's recommending endoscopic sinus surgery. I have been completely miserable from this. I'm 35 single and have no children. I can't even date because I feel so uncomfortable all the time. One thing I've notice that helps is a lot of exercise. Running, lifting weights, Yoga and a balanced diet with lots of water have helped me a great deal with the stress of this. Good luck to you all.

     
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