Eustachian tube dysfunction for 6 months... i'm suicidal and not sure what to do....?

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I've had eustachian tube dysfunction in both ears ever since flying long haul with a bad flu/cold in November last year and nothing since has eased my symptoms. I went to my doctor a month ago and he dissmissed it really, told me to use a steroid nasal spray and do valsalva every hour and it should go away in a couple weeks. This spray has done nothing and I actually feel like it has gotten worse the past month. It causes a feeling of unbearable pressure in my ears and sometimes in my head and nose, affects my hearing, causes crackling and popping when i swallow, yawn etc. and makes me so miserable. If theres no cure for this then I'm not sure I want to keep living. I'm only 18 and have never felt this way before but I really feel so hopeless. My doctor just won't take it seriously as I feel he just doesn't know what to do. He said he would refer me to an ENT but reading online I feel theres no way an ENT can help me. After searching this on the internet for the past 6 months and reading all the stories of people never getting cured of this and having it for tens of years I honestly just want to die. I'm suffering from a tremendous amount of anxiety too as I am due to fly to Greece from the UK in the beginning of July and am sure that it will aggravate the problem. If this happens I don't know what I will do apart from just end it... I'm scared of feeling like this and wish that I just had my old ears back so much I'm crying as I write this. I have no idea what to do no one around me understands I just wish there was something that would cure me. Before this I loved life and was excited by the prospect of my future but now this condition has taken over every waking second of my life, driving me insane. I'm so lost and hopeless and in pain I don't know what to do... If anyone knows anyone who can actually help me in the UK please please get in contact. otherwise I fear I may do something stupid before the year ends... :'(

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  • Posted

    Hi caddddy.  Please do not "do something stupid".  There are things that can be done to help your ears' problem.  Regardless of what you have read on line, help is available.  Let's develop a plan of action for you...

    Step 1 is to not jump to conclusions about what your problem is.  It might be ETD or it might not.  It could be allergies or inflamation or a number of other benign things....all of which are very curable.

    Step 2.  make appointment to see an ENT that specializes in ear problems....not all ENT specialize in just ears.  Make this appointment as soon as possible.

    Step 3.  Between now and meeting with ENT try a couple safe simple things that might help, such as  an OTC decongestant. This helps some folks with the symptoms you express.  Also, ask your regular doctor about steroid dose pack as a way to reduce inflamation in the inner/middle ears that could be causing the problems.  Also, discuss a diuretic (water pill) with your regular doctor.  This helps pull fluid from the inner/middle ears that would give relief.

    step 4.  Ask regular doctor for a prescription for a anxiety med such as Ativan which helps calm the inner ears and reduces signals sent to the brain....and it helps calm your nerves.

    Write back to us after you see your ENT.  Tell us what the diagnosis is.  In the meantime, hang in there!  You will be ok....this is only temporary.  Have fun on your trip.

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  • Posted

    i don't know if the US is more advanced in this horrible condition but we have what is called Eustachian tube balloon dilation It was recently FDA approved this past September here. We also have that hasn't been FDA approved......yet but a stent procedure that they put into eustachian tube's to keep them open and then it dissolves. I'm sure that one is a few years away from being FDA approved but the point is that everyday they are coming up with new procedures.

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  • Posted

    Caddddy, my heart hurts for you as i read your post.  I was where you are at, so i can relate to how you feel.  Please don't give up!! There are ENT's out there learning more and more about ETD. The US is doing balloon dilation with good results. That's how i was cured.  There are others on here from the UK struggling like you, they may have more info for you.  The most important thing is to find a caring ENT that understands how devastating this condition is and is willing to help you find your answer.  Good luck.

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  • Posted

    Morning,  I live in the Uk and have stopped having holidays where it would required flying.  I have suffered this problem on and off since 1994.  I have recently finished a course of Prednisolone Steroid tablets to get rid of all the inflammation and dry up the mucus I make due to allergies and sinus.  I repeat my story over and over again on this Forum, in case people that are suffering the same haven't read it.  An ENT Consultant is definitely the person you need to see.  I see mine twice yearly.  As long as you don't get an earche with the Eustachian Tube Dysfunction, then you won't have an ear infection, which is a bonus.  I have suffered 7 perforations in my left eardrum over the past few years, and when this happens my consultant uses microsuction to remove all the horrible thick musus, after which I feel wonderful.  Blocked ears are such a horrible thing to suffer from.  Potentially, mucus when it sits in the ET can cause it to turn bacterial, that's when usually you'd get an earache and require antibiotics.  I know antibiotics aren't dished out like they used to be and that's a good thing, however, in 1994 in ETD turned to bacterial meningitis, so I always allert people on this forum to that possiblity.  I lost the sight in my left eye due to this.  I've tried absolutley everything to try and un-block my left ear in the past (all good at the moment since taking a 20 day reducing course of Prednisolone) Suffering allergies it will all build back up again and I'll be back to square one.  Put boiling water into a bowl, cover your head with a towel and breath in the steam fro at least 20 minutes, then squeeze your nostrils together and blow, you may find that will open your ET.  Keep using the Steroid based nasal spray, it has to be used a long time before you see a different....pretty sure it won't open tubes, but will help with the inflammation the swells the tubes that stops drainage.

    I do hope you feel better soon

    Kind regards Anne

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  • Posted

    Im going through this too since january. And it started getting better then got a sinus infection.  I started acupuncture but did it once and then got the sinus infection. Threw me back to square one. But will restart the acupuncture when they let me. I didnt find much help with ents. Mine was not compassionate tried four times they didnt even scan me. Im in the usa too. They dont just do surgeries They said its a hairlike structure the tube and its very delicate so they do not like to mess with it. It stinks. Its frustrating and annoying. But be patient. There are criteria for the baloon surgery procedure. And many times etd does resolve. The body cant be this dumb right! Im holding on and you need to as well. Anxiety wont help you heal or solve a thing. I just know a ton of little kids get this and they dont know it is not normal so it doesnt even phase them, the flying  need to ask the gp. They can poke holes in certain place so when you fly it wont go awry. The holes wont be comfortable but will stop it from getting out of hand.

    i dealing with it too. Its frustrating but i inow hurting yiurself wint helo a thing, nor is it the answer but you know that. And you csn be happy and such even with it. Desensitizing to it is good too. 

     

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    • Posted

      I copied amd oasted this im too new to reading about it but wanted to know if anyone is familiar with this.in the news - SCDS

      definition of SCDS 

      common symptoms of SCDS

      although it is commonly felt that SCDS patients always experience dizziness, many of these patients can experience ear fullness or hearing loss alone WITHOUT dizziness - 

      1. Fullness of one or both ears - often a patient with SCDS will complain that the ear with the dehiscence feels blocked or full. 

      2. Autophony - many patients complain that a "reverbation" or "echo" occurs in the problem ear(s) when talking or chewing or that one own's voice sounds louder in the affected ear. Patients will often state that they can hear their own heartbeat in the affected ear(s). 

      3. Hearing loss - when present, often there will be a an air-bone gap type hearing loss, and sometimes the audiogram will show supranormal bone conduction thresholds. 

      4. Dizziness - often the dizziness is triggered by loud, low frequency sounds or heavy lifting or straining.

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    • Posted

      i have weird stuff going myself. Popping sounds when swallow on and off clogged ears all weird tinntius. But ill tell you i had it once before and it all went away but took so long to do so . Many blame tmj on it

      .

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  • Posted

    Dear Caddy.I really sympathise with you & fully understand how you feel.Unless one has felt that pressure that builds up it's rather impossible to imagine that feeling you can't get away from.I've written quite a lot in the past few months on the subject if you care to look back.I've seen tanney's remarks & they make a lot of sense.At the moment I'm in the middle of a medidation course & it's helping a bit.It's helping to deal with it  in a positive manner.

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  • Posted

    Hi Caddy,

    Everyone will get fed up of me recommending Prednisolone Steroid Tablets for this condition.  However, in my own experience of this dreaful complaint ETD it's the only thing that works for me.  I've been using them approximately ever other year for quite a long time now.  It's when my ears get unbearable I just have to take them.  When they are really plugged, like yours seem to be, ask your doctor for a 20 day reducing method of the Prednisolone, I guarantee will not hurt you.  Only problem I find is the period I'm on them, just under a 3 week course, I find I can't sleep, but that is a small price to pay for them to clear up all the inflammation and get your ears back working again properly.  If you're able to take them, if the problem returns, which will be quite a long time, you could discuss with an ENT consultant Balloon Dilation or Tubes, both of which my consultant won't use on me.....but I am an older woman, but having suffered this problem since the late 1980's and contracting bacterial meningitis through it, where the mucus in eustachian tubes turned bacterial and crossed the blood brain barrier.  I would hate for this to happen to nayone esle.  The prednisoone will take a week to kick in, so don't stop them.

    Chin up you'll be fine

    Kind regards

    Anne

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  • Posted

    Hi my advice is to back to your docs if you can try a different one, but go back and keep going back till your taken seriously . Definitely get recovered to END as then you'll know exactly what's going on in your ears they're the experts don't give up hun. You can get through this. Xx

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    • Posted

      Dear Denise,Thanks for your comments,but after seeing several doctors & three specialists,none of who agree with each other,I have lost faith in the profession.

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  • Posted

    Dear Caddddy,your symptoms are almost exactly the same as mine & if you read some of the things I've posted here you'll realise that unless you've been stricken with this condition nobody else begins to understand it's nature.

    I'm going to Mindfulness classes where you are taught various forms of meditation & Yoga.It won't cure the condition but may help you deal with it.

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