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Eustachian Tube Dysfunction Cure

Posted , 60 users are following.

Tympanic
Tympanic

    As far as I know, there is not ETD cure, yet. I am interested in finding one. I am a Caucasian 34 year old man living in Santa Clara, CA. I have a BA in Psychology and work in a Neuroscience Lab. I was diagnosed with ETD a year ago. I have been suffering from it for 17 years. 13 years ago I had a bought of Bulimia that lasted for about a year. I had Anorexia Nervosa as an adolescent. I was given the maximum dose of testosterone to boost me through puberty since Anorexia was preventing it. Soon after I abused alcohol, marijuana, tobacco, and various other drugs until 2005. I believe all these factors have contributed to my ETD. I was diagnosed with OCD and Generalized Anxiety Disorder two years ago and have been taking Effexor (Venlafaxine) to cope. An Ear, Nose, Throat  doctor (currently called Head and Neck surgeon in US) prescribed me Flunisolide (coritcosteroid) to reduce ETD inflammation. It seems to help a little, but it is certainly not a cure, even when used for a significant period of time (i.e. 3 weeks).

    My ETD has been recently aggravated by my attempts to remove pimples and skin tags, which may be a symptom of OCD. Has anyone else experienced this situation? Numerous doctors say there is no connection between the skin abrasions and ETD, but they obviously don't have ETD.

    Primarily, I am asking for information regarding ETD. I need to know the statistics of ETD so that I can develop a valid research proposal. Health organizations neglect to respond to my questions. It seems that most biological research is involved in diseases such as cancer and heart disease, which is great. But, as I am sure that anyone reading this knows, Eustachian Tube Dysfunction is a debilitating disease that hinders one's ability to live to their fullest potential. As I have recently graduated with a Bachelors degree. I am researching what my next step will be. I am strongly leaning towards statistics and data mining, since that is a much needed position in all research fields.

    I am looking for information on the number of people with ETD worldwide and specific to certain regions. A timeline of ETD cases in these regions. Research groups, Academic and Professional, that are researching ETD. Research groups that are investigating ETD from the Neuroscience and/or Ear, Nose, Throat (Head and Neck surgery) perspective. Any other information is helpful as well, especially your own personal accounts of ETD. Please share your history, as much as you care to disclose, so that I can begin to develop an etiology of ETD.

    I have read many of the other discussions on ETD and recognize that many of you are suffering and I certainly empathize with you all. I am still trying to decide if my anxiety disorders are the result of ETD, my ETD the result of my anxiety disorders, if they are mutually intertwined, and/or if something else is going on. I very much hope to hear from you so that we may begin to develop a cure for ETD so that we may not be hindered by this ruthless malfunction.

   

1 like, 209 replies

209 Replies

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  • carloscrosa
    carloscrosa Tympanic

    Posted

    Hello Tympanic, i have been following this discussion now for a year, i have ETD for 2 years, i have tried everything, accupunture, inhalers, sinus drops, etc.

    I have found something that DOES work, DEXAMETHASON.

    I try prendisona and other corticoids before, but this one, is the only one that has worked, please i ask you to pass this info to anyone suffering this terrible thing.

    I can say that i\m 75% on my way to recovery.

    thanks!

     

    • kellyzboyz
      kellyzboyz carloscrosa

      Posted

      My son tried Dexamethasone, it helped him somewhat but he said he felt really loopy from it and wasn't able to stay focused in class. Does it do that to you?
    • kellyzboyz
      kellyzboyz

      Posted

      Tympanic, thank you! Couldn't remember the name, lol.
    • carloscrosa
      carloscrosa kellyzboyz

      Posted

      Yes, i felt really bad with it, very hard to sleep, drowsy, leg pains etc.

      i used it for 10 days, did 16mg for 3 days, 8 miligrams 3 days, 4 x 2 , 2 x 2.

      Had a lot of bad sympthoms.

      But now, (a month after), i'm so glad i took it, my ear is 75 % recovered. I'm doing a detox now, eating well, to go ahead with a longer treatment of it to take for 25 days as my doctor initially recomended. (on a lower dose i may do)

      Tottaly worth it!

  • selina16468
    selina16468 Tympanic

    Posted

    I recently found out I have etd and I'm on a steroid and got told to call the ent specialist.

    Since you have more knowledge of this. Was wanting to see if you could answer some questions for me that the websites can't...

    * do you know if there's triggers that make this worse?

    *have u noticed its at its worst at a certain time of day?

    • erica27186
      erica27186 selina16468

      Posted

      For me it can be worse at night. I restrict caffeine significantly. Elevation changes are the worse for me, so are weather changes.
  • cody42265
    cody42265 Tympanic

    Posted

    Hi. I have very similar issues that you are dealing with. I've had ETD for 10 years

    (I am 30 now). After I developed ETD, I started showing signs of OCD due to the stress of dealing with ETD. It has been a miserable ride. I also developed hyperacousis due to my right ear being constantly plugged. I have always had problems as a kid with my ears only while traveling in fluctuating altitudes. But when I was 20, I got a bad ear infection and have had problems ever since. What I have taken for years now is flonase daily in conjunction with an antihistamine (Allegra). I also take fish oil and zinc daily to help with reducing inflammation. I cut out ALL dairy permanently from my diet too. I also take 80 mg of Prozac daily for the OCD. I also run marathons (good for easing my mind). I have followed this regiment for 6 years and it has helped me out a lot. If my ears ever become plugged due to the seasons changing/dealing with allergies, I will take prednisone for 10 days. I also drink a bunch of water daily. I've pretty much treated myself through tons of research and thousands of dollars worth of doctors visits. I am very educated on ETD as well as I have been experiencing and treating it for 10 years now. Another thing: I stopped drinking alcohol and if you smoke cigs, absolutely cut that out : )

  • jogalloway
    jogalloway Tympanic

    Posted

    Hey guys. Glad I found this group! WOW I might actually have some more answers about my own sickness after reading all your stories. First let me send positive energy your way. I see everyone has been through a lot with this ENT mess.  As for me, well to be brief as possible. I've spent thousands of dollars and have seen so many doctors for the past 10 years I just can't keep up anymore. All this time I thought perhaps all of my symptoms were cause by TMJ since I had jaw pain and crossbite. So I forked out 2,000 on a splint one time and another 5,000 on a splint another time and it never fixed the pain! Head pain, ear pain, scalp pain, neck pain, stomach pain!! Constanstly spitting up all day every day non stop, ears popping, popping when I swallow. It just never goes away. I finally just saw an ENT and he suspects ETD so I am on a nasal spray, sterioids and I take some pills before I sleep. It's not really helping but I am stickining to the regime. He said if it doesn't work we can look at putting some tube in my ear to open the air flow. Still feeling like I will never get my life back, but I never lose hope. It's a battle but there has to be better treatment solutions!!!

    • jogalloway
      jogalloway Olizzieo

      Posted

      I did see a chiropractor, actually several...but they always tell me different things. I get absolutely no relief. My symptoms have actually worsened and I just started a new job which is why I hadn't been on here in a month. I was just thinking I can't take off any work for awhile and I have to just suffer. It's horrifying I still am left without answers as to what's wrong with me. rolleyes

  • elaina80423
    elaina80423 Tympanic

    Posted

    I made an account based on this discussion lol. I'm very lucky where I live I guess. Let me share my story.

    I've had TMJ and I even had the surgery, top and bottom jaw broken and extended and the roof of my mouth widen and all that fun stuff.....I would have the surgery again it helped me so much. That was back in 2005. Ok, so about a month ago I decided to get certified in scuba diving......I was almost finished and 3/4's certified, all I had left to do was my last 2 dives and it was all the easystuff, I had passed all the hard stuff but when I finished my first 2 dives, my ears hurt so bad it was ridiculous. When I woke up the next day with blood on my pillow and puss draining out my right ear, I decided not to finish my certification until I saw my doctor. This was sunday.....Monday I saw my doctor. I had inner biotrauma to both ears but I didn't rupture my ear drums......yaaaaaay me. Lol so he gave me ear drops and antibiotics for the infection behind my eardrum and that it would take 3 to 4 weeks to heal.....OK so yesterday (Thursday ) I saw my doctor and he said everything looks amazing. Yaaaaaay lol but he said I may have eustachian tube dysfunction and referred me to a ENT. they called me today to make an appointment and I was able to see him TODAY!!!!! I have kaiser. The ENT looked in my ears and said up that's what I have. He's sending me for a hearing test which I have Aug 8th. He wants me to take Flonase everyday for a month and then when I practice diving in the pool to take Afrin and Sudafed together 30 minutes before I dive in the pool to see if I can equalize any easier my pool is only 8 feet deep and I noticed the pressure on my ears. I told him I didn't want him cutting into my ear drum because I want to continue diving. I asked about the Balloon procedure. He said that he doesn't do it but it is available. I also asked about having a stint put in my eustachian tube and he said they usually don't do that because it's close carotid artery and it's dangerous.

    I've had many ear infections as a kid and I may have scar tissue build up in there. My hearing seems muffled and I try to pop my ears but it doesn't seem to pop.I've tried everything. I'm not sure how much the surgery will cost but it seems successful. I've done some research on it and I'm willing to try it. If I have the tube put in my eardrum my ears will automatically equalize and I could dive 300 feet straight down with no pain BUT my inner ear is exposed and I will get water in my ears. I know there are special ear plugs and such but I'd rather try the Balloon.....please keep me posted as I will update as well. The Balloon is a new technique and people are scared to catch on. Sometimes it takes 2 time stop open up the tube.

  • hollie87618
    hollie87618 Tympanic

    Posted

    I am 44 years old and have ETD that I was just recently diagnosed with it. I have a tube in my ear and have had the hole in my eardrum just repaired and am still having problems with a lot of pressure. I still have still some hearing loss and am getting a hear aid for my left ear. The pressure gets so bad that I just want to be alone. The doctor talked about middle ear exploration surgery if nothing changes when I go back in 6 weeks. I just don't know what to do anymore I feel like I am losing my mind.

    • hollie87618
      hollie87618 jogalloway

      Posted

      Thank you. But as of right now I am not having much luck the pressure in my ear has been very bad for the last few days and now my neck feels like it is stiff on my left side which the problem I have is in my left ear. So at this point I have no clue what is going on and scared to find out. I have the ringing going on in my ear as well. I go back to the ENT on 9/13 so lets see what he says. My hearing loss is at a 56-70% which is bad but cannot get a hearing aid because insurance won't cover it and cost $1,400.00 and I don't have that kind of money.

    • theresa04217
      theresa04217 hollie87618

      Posted

      OMG Hollie.  I am 48 years and had almost the SAME EXACT THING happen to me.  I have been dealing with now for 3 years and in the last year it has gotten worse, so much so that I have hearing loss, had to get a hearing aide, and now also have tinnitus, constant high pitched ringing in the bad ear.  So, I got an eartube put in to relieve the pressure.  3 months later, my ear tube was dangling by a thread, my hearing TANKED in my left ear, and I was left with a giant hole below where the ear tube was, that had to be repaired.  It is slowly healing up again, but I have days where the pressure is so bad, it is debillitating and interferes with my ability to concentrate.  I just feel horrible.  My ENT advised that I may be suffering from TMJ which could be contributing to the stuffy feeling in my ear.  Although I did get a mouthguard from a dentist over a year ago and had my jaw adjusted, I had never had any pain.  But now, I am having some pain under back teeth in my jaw and so am going to see a TMJ rehabilitation person.  She really believes that it may be TMJ that IS causing my eustacian tube to not work and causing that stuffy feeling in my ear.  I am hopeful with a couple months of TMJ therapy I may be able to find some new relief.  I am also taking some amitrytaline/gabapentin for nerve related pain coming from my jaw.  Just wanted to share because my story is so similar.  It has taken me so long to try and figure this out, and I am just so thankful to be trying something different that may lead to recovery.  I am thinking if this does not work, I may consider going to see Dr. Poe in Boston (1.5 year waiting list), but like you, would do anything to deal with this phantom conjestion and now hearing loss and tinnitus.

      Best to you! -T

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