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What's wrong with my ears?

Posted , 5 users are following.

katrina08
katrina08

Hi everybody, I made this account only to try and figure out what's going on with my ears. Based on some of the things I've read in this group so far, it seems like I may have Eustachian Tube Dysfunction.

My ear problems first started when I was 5 - I felt like I had water in my ears that wouldn't come out. A trip to the doctor a few weeks later told me that "it would go away as I got older, as the tilt of ear canals change around age 13". For the next ten years, I went to hospital 3 times with such bad ear infections that my ears would bleed and soak my pillow. Each time we asked the hospital if I should be getting tubes in my ears, and each time the hospital said no - I had "ruptured my ear drum, but it would repair itself". Every time I got even a minor cold, I lost my hearing almost entirely - it would sound like I'm completely submerged under water, and this is something that continues to this day.

At age 15, I went back to the doctor because nothing had improved. The doctor said that "it wasn't really water in my ears, but air, and that it was caused by allergies; if I wanted the pain to go away, I had to get rid of my cat". After much grumbling the doctor referred me to an ear/nose/throat specialist, who determined that my hearing loss was minor so he wouldn't do anything about it (even though it often caused me pain and changed the way things sounded).

I eventually figured out that if I sniffled, I could pop my ears 'back into place' (sounding normal rather than under water-like) temporarily (for a few minutes). So I've lived with it like this for the past 6 years, praying not to get sick, and sniffling every 5 minutes. But at this point at age 21, every time I open my mouth, yawn, sneeze, chew, swallow, etc., my ears pop.

I'm worried about permanent eardrum damage because it's been happening for so long (16 years) and my ears are popping constantly. It still freaks me out every time I lose my hearing due to a cold, and as a student/tutor/receptionist, I need to be able to not lose my hearing every time I get sick.

Could I have Eustachian Tube Dysfunction? Am I at any risk of permanent hearing damage? Any tips/advice for me?

Note: I saw in someone else's post that headaches are a possible effect of Eustachian Tube Dysfunction, and I get debilitating migraines about twice a week. I always summed it up to weather pressure and genetics (my moms gets them too), but maybe this could be somehow related?

0 likes, 9 replies

9 Replies

  • Madras
    Madras katrina08

    Posted

    Hi Katrina,

    I haven't used this website in a while but your post struck a chord with me.

    I have had most of the above since an extremely bad bout of flu (possibly glandular fever) in my first year of university that left me unable to hear for at least a month. The only thing that helped to unblock my ears was steaming a couple of times with eucalyptus in a bowl of hot water and putting a towel over my head, breathing in and out through mouth or nose. This may help unblock your ears when you get sick, just be careful with the hot water.

    I experience a constant popping noise with swallows or certain neck and face movements. I can manipulate the ear 'pressures' by holding my nose and blowing in or out to balance the horrible feeling of being unbalanced, but be careful doing this as it can damage hearing I believe. I get bad migraines once or twice a month, I find that the day after I feel sapped of physical and emotional energy and I am a pretty fit guy. So far, I have found nothing that helps. I suspect possible chronic fatigue, anxiety related or possibly lyme disease as I vaguely remember being bitten by a tick once.

    • katrina08
      katrina08 Madras

      Posted

      Thanks for commenting! I'm sorry you're dealing with this too but I'm glad to hear my experiences are shared! For me, showers/baths/anything with steam actually tends to make my ears worse, that's so weird!

      When I first started popping my ears I would have to plug my nose, but very quickly I found out I could do it easily without even covering my nose. And yes I definitely feel like it could damage my hearing, that's one of the main reasons I'm concerned too!

      Also, ditto on the migraines, sometimes they get so bad I throw up or get tunnel vision and then I have to sleep it off for half a day. I think definitely the things you suspect of causing your migraines could be causing them, because so many things can cause migraines. I don't think any of those are at play with my migraines, but maybe it's a combination of the ear problems + other factors like fatigue & anxiety or the weather?

      Thanks again for sharing! Once I get to the doctor I'll update on what they say.

  • tammi95765
    tammi95765 katrina08

    Posted

    Hi katarina

    I have suffered most of my life with my ears

    I had a eustachian tube dilation done which was definately not the answer and in fact made my ears worse

    I have had grommets (tubes ) inserted many times and I feel from my experience this really did help me

    I think you need to make an appointment with another ENT and get tubes inserted

    Hope you get relief soon

    • katrina08
      katrina08 tammi95765

      Posted

      Hi Tammi, thanks for your comment! I am planning to go to my doctor very soon to be referred to a (different) ENT specialist. Hopefully tubes would be helpful for me as well!

  • aspano79
    aspano79 katrina08

    Posted

    Hello!

    I'm shocked to hear you never had tubes put in your ears. You didn't see an ENT when you were younger?

    It sounds like you are definitely suffering from ETD. Being a long time patient of ETD and Tinnitus and undergoing 5 surgeries in the last 6 years, I can provide you insight, although I am not a doctor.

    1. I wouldn't worry about permanent ear drum damage. They make prosthesis ear drums that can actually make your hearing better. I have one in my right ear and my hearing improved by 20%. The hearing loss you should be concerned about comes from your sensory hair like cells found in your inner ear. That is where permanent hearing loss comes from, when those hair cells become damaged. This is also the main cause for Tinnitus (which I don't wish on anyone). So, if your ear drum is damaged, it can be repaired or even replaced.

    2. You need to have tubes inserted immediately!

    3. There's options for a new surgery called balloon dilation. It has a high success rate, but also has many failed cases; I was one of those failed cases. In the failed cases, it actually made things worse or opens the door for other problems like Patoulous Eustachian Disorder. However, if it works, it cures ETD and can work wonders for you. My best advice if you decide to pursue this procedure is to see one of the best surgeons in the country for that surgery, not just your local ENT.

    4. Have you tried Eustachi?

    5. How about the valsalva manever?

    6. Have you tried prescribed nasal steroids?

    Hope you find relief. But do know that you are not alone and millions of people suffer from symptoms just like you. We've all found ways to cope. You can read about my story by clicking my username.

    • katrina08
      katrina08 aspano79

      Posted

      Wow, what a great comment, thank you so much!!

      I have seen an ENT twice, the first time he told me the hearing loss was minimal so he wouldn't do anything about it (understandably my parents and I were pretty frustrated) and the second time we saw him a few years later he was really just annoyed that we had come back and hardly even looked in my ears.

      I was prescribed nasal steroids a few years ago (my mom has them for her allergies and it works for her, so she had to really force the doctor to give it a shot) but unfortunately it didn't do anything for me that an allergy pill doesn't do, and it didn't change my ears.

      I'm very glad to know that hearing loss isn't a big worry! That takes off a lot of stress 😃

      I've just done a quick search on the Eustachi and it seems like the effect it produces is the same as the "popping" that happens to me (often involuntarily) when I sneeze, sniffle, yawn, chew, etc. It's cool to know they make a device for that! As well, when I searched for the Valsalva maneuver, I definitely recognize it as something I've tried before but it just makes my ears full/sounds like water is in them, so it produces the opposite effect I try to achieve.

      Thank you so much for your comment, it is really, really helpful and very appreciated! I have an appointment with a new doctor to be referred to a new ENT on Monday, so hopefully this is the first step to getting some positive change!

  • tammi95765
    tammi95765 katrina08

    Posted

    I totally agree that you definitely need grommets

    I too had eustachian tube dilation tube surgery which was not successful at all

    but grommets absolutely help

  • katrina08
    katrina08

    Posted

    Hey guys, just a quick update - I saw a new doctor and asked for a referral to an ENT specialist who isn't the same one I've seen before. This new doctor was amazing, and I was only in his office about 30 seconds telling my story before he said, "You absolutely need tubes in your ears. You should've had tubes years ago. You have a problem with your Eustachian Tubes, and it will not get better on its own, you need tubes. I'm sorry your family doctor told you 'no' for years, he was wrong and he could've saved you a lot of pain". He sent in a referral for me so I should be making the appointment with the ENT specialist in a few days, and I'm guessing I'll have to get tubes after that. But finally, some answers!!

    So, if anybody reading my original post can relate to the things I've experienced, you might need tubes too, and if your doctor says no, GET A SECOND OPINION!!! I can't believe after countless trips to my old doctor and 2 trips to an ENT specialist, something could have been done all along. It was evident to this new doctor in literally * 30 seconds* that something should have been done when I was a child, and he's not even an ENT specialist so it was just that obvious I guess.

    I'll post an update once I see the ENT specialist and a solution has been found, whether that involves getting tubes put in or something else!

  • katrina08
    katrina08

    Posted

    Final update from me! I saw an ENT Specialist, and unfortunately, there's no cure for what I have. It is Eustachian Tube Dysfunction, but I guess there are different kinds. Tubes and other treatments only help when there is water in the ear, and what I've got is air pressure rather than water - he said tubes only make it worse and cause extreme pain for those without water in their ears initially. He said there is no cure, and it's just something I'll have to live with forever. Well, at least I know now! Hopefully this thread has been helpful to some of you, best of luck to everyone!

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