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Eustachian Tube Dysfunction

Discussion in 'Support Subforum' started by JV63, Nov 17, 2023.

  1. JV63

    JV63 Peer Supporter

    Hi all. I've dealt with TMS in the past years ago with lower back pain and overcame that. My latest issue is what feels like Eustachian Tube Dysfunction. It started when I got a diagnosis of high blood pressure and was put on medication. In my 60 years of life I've never had to take any medication other than antibiotics for example so this put me into a downward spiral of anxiety and fear of medication and its possible side effects.

    The only thing I'm feeling is congested ears but not in the sense like when you have a cold. They just feel like there is something in there, although there's not, and that they need to be popped all the time but don't always pop. I can hear fine so sounds are not muffled and there is no pain. I also have tinnitus that started at the same time. A constant buzzing that seems to be in the right ear yet the left ear is the one that always feels like it needs to be popped.

    Doc has tried me on different meds with same results in terms of the ears. In my logical mind I would find it hard to believe that I could be "allergic" to everything we've tried especially when I haven't gotten any of the potential common side effects of these meds yet my emotional side can't help but wonder and then I start with the "what if I can't take any medication, then what."

    So last night TMS just popped into my head and now I'm wondering if the stress, anxiety and fear of having to take medication can be the cause of my ear issues? To add, when I'm laying down at night watching TV my ears usually feel fine so then I start to wonder if it's structural, posture, TMJ (my jaw clicks now where I wasn't noticing it before), etc. so I start to go down that rabbit hole.

    Need advice as to whether TMS can manifest in things like eustachian tubes, tinnitus as opposed to muscular like the back? I haven't had to deal with TMS symptoms in quite some time.

    Thanks for reading :)
     
    Roberto M. likes this.
  2. Cactusflower

    Cactusflower Beloved Grand Eagle

    If you do a search on this website (click the magnifying icon above right) you will find many, many queries and successes for both issues. Tinnitus is one of the most common.
     
    Dorado and JV63 like this.
  3. Syl

    Syl Peer Supporter

    Hello @JV63,

    When I read your post I immediately thought of Patulous eustachian tube (PET) because I also have it and it's now progressed a bit more, which makes things more scary. The big difference between PET and ETD (Eustachian tube dysfunction) is that when you lie down it seems to clear up for a while. PET is a rare condition and most doctors never heard of it. At least mine didn't despite my explaining all the symptoms, but he thought I had allergies or ETD. Thank goodness I kept researching until I found the condition I have. Below is some information about PET. Usually, the telltale symptom is "autophony" (see below), but it may not start with this. I started with autophony on and off and I had it for four years, thinking it was just the weather, but recently, after a gigantic bout of stress, it suddenly progressed in terms of symptoms. Having said this, you may not have it. Also, some people have PET, but they're lucky enough not to get autophony, which is a really annoying symptom.

    Anyway, read for yourself and see whether this sounds like you. If so, I suggest you get the diagnosis confirmed with an ENT doctor, although there is no real cure for this condition and ENTs usually advice against surgery unless symptoms become severe, but even so doctors have yet to find a permanent cure. The cause of PET is still unknown, although stress makes the list of possibilities, but to date PET is termed as "idiopathic"--in other words no-one seems to know what causes it. I have a sneaky suspicion that this, too, could be a manifestation of TMS, but I'm not yet sure.

    PATULOUS EUSTACHIAN TUBE

    A patulous Eustachian tube is a medical condition characterized by the abnormal patency (openness) of the Eustachian tube, which connects the middle ear to the back of the nose. Normally, the Eustachian tube remains closed to protect the middle ear from external influences, such as bacteria and air pressure changes. However, in individuals with a patulous Eustachian tube, the tube stays open more than it should.

    Some common symptoms of a patulous Eustachian tube include:

    1. Autophony: The person may hear their own voice, breathing sounds, or other internal sounds inside their head, therefore more loudly than usual.

    2. Hearing one's footsteps: The sound of one's footsteps can be amplified and bothersome.

    3. Ear fullness: Individuals may experience a sensation of fullness or blockage in the ear or popping and other noises.

    4. Fluctuating hearing loss: Hearing may vary and can be affected by factors such as posture and activity.

    5. Tinnitus: Some people may experience ringing or buzzing sounds in the ear. Tinnitus tones can vary and pulsatile tinnitus is also common in PET, whereby one can hear or feel their heatbeat inside their head.
    6. Hyperacusis: is a type of reduced tolerance to sound. People with hyperacusis often find ordinary noises too loud, while loud noises can cause discomfort and pain.

    The exact cause of a patulous Eustachian tube is not always clear, but it may be associated with weight loss, hormonal changes, or certain medical conditions. Treatment options depend on the severity of symptoms and may include lifestyle modifications, such as changes in posture or weight management, as well as medical or surgical interventions in more severe cases.

    It's important for individuals experiencing symptoms suggestive of a patulous Eustachian tube to consult with an ear, nose, and throat (ENT) specialist for a proper diagnosis and appropriate management.

    I am trying to find others on this forum who think may have (or know they have) PET. Right now, I'm feeling very alone :(
     
    Last edited: Nov 29, 2023
    JV63 likes this.
  4. JV63

    JV63 Peer Supporter

    Hi Syl,

    Thanks for the info and sorry you're feeling alone in this :(. I don't believe it's PET as I don't have those symptoms except for tinnitus. Mine's more like the feeling something is in my ear, which there isn't, and the urge to "pop" my ears. Sometimes they pop ok, other times they don't. I don't have that full feeling, muffled sound like when you have a cold. The feeling can even subside at time during the day but I do notice it's much less at night when I'm much more relaxed so I do think symptoms are worse for me when I'm anxious and stressed which is most days now. I need to start noticing the pattern to see if the lessening of symptoms is because of relaxation.

    I just don't know how to live with this at the moment and that of course adds to the stress and anxiety which then makes symptoms worse. I guess people can get used to their "ailments" to the point they don't think about it much. For example I don't pay much attention to the tinnitus because I'm obsessed with the eustachian tube issue. If I listen for it I can hear the buzzing from the tinnitus but I would gladly take that over this other feeling in my ears. I have not suffered any kind of hearing loss and ears are not full of wax or anything like that.

    Wishing you the best on your journey. It's not easy but we can't give up.
     
  5. Syl

    Syl Peer Supporter

    Good to hear from you, JV!

    The information I sent you is more or less a guide for someone who has already developed full-on PET. This is where I'm up to now, but for the first five years (since 2018) I had symptoms very similar to yours (and they are still with me). The only difference, I guess, is the autophony (where I can hear my voice and/or breathing inside my head), but in the past it didn't come on so much as it does now and I thought it was simply my ears popping due to humidity in the air. In any case, let's hope your condition is something easy to eradicate. TMS can do weird and horrid things to us so I'm not surprised it decided to attack the ears as well as pretty much everything else. Let's hope you will soon get rid of this problem.

    I've had tinnitus since 2012, but it didn't really bother me so much either; therefore, I ignored it, but since PET developed I've had the whole Philharmonic orchestra in my ears and I'm sure they're on ice or something because they're totally out of tune! :happy::woot::singing: Wouldn't it be good, however, if we could control the tinnitus tones and choose what we wish to listen to? Mozart, Beethoven, Chopin.... Yes, if I could do this I'd be a very calm person :cat:

    I know we're meant to relax with TMS and not pay attention to the symptoms and reassure our brain that we're safe, etc, but right now I'm still doing battle with a vast number of other TMS conditions--far too many in fact--and PET is the last thing I need. Dr Sarno said that sometimes "fear" is a more potent distraction from repressed rage than the actual physical symptoms. Well, guess what? IT'S WORKING!!!!!!!!!!!!!!!!!!!! :bigtears::arghh::(

    Oh well, meanwhile the battle goes on, and I wish you all the best and hope you will soon be free of your symptoms :)
     
    JV63 likes this.
  6. JV63

    JV63 Peer Supporter

    I agree if it could be music instead of the buzzing, in my case, it would be more relaxing.
     
    Syl likes this.
  7. Lilybluerose

    Lilybluerose Peer Supporter

    I have the same thing. Mine started years ago after coming off of celexa. Ive been to many ENTS over the years, and my hearing/ETD tests always come back normal. I havnt done allergy testing yet but its on the radar. I know exactly what you mean. My ears constantly have pressure and feel like they need to be popped. I do wonder too if this is a TMS thing. I also have tinnitus.
     
  8. JanAtheCPA

    JanAtheCPA Beloved Grand Eagle

    Don't do it. So-called allergies and sensitivities are the result of stress-induced inflammation. You need to go to the real source which is to reduce your stress and calm your nervous system.

    I've posted threads about this, because the science behind it is expanding. Look up inflammation and stress and chronic conditions. I've posted this one before:
    https://www.mayoclinic.org/healthy-lifestyle/stress-management/in-depth/stress/art-20046037 (Chronic stress puts your health at risk)
     
    RustyDaddy, JV63 and Syl like this.
  9. Lilybluerose

    Lilybluerose Peer Supporter

    Ty I will look into this !
     
  10. Syl

    Syl Peer Supporter

    Good advice @JanAtheCPA ! Allergy testing is not very accurate and research proves this. Unfortunately, most doctors tend to use allergy testing when they have no idea what is wrong with their patient. The problem is that a doctor just doesn't have the time to work out what is wrong during a 15-minute consult unless it's something really obvious. Therefore, sending a patient on to test for allergies/intolerances is just passing the buck as is prescribing drugs. Unfortunately, the art of diagnosis has been lost forever (because it is an art!), but these days you only see it in older doctors who are about to retire. It's a shame this skill will be lost forever. I don't know how it is in the US or UK, but in Australia most doctors are hopeless and all they are good at is prescribing drugs that are full of side effects--and we're the guinea pigs.

    FYI @Lilybluerose : Celexa is an SSRI antidepressant and studies have already proven that SSRIs and SNRIs can have a bad effect on the ears.

    I always do my own research before I go to a doctor or specialist. I don't read blogs or anything that does NOT come from a proper scientific study (with all the references of who was involved in the study or a legit medical body, which should be independent and not financed by Big Pharma) , so this is not for everyone. But I have been able to diagnose all my conditions via researching, reaching out to experts (yes, some of them are really helpful and they reply when you email them), and I also use my own intuition. Once I am 90% to around 95% sure I then go and see a specialist only to get a formal diagnosis in writing for my records.

    This past week I went to see the ENT regarding my diagnosis of PET. He is at the top of his field and was amazed I knew so much about the condition; and yes, he confirmed my diagnosis 100%.

    I find it pays to learn as much as we can about our own health before we go to a doctor (unless it's an emergency of course and there is no time to research, etc). I would like to stress, however, that this is not for everybody. Each of us must do what we feel is right for us.
     
  11. JV63

    JV63 Peer Supporter

    I do believe that is the case. I’m stressed and anxious about my situation that when it’s at its height the tinnitus is louder and my Eustachian Tubes bother me more because I’m so hyper focused on the sensations.
     
    RustyDaddy likes this.

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