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Support Group

Posted , 13 users are following.

luke34832
luke34832

Hey Guys,

I posted quite around a month ago that i was nearly cured but then I caught a cold and got congested again but cleared up after 10 days, with minor ETD. Recently it got worse again with minor high pitched tinnitus.I have no idea why but theres nothing to do about it so I'm going to an ENT and requesting a scan soon. Anyways this is not the point of my post. There is a facebook support group for ETd with around 600 people in it. It's great and I've found alot of useful information on there and it also has a success story section. Thought I'd post about it here with the hopes of possibly helping atleast one person with this condition out here.

I hope you all have a merry Christmas and try enjoy this holiday as best as we can.

1 like, 6 replies

6 Replies

  • ann32434
    ann32434 luke34832

    Posted

    Thanks for sharing the information about the Facebook support group!  Also, when I get a cold I immediately use flonase nasal spray, sudafed, and this otovent ballon device and since last year (knock on wood) my ETD has been fine.  The otovent really helps things from clogging up.  Just google for more info.  Merry Christmas!
  • anne05078
    anne05078 luke34832

    Posted

    Hello Luke, Yep, I remember you.  I really think you're wasting your time having a scan

    as it won't show anything up....I think many of us have had one at one time or another.

    This is the problem with catching colds, bad this tmie of year too, as they always congest us

    all and end up having sinus infections that seems so hard to clear.  But the worse thing

    is getting blocked ears having had a cold.  Quit a few people experience ETD having

    a cold, however, if their tubes are working correctly once the congestion has gone,

    they're the lucky ones and the ears clear.  For us, they stay blocked, with inflammation.

    I consider myself so lucky at least at the moment.  Since April this year I found relief

    from my steroid nasule drops, which I now only use when my Eustachian tubes decide

    to block up.  I use once it occurs, give a gentle pop of the ear and I'm fine again for

    almost a week.

    I do hope you soon feel better Luke and wish you a very Merry Christmas too and

    a Happy Healthy 2018

    Kind Regards

    Anne

    • luke34832
      luke34832 anne05078

      Posted

      Hey ann I appreciate your reply but I'm still going to give the scan a chance as I've come to realise that this condition although similar symptoms for everyone has very different ways that it started in. For example if I remember correctly yours was greatly aggravated by Allergies. Personally I do not have allergies and mine are not completely blocked. Personally I believe that mine are due to caught up gunk in the tubes especially in the left ear and only slightly in the right ear. This also leads me to believe why prednisolone has not really worked that well for me. Prednisolone removes inflammation and since mine is due to either trapped mucus/ trapped air ( i suspect its mucus cause all of this hassle started when I blew my nose to hard and felt something shoot up my ear) I do believe that although at first I did have some inflammation most of it is gone now. Another thing which supports my theory on what happened in my ear is that I can equalize pressure without doing the valsalva but my left ear always retracts slightly back) and that I can hear clicking and feel mucus creeping around my ear causing them to tickle and also the crackling which apparently is from airbubbles popping in the mucus.

      Have a great christmas and new year!

  • ashley81307
    ashley81307 luke34832

    Posted

    Thanks for the suggestion. I don’t use FB so I wouldn’t have found it. I hope you can find some answers from the ENT. Merry Christmas 
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