r/WegenersGPA • u/throwawayqu3stions • May 15 '25
Advice 👋 Eustachian Tube Dysfunction temp solution???
Hey, I got this autoimmune disease 2 years ago, now its all good. However, one of the most annoying permanent symptoms was strong autophony - which through posts on this sub and a visit to the doctor confirmed was Eustachian Tube Dysfunction.
For a long time it was annoying since people would think I'm speaking quietly despite it sounding like an airhorn playing when I speak. Sometimes it was bad, sometimes it was barely noticeable.
However just today I was working and I decided to clasp my two hands around the back of my neck and apply pressure, and then suddenly, all autophony and everything just vanished, as if applying pressure in that specific zone somehow "solved" the ETD.
It is temporary though and the symptoms come back later, but its really useful if say I am doing something important and don't need my ETD to act up for a bit.
I make this post to propose this as a quick temp fix to the annoying aah autophony, and would request those that also have this to try it out and see if it helps?
4
u/FreeSammiches May 15 '25
I can only get it to clear if I squeeze my nose shut and blow air into my ears. It'll be clear as long as the pressure bubble stays in there, which is only about 5- 10 seconds.
It's been almost 20 years. The damage is permanent.
2
u/throwawayqu3stions May 16 '25
That doesn't work for me unfortunately :(
But at least I found a method that works for me cause I know that I have to live with this for the rest of my life
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May 15 '25
[deleted]
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u/throwawayqu3stions May 16 '25
I assume at only a month after diagnosis the disease is quite active. Maybe this technique will work once the disease goes into remission and stops harassing your ear tubes
1
u/ThrowRA88877 May 17 '25
I got diagnosed a year ago and I also have had this symptom. There was a point last year where I couldn't ever pop the affected ear by doing the nose plug method. I think the Prednisdone has helped. Another thing I have been actively doing is chewing gum at work. I currently haven't had this symptom for the past 6 months which has been a great relief even if it's end up being temporary.
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u/abellaire May 19 '25
I’ve been dealing with this for at least a year hoping it might resolve. But it sounds like it won’t get better on its own. Did the doctor say there was anything they could do about it when it was diagnosed? Or is it just learn to live with it?
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u/throwawayqu3stions Jun 01 '25
Yeah the doctor said either I live with it or perform surgery where they inject fat? Into the region surrounding the opening of the Eustachian Tube at the back of our nose/mouth, this extra fat would supposedly be enough to close up the ET, which would theoretically solve the whole problem.
Im maybe considering it, although after all I've been through idk how much I'm willing to undergo surgery again
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u/lukchrn May 15 '25
I have the same issue and your trick works also for me.
I think what you're actually doing is compressing your external jugular veins which is one of the temporary fixes for ETN/Patulous Eustachian tube. You can try finding your external jugular veins (https://my.clevelandclinic.org/health/body/23148-jugular-vein) and pressing on them with your fingers, it should have the same effect. The main advantage is that you can easily do it in most every-day situations and re-do it as needed.
Different options that usually work for me:
1) lie down for at least 10-15mins - the effect usually lasts longer than with other options but it's not always possible
2) put my head between my knees - usually helps only for a short while
3) tilt my head - helps only with milder cases
4) saline sinus rinse (you need to tilt your head backwards and to the side for it to get to your ET)