Eustacian Tube Dysfunction! Argh!!!!
Posted , 7 users are following.
Hi! I've been suffering for around about a year now, and my goodness has this got me down. It's been life changing, and I'm desperate to get my life back! I used to enjoy so many things, travelling being one of them. Now due to my ear and the pressure that happen when I travel (even the smallest distances) I avoid it and that's really upsetting me. I just want to be me again!
I have found a doctor who is finally referring me to ENT, but has warned me that ETD is a very tricky thing to cure.
I'm here to ask for help in coping, does anyone have any advice on how they deal with it? I've became so worried about it that it's become an obsession almost. Any positive stories or ways to deal with it day to day would be amazing, and so appreciated.
Many thanks, Kirsty x
1 like, 49 replies
ashley81307 kirsty12709
Posted
Hang in there. There’s many of us who know how you feel. I was in the dumps so badly exactly a month ago that I thought about ending everything. It’s very distressing, like you, I didn’t travel because of it. Now I can tolerate it after a chiropractor adjustment of my neck and stretching. Good luck.
kirsty12709 ashley81307
Posted
I'm so sorry you've been in such a bad way too. It really is debilitating isn't it? I feel like my life has changed completely because of it, I wish I could just get in a car without having a panic attack before doing it. It really gets to me sometimes.
I long to one day just be able to cope with it and do what I used to love!
I have to keep going for my kids but I want to be happy go lucky me again that would go anywhere! Sorry to go on, thank you for your reply, Kirsty x
ann1013 kirsty12709
Posted
I have found that my ears act up the most when I'm anxious or stressed.
My right ear always acts up when I'm in the car. I never could figure out why and thought maybe the car sealed up too tight and it was the pressure. I tried cracking the windows and it didn't help. I finally figured out what the issue was for me. I was in a horrific car wreck several years ago that involved a fatality and a lot of injuries. I have never been comfortable in a car since that wreck and a counselor told me I had PTSD from that accident. My TMD is muscular in nature. When I get stressed, nervous or upset my muscles tighten up. When my muscles tighten my TMD acts up and causes my ear to act up. I've found if I take an anxiety pill before taking a longer trip my ear doesn't act up as much.
I just need to figure out how to never get stressed! Like that is possible. We usually travel about 10 hours for vacation. I'm already dreading it.
kirsty12709 ann1013
Posted
This is exactly like me Anne. Mine really play up when I'm in the car. I'm so sorry you went through what you did. Have you ever had help for it?
We go to Scotland to visit my partner (6-7 hour journey) and I'm an absolute mess beforehand, and in the car, shaking and sweating because I know what will happen to my ear.
I'd love to just stop being so anxious about it too, it's had a massive impact on my life and I find it exhausting! I've asked for counselling but there's just none available and I can't afford private.
Do you find the anxiety med helps you to travel?
Kirsty
ann1013 kirsty12709
Posted
‘I went to counseling for a while but didn’t feel like it was helping.
‘I’m better when I’m driving. I’m not a good passenger.
kirsty12709 ann1013
Posted
Kirsty x
dymaz ann1013
Posted
How long have you been taking Klonopin, at what time do you take it and what symptoms does it help alleviate?
Thank you
anne05078 kirsty12709
Posted
Kirsty, Sometimes over night the eustachian tubes manage to drain, but not completely.....so they feel
good first thing, then evidently still mucus in the tubes, so they stick them back up again That's the only
reason I can think this happens. I know you have ask this question to the other Ann, but thought this idea maybe the reason.
Anne
kirsty12709 anne05078
Posted
So sorry, this question was meant for you, I thought I'd just been spelling your name wrong all this time. Sorry.
So in your opinion it will be mucus still stuck there? I always thought it was air trapped as need to pop it (which it still isn't going) I'm learning all the time about this!
Thank you for the reply x
anne05078 kirsty12709
Posted
Not sure ears pop when it's air Kirsty. That's a different complaint, that I think is called PET.....when the tubes remain open all the time. Far worse in my opinion than ETD....at least we sometimes manage to be able to pop ears when mucus is present. Air is so different and has to be equalised. I've had PET a few times and comes on out of the blue, when I'm not suffering ETD. Its' horrible, but soon seems to go away, thank goodness. I really feel sorry for the people who suffer from that.
No worries about spelling. People are always leaving off the e on my name. I sometimes haven't read your messages when I've seen them for the other Ann.
Best wishes to you Kirsty and don't forget to let me know when you've
been prescribed what I've recommended.
Anne
kirsty12709 anne05078
Posted
Thank you Anne, how would I know if I had PET? Sorry to bombard you with questions, I just don't really know what to do. I leave you to your weekend 😊
anne05078 kirsty12709
Posted
Don't worry about that Kirsty, always here to help when possible.
Of course I don't know how you're feeling, but PET, where the
tubes are permanently open is the worse thing. You can hear
your heart beating and your voice sounds funny, as you can hear
yourself speaking. With ETD is a blocked, full feeling, but you
would be able to pop them....PET you can't.
Google PET and have a read about it. Patulous something.
Are you getting the Nasule Drops....for Nose Only. I had to
laugh when you thought they had to go in your ears. Anything
that goes up the nose gets into the Eustachian Tubes behind
the eardrum, not in front of it.
Anne
anne05078
Posted
Anne
anne05078
Posted
Me again. I've just looked it up and all that's recommended is the steroid nasal sprays.
If your ears are blocked and the spray or drops aren't working, get your ENT consultant
to make a tiny incision in your eardrum so he suction the mucus out.
I've had this procedure done on several occasions, but haven't needed a hole to be made,
as the pressure behind my eardrum perforated it. However, the mucus was so thick and
sticky it would drain completely and still felt blocked, so my consultant microsuctioned
it all out and everything was fine again until my sinus issues made it all start up again.
Usually getting only a few weeks relief from it. Until of course I used the Nasules and
now only have to use them when my ears block, and that is now approx 7 days. Feel
so very lucky that I seem to have mine under control
My problems of Sinus and allergies definitely cause my ETD. People on the Forum
talking about it possibly being TMJ, or even neck or back problems....mine isn't !!
Anne
kirsty12709 anne05078
Posted
Haha! I do talk some nonsense I really do, so clueless about this stuff.
I think the problem is I've had a nasty cold too and my nose is blocked on one side (as we talked about before) so possibly that's the problem this time.
Did it cause you problems when you had yours drained? Sounds a bit scary, but I'm a wimp with my ears!
Thank you again, Kirsty
anne05078 kirsty12709
Posted
No problems whatsoever, I was just so glad to get the cleared. It actually feels quite nice
and not at all painful, just quite loud and you have to keep perfectly still.
What I've been through with my ears over the years I'm so used to it now. Did you know
that I contracted Peumococcal Bacterial Meningitis several years ago attributed to ETD.
My ears were blocked fo so long, the mucus in the tubes turbed bacterial, crossing the
blood/brain barrier and bingo it got me. seriously ill in hospital for 2 weeks and months
at home getting better. Sadly, due to the time lapse before the hospital realised I had
meningitis, I lost the sight in my left eye and a little deaf in my right ear. Also suffer
dizziness when lying on my right side.....not a nice experience at all. That's why I try
and recommend anyone that suffers ETD and gets an earache with it, to quickly get
on antibiotics to protect themselves. I'm not the only person that's contracted Meningitis
caused by ETD. So doctors should take this condition very seriously....my GP missed
mine.
Anne
ann1013 dymaz
Posted
ann1013 kirsty12709
Posted
I also have allergies with issues and my bedroom is pet and allergen free. When I went out into the other parts of the house I think it caused an allergy flare up in my ears.
I don’t have typical allergy symptoms. Just my ears.
ann1013 anne05078
Posted
I am at a point where I can’t complain too much. It took a lot of physical therapy, intraoral massage, splint therapy, dry needling, allergy medications and now allergy shots to get there.
My ENT said if they aren’t cleared up completely after a year of allergy shots we can try the balloon dilation but they are tolerable so I doubt I will try for fear of making it worse.