Eustacian Tube Dysfunction! Argh!!!!

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 

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 

Can I ask a question Ann? Why do you think my ears would be okay for a few minutes (not great but okay) on waking, then they get bad again as soon as I start walking around? Any ideas? 

Kirsty x 

Hi Ann1013,

How long have you been taking Klonopin, at what time do you take it and what  symptoms does it help alleviate?

Thank you

 

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

 

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

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

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 😊

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

PET = Patulous Eustachian Tube.

Anne

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

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 

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

I’ve been taking it on and off for a year but daily since last September.  It helps with anxiety and muscle tightness.  I take it first thing in the morning and more during the day if needed but I rarely take more. 

Mine have always been ok upon waking but my anxiety would kick in wondering how long it would last and dreading the day.  I think that made my muscles tighten up and everything got worse.   

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. 

And I am lucky enough to have both allergies and TMD.  I think the TMD part is mostly under control for the moment and It’s allergies causing the problems now.    I am taking allergy shots but wasn’t seeing as much improvement as I had hoped. The allergist told me that was normal because we are in mold season and the molds are the hardest to get rid of their allergy shots. He Said that hopefully by spring I will be a lot better.  

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.