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
Hello Kirsty, Ar you new to the Forum. It's just that I have been posting to a Kirsty for some while.
I agree with what you've said, yes Eustachian Tube Dysfunction is one of the most horrible things
to suffer. However, I think those that are suffering what I think is called PET where the tubes
remain open all the time is more distressing than ETD. One can't try and even pop their ears
with PRT, as they are already open.
Try scrolling back to many posts regarding ETD. I've replied to so many people regarding the
medication I'm currently using that's helped me this past 10 months and I have suffered from
ETD for years and years.
What country do you live in Kirsty ?
Anne
Dear Kirsty,Very sad to hear your story.Many of us here have the same tale & it appears that the doctors actually don't have answers for us.My GP & three other specialists cannot agree whether I have ETD or not & that is despite having three separate scans.Also I've see a couple of quacks who turned out to be useless.The underlying truth appears to be that they don't know or can't find out the cause of the condition & therefore really don't know how to treat it.What we all know is that the pressure is there & continues on a daily basis.Sorry not be able to offer anything more positive.
Hi Anne, it's the same Kirsty! Came back on here to just seem some help and people who understands. I have days where it isn't as bad as others (never gone, but not as bad) do you have those? I never thought something could change my life so much!
Kirsty
Just to hear back from someone who knows how it feels had some comfort to me, so thank you for the reply. I just long for the days before it happened!
Can I ask if you have some days where it's worse than others? I have days where it's a absolutely awful and the pressure and tinnitus makes me dizzy, then other days where it's still there but not quite as debilitating. Don't get my wrong, it unfortunately never goes!
Thanks again to the reply Kirsty x
Hi Kirsty - I empathize with everything you’ve said. I’ve had it for about 7 years now. It came on randomly one day. It got really awful with the stress of the holidays. I saw someone found some relief with a chiropractor, you may have read some of my posts. My chiropractor said I carry all of my stress and tension in my neck completely changing the structure. It can also be caused by dental work where dental massage can help.
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.
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
I read an article on a tinnitus site that said all the sprays exasperate the problem, this has made me feel so worried as I thought they were supposed to be helping. Have you ever heard of this Anne?
Many thanks, Kirsty
I find the best time is when I first get out of bed in the morning & it just feels almost normal.Then after about 10-15 minutes it cuts in & is with me for the rest of the day.I often have to lay down for half an hour if it becomes too intense & that gives me some relief.
I don't cope very well with flashing lights or fast panning on the television.On the upside,I don't have any pain,just pressure,very intense pressure.
It's the pressure that I feel too Michael, I feel like it puts me off balance sometimes as well. Do you ever have that? Just wish to be back to how I was, I want to have fun with my little girls, and sometimes these days it's really taking over. I hope one day they'll be someone who can help me come to terms with it. Sorry to sound so down. It just gets you like that doesn't it?
We're all suffering the same symptoms with ETD....mad in this century, that something
so simple can't be cured for good
It feels so unfair! It's like with tinnitus too, in this day and age is "you have to learn to live with it" all we can expect?!
Dear Kirsty,I do find that it makes me a bit unstable on my feet quite a bit .especially when rising from a chair .Also I find myself getting angry with myself for not being as dexterous as I once was.In addition I
find that objects don't work the way they are supposed to & people are very slow in the uptake.Worst of all is that I know these things are now my fault ,but I'm very unforgiving of myself.
Hello again Kirsty, only just seen your post. I don't think the spray make the tinnitus worse, but stress certainly does.
My tinnitus has been quits low since I've managed to sort out the ETD with the Nasule Drops....never had relief for so long, 10 months now. Being able to smell and taste is brilliant too. So just goes to show the amount of inflammation I had, as soon as that was relieved, I got it back.
Can't wait to see my ENT consultant on the 6th of February to confirm how I'm now using the Nasules is okay....hope he doesn tell me to stop using them.
The problem I get from time to time is a very badly blocked left nostril. I've been using a spray decongestant, however, these shouldn't be used for longer than 3 days....I've been using, mainly before I got to bed for at least a month. If I didn't use it I wouldn't sleep.
Just about to use my Nasal Rinse, to see if that helps.....ears are fine at the moment, now nose blocked. I know which I'd sooner have though....nose every time. At least that is easy to sort out. I seem to get this nasal block every so often....more so in the Winter months. In-doors for many hours and I know it's the house dust that causes my allergies, so nasal passages get swollen, so I can't breath on that left side. So hard to eliminate house dust, no matter how clean we are. I vacume and damp dust my bedroom every day....still doesn't seem to help.
Regards
Anne
Thank you for getting back to me Anne.
I get one side blocked too, mine is my right, and that's the side my eustacian tube is blocked also.
I've been using a nasal spray for seven days now, doctor told me to finish the bottle, then put it on repeat prescription if it's still there! I can't seem to unblock the ear at all now (pop it) and am wondering if that's because of the spray? Really worried I've done irreversible damage? Doctors don't seem to know much about this problem at all.
I agree that my tinnitus is definitely worse in times of stress too.
Kirsty
Hiya, refresh my memory, are you in England, sounds like it when you said about repeat prescription. I think you know that I live in England. I post so many on the Forum I forget which people live in England.
Ask your doctor for the stronger Flixonase Nasule Drops....use for the max of 6 weeks morning and night, they are really good, so hopefully will work for you too. I've now been clear for 10 months, so I'm now only using them as a maintenance....ear or ears block, use drops ones, pop the ear and good to go for another week or so.
Anne
That should read once not ones....typing too quickly
Hi Anne, yep I'm in the U.K
Should I ask at the ent appointment for these? Also are they nasal drops? I have a real anxiety phobia about putting drops in my ear, after using a spray once which made it so much worse!
Thank you for taking the time to reply.
Hi Kirsty,
They don't go into yours ears....nose only. To administer I lie with my head over the
bed and use only one Nasule for both nostril....stay there for a leat 30 seconds so
they can penetrate. Definitely ask for them. they come in a green box. Tell your
consultant how much they've helped me.
Anne
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.