Ear clogged

[Texastatoogal]

My ear has been clogged and hurting for a couple of days. This happened a few weeks ago but I never went to dr because it cleared up. Is this wegener's related or just a ear ache? Anyone have the same issue?

[Rose]

Difficult to say...it could be both but my bet is that it is WG related. Best to see to your doctor.

Rose

[Dirty Don]

I have a 'stuck open' Eustachian tube. It creates some similar problems cuz, at times, it appears to 'pop' and I realize it's 'felt' shut but that's impossible, so I listen to the 'ocean' a lot. My ears and nasal passages 'feel' clogged, but they're not. Very weird...I'd have it checked if it persists...by an ENT familiar with WG so he/she knows what they are looking at...some don't recognize WG. Best to you.

[annekat]

It sounds like WG to me, and I'd have it looked at. My ears have gone through all kinds of changes since having WG. Bad, better, then worse, then better and worse again. They need to be looked at regularly, especially if they are acting up in any way.

[B_in_Florida]

Yeah, I've also had hearing/ear problems in the last few months, but unlike yours, nothing ever cleared up by itself. From what I can tell it's probably WG related, after reading what all the people on here said (on the message boards, not your thread) and also the WG symptoms listed by the Mayo clinic again. I had some discomfort, but not really pain. I think what I read in the Dr.'s office (learning aids on wall) was that if there is pain, you may have an ear infection. If it is an infection, I highly doubt it will clear up without some antibiotics/other medication. I haven't dealt with ear problems as long as others on here, but I recommend seeing a doctor, I highly doubt it will ever get better on its own.

When you say your ears are clogged, does that also mean that you have trouble hearing, or they just feel clogged and uncomfortable?

[annekat]

When you say your ears are clogged, does that also mean that you have trouble hearing, or they just feel clogged and uncomfortable? For me it can be either or both, and has been, over the 6 years since I started having ear problems, which was 2.5 years before being dx'ed with WG. My hearing loss started after a big infection and then got better for awhile. Then it got worse again. I ended up with hearing aids, which I never expect not to need, but some people can avoid this with proper treatment for WG soon enough. Some hearing will get back to normal, once the inflammation in the e-tubes is brought under control and they start functioning normally again. Some people's never do. In my case, that is probably true, plus in one of my ears, the eardrum is eroded away, as are the little bones behind it. But I can still hear in that ear with a hearing aid. I just have to be careful of infection getting in through the outer ear. As for the the full and clogged, uncomfortable feeling, that can happen with or without hearing loss. It can come and go. It can happen more with allergies or when under stress. Ear issues can also cause dizziness and vertigo. ENTs are not always even sure what is causing it, exactly. But it is all Wegs related, most likely, I think.... so getting some attention for it is the best thing if you don't want to end up with permanent damage and hearing loss.

In the early stages, before I knew I had WG, my ENT had me use pseudoephedrine, the restricted OTC decongestant (the one they make meth out of), to open up my ears when they were clogged. It took a few days or more, but it worked. It is a nasty drug that can be hard to tolerate, but I just thought I'd mention it. I still take it fairly often to keep things as open as possible and I also found it to help with dizziness and vertigo when I was having that problem. I take one or two 60mg. doses per day when I'm taking it.

[Texastatoogal]

I went to my primary dr, she said I have very small Eustachian tubes. I have fluid in my right ear, the one causing me problems. She didn't think it was wegener's related. She is the one who diagnosed my wg. But she is not a expert in the field. How would one know if it is?

[annekat]

I went to my primary dr, she said I have very small Eustachian tubes. I have fluid in my right ear, the one causing me problems. She didn't think it was wegener's related. She is the one who diagnosed my wg. But she is not a expert in the field. How would one know if it is? Good question. Did you have ear problems before you think you ever had Wegs? Small e-tubes could be a factor, for sure. Are you in remission or otherwise having few symptoms except for this ear thing? Could be a separate issue, but it just sounds so typical for WG. I don't really know how one would tell if it is or it isn't. Maybe someone else can shed some light.

[Texastatoogal]

I have been very lucky, I was diagnosed last November. I had the purpura spots all over my legs and abdomen. I have subglottic stenosis that was diagnosed a couple of years before that. Other than that I do not have any other symptoms.

[annekat]

I have been very lucky, I was diagnosed last November. I had the purpura spots all over my legs and abdomen. I have subglottic stenosis that was diagnosed a couple of years before that. Other than that I do not have any other symptoms. Well, then maybe the ear thing isn't related. But it is always possible to have flares or relapses with completely different symptoms than you ever had before. So it sounds like you are keeping an eye on it and I'm sure you'll get it checked out if it gets worse or doesn't go away. You could always go to an ENT instead of your GP and see what he or she has to say about the small e-tubes and all that. But I'd probably wait until you really think it is some new and possibly serious development. It shouldn't be hard to tell, you might have pain along with the full feeling, or some discharge from your ears if the pressure causes a perforation in the drum, as happened with me in both ears. We all know our own bodies best and you'll probably know if something is really not right.

[Jaypfei]

I had issues a couple of weeks ago. I had cold like symptoms and every time I blew my nose I would have sharp pain in my left ear. Of course I was worried and wondering if the disease was returning. I saw Pulmonologist this past Monday and mentioned this to him. I told him that it must have been a sinus cold because the ear pain had stopped. He looked into my ear and informed me that the sharp pain was due to an ear tube/grommet that was still hanging on to the wall of the ear drum. I was astonished because I had thought that both the tubes had already fallen out. I had no idea. This tube was a pair that was installed January 2013!

[Ruotsi1]

I have had ear issues (clogging, infections, pain, RTX) since prior to dx. My ENT to this day denies my ear issues have anything to do with Wegs...very annoying, because I know my ears/sinuses were my first symptoms. I have had tubes put in multiple times (they kept falling out). I am actually scheduled to havr them removed on Tuesday. Since starting treatment for Wegs last July I have had minimal issues with my ears. I am only having them taken out because they have been in 2.5 years and they need to be removed. If symptoms return I will have the, replaced.

[annekat]

I have had ear issues (clogging, infections, pain, RTX) since prior to dx. My ENT to this day denies my ear issues have anything to do with Wegs...very annoying, because I know my ears/sinuses were my first symptoms. I have had tubes put in multiple times (they kept falling out). I am actually scheduled to havr them removed on Tuesday. Since starting treatment for Wegs last July I have had minimal issues with my ears. I am only having them taken out because they have been in 2.5 years and they need to be removed. If symptoms return I will have the, replaced. Your ENT needs to get educated about Wegs. At least mine acknowledged right away at time of dx in 2011 that all my ear and sinus issues, starting with a big ear infection in 2008 that blew holes in both eardrums, were actually Wegs symptoms all along. He has always been very apologetic for not considering Wegs a lot earlier, which could have saved my nose from saddling, my sinus bones from eroding, and my hearing as well. It seems to me the ENT is a very important part of the medical team for a great many of us, and they need to be educated on all the possibilities! I can understand your feeling annoyed.

[MikeG-2012]

... It seems to me the ENT is a very important part of the medical team for a great many of us, and they need to be educated on all the possibilities!

A good ENT will make your journey with this disease a lot better. Mine is AWESOME and I wish everyone had one like him!

As to your ENT denying that its Wegs, time to find a new one that will KNOW that it IS THE WEGS!!

[annekat]

A good ENT will make your journey with this disease a lot better. Mine is AWESOME and I wish everyone had one like him!

As to your ENT denying that its Wegs, time to find a new one that will KNOW that it IS THE WEGS!! I wish we did, too, Mike! I think mine is well respected in the community as a good ENT, but he fell short in my case, until things got a lot worse. I still think he's a good doc, but I'd like someone with more WG/vasculitis experience.