Ears

[Brooke]

I have been getting mild headaches for the past week or so. It seems to be worse at night time. I think it is from lying down to go to sleep. My ears feel full and a little weird, don't know how to explain it. I am not sure if it is my sinuses draining or what. I do better during the day at work when I am sitting upright., however today my ears still feel full.
Do any of you have this going on? I put a call in to my doctor.

[Jack]

Yes, blocked eustation tubes caused by Wegener's. Quite a few people on here suffer from it causing deafness, tinitus and ear ache (including myself). I'm not sure that anyone has discovered a cure, mine seems to respond to increased steroids, but I don't want to do that.

[Brooke]

Thank you Jack. Does yours seem worse when you lay down?

[Jack]

At one time, I used to be able to improve things by putting my head to one side, so it was affected by my position. When I was trying to reduce my steroids it got really bad and I had ear ache when I went to bed, but it is about the same all the time at the moment.

[LilyPony]

I had the same problem horribly last summer but of course had no idea it was the wegs causing it! What helped, not cured, just temporarily helped, was to close my mouth and pinch my nose and blow hard as though I were trying to blow my nose but it was too stuffy to get air out. It hurt the ear for a second then followed by an amazing relief as the pressure was eased for a little while it made me comfortable sometimes for several hours. After about a week on prednisone it was better. It hasn't returned except for some underwater sounds now and then, no more pain. I hesitate to tell you to do that because I don't know if it can cause damage to "sick" ears. It is a techniques used by swimmers with bad ears to clear their tubes out.

[Jack]

Mine used to respond to that too, but they are past that point now.

[Brooke]

Thanks, yes I have tried that. Doesn't seem to help too much. Thanks for the suggestion though :) It does seem to feel like I am underwater at times. Any headaches with you guys?

[Jack]

No. I don't get head aches.

[Sangye]

Sangye getting queasy.... Please don't use the "pinch your nose and blow hard" method of clearing your ears. It's an excellent way to damage your eustachian tube (which is a little oh-so-tiny tube!) and injure your eardrum.

You might try stroking the back sides of your throat (tonsils) a few times. This drains the eustachian tubes. I've only had the full ears accompanied by throat inflammation and lesions, so this was not something I could try.

A home remedy that might work is to bake half an onion until it "sweats." Wrap it in a couple wet washcloths and hold it against/close to your ear. It will alleviate ear pain if you have it, while the heat and anti-inflammatory properties of the onion help relieve pressure inside the ear.

[elephant]

Right now my ears are clogged. I have a cold going on and sinus drip to the back of my throat! Yuk! All of us have this bad nasty cold. I have to stay on Prednisone 10 mg for my ears and sinuses. I went down to 5 mg of Prednisone and it didn't work. Sinuses and ears suffered!

[Sangye]

Oh Elephant, I wish I could help you. I don't know how you do it when your whole family is sick at the same time. And having to increase the pred again.... Ugh. I hope at least it brings you some relief quickly.

[elephant]

Thanks Sangye, I will survive! I will see a ENT this week. Maybe get some answers. If the kids are not better by wed I am calling the pediatrician.

[Brooke]

Thanks Sangye, I might have to try that. Where did you hear about that one?

[Sangye]

The onion remedy? One of my naturopath friends told me about it once.

When I first went on Cellcept, I had a real problem with bizarre throat infections for the first 3-4 months. It looked and felt like strep throat but never cultured as one or responded to antibiotics. Anyway, my tonsils would get so swollen that it would close off my eustachian tube. Then my ear wouldn't drain. So painful, like having a knitting needle in my ear!

[jola57]

I'm like Jack, for a while I was able to clear my ears but it lasted a short time only, now both are blocked and I have tinitus. Nothing happens when I yawn but for just a split second when i burp (yes burp) my ears clear somewhat. So they seem to be OK just either puffed up inside or filled with fluid. Normally no headaches just once in a while. But my migrane auras are back, fortunately without the pain.

[DEE]

at the moment ive got constant headache and earache which is worse at night or when ive been laid flat . the only thing ive done different is lower preds like consult asked me to do but the buzzing noise drives me mad . ive got an appointment with gp on thurs am will have to ask him

[jola57]

elephant, sorry you have to up the pred again. I hope you and your family get better soon.

[jola57]

Sangye, how are you doing?

[elephant]

The ringing in the ears could be the fluid built up too. Mine are ringing constantly, my hearing test was not bad, it changed a little bit from last year. No hearing aids yet.
Jolanta- is it hard for you to hear with those clogged ears?

[snooz23]

The congested hearing, loss and tinnitus is how my wegs presented itself (no sinus, nose involvement). I went to bed on a Fri., woke up Sat. not hearing so well, continued on like this for a while until 2 months into it I landed in the hospital for 3 days with almost complete loss in both ears. They were able to save some of it and I now have hearing aids in both ears (one much worse than the other) and I also suffer from terrible tinnitus. I am now tapered down to 10mg of pred. and have been holding steady here for a bit while they try to figure out if I need a treatment change. My ears are getting worse and I have a lot of drainage each morning. I cannot tell you, well actually you all know, how completely exhausted I am from all the appts., phone calls, constant monitoring. At this point my ears and everything else are causing so much discomfort I am almost looking forward to going back up on pred. because this simply cannot be my new normal.

[elephant]

What does Carol Langford suggest? A WG ENT? I am in the same boat. That is why I had to increase my prednisone. My ears were hurting and felt full and it helped ( the increased prednisone), but wow still the ringing is so insane!
Snooz23 what are you currently on ( medicine). Any other symptoms?

[JanW]

My wegs ENT asked a lot of questions about my ears (ringing, congestion, pain). So far, I've had none of that. Also a lot of questions about my eyes (tearing, blurring) even though that's not his area. My rheumo was able to give me the name of an eye guy who deals with autoimmune diseases though, which is the good thing about living close to a big city. I feel for you all with the ear problems -- I once made the mistake of trying to clean my ears with one of those Murine kits and the underwater feeling was so bad that I was at the urgent care the next day (where an ear cleaning took care of it). It has got to be distressing to live like that.

[snooz23]

I also see a wgs ENT specialist at Cleveland Clinic, Dr. Weber. Unfortunately not a lot of options to "fix" anything just maintain and keep infection away. I have perforations in both eardrums which is oddly enough better for my wegs...the drainage has a way to get out. I currently take 25mg./wk of meth., 10mg. pred., folic acid and bacterim 3xweek. I just had a bronchoscopy? last week because Dr. Langford is considering changing my treatment. A nodule in my lung is growing rather than shrinking (however it is at a very slow pace). I think they want to look all options before switching because obviously my alternatives are much more toxic and damaging and I have had some progress, however I would not consider myself in any kind of remission--at least I hope not?? Actually I may pose that as a new thread....how much better do you actually feel in remission vs. a flare? Seems such a mystery to me.

[Sangye]

Great idea for a new thread. I'd like to know that, too.

[fester500]

I've been getting some problems with my ears recently, too. My right-hand ear drum has a 'dull surface'. Has anybody else had this? From the tests I had done, my hearing is fine and I have no fluid build-up, so the doctors are a little puzzled. I also get pain and stuffiness in that ear. Sinus CT is normal.

I was wondering really if the doctors have been too quick to rule out fluid in the ear, just because the test is normal!

Thanks!

[elephant]

You could have some fluid in there, but the ENT can't tell unless it is pretty profound. That is what I have been told. If it gets bad they can see on a CT scan where it actually gets into the mastoid cells. This is what I had two years ago. I probably still have it going on, but less.
Snooz, thanks for the information about the ENT. I will call today and see if I can see the ENT soon. Snooz, hopefully they will figure it out soon. Sounds like you are in good hands and you will get great care.