Hearing Problems

[B_in_Florida]

A couple month back I started having hearing problems on one of my ears. It became kind of muffled and sometimes I would hear ringing in it. Sometimes it's more muffled than other times. Around the same time this started the same side of my nose started getting stuffed a lot and if I wore glasses it would sometimes hurt on that side a little after wearing them for a while.

Today I woke up and my other ear didn't seem all right, so I tried clearing it by equalizing my ears the way divers do: squeeze nose shut, then gently blow into it - it should allow the ear to match the surrounding atmospheric pressure (it's never caused a problem before). Now I have a problem with this ear being muffled too and feeling like it's stuffed with something. I know the best thing to do is to talk to my doctor about it, but I can't afford a (expensive) visit at this time because of my work situation, and I already owe him money that I cannot pay back at this time.

Has anyone else experienced hearing problems? Is this a known problem with WG?? I know it's not age related because I'm way too young for age related hearing problems.

[Dirty Don]

Again, welcome B. Most of us with WG have had some kind of sinus/ear/lung issue, if not all of them! My sinus damage was an expanded E tube which docs can't fix, along with the tinnitus you seem to be 'hearing'. My left ear seems more damaged for hearing than my right where the E tube is stuck. It seems pretty common. It does indicate an active WG at times, but nasal biopsies aren't always a surety. Do you have WG dxed officially already? Best to you, hang tough.

[B_in_Florida]

Do you have WG dxed officially already?


I don't know what this means.

[B_in_Florida]

DX = Diagnosed??

I was diagnosed with it in 2005. I started getting treated relatively early (about 2 1/2 mo. from the time symptoms first started) and it has been in remission since around the end of 2006/2007. With the exception of my stamina probably being a little less than regular disease-free people, I've been able to live relatively WG-free up until about now (from what it seems).

[Dirty Don]

Since you are dxed, I assume you are on the 'fun' drugs. Your description sounds a bit like a flare, but could be simpler. Tinnitus doesn't have much to do with WG except that many of us get it also. Sorry on the terminology...after a while on here one gets used to shortcutting words...oops. You're almost at a 'magic' marker time of 10 years. There are stats that support about a 10 year remission for many people...statistically, they become more susceptible once more to a flare. Wish those peeps messing with the AI cell changing thingy research would get it in gear...LOL! I've been told by both my rheumy and pulmy that until a better drug protocol is developed or whatever, I will be susceptible, especially again at about 10 years...jeez.

[B_in_Florida]

Since you are dxed, I assume you are on the 'fun' drugs.

I'm actually not on any drugs right now. The drugs I was on were: Prednisone and Cytoxan - think that was it, I don't remember another. I started taking the drugs erratically later on into my treatment, I didn't always take them when I was supposed to (there were days when I missed taking the drugs) - possibly because they tasted like crap, their directions on how they were supposed to be taken (ie. take 30 minutes after/before eating, with milk, etc.), or I simply didn't think about them as much as my symptoms decreased. I think that's when I was taken off them because it was considered "self-medicating." My condition was monitored for a bit while off the drugs and since it didn't seem to change I was kept off them.


Since people are probably just going to assume what symptoms I had if I don't mention them, I will go over them: It started off with a cough. I thought it was just a cold/flu, but after two bottles of cough syrup and two weeks it still didn't get any better. I tried exercise and noticed my stamina was EXTREMELY low: I had trouble doing any pull-ups, and when I exerted myself the cough just got worse. I got muscle pain(not from exercise, just daily tasks) and arthritis: un-bending my legs and arms became very painful (ie. from a seated position). It was less painful to stand or lie down, and it got to the point where going down steps was difficult and painful, and it was too painful to drive my stick-shift car. If I wanted to go anywhere, I had to be driven. I had loss of strength: going up stairs required a lot of exertion, I remember almost crawling up the steps in my house one day when coming home from class (I think the symptoms started at or near the end of the semester, so I didn't need to deal much with school); night sweats: I would go to sleep, then wake up in the middle of the night, sheets drenched in sweat, nauseous from the smell, and freezing. As it went on the chronic cough just became stronger and more often. I had ear and throat pain and every time I coughed I would feel pain in my throat and ears. I couldn't eat hard things like crackers, because eating them became painful. I became drained in the middle of the day very often, although I don't remember when that started. After about 1 month I went to a holistic doctor who said I had some kind of nutrient deficiency, and was prescribed various minerals and some type of fatty oil(to ingest) for the joints. After 1 additional month of pain due to that holistic quack, I went to a real doctor who told me I needed to go to a hospital right away after looking at a chest X-ray. First I got to freeze my ass off in the ER for a long time, then I was admitted. They initially thought I had pneumonia, and also went over other possibilities like STDs. After being in the hospital and tested for for 2+ weeks (which felt like an eternity), after having talked to about 5 doctors, thinking and feeling like I was dying, I finally got a diagnosis. I think the reason I didn't have as many symptoms as some people, or required as much medication, was probably because the diagnosis was made early on and I was 21 at the time.

After I was released from the hospital I never joined any group because I didn't want to be part of any "self-pity" group, wallowing in & perpetuating despair with others - that's how I saw support groups. I wanted to live my life as WG-free as possible, not even thinking about it.... but I guess times like these, WG likes to slap me in the face and say "No, we won't let you do that." To me, talking to a support group was just giving WG more a part in my life than it needed to have, kind of like additional validation and power over my life or emotions. I still didn't come here for sympathy/empathy or emotional support, but to get answers from other people who might be experiencing what I am.

I was just going to go over my symptoms, but I see it also kind of turned into my "story."

[Dirty Don]

Well done, well stated...now you've opened a door for here. Peeps don't generally wallow over themselves or each other in here...some are a bit blunt, and some have exceedingly knowledgable understandings of WG, some are scared, some not so much...varies in here. Keep watching, reading, and using as you see fit. Your story is very familiar for many of us, perhaps, thru the sharing of experiences, we can all learn more than we ever expected or wanted in order to make each day better than yesterday. Keep on keepin on...

[Pete]

The best advice I've gotten about living with this dumb disease so far came from the doc who diagnosed me: "Take your meds as directed and live your life to the fullest extent possible." Seems to be working OK so far.

[1mzorro]

I had some of the same problems with hearing and nose. It started with my left ear feeling muffled and then it went to the right ear being muffled as well. I had to be within 4 feet of someone to hear what they were saying. The next thing to happen was my nose was plugged up as well and all that junk inside was almost like concrete lining it. Then I lost my sense of smell and taste. I was like this for about a year. After seeing my ENT found that my Eustachian tubes were not functioning properly which led to me getting frequent infections. They put tubes in my ears and it was an instant relief and I could hear again.I also had balloon sinoplasty sugery to clear my sinuses and help them drain better. The other stuff went away by sticking with my meds and keeping up with my nasal rinses twice a day.

I know what your going through and wish you the best.

[Alias]

When I first started getting sick the ear symptoms were the first to show up, completely out of the blue. I also had nasal issues to the point where it hurt to wear my glasses. By the time I was diagnosed the inside of my nasal passages were quite a mess and I now have permanent hearing impairment in one ear. (Just got my hearing aid this week, which is a big improvement but will take some getting used to.) To answer your question, the symptoms you describe are classic presenting symptoms for WG, so should not be ignored. I also lost my sense of smell. It returned after treatment, but I will always be doing the nasal rinses to deal with the damage that was done.

[Bing505z]

I had the muffled right ear. I still have tubes in, but I am thrilled to say finally that ear is back to normal.

[Victoriaitsnosecret]

I was diagnosed 1 1/2 years ago. Limited disease. No kidney involvement. My nose was always the worse. I'm just off meds now but probably about to go back on due to repeating symptoms. Sinuses are a mess. Everything else seems ok. For the past 2 weeks my ears have felt blocked. Some pain at times. I saw the ENT he said they looked fine, hey could be suffering since he sinuses are so inflamed. Anyone else had this?
Also I have lots of joint pain and my Rhumetologist doesn't seem to make much of it like he doesn't think it's connected. It's listed as a symptom online. What are other peoples experience with pain?


😃 victoria

[Dirty Don]

My pain was roaming and pinpoint. One day my wrist would hurt, the next it was my ankle...always in the joints, duh. It was never excruciating, kinda like bumping the coffee table with a shin, hurt then lessened, then moved on...weird.

[renidrag]

I had to go back on Pred last month after being in pain for quite some time. Just like DD's. I did not have ear involvement however I do have terrible tinnitus that screams at me all day and night.
Dale

[gilders]

B_in_Florida, the hearing issues are common. I have tinnitus and left ear is badly damaged (i.e. it's deaf enough for me to require an hearing aid).
The symptoms you're suffering from would not signify a flare or relapse with ME because I suffer from those symptoms daily even when in remission.
BUT the fact that this is a NEW symptom for you, would make me more concerned. It's easy for me to say get it checked out because I'm not the one paying for your check up. It could be an unrelated ear/sinus issue/infection, but if it doesn't settle down soon or especially if any other WG type symptoms appear, get yourself checked up. Waiting to treat a WG flare could end up being far more costly in the long run than to continuously ignore it.

[B_in_Florida]

Thank you for all the replies, I didn't realize there were this many replies, I just saw one or two additional after my last reply. I won't necessarily address all replies individually since they're mostly the same, but I do have thoughts about them. It's still important to me that everyone with these symptoms replied about how it effects their own condition.

Yes, I guess what I have is tinnitus, I had it in the past before, but wasn't sure if this was exactly what it was. When I had it it was usually only for short amounts of time, though I had it once for 2 weeks straight when I first got it - the constant ringing that I couldn't get away from nearly drove me insane.

Now I am having hearing problems on the right ear almost as much as on the left. Can barely hear anything except loud or high pitched noises. Everything is muffled. My hearing quality in my right ear varies from how I angle my head(but not much). If I tilt it to the right shoulder it seems to get slightly better and feel a little less stuffed. Right now, as I'm writing this, the ringing is pretty strong - it's been on-and-off over the last few days at different times of the day.

My nose gets stuffed all the time, and even when I blow my nose it seems to stay stuffed a lot. My left side of my nose seems to be bleeding a little since there's usually a little blood in the mucus. My nose sometimes clears up a bit mysteriously on its own and I can breathe better. When I wake up in the morning, the left side of my nose is frequently blocked by a bit of hardened stone-like mucus like someone mentioned near the opening (geez, if I told this to anyone in public it would disgust and turn them off so fast!). It also seems to make me sneeze frequently at times - probably the nose trying to clear itself up. I also cough randomly now and then, but that would be more lung related.

I'd love to be able to be able to take some medications and have this all go away. I'm supposed to be DONE with this damn disease! It kind of terrifies me to think that this hearing may be permanent and what else these symptoms could foreshadow.

I'm not sure if I addressed everything. Not sure if I should be going to a Pulmonologist or some other type of doctor about this, so far I've only been seeing a Pulmonologist for check-ups.

[Velma]

I had bi-lateral mastoid-ectomies due to the little bones in my ears being attacked by WG. I lost hearing and never got it back.. I wear hearing aids now and have since age 25. Have them check for issues and flares in the ears. If you notice your eyebrows suddenly quit moving up and down then get to a dr asap. My eye brow quit responding to me trying to move it and the infection had moved onto my brain. Please do not let this go. Make some dr. listen to you before it gets too bad.

[Alias]

The crusting/congestion with bleeding along with your ear symptoms may be a sign of active disease. The description of your ear and nasal symptoms sounds very familiar to me, since it is still less than a year ago that I started to have those very same problems, eventually leading to diagnosis and effective treatment. If I understand correctly, you are not on any meds and have not recently seen a doctor? You should not be waiting to see if this clears on its own because if this is a relapse or extension of disease waiting will only make things worse.

[gilders]

Hi again B_in_Florida.
In my first reply I said if any other WG related symptoms appear get yourself to the Drs. You've now mentioned blood in mucus and cough. People with WG (active or in remission) can get coughs without it being WG related and if you're already sneezing this could cause blood in mucus. BUT I really think you're now showing enough signs to get yourself checked up.
Like I said earlier, the longer you leave it the more chance of ending up with much more expensive medical bills.

[B_in_Florida]

What Dr. should I see? Pulminologist like I've been doing?



.... If you notice your eyebrows suddenly quit moving up and down then get to a dr asap. My eye brow quit responding to me trying to move it and the infection had moved onto my brain.


I'm not having any eye-brow problems. I had though WG was either brain-related, or wasn't. That was the impression doctors seemed to be giving me.

[Alias]

Possibly you should start with whatever doctor you are established with and get appropriate referrals from him/her. For your nasal and ear issues the correct specialty is probably an ENT, and if you have not seen a rheumatologist I would think your doctor would refer you to one if he also suspects you are having WG related symptoms.

[drz]

My symptoms for Wegs in order they appeared were: nasal crusting and bleeding, roaming joint pain, weight loss, fatigue, blood in urine, loss of hearing and balance, coughing up blood from bleeding in the lungs. My hearing loss was prmanent . Now I either have an infection in skull around my BAHA site and in my middle ear which is most likely scenario and best case scenario or else an active Weg granuloma in middle ear. It would take a rather invasive biopsy to confirm that so we will treat the probable infection and see what happens from treatment while watching for any other signs or increased Weg activity. I have been in drug induced remission for most of the past three years.

I would recommend going to a Weg expert Center where they have a coordinated team and experts in many areas.