Ear issues - experiences

[Elena]

Hi everyone!

I was wondering about your experiences regarding ear issues.

For the past couple of years my GPA has been in remission, with blood samples all good and slowly reducing the dosage of RTX I get every 6 months. Previously I twice had middle ear infections (both ears) where no bacteria was found and a lot of ear discharge. This was never affected by RTX infusions nor steroids, but sort of "burned out" after about half a year.

In April 2017 I got another middle ear infection and again no bacteria was found and as all my blood work was excellent, the rheumatologists neither believed in it being my GPA doing it. In October though I suddenly got really dizzy, something that slowly subsided over a few weeks. A CT showed quite extensive damage in both ears and I finally got to see an experiences ear-specialist. However, before I got there I also contracted a pretty bad facial nerve paralysis on one side.

Before seeing the ear specialist we already tried increasing my dosage of Prednisone and a rather long, high-dosage course of Antibiotics. Neither had any lasting effect. When I got to the ear specialist, she believed I could have a pretty serious infection in the bone in/behind the ears, even though my blood samples nor bacteria samples from the ear discharge showed it. I was put on a strong IV antibiotics course, which seemed to help with the paralysis and somewhat the ears. I was also scheduled for ear surgery to remove sick tissue, reconstruct my ear drums and some reconstruction of the middle ears (as well as finally getting implants for BAHA). Unfortunately, shortly after finishing the antibiotics treatment, the facial paralysis came back, and we restarted the IV antibiotics. This time to no real effect... My surgery got moved up and ended up lasting 9.5 (!!) hours.

I now believed everything would finally get better, however 3.5 weeks after surgery, the doc discovered that my new ear drums already has new holes and my ears (especially the left) are still discharging. They took a lot of bacteria samples during the surgery and they all turned out negative. Therefore she believes it is active GPA causing the damages (impossible to say if there ever was an infection in addition to the GPA).

I am despairing a bit at the moment. I am already having a way too low IgG-count and am injecting immunoglobulins weekly. I just got another RTX-infusion, though at the same dosage as in July, which had no effect on my ears, and I am already on 20mg of Prednisone. I am having trouble understanding how all blood works can be so good, when my GPA seems to be causing all this damage to my ears. I have previosly been treated with CTX, Imuran, MTX and CellCept and I kind of feel like we are running out of good treatment options for me, especially if the RTX isn't working properly anymore (been getting it almost half yearly since 2010) and with my immune system being so weak... I am currently waiting for the rheumatologists to contact me, now that they are getting informed by the ear specialist that she believes I have active GPA, I am just a bit impatient in the meantime..

On a positive note: after wearing my BAHAs on a softband since April, I could finally start using them properly. The improvement from the softband ist amazing!


Does anyone else have any similar experiences, advice etc. to share with me?

[NatriceRomeo]

Omg Elena! My gosh you have not had good luck & it sounds terrible! I have also been on numerous medications & feel like the Rituxin is my last drug.
I truely hope your rheumatologist comes around & gets on board. Please keep us updated. I will be thinking of you!


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[Pete]

Wie gehts, Elena!!

At disease onset, I had a persistent middle ear infection in my right ear. I had the eardrum lanced twice and a tube put in after the second procedure. The disease has damaged the eustachian tube in my right ear. (Most of the time, I hear OK, but sometimes when the tube malfunctions, it feels like a breeze blowing inside my head.) I now wear hearing aids in both ears as I have tinnitus and about 40% hearing loss. Without hearing aids, I only hear the mid-range part of the audio spectrum. I don't hear bass or treble very well. All the hearing aids do is amplify everything. Noisy environments are very frustrating for me as I generally have a hard time hearing some speaking to me.

Before I was diagnosed, I was treated initially with ciprodex drops. They did no good. Once admitted to hospital, I was on IV antibiotics for five days until the best guess diagnosis of GPA was reached.

Given what you've been experiencing, I don't know what advice to give you except to see if you can get your treatment team together to develop a mutually agreed treatment plan that will help you get better.

[Rose]

HI Elena

I am experiencing ear issues myself at the moment. I have been In remission over 9 years but have had a few flares in my ears and sinuses during this time. An increase in prednisone from my usual 2.5 daily to about 40mgs daily for a few weeks plus nasal irrigations containing cortisone have sorted it. Antibiotics were only given the once when I was diagnosis with Mastoiditis. ENT at the time was unsure if the Mastoiditis was caused by infection or Wegs and so he treated me for both. All treatments were over a few weeks and were successful (See my thread on VERTIGO) All blood work during these times did not show any increase in inflammatory markers. Actually showed that all was well and i was in remission.

This evening I actually accessed the site also to check on ear issues as I am again having a flare in my ears...though not my sinuses which are clear. Again all blood work is normal but my ears are driving me nuts. Fullness, like i am talking under water, tinnitus dizziness and loss of hearing in my (r) ear. The ENT who had been treating my flares since 2008 has left the country so had to find myself another. My Rheumatologist referred me to one but as he says, "there is no an expert in your disease"

The ENT confirmed fluid in both my ears and a severe loss of hearing in my (R) ear (confirmed by a hearing test and compared to one I had done a few years ago). He ordered an immediate MRI which was normal/ He then prescribed 60mgs pred for 5 days, 40mgs for 3 days and then 20mgs for 1 day and then to have a further hearing test. Almost finished the treatment plan, still yet to have the second hearing test but do feel there is a slight improvement in my hearing. However the fullness remains as does the tinnitus etc. Got a feeling this is not going to work this time. I think I need cortisone added to nasal rinses. I will bring up with him after the hearing test. Meanwhile I am doing oil pulling which seems to help, nasal saline rinse (although dont have rhinitis, crusting or bleeding this time) and a few other things that I have found on the net which people say have helped them with their symptoms

My blood work does not show active GPA but I know my body and I know that is what is happening now and what happened in the past. For a few months before the ear symptoms showed themselves i had been extremely fatigued, had a few migrating pains and breaking out in sudden sweats. Crossed my mind at times that maybe something is going on..... and it did eventually show itself.

Rose

[Elena]

I am pretty confident that my rheumatologists will come up with some new treatment plan, I just currently have no clue as to what that could be and whatever it is, it probably will be bad for my immune system and I am worried it won't improve my ears.. I am being treated at the University Hospital of Oslo and the rheumatologists there are excellent at discussing cases with each other, so I usually feel rather safe that I am not only being treated based on the opinion of a single doctor. My ENT is at the same hospital, so luckily that eases the communication between her and rheuma.

I have made everything rather difficult for myself though, because I am currently studying in Germany, but I chose to keep my doctors in Oslo, as I am only temporarily living abroad and the doctors in Oslo know me and my history. This all means that there's a lot of extra coordination and organisation needed every time something's up though... I am so lucky that I don't have issues with fatigue and at the moment, my only symptom of GPA is my ears.

I made it sound like the surgery wasn't a success though, as my ear drums burst again and my ears are discharging, however did improve the hearing on my right ear (something that actually surprised the surgeon), so I am able to hear what people are saying to me in quiet surroundings. My facial nerve paralysis is also slowly healing and at this point, people that doesn't know about it doesn't really notice.

I am normally rather relaxed regarding my GPA, as until now, I didn't really have any lasting and noticeable damage from it. However, I am feeling kind of desperate to preserve the hearing on my right ear, which is why I am so worried about this. I went to the hairdresser the other day, and I was able to communicate with her, even though I had to take of my BAHAs. I really don't want to loose that level of functioning.

Well, I guess I'll have to wait a few more days and if I don't hear anything from the rheumatologists, I will call them. Will keep you posted :)

[Lilly]

I have just read this thread for the first time....I am having problems with my ears, and have been for some time. It seems that when they started giving me real problems around 2009, (I THOUGHT I was having problems then!!) my EENT put a tube in it, and I could basically forget about it, because it took care of the pain and pressure for a long time. The longer I have wegeners, the more damage it does, and I just try to keep up with it. In the last 5 years, my EENT has been able to put tubes in my ears when I got an infection and pressure. But in the last year, the fluid behind my eardrums has become very thick, and kind of causes the tubes to get stuck or for a better way to explain it, "glues the tubes" to my eardrum. A year ago Christmas, I had OPSurg to remove both tubes that were "stuck" in my ears, and my EENT did not want to remove them in the office, because of damage it could cause. So after surg. he told me that the fluid was so thick, it was like elmers glue. So, I never have fluid coming out of my ears, and I have everything from tinnitus, to roaring wind and white noise, and sometimes it sounds like someone is in my backyard with a chainsaw and hammer and a lawnmower. It is so strange. At this point, all those crazy sounds have stopped except the back and forth of white noise and pressure. My left ear has lost 30 percent of hearing. Four weeks ago, I went to my EENT, and told him my ears are not doing all that crazy stuff anymore, except off and on. (He thinks I am loony now! I don't blame him) I had another problem. I asked my him if he could order a CT on my throat because I am having a difficult time getting a full breath of air, I am wheezing at night and hoarse a lot, and its not my lungs, so I thought it may be my throat. He said he could tell by my voice that I did not have anything wrong with my throat, but ordered the CT anyway. I went back in a week , and the test was negative. So just by chance, my right ear had developed some fluid behind it, and I asked him to take a look. Sure enough, he saw fluid. But with all the stuff I have gone through this past year and a half, he asked me if I wanted him to put a tube in it, or leave it be. (At this point, he is becoming frustrated because things are just not working like they used to. And I think he feels like I am coming in with problems that come and go.....and he is right! Its darn frustrating to ME!!!) So I decided to let him put a tube in my right ear. But when he suctioned, he had to use a very strong suction and the fluid is very thick and difficult to get out. He got the tube in. I was so dizzy for a few minutes, and asked him if he knew why the fluid was like this....he said probably because of wegeners....I know he is feeling what I am feeling....DEFEATED!!! He is such a great doctor, and he also cleans my nose when I need him to get the stuff in the back that I cant reach. We have always been able to "fix" me, but no more. Has anyone else had similar problems with ears? My left one has a hole in it, it has always been the worst one, but the right one has the tube for a week or 2 now, and I could hear so much better that what was happening to me before.....but things are changing and my left ear is white noise, and right ear feels pressure. Yikes.....my EENT is probably going to start crying the next time I go to see him....I will wait as long as I can! Any similar issues from anyone would be helpful.. Stay strong everyone...Much Love, and Blessings,

[Alias]

lilly, your symptoms sound very familiar to me. I have significant hearing loss on one side. On that side, I also have severe tinnitus that varies in type (ringing, roaring, etc.) and intensity. On both sides I have that plugged feeling, but not always. It's really frustrating because I can't tell what triggers it. Some days it will be barely noticeable and other days it's terrible. I also have nearly constant nasal congestion to some degree, often to the point that I can't breathe through my nose and I sound like I have a terrible cold. It is improved by rinsing, but not for long. In my case, I believe the hoarseness and difficulty breathing is caused by post-nasal drip. It is very difficult to get a good night's sleep when this is going on. Rinsing and drinking lots of water during the day seems to help somewhat, but again it's very unpredictable. OTC Flonase is somewhat helpful.

[Bing505z]

lilly, your symptoms sound very familiar to me. I have significant hearing loss on one side. On that side, I also have severe tinnitus that varies in type (ringing, roaring, etc.) and intensity. On both sides I have that plugged feeling, but not always. It's really frustrating because I can't tell what triggers it. Some days it will be barely noticeable and other days it's terrible. I also have nearly constant nasal congestion to some degree, often to the point that I can't breathe through my nose and I sound like I have a terrible cold. It is improved by rinsing, but not for long. In my case, I believe the hoarseness and difficulty breathing is caused by post-nasal drip. It is very difficult to get a good night's sleep when this is going on. Rinsing and drinking lots of water during the day seems to help somewhat, but again it's very unpredictable. OTC Flonase is somewhat helpful.

Have you tried QNasl? Plugged feelings, muffled hearing, one ear amplifying noise ridicuolusly and causing pain, nasal drip while sleeping causing me to cough, the ringing and roaring, all went away after using QNasl for several weeks. ENT told me about it, he said studies showed QNasl reached the ears more than any other spray. Cheers!

[Helen]

There's the possibility of a cause to many people's ear dilemma is from Eustachian Tube Dysfunction (ETD). The ETs get clogged (closed). This creates too much mucous buildup, w/ possibly bacteria from sinuses or throat going up the ETs. The ET gets plugged up and creates the fullness and other symptoms of pressure/dizziness in the ear. This can create further hearing problems.

The opposite of ETD is Patulous Eustachian Tube (PET) which is when they're stuck open, causing a lot of air ventilation, pressure and echoey roaring type of tinnitus. This also magnifies/distorts sound. It' a horrible disorder.

At times, when it's in-between ETD and PET like during infections, it can become "Dynamic"... going back and forth between ETD and PET symptoms. Thats why the tinnitus goes away after they get healed again. It appears the ETs get affected by vasculitis inflammation, as they have a lot of capillaries, nerves, muscle, fat to help it function all the time, like a little valve. -H.

[Pete]

Helen

Thanks for this post. It explains what I've been experiencing for the past seven years. Most of the time, my ET seems to do OK. I rarely feel pressure or fullness. But frequently (several times a week), I have PET. It seems a trigger is when I'm in a loud environment and I try to talk loudly enough to be heard.

[Helen]

Yes, this is one of the symptoms I am really suffering from too, but 24/7. It's debilitating. PET usually happens after long term ETD and sinus problems. Mine happened immediately after an ear surgery which I'm still trying get help for. Do you get a roaring type of tinnitus sound, gloomps/thumps? The constant roaring is what's most debilitating for me at this time.

Do you feel like your voice is too loud when you talk, making you feel off balance at times?
More research point out many patients have history of sinus inflammation - no surprise. In the past, they thought weight loss. Hormones do play a factor to both ETD and PET. I personally feel Vasculitis inflammation is one... it makes sense but nothing has been said about that yet. -H.

[Alias]

That is very interesting and accurately describes what I experience. I can compensate for the hearing loss to some extent, but the variable symptoms of ETD/PET are sometimes exhausting. I hate that feeling of not knowing how loud my voice is, hearing my own respiration, etc.

[Pete]

Helen

I had tinnitus for many years before GPA. Mine is a high pitched squeal in both ears. I was in the Army before hearing protection was offered on rifle ranges. I also worked in a steel mill for a few years and was in a high noise environment several times each week. Toss in a few rock concerts and GPA, and voila, I have about a 40% hearing loss. In loud environments, I know I speak louder just to be heard. Most of the time, I speak at normal volume.

[Bing505z]

There's the possibility of a cause to many people's ear dilemma is from Eustachian Tube Dysfunction (ETD). The ETs get clogged (closed). This creates too much mucous buildup, w/ possibly bacteria from sinuses or throat going up the ETs. The ET gets plugged up and creates the fullness and other symptoms of pressure/dizziness in the ear. This can create further hearing problems.

The opposite of ETD is Patulous Eustachian Tube (PET) which is when they're stuck open, causing a lot of air ventilation, pressure and echoey roaring type of tinnitus. This also magnifies/distorts sound. It' a horrible disorder.

At times, when it's in-between ETD and PET like during infections, it can become "Dynamic"... going back and forth between ETD and PET symptoms. Thats why the tinnitus goes away after they get healed again. It appears the ETs get affected by vasculitis inflammation, as they have a lot of capillaries, nerves, muscle, fat to help it function all the time, like a little valve. -H.

Excellent info. Thanks Helen. I had amplified hearing in the left ear and the right ear was muffled. Just as the ENT told me about my lack of taste and smell, it may return to normal and it may not. Oh was I glad not only my ability to taste and smell returned, but my ears when back to normal with no real hearing loss. The amplified left ear really was a pain however, for about 6 months I took ear plugs with me everywhere. Out on the boat, 4 of July fireworks, bands, at the movie theater etc. I had to keep an ear plug in that ear because it was incredibly loud and disturbing. At the firing range I always wore ear plugs, but I needed muffs in combination to be able to fire weapons. But months after being treated with the glorious Rituxan everything went back to normal. During all of this, before my hearing went back to normal, I went to the American Hearing Research Foundation to look up SHL (sudden hearing loss) I found like 15 to 20 suspected causes and of course "unknown was listed" , and then it stated on their site that because of the lack of a definite cause of SHL, the treatments are controversial and it lists prednisone as a drug. I laughed and thought "oh piss off" with that...lol nonsensical.

[Helen]

Tom, that sounds very alike to a "Dynamic" Eustachian Tube Dysfunction (ETD). It's going between a Patulous (PET) condition (roaring tinnitus- everything is too loud) when stuck opened, then when it's closed too much, muffling sounds, which is opposite, called ETD. This is all related to congestion impeding your ETs to function properly. A lot of people including myself were unaware as Drs. don't tell you but you just -know- something there is not working. You're correct about keeping yourself hydrated. Try be consistent of using a more alternative/natural method of just saline solution sprays to maintain a healthy -biofilm- in your nose and drinking lots of fluids. I know this is a hard to make a habit on. A lot of prescription sprays do more damage to make people return to the Drs. in a vicious return cycle of $$$ AND could create a more permanent PET issue, which is more difficult to treat than ETD (which you do NOT want).
Have you ever checked to see if you have nasal polyps? -H.

[Helen]

@Helen (https://www.wegeners-granulomatosis.com/forum/member.php?u=9784)

I had tinnitus for many years before GPA. Mine is a high pitched squeal in both ears. I was in the Army before hearing protection was offered on rifle ranges. I also worked in a steel mill for a few years and was in a high noise environment several times each week. Toss in a few rock concerts and GPA, and voila, I have about a 40% hearing loss. In loud environments, I know I speak louder just to be heard. Most of the time, I speak at normal volume.

Explaining the type of tinnitus is important. The high-pitch type really signifies over-noise exposure damage, which is unfort. causes permanent conductive type of hearing losses. High pitch tinnitus occurs with this, otosclerosis and presbycusis. You sound to have had a very interesting life. :smile1: Best thing for now, is simply hearing aids and keeping yourself and sinuses healthy. -H.

[seied]

Explaining the type of tinnitus is important. The high-pitch type really signifies over-noise exposure damage, which is unfort. causes permanent conductive type of hearing losses. High pitch tinnitus occurs with this, otosclerosis and presbycusis. You sound to have had a very interesting life. :smile1: Best thing for now, is simply hearing aids and keeping yourself and sinuses healthy. -H.

Can high-pitch tinnitus happen due to GPA? Or can GPA reduce tolerance to over-noise exposure?

Thanks!

Ed.

[Ropland]

@Helen (https://www.wegeners-granulomatosis.com/forum/member.php?u=9784)

I had tinnitus for many years before GPA. Mine is a high pitched squeal in both ears. I was in the Army before hearing protection was offered on rifle ranges. I also worked in a steel mill for a few years and was in a high noise environment several times each week. Toss in a few rock concerts and GPA, and voila, I have about a 40% hearing loss. In loud environments, I know I speak louder just to be heard. Most of the time, I speak at normal volume.

It's like you're describing me, Pete. I've had pretty much the same kind of experiences. On top of that, I always liked to listen to loud music through the headphones.

[Alias]

Thank you, this is interesting. Pretty sure I don't have polyps as I have had excellent consult and exam with rhinologist in Seattle and polyps were not diagnosed.

[Rose]

It has been about 6 weeks now when I first experienced my recent ear problems. The ENT I consulted tells me it is a virus affecting my middle ear and has left it at that. His treatment with upping the dose of cortisone for about 10 day’s and later cortisone administered directly into the nostrils for 7 days, although has improved my symptoms, I am still very much experiencing hearing loss, tinnitus and fullness in both ears.

I have been researching via Dr Google and Autoimune Inner Ear Disease has more or less the same symptoms as inner ear problems caused by a virus. Treatment if autoimmune is suspected is aggressive therapy with prednisone 60mgs for 2 to 4 weeks. I have had 2 flares in my ears and sinuses over the past 10 years and my other ENT(now left the Country) first went to the conclusion that it was the Wegeners causing the problems and always treated me aggressively with high dose Pred orally for at least 2 weeks with cortisone added to nasal rinses for around same time. ...and it always did the trick.

I think my new ENT has come to the conclusion that my present problem is caused by a virus because I did not respond well to his treatment of upping the prednisone. I think I did not respond well to the treatment because it was not aggressive enough

Ear symptoms just as I am experiencing now were the first symptoms before the Wegs dog attacked my kidneys,lungs etc. I even went totally deaf at be point. I only got relief from the ear and later sinus probl3ms when I started treatment (cyclophosphamide etc) for WG

I am convinced that I am having a flare in my ET and require more aggressive treatment. Problem is no one here has got experience with Wegs. What to do?? I did ask my new ENT specialist to be on high dose cortisone for a bit longer and he was....horrified! Yes! That’s the word. He asked if I knew how toxic the drug was. Guess he is more conservative in his treatment than my previous ENT specialist.

Rose

[Rose]

Saw my Rheumatologist the other day. Blood work is a bit off. Raised Liver enzymes and CRP at 7 ( has not been over 5 for a few years). The fact that I am still having symptoms of fullness and tinnitus in my ears and the fact that these were one of my first symptoms before diagnosis makes him think that it is indeed a flare. He agrees that it may not have been treated aggressively enough and wants me to have Solumedrol 1000 mgs once off IV.

I was a bit surprised by this as it seems a bit too aggressive to me. My ET's improved with the ENT's treatment but not totally. They are not getting worse but then again have not got any better since stopping his treatment. I do though feel better in myself and apart from the ears I feel OK. My worry with this very high dose cortisone is that although it may improve my ear symptoms and hearing ( volume on TV does not have to be turned up for me so guess the hearing loss is not too bad) it makes me more prone to infections. This happened the last time I got Solumedrol 500 IV x 3.back in early 2015. I had a bout of Divertculits a few weeks before and after the high dose Solumedrol, the Diverticulitis flared again....., not once but 5 times over the following 6 months each time requiring hospitalization for I V antibiotics.

I do have a UTI which I have been treating naturally. I have been advised by a Nephrologist to keep away from antibiotics if possible and only to use them as a matter of life or death as my urine cultures are returning showing antibiotic resistance. Guess it is low grade infection i have at the moment as my symptoms are few and I have been working on killing the infection and biofilm naturally. So my concern here is if I do have Solumedrol IV 1000 mgs, my ears may be better but then I could come down with an aggressive UTI which could possibly be resistant to antibiotics.

Has anyone been treated with oral Pred for a flare in their ETubes? How long were you treated for and were your symptoms relieved immediately or did they persist for a while after the treatment stopped.....or did the tinnitus and fullness never go away? At the moment I am back to 2.5mgs of pred.

Rose

[Pete]

It seems that some meds can cause tinnitus. If this dumb disease doesn’t get you one way, it’ll find another...

https://health.clevelandclinic.org/tinnitus-5-strange-reasons-for-ringing-ears/