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Thread: Ear issues - experiences

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    Default Re: Ear issues - experiences

    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.

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    Default Re: Ear issues - experiences

    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.

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    Default Re: Ear issues - experiences

    @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.
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

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    Bing505z is offline Banned for being a douchebag
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    Default Re: Ear issues - experiences

    Quote Originally Posted by Helen View Post
    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.
    Last edited by Bing505z; 03-02-2018 at 06:06 AM.

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    Default Re: Ear issues - experiences

    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.
    Last edited by Helen; 03-01-2018 at 11:48 AM.

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    Default Re: Ear issues - experiences

    Quote Originally Posted by Pete View Post
    @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.
    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. Best thing for now, is simply hearing aids and keeping yourself and sinuses healthy. -H.

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    Default Re: Ear issues - experiences

    Quote Originally Posted by Helen View Post
    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. 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.

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    Default Re: Ear issues - experiences

    Quote Originally Posted by Pete View Post
    @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.
    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.

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    Default Re: Ear issues - experiences

    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.

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    Default Re: Ear issues - experiences

    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
    Last edited by Rose; 03-04-2018 at 12:40 AM.

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