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Old 02-15-2004, 05:11 PM   #1
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tinawall HB User
Question unexplained hearing loss

I was wondering if anyone out there might have experienced something similar to what I am experiencing and if anyone can offer any advice.

Four months ago I had an upper respiratory infection and fluid in my ear. The doc prescribed biaxin. About 1 month after that, I suddenly developed a clogged feeling in my right ear and distorted sounds. The only way I can describe it is as if everything echoed. This only lasted for about 3 days and went away. A month later, it came back again. I went back to the doc and he said that he did see some fluid in my right ear. He did a hearing test with a thing he stuck in my ears and I had to let him know when I heard beeps. He said I had some diminished hearing in both ears. He prescribed entex and prednisone. I was to take the entex for 10 days and then if there was no improvement, I was to take the prednisone. I took both as prescribed and neither one seemed to make a difference. 2 weeks ago I was referred to an ENT. Both ENT and my regular doctor now say there is no fluid in my ear. The ENT did more extensive hearing tests and said that I either had a growth or nerve damage from a viral infection and more than likely permanent hearing loss. MRI was done that same week and all was normal. I go back in a week for allergy testing but I don't know what the purpose of that is. Has anyone out there ever been told that allergies caused this type of problem?

I am very frustrated and the distorted sounds and diminished hearing have really gotten me down. I would greatly appreciate hearing from anyone else with similar symptoms.

Tina

 
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Old 02-25-2004, 08:56 AM   #2
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Re: unexplained hearing loss

I don't know if I can offer you any advice but I can sympathize with you for your frustrations.

In February of 2000, I had a bad upper respiratory infection (I get them frequently actually) and woke up totally deaf in my left ear and ringing. No dizziness or anything like that. Two days later I regained some of my hearing back but the ringing stayed. I saw my GP who kept saying that it was fluid in my ears and that it would clear up. Three months went by before I got in to see an ENT. It was not just fluid buildup and the ENT said that had I gotten treatment with a steroid (like Prednisone) 24-48 hours after my hearing loss, I may have restored my hearing. I had an MRI done to check for an acoustic neuroma (MRI was negative). I have been given the diagnosis of "I don't know what the he** happened to your hearing but you probably will never get it back because of nerve damage." Four years later and still 60% deaf in my left ear and still ringing.

Like I said, I can't offer much advice but I do understand your frustration.
Molly

 
Old 02-25-2004, 01:06 PM   #3
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susie141 HB User
Re: unexplained hearing loss

Quote:
Originally Posted by tinawall
I was wondering if anyone out there might have experienced something similar to what I am experiencing and if anyone can offer any advice.

Four months ago I had an upper respiratory infection and fluid in my ear. The doc prescribed biaxin. About 1 month after that, I suddenly developed a clogged feeling in my right ear and distorted sounds. The only way I can describe it is as if everything echoed. This only lasted for about 3 days and went away. A month later, it came back again. I went back to the doc and he said that he did see some fluid in my right ear. He did a hearing test with a thing he stuck in my ears and I had to let him know when I heard beeps. He said I had some diminished hearing in both ears. He prescribed entex and prednisone. I was to take the entex for 10 days and then if there was no improvement, I was to take the prednisone. I took both as prescribed and neither one seemed to make a difference. 2 weeks ago I was referred to an ENT. Both ENT and my regular doctor now say there is no fluid in my ear. The ENT did more extensive hearing tests and said that I either had a growth or nerve damage from a viral infection and more than likely permanent hearing loss. MRI was done that same week and all was normal. I go back in a week for allergy testing but I don't know what the purpose of that is. Has anyone out there ever been told that allergies caused this type of problem?

I am very frustrated and the distorted sounds and diminished hearing have really gotten me down. I would greatly appreciate hearing from anyone else with similar symptoms.

Tina
I suddenly became sick and began losing my hearing about 4 years ago. At the time I had tinnitus and definitely had the distortion that you mention. Some things I couldn't hear at all, others didn't sound like they should. It turned out that my hearing loss was due to an autoimmune disease. I took Prednisone within a couple of days of losing my hearing and it helped a bit. Later, when I had further attacks on my hearing I had steroid injections into my ear and they helped a lot. Whether or not steroid injections would be appropriate for you I don't know, but maybe you could discuss that with your ENT.

 
Old 03-13-2004, 06:09 PM   #4
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Re: unexplained hearing loss

Thanks Molly and Susie for your reply. I have now been through all of the allergy testing and found out all of the things I am allergic to. I went back to the ENT 2 weeks ago and he now says I have otosclerosis. I know I'm not a doctor, but I just have my doubts that this is the right diagnosis. I am going on March 24th to another ENT for a second opinion. There is no way I'm having any surgery unless I feel sure that's what I have. He also mentioned that I could try a hearing aid. I'm just going to wait until after the 2nd opinion to make a decision.

Do either one of you know if hearing the distorted sounds is considered tinnitus? Everything I have read on tinnitus does not sound like the same symptom that I have. I do not hear ringing or buzzing. The only thing I notice (other than the hearing loss) is that I hear sounds and they just don't sound right. It almost sounds like those announcers on the monster truck commericals (have you heard those?)...anyway....I DO sometimes hear a siren when there is not one, but that's about it. The sound from the television bothers me more than anything.

Thanks again for replying,

Tina

 
Old 03-14-2004, 02:26 AM   #5
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Re: unexplained hearing loss

Tina, I'm glad you're getting a second opinion as some of these ear problems can be difficult to sort out. As I understand it, tinnitus is the buzzing/ringing/hissing that many people hear when they have damaged hearing. Distorted hearing is different, and I can compare them because I have had both. When my hearing was distorted, things just didn't sound as they should. I couldn't recognise my friends' voices on the phone, and some of them sounded like Mickey Mouse. Music sounded absolutely revolting to me -all out of tune. I also remember that cars driving along the street sounded like waterfalls. With tv, I could hear the sound, but not understand it because of the distortion. I can sympathise with you.

Let us know how you get on at your next appointment.

Susie

 
Old 03-15-2004, 04:29 PM   #6
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Re: unexplained hearing loss

Susie,

Do you know if there is a medical term or name for the distorted hearing symptom? I also read that poeple with otosclerosis can hear better in a crowded room, which I can not. Anyway, I guess it's just a wait and see kind of thing. I love listening to music but now I can't stand to listen to it. It is really depressing. Didn't you say your hearing loss was from an autoimmune disorder??? Will you ever get any of your hearing back. Is yours in both ears?

I will definitely let you know what they say after my 2nd opinon.

Tina

 
Old 03-16-2004, 10:23 AM   #7
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Re: unexplained hearing loss

I would skip going to an ENT if there is suspected nerve damage and if you think the inner ear is involved. You need a neurotologist. They specialize in disorders of the inner. ENT are not as specialized with dealing with the nerves and take that otosclerosis surgery very seriously and get more than one opinion before having it done. If you've been misdiagnosed then messing with that bone will only give you multiple problems.

Sudden hearing loss should always be taken very seriously and you should head to a doctor immediately. The only known thing to work is Steroids within the first 24-48 hours but usually the gp's and even some ent's do not use a high enough dose. This type of hearing loss is usually related to allergies. If you've taken pred. and had it not help then chances are yours is not related to allergies.

I awoke almost a year ago from a nap with my 2 yo son and found myself completely deaf in one ear. I kept thinking it was just plugged and it would clear soon. By 3am I had no balance and thought I had a stroke or something ear related so decided to sleep it off (didn't work). I went to 3 different docs in the first week and all told me it was viral labrynthitis and to go home and wait it out. One doc did give me steroids but it was pretty low dose. I could actually feel both ears hurting just the one with hearing loss was VERY bad. I finally ended up in the ER clinic again with ear pain so bad that I begged them to poke a hole in my inner ear and let the pressure out. To them, my ears looked fine. I spent weeks and weeks this way waiting to get into the ENT who told me the same thing and sent me home. Had the MRI. I finally ordered my family doc to try a round of antibiotics and I did begin to feel better but all bloodwork showed no infection so who knows?

I finally got up the courage to go and see a neurotologist who did extensive hearing and balance tests. I have a complete hearing loss on left side with no word discrimination. I also have excess fluid in my inner ear that was a specialized test that very few do. What was astounding to me was my good ear tested out as having about 25% hearing loss and also excess fluid. I had no idea I had hearing loss in that ear. I have what is called hydrops which will now be a lifelong illness that is a direct result of 'the virus' or 'the stroke' that the doc thinks I may have had. My balance nerve was also effected and I test as having a vestibular dysfunction which means that almost a year later, I feel as if I'm being spun in a dryer over small movements. I loose balance in the dark, I have HORRENDOUSLY loud tinnitus and of course I'm still mourning and learning to live with the hearing loss which is progressive and I will probably end up completely or near completely deaf depending on the course this illness takes which has not been good so far. No hearing aid will help my bad ear because of all the nerve damage but I'm looking into a baha implant.

So please see a neurotologist because so much more can be going on than a regular doctor or even an ENT can see. Many people have something called Menieres that can take years and years to diagnose and it can have fluctuating hearing loss that worsens over time. Neurotologists specialize in the hearing nerve and inner ear.

BTW, with hearing loss (particularly single sided loss) crowded rooms are a REAL challenge to hear in since voices and specifics of speech are harder to distinguish. I only have mono hearing from the one side and can't tell where sounds are coming from and I have given up trying to hear a conversation in noisy restaurant. As for music, I've had a hard time with that too since we love music. I only have the distortion in one ear. It sounds to me like a blown speaker or being trapped in a charlie brown cartoon. The sounds are real scratchy and irritating. I use an ear plug in one ear to drown out most of it. Plus for me it helps those around me know which side to stand on so I can hear them. My kids tend to forget.

Last edited by wp1; 03-16-2004 at 10:27 AM.

 
Old 03-16-2004, 04:18 PM   #8
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Re: unexplained hearing loss

I can't believe this, I just wrote you a long reply and then lost it! Don't you hate that! OK, here goes again. I'm sure there is a medical term for distorted hearing, but it escapes me right now. "Recruitment" is the term for when sound hurts the ear, and I also experienced that with my hearing troubles.

My hearing (and other) problems did turn out to be due to an autoimmune disorder, Cogan's Syndrome to be exact. Cogan's is like having autoimmune ear disease but with autoimmune eye issues as well. It all began about 4 years ago when I suddenly felt very ill, extremely fatigued and lost my sense of balance (couldn't walk by myself). I was losing the hearing in both ears (one was worse than the other) by the hour, and developed tinnitus, distorted hearing and recruitment. I was treated with high dose oral prednisone and serc and very slowly recovered over the next 3 months. During those 3 months I also developed autoimmune eye problems, which I won't go on about here. It took about a year for my walking to at least look normal (even though it didn't feel it).

But, after recovering from that first attack there were many more to follow over the next 3 years. Initially both ears were attacked and then later only the left one was. My eyes were the other way around. First only one became inflamed and then in later attacks it was always both of them. Why? Who knows! I ended up getting steroid injections into my left ear at a time when it looked as though I was going to lose my hearing altogether. (The prognosis for hearing with Cogan's is poor). After only 2 injections I had quite a remarkable improvement in my hearing which was a pleasant surprise for both me and my ear doc. (He admitted later, that he really wasn't expecting such amazing results). Luckily I am what they call "steroid responsive". Wp1, if you are also reading this, I also had the hydrops test, with a positive result. All my balance tests showed that I had lost virtually all sense of balance in one ear, and a lot in the other. Blood tests have shown higher than normal ANA and CRP. These are non specific results, but indicate that inflammation is present.

Tina, I hope your upcoming appointment goes well. If you are unhappy with it, be pushy about seeing someone urgently, as some hearing problems need immediate treatment.

Keep us posted,
Susie

 
Old 03-16-2004, 05:16 PM   #9
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Re: unexplained hearing loss

wp1, have you ever tried steroid injections into the ear? Or have they even been suggested to you? It's probably too late after your initial problem to expect treatment to work now as you know, but if you get further deterioration, maybe you could try them. I was terrified at first, but altogether I've had about 20 injections now, and they bring back hearing lost in a fresh attack. Don't know if they would be appropriate for you, but just thought I'd mention them. I can definitely relate to the balance issues. It's 4 years on now, and my walking is really good, but I have strong memories of the rocking/swaying etc.

 
Old 03-17-2004, 07:51 AM   #10
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Re: unexplained hearing loss

Susie - what were your vision problems??? I ask because so much of your experience sounds like mine and recently I have begun to have vision problems that have forced me to a neurologist who says they are migraine related but I tend to think they are more nerve related. I had nerve problems for months and months. Shooting pains when I would lay down that affected arms and legs. I've never looked into cogan's syndrome.

My neurotologist has never recommended injections. He told me that he has never had anyone regain hearing after 9 mos....It will be a year for me next month.

I've only had the one massive attack of balance initially and since then have slowly been recovering. I think it has taken a year for my brain to adapt and I had a total vestibular dysfunction too on the one bad side and a mild dysfunction in the other. I have to say that taking 1mg of diazepam in morning and evening has been the BEST thing for making that nagging balance issue better. I know what you mean about walking. I've worried people would think I was drunk but it is much better now.

 
Old 03-17-2004, 09:12 AM   #11
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Re: unexplained hearing loss

WOW!! I can not believe this but that is almost EXACTLY what happened to me about 2 months ago!

I was cogested (not really bad) and literally woke up one Saturday morning with NO hearing in my right ear. I have been on antibiotics, anti-virals, steroids, and decongestants. None worked. There was no sign of any infection to my ear and I my ENT ordered an MRI thinking that I had tumors on the nerve. MRI came back totally normal!

Now back to sqare one. My ENT says that most likely I had a viral infection (I was not even sick) and it damaged the nerve in my ear. He can not tell me if it is permantent or not. I want to go for a 2nd opinion but I have to find out the process with insurance and everything.

What is most frustrating is that I am only 31 and other than this, totally healthy!!

 
Old 03-17-2004, 12:04 PM   #12
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Re: unexplained hearing loss

Quote:
Originally Posted by wp1
Susie - what were your vision problems??? I ask because so much of your experience sounds like mine and recently I have begun to have vision problems that have forced me to a neurologist who says they are migraine related but I tend to think they are more nerve related. I had nerve problems for months and months. Shooting pains when I would lay down that affected arms and legs. I've never looked into cogan's syndrome.

My neurotologist has never recommended injections. He told me that he has never had anyone regain hearing after 9 mos....It will be a year for me next month.

I've only had the one massive attack of balance initially and since then have slowly been recovering. I think it has taken a year for my brain to adapt and I had a total vestibular dysfunction too on the one bad side and a mild dysfunction in the other. I have to say that taking 1mg of diazepam in morning and evening has been the BEST thing for making that nagging balance issue better. I know what you mean about walking. I've worried people would think I was drunk but it is much better now.
wp1 it sounds as though our balance problems were of a similar type. Some people with inner ear problems get the spinning room sensation, whereas you and I obviously have the staggering drunk variety. On more than one occasion I had remarks made about me on the street about being drunk. It was so frustrating! I think these ear problems are difficult for doctors to diagnose and I too was initially diagnosed with viral labyrinthitis. That was fair enough as my eye symptoms hadn't developed at that time. Anyway, to the eye symptoms...in my eyes I have had uveitis and interstitial keratitis. These are types of inflammation and people with Cogan's get various different ones. The symptoms I had were blurry vision, white part of the eye turned completely red and was painful, very sensitive to light and constantly tearing. Like the ears, the treatment was with steroids.

I tend to agree that after 1 year of hearing loss, the chances of recovering that hearing are remote. I hope you never have any further problems. But if you do, keep the steroid injections in mind as something to discuss with your ear doc.

Not you too Double T! It seems these sudden hearing problems often strike at a relatively young age. I was 28 when it all started. Prior to that I had no idea that people could suddenly lose their hearing through an illness. Keep us posted on how you get on.

 
Old 03-17-2004, 04:03 PM   #13
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Talking Re: unexplained hearing loss

Quote:
Originally Posted by Dubble T
WOW!! I can not believe this but that is almost EXACTLY what happened to me about 2 months ago!

I was cogested (not really bad) and literally woke up one Saturday morning with NO hearing in my right ear. I have been on antibiotics, anti-virals, steroids, and decongestants. None worked. There was no sign of any infection to my ear and I my ENT ordered an MRI thinking that I had tumors on the nerve. MRI came back totally normal!

Now back to sqare one. My ENT says that most likely I had a viral infection (I was not even sick) and it damaged the nerve in my ear. He can not tell me if it is permantent or not. I want to go for a 2nd opinion but I have to find out the process with insurance and everything.

What is most frustrating is that I am only 31 and other than this, totally healthy!!

I feel like I have read everything on the internet related to hearing problems. I am 34, so it's the same thing for me...healthy....etc. This is definitely very frustrating for me mainly because the doctors almost act like you are crazy when you tell them your symptoms. Have you been having the same thing with the distorted sounds? That is the worst part for me. I have been depressed about it too because I used to love to listen to music (especially in the car), but now I can't stand it and I have even taken all the cd's out of my cd changer. Plus, I am constantly asking people to repeat themselves. Do you have any allergies or have you ever been tested? Due to all of this problem with my ear, it came up that I should have allergy testing. I am allergic to both indoor and outdoor allergens. I asked the ENT if the allergies could be causing this hearing loss and of course he looks at me like I'm crazy and says "NO". I'll definitely let you know what I find out with the 2nd opinon and you keep me posted if you find out more about yours too. It's nice to hear from someone experiencing the same thing you are....so thanks for posting your reply!!!!!

Tina

 
Old 03-17-2004, 04:10 PM   #14
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Wink Re: unexplained hearing loss

Quote:
Originally Posted by mollyd1234
I don't know if I can offer you any advice but I can sympathize with you for your frustrations.

In February of 2000, I had a bad upper respiratory infection (I get them frequently actually) and woke up totally deaf in my left ear and ringing. No dizziness or anything like that. Two days later I regained some of my hearing back but the ringing stayed. I saw my GP who kept saying that it was fluid in my ears and that it would clear up. Three months went by before I got in to see an ENT. It was not just fluid buildup and the ENT said that had I gotten treatment with a steroid (like Prednisone) 24-48 hours after my hearing loss, I may have restored my hearing. I had an MRI done to check for an acoustic neuroma (MRI was negative). I have been given the diagnosis of "I don't know what the he** happened to your hearing but you probably will never get it back because of nerve damage." Four years later and still 60% deaf in my left ear and still ringing.

Like I said, I can't offer much advice but I do understand your frustration.
Molly


Molly,

Did you ever go back to the doctor after that or did they make any suggestions to you on what you should do (i.e. was a hearing aid every recommended to you)? The ENT now says I have otosclerosis and I could try a hearing aid or have surgery, but I am going for a second opinion. The symptoms I have read for otosclerosis just don't seem to be the same as what I have. I don't have tinnitus but have more of "distorted sounds". I also can't hear better in a crowded room, which I have read that most people with otosclerosis CAN hear better in a crowded room. Anyway, I guess I will just wait and see what they say. I really don't want to have the stapedectomy surgery so I might try a hearing aid first. I'm sure the stapedectomy has worked well for a lot of people, but I'm just a big wimp......

Tina

 
Old 03-17-2004, 04:55 PM   #15
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Re: unexplained hearing loss

Tina - it's not in your head (pardon the pun). Don't let anyone tell you it is. The funny noise is the way your brain is getting the signal from the inner ear. If there is damage to the hearing part of the inner ear, the signal is scrambled and you hear noises as distorted. Mine are VERY distorted in one ear but not the other. Have you had a formal hearing test by an audiologist? They should test for word discrimination which is your ability to repeat back a series of words. I can hear sounds greater than 70dbls but I can't make out any of the speech. Out of 5 words said to me in that ear, I can repeat back zero. Speech is too distorted to make out. Things like running water sounds like crackling. Music is just plain annoying. Hang in there and try a neurotologist.

Susie - We do sound like pretty much the same type of vestibular problems. I'm assuming you REALLY flunked the rotational chair test? I couldn't tell I had stopped moving until they opened the door where I got a visual cue and I felt pretty stupid because I realized then that the chair had stopped awhile back.

 
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