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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 :confused:
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
[QUOTE=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 :confused:[/QUOTE]

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.
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
[QUOTE=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[/QUOTE]



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





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