Cogan's Syndrome - Hearing Disorders Message Board

bcruth4 · 01-07-2004, 04:01 PM

Does anyone here have experience with Cogan's Syndrome. I think I may have a variant of it. Two years ago I had sudden onset of loud tinnitus. I went to several specialists and none of them knew what caused it. My hearing is nearly normal. About a year prior to tinnitus, I experience major swelling in my left eye (the white part turned blood red and become inflamed). I recived steriod eyedrops and they cleared up instantly each time.

I have recently read about Cogan's Syndrome and my symptoms are similar, but less severe. Can anyone comment? Thanks!

susie141 · 01-26-2004, 08:15 PM

Quote:

Originally Posted by bcruth4

Does anyone here have experience with Cogan's Syndrome. I think I may have a variant of it. Two years ago I had sudden onset of loud tinnitus. I went to several specialists and none of them knew what caused it. My hearing is nearly normal. About a year prior to tinnitus, I experience major swelling in my left eye (the white part turned blood red and become inflamed). I recived steriod eyedrops and they cleared up instantly each time.

I have recently read about Cogan's Syndrome and my symptoms are similar, but less severe. Can anyone comment? Thanks!

I've had Cogan's Syndrome for the past 4 years and during that time I've learnt that it can effect people in different ways. Some people get really severe symptoms that hardly respond to treatment, whilst others have milder forms, and there are many variations in between. Sometimes people get symptoms in their eyes and ears at the same time, whilst others may have years between eye and ear problems. Naturally, this makes diagnosis very difficult.

Given your history of sudden tinnitus and eye inflammation, I would keep a close watch on your hearing, and if any problems arise, see a doctor immediately. Receiving early treatment is paramount in saving the hearing lost to Cogan's.

Any more questions, feel free to ask.

bcruth4 · 01-29-2004, 06:50 PM

Hi,

Thank you for responding. I was starting to think nobody would answer. How did you get your diagnosis? What has your experience been & how has your problem progressed?

Thanks!!

susie141 · 01-29-2004, 07:41 PM

Quote:

Originally Posted by bcruth4

Hi,

Thank you for responding. I was starting to think nobody would answer. How did you get your diagnosis? What has your experience been & how has your problem progressed?

Thanks!!

OK...it all began very suddenly about 4 years ago. I had had blocked ears for a week, which was annoying but seemingly trivial. Then, all of a sudden one day I felt really sick and incredibly tired. Slept and slept and woke the next day to discover I had lost my sense of balance (couldn't walk by myself) and couldn't hear properly. I had an incredible tiredness and had also developed tinnitus. My hearing (both ears) and other symptoms worsened over the next couple of days, so I was treated with oral prednisone and serc, although doctors thought I had labyrinthitis.

Recovery from that attack was very gradual and I was virtually out of action for about 3 months. During that time, I developed a red inflammed eye, which after many eye hospital visits was diagnosed as uveitis/interstitial keratitis and treated with steroid creams and drops. Had heaps of blood tests and eye exams, but docs were hesitant to give a definite diagnosis. Over the next 6 months I had multiple similar attacks in first one eye, and then both. Attacks also continued in either one ear or both, and it looked as though I was going to lose my hearing altogether. Had been taking oral prednisone for the ear problems until I was finally diagnosed with Cogan's 7 months into the illness. At that point I began getting steroid injections into my ear and that has virtually saved my hearing. Attacks continued over the next couple of years (which is also about how long it took me to be able to walk normally again) and have gradually become less frequent and less aggressive. These days I'm doing really well and have most of my hearing back.

That's a rough outline of what happened to me, but as I said before, the stories I have heard are very varied. In my case, there were suspicions about me having Cogan's before I was actually diagnosed, but they really needed to see the pattern unfold before they could confirm that idea.

Your situation sounds tricky to know what's going on. I can't emphasise enough to get to an ear doctor ASAP if you develop any hearing loss/balance problems etc. I hope it all goes OK for you. Do you know exactly what type of eye inflammation you had in the past?

I hope that has answered your question. Let me know if there's anything else you want to know.

bcruth4 · 01-30-2004, 01:45 PM

Quote:

Originally Posted by susie141

OK...it all began very suddenly about 4 years ago. I had had blocked ears for a week, which was annoying but seemingly trivial. Then, all of a sudden one day I felt really sick and incredibly tired. Slept and slept and woke the next day to discover I had lost my sense of balance (couldn't walk by myself) and couldn't hear properly. I had an incredible tiredness and had also developed tinnitus. My hearing (both ears) and other symptoms worsened over the next couple of days, so I was treated with oral prednisone and serc, although doctors thought I had labyrinthitis.

Recovery from that attack was very gradual and I was virtually out of action for about 3 months. During that time, I developed a red inflammed eye, which after many eye hospital visits was diagnosed as uveitis/interstitial keratitis and treated with steroid creams and drops. Had heaps of blood tests and eye exams, but docs were hesitant to give a definite diagnosis. Over the next 6 months I had multiple similar attacks in first one eye, and then both. Attacks also continued in either one ear or both, and it looked as though I was going to lose my hearing altogether. Had been taking oral prednisone for the ear problems until I was finally diagnosed with Cogan's 7 months into the illness. At that point I began getting steroid injections into my ear and that has virtually saved my hearing. Attacks continued over the next couple of years (which is also about how long it took me to be able to walk normally again) and have gradually become less frequent and less aggressive. These days I'm doing really well and have most of my hearing back.

That's a rough outline of what happened to me, but as I said before, the stories I have heard are very varied. In my case, there were suspicions about me having Cogan's before I was actually diagnosed, but they really needed to see the pattern unfold before they could confirm that idea.

Your situation sounds tricky to know what's going on. I can't emphasise enough to get to an ear doctor ASAP if you develop any hearing loss/balance problems etc. I hope it all goes OK for you. Do you know exactly what type of eye inflammation you had in the past?

I hope that has answered your question. Let me know if there's anything else you want to know.

I can't thank you enough!!! I haven't had diminished hearing, just loud tinnitus. My eye doctor belives I have allergies, but I've been tested for every common allergy and they were all negative. My eye doc knows I had sudden onset tinnitus, but he has never correlated that to my eye problems. I've never had balance problems.

Is your tinnitus better now than in the beginning?