OneWorriedMom
08-12-2005, 05:22 PM
Hello. I've been told I may have Autoimmune Inner Ear Disease (AIED). Is there anyone else out there going through this?
My biggest complaint has been vertigo for the last 5 months or so along with tinnitus. My hearing is ok so far on paper, I guess you could say. But I have awakened twice in the last 6 weeks or so with hearing loss in one ear. First, my left ear, then two weeks later my right ear. Both episodes only lasted about 60 seconds. I am also feeling more pressure and some discomfort in my ears lately. The caloric part of my ENG came back showing significant bilateral weakness. I should also mention that I have other autoimmune conditions.
I saw an ENT who is sending me to an otologist who specializes in autoimmune problems. I can't see this new doctor for almost 3 months. Meanwhile, the first ENT I saw said if I lose my hearing for more than 5 minutes to call him. That's not exactly a comforting thought.
Does anyone out there have any advice or experiences to share? There doesn't seem to be much information on the web about this, especially about patients' individual experiences.
Any information would be greatly appreciated. Thank you.
Alisa
My biggest complaint has been vertigo for the last 5 months or so along with tinnitus. My hearing is ok so far on paper, I guess you could say. But I have awakened twice in the last 6 weeks or so with hearing loss in one ear. First, my left ear, then two weeks later my right ear. Both episodes only lasted about 60 seconds. I am also feeling more pressure and some discomfort in my ears lately. The caloric part of my ENG came back showing significant bilateral weakness. I should also mention that I have other autoimmune conditions.
I saw an ENT who is sending me to an otologist who specializes in autoimmune problems. I can't see this new doctor for almost 3 months. Meanwhile, the first ENT I saw said if I lose my hearing for more than 5 minutes to call him. That's not exactly a comforting thought.
Does anyone out there have any advice or experiences to share? There doesn't seem to be much information on the web about this, especially about patients' individual experiences.
Any information would be greatly appreciated. Thank you.
Alisa
Sponsor
susie141
08-12-2005, 07:10 PM
Hi Alisa
I sympathise and know what you're going through. I have an autoimmune condtition (Cogan's Syndrome), part of which is autoimmune hearing loss. I've had it for 5 years now and fortunately the last year or so has been virtually problem free. But I went through the vertigo, tinnitus and many episodes of losing my hearing (and inflammatory eye problems due to the CS). It took about 2.5 years for me to be able to walk normally after the initial attack on my balance and my hearing loss episodes (which didn't recover spontaneously) were treated with injections of steroid into my ears. My biggest piece of advice is to seek help urgently if your hearing doesn't recover in a day. Early treatment is considered to be one of the reasons I can still hear now. I never got my natural sense of balance back but my brain adjusted to having no sense of balance in my ears.
Good luck and let me know if you have any questions.......Susie
Hello. I've been told I may have Autoimmune Inner Ear Disease (AIED). Is there anyone else out there going through this?
My biggest complaint has been vertigo for the last 5 months or so along with tinnitus. My hearing is ok so far on paper, I guess you could say. But I have awakened twice in the last 6 weeks or so with hearing loss in one ear. First, my left ear, then two weeks later my right ear. Both episodes only lasted about 60 seconds. I am also feeling more pressure and some discomfort in my ears lately. The caloric part of my ENG came back showing significant bilateral weakness. I should also mention that I have other autoimmune conditions.
I saw an ENT who is sending me to an otologist who specializes in autoimmune problems. I can't see this new doctor for almost 3 months. Meanwhile, the first ENT I saw said if I lose my hearing for more than 5 minutes to call him. That's not exactly a comforting thought.
Does anyone out there have any advice or experiences to share? There doesn't seem to be much information on the web about this, especially about patients' individual experiences.
Any information would be greatly appreciated. Thank you.
Alisa
I sympathise and know what you're going through. I have an autoimmune condtition (Cogan's Syndrome), part of which is autoimmune hearing loss. I've had it for 5 years now and fortunately the last year or so has been virtually problem free. But I went through the vertigo, tinnitus and many episodes of losing my hearing (and inflammatory eye problems due to the CS). It took about 2.5 years for me to be able to walk normally after the initial attack on my balance and my hearing loss episodes (which didn't recover spontaneously) were treated with injections of steroid into my ears. My biggest piece of advice is to seek help urgently if your hearing doesn't recover in a day. Early treatment is considered to be one of the reasons I can still hear now. I never got my natural sense of balance back but my brain adjusted to having no sense of balance in my ears.
Good luck and let me know if you have any questions.......Susie
Hello. I've been told I may have Autoimmune Inner Ear Disease (AIED). Is there anyone else out there going through this?
My biggest complaint has been vertigo for the last 5 months or so along with tinnitus. My hearing is ok so far on paper, I guess you could say. But I have awakened twice in the last 6 weeks or so with hearing loss in one ear. First, my left ear, then two weeks later my right ear. Both episodes only lasted about 60 seconds. I am also feeling more pressure and some discomfort in my ears lately. The caloric part of my ENG came back showing significant bilateral weakness. I should also mention that I have other autoimmune conditions.
I saw an ENT who is sending me to an otologist who specializes in autoimmune problems. I can't see this new doctor for almost 3 months. Meanwhile, the first ENT I saw said if I lose my hearing for more than 5 minutes to call him. That's not exactly a comforting thought.
Does anyone out there have any advice or experiences to share? There doesn't seem to be much information on the web about this, especially about patients' individual experiences.
Any information would be greatly appreciated. Thank you.
Alisa
OneWorriedMom
08-12-2005, 09:27 PM
Susie,
Thank you so much for taking the time to answer my post. It sounds like you have really dealt with so much. I'm sorry for all you've been through. I'm glad to hear the last year has been better for you.
I had never heard of Cogan's until I started researching AIED, even though I've read a great deal about other autoimmune problems. It sounds very difficult to handle. I hope you continue to do well.
Did you mind if I ask how your symptoms presented? Did you have a difficult time getting a diagnosis? Do you have any other autoimmune problems?
I've had some vertigo on and off the past few years, but it usually hung around a couple of weeks and was gone. 5 months ago it came back and has only briefly left. I think for the most part, my vestibular system has been affected gradually, so my body seems to be adjusting somewhat. Still the vertigo makes it very difficult to function sometimes.
The ENT wasn't totally sure what was going on, but he did seem to think it was autoimmune. I didn't catch everything he said, but I remember him mentioning prednisone and that this could be a long battle, etc etc. I was caught off guard because I wasn't expecting to hear anything serious.
I thought it was probably a med that I'm taking for rheumatoid arthritis/maybe lupus causing the vertigo.
I guess I'll just have to wait to see what the other doctor says. I'm trying not to worry too much because there isn't a whole lot I can do about it now anyway.
Thanks again! I hope to hear from you again! :)
Alisa
Thank you so much for taking the time to answer my post. It sounds like you have really dealt with so much. I'm sorry for all you've been through. I'm glad to hear the last year has been better for you.
I had never heard of Cogan's until I started researching AIED, even though I've read a great deal about other autoimmune problems. It sounds very difficult to handle. I hope you continue to do well.
Did you mind if I ask how your symptoms presented? Did you have a difficult time getting a diagnosis? Do you have any other autoimmune problems?
I've had some vertigo on and off the past few years, but it usually hung around a couple of weeks and was gone. 5 months ago it came back and has only briefly left. I think for the most part, my vestibular system has been affected gradually, so my body seems to be adjusting somewhat. Still the vertigo makes it very difficult to function sometimes.
The ENT wasn't totally sure what was going on, but he did seem to think it was autoimmune. I didn't catch everything he said, but I remember him mentioning prednisone and that this could be a long battle, etc etc. I was caught off guard because I wasn't expecting to hear anything serious.
I thought it was probably a med that I'm taking for rheumatoid arthritis/maybe lupus causing the vertigo.
I guess I'll just have to wait to see what the other doctor says. I'm trying not to worry too much because there isn't a whole lot I can do about it now anyway.
Thanks again! I hope to hear from you again! :)
Alisa
susie141
08-15-2005, 11:04 PM
I don't at all mind your asking about how my symptoms presented. It all happened very suddenly but I know that for others, the symptoms have presented much more gradually. Basically I had a week of thinking I just had a little trivial problem going on. I had distorted hearing which caused music to sound out of tune and people's voices to sound high and metallic. I felt fine. Then suddenly one day I felt really nauseated and extremely tired. I went to bed, slept 13 hours and woke up to find that I had lost my sense of balance and was losing my hearing in both ears. I felt nauseated and my ears were ringing. Doctors thought I had some kind of viral infection and I had many investigations because I got worse not better. Fortunately I was treated early with steroids even though no one really knew what was going on. My inflammatory eye problems started a couple of months into the ear problems and finally doctors started clicking to the idea of Cogan's. After 7 months of repeated attacks in the eyes and ears, an ENT confirmed what everyone had been suspicious of for some time, that I had Cogan's. I think making a diagnosis of autoimmune illnesses can be very difficult so I don't blame the doctors for this. In your case, it sounds to me too, that making a definite diagnosis is tricky. Often a longer path of ilness needs to be revealed before more can be determined. I don't have any other autoimmune problems.
Steroids are certainly a double edged sword and nobody would want to be on them for too long. That's why getting them injected straight into my ear was so helpful. With that method I didn't get all the horrible side effects that come with oral steroids. I used plenty of oral steroids too, but once we started the ear injections I was much better off.
I really hope your symptoms don't progress.
Best wishes, Susie
Susie,
Thank you so much for taking the time to answer my post. It sounds like you have really dealt with so much. I'm sorry for all you've been through. I'm glad to hear the last year has been better for you.
I had never heard of Cogan's until I started researching AIED, even though I've read a great deal about other autoimmune problems. It sounds very difficult to handle. I hope you continue to do well.
Did you mind if I ask how your symptoms presented? Did you have a difficult time getting a diagnosis? Do you have any other autoimmune problems?
I've had some vertigo on and off the past few years, but it usually hung around a couple of weeks and was gone. 5 months ago it came back and has only briefly left. I think for the most part, my vestibular system has been affected gradually, so my body seems to be adjusting somewhat. Still the vertigo makes it very difficult to function sometimes.
The ENT wasn't totally sure what was going on, but he did seem to think it was autoimmune. I didn't catch everything he said, but I remember him mentioning prednisone and that this could be a long battle, etc etc. I was caught off guard because I wasn't expecting to hear anything serious.
I thought it was probably a med that I'm taking for rheumatoid arthritis/maybe lupus causing the vertigo.
I guess I'll just have to wait to see what the other doctor says. I'm trying not to worry too much because there isn't a whole lot I can do about it now anyway.
Thanks again! I hope to hear from you again! :)
Alisa
Steroids are certainly a double edged sword and nobody would want to be on them for too long. That's why getting them injected straight into my ear was so helpful. With that method I didn't get all the horrible side effects that come with oral steroids. I used plenty of oral steroids too, but once we started the ear injections I was much better off.
I really hope your symptoms don't progress.
Best wishes, Susie
Susie,
Thank you so much for taking the time to answer my post. It sounds like you have really dealt with so much. I'm sorry for all you've been through. I'm glad to hear the last year has been better for you.
I had never heard of Cogan's until I started researching AIED, even though I've read a great deal about other autoimmune problems. It sounds very difficult to handle. I hope you continue to do well.
Did you mind if I ask how your symptoms presented? Did you have a difficult time getting a diagnosis? Do you have any other autoimmune problems?
I've had some vertigo on and off the past few years, but it usually hung around a couple of weeks and was gone. 5 months ago it came back and has only briefly left. I think for the most part, my vestibular system has been affected gradually, so my body seems to be adjusting somewhat. Still the vertigo makes it very difficult to function sometimes.
The ENT wasn't totally sure what was going on, but he did seem to think it was autoimmune. I didn't catch everything he said, but I remember him mentioning prednisone and that this could be a long battle, etc etc. I was caught off guard because I wasn't expecting to hear anything serious.
I thought it was probably a med that I'm taking for rheumatoid arthritis/maybe lupus causing the vertigo.
I guess I'll just have to wait to see what the other doctor says. I'm trying not to worry too much because there isn't a whole lot I can do about it now anyway.
Thanks again! I hope to hear from you again! :)
Alisa
susie141
08-15-2005, 11:07 PM
I don't at all mind your asking about how my symptoms presented. It all happened very suddenly but I know that for others, the symptoms have presented much more gradually. Basically I had a week of thinking I just had a little trivial problem going on. I had distorted hearing which caused music to sound out of tune and people's voices to sound high and metallic. I felt fine. Then suddenly one day I felt really nauseated and extremely tired. I went to bed, slept 13 hours and woke up to find that I had lost my sense of balance and was losing my hearing in both ears. I felt nauseated and my ears were ringing. Doctors thought I had some kind of viral infection and I had many investigations because I got worse not better. Fortunately I was treated early with steroids even though no one really knew what was going on. My inflammatory eye problems started a couple of months into the ear problems and finally doctors started clicking to the idea of Cogan's. After 7 months of repeated attacks in the eyes and ears, an ENT confirmed what everyone had been suspicious of for some time, that I had Cogan's. I think making a diagnosis of autoimmune illnesses can be very difficult so I don't blame the doctors for this. In your case, it sounds to me too, that making a definite diagnosis is tricky. Often a longer path of ilness needs to be revealed before more can be determined. I don't have any other autoimmune problems.
Steroids are certainly a double edged sword and nobody would want to be on them for too long. That's why getting them injected straight into my ear was so helpful. With that method I didn't get all the horrible side effects that come with oral steroids. I used plenty of oral steroids too, but once we started the ear injections I was much better off.
I really hope your symptoms don't progress.
Best wishes, Susie
[
Steroids are certainly a double edged sword and nobody would want to be on them for too long. That's why getting them injected straight into my ear was so helpful. With that method I didn't get all the horrible side effects that come with oral steroids. I used plenty of oral steroids too, but once we started the ear injections I was much better off.
I really hope your symptoms don't progress.
Best wishes, Susie
[
OneWorriedMom
08-17-2005, 01:59 PM
Susie,
Thanks so much for sharing your experience. You really went through some very difficult times. I'm glad the steroid injections worked for you. Steroids are so effective and so terrible at the same time. My 9 year old daughter was on prednisone for 6 months for juvenile arthritis. It worked great for her. She was running around and even playing soccer with no problems at all! Well, except for the side effect problems like difficulty sleeping, weight gain, etc. She is on Enbrel now which works well for her but not nearly as well as prednisone- not that I'd still want her on it. Prednisone can greatly effect the growth rate in kids as well as all the other side effects adults get.
So, do you have any symptoms at all now or is everything quiet? I hope you continue to do well!
Thank you again for sharing what you've been through.
Alisa
Thanks so much for sharing your experience. You really went through some very difficult times. I'm glad the steroid injections worked for you. Steroids are so effective and so terrible at the same time. My 9 year old daughter was on prednisone for 6 months for juvenile arthritis. It worked great for her. She was running around and even playing soccer with no problems at all! Well, except for the side effect problems like difficulty sleeping, weight gain, etc. She is on Enbrel now which works well for her but not nearly as well as prednisone- not that I'd still want her on it. Prednisone can greatly effect the growth rate in kids as well as all the other side effects adults get.
So, do you have any symptoms at all now or is everything quiet? I hope you continue to do well!
Thank you again for sharing what you've been through.
Alisa