goodness!

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HOH33stars

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Hey all!
So...last week I went to an ENT...who didn't even see me because he reviewed my audiograms and said he wasn't specialized enough to help me. SO I had an emergency appointment set up with an Otologist who I just saw today (4 hours from my college...gotta love insurance politics anyway...)
Went in and I was there from 8:45-12! Went through a crap load of testing had a TON of blood drawn (over 10 vials...i was shocked I had any left to give!)...and walked out finding out that I have to return again in two weeks.
It was a confirmed sensorineural bilateral loss (which we already kinda knew...we thought that it was mixed though before...anyway)...and it's quite concerning though that I've lost another 20db within a few months. I'm now in the moderate-severe range whereas before I was mild-moderate...then to moderate. SO ANYWAY...
They're thinking that this is an autoimmune disorder? Has anyone experienced this or have any insight to shed some light...I'm rather scared to be honest. They're talking about putting me on steroids...heck i'm a 22 young healthy female in college...this freaks me out. I guess we'll find out the results of the tests soon...
He did say that i should give my hearing aids back since they're still on trial and go with a set of loaners from my audi until we get this figured out. Basically my audi said that the ones i have now were good for my previous loss, but if it goes down any further she can't max them out anymore (which pisses me off because i had specifically asked that if these ones would be able to be adjusted for future loss)...
He said i HAVE to wear my hearing aids all the time so i'll definitely be able to tell if my hearing has changed any...there's a big concern that i'll lose quite a bit to where i'm deaf by december...
i seriously just want all of this to calm down so i can deal with it!
 
Sorry for your news. I can't give much comfort other than to say you will learn to cope. There are many worse things that could happen. You will be fine.

I know one other person with autoimmune hearing loss here, but sadly he is kind of a grumpy guy and got banned.

Maybe someone else has that here and will come and talk to you soon , I hope.

Hang in there. :)
 
Sorry you are having to go through all this.

Your story is similar to mine in that I lost my hearing rather quickly. Started with ringing and pressure for about 10 months. The last 8 months of the progression, I was at the Audi every other week getting my HA adjusted.

One of the last steps for me was to do the 2 weeks of steroids to see if it would stop the progression of the loss as that did work in the past. This time for me, it did not work as hoped and my hearing continued to degrade.

The good from all this is it allowed me to qualify for a CI. I can say that with the couple HA's I had, the quality of sound is considerably better with the CI than it ever was with a HA.

I hope you and your Dr's will be able to get your situation under control and stop the roller coaster. If it continues, maybe you will be able to benefit from a CI.

Steve
 
I just wanted to comment on the hearing aid situation.

A) it is un-realistic to expect to use the same hearing aid for a mild-moderate loss and a severe-profound loss.

The way a normal aid and a power aid process sound is different. A power aid set to a mild-moderate loss is going to sound funny, and same thing goes for a normal programmed for a severe-profound loss.

Also, it is uncomfortable to listen to a normal aid that is maxed out. I had used an aid designed for a moderate loss bumped up to attempt to fit my profound loss and the result wasn't good. I was dizzy, had headaches, my tinnitus was really bad, and it didn't help me hear squat!

Now with Naidas (power aids) I don't have those issues. I am comfortable wearing them and I can actually hear something.

Don't blame it on the audiologist.

Second, like Bott I can't give you pitty. I think you will adjust and move on with your life and find the best solution for you. Good luck
 
The advice JennyB has given you is excellent.

I can tell you from my own experience that less powerful aids fitted for a severe-profound loss do absolutely no good. Back in 1999 just before I received my Oticon digitals, my inexperienced audi gave me a pair of Siemen BTEs that were designed for a moderate loss. (Hello?! I have a severe-profound hearing loss.) The audi insisted that I try them, so I took them home for a week. I couldn't hear, had the volume turned up as far as it could go and experienced painful migraines as a result of trying to listen so intently. I gave up on the aids after only 24 hours. When I returned to the audi, he said it was obvious that the aids would not work for my loss (Duh! I could have told him that.), so he switched me to a pair of Oticon DigiFocus II super power digital aids. Even though they did not help me understand speech, they were much better than the Siemen aids because I didn't have to work so hard to hear. When you meet with your audi, make sure to get aids that are designed for severe-profound hearing loss. That way, if your hearing continues to change (which you've said is a good likelihood), you still have plenty of room for more amplification.

I can understand how frightening it must be to rapidly lose your hearing without there being a cause. If I were you, I would start learning ASL so that if/when the time comes that your aids are no longer effective, you still have a means of communication.
 
Sudden hearing loss is quite frightening and can leave you with all sorts of emotions. I know..been there, done that.
Three years ago I had "normal" hearing and now I have profound hearing loss in both ears with virtually no comprehension of speech in either ear. One ear went first, and the other ear hung on till about 9 months ago when it started to go down hill...fast. ASL is great if you have folks around you that understand it and use it. Not much good, no offense people, if you live in a world of hearing people that have no clue. As for speech reading, it takes time and although I do my best, I am often at a loss, even with my husband, bless his heart, who speaks to my face and tries to enunciate. If there are any courses in your area for speech reading, take them, and if you live around those that use ASL, take those courses too. Give yourself every advantage you can.
And, if you get depressed..that is fine, it is expected as long as you can shake it off and get back to living. If you can't, seek help.
I hope they find the reason behind your hearing loss. They may not be able to bring it back, but they may be able to stop it from getting worse.
As for the steroids, there are studies where in some cases it has "kick started" hearing again. So, worth a try, even if it doesn't work. If you were to take it for a long time, the effects could be bad, but for a few months or less it should be ok. Just make sure they "wean" you off the pills. DO NOT stop taking them without doctors permission and the reduced dosages. That is what causes the most problems. Do expect some weight gain if you are on them longer than a few weeks. It is normal, but should reverse once you are weaned off them.
And hang in there..life goes on and we all adjust in our own way.
 
etalton said:
Sudden hearing loss is quite frightening and can leave you with all sorts of emotions. I know..been there, done that.
Three years ago I had "normal" hearing and now I have profound hearing loss in both ears with virtually no comprehension of speech in either ear. One ear went first, and the other ear hung on till about 9 months ago when it started to go down hill...fast. ASL is great if you have folks around you that understand it and use it. Not much good, no offense people, if you live in a world of hearing people that have no clue. As for speech reading, it takes time and although I do my best, I am often at a loss, even with my husband, bless his heart, who speaks to my face and tries to enunciate. If there are any courses in your area for speech reading, take them, and if you live around those that use ASL, take those courses too. Give yourself every advantage you can.
And, if you get depressed..that is fine, it is expected as long as you can shake it off and get back to living. If you can't, seek help.
I hope they find the reason behind your hearing loss. They may not be able to bring it back, but they may be able to stop it from getting worse.
As for the steroids, there are studies where in some cases it has "kick started" hearing again. So, worth a try, even if it doesn't work. If you were to take it for a long time, the effects could be bad, but for a few months or less it should be ok. Just make sure they "wean" you off the pills. DO NOT stop taking them without doctors permission and the reduced dosages. That is what causes the most problems. Do expect some weight gain if you are on them longer than a few weeks. It is normal, but should reverse once you are weaned off them.
And hang in there..life goes on and we all adjust in our own way.
Click to expand...

what is the cause of your hearing loss?
i go back this friday to see the specialist again...is it possible to have an autoimmune disorder without testing positive?
how did you cope with all of this? i'm finding myself retreating into a shell rather quickly...
 
Hear Again said:
The advice JennyB has given you is excellent.

I can tell you from my own experience that less powerful aids fitted for a severe-profound loss do absolutely no good. Back in 1999 just before I received my Oticon digitals, my inexperienced audi gave me a pair of Siemen BTEs that were designed for a moderate loss. (Hello?! I have a severe-profound hearing loss.) The audi insisted that I try them, so I took them home for a week. I couldn't hear, had the volume turned up as far as it could go and experienced painful migraines as a result of trying to listen so intently. I gave up on the aids after only 24 hours. When I returned to the audi, he said it was obvious that the aids would not work for my loss (Duh! I could have told him that.), so he switched me to a pair of Oticon DigiFocus II super power digital aids. Even though they did not help me understand speech, they were much better than the Siemen aids because I didn't have to work so hard to hear. When you meet with your audi, make sure to get aids that are designed for severe-profound hearing loss. That way, if your hearing continues to change (which you've said is a good likelihood), you still have plenty of room for more amplification.

I can understand how frightening it must be to rapidly lose your hearing without there being a cause. If I were you, I would start learning ASL so that if/when the time comes that your aids are no longer effective, you still have a means of communication.
Click to expand...

i have a few Deaf friends who i speak with in ASL (the limited amount i have, but slowly my vocabulary is growing to the point i can carry on a pretty good conversation now...receptive wise they don't even speak to me verbally now...getting there...slowly but surely!)...
i'm also a double major here at school: Deaf Education (ironically...) and Art Education...i've been using an interpreter who has been "mouthing the words" and signing to me to make up for what i don't catch...
this is just petrifying since i got tested first in june and it was only a mild to moderate loss and now it's moderate to severe...
 
JennyB said:
I just wanted to comment on the hearing aid situation.

A) it is un-realistic to expect to use the same hearing aid for a mild-moderate loss and a severe-profound loss.

The way a normal aid and a power aid process sound is different. A power aid set to a mild-moderate loss is going to sound funny, and same thing goes for a normal programmed for a severe-profound loss.

Also, it is uncomfortable to listen to a normal aid that is maxed out. I had used an aid designed for a moderate loss bumped up to attempt to fit my profound loss and the result wasn't good. I was dizzy, had headaches, my tinnitus was really bad, and it didn't help me hear squat!

Now with Naidas (power aids) I don't have those issues. I am comfortable wearing them and I can actually hear something.

Don't blame it on the audiologist.

Second, like Bott I can't give you pitty. I think you will adjust and move on with your life and find the best solution for you. Good luck
Click to expand...

i understand.
i'm not blaming it on my audi...there's no way anyone could have known this was going to happen. i just want this to stop for a second so i can breathe and try to accept what is going on. after this is over i have this feeling i'm going to be petrified to see doctors or audis again...i already dread going to see them now...
 
HOH33stars said:
i understand.
i'm not blaming it on my audi...there's no way anyone could have known this was going to happen. i just want this to stop for a second so i can breathe and try to accept what is going on. after this is over i have this feeling i'm going to be petrified to see doctors or audis again...i already dread going to see them now...[/QUOTE]


I used to feel the exact same way as a kid growing up.
Click to expand...
 
HOH33stars said:
i have a few Deaf friends who i speak with in ASL (the limited amount i have, but slowly my vocabulary is growing to the point i can carry on a pretty good conversation now...receptive wise they don't even speak to me verbally now...getting there...slowly but surely!)...
i'm also a double major here at school: Deaf Education (ironically...) and Art Education...i've been using an interpreter who has been "mouthing the words" and signing to me to make up for what i don't catch...
this is just petrifying since i got tested first in june and it was only a mild to moderate loss and now it's moderate to severe...
Click to expand...

I can only imagine how you must be feeling. Try to hang in there! You'll be okay -- especially since you know sign. Keep practicing! You'll get better with time.

When I had a moderately-severe loss, I didn't even know sign. I struggled to hear in noisy environments and because I can't see to lipread, it was very difficult for me to communicate.

I didn't start to learn sign until my loss was severe-profound. Even then (I'm not ashamed to admit this), I was hospitalized for a few days because of depression due to my progressive hearing loss. It was the staff of the hospital as well as the psychiatrist who recommended I contact the Center for Deaf-Blind in my area for further training.

If it weren't for that recommendation, I don't know where I'd be today. Learning tactile sign has been a real lifesaver for me. I had severe-profound hearing loss for 10 years prior to receiving my CIs and communicated in sign for 6 out of those 10 years.

I'll never forget the time I used a tactile terp at an AADB (American Association of the Deaf-Blind) convention. For the first time in I don't know how long, I was able to understand everything that was communicated to me.

I wish you all the best with your efforts to learn sign. Believe me, it will get much easier over time.

By the way, I think it's great that you're majoring in Deaf Education. I wish I could change my major to Deaf Ed, but I don't think my VR counselor would allow that. (I've already changed my majors from journalism/mass communications to advertising to medical transcription to education and finally to social work. I should add that I had to change majors because of my progressive hearing loss.)

I hope you'll keep us updated on how you are doing!
 
Hear Again said:
I can only imagine how you must be feeling. Try to hang in there! You'll be okay -- especially since you know sign. Keep practicing! You'll get better with time.

When I had a moderately-severe loss, I didn't even know sign. I struggled to hear in noisy environments and because I can't see to lipread, it was very difficult for me to communicate.

I didn't start to learn sign until my loss was severe-profound. Even then (I'm not ashamed to admit this), I was hospitalized for a few days because of depression due to my progressive hearing loss. It was the staff of the hospital as well as the psychiatrist who recommended I contact the Center for Deaf-Blind in my area for further training.

If it weren't for that recommendation, I don't know where I'd be. Learning tactile sign has been a real lifesaver for me. I had severe-profound hearing loss for 10 years prior to receiving my CIs and communicated in sign for 6 out of those 10 years.

I'll never forget the time I used a tactile terp at an AADB (American Association of the Deaf-Blind) convention. For the first time in I don't know how long, I was able to understand everything that was communicated to me.

I wish you all the best with your efforts to learn sign. Believe me, it will get much easier over time.

By the way, I think it's great that you're majoring in Deaf Education. I wish I could change my major to Deaf Ed, but I don't think my VR counselor would allow that. (I've already changed my majors from journalism/mass communications to advertising to medical transcription to education and finally to social work. I should add that I had to change majors because of my progressive hearing loss.)

I hope you'll keep us updated on how you are doing!
Click to expand...

Thank you so much!
Heh I had actually declared Deaf Education BEFORE any of this even started...now it's all just quite ironic that it's happening...
a friend recommended that i see someone to just "talk things out" about all of this since i'm internalizing it all and as a result some old bad habits are coming back out...i don't know though...i'm at school and i've never seen a therapist or anyone like that before...
 
HOH33stars said:
i understand.
i'm not blaming it on my audi...there's no way anyone could have known this was going to happen. i just want this to stop for a second so i can breathe and try to accept what is going on. after this is over i have this feeling i'm going to be petrified to see doctors or audis again...i already dread going to see them now...
Click to expand...

I know how you feel about going to the audi. I felt the same way when my hearing continued to decline from 1985 onward.
 
U are majoring in Deaf ed? Cool! I have a MA degree in Deaf Ed. :)
 
HOH33stars said:
Thank you so much!
Heh I had actually declared Deaf Education BEFORE any of this even started...now it's all just quite ironic that it's happening...
a friend recommended that i see someone to just "talk things out" about all of this since i'm internalizing it all and as a result some old bad habits are coming back out...i don't know though...i'm at school and i've never seen a therapist or anyone like that before...
Click to expand...

You're welcome! :)

I think seeing a therapist would be a great idea.

I have bipolar disorder and see a therapist on a bi-weekly basis to discuss my medication, my moods and life in general. (It helps keep me grounded and avoid severe depression that bipolars are prone to.) In our sessions, we discuss how I'm handling my hearing loss (since I don't hear perfectly with my CIs and have difficulty hearing in noisy environments) and I've found it to be of tremendous help.

I might as well be honest and tell you that I've been in therapy since the early 90s when my hearing started to take a real nosedive.

I don't think there's any shame in seeing a therapist (note than I'm not incinuating that you are implying this -- I'm saying this more for the benefit of other ADers who may be currently experiencing depression because of hearing loss).

Even though I had an extremely difficult time coming to terms with my hearing loss, I slowly learned how to accept it and get on with my life. And for that, I'm truly thankful.
 
HOH33stars said:
really?? Where did you get it from? What do you do now?
Click to expand...

I got my Master's from Gallaudet University and now I am a teacher teaching deaf 4th graders. Love it! :) Been profoundly deaf since birth.
 
Hear Again said:
You're welcome! :)

I think seeing a therapist would be a great idea.

I have bipolar disorder and see a therapist on a bi-weekly basis to discuss my medication, my moods and life in general. (It helps keep me grounded and avoid severe depression that bipolars are prone to.) In our sessions, we discuss how I'm handling my hearing loss (since I don't hear perfectly with my CIs and have difficulty hearing in noisy environments) and I've found it to be of tremendous help.

I might as well be honest and tell you that I've been in therapy since the early 90s when my hearing started to take a real nosedive.

I don't think there's any shame in seeing a therapist (note than I'm not incinuating that you are implying this -- I'm saying this more for the benefit of other ADers who may be currently experiencing depression because of hearing loss).

Even though I had an extremely difficult time coming to terms with my hearing loss, I slowly learned how to accept it and get on with my life. And for that, I'm truly thankful.
Click to expand...

Thank you so much...I'm definitely going to take what you said to heart and think on it *hugs*
 
Hear Again said:
You're welcome! :)

I think seeing a therapist would be a great idea.

I have bipolar disorder and see a therapist on a bi-weekly basis to discuss my medication, my moods and life in general. (It helps keep me grounded and avoid severe depression that bipolars are prone to.) In our sessions, we discuss how I'm handling my hearing loss (since I don't hear perfectly with my CIs and have difficulty hearing in noisy environments) and I've found it to be of tremendous help.

I might as well be honest and tell you that I've been in therapy since the early 90s when my hearing started to take a real nosedive.

I don't think there's any shame in seeing a therapist (note than I'm not incinuating that you are implying this -- I'm saying this more for the benefit of other ADers who may be currently experiencing depression because of hearing loss).

Even though I had an extremely difficult time coming to terms with my hearing loss, I slowly learned how to accept it and get on with my life. And for that, I'm truly thankful.
Click to expand...

Wonderful post! Ironically, I went to therapy because I grew up being ashamed of my deafness and trying to be "hearing" to fit in the world I was thrust in.
 
shel90 said:
I got my Master's from Gallaudet University and now I am a teacher teaching deaf 4th graders. Love it! :) Been profoundly deaf since birth.
Click to expand...

A few of my friends have suggested that I should go to Gallaudet after I finish my undergraduate. We'll see :)
Did you do your undergrad in Deaf Education also?
 
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