Please Allow Me to Introduce Myself

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abbysmom

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Hello!
And thank you for such a diverse forum. I checked out a few others and this one was especially appealing.

First about me. Average person until about six months ago. I have severe seasonal allergies (what does this have to be with deafness???...just a sec...)The allergy attacks seemed unusually severe and tenacous. Not being a doctor person I waited until I woke up one morning two months later and could not hear a thing. Nothing, nada, etc. Of course I instantly became a doctor person.

To make a long story short, after more tests (and prednisone) than I can recall, the diagnosis is still fluctuating SSNHL in both ears. I had been affected by tinnitis in my left ear as long as I can remember and have probably been losing my hearing gradualy also. I have now developed tinnitis in both ears and while no one else semms to understand this, it is true. I have more than one sound in each ear. Like crickets and a low electrical hum at the same time in one ear. Since the left ear tinnitis is a life time friend, I have learned over the years how to manage it. (Actually, I have named him). The trouble is learning to manage more. I just can't seemed to get a handle on it.

There are days when you would not being to tell me apart from a hearing person. I can talk on the phone, watch tv with the family (w/o cc) but there are days I am almost nonfunctional from having almost no hearing and the noise inside. The doctors have not been too concerned about this or any other symptoms I have. Its as if they know they can't fix the ears and so why go any further. I am starting to get scared.

I have been told the CI won't help because the hearing does fluctuate nor will regular hearing aids.

My doctor's office called yesterday and said he wouldn't need to see me again for six months unless I developed problems. So where do I go from here?

I am not afraid, depressed or even angry. I am lost. If there is anyone out there that has the time and patience to answer the 4 gozillion or so questions I have. I promise to pass the knowledge on the next person who needs it. I am home all the time so if there are any volunteers, you will never be forgotten.

Thanks for your time.
 
:welcome: to AD! How often does this happen?
 
Hi Shel!

Thanks for replying. The fluctuations vary. I have listened to the tv at 10:00 in the morning and had to watch cc for the evening news. But it sometimes lasts for days. It changes at will.

I laugh about it now but the first time it happened, I went from really good hearing to not too good in 0.1 seconds. I was sooo mad. My son finally got the nerve to ask me why I was mad. Because it had sneaked up on me. That made the maddest of all. Like it was waiting for me to let my guard down.
 
abbysmom said:
Hi Shel!

Thanks for replying. The fluctuations vary. I have listened to the tv at 10:00 in the morning and had to watch cc for the evening news. But it sometimes lasts for days. It changes at will.

I laugh about it now but the first time it happened, I went from really good hearing to not too good in 0.1 seconds. I was sooo mad. My son finally got the nerve to ask me why I was mad. Because it had sneaked up on me. That made the maddest of all. Like it was waiting for me to let my guard down.
Click to expand...

very interesting...does that happen with a lot of people? I have heard of progressive hearing loss but flunctioning? That's new to me...I am sorry that u are going through that. I cant imagine what that must be like. I have been deaf since birth.
 
Hello and welcome to Alldeaf! Obviously, you're venturing in new territory, the unknown and zillions of questions unanswered--have you ever gotten a 2nd, even a 3rd medical opinion? As frantic and/or scared you may be now, rest assure that there is wonderful, caring members here in AD...to reach out to you, to at least ease you into a realm of 'not being alone'...until a solution is provided, please hang in there and take great care as well. Also, hope you'll enjoy your stay here in AD! :)

Have a great day! :wave:






~RR
 
abbysmom said:
Hello!
And thank you for such a diverse forum. I checked out a few others and this one was especially appealing.

First about me. Average person until about six months ago. I have severe seasonal allergies (what does this have to be with deafness???...just a sec...)The allergy attacks seemed unusually severe and tenacous. Not being a doctor person I waited until I woke up one morning two months later and could not hear a thing. Nothing, nada, etc. Of course I instantly became a doctor person.

To make a long story short, after more tests (and prednisone) than I can recall, the diagnosis is still fluctuating SSNHL in both ears. I had been affected by tinnitis in my left ear as long as I can remember and have probably been losing my hearing gradualy also. I have now developed tinnitis in both ears and while no one else semms to understand this, it is true. I have more than one sound in each ear. Like crickets and a low electrical hum at the same time in one ear. Since the left ear tinnitis is a life time friend, I have learned over the years how to manage it. (Actually, I have named him). The trouble is learning to manage more. I just can't seemed to get a handle on it.

There are days when you would not being to tell me apart from a hearing person. I can talk on the phone, watch tv with the family (w/o cc) but there are days I am almost nonfunctional from having almost no hearing and the noise inside. The doctors have not been too concerned about this or any other symptoms I have. Its as if they know they can't fix the ears and so why go any further. I am starting to get scared.

I have been told the CI won't help because the hearing does fluctuate nor will regular hearing aids.

My doctor's office called yesterday and said he wouldn't need to see me again for six months unless I developed problems. So where do I go from here?

I am not afraid, depressed or even angry. I am lost. If there is anyone out there that has the time and patience to answer the 4 gozillion or so questions I have. I promise to pass the knowledge on the next person who needs it. I am home all the time so if there are any volunteers, you will never be forgotten.

Thanks for your time.
Click to expand...

WELCOME TO AD.... it did happened to me... I was born HOH... but did not require hearing aids....until i was 35..i wore two hearing aids... it still kept flulcuating... now I stopped wearing hearing aids for 5 yrs.. i am deaf...I was lucky.. my parents were deaf... my first langauges are ASL.. i learned to speak at age of 5..so it was no big deal when i went deaf completely....
 
Hello again Shel,

Thanks for the caring. How many people are effected by this I have no idea. Thats one of the reasons I am on this forum. I am not vain nor stupid enough to think it could only happen to me. I guess I am just looking for proof from people with this problem that they are out there.

Hello Roadrunner,

Thank you for the warm welcome. As far as second or third opinions, I am forunate enough to live close to Wake Forest University School of Medicine. All of the tests and even I have been checked out by the entire great staff they have there. And that was after being treated by one of the top ENT in the area. And the diagnosis is fluctuating SSNHL by indeterminate cause. And I understand that. They can't tell me what they don't know. I'll just keep reading all of the members posts and hopefully find an answer or two there. Might even get up the nerve to ask a question or two.

Hello TweetyBird,

Thanks for the welcome.
 
welcome abbysmom

Perhaps you should take a more specific notice of when and/or where this incidence occurs. I'm assuming that the test they ran included MRI/MRA, possibly a CT scan as well to determine if the issue resides with either the brain, vessels, etc.. I'm also assuming that these test came back negative. Thus no action on the physician's part.

Your situation almost sounds like it could be excaserbated by external stimuli/stressors. So there may not be any indicated problems with the structure of the ear itself, but rather as something similar to a referral type symptoms (i.e., your hand hurts, but the injury/assult was from the shoulder)

Does this incidence occur with a specific stimuli, ie., certain type of noise, when under stress, thoughts, mood/feeling, time of day, time of year, when allergy is aggrevated, etc.., or is it just random with no set pattern. Sometimes symptoms may seem random but it follows a complex & subtle pattern that requires you to listen very carefully to it. Take notes(mental or actual) of when, how, frequenty, duration, is it progressive or just bottoms out immediately, etc... Also observe what you were doing prior, during or even what you are anticipating (i.e, you may be feeling overwhelmed or underlying stress).

This is one of those situations that you may need to play detective & take a proactive role so that someone may be able to use inductive reasoning to determine if there is an underlying problem that happens to utilize your hearing as a sypmtom. Even if no one seems to know what's going on now, you may run into someone that does & this information will provide more useful tool in addressing the problem. Did anyone you saw recommend a specialist or even provide a sound rationale of what's going on? It sounds like this type of situation is unfortunately going to take a trial & error proccess, so it may take some time, effort, $, spiritual well-being, etc...

Sometimes, there are cognitive induced type symptoms which can be triggerred such as someone with PTSD(post-traumatic stress disorder), when under increased stress(both good stress & bad stress), or any other past medical history, including those in the family. Has anyone in your family had any experience with any type of psychosis, depression, or any type of cognitive deficits? What about your lifestyle (health, spiritual well-being, social network, etc...)there are many questions that you probably should start thinking about that will allow you to take a more proactive role.
 
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