Adjustment to late onset deafness

My CV nerve is damaged, too, along with my facial nerve on one side. Life is a funny series of odd injuries and falling over. But I always get up! :giggle:
 
Like your outlook

Thats the one thing I try hard not to lose is my sense of humor. There is a saying" that im often reminded of from my Irish Carholic Mom "God never gives you more than you can handle". I think he's not paying attention, because I've had enough. Can't handle anymore. I pass.....:wave::wave:
 
Bottesini, I'm sorry we got off to a bad start. I apologies for that. I was in a very dark place. I know there are many with other medical issues but sometimes I feel like death is my only salvation. It took a lot for me to ask for help and I feel you can do this.,I hope we're OK now???????
 
Is there someplace to go to help understand how to follow my posts my brain is still recovering and I forget from day to day. I never really used computers before this, sounds sort of funny since its probably the most common communication tool today. I really have found comfort here thank you everyone!! Some people have asked me if I knew I spelt Angel wrong. It was supposed to be Angel1989 in memory of my son Brian who past away.
 
Cheetah, I sent you a private message that I think I was trying to reply to a post by candy123. Sorry.
 
Wirelessly posted (Backberry)

I already replied to you. If you don't like the answer I gave you, just delete it. No worries.
 
Liked your info

I enjoyed your post. I just felt stupid sending a message to the wrong person, that's all.:angel:
 
Angle1989 said:
I enjoyed your post. I just felt stupid sending a message to the wrong person, that's all.:angel:
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If you pretend it was what you intended... then you will not need to feel "stupid" because nobody would ever know! :D

The next time you visit a doctor.... Pretend you are queen for the day and everyone you meet is going to take care of you. Stand up tall and proud, because as queen you deserve it. negative energy attracts more negative energy. Feed people positive energy and watch them glow!
 
Angle -- here's my two cents on tinnitus. Anytime someone gets it for the first time or they experience a sudden change in their tinnitus they should go to an otoneurologist (a doctor that specializes in the interface between the ear and the brain) or ENT and get whatever can be ruled out, ruled out. For example
pressure problems in the Eustachian tubes connecting your middle ears to your throat, an increase of fluid in your inner ears (Meniere's disease) or any other condition that disturbs the fluid pressure in your inner ears. In addition, tinnitus may be caused by tumors on your auditory nerves (acoustic neuroma)
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As an example, I have always been hard of hearing but a few years ago I experienced a drop in hearing in my right ear along with changes in my tinnitus in the same ear. It became louder in what I estimate to be the middle frequencies. I went to an otoneurologist and he recommended I go on steroids for a short period of time.* Both my hearing and tinnitus went back to what it was before.

Often after an otoneurologist or ENT rules out causes that can be dealt with either surgically or medically you (generic you, not specific you) may still have tinnitus. This is because as others have explained upthread, tinnitus is often a symptom of inner ear hearing loss. Much like an amputee will sometimes still experience feeling in their no longer existing limb, a person with inner ear hearing loss will often experience hearing phantom sounds, or sounds that other people can't hear. In rare cases it can even sound like music or the background chatter of a radio station.

For many people it can be enough for them to know that this is their new "normal". Once they understand that, they can relax and get use to it. Some people need help getting use to it and will try meditation. Other people will opt for white noise machines.

If you have finished ruling out medical conditions that require surgical or medical treatment, I hope you will be able to relax and get use to it.

I know it must sound weird for someone new to tinnitus, but if you don't consciously think about it, my experience has been that it starts to sound quieter and becomes part of the background. When I think about it then I become aware of how loud it is and how many different sounds I'm hearing that no one else is. Thinking about it moves it into the foreground and makes me more aware of it. I have gotten pretty good at ignoring and it almost never bothers me though, if I stop to think about it, I always "hear" it. In fact, I can't remember a time that I have never had tinnitus. But it doesn't bother me.

And some people even learn how to use it to their benefit!

Musical Ear syndrome has been around for a long time. Composer Robert Schumann also heard auditory hallucinations toward the end of his life. At night, he heard musical notes and believed that he heard an angelic choir singing to him. He also heard the music of Beethoven and Schubert. He jotted down the music in February, 1854 and called it the Theme (WoO, 1854). He said he was taking dictation from Schubert's ghost.
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I wouldn't mind having that kind of tinnitus! :)

Hope my two cents helps.


--


* FWIW, my understanding is that ENTs don't know how many times steroids are responsible for reversing the decline in hearing loss or if the loss would have reversed anyway on its own. But despite that, many ENTs will prescribe steroids when someone experiences sudden hearing loss.
 
Thanks JazzBerry for the info, very helpful. Some think this is all I dwell on but it's not. I have a full and very happy life. This illness was sudden and thru us all into a tail spin. I actually enjoy the "music" since I can't listen to my stereo now. It's the head pressure that scares me and is hard to get a grip on. Most won't believe this but I am still the one who makes everyone laugh. I love humor. I do stand tall and am proud of myself. Just wanted to know what's "normal" on this voyage. If you ever need a laugh let me know. I have some very funny stories!!!
 
Angle1989 said:
Thanks JazzBerry for the info, very helpful. Some think this is all I dwell on but it's not. I have a full and very happy life. This illness was sudden and thru us all into a tail spin. I actually enjoy the "music" since I can't listen to my stereo now. It's the head pressure that scares me and is hard to get a grip on. Most won't believe this but I am still the one who makes everyone laugh. I love humor. I do stand tall and am proud of myself. Just wanted to know what's "normal" on this voyage. If you ever need a laugh let me know. I have some very funny stories!!!
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Oh, I can imagine your world turning upside down with a sudden unexpected hearing loss. That must have been a major change. I know two other people IRL who experienced that and they adjusted. They did not take the Deaf approach but they did adjust and AFAICT, they are happy. And there have been plenty of examples of posters here who have adjusted to late onset deafnesses and it hasn't stopped them from being happy either.

I missed the part about the head pressure. I've not heard about that symptom from any people I know with hearing loss -- I think I would want to get an answer about that also.

As for funny stories -- I'm always up for a laugh! Start a thread! :)
 
I've got major ear pressure today. I think that I over did it today. It's worse when I'm exhausted.
 
Angle1989 said:
Bottesini, I'm sorry we got off to a bad start. I apologies for that. I was in a very dark place. I know there are many with other medical issues but sometimes I feel like death is my only salvation. It took a lot for me to ask for help and I feel you can do this.,I hope we're OK now???????
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Hey, no problem. I'm glad you stuck around despite a rough start.

However the bolded part is enough to make me feel concerned for you. Are you dealing with depression? it can be devastating and it can seem like there's no light at the end of the tunnel. I know some on this forum who can give you advice on how to deal with that.

I have no idea what it's like to have normal hearing and then lose it literally overnight but I would imagine that it's devastating to someone who enjoyed music and stuff. The good part is that there are other deaf on this forum who had similar experiences wih you. And it'd be enough to cause depression.

As for me, I've never had normal hearing so this is something that's hard for me to truly understand. That doesn't mean that I'm unsympathetic to what happened to you.

I hope to see you around this forum and let me know how you are feeling. :wave:
 
Angle1989 said:
<snip> It's the head pressure that scares me and is hard to get a grip on. <snip>
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Angle, by head pressure are you referring to pressure in the ears like some people get when landing from a long airplane flight?

Perhaps you have Eustachian tubes issues.

Another thought, what kind of experience does your ENT have? Believe it or not, not all ENTs have a lot of experience with hearing loss. Otolaryngology is a specialty that covers a very large area. Some ENTs do very little work with hearing loss.

If you live in an area that has otoneurologists -- I would start with that kind of specialist. If not, try to make sure that the ENT you go to has a lot of experience with hearing loss and, better yet, with people that have your type of symptoms.
 
It dosent feel like it's just coming from my ears. It feels like my brain is bigger than my head.(hard to believe) does cause some ear pain also. I see a ENT with neurology background on 12/13. I've been waiting for months.

Here's a funny: I have a 4lb dog "Marley" she loves to play fetch with a small tennis ball. I received a large yellow exercise ball from physical therapy. Blew it up and threw it on the ground and said fetch. She freaked out. I had to hide the ball. Mean but a little funny.

I tried voice to type software. My husband was telling me what my mom said... It came out "your mom says she wants to rub the tatoo on my butt" so funny. My mom is Irish with a very strong brog. Haven't tried her talking into it yet. If you didn't know there were troubles with the software it would be a very funny Thanksgiving!!!

Hope to make you smile. Angle (yes I spelt Angel
wrong in error on my sign up) what a goof!!!L
 
Angle1989 said:
It dosent feel like it's just coming from my ears. It feels like my brain is bigger than my head.(hard to believe) does cause some ear pain also. I see a ENT with neurology background on 12/13. I've been waiting for months.

Here's a funny: I have a 4lb dog "Marley" she loves to play fetch with a small tennis ball. I received a large yellow exercise ball from physical therapy. Blew it up and threw it on the ground and said fetch. She freaked out. I had to hide the ball. Mean but a little funny.

I tried voice to type software. My husband was telling me what my mom said... It came out "your mom says she wants to rub the tatoo on my butt" so funny. My mom is Irish with a very strong brog. Haven't tried her talking into it yet. If you didn't know there were troubles with the software it would be a very funny Thanksgiving!!!

Hope to make you smile. Angle (yes I spelt Angel
wrong in error on my sign up) what a goof!!!L
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ENT with a neuro background? That sounds promising. A good audiologist that gives the full range of tests can do a lot of diagnosing too. AFAIK, an ENT will rely upon those tests before deciding whether to go ahead and order additional tests. I hope your appt on the 13th will be the start of your getting more answers. It must be frustrating to still have so many questions.

It was creative of you and your husband to try out voice to text software but I guess you found out that it doesn't always work. Hope your mom has a sense of humour also! :)

In the meantime you will probably want to get familiar with other assistive listening devices (ALDs). Just start googling. Harris Communications is a good example of a online catalog.

Basically ALDs can be divided into two cateogories: 1) those that make sounds louder or more accessible somehow and 2) those that provide alternative signals for sound. If you are completely deaf than you'll be interested in the latter. A system that will flash lights when your doorbell is being rung or your alarm, smoke alarm or TTY is ringing is an example. Some of them will also vibrate a disk that is placed under your mattress also. I recommend getting that.

I also recommend doing a lot of reading both at this forum and other web sites for people who are deaf or have hearing loss. There is a lot of info to absorb. Check meetup.com, HLAA and ALDA to see if there are deaf or HH organizations that meet IRL near you.

Perhaps other people here can recommend other groups to look for.
 
Did you like my "funnies". I hope so.
I have learned more tonight tharen in the past six months. Thanks everyone. I feel hopeful and excited to meet new friends who can relate.
 
Head hurts!!

I'm in California and its early. My head hurts so I have to say good night. I'll sleep better knowing there are people who care!!! You have all been so nice and helpful. Hopefully I'll talk to you tomorrow. If not have a wonderful Thanksgiviing. My first holiday being deaf. I'm not scared now I feel confident that I can do it because of you.:angel:
 
Angle1989 said:
I'm in California and its early. My head hurts so I have to say good night. I'll sleep better knowing there are people who care!!! You have all been so nice and helpful. Hopefully I'll talk to you tomorrow. If not have a wonderful Thanksgiviing. My first holiday being deaf. I'm not scared now I feel confident that I can do it because of you.:angel:
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Talk to your Dr about your migraines. The migraines might be related to your hearing loss.
 
Migraines?

Thanks for the advice. But, I don't feel this is migraines? It's constant pressure in my head that I have had since my illness and seems to be getting worse. I will ask the brain doc that question though. Thanks
 
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