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egarber

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Posts: 12
Reply with quote  #1 
I am new to this message board. I was diagnosed with Miniere's Disease and I have Hyperacusis.  I came down with this in mid-Feb. and was so frightened that I stayed in bed alone for 2 months and reached the lowest point in my life.  After going to 2 Internists and 4 Otolarygologist I finally found a doctor I like.  He has not offered me treatment for the Hyperacusis and I am worried that I won't be able to work.  I am looking for support and information.  I am enjoying reading this message board.  It gives me hope!!  I had a Brain MRI and that came out fine.  The doctor wanted to give me and ECoG test, but it meant putting something in my ear that would make noise and I couldn't tolerate it.  I am going to find someone that will give the LDL test.  Any feedback would be very welcome.  My old life is gone out of the window and I have to build a new one.  Sounds like you have all been there too.

Elayne
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Marilyn

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Reply with quote  #2 
Hi Elayne and welcome.   I wish we all could have met under different circumstances than hyperacusis, but this message board and website had been a lifesaver for me.  I got your PM and sent you a reply. 

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saab1216

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Reply with quote  #3 

Egarber,Just curious...How is meneiers disease diagnosed? Does it show up in an MRI? Ive had mild cases of vertigo and still do but, my Mri Didnt show anything at all. I have Hyperacusis,tinnitus and Misophonia.

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egarber

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Reply with quote  #4 
Hi Saab,

My name is Elayne.  My first symptoms were a sudden hearing loss in one ear. It came back slowly, but I have some decibels that I don't hear well. This was in just one ear.  Then I started feeling pressure in that ear.  I have not been dizzy, thankfully.  I am on my 6th doctor.  The MRI was just to rule out anything else and that came out OK.  I started having buzzing in that ear and my nerves on that side of my head and face and on my neck hurt.  Along with this came the Hyperacusis.  I have never been so afraid in my life.  I spent two months in bed.  It was too noisy to leave my room.  The doctor has me on a low sodium diet. He also has me on Xanex.  I am working at keep stress away. Stress seems to be a big factor in all of this.  I used to be the one that everyone said was healthy, never sick a day, etc.   I have a list of what I can't eat. He also has me on a diuretic (water pill).  They ordered ear plugs for me that were made for my ears with a mold and they should help me to go places. I have not received them yet.  I am going to look into some of the treatment that I have been reading about on this website. One of the doctors on the list is right near me.   My life, just like everyone else on this website is now upside down.  I have not been able to work and I used to go the classes at the gym 5 times a week. That is over.  I missed a dance recital of my sister-in-law's granddaughter tonight. I usually go every year.  And on and on, but I will learn to adjust.  I am determined to get well enough to resume some activities, and to work again.  Anyway, my diagnosis of Meniere's was because of the pressure of fullness in my ear and the hearing loss that ended up fluctuating, and I guess the Hyperacusis.  What is Misophonia?
Hope this helps.  To answer your question, the MRI was just to rule anything else out.
Elayne
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Johnloudb

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Reply with quote  #5 

Hi Elayne,

I replied to you first post in another thread here:

http://www.chat-hyperacusis.net/post/show_single_post?pid=40236523&postcount=11

Just in case you missed that. Misophonia is dislike of sounds which includes Phonophobia (a fear of sounds). Most people understandably have some phonophobia along with hyperacusis, and that's one reason it's so important to learn all you can about this health problem. 

Dr. Hazell's site ( http://www.tinnitus.org  ) is good site to read about the Jastreboff model for hearing which describes the mechanism behind misophonia/phonophobia. 

Anyway, your in the right place to get help. Finding a good TRT doctor is really important and often has a big affect on how good your progress is. 

John


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gummiefruit

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Reply with quote  #6 

well heyy everybody i am new here and i am looking for some help with my problems. i can't stand to hear people eat or chew anything it drives me absolutly insane. anybody with any info about help with this would be greatly appreciated and i thank heavens for this website lol


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saab1216

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Reply with quote  #7 

 comment removed

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saab1216

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Reply with quote  #8 

Gummie fruit!!! Yes I know the distress of misophonia. it is what you describe perfectly. I hear "chewing like" sounds when people smack their lips next to me. it sounds like a dog licking his paws and is very revolting! i get so angered. The best thing i can do is plug my ears to this. This seems to be a growing problem for me that has separated me from wife and kids! It is a real problem it started from my bad case of hyperacusis last year and progressed. I don't think there are ant real answers to this because my audiologist suggested a psychologist for me.(she needs one, i feel.). It is a real physical condition with psychological ramifications.

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PositiveThinker

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Reply with quote  #9 
Hi everyone.  I'm new to this site as well.  And reading a few of your stories gives me hope - or at the very least it makes me feel comforted that other people do live (productively) with these hearing and sound issues.  I'm pretty frightened and angry that I'm dealing with this.  I'm generally very positive, despite the challenges life throws at us  -but this is driving my nuts!  Anyway, I have an appointment scheduled next thursday with an audio dr to begin the retraining.  Are there any tips on keeping your sanity??

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saab1216

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Posts: 152
Reply with quote  #10 
Positive thinker,Just remember that this is a treatable condition which has for me almost 85% cured. I am not aware of it at all sometimes except with certain sounds. I must curtail certain things but remain positive that I will beat this all together with Gods help to get me through. The TRT does really kickstart your ears to re acclimate. The rest of the "healing" is what you can do by slowly re introducing evryday sounds back into your life. No,I dont have all the answers but this is all that I experienced myself. It is slowly working. Last year ,I couldnt tolerate my voice,running water or driving my car. Now I drive 3 to 5 hours no problem,I can speak loudly and yell with no pain! It is liberating! I only have real issues with soft sounds now.(no biggie).
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PositiveThinker

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Reply with quote  #11 

Thank you so much Saab!  Your message gives me courage and hope.  I've become so obsessed with my situation that I feel like I constantly focus on it which is making it worse.  Plus i have a little baby who makes high pitches noises all time.  - ugh!  But thank again for responding.

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SkaMasta097

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Posts: 76
Reply with quote  #12 
Quote:
Originally Posted by saab1216
I also hear saliva sounds while people eat and speak. I have a hatred to as lot of voice characteristics such as consonant sounds (P,S,T)> They sound sharp or very pronounced. It sounds as if the consonants are deliberately over played in speech! It is very distressing at times but I am slowly accepting the changes to my hearing.


I am no expert, but aren't these symptoms common of Misophonia?

Quote:
I have a small degree of hearing loss at my very high and very low levels. i have a reduced threshold to certain sounds. when sounds are quickly heard,I am very distressed by the quick shift. A hand clap or shrill voice is the worst. 


Hearing loss + Quick shifts in sounds = Recruitment, no?

Quote:
Sometimes my ear rings loudly as the hearing diminishes for a few seconds.


Same here. It's like my ear presses the reset button, like on a computer. I lose my hearing in one ear (usually the left) for a few seconds, while it rings loudly for a few seconds and my hearing slowly returns. This is strange, as it happens in a quiet room with no previous noise exposure that day.

A few other weird things that my ear does is a flickering spasm which feels/sounds like a candle going out right by my ear and sometimes when I breathe, my ear "breathes" too. I might have some slight eustachian tube dysfunction, because it was there long before my H/T.

Quote:
I am learning to handle this huge list of discomfort every day and I suspect that you will too. The human brain is amazing when learning to live and deal with pain. i hope you will improve above and beyond my level!  Paul


I am proud of you man. I can't say I could take the same approach, but you are quite a trooper when it come to these ear problems.

You said your wife had ear problems. Shouldn't she understand, then?
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saab1216

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Posts: 152
Reply with quote  #13 
skamaster I wasn't diagnosed with recruitment per say because I can hear most everything at every level. My hearing loss is a common degree of loss for my age.Hyperacusis is very commonly known for such distress at sudden changes of sound.It is called diminished threshold to sound. I had it worst last year. At the mere sound of a clink of a glass or tap of a finger I felt distressed. It is greatly improving for me. Today was the first day that I went shopping and didn't notice my hyperacusis at all. Shopping carriages not a problem. Bells,beeps not a problem! I was so happy,I engaged with people in pleasant conversation. It has really changed my appreciation for life and encounters with people. I really had missed relaxing around public places and now find myself longing for them.
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Johnloudb

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Reply with quote  #14 

Quote:
Originally Posted by Paul
Today was the first day that I went shopping and didn't notice my hyperacusis at all. Shopping carriages not a problem. Bells,beeps not a problem! I was so happy,I engaged with people in pleasant conversation. It has really changed my appreciation for life and encounters with people. I really had missed relaxing around public places and now find myself longing for them.


Hi Paul,

I hope you'll remember these words you posted the next time you show up on the board complaining about permanent nerve damage.    I'm really glad things are improving for you! 

I understand how disconcerting and discouraging it can be when we have these temporary setbacks, but I find that if I keep at it, the general trend is forward progress. 

Best.

John

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saab1216

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Posts: 152
Reply with quote  #15 

John...Thanks for properly disciplining me on my tendencies to go astray in positive thinking. Nerve damage=nonsense! I will prove to all one day that I am 100% cured. Just to get rid of this high frequency problem and watch t.v. again!

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