anyone else with hyperacusis?

[mattsmum]

hi - i have had worsening hyperacusis in my an ear for 18/12 (before i had radiosurgery 7 months ago). it has got a lot worse since i started having tumour swelling and a variety of associated problems 3 or 4 months ago, to the point i can no longer sing - which i love to do!
i saw a hearing therapist today who diagnosed bilateral hyperacusis, worse in my an ear and started me with bilateral white noise generators. the poor lady was a little taken aback when i asked if having a treated an made any difference to the success of hearing retraining, as my ent had not put that in the referral letter!
she says  i cannot have a hearing aid until i have less sensitive ears.
has anyone else had this problem/treartment - and does it work?

vikki

[CHD63]

Hi Vikki .....

I did not have radiosurgery, but I developed hyperacusis after the surgical removal of my AN three years ago.  I, also, am a singer and this has been most frustrating for me.

Two things:  1) My audiologist fit me with a musicians' earplug (see http://www.etymotic.com/ephp/erme.aspx) that I carry with me at all times to use in my good ear in noisy environments (movies, restaurants, concerts, etc.) 2) it does get better over time ..... or my brain has made some compensations so that I can now sing, albeit not like before.

I have about 20% hearing in my AN ear, 100% in my good ear.  I wear a Widex digital hearing aid in my AN ear, which is a big improvement but, of course, not normal hearing as before.  I no longer feel comfortable singing solos and I find that when singing in choral groups I have to position myself very carefully so a very loud singer is not on my "good" side.

I have not tried the white noise generators, but using the hearing aid definitely helps equalize incoming sounds.

Hope that helps.  Clarice

[mattsmum]

hi clarice - thank you for the reply. i will ask about the musicians ear plug next visit as my ent surgeon had also mentioned something that sounded like that, and meanwhile await any improvement from the white noise generators.

vikki

[Mickey]

Having tinnitus for over thiry years and a sensitivity to loud sounds it has always been a normal part of my routine to put cotton in my ears. I do this at the moment I feel the sound may affect me. I still can hear whats going on, of course its a little harder. This has helped me over the years and prevents me going thru the aftermath of by head buzzing out of control for a while. Best wishes, Mickey

[Warm_in_MN]

Hi Vikki,

I too have hyperacusis.  I'm 18 months out of Cyberknife surgery.  It seems to worsen for me when my hearing is stressed from loud noises or I am tired as well.  I'll be watching TV or in a normal setting and if a high pitched frequency noise comes up or even at times just louder noise, I'll get a shocking sensation in my ear and up through my brain.  Not very pleasant.  It almost seems that there is a conditioning going on too.  After a days work or doing physical activity really seems to bring it on.  Some nights when I'm watching TV with my daughter and shes eating a bowl of ice cream, the sound of the spoon hitting the bowl startles and hurts my ear.  I've asked those around me to be sensitive to the noise they're making when I'm in this condition.  I'm looking into getting a well fitted ear plug use when I find myself in this situation and to ready myself to tolerate louder situations.  I also take a regiment of Ibuprofen to help.

I'm hoping as time goes by that this will get better as I progress through recovery.

Bob

[mattsmum]

hi bob - sorry to hear of your difficulties.
i have good news though - the white noise generators really do work! i will admit i was rather sceptical when i was given them, my ENT had refered me to hearing therapy for an ear plug, but the therapist recommended desensitisation treatment so i gave it a go. and what do you know - after 3 months i am back singing in choir which i had had to stop 6 months ago, and can go into a restuarant again! it may be worth you checking them out. they look like open fit hearing aids but emit a 'white noise' instead of amplify.
best wishes,

vikki

[nftwoed]

Hi Vikki
  I believe the sound sensitivity if you have  a hearing loss is known as 'recruitment'. and 'hyperacussis' if there is no loss.

[mattsmum]

i have heard it described as recruitment in hearing loss too. however the hearing therapist called it hyperacusis in both ears - i only have a hearing loss on the AN side but increased sound sensitivity on both sides .
it would be perhaps correct but rather overcomplicated to say i have left sided recruitment and right sided hyperacusis!!

best wishes,

vikki