Hearing Loss and CF

Beccamom

New member
I think my hearing has gotten worse recently. What are the causes of hearing loss with CF? I know certain antibiotics are ototoxic. What about Azythromycin 3 days weekly can that cause hearing loss? Can sinus infections cause hearing loss without ear pain or ear infection? Is it likely temperary or permanent?

I see ENT and audiology Friday that my pulmonologist is sending me to. Any specific questions, tests, etc for audiology I should know about?
 

Beccamom

New member
Does anyone know if absent middle ear muscle reflex is common for CF or from ototoxic medicine. My daughter has absent middle ear muscle reflex, but hears the beep test perfectly. I was wondering if anyone else has this?


I think my hearing has gotten worse recently. What are the causes of hearing loss with CF? I know certain antibiotics are ototoxic. What about Azythromycin 3 days weekly can that cause hearing loss? Can sinus infections cause hearing loss without ear pain or ear infection? Is it likely temperary or permanent?

I see ENT and audiology Friday that my pulmonologist is sending me to. Any specific questions, tests, etc for audiology I should know about?
 

Daverog75

New member
hello,

The only medication that I know off that can affect hearing is IV Tobramycin if someone is taking for 3 months or longer you can get ringing in the ears and then it's stop.

There may be others that can affect hearing I just don't which one's they are.

Dave 38 w/cf
 

zamanka

New member
I think my hearing has gotten worse recently. What are the causes of hearing loss with CF? I know certain antibiotics are ototoxic. What about Azythromycin 3 days weekly can that cause hearing loss? Can sinus infections cause hearing loss without ear pain or ear infection? Is it likely temperary or permanent?

I see ENT and audiology Friday that my pulmonologist is sending me to. Any specific questions, tests, etc for audiology I should know about?

Sounds exactly as my husband had.
He was taking Azythromicin 3 times a week for a long term and he had a hearing loss on his left ear. Doctors won't say it was because Azythromicin (he did tests at ENT and etc), but he stopped taking Azythromicin anyway and after that his hearing was back to normal. So it was temporary and caused by Azythromicin.
 

azdesertrat

New member
I have had tinitis as long as I can remember. I'm sure part of it is due to listening to heavy equipment too long, but most is due to meds.
I'm on Tobi bi-monthly & I've heard anti-rejection drugs can cause hearing issues. I don't think cystic fibrosis is the cause of hearing problems, treatment of CF causes hearing issues. Maybe I'm wrong, I have been before...
 

MichaelL

New member
My doctor has discussed with me that some antibiotics cause hearing issues that go away when you go off them while others cause permanent hearing loss. My recollection is that TOBI and Azythromicin fall in the temporary hearing loss category. Amakacin can cause permanent damage, which happened to me. This is certainly not a complete list, but the ones that I'm familiar with.
 

zamanka

New member
My doctor has discussed with me that some antibiotics cause hearing issues that go away when you go off them while others cause permanent hearing loss. My recollection is that TOBI and Azythromicin fall in the temporary hearing loss category. Amakacin can cause permanent damage, which happened to me. This is certainly not a complete list, but the ones that I'm familiar with.

That's good to be aware which medicine can cause permanent damage, as Amakacin... Sorry for you. Is it really bad?
 

Jessiesmom

New member
We just saw an Otologist last Friday for my 15 year old. She has low level hearing loss in both ears, however, the right is much worse. I expressed to him my concern that the cause was all the "myacin" medications she has been on all her life. His response was that they cause high level hearing loss, not low. He feels that her hearing issue is the pump between the inner and outer ear - imagine this - it transmits salt back and forth! He said one chamber should have more salt than the other normally but feels that her pump isn't working properly so the salt distribution is off. He put her on a very low sodium diet and gave her a diuretic. We are still going to get her hearing aids, but we go back to him in March to see if there is any improvement in the hearing.
 
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Deb

Guest
I have permanent hearing loss due to IV Tobramycin. Mine is so bad that they also no longer give me inhaled TOBI. I get mixed opinions on this. One doc says it was definitely from the TOBI another says it is not because it only affected one ear. I am getting another hearing test in march and will probably need a hearing aid. I also have ringing in that ear.
 

beautifulsoul

Super Moderator
I have severe hearing loss/complete deafness from Amikacin I.V. I was on it long term, as it was the only medication that was able to fight the Mico-bacteria at the time. I now have cochlear implants to help me hear. Amikacin is EXTREMELY ototoxic.
 

Beccamom

New member
Your ENT explanation is really interesting. Do you know if your child had absent or elevated middle ear muscle reflex. (MEMR) test.

We just saw an Otologist last Friday for my 15 year old. She has low level hearing loss in both ears, however, the right is much worse. I expressed to him my concern that the cause was all the "myacin" medications she has been on all her life. His response was that they cause high level hearing loss, not low. He feels that her hearing issue is the pump between the inner and outer ear - imagine this - it transmits salt back and forth! He said one chamber should have more salt than the other normally but feels that her pump isn't working properly so the salt distribution is off. He put her on a very low sodium diet and gave her a diuretic. We are still going to get her hearing aids, but we go back to him in March to see if there is any improvement in the hearing.
 

Beccamom

New member
Amber thanks for replying. Did you have a sudden hearing loss or was the change gradual?

I have severe hearing loss/complete deafness from Amikacin I.V. I was on it long term, as it was the only medication that was able to fight the Mico-bacteria at the time. I now have cochlear implants to help me hear. Amikacin is EXTREMELY ototoxic.
 

beautifulsoul

Super Moderator
Amber thanks for replying. Did you have a sudden hearing loss or was the change gradual?

The sudden loss was all mild hearing loss. Then, I gradually lost hearing within one year or less (can't remember exactly. It was too long ago) ultimately resulting in deafness.
 

Simba15

Member
I am wondering if CF causes the hearing loss, itself. my hear loss is "advance for someone of my age" per the audiologist. I have never takentobi or the otherthings most CFers have taken b/c my form of CF is "mild." I was recently thinking maybe the CF itself causes the hearing loss.
 

beautifulsoul

Super Moderator
I am wondering if CF causes the hearing loss, itself. my hear loss is "advance for someone of my age" per the audiologist. I have never takentobi or the otherthings most CFers have taken b/c my form of CF is "mild." I was recently thinking maybe the CF itself causes the hearing loss.

Hearing loss isn't related to CF alone. At least no doctor has ever mentioned that to me. I know enough individuals with CF that have no problems with hearing.
 

CyrilCrodius

New member
For anyone reading this, if you get hearing loss, even if it's partial, go see an ENT RIGHT AWAY. This couldn't be stressed enough. If it's hearing loss that is going to be permanent, things can be done to lessen it if it's done in time.

Anecdotal report : Last time I got IV Benadryl (shot in high concentration from a syringe) I got sudden partial bilateral hearing loss when it hit. It took a few days to go back to normal. Of course, I wasn't given Benadryl again.
 
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leona.mccauley

Guest
I don’t think its permanent hearing loss. To be sure get your testing done with an audiologist whenever you feel ringing in ears.
 

AnnieT

New member
I got biopsied for Primary Cilia Dyskensia this morning (twice) it's painful, but anyway that I know can cause hearing loss. I failed my hearing test 2 months ago. I'm not sure of certain medications affecting hearing although with all the side effects it is possible, I assume :(
 

AnnieT

New member
For anyone reading this, if you get hearing loss, even if it's partial, go see an ENT RIGHT AWAY. This couldn't be stressed enough. If it's hearing loss that is going to be permanent, things can be done to lessen it if it's done in time.

Anecdotal report : Last time I got IV Benadryl (shot in high concentration from a syringe) I got sudden partial bilateral hearing loss when it hit. It took a few days to go back to normal. Of course, I wasn't given Benadryl again.

That's interesting with the benadryl and hearing loss.
 
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