Help! Ringing in ear/hearing loss

[Irishgal]

On Sunday afternoon, out of the blue I was brushing my teeth & noticed that my left ear felt clogged & my hearing was muffled on that ear. Within 5 minutes I got a loud, very loud ringing in that ear. I saw an ENT yesterday who did a hearing test & diagnosed me with sensorineuro hearing loss. The ringing & pressure has not gone away at all since Sunday. The odd thing is that they do not know what is causing this. I haven't been on IV antibiocs since January. Was on amikacin & colistin IV then.
When this happened on Sunday I was just finishing my 28th day of inhaled colistin.
My ? Is, Has this happened to anyone else?
could inhaled colistin cause this? My doc says no.
To those who have hearing loss, does the horrendous ringing & plugged feeling ever go away?
Has anyone had this happen & it resolved itself? If not, what can I expect to be dealing with?
I now have been getting awful headaches on top of it all & feel worn out. I cannot imagine living everyday with this in my ear & I pray my right ear remains normal.
Any insight or experiences will be much appreciated.
I'm also waiting to get an MRI of my ear done.

 

[beautifulsoul]

Hi there,

This is my personal experience from hearing loss...

I experienced full hearing loss from Amikacin I.V. I'm estimating that I started noticing changes in my hearing around 3 months after starting the IV. when I went for a hearing test, I was already in the moderate hearing range. The audiologist explained that it was permanant loss. I would NOT be able to gain it back. My CF doc took me off the medicine right away. I was able to wear hearing aids for about a year and a half. I hated them at first, everything was too loud and it just didn't sound the same anymore but I became used to them after forcing myself to keep them on everyday.

Unfortunately, after a year of no Amikacin, my health continued to decline and there were no other medication options for me. I didn't have much of a choice. I had to take the Amikacin to prevent further sickness and even possible death which meant I was also going to slowly lose hearing over time (which meant eventually becomming deaf) In the end it's pretty much this...Would you rather be deaf than risk sickness/death?

Obviously I took huge risks. As you can see, I had to be transplanted anyway. I'm glad I took Amikacin. It saved my life for the the last two years before my transplant. Even though I had to risk more than I ever imagined, I'm blessed to be here today. I now have something called Cochlear Implants. They work extremely well for me! In the end it was all worth it.

Hugs to you...

♥

 

[mysticrose]

I don't have CF but I had something simlar happen a yr ago. It ended up being a cholesteatoma which is basically a growth in the ear. It does require surgery to fix though. I always have ringing in my ears so that wasn't new to me just got a bit more intense. Usually if it is caught early they can remove the growth and you will get normal hearing again. Mine was bigger than they had first thought so now I have hearing loss and some vertigo issues. I think the MRI should be able to tell them if there is something there or not, mine was so big they didn't need to do any extra tests and could see if with the basic stuff they had in the office. GOOD LUCK I hope they can figure out what is causing it.

Jen. mom to 4. 3 w/cf and one lucky red head.

 

[Irishgal]

Thank you both for your replies.
Amber, did your hearing loss start with ringing in the ears or did you just notice it was hard to hear?
I'm do sorry you had/have to deal with this. But, you are right. We need to do what is best for our health & learn to deal with the other issues as they come.
Jen-How do you deal with your vertigo? Did the ringing in your ears decrease at all or do you still have it?

 

[beautifulsoul]

I did have some ringing. The sounds I began to hear around me I would describe as being "muffled" Not fully audible.

It was an unfortunate experience but I believe I became the person I am today because of it and everything else I've been through...

 

[stephen]

Irishgal

Amikacin, like Tobramycin, is an "aminoglycoside". This class of drugs is known to cause hearing loss. A web search shows that a delay of five months has been observed between the end of treatment and the onset of hearing loss.

A number of years ago I suffered some ear ringing and then hearing damage from Tobramycin IV. My doctor stopped the Tobramycin IMMEDIATELY, and substituted another drug. I think it was Cefepime - which I happen to be on at the present time.

Subsequent to that experience with Tobramycin, I began to hear ringing when using TOBI. My audiologist said the inhaled form of Tobramycin, TOBI, is not supposed to enter the blood stream and effect hearing. After some research on the web, I requested that some tests be performed to check for Tobramycin in my blood. It was. For close to five years now I have not used TOBI. Thank G-d Cayston "appeared" and has taken its place.

To all - You should be proactive in your care. Using the internet to acquire information is one way. Another is getting second, third, fourth, ... medical opinions. Don't always take what you doctor says as the only answer. No doctor knows everything. Often there is no one right answer and your treatment is more of an art than a science. We all know there are differences among even the greatest artists.

PS: Most of the ringing has left. Some of the high frequency hearing loss was still present the last time my hearing was tested. I have become accustom to it.

Wishing you and everyone the best.

Stephen,
70 y/o with CF (D1152H, G542X0) and Bronchiectasis

 

[beautifulsoul]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>stephen</b></i>To all - You should be proactive in your care. Using the internet to acquire information is one way. Another is getting second, third, fourth, ... medical opinions. Don't always take what you doctor says as the only answer. No doctor knows everything. Often there is no one right answer and your treatment is more of an art than a science. We all know there are differences among even the greatest artists. PS: Most of the ringing has left. Some of the high frequency hearing loss was still present the last time my hearing was tested. I have become accustom to it. Wishing you and everyone the best. </end quote>
My parents did everything you mentioned above. Skipped the first step about researching info online. My mother is an RN and she already knew something wasn't right as soon as I said my ears were ringing and my hearing sounded muffled. We went to second opinions. There was no other antibiotics available at that time to treat the bacteria I had in my lungs. It all comes down to which risk you want to take.