Hearing Loss

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JennifersHope

New member
As you know I have been asking about hearing loss. Last week after six months of being on Amikacian.. among other medications I became profoundly dizzy, ringing in my ears, felt sea sick and like there was water in my ears.

Today I had my hearing checked and I have moderate hearing loss. but only at certain decibels. 2000 decibels to be exact.. I can hear okay not normal only mild hearing loss at decibels below and above 2000 but 2000 I have moderate hearing loss.

I have no idea.. I go back tomorrow to see what we are going to do about the antibiotics.

Anyone experience hearing loss from antibiotics, what was your expereince and when did you know when to stop treatment?? I am only six months into what is supposed to be an at least one year treatment for NTM...

also for those who lost their balance like I have, did you regain any of it back?
 
W

windex125

Guest
I have hearing loss as well using gentamicin for a few years, back in the early 90's I did not realize I was losing my hearing till I started answering back questions that made no sense? I have abt 30-35% loss in both ears I am not sure the decibel number but it is high piched sounds more or less. I was fitted for hearing aids abt 7 years ago I forget. I did not even know this was a side effect till after the fact. I do not wear the hearing aids everyday as if I am one on one or out alone I do not use them, they pick up alot of backround noise and then its even worse. I still get the ringing in the ears occassionally. I think all of the drugs in this fmaily have the same side effects. But it kills the bacteria, it's a hard decision? Maybe you have more options then I did. Good luck Pat-57/CF
 
J

JustDucky

New member
My hearing was tested and found to be okay when I had the dizziness/balance problems while on Gent last year. I did have terrible issues with balance and could not move quickly or I would fall. Simply walking my dog was a nightmare, I felt like the side walk was moving, like I was on a ship on rough seas. Thankfully, this did get better....I hope it does for you as well. There are exercises that can be done to help with this.. It took months before I felt like I could walk in a straight line again, even now, I must be careful about sudden movements, especially with my head.

I hope everything works out for you in the end.....
Jenn 40 w/CF
 
beautifulsoul

beautifulsoul

Super Moderator
Jennifer-

This SAME exact issue happened to me. From Amikacin I.V. I'm estimating that I started noticing changes in my hearing around six months as well AND like you mentioned, 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? I hope you won't have to go through the same thing as I did.

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.

Feel free to PM me with questions or further information.

hugs to you
 
F

franzie2984

Member
Hi,
I lost my hearing unrelated to antibiotics but likely related to CF. I had meningitis and lost all my hearing before I was even admitted to hospital. I did also lose all my balance but it gradually came back over the years and now I have fairly good balance. I can stand on one foot etc, and walk normally. So if your balance if impacted, there are things u can do to correct and improve it, no problem.
Being deaf isnt really bad, just takes some adjustment. If you have to continue the medicine etc, feel free to contact me if you want some support for anyting!

Sarah~
 
J

JennifersHope

New member
Thank you for the replies, They took me off the Amikacian.... I was so torn. so so so torn... I really didn't want to lose hearing, my worst symptom was the balance and that is still way off.

They thought I might be able to do inhaled Tobi...or Amikacian but then decided against it because my airways are so spastic, they swell up and I end having to be vented.. ( way too much lately0

They put me on Cefoxitin..which is Ceftaz.. I have been on that before.... a lot... for years...


I am not on IV Zyvox, IV Cipro, IV Ceftaz.. Oral Bactrim and Oral Zithromax.... The very good thing is when they did a broch on me they sent my specimen to National Jewish hospital where they are doing synergestic testing. I am hoping they come up with a game plan for me...

I can't begin to imagine what they will do, as far as my lungs go... there is room to play sort of because the actual lung damage in my lungs in only minimal....so I think protecting my hearing at this point is more important.. They symptoms before starting treatment were horrible, night sweats, I thought I had Mono or Chronic Fatigue I had no quality of life what so ever... so it is kind of hard to know what to do......

I am seeing the ear specialist Monday..


Thank you all for your kind words and support, I appreciate it so much.
 
J

JennifersHope

New member
Thank you for the replies, They took me off the Amikacian.... I was so torn. so so so torn... I really didn't want to lose hearing, my worst symptom was the balance and that is still way off.

They thought I might be able to do inhaled Tobi...or Amikacian but then decided against it because my airways are so spastic, they swell up and I end having to be vented.. ( way too much lately0

They put me on Cefoxitin..which is Ceftaz.. I have been on that before.... a lot... for years...


I am not on IV Zyvox, IV Cipro, IV Ceftaz.. Oral Bactrim and Oral Zithromax.... The very good thing is when they did a broch on me they sent my specimen to National Jewish hospital where they are doing synergestic testing. I am hoping they come up with a game plan for me...

I can't begin to imagine what they will do, as far as my lungs go... there is room to play sort of because the actual lung damage in my lungs in only minimal....so I think protecting my hearing at this point is more important.. They symptoms before starting treatment were horrible, night sweats, I thought I had Mono or Chronic Fatigue I had no quality of life what so ever... so it is kind of hard to know what to do......

I am seeing the ear specialist Monday..


Thank you all for your kind words and support, I appreciate it so much.
 
S

stephen

Guest
As many of you already know, Tobramycin and other Aminoglycosides like Amikacin can cause cochlear damage in some people.

A few rounds of IV Tobramycin damaged my hearing several years ago. I also found that inhaled TOBI was also causing ringing in my ears and was affecting my hearing.

Thank G-d for Cayston which has been working wonders for the past four years. Besides Aminoglycosides (TOBI and Amikacin), Colistin, and the new Cipro, I'm not sure if there are other inhaled antibiotics for combating Pseudomonas.

It's a rough decision to have to decide to use a drug that is damaging your hearing to be able to breath. I was very fortunate to "catch" my hearing loss before it became too severe, and to have an alternative that has worked for me. That's why it's so important to support drug research.

Wishing the best to all,
Stephen
70 years old; FEV1 48%, otherwise feel great, thank G-d.
 
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Tisha

New member
I had some hearing loss due to Tobramycin (high IV levels back in 1994) and when I take Tobi I go back to experiencing buzzing in the ears.
 
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scarecrow

New member
Boy o boy. I don't know exactly how to say what I'm thinking. Maybe because I'm not sure what that really is. I am 56 w/ CF myself but have not had to go through so much of the things that many of you do. It is such a shame that the only answers that anyone can come up w/ are doing so much damage to us above and beyond the disease that we will never be able to get away from. It seems like there should be some better answers. Maybe we are asking the wrong questions to begin w/. I don't know what the right ones are but I don't think that DRUG COMPANIES are necessarily looking out for our best interests. I sure wish you all the best of luck in your lives, just don't be afraid to say no if something doesn't seem right. Best of luck to you all and never give up in this struggle that we are all part of,Dale.
 
M

MichaelL

New member
I'm going through a very similar situation for my treatment of mycobacterium abscessus. I stopped Amikacin last summer due to hearing damage in the upper register. They then put me on Tygacil, which caused other horrible side effects, so I'm back on Amikacin at a lower dose.

They have talked to me about the possibility of inhaled Amikacin. The side effects are supposed to much less, although it's generally not as effective. I hope your new regimen with work well for you and you don't have to worry about Amikacin again.
 
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JennifersHope

New member
What I pain in the neck this is... My hearing feels like it may have gotten worse even though I stopped the medicine seven days or more ago..... I asked about a lower dose of Amikacian but they said it would not be effective and that it would just cause resistance.

I have some amazing appointments coming up with NTM experts and I am hoping for some answers.. Since I am not allergic to but can not tolerate many of the medications by mouth, I am forced to do IVs and I am doing seven a day for six months and it is getting old, it is past old..

I go back to the ear doctor tomorrow.. I hope he knows what he is doing and I hope that I didn't lose more hearing....

Thanks for your input
 
J

JustDucky

New member
Jenn, I'm just wondering.....with all of those antibiotics, are you full of yeast yet? I swear it only takes a week of IV's and I am a head to toe fungus....seriously, everywhere. That alone makes me more miserable than the lovely side effects of the IV's going into me, antifungals are prescribed right along with IV's to help this. I also take massive amounts of probiotics.....Being that you are on 5 strong antibiotics, 3 IV....and for 6 straight months,you must be miserable! Hope all goes well with the natl jewish consult and that you get a definite plan of action.

Jenn 40 w//cf
 
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