Sensitivity to Sound with TOBI?

J

JRB52

New member
Hi...

I notice that quite a few people have mentioned having the ringing in the ears after taking the TOBI and I was wondering if anyone has experienced a hyper-sensitivity to sounds.
I started TOBI a few weeks ago, but stopped after two weeks because it was causing too much tightness in my chest and making it more difficult to breathe. I've been off of it for four days, but have been experiencing this sensitivity to particular noises such as clanking dishes or people's voices on the phone--sounds a little louder than normal and a bit irritating. I was on the TOBI for such a short period of time so I'm not sure if this is the cause--hoping it will just go away. If you've had a similar sensation, please let me know.

Thanks so much!
 
J

JRB52

New member
Hi...

I notice that quite a few people have mentioned having the ringing in the ears after taking the TOBI and I was wondering if anyone has experienced a hyper-sensitivity to sounds.
I started TOBI a few weeks ago, but stopped after two weeks because it was causing too much tightness in my chest and making it more difficult to breathe. I've been off of it for four days, but have been experiencing this sensitivity to particular noises such as clanking dishes or people's voices on the phone--sounds a little louder than normal and a bit irritating. I was on the TOBI for such a short period of time so I'm not sure if this is the cause--hoping it will just go away. If you've had a similar sensation, please let me know.

Thanks so much!
 
J

JRB52

New member
Hi...
<br />
<br />I notice that quite a few people have mentioned having the ringing in the ears after taking the TOBI and I was wondering if anyone has experienced a hyper-sensitivity to sounds.
<br />I started TOBI a few weeks ago, but stopped after two weeks because it was causing too much tightness in my chest and making it more difficult to breathe. I've been off of it for four days, but have been experiencing this sensitivity to particular noises such as clanking dishes or people's voices on the phone--sounds a little louder than normal and a bit irritating. I was on the TOBI for such a short period of time so I'm not sure if this is the cause--hoping it will just go away. If you've had a similar sensation, please let me know.
<br />
<br />Thanks so much!
 
B

bharison

Member
I have had this same problem "ringing in the ears" and sensitivity to noises like-clanging dishes, leaf blowers etc.

I had IV Tobramycin for 14 days and then put on Tobi and had to stop for worry about hearing. I am over 60 so in the high risk group.

BMH Ventura
 
B

bharison

Member
I have had this same problem "ringing in the ears" and sensitivity to noises like-clanging dishes, leaf blowers etc.

I had IV Tobramycin for 14 days and then put on Tobi and had to stop for worry about hearing. I am over 60 so in the high risk group.

BMH Ventura
 
B

bharison

Member
I have had this same problem "ringing in the ears" and sensitivity to noises like-clanging dishes, leaf blowers etc.
<br />
<br />I had IV Tobramycin for 14 days and then put on Tobi and had to stop for worry about hearing. I am over 60 so in the high risk group.
<br />
<br />BMH Ventura
 
H

hockeykid

New member
I am also having a similiar issue with TOBI. I notice my hearing is not as sharp. I did not have any issues with IV Tobramycin when I was on it.
 
H

hockeykid

New member
I am also having a similiar issue with TOBI. I notice my hearing is not as sharp. I did not have any issues with IV Tobramycin when I was on it.
 
H

hockeykid

New member
I am also having a similiar issue with TOBI. I notice my hearing is not as sharp. I did not have any issues with IV Tobramycin when I was on it.
 
T

tesorotiffa

New member
I have been on Tobi in one form or another for at least 15 years on and off. I haven't noticed a sensitivity to sounds, but I can say I've noticed a light ringing in the ears. Personally I've felt as though my hearing has become a little less sharp also, but I had a hearing test done about 2 months ago for my new job, and it came back perfect. I definitely wasn't expecting that! I do however have a friend who has a hearing aid due to Tobi.
 
T

tesorotiffa

New member
I have been on Tobi in one form or another for at least 15 years on and off. I haven't noticed a sensitivity to sounds, but I can say I've noticed a light ringing in the ears. Personally I've felt as though my hearing has become a little less sharp also, but I had a hearing test done about 2 months ago for my new job, and it came back perfect. I definitely wasn't expecting that! I do however have a friend who has a hearing aid due to Tobi.
 
T

tesorotiffa

New member
I have been on Tobi in one form or another for at least 15 years on and off. I haven't noticed a sensitivity to sounds, but I can say I've noticed a light ringing in the ears. Personally I've felt as though my hearing has become a little less sharp also, but I had a hearing test done about 2 months ago for my new job, and it came back perfect. I definitely wasn't expecting that! I do however have a friend who has a hearing aid due to Tobi.
 
J

JRB52

New member
Thank you for your replies. As you know, it is so difficult and scary trying all these new medications because there are so many side effects and it's hard to tell what is causing what. I'm not starting multiple meds at the same time for this reason, but it's still hard. I stopped the TOBI because of the chest tightness and further decline in breath, but now that I've been off for four days and the chest pain has lessened, it seems that it had already cleared some of the thick mucus--and I have a lot of that--so it was doing something positive. But, is it worth weeks of chest discomfort and compromised breathing every other month? And if it is indeed effecting my hearing, I can't imagine continuing. I'm hoping that will normalize in a few days since I was on the TOBI for such a short time. It's so interesting that your friend has a hearing aid due to the TOBI, Tiffa, since the TOBI drug information only mentions a 3% ringing in the ears during the test trials--all of which subsided after people stopped the medication. And the pharmacists have told me that the hearing problems are most likely to happen with IV tobramycin and not the inhaled. Does anyone take the azithromycin?
 
J

JRB52

New member
Thank you for your replies. As you know, it is so difficult and scary trying all these new medications because there are so many side effects and it's hard to tell what is causing what. I'm not starting multiple meds at the same time for this reason, but it's still hard. I stopped the TOBI because of the chest tightness and further decline in breath, but now that I've been off for four days and the chest pain has lessened, it seems that it had already cleared some of the thick mucus--and I have a lot of that--so it was doing something positive. But, is it worth weeks of chest discomfort and compromised breathing every other month? And if it is indeed effecting my hearing, I can't imagine continuing. I'm hoping that will normalize in a few days since I was on the TOBI for such a short time. It's so interesting that your friend has a hearing aid due to the TOBI, Tiffa, since the TOBI drug information only mentions a 3% ringing in the ears during the test trials--all of which subsided after people stopped the medication. And the pharmacists have told me that the hearing problems are most likely to happen with IV tobramycin and not the inhaled. Does anyone take the azithromycin?
 
J

JRB52

New member
Thank you for your replies. As you know, it is so difficult and scary trying all these new medications because there are so many side effects and it's hard to tell what is causing what. I'm not starting multiple meds at the same time for this reason, but it's still hard. I stopped the TOBI because of the chest tightness and further decline in breath, but now that I've been off for four days and the chest pain has lessened, it seems that it had already cleared some of the thick mucus--and I have a lot of that--so it was doing something positive. But, is it worth weeks of chest discomfort and compromised breathing every other month? And if it is indeed effecting my hearing, I can't imagine continuing. I'm hoping that will normalize in a few days since I was on the TOBI for such a short time. It's so interesting that your friend has a hearing aid due to the TOBI, Tiffa, since the TOBI drug information only mentions a 3% ringing in the ears during the test trials--all of which subsided after people stopped the medication. And the pharmacists have told me that the hearing problems are most likely to happen with IV tobramycin and not the inhaled. Does anyone take the azithromycin?
 
K

KingJames

Member
I only use TOBI when I feel I really need it, and that's only been once in the past five years. I caught some weird bug that was going around the Fall of 2009, and it left me with pneumonia (Self-diagnosed). It gave a lot of folks pneumonia, and something similar is doing the same thing with a lot of people this year too (I think it might be a milder, secondary version of the Flu. The doctors didn't know what it was either, but they were trying to figure it out the last I heard). I took ten doses of TOBI, and it KO'd whatever it was. It almost came back, milder, though, and another five doses finished off the issue for good! FYI- My TOBI had been expired years before I used it, but it was still good (Just keep it refrigerated).

Now, as far as ringing, I might get something like that for a few seconds every once in a while, but nothing abnormal. Whenever I've had annoying, lasting ringing in the ear, it's just been due to an inner ear infection, and it's cleared up with antibiotics. On a similar note, I've always had sensitive hearing, but I'm glad I do, because I don't miss a thing ;-)

Regarding the TOBI causing your chest to get tight, that's not right. TOBI is just an antibiotic (A VERY strong one that most people can only get while admitted to the hospital), and it sounds like you might be having a negative reaction to it. DNase is the aerosol medication that really loosen the mucus, since it thins it out, and of course the Albuterol/Cromolyn combo dilates your bronchial passages to allow for easier expectoration of whatever junk you might have in your lungs.

Just to let you know, the only things that ever made my chest tight were Singular (Tablet pills), and of course whenever I took too many decongestants. The Singular prescription was dumb, and it was under the assumption of a new doctor that CF patients all have Asthma (Which is utter rubbish, at least in my case). Since TOBI is simply meant to kill off bacteria, I'm not sure why it's making your chest tight. Please go over this with your doctor, and if they don't satisfy you in terms of an answer, don't hesitate to get a second qualified opinion!

Btw, I am currently on Zithromax (Daily, all year round), AKA Azithromycin, and I've been on it for about fifteen years. It was given to me as a substitute for Ceftin. It's considered a better drug, because due to it's composed structure, Pseudomonas stands less of a chance of gaining a resistance to it.
 
K

KingJames

Member
I only use TOBI when I feel I really need it, and that's only been once in the past five years. I caught some weird bug that was going around the Fall of 2009, and it left me with pneumonia (Self-diagnosed). It gave a lot of folks pneumonia, and something similar is doing the same thing with a lot of people this year too (I think it might be a milder, secondary version of the Flu. The doctors didn't know what it was either, but they were trying to figure it out the last I heard). I took ten doses of TOBI, and it KO'd whatever it was. It almost came back, milder, though, and another five doses finished off the issue for good! FYI- My TOBI had been expired years before I used it, but it was still good (Just keep it refrigerated).

Now, as far as ringing, I might get something like that for a few seconds every once in a while, but nothing abnormal. Whenever I've had annoying, lasting ringing in the ear, it's just been due to an inner ear infection, and it's cleared up with antibiotics. On a similar note, I've always had sensitive hearing, but I'm glad I do, because I don't miss a thing ;-)

Regarding the TOBI causing your chest to get tight, that's not right. TOBI is just an antibiotic (A VERY strong one that most people can only get while admitted to the hospital), and it sounds like you might be having a negative reaction to it. DNase is the aerosol medication that really loosen the mucus, since it thins it out, and of course the Albuterol/Cromolyn combo dilates your bronchial passages to allow for easier expectoration of whatever junk you might have in your lungs.

Just to let you know, the only things that ever made my chest tight were Singular (Tablet pills), and of course whenever I took too many decongestants. The Singular prescription was dumb, and it was under the assumption of a new doctor that CF patients all have Asthma (Which is utter rubbish, at least in my case). Since TOBI is simply meant to kill off bacteria, I'm not sure why it's making your chest tight. Please go over this with your doctor, and if they don't satisfy you in terms of an answer, don't hesitate to get a second qualified opinion!

Btw, I am currently on Zithromax (Daily, all year round), AKA Azithromycin, and I've been on it for about fifteen years. It was given to me as a substitute for Ceftin. It's considered a better drug, because due to it's composed structure, Pseudomonas stands less of a chance of gaining a resistance to it.
 
K

KingJames

Member
I only use TOBI when I feel I really need it, and that's only been once in the past five years. I caught some weird bug that was going around the Fall of 2009, and it left me with pneumonia (Self-diagnosed). It gave a lot of folks pneumonia, and something similar is doing the same thing with a lot of people this year too (I think it might be a milder, secondary version of the Flu. The doctors didn't know what it was either, but they were trying to figure it out the last I heard). I took ten doses of TOBI, and it KO'd whatever it was. It almost came back, milder, though, and another five doses finished off the issue for good! FYI- My TOBI had been expired years before I used it, but it was still good (Just keep it refrigerated).
<br />
<br />Now, as far as ringing, I might get something like that for a few seconds every once in a while, but nothing abnormal. Whenever I've had annoying, lasting ringing in the ear, it's just been due to an inner ear infection, and it's cleared up with antibiotics. On a similar note, I've always had sensitive hearing, but I'm glad I do, because I don't miss a thing ;-)
<br />
<br />Regarding the TOBI causing your chest to get tight, that's not right. TOBI is just an antibiotic (A VERY strong one that most people can only get while admitted to the hospital), and it sounds like you might be having a negative reaction to it. DNase is the aerosol medication that really loosen the mucus, since it thins it out, and of course the Albuterol/Cromolyn combo dilates your bronchial passages to allow for easier expectoration of whatever junk you might have in your lungs.
<br />
<br />Just to let you know, the only things that ever made my chest tight were Singular (Tablet pills), and of course whenever I took too many decongestants. The Singular prescription was dumb, and it was under the assumption of a new doctor that CF patients all have Asthma (Which is utter rubbish, at least in my case). Since TOBI is simply meant to kill off bacteria, I'm not sure why it's making your chest tight. Please go over this with your doctor, and if they don't satisfy you in terms of an answer, don't hesitate to get a second qualified opinion!
<br />
<br />Btw, I am currently on Zithromax (Daily, all year round), AKA Azithromycin, and I've been on it for about fifteen years. It was given to me as a substitute for Ceftin. It's considered a better drug, because due to it's composed structure, Pseudomonas stands less of a chance of gaining a resistance to it.
 
J

JRB52

New member
Well. I've been off of my two week trial of TOBI for eight days now and the sensitivity to sound seems to be getting worse. Making me a little stressed. I suppose I should go to the ENT, but I read that if it is indeed the TOBI that is causing this, there is nothing they can do. I'm not having very good luck with these meds and I'm afraid to try any other ones.
 
J

JRB52

New member
Well. I've been off of my two week trial of TOBI for eight days now and the sensitivity to sound seems to be getting worse. Making me a little stressed. I suppose I should go to the ENT, but I read that if it is indeed the TOBI that is causing this, there is nothing they can do. I'm not having very good luck with these meds and I'm afraid to try any other ones.
 
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