[Strawberry]

I've been hearing impaired since the age of 18 and I'm now 65. Recently my doctor, who is an advanced practice nurse, put me on Lasix for edema that I have in my legs and feet - which she thinks is caused by another blood pressure drug called Norvasc. After being on Lasix for about a week or less, I noticed that my hearing was being affected.

So I called her office and the decision was made to stop Lasix and try Bumex, which I guess is in the same class of water pills. Now after being on Bumex for almost two weeks I am again experiencing the same ototoxicity. My head feels like it is in a barrel - all hollow - can't hear worth a darn. I am 100% deaf in my left ear and hearing impaired in my right ear. So any hearing I have left I want to protect at any cost.

This past Wednesday, when I first noticed my hearing was being affected, I called the APN and explained my situation. She told me that since I was on a small dose twice a day she did not think it was the Bumex that was affecting my hearing and I should not stop the drug. I believed her....what a fool I am!!!

Today I woke up and I cannot hear hardly anything even with my hearing aid. I am feeling absolutely crushed.....just needed to rant on about my ear. Sorry if I've offended anyone.

 

[Shanny]

Lord no, you haven't offended anyone! I'm hearing impaired myself. Maybe we can get a little more discussion going about this & see if there's a better solution to the edema problem, than sacrificing what's left of your hearing! Do you think there's any benefit in seeing an ENT? This definitely fits my criteria as a "get-a-second-opinion" situation - a medical specialist. Can you get a referral?

 

[Strawberry]

Shanny,
Thanks for your kind words. They almost make me want to cry...in a good way. Your idea of getting a 2nd opinion is good. I have an appointment with a ENT doctor at the UW hospital in Madison, WI. I have to drive 2 hours one way to get there and 2 more hours to return home.

That said, I did contact his office also on Wednesday and the advance practice nurse there was adamant for me not to stop the diuretic medicine that my doctor here had started me on. However in light of what is currently happening as far as my hearing goes, I have decided to stop the diuretic. I will see the ENT doctor on this coming Wednesday. He likely will not want to make a decision about stopping a blood pressure medicine. But when I tell him that my hearing is affected, he may be able to reach my local doctor where I cannot. It seems that one professional can contact another professional lots quicker than patients can...right?

Someone told me that dandelion root tea is a natural diuretic. Don't know if that is true. Shanny.....I'm very grateful to have friends on this forum.

 

[Chesney]

Parsley is also a diuretic

 

[deafmack]

I've been hearing impaired since the age of 18 and I'm now 65. Recently my doctor, who is an advanced practice nurse, put me on Lasix for edema that I have in my legs and feet - which she thinks is caused by another blood pressure drug called Norvasc. After being on Lasix for about a week or less, I noticed that my hearing was being affected.

So I called her office and the decision was made to stop Lasix and try Bumex, which I guess is in the same class of water pills. Now after being on Bumex for almost two weeks I am again experiencing the same ototoxicity. My head feels like it is in a barrel - all hollow - can't hear worth a darn. I am 100% deaf in my left ear and hearing impaired in my right ear. So any hearing I have left I want to protect at any cost.

This past Wednesday, when I first noticed my hearing was being affected, I called the APN and explained my situation. She told me that since I was on a small dose twice a day she did not think it was the Bumex that was affecting my hearing and I should not stop the drug. I believed her....what a fool I am!!!

Today I woke up and I cannot hear hardly anything even with my hearing aid. I am feeling absolutely crushed.....just needed to rant on about my ear. Sorry if I've offended anyone.

I did an Internet search to see if Lasix and Bumex could cause hearing loss and hearing loss is listed as a side effect. It is a good thing you are seeing and ENT soon. He can probably back you up on what to do. I am Deaf so I don't worry about things like ototoxicity but I can understand why you would. Hope you are able to find a resolution soon.

 

[Strawberry]

Thanks Chesney and Deafmack. I appreciate your responses.

Deafmack ~ Have you been deaf since birth or was it something that happened in your childhood? My hearing has been affected by chronic ear infections I've had since I was very young. I had a mastoid surgery when I was 18 and lost my hearing in that ear. Now it is the remaining ear that is being affected.

I always knew there was a possibility of total deafness so if it happens it won't be a total surprise. I feel that I don't belong to the hearing community nor do I belong to the deaf community since I can't sign very well. No one that I know is able to 'sign' either. If I go completely deaf it will make communication very difficult. And for that I am really scared.

 

[Beetus97]

Loop diuretics (Lasix, Bumex, etc.) can absolutely cause ototoxicity, I don't care what the doc or nurse says.

You should also avoid Vancomycin, Gentamycin, Tobramycin, and Amikacin if it ever comes up.

 

[Strawberry]

Beetus97 ~ Any idea why the ANP at the clinic would tell me that Bumex has only a very small risk of otoxicity according to her 'sources'? The PA at the ENT dept of UW clinic in Madison told me the same thing. I see a ENT at UW clinic tomorrow. It will be really interesting to hear (if I can by then) what he has to say.


Ironic that you should mention Gentamycin because that is one drug I know 100% that I am allergic too. It produced facial numbness, trouble swallowing and breathing plus otoxicity. Thank You for taking time to write a post - very much appreciated.

 

[Beetus97]

Beetus97 ~ Any idea why the ANP at the clinic would tell me that Bumex has only a very small risk of otoxicity according to her 'sources'?

Compared to other agents in that class (ethacrynic acid, lasix) the risk is relatively low. And most sources do report 1% or less of the population may experience ear problems. For a person without hearing damage, it is a side effect one might never see. However, since you had ear issues to begin with, I think they should have taken into account the fact that it could affect you differently or be more likely.

1% may seem small in a sample of 100, but it translates to 10,000 out of 1 million. They shouldn't dismiss your symptoms simply because it's "not likely."

I am irritated for you by this situation.

 

[Strawberry]

IF there was a possible side effect of hearing loss with either Lasix or Bumex, I would have preferred the Doctor to advise me ahead of time. It isn't fun finding out the hard way.

 

[deafmack]

Thanks Chesney and Deafmack. I appreciate your responses.

Deafmack ~ Have you been deaf since birth or was it something that happened in your childhood? My hearing has been affected by chronic ear infections I've had since I was very young. I had a mastoid surgery when I was 18 and lost my hearing in that ear. Now it is the remaining ear that is being affected.

I always knew there was a possibility of total deafness so if it happens it won't be a total surprise. I feel that I don't belong to the hearing community nor do I belong to the deaf community since I can't sign very well. No one that I know is able to 'sign' either. If I go completely deaf it will make communication very difficult. And for that I am really scared.

There is progressive genetic deafness in my family. I learned signs before my Hearing decided to retire as I was living in a school for the Deaf and working to help pay for my college expenses. I am pretty much a regular in the Deaf Community and do sign fluently which has been a life saver for me. Since I already knew signs it was not a far leap into the Deaf World. You can still learn signs if you want. Join a community college class or a sign language group that is learning. Get yourself around other Deaf who sign. I have several friends who did not learn signs till they were in their 60's. We Deaf are inherently patient and will be glad to teach a person signs as long as they are committed to learning.
The other thing is joing groups like ALDA Association of Late-Deafened Adults and SHHH or Self Help for the Hard of Hearing (I think SHHH has a different name now.) Also be open to using things like CapTel which is free and is offered by the State Relay Services and also by Sprint Relay and other Relay companies. It allows you to have a phone where you can use your own voice but see the other person's words printed out on the screen while you are stil listening to them. I have a friend that uses CapTel and loves it. You can go online at the Sprint Relay Store and see which devices use Captel which you can download onto your cellphone. It is free to use.
Also you can get a phone that plugs into a landline that does the same thing.
For TV there is closed captioning. For meetings you have the right to ask for the procedings to be captioned so you can take part and know what is going on.
Yes, Deafness can be frustrating but it doesn't have to be. There are some really good resources out there and the we in the Deaf Community are a great place to start. If you get a chance and there is a Deaf Expo in your area go to one. I am in fact going to one this Saturday.
Here is wishing you the best.

 

[Strawberry]

Thank you deafmack for all of the information you've provided. I will make a printed copy of your response for future reference. Part of my hearing disability is also genetic in nature.

Let us know how the deaf expo went for you.

 

[Jen]

I'm very sorry for your difficulty. In 2005 I awoke one morning completely deaf in my right ear. I had no ear infection and no symptoms of ANYTHING prior to that morning. I spent many months trying to negotiate with whoever inhabits the Ether to return my hearing, but it didn't seem like a priority to anyone but me (LOL). To this day, if I had to choose between replacing my hearing or my pancreas, the ear would win out hands down!

Your experience is really an object lesson in why it's SO important for people to read the prescribing information pamphlet that comes with every medication. Doctors should too, but they won't. The onus falls on us as consumers to be educated and to advocate for ourselves.

I hope the ENT can help. Please let us know how you do.

Jen

 

[deafmack]

Went to the Deaf Expo early and I mean early. There was so much to see and do. Tons of displays and a chance to try out different things and equipment. Got a new alarm clock called the Sonic Boom. It has changeable pitch and tone and volume, plus you can plug a lamp into it and a vibrator that goes under your pillow or mattress so that there is no way you will sleep through the alarm. It shakes your bed, flashes a light and for those who are hard of hearing it has an alarm guaranteed to "wake the dead".
I also signed up with Sprint Relay and am waiting for my EVO 4G phone to arrive in the next week or so with Data Plan only. There were several shows going on as well. Be prepared if you get a chance to go to one to spend the day. Just for info if you do decide to get a data plan only phone with Sprint, you have to go through the Sprint Relay Store. You cannot go through the regular Sprint Store. Of course other phone companies also have plans as well so you want to look at different companies and see what they offer and what works best for you.
Of course spent a lot of the time talking with friends who showed up and meeting a lot of people learing American Sign Language for the first time.
I am sure it was a learning experience for them as well.
As to which I would pick to replace, it would be my pancreas. I can live without hearing but you can't live without a pancreas. Of course it is all in one's perspective.

 

[Strawberry]

So sorry Jen for your situation. That must have been a frightening thing to wake up and not be able to hear from one ear.

I know of another man who was a piano tuner by trade and was attending a convention in San Francisco. In the middle of the particular lecture he was attending, he realized that all of a sudden he could not hear at all. He asked a friend to take him to the hospital as he was extremely dizzy as well. After many test and several days in the hospital, he recovered the hearing in one ear but not both. His situation essentially robbed him of his 'occupation' and he had to retire from tuning pianos. Prior to that he had worked all over the Midwest area tuning pianos for many, many people.

 

[Philly Bud]

Hey Strawberry ...

Pul - LEEZE!!! You're not offending anyone. Everyone in this forum is dealing with something in our bodies that is malfunctioning. I wish I could say some magic words to make you feel better.

My hearing issue appeared about 1 year ago: TINNITUS. I am plagued with this sound in my head that won't go away. Sounds sorta like the "crickets" or "tree frogs" you hear on a summer evening in a country meadow. Or standing under noisy high tension electrical wires that hum. Went to an Ear/Nose/Throat specialist (not ear wax build-up or water behind the ear) who sent me to an Audiologist. They discovered I had hearing loss in a particular high pitch frequency.

In my opinion it's a good idea to see the specialists and learn what all your options for treatment are. Sometimes there is nothing more we can do, and we just have to serenely accept the situation and still appreciate life even with our disability. The world is a beautiful place and filled with wonderful people, and having a disability won't change that.

Sending you my warmest regards.:hug: