Hearing Loss in Upper Frequencies Due to Ototoxic Meds

I have lost a lot of my hearing range...I have no hearing at all around 9khz up, starts to fall off sharply at 6khz. I have been tested at the higher frequencies and could not detect anything beyond this range. My tinnitus seems to be a mix of sounds up and beyond this mark. Hearing is painful (severe H), even my own voice at normal volume is hard to take. Also, My ears are in pain even when little or no sound is around me. My ears seem to be straining no matter what I do. They also flutter around and spasm at a lot of the time (they really feel totally destroyed). The tinnitus also seems to inflict pain, I guess becasue my ears/brain see it as loud noise and i feel it the same way as I would if blasting noise into my ears 24/7.

I spend a lot of time laying in bed with light sounds in the dark. It seems to calm the pain laying on my ears and also being in close to quiet spaces helps slightly. Unfortunately I am spending up to 20 hours a day in bed for weeks straight at times, sometimes not seeing the light of day this entire time. I feel as though I am kind of loosing a grip on my sanity....starting to talk to myself, not really knowing when I'm sleeping or awake, not knowing if it's day or night at times etc etc. So this seemed to be a double edged sword....I do force myself up and around and out skating outside if the rink is empty but I quickly feel as though I need to return to bed as the pain and the ringing gets unbearable (especially with ear plugs in) and I quickly exhaust and feel I need to rush home.

This might be a rare situation but just curious if anyone else has lost a wide range of hearing (ALL AT ONCE) like this and what their experience has been like.

Thanks

Telis

 

@Telis you need help. This is ridiculous. @Dr. Nagler maybe you could recommend someone for telis to see?

Telis, I don't even know what to say. I realize you claim this was caused by meds so maybe you are nervous to try more but I do know many . including myself would not be able to function with my severe H without them.

I hope you find something, I feel terrible for you.

 

How do you know this is because of ototoxic meds? It certainly is true that those can cause hearing loss and T. In principle a hearing aid could help, but I've understood that they don't typically work in the higher frequencies.

 

Hi Lynn...yes I'm nervous to try meds. My T started at probably a .05 out of 10. A few visits to the doc and each time a new med...the last being antibiotic ear drops which I feel did 90% of the damage on already worked over ears from the other medications.

I never ever go to the doctors...the one time I do for minor T caused by a blocked ear, this is what happened. Frustrating.

I don't think there is a lot the doctors can do. I was just curious if other people had their ears destroyed like this.

Thanks for the post

 

Well my hearing has been perfect my entire life. I have never had ringing, not once. I blocked up my ear performing the Valsalva method after a workout, this lasted weeks. I kept performing this method until a slight ringing started, went to the doctor and started taking sprays, sleeping pills, adivan, effexor etc. things went from a .05 to a 5 quickly, I knew nothing about meds. The last thing I took was ciprodex ear drops and my T exploded over a couple of doses. I could actually feel them burning the insides of my ears, very extreme pain. I thought maybe this was clearing things up. Pretty dumb I know. But like I say I had very little if any experience with meds. I have prob taken antibiotics once in my life, I knew nothing, I just did what the doctors told me. I stuck with all the meds in the face of worsening condition, I was clueless

 

An abundance of meds will do harm. A few of the right ones, I am hopeing will help my sanity and abilities to function. I managed a 1/2 day up today. it's a real struggle to exist. Yes Telis even with my fluctuating T I feel so compromised.
But I do suggest cutting back on alcohol and weed if you want to. It can't help especially during the day.
I hope things get better for you.

 

I smoke and drink while I'm up, which isn't very often so it's not too bad. Doesn't seem to have a big affect on my T and H anyway. Helps with pain a bit, safer than pills as well

 

And I don't drink and smoke excessively so I'm not sure why I need to cut back. I think that is the least of my worries right now actually.

 

Oh man!...I'm sorry your going through this Telis! I've been reading your posts and I'm horrified with your situation!

I also used alcohol when my T started and when it got worse last year, drinking to keep me calm, lower the reaction, to help get some sleep and despite that amount of alcohol not being "healthy" I do believe it helped me cope during my darkest moments, drink if you have to, to just get by man, I totally get your unsure about pills, I'm the same.

 

@Telis
Are you sure your hearing loss is because of ototoxic meds?
I have good hearing up to 6 kHz, then it goes down like a ski slope.
The standard tests go only up to 10 kHz. But there are apps on the web where I can listen to all frequencies. And I have to put the volume higher and higher to hear the high frequencies. So I definitely have hearing loss there.
During my T onset, I had no noise exposure, no injury, no meds, nothing.
So I am very sure, the hearing loss was already there. Probably age-related (I am 45) and due to motorcycles, visiting clubs and concerts.
The higher frequencies die earlier since they are not that good protected.

 

Well I took ototoxic meds and my hearing disappeared and I developed T and H with constant ear pain. I have had perfect hearing all my life. I don't know, seems kind of an obvious cause doesn't it? Never had ear issues until I took ototoxic meds. I don't know, seems simple to me. I went partially deaf and directly before that I took a combo of meds that are known to do this. Don't think I have to be a detective to figure this one out.

I'm not talking about hearing loss in the high frequencies, I'm talking totally gone...deaf, Nothing!! You are telling me you can't hear a 10khz test tone full blast on headphones? I can't, nor can I hear anything beyond that. I also had this tested professionally at the audiologist, she said no problem, we do high frequency testing all the time for cancer patients taking chemo or anyone taking ototoxic drugs. Yes she confirmed I have lost all my hearing in the upper range, not my imagination or my ripe old age of 39 when this all happened.

 

Understood. But you do not need hearing in the high frequencies.
For example most hearing aids go only up to 10 kHz.
There is not much in those areas you can listen to.
So you would not miss them when you speak with someone.
Your T is in those areas.

 

Which combo of meds caused it?
And if drinking helps you, I don't mean to criticize you. I'm just trying to help in some way. Alcohol and some meds contributed to my worsening.

 

No you are right, I can hear speech fine, it's just when things make noises in those ranges things become extremely painful. Or if I listen to music it's all clipped and doesn't sound like music anymore at all. Sounds like I'm listening through a tunnel. I loved music all my life, I can't listen to it like this. I don't bother. Not to mention the pain it inflicts now.

Also my T is at 9khz-16khz approx with no notches of hearing around it at all. All these tones competing with each other at once.

 

I don't know...adivan, effexor, Zoplicone, ciprodex antibiotic ear drops, OTC nasal spray, decongestants and more. Then coming of all the shit at once prob made things worse. I don't know, it's a big shit show. All I know is I had perfect ears prior to this now my ears are totally ruined. I'm sure the alcohol doesn't help now either or the weed. I lived a nice clean life prior to this nightmare. The picture of health just a year ago, now I can't get out of bed. And I sit here and complain to people publicly instead of taking it like a man which is even more humiliating. Sorry if I come off rude. I'm really pissed off as I'm sure everyone is. And my family has to suffer with this crap as well. My parents don't have their son anymore, just some miserable dick head with ear issues.

This shit medication was all given to me because I had a slightly blocked ear with a tiny tiny buzz!!!! I don't take drugs and I was loaded up. So stupid of me

 

Come on Telis. Stop beating yourself up. It was a really unfortunate set of circumstances just like all of us here.
You are their son and they love you I am sure. You walk with your mom and I bet those walks make you fell a little better.
We all have to move forward. I don't know what that really means except that we can't go back. I wish I could and been more careful with music and hearing loss and meds, but none of us knew where this was leading us.

Find some compassion toward yourself. Bitterness makes it worse.
I'm sorry you feel this bad. Sad part is I feel the same so much of the time.

Find some peace. When you do send it our way as well.

 

Thanks Larry. I will try

 

Telis, you took the doctors advice in trust as I know many if not all of us would have. You wanted help. I would have done exactly the same as you. I feel for you, dude.

You said being in close to quiet places brings some relief. I have the same experience. The acoustics of an enclosed space like an alcove or corner of the room seems to help me too.

This T is like an endurance test or something. It gets you tired quickly. We cannot by nature like it any more than a mouse can fall in love with a cat. It's like an audible wound that doesn't heal, even with time on our side. But try not to let the emotional part of this hell we got overwhelm you. Let it wash over you, but hold on to the truth about your life. You're stronger than this affliction. Your parents love you no matter what.

 

@Telis
The only difference between us it seems is the age (I'm 25) I too lived a clean & healthy life prior to this, now I'm living some messed up nightmare.
I feel seriously unbalanced, in myself & physically, I'm constantly talking to myself & feel like I'm losing my mind. Before this all started I was taking asprin almost every day due to constant headaches from stress, coupled with the fact I loved listening to my music with either a couple glasses of whiskey or weed. My ENT & GP constantly wave me off & throw meds at me for depression without really listening to me! It's been 16 months & they've yet to bother testing if it's an inner ear problem like ototoxicity.
I live with my girlfriend atm & it's putting a serious strain on our relationship, she wants to enjoy her life & I'm sitting here in bed constantly out of it, I feel like I'm holding her back & even see it in the way she looks at me sometimes.
I'm really close to the edge man, used to be so full of confidence & now I feel like a broke shell of the man I once was.

 

All these replies are just so heartbreaking. I just got recently diagnosed with tinnitus and I feel the same way. I'm a musican and I can't even pick up my instrument because the sound hurts my ears too much. I'm so sorry for all of the struggles you're going through Telis. I hope that we can all find a way out of this hell hole.

 

Sorry to hear this. I know what you mean...my confidence has gone from a 10 to a zero. Hard to feel like a man when you don't feel capable of even coping with the day. Things get even further compounded by people not taking this thing seriously. I have been told by close family that I'm being dramatic, a whiner, to man up etc which only adds to the self hate that this thing has caused me. The doctors as well....ahhhh they can't see it so no biggie, take some pills, go for a walk, it's just depression...nothing to do with ear pain 24 7!! I now just suffer silently, just keep it to myself for the most part, it feels like some dirty secret I should be ashamed of. I used to like people and be very very outgoing, the ignorance and lack of empathy people display has made me sick, I can no longer tolerate most people, including the people I thought I was once very close to.

I guess we take it one day at a time and try and rebuild. I don't know, it's quite a challenge. We are changed forever, things will never be the same. Tough to wrap the head around.

Hang in there man. You definately arent alone in your suffering.

 

@Kopesy
My wife has survived cancer for the moment. She feels much better and has plans for the future. Of course if you have cancer, you never know when it comes back. So you want having some good years.

She said she will never leave me. But who wants to live with someone with severe T, depression and anxiety? I sometimes think that I should make place for someone else. Oh no, I should not think this way. I must go through it.

Interestingly, my T today is not too bad. Mmmh, I guess it is the same like everyday. but I had moments where I was unaware of it. Nevertheless, it is all so difficult. Working, staying calm, thinking positive, being happy and confident, just functioning, all so difficult. And today is such a day where I don't know if it is only T or something else. I feel much limited. On the positive side, I can do still a lot of things.

Guys, stay strong.

 

I'm so sorry that all of you are going through this. All I can say is keep pushing ahead because things can get better.
My T onset came after taking large doses of ibuprofen - that good 'ol OTC Advil - following dental surgery and a back injury.
I never took ibuprofen much - in fact, I only bought the bottle at the recommendation of the dental surgeon who did my (botched) root canal. Ultimately I had to have the tooth pulled. Four visits to the dentist office. Lots of Novocaine and Advil.
The ridiculous thing is, looking back on it now after nearly five months, I really don't think I needed to take the pills. I did it pretty much to avoid my fear of pain.
The ENTs have been extremely skeptical that my T was caused by meds, given that the conventional wisdom is that aspirin and ibuprofen only cause temporary T.
But I've had it for four months now.
I'm still hanging onto hope that the pills did not do major damage and my T will diminish substantially with time, and that I can habituate well to whatever remains.

Hang in there, guys.
I am steadfastly avoiding any ototoxic meds, probably for the rest of my life.
Unless I am going to die without them, I won't take any ototoxins.

 

I too am sorry you are going through this, especially @Telis and others with very severe symptoms. Nobody should make light of it, and if they do, then they shouldn't be classed as true friends or support. I have had this for three months and it is still tough, and I say this with what is moderate T that I don't hear much during the day. You do always have hope though, there will be some decent cures in the next few years, I am sure of it. I think when it's really severe, people should be given priority for clinical trials if they are willing to go for it.