Tinnitus/Hypercusis Is Holding Me Back from Having a Normal Life

[Christina]

Hello everyone,

My name is Christina and I am 27 years old. I first got tinnitus on January 30th, 2015 and the past year by far, has been the most difficult year I have ever experienced. I have pretty significant but intermittent hyperacusis along with T, which has made going out and living a normal life as a young person impossible. My tinnitus over the last year first started in my left ear and was relatively mild. But slowly, it has moved over to my right ear over the course of the last few months, which has caused me tremendous stress and fear of the future ahead.

I was told by my general practitioner, ENT, and audiologist that in time, I would habituate to my tinnitus and that after my infections were cleared up, there was a strong chance my tinnitus would simply go away ( I had several bouts of tonsillitis and took too many rounds of ototoxic antibiotics, which I strongly believe lead to my development of tinnitus). Over the last year, my tinnitus has only worsened and despite being told that I can continue life as normal and just wear earplugs, this has not been the case at all.

Every time, I attempt to go out and do things that I used to do i.e. (go out to a bar, concert, play my violin, go to a sports bar, have a few drinks) my tinnitus ALWAYS increases. It spikes yes, but it remains permanently worse. I had one margarita with a friend of mine a few weeks ago and my tinnitus clicked on in my right ear and has been through the roof ever since. A few weeks ago, I tried to go out to a sports bar with my boyfriend and his family (with ear plugs, of course) and I eventually had to leave about an hour into the game because my hyperacusis came back with a vengeance. My boyfriend was sweet enough to understand that I cannot deal with noise as I did previously, but I broke down because for once--I just wanted to be a normal 20-something and go out and enjoy myself.

I am a classically trained violinist and vocalist of over 16 years and music means absolutely everything to me. I have tried to play my violin like I used to, but even with ear plugs, the pitch of my instrument hurts my ears too much for me to play. I normally do not complain or try to feel sorry for myself about my tinnitus, but honestly, I want my life back!!!! I get so depressed and have had suicidal thoughts sometimes, because when I think about everything I used to do, and everything I have tried to do since having tinnitus--tinnitus always seems to get in the way of me pursuing what I want to do. I cannot go on living like this.

What is the point of life if you cannot have the freedom to enjoy daily life activities or pursue the career you have spent your entire life preparing for? I have tried to habituate to my tinnitus, which I ended up doing in the beginning. But even with earplugs, I always end up paying for going out and cannot handle the noise of these louder places as it causes me severe ear pain. I do not know how people play gigs, my ears are far too sensitive. I'm already at a point with my tinnitus that if it gets much louder, I do not know how I will be able to cope. I am twenty-seven years old....how am I supposed to live with this for the rest of my life? Or until we find a cure, whenever that will be?

Please help...I am at a loss of what to do. There are events in my life that I must go to and events for my job that I must attend as a manager and I fear that my tinnitus will ultimately get in the way of these as well. Anything you can offer to help me, I'd greatly appreciate it.
Thank you.

 

[Michael Leigh]

@Christina
I am sorry to hear about the difficulties your tinnitus and hyperacusis are causing you. You haven't said if you are having any treatment? One of the best is TRT (Tinnitus retraining therapy). It involves the wearing of wngs (white noise generators) and having tinnitus counselling, which is a vital part of the treatment.

I suggest you have a word with your ENT Dr, to find out if this treatment would be suitable for you and whether it is available.
Please click on the link below, and it will take you to a series of posts that I believe you will find helpful.
All the best
Michael
https://www.tinnitustalk.com/search/member?user_id=3134&content=thread

PS: Although earplugs can be helpful, it is advisable to only wear them in noisy environments and not to suppress normal everyday sounds. If one does this, there is the risk of making the auditory system more sensitive.

 

[Zorro!]

@Christina

I would second Michael's recommendations. I would also ask if you are being treated for anxiety/depression? It sounds like you're being overwhelmed by trying to deal with this horrible issue on your own and could really benefit from at least talking to someone in the behavioral health field. There is a good chance you could get some relief from the stress going on right now.

The good thing is that you are young and strong, so hang in there. Many others have been where you are right now and they have gone on to achieve happiness again. It can and does happen.

 

[Lmsdocjeff]

Christina,
Don't give up just yet. I can relate to your frustration. I know there are people who tell you they know what you're going through. They don't! They can not possibly know how T is affecting your thoughts and emotions. No one truly knows the anger and even hurt you feel. Please don't give up. I think you greatly under estimate your self. Yes, you are young but you still have years of training in music. During those years of training you not only used your sense of hearing with the music, you used other senses as well. It sounds like in dealing with T you have temporarily lost touch with your visual, kenesthetic and emotional skills you have developed with music as well. These same skills developed with your music can be applied to other aspects of your life. Take a few deep breaths and trust yourself. You know more than you are allowing yourself to apply here.
I've been a Psychologist for over 30 years. I've been living with T for some 20 years. It's been quite humbling.

 

[glynis]

Warm welcome to the forum Christina,
You have had great. Advice already and I agree with Zorro that talking therapy will help you release some built up emotions and help move forward feeling more positive .

I hope in time you can carry on with your special talants and time will tell.

Tinnitus comes with lots of uwanted emotions that can be as hard as the sound itself and over time you will work through these emotions and medication for some people is the best thing.

Keep posting for support as we are here round the clock to support you.....lots of love glynis

 

[Bobby B]

My strategy now is to focus on people who are worse off than myself instead of looking at people who enjoy themselves listening to music in bars and talking loud - which is a sure way to make me depressed and anxious right away ..which in turn makes my brain amplify the T 100 fold to make it sound like a jet engine inside my big ear muffs that I wear outside..

Yes my ears may be fucked up to some degree and my brain is going crazy with the loud hiss BUT I still have my eyes, nose, hair, taste , sexual organs, limbs and internal organs in working order...

That is not bad at all, compared to someone in a wheel chair or a lot worse struggling with sickness or lost limbs and T and hearing loss like millions of war veterans over the years.

Yes life may be a bit less fun and certainly different BUT again I try to focus on how I can enjoy it with the rest of my "body parts"..even better I am free to move around and not in jail either..I can enjoy a sunset or a movie with low sound and some T in it - yes but nevertheless its better than to be in sitting in jail in a wheelchair without legs and having cancer all at the same time...and guards shouting at you etc..

There are tons of things you can still enjoy in this life with the rest of the senses ..so its up to us to refocus on those even if this mean giving up some of the music related passion or work...its only temporary anyway I am confident that there will be some kind of relief or even a cure within 10 years so its really a case of enduring 10 years which isn't too bad..maybe there will even be better sound masking apps on the iPhone 18s by then !

 

[Christina]

Thank you everyone for your responses, they are greatly appreciated. I will try to address everyone's comments individually, if I may.

@Michael Leigh - Unfortunately, ENT physicians have not been the most helpful to me in any regard. The first time I noticed my tinnitus back in January of this year, I was simply given a pamphlet and told that I needed to "deal with it" and just buy a white noise generator to block out everything. I have a white noise generator already, but sometimes it aggravates the noise and makes it a bit louder. Soft rain usually helps to some degree, it really depends. I have not tried TRT, although, I have heard it does provide relief for some tinnitus sufferers. From what I understand, it is an approach designed to interrupt the processing so that the brain naturally doesn't focus on the T so much. As I said prior, I do use a white noise generator at home, and sometimes at work as it helps me concentrate, but I think masking it all the time would actually aggravate my hypercusis even more. For the record, I do not use earplugs all the time, even though certain normal sounds do bother me. I only use earplugs when I know the environment will be harmful to my ears such as concerts, bars, super noisy restaurants, etc. It's just frustrating that even with earplugs, I cannot seem to prevent my T from increasing permanently, which is really causing me the most distress.

@Zorro! - I have spoken with a mental health professional as the time of my onset was riddled with other challenges in my life as well (job loss, health concerns, etc). I spoke to the therapist and she seemed to sympathize with me although, it was difficult to really explain and help her understand what tinnitus is like because she has never experienced it herself. I found myself talking about my tinnitus so much that often times, she was just at a loss for words. She would apologize and say how sorry she was to hear about my struggle, but I do not think it personally did much for me. I find that talking to others who have it or at least experienced it to some degree is far more helpful. The depression really comes and goes, however. I find that recently as it is the holiday season and many of my family and friends have wanted me to join them for holiday events that the noise threshold has been to much for me, which really makes me feel left out and isolated. Personally, I would never really hurt myself or take my life but tinnitus certainly has a way of bringing out the worst in everyone.

@Lmsdocjeff - Thank you for your kind words. I find that when I discuss my tinnitus at length, it greatly upsets those closest to me who only want me to think positively about it. But sometimes, the best thing to do is RANT and RAVE about how much tinnitus sucks. I do try to be positive most days, but it is a constant struggle when I miss my music so much and the feeling of happiness that only it can give me. I have spent my whole life training to be a performer and the thought of giving up my dream because of tinnitus, breaks my heart in a way I cannot begin to express. Do you often get patients who have tinnitus? I have talked to a therapist without tinnitus, which didn't really provide me with much comfort. I imagine if I did talk to someone who had it, at least, I wouldn't feel so alone.

@glynis - I appreciate your warm welcome. This community is fantastic, and I'm so glad I can share my experiences among friends and like-minded individuals. I have spoken to a therapist, as I said in my prior responses above, but I didn't find it very helpful. She did not have tinnitus, and when I talked about it, it just made me feel like I was having a pity party, so I eventually stopped. It also only made me realize how much it is affecting every facet of my life. I have had tinnitus for about 11 months now, but I am seriously hoping that it will eventually go away so I can get back to my music. I have given so much of my life to the art of music, I can only pray that I get to return to what I truly love soon. I have been fearful of trying medication as I do not want to develop a dependence to anything. When I cannot sleep, I sometimes take melatonin, which helps a bit. But, I am scared to take anything stronger; I do not even take ibuprofen for headaches anymore as it increases my T.

@Bobby B - You are right. Even with tinnitus, we must still count our blessings. I do try to practice gratitude most days, but I think because I have depended so much on my ears for music, it has been such a difficult battle for me. I guess I really took for granted how much I need silence for everything in my life (sanity, music, etc). I hope to one day regain it, and I also hope that we find a cure soon!

Thank you all for your help, it truly means so much!

 

[Michael Leigh]

@Christina
Some ENT Drs prefer not to treat tinnitus until 6 months has elapsed and in some cases longer. The reason being, the ear is a very delicate organ and the advice is to leave things alone and wait to see what happens. If a person is experiencing additional symptoms such as: pain in the ear, dizziness, balance problems or deafness intervention will often be sooner.

However, you have had your symptoms for well over 6 months and I think you should seek a second opinion from another ENT Dr, if your current one isn't prepared to do more which I will explain. White noise generators are good but they are normally used as part of TRT, to get the maximum benefit and should be adjusted correctly when worn. If they are not they can irritate the auditory system making the tinnitus and hyperacusis more sensitive.

It is advisable to set the level of your white noise generators slightly below your tinnitus. Ideally, they should be worn for up to 8 to 10 hrs a day. Over time, they will desensitise your auditory system so your hyperacusis will not be so much of a problem. They will treat the tinnitus by making the brain focus on the white noise and slowly push the tinnitus into the background making it less noticeable. The best results are obtained with this treatment when a patient, also has regularly tinnitus counselling sessions with their hearing therapist. Counselling is vital, as it helps to take away and demystify the negative thinking towards tinnitus, that many people have and helps them to no longer see the condition as a threat. This treatment is not a quick fix (but can be very effective) and typically lasts up to 18 months.

I believe this treatment will benefit you but please seek the advice of a ENT Doctor. Below is a post that I wrote, some time ago that you might find helpful. There are others on the link that I sent you.

All the best
Michael

Hyperacusis.

Two questions often asked about tinnitus are: How long does it take to habituate? How do I know if I have hyperacusis?

One of the main causes of tinnitus is exposure to loud noise. Quite often though hyperacusis, (sensitivity to sounds) accompanies the condition. This is because the nerves in the auditory pathway have been subjected to noise trauma and thus become highly sensitised. Hyperacusis can be extremely painful. It can cause tinnitus to spike sometimes making it last for days until it settles down again. Within this time the person affected can be in a lot of discomfort.

Music that was once pleasurable to listen to through a home music system or radio is now an ordeal so one prefers not to listen to it. The closing of doors, washing up of kitchen plates and cutlery is enough to send a person running for cover, as it can feel like a pneumatic drill is piercing through your ears and head. It can become such a problem a person is afraid to venture outside their home in fear of road traffic noise sparking an increase in their tinnitus due to their sensitivity to sound.

One of the best ways to treat hyperacusis is by using "sound enrichment". This can be achieved in many ways but I one of the best to wear white noise generators. Two should be worn to keep your auditory system in balance. The sound level of these devices must be adjusted correctly so as not to cause further irritation to a person's auditory system, which can make the hyperacusis and tinnitus worse. It is best to always make sure their sound levels are set just below the tinnitus. Wngs are usually worn for up to ten hours a day. Two things are achieved over time.

The hearing system is constantly subjected to low-level non-intrusive white noise, which will help to desensitise it. Secondly, they help the brain to focus less on the tinnitus and push it further into the background making it less noticeable. This form of treatment is also known as TRT.

An alternative to wngs is to use a tabletop sound machine that plays nature sounds. This can be used for sound enrichment to help the healing process of hyperacusis. Again it is best to set the sound level just below the tinnitus. As previously explained sound machines can be very useful at night by the bedside and in the day used to fill in the background ambiance in room.

Treating hyperacusis takes time as there is no quick fix and everyone will respond to treatment differently.
Please bare in mind that a person with tinnitus and hyperacuisis, if the hyperacusis is left untreated sensitivity to sound will always remain a problem. In some cases hyperacusis can get better naturally without using sound enrichment but there is no guarantee.

A word of caution. Some people use earplugs to help suppress external sounds because of their sensitivity to sound. Earplugs are available but should only be used when in noisy surroundings and not to suppress normal every day sounds, as doing so can prevent the healing process of hyperacusis.

Habituating to Tinnitus.

Habituating to tinnitus often seems shrouded in mystery for the more seriously affected people that are in distress and have had to seek help at ENT. It can be particularly difficult for people that are new to tinnitus to comprehend. How does one know when they have habituated to their T and more importantly what does this actually mean?

The following doesn't apply in every case of tinnitus for there are some people that have large fluctuations in their T and every day can be a different experience. This is one of the most severe forms of tinnitus and medications may be required to help cope with the condition. Habituating to this type of tinnitus is still possible to an extent but does present additional problems.

To others I will say this: You'll know when you have habituated to your T regardless of whatever treatment you are using via ENT etc as your brain will over time push it further into the background so it becomes less significant, in a similar way to the people that have mild tinnitus. Although your T may be present and on occasions it will spike, over time it will cease to be so much of a problem unless you deliberately focus on it and bring it to the forefront of your mind.

 

[NineNails]

@Christina , I feel you. I'm also 20-something and my life is rendered to torture 24/7. I've extreme reactive T. Just open the faucet makes my T explode. It's pure insanity.
Anybody telling me that I could continue my life with this condition as normal as possible, I'd like to punch in the face. They've absolutely no clue what they're talking about. They just compare apples with oranges.
What is the point of life if you cannot have the freedom to enjoy daily life activities or pursue your career? That's the very question I ask myself every day. And there's no answer but excuses and empty euphemisms.
Oh, and beware TRT is money business.

@Bobby B , you compare yourself with those worse off than you. So you need the misery of others to feel good about yourself. What does this mindset say about you?
You think that wheelchair people are worse off than you. And that's probably right, if you've very mild T; and you've if you can mask it! But if you've it extreme and reactive nobody in a wheelchair would want to trade with you. Why, because they can sleep, they can listen to music, they can enjoy reading a book, they can concentrate, essentially they can do everything -- except walking with their legs.
Furthermore, how are the chances that the nerves in the spine can be fixed one day versus the nerves in a case (the cochlea) that's smaller than a pea inside the human skull? Plus T is invisible and 90% get used to it for it's so quiet. At least, that's what psychologists are preaching.

 

[Michael Leigh]

@NineNails @Bobby B
NineNails,
I fully agree with you. Bobby B has no idea what severe intrusive tinnitus can do to a person. If he did, he would have thought twice before writing such comments. Many of my posts are written to help people to have a positive outlook on life: https://www.tinnitustalk.com/search/member?user_id=3134&content=thread
But, there is a another side to tinnitus that some would like to forget about and for good reason. However, I will address it here:
Tinnitus comes in many forms and intensities, and no two people experience it the same. It can be: mild, moderate or severe. In my opinion, when tinnitus is severe and intrusive, it can be very debilitating and is comparable to any serious medical condition, simply because of what it's able to do to person's state of mind. One only has to look on this forum or on Google to find this out. I'm sure people know what I'm referring to.

Michael

 

[Christina]

@NineNails - I am sorry to hear your T is also very reactive. How long have you had T? Do you have hyperacusis as well? I hate it when people dismiss T....it is the most aggravating thing in the world. Most of my friends and family are completely speechless when I talk about how much I go through. It just shows how invisible T is to the outside population. My loved ones do the best they can to give me hope, but often times, it makes me feel so isolated because I feel that they just can't relate. I am sure that compared to others in the military and who have had long-term tinnitus, my T would be considered very mild. But, what concerns me most is just how loud my T has gotten over the last 11 months. In regard to the comments that @Bobby B made in the previous post, I do not think he probably meant to be so discouraging. I think it may just help him to focus on what he can do than what he can't, which I can certainly relate to as well. I try to focus on my abilities. I do have a job, although it is not related to music; it does allow me to pay my bills and live a somewhat comfortable life. But, would I trade it all to go back to a life without T where I can truly live a life that gives me the ability to perform my music and play my instrument? ABSOLUTELY.
I would give anything for that. I really hope we don't have to deal with this condition forever, my friend. I hope we can find a way through.

@Michael Leigh - Thank you so much for your insight, it has really helped me. I've been reading your posts and I have found them very helpful as well as hopeful. It's interesting because my father also developed T about three or four years ago. He mentioned a treatment that was helping him....I wonder if it was TRT. I did go to an audiologist who measured my T on a decibel scale and seemed perplexed as to why my T would bother me so much. She measured it and said it only registered at a "few decibels." After she said that, I did not find the audiologist helpful either to be honest. I spilled my heart out to her and told her that I was desperate for any treatment to help me cope and she seemed to shirk off my responses. She recommended counseling and sent me on my way. I didn't find counseling all that helpful though. Discussing my T at length to others without tinnitus is very frustrating. I get lots of pity but no real support. I will have to look into going to another ENT---has anyone you know seen an otologist for tinnitus? Or do ENT's primarily deal with tinnitus? It seems that there is so much in regard to tinnitus that remains still undiscovered.

Just a thought as ear maskers obviously help people---what if they developed a pill that would reduce damage to T after a loud event? For instance, you want to go out for one night and notice that even afterwards, the spike of your T is much louder. Pop a pill and boom, it would return to a baseline. If that ever happens, I'm buying it! That would make my life so much better, who's with me?

 

[Michael Leigh]

@Christina. Your suggestion of a pill to reduce loud noise damage to the ear is a good one. I'm sure that if it were developed, it would make someone a lot of money and help many people. At the moment the best we can hope for is to protect our hearing and avoid loud noise.
When I first had tinnitus many years ago, I was also told my tinnitus was going to be measured on a machine. I believe such a device cannot be accurate. No one can know the level of someone's tinnitus or how it is affecting them emotionally.
I suggest you make enquires to find out if there's a hospital/clinic that practices TRT in your area and whether it will be suitable for you. Try to continue with the white noise generators, keeping the volume below your tinnitus. It would be a good idea to use a sound machine at night and not to listen to music through headphones, even at low volume.
If you think I can be of any further help please ask.
Best of luck
Michael

 

[Lmsdocjeff]

You have a gift! Don't give up on music because of T. As a Psychologist who also has T, I am continually learning. As I work together with my patients, we are continually discovering new ways to address T v

 

[Dutchy]

My strategy now is to focus on people who are worse off than myself instead of looking at people who enjoy themselves listening to music in bars and talking loud - which is a sure way to make me depressed and anxious right away ..which in turn makes my brain amplify the T 100 fold to make it sound like a jet engine inside my big ear muffs that I wear outside..

Yes my ears may be fucked up to some degree and my brain is going crazy with the loud hiss BUT I still have my eyes, nose, hair, taste , sexual organs, limbs and internal organs in working order...

That is not bad at all, compared to someone in a wheel chair or a lot worse struggling with sickness or lost limbs and T and hearing loss like millions of war veterans over the years.

Yes life may be a bit less fun and certainly different BUT again I try to focus on how I can enjoy it with the rest of my "body parts"..even better I am free to move around and not in jail either..I can enjoy a sunset or a movie with low sound and some T in it - yes but nevertheless its better than to be in sitting in jail in a wheelchair without legs and having cancer all at the same time...and guards shouting at you etc..

There are tons of things you can still enjoy in this life with the rest of the senses ..so its up to us to refocus on those even if this mean giving up some of the music related passion or work...its only temporary anyway I am confident that there will be some kind of relief or even a cure within 10 years so its really a case of enduring 10 years which isn't too bad..maybe there will even be better sound masking apps on the iPhone 18s by then !

I think nobody is comparing T with a terminal disease,just keep in mind that your T is not always the same as someone elses T especially when H and other ear conditions make it even worse.Enjoying all the things life has to offer is a great thing.One of them is enjoying the silence.It's a psychological struggle all of us have to go trough,some having more to deal with though and they need to find their way.

 

[Christina]

@Lmsdocjeff I do not want to give up my music, that's the last thing I want to do. But I really don't know what choice I have when playing my instrument even with ear protection causes me so much discomfort and will inevitably increase my tinnitus permanently.

Right now, my main concern is that if I continue my music, my tinnitus will eventually be able to be heard over everything. I'm barely hanging by a thread and I honestly think if I was not able to get a break from my tinnitus at all (for instance, I can't hear it in the shower or in the car that loudly) I think I would lose it. I am scared at what would happen if it penetrated every minute of my waking life. Mentally, emotionally & physically, it is hard enough to cope with tinnitus as it is. I cannot bear to think of what my T would be like as a professional musician, especially after consistent noise exposure already.

 

[Dutchy]

@Lmsdocjeff I do not want to give up my music, that's the last thing I want to do. But I really don't know what choice I have when playing my instrument even with ear protection causes me so much discomfort and will inevitably increase my tinnitus permanently.

Right now, my main concern is that if I continue my music, my tinnitus will eventually be able to heard over everything. I'm barely hanging my a thread and I think if I was not able to get a break from my tinnitus at all (for instance, I can't hear it in the shower or in the car that loudly) I think I would lose it. I am scared at what would happen if it penetrated every minute of my waking life. Mentally and emotionally as elll as physically, it is hard enough to cope now. I cannot bear to think of what it would be like as a professional musician.

Will I AM about his tinnitus, " I try to make order out of my disorder ".I'm not sure if this works with H though.
I wouldn't stay away from sound but definitely protect your ears by not exposing them to loud noise.
Give your hearing a chance to heal especially when sensitive to sound.

 

[Bobby B]

Whenever I listen to music - I am not hearing music anymore, its music + a loud hissing sound mixed to it. So its not the same music I was used to and it has lost its appeal.
My option is to crank up the volume but we know its bad in the long term and will only make T worse.
So my options are
1) getting all depressed over this
2)Make a list of 1000 others things I can enjoy doing in this life which do not involve silence or music...and concentrate on these
3)Be grateful that I have full usage of my legs, and all the rest (beside ears)

We know that close to 90% of people with T can get "cured" with TRT/CBT so that's much better than the odds when comparing people in wheelchairs

Also, given the current new drugs being tested, there is a good chance that in 10 years there will be relief and maybe a cure/treatment so its only a matter of 10 years of not listening to music.

in 10 years I will get it back and listen to music all the time, just not now.

In the meantime there are a few things that can also reduce H like LLLT or some experimental drugs so I am trying those as well and my H has greatly improved already on LLLT and the sounds are much better now but T is still here.

That's just my way of dealing with this - not saying this will work with everyone and if you are a professional musician then its going to be hard but I am trying to be positive and realistic at the same time- I want to enjoy the rest of this life no matter what and I will.

 

[vegasjon]

Three years ago, I noticed the ringing. I tried some (snake oil) OTC drops. No help. In time, it got worse. Hyperacusis... Pulsatile tinnitus... Fullness/pressure... Hearing loss. I saw an ENT (he was useless), got an MRI (negative), saw another ENT who referred me to yet another ENT. Many moons passed. More hearing loss. More ringing. Lots of drugs. Diagnosis (eventually): Otosclerosis. Surgery on the worse ear helped - sort of. No more pulsating. No more hyperacusis. The fullness, however, returned with a vengeance. I could barely work. I begged for steroids (the only thing that seemed to work). Eventually, a combo of low salt diet with a diuretic seemed to help. And I finally caved and got hearing aids. I'm already noticing the T less (I just got the hearing aids this week).

I'm 45 years old and curse (literally) the hell I have been through. BUT, as I type this, I feel 100 times better than my darkest days. It's not "normal" - but I can live like this. It took a long time to get here and I can't say for sure it will last, but it gives me hope. I wish the same for you.

 

[Christina]

@Dutchy - I do try to stay away from loud noises. I haven't really played my violin like I used to or really at all honestly, because of my ear sensitivity. I'm wondering if I could even play with more aggressive ear protection like ear muffs and ear plugs? I don't even know. I miss it terribly. I try to make order out of my disorder, but it gets exhausting I think for all of us.

@Bobby B - I understand where you are coming from. We do still have a life to lead whether or not that life includes tinnitus or not. Your outlook certainly helps put things in perspective. During the first 3 months of my tinnitus, I tried to qualify for a trial of the AM-101 injection I think, but my tinnitus was considered idiopathic so I didn't meet the criteria. Do you or anyone else know perhaps what upcoming news there is in regard to treatment? I haven't tried anything except for using a white noise generator but maybe TRT/CBT would help. I have heard about biofeedback as well. What have you tried for your T?

@vegasjon - It sounds like you have been through hell and back---I am glad you are finally getting some relief. I tried some ring relief drops in the beginning when I first got tinnitus, but they didn't help me either. I take magnesium sometimes, and find that it does take the edge off of the ringing to some degree. I can't take steroids, in fact, I think that when I was originally sick with tonsillitis, the steroids may have made the ringing worse but it's hard to tell. With my hyperacusis, I think hearing aids might make it worse. I need to see a different ENT though, the first guy I saw wasn't helpful. Did you ever see an otologist, by chance? Wouldn't they be more helpful in regard to T?

 

[vegasjon]

@Christina
The steroids were really for the fullness and pressure (shots and pills -- both helped a lot). I didn't notice much change with the T. Unfortunately, one really shouldn't rely on steroids if one can avoid it. The disruption caused by the fullness was so bad that I swore I'd be happy to deal forever with the ringing if only I could get rid of the pressure. The cause of THAT was eventually ruled to be some sort of hydrops -- which is somehow related to the otoscelrosis. I cut back on caffeine and salt and am taking the diuretic twice a day. It took several weeks, but the fullness attacks became less frequent. I'm on a two-week stretch right now without any major attacks. Mind you, I still have the T and that may never subside... but I've had so many other problems, I can manage with the ringing as long as the other awfulness stays away. The hearing aids aren't fully programmed yet, but have some T management options that I will try.

I did not see an otologist. The most recent doctor I've been dealing with (the one who performed the surgery) is an MD with specialty in Otolaryngology and a certificate in Neurotology. By most accounts, he is "the guy" here in my community for handling otosclerosis cases. The surgery, by the way, was a stapedotomy... removal of part of a defective bone in the ear and replacement with a prosthetic. Again, this did not help at all in regard to the ringing, but it eliminated some of the other problems (including the hyperacusis).

 

[Christina]

@vegasjon I'm glad the steroids helped. When I first got my T it was accompanied by nausea and vomiting and lightheadedness, but when I got an MRI done, there was no sign of anything abnormal. I'm wondering if it could be something else. My ENT said my tinnitus is idiopathic, which means it has no direct cause. For the longest time, the doctors told me that once my tonsils healed that my tinnitus would most likely go away as it they believed it was caused my recurrent infections. But, I don't really think that's the case at all seeing as that 11 months later, my tonsils have healed and I still have T.

I've never heard of otosclerosis, though. Is that what ultimately brought on the T or was it caused by other factors? I don't know how I got T. Even when I was much younger, I always used earplugs, etc when going out to events, concerts, etc. Have you tried any other treatments for your T such as biofeedback, TRT or anything else? I'm reluctant to try those things, but at the same time---I am desperate to try anything that might help. The qualifications of your doctor seem very solid in regard to treating tinnitus. I wonder if seeing a ENT with a background in nuerotology would be more beneficial. It seems that it would be since T deals with the way the brain processes sound.

 

[vegasjon]

@Christina
I have not tried biofeedback or TRT. Maybe some day down the line. Yes -- they believe the otosclerosis damaged the hair cells and nerves, resulting in the T (and more). I would define my lifestyle -- in regard to risk of hearing damage -- as extremely conservative. I don't have a history of clubbing; I would go maybe a few concerts/sporting events a year. Didn't play in a band... don't work in construction... don't blast music through earbuds. I shouldn't have these problems (so I say).

Good Luck, Christina.

 

[Lmsdocjeff]

Christina,
You are feeling overwhelmed. Yet I sense in your writing that you are expressing fine threads of the solution to this present challenge but you are not aware of it. You say that there are those brief periods when you experience relief from the T. Please tell me more about those times. How long do they last ( the shower and driving)? What are your thoughts about during these times? I know it may seem silly right now, but to me, you are attempting to make yourself aware of answers you already possess at a much deeper level.

 

[Christina]

@vegasjon - Thanks for your insight. Good luck to you as well.

@Lmsdocjeff - All I was saying before is that when I am driving or in the shower, the outside noise is enough to drown out my T. I do feel relieved when I cannot hear it, but masking it all the time does seem to aggravate my H. I was expressing concern at what might happen if I could hear my T over everything and never get a break from it at all. The shower lasts anywhere from 10-20 minutes in the morning usually and then on my way to and from work---it's about 20-25 minutes there and back. It may be that it is still audible but I am preoccupied that I don't notice it as much; I'm not sure to be honest.

The strangest thing happened last night though. I was yawning and my jaw clicked very loudly, I'm pretty sure my entire jaw must have popped. Then, I checked my T in my right ear and it was completely gone. It was gone for about 5 minutes, which was absolutely wonderful. I do have TMJ, but not a severe case or anything. I've heard that tinnitus can be related to TMJ. I found it very curious. My left ear remained unchanged though, although the volume seemed less, but that might just because I was so thrilled that I had some sort of temporary silence in my right ear. What do you think? I might mention it to an ENT when I go there to see if things can be narrowed down further. I hope this means it might improve! Although, it is still too soon to tell.

 

[Lmsdocjeff]

I have had several patients who suffered from TMJ issues and also experienced T. Many experienced improvement in their T when they experienced improvement in their TMJ. How significant is stress I'm your life right now? I'm curious about the correlation between your stressors and your T.

 

[Christina]

@Lmsdocjeff - My job is fairly stressful usually. We are in slow season though, and once the busy season hits in the Spring, I will definitely be working overtime. Home life can be somewhat stressful, but I can usually block it out by going into my room and staying away from people. My friends understand that I have T but most of them have kids and sometimes, their kids can really drive my T way up. My dentist did tell me once that I grind my teeth and that it may be related to stress, but I figure everyone has stress right?

I was undergoing a period of high stress when I had my tinnitus onset because I was getting sick all the time and I was worried about everything. My doctor said it might have been related to my tonsillitis, but my tonsils are fine now and when the infection cleared, my T was still there. I'm not sure if this had any correlation. What do you think? My T does seem to spike whenever I eat anything with a lot of sugar/salt though. This is fairly common with T though, right? I read certain dietary things can trigger tinnitus. I try to stay away from sugar a lot since I'm diabetic, but I'm not sure what all I should avoid. I try to stay away from alcohol though.

 

[Christina]

Anyone have any advice on what earmuffs to buy? I bought a pair on amazon and tried to play music with them but it didn't help, my T spiked again. I am wondering if anyone else has bought any. I am desperate to get back to my music again if it's even possible. =/

 

[Lmsdocjeff]

Christina, I haven't had a chance to visit the forum the past couple of days and will be our for one more day. I was skimming through things today and saw your post. Please do not give up on your music! I'll share more in the next entry.

 

[Christina]

@Lmsdocjeff - Sorry it has taken me so long to respond to your message, it has been pretty hectic the past week or so. My boyfriend bought me these earmuffs that were supposed to block out sound fairly well, they were "given" a 34DB NRR Rating. Anyway, I tried these ear muffs with earplugs and dusted off my violin. I played and stopped about only 4-5 minutes in because my ears were throbbing and then I realized these stupid ear muffs weren't even working. I don't know if it's the quality or what because they were supposed to block out a lot of sound, which they obviously didn't.

Since that day, my tinnitus has gotten even worse, which has really discouraged me from playing at all. I can tell that I've lost so much in the last year in regard to my music especially when it comes to technique and even finger dexterity. I'm worried about even being able to practice for a long period of time. Not to mention in order to regain even a fraction of what I've lost as far as my ability is concerned, I would need to be practicing for a minimum of (2-3) hours a day. I don't know how I'm supposed to do my music when my hyperacusis and T get so hard to handle. Any thoughts on this? I'm really hurting right now.

 

[daniel1111]

@Christina They are quite expensive, but Yamaha do "Silent" violins. Aimed at not upsetting your neighbours, youlisten with headphones and I (suppose) can be played very quietly. You could go to a music shop and try one out.