Tinnitus Makes Me Disabled and Doctors Don't Take Me Seriously

[Derek26]

I've been suffering with tinnitus since 2010 but I was able to cope.

In 2017 I made the stupid mistake of going to a beer garden and I've been going downhill since. Any loud noise makes it permanently worse, and since last summer I've had hearing loss in both ears.

I've missed so much work. I'm disabled. I have to continually start from scratch when the noise gets louder and higher pitched. I can't get disability which is really fucked up! My doctors don't listen and say I have mental health problems, that I need to see a psychiatrist, be medicated and that my reaction to the noises is not normal? My ENT told me that it's genetic and that mufflers, motor bikes and other noises can't make it worse unless it's a jackhammer or airplane. She told me it's anxiety making it worse - but it's not.

I fear noises now and struggle with hyperacusis, it's god awful. The crippling anxiety and fear and knowing that I will lose my hearing and these noises will get worse. It's so high pitched I get tears on the side of my eyes from the piercing pitch. When I talk it's sensitive and driving with windows up the motorbikes gets right into my ears. I've had enough for this. I told my ENT to get me a doctor who actually listens to their patients and to get re-educated on tinnitus and how it works.

It's so hard to habituate when it keeps on getting worse. The things I enjoyed are gone. I can't read a book, fall asleep on my own without 2 pills of Zopiclone and Ativan. Doctors are pushing me to get on antidepressants but the noise is still there.

My ENT sent a letter to disability stating that I have mental health issues and have an extreme reaction to a common condition. Like that's going to help me.

Having been exposed to noise exposure in February, it's just been getting worse and with summer here now and the car exhausts revving up it's just awful. I can't go outside anymore and the doctors tell me not to wear earplugs and that I can't stop living, lol. They are so stupid and it's of no surprise to me that people can't get help and no work is being done to help this. They say I have mental health problems and should not be so affected by this.

That's my rant on this tinnitus bullshit for the day.

 

[AliasM]

Yes. I wrote a whole thread on how the accepted academic dogma around tinnitus is abusive. I honestly feel like the relationship I have had with doctors and audiologists since this began has been like being in an abusive relationship. Them telling me that my lived experience isn't real, and audiologists speaking down to me with CBT and TRT trickery as though I'm stupid e.g it's just like a fridge motor that we can ignore, it is only loud because you're stressed, there is not such thing as mild and severe tinnitus, only your perception of it, hyperacusis is the product of anxiety. Then yes... they start telling you that you're just depressed.

We are completely on our own.

 

[NTV]

I am sorry your doctors treated you this way. I feel like doctors who say these kinds of things never experienced tinnitus themselves.

 

[Matchbox]

Just so you know you sound a bit like me.

I think the benzos are making any volume reduction your brain may normally do impossible.

Zopiclone was a double edged sword as it helped but also gave me new noises in the end.

I'm surprised steroids weren't offered to you. If it is ringing and not distortion they should markedly help. Taper very slowly off and only do the course once or twice.

 

[Óscar PP]

ENTs are lobotomized by the Jastreboff and coping industry bullshit that all tinnitus are the same and hence if most people habituate and you don't, then the problem must be your reaction to your tinnitus, which is utter nonsense.

 

[Marcuso22]

I'm from Canada as well. Have you seen an audiologist? Preferably someone who is experienced in treating tinnitus or has TRT training. There is no doubt stress, & anxiety will make one's tinnitus worse. So it's important to get counselling from someone in cognitive behavioral therapy. Dr. Bruce Hubbard is someone who has tinnitus & does online counselling. You should at least watch his webinar on YouTube. There are many people who get approved for disability just based on their mental illness or deep depression. Not saying that's your case, but just letting you know that. You may be entitled to CPP disability as well. An MRI or CT Scan can rule out serious pathological issue's such as tumors or circulation problem. Most cases it's not & it could be from ototoxic drugs or from cumulative effect of being exposed to loud noise where you didn't have ear protection.

I have severe reactive tinnitus & some lowered sound tolerance as well as reaction to certain external noises, appliances & fridge compressor. If someone's never had this they would have a hard time understanding. That's something that we have to come to terms with as well otherwise it will create more anxiety hence worsen our tinnitus. Once you're able to rule out your worst fears you will start to feel some relief.

 

[Rinz]

I know exactly how you feel. I had unilateral high pitched tinnitus for about 20+ years now and I was able to habituate to it. However, for me, since 2 months I developed a low frequency pulsating hum as well as reactivity to sounds. If there is something on TV or if my kids scream a bit I hear a loud "zoomzoomzoomzoom" over it and constant pulsating noise whole day.

The thing which I completely understand about your story is the despair and the fear that the things you enjoyed are gone. I can't do anything, cannot think about the future, every day is a struggle. I am exactly in the same place as you are.

What helps me, or what I am trying to do, is to put my mind of it and to realize bad feelings about it do not help at all. Some days are okay, but many days are not (like today, that's why I am on this site).

I also compare my "past life" (before 2 months ago) with the life I have now... this is also a mistake (but understandable)... like you said "I used to be able to enjoy books" and not anymore. Same here, I do that too like: "Oh, I cannot go anywhere anymore. I am afraid to buy a new house. etc.". But, this kind of thinking only makes things worse. These days I sometimes do things which I never did before which seem to relax me (as I have something to do -> a goal), like working in the garden or cleaning up the shed or basement.

 

[Stacken77]

Hey man, very sorry to hear that. I'm having a very hard time as well, so I know what you're going through. I have some questions, if you don't mind.

What kind of noise makes it worse? Is it exclusively "loud noise"? Do car rides, you talking or conversations also make you worse?

Do you know what caused your hyperacusis? Did it develop after loud noise exposure?

How big is your hearing loss? Do you have more hearing loss on an audiogram than what's expected for your age? Or do you just have hearing loss? For example; I have a measurable dip in both ears around 4-6 kHz, but it's not low enough to be considered "hearing loss" for my age.

What kind of noise were you exposed to in Februry?

I would take what a doctor says with a grain of salt. We ought not to ware earplugs 24/7 as that do makes us more sensitive to sound in the long run, but wearing earplugs when outside, even wearing double protection when outside should not be a problem and will probably help you in this trying time.

Have you taken any medications recently that have worsened your tinnitus?

I'm very sorry, and I have loads of sympathy for you as I'm in a similar position. If you protect your hearing while also getting some sound exposure which you can handle, I believe your state could turn around. I know it's insanely hard to handle, but we have no other choice but trying.

Wish you well,
Stacken

 

[Derek26]

@NTV, I asked her if she had it and she said no, so I told her not tell me how I should be feeling and functioning. She told me my reaction to it is not normal and there must be some deeper issues lol.

 

[Derek26]

@Matchbox, yes, I tried tapering the Ativan. It took about 2 months to just reduce from 1 mg to .5mg but then the tinnitus got worse so I went back up to 1 mg.

I told my ENT last week that I wanted to take another round of Prednisone because my tinnitus has been getting worse since February but she wasn't sure about it because the round I took last year did not help.

Anyways, I got a prescription for it but I just got my COVID-19 shot last Tuesday and the pharmacist said I can't take steroids after the vaccine because it will reduce the efficacy of it. So I have to wait one more week but am afraid this damage will become permanent waiting so long. It should have been given to me in February when I started calling her office and let the secretary know it was getting worse. I had a hearing test in March proving it, but she still did not contact me. I had to tell the secretary I wanted an appointment and she said that she wasn't concerned with mild hearing loss.

 

[Peter61]

Hey Derek,

Tinnitus is a cross we all have to bear in this online community, and just like the rest of us you will find a way and deal with it. But it's tough. Tinnitus is the most underestimated affliction in the world because it's invisible. You can look just fine but feel like a total wreck. People say: O, you can live up to 100 with it and it doesn't hurt you. That's very frustrating. What gives me hope though is that FIVE biotech companies are dedicating all their effort and energy to developing a cure. Just check out frequencytx.com, otonomy.com, decibeltx.com, rinri-therapeutics.com and soundpharma.com. In other words: Help is on its way. We just have to be patient and in the meantime make the best of it. Try to enjoy your life a little despite the buzzing and ringing and try to ban negative energy from your life, because if you let negativity take over (and that's a choice you make) those days, weeks, months, years will be lost. It'll be wasted time, and life is already so short, so try to enjoy it as much as possible, don't let tinnitus drag you down. It's just not worth it. Try to smile and live your life to the full, knowing tinnitus will only be a temporary thing.

 

[Exit]

If you need disability, then the "reaction" you have can be classified as psychiatric disorder and that can give you disability after a long fight with social welfare systems.

You just gotta play insane enough.

 

[Mary97]

Hey Derek, you remind me of myself. You're the only person on here I've seen make several mentions of tailpipe, engine car, motorcycle noise. It absolutely is what sets me off and we have tons of these vehicles around here! It makes me so miserable, scared and angry. I agree with @Exit. Of course it would much preferable to get your disability for the actual cause, auditory, but if you can get it for psych reasons then do it! Play the game to make your life easier... God knows, and we all know it gives you no joy to have to pursue this route. You'd give anything to have your old ears back... hugs to you.

 

[Exit]

Loud engines, construction work and exhaust pipes, especially dirt bikes, and modified cars are lethal to our compromised ears. Easy 100- 120 dB blasts just by walking through a city for 20 minutes. But if doctors told us to just stay inside, they would be on the first page of newspapers.

I've played the psych card many times, if doctors refuse something, they often turn around if you emphasize the mental aspect of their original treatment procedures.

Also I'm half disabled because of over a decade of autoimmune disease. I have 200 pages worth of medical records and even I needed to play a little psychic to get the disability.

The process took around 5 years. It is very important to study the process and what exact words the welfare system expect you and your doctors to emphasize. It's that stupid, they need to see the right words on the papers to grant you stuff.

I recommend getting a few hours of help from lawyers specialised into the welfare system, to help you start the process.

 

[Derek26]

I want to talk about the experiences I had when all this started. Doctors look at me like I'm crazy and blame everything on anxiety.

I went to the ER when I found my tinnitus unmanageable in the beginning. The doctor told me that there was nothing wrong with my ears and that anxiety was the issue. I told him I wasn't leaving until I got help and saw a hearing specialist and he threatened to call security and have me removed from the hospital shouting at me. I went to the nurses' station and asked to be seen by another physician and that his behavior was unacceptable. She said nothing. So I filed a formal complaint against him.

My ENT told me to get on with it and that her clients that have it are happy as clams and don't complain about it. That I need psychiatric drugs and psychological help. She told me she has hearing loss and it doesn't bother her. I asked her if she had tinnitus and hyperacusis and she said no. I told her to stop comparing me to other people. She told me I'm her only patient who is severely impacted by tinnitus and that being so badly impacted is not normal. She told me her other clients don't notice it until she asks them if they can hear it. She tells me to ignore it and asks me why I can't work while her other patients can work?

 

[cruise]

I too went to the ENT and he was not able to help me. All I got was "your brain will adapt and with time will filter out the tinnitus". I have never read any stories about an ENT solving tinnitus problems. I agree, in my opinion they have no clue about how to treat the anxiety and stress reaction to tinnitus.

 

[dan]

I've been suffering with tinnitus since 2010 but I was able to cope.

In 2017 I made the stupid mistake of going to a beer garden and I've been going downhill since. Any loud noise makes it permanently worse, and since last summer I've had hearing loss in both ears.

I've missed so much work. I'm disabled. I have to continually start from scratch when the noise gets louder and higher pitched. I can't get disability which is really fucked up! My doctors don't listen and say I have mental health problems, that I need to see a psychiatrist, be medicated and that my reaction to the noises is not normal? My ENT told me that it's genetic and that mufflers, motor bikes and other noises can't make it worse unless it's a jackhammer or airplane. She told me it's anxiety making it worse - but it's not.

I fear noises now and struggle with hyperacusis, it's god awful. The crippling anxiety and fear and knowing that I will lose my hearing and these noises will get worse. It's so high pitched I get tears on the side of my eyes from the piercing pitch. When I talk it's sensitive and driving with windows up the motorbikes gets right into my ears. I've had enough for this. I told my ENT to get me a doctor who actually listens to their patients and to get re-educated on tinnitus and how it works.

It's so hard to habituate when it keeps on getting worse. The things I enjoyed are gone. I can't read a book, fall asleep on my own without 2 pills of Zopiclone and Ativan. Doctors are pushing me to get on antidepressants but the noise is still there.

My ENT sent a letter to disability stating that I have mental health issues and have an extreme reaction to a common condition. Like that's going to help me.

Having been exposed to noise exposure in February, it's just been getting worse and with summer here now and the car exhausts revving up it's just awful. I can't go outside anymore and the doctors tell me not to wear earplugs and that I can't stop living, lol. They are so stupid and it's of no surprise to me that people can't get help and no work is being done to help this. They say I have mental health problems and should not be so affected by this.

That's my rant on this tinnitus bullshit for the day.

I hear you brother, whereabouts in Canada are you?

 

[Derek26]

@dan, I'm in New Brunswick.

 

[pleasejuststop]

I have also heard these statements from people, including doctors and ENTs, and it's infuriating. There is no solution, so I have heard people say I am having an extreme reaction and they have blamed it on psychiatric issues I already had. The tinnitus made my psychiatric issues worse and gave me new psychiatric issues.

It's as if a doctor diagnosed a koala clinging to the remains of a tree after a forest fire with a "mental health problem." The koala has the mental health problems from the ongoing trauma!

I am so frustrated. It's just relieving to hear someone else has heard these same statements, because I feel like I am going crazy. I cannot handle it not being acknowledged, or dismissed, by so many people. It's so frustrating. The fact that some people, even professionals in a psych ward, have said to me that tinnitus is no big deal, and that I am overreacting, makes me enraged. I had a doctor once tell me that he had temporary tinnitus, just for a couple minutes sporadically, and he wanted to gouge his ears out. If he says that, then how am I supposed to live with it at this age? I believe in you completely. Can you get a lawyer for the disability process? And I'm disturbed that you had a permanent worsening from the beer garden. I am so terrified of my tinnitus becoming even louder than it is because I decide I just want to do something normal one day. How am I supposed to just cope with a constant loud ringing in my ears that worsens because of something like that at any moment? It is unbearable, and so many people don't understand it. I can't sleep without Eszopiclone and Klonopin and Seroquel. I have had to take double the maximum dose of Eszopiclone just to get to sleep.

 

[Derek26]

@pleasejuststop, I'm so sorry to hear you are struggling the same. Yes I've heard all those lines from doctors too. Many people live with it, how come they can work and you can't, noises shouldn't make it worse unless its over 85 dB for hours at a time, you have an anxiety disorder lol. And it's really hard to get use to it when it keeps on changing, getting louder causing more complications.

You are NOT crazy. These noises are maddening.

I could get a lawyer but my application is now in appeals and this dumb dumb doctor now says he will have a letter for me by the end of this week. Will see. And I think it's crazy you would have to spend thousands of dollars to get a lawyer to get on disability I'm already exhausted enough. My hearing tests show hearing loss and they still blame it on anxiety and mental health issues it's just so awful.

People who say that tinnitus shouldn't get worse or that it can't get worse are dead wrong. I'm living proof of it. I hear ya! Not even being able to go outside and wonder what will and will not make it worse, what's too loud, noise that is out of your control just adds another layer to the problem.

 

[AliasM]

@NTV, I asked her if she had it and she said no, so I told her not tell me how I should be feeling and functioning. She told me my reaction to it is not normal and there must be some deeper issues lol.

Such blatant gaslighting. The noises in my head are straight from hell. It has completely ruined my life. These people wouldn't last 5 minutes. Yes though, it isn't the noise that is the problem, it is our reaction to it that is the issue. That is literally the TRT (Tinnitus Retraining Therapy) script.

 

[Gabriel5050]

One ENT told me that I should go on a beach holiday since it's summer and just forget about the tinnitus. Later on he told me there might be a cure for tinnitus on Mars. Just taking the piss at that point. For what other illnesses do doctors just make fun of your suffering?

 

[David59]

I went biking in the city, and got a spike due to the noises of the city (previously this wasn't an issue). Right now my level of ringing is livable but really worried it's going to get worse and I'm almost afraid to leave the house. Plan to low key it for a few weeks and hoping it gets better.

 

[DaveFromChicago]

To Gabriel5050:

In January of 2020 I asked my ENT Doctor when any even minimally effective treatment/drug might be available, and he shouted "in about 100 years" and left the room.

In 2015 another ENT Doctor actually said, "what do you expect? It's only 15 years into the New 21st Century."

These sorts of unconscionably glib, infuriatingly insensitive remarks from ENT Doctors are all too commonly reported on Tinnitus Talk.

My only theory about this lies in the fact that Doctors (at least in the USA) are regarded as near-Demigods.

Such remarks are just rationalizations for their admissions of utter inutility; if finding a treatment for this will always be beyond the realm of the possible, then it is not their fault (and therefore not indicative of their less-than-Godlike status).

What has baffled me is their complete lack of interest in following up with any of the treatments/drugs reported on Tinnitus Talk, or in asking a single question about the nature or etiology of my tinnitus.

Can you believe that (with the exception of hearing aids) a visit to an ENT Doctor in 2021 yields no further information about advances in treatment than such a visit 61 years before (in 1960) would have?

This is the only medical condition I have encountered wherein this is so sadly a fact.

 

[Exit]

Well I hope every ENT that ever bullied us to pay for their Mercedes gets horrible tinnitus...

If so happens, I'd say it's almost worth it if I have to suffer for the rest of my life too!

I've had 3 ENTs. #1 was an asshole who mocked me. #2 was nice, but wanted to TRT my brains out. #3 was very arrogant and almost wanted to cut my ear open on the first visit. He treated me nice enough but I think he suffered something psychological

 

[PeteJ]

Anyone on here get Disability?

 

[Brian P]

Hey man, very sorry to hear that. I'm having a very hard time as well, so I know what you're going through. I have some questions, if you don't mind.

What kind of noise makes it worse? Is it exclusively "loud noise"? Do car rides, you talking or conversations also make you worse?

Do you know what caused your hyperacusis? Did it develop after loud noise exposure?

How big is your hearing loss? Do you have more hearing loss on an audiogram than what's expected for your age? Or do you just have hearing loss? For example; I have a measurable dip in both ears around 4-6 kHz, but it's not low enough to be considered "hearing loss" for my age.

What kind of noise were you exposed to in Februry?

I would take what a doctor says with a grain of salt. We ought not to ware earplugs 24/7 as that do makes us more sensitive to sound in the long run, but wearing earplugs when outside, even wearing double protection when outside should not be a problem and will probably help you in this trying time.

Have you taken any medications recently that have worsened your tinnitus?

I'm very sorry, and I have loads of sympathy for you as I'm in a similar position. If you protect your hearing while also getting some sound exposure which you can handle, I believe your state could turn around. I know it's insanely hard to handle, but we have no other choice but trying.

Wish you well,
Stacken

What does your loss measure in decibels?

 

[Stacken77]

What does your loss measure in decibels?

If you ask me, according to my ENT, I have great hearing for my age. I don't have the specifics, but I believe there's a -10 dB dip around 4-6 kHz in my left ear, but not in my right. This dip is very audible when I listen with respective ear to different surroundings. It may also explain why my left ear tinnitus is louder than the right. I have not done an extended audiogram though.

 

[Matchbox]

What does your loss measure in decibels?

What kind of sounds do you hear when you wake up in bed usually?

 

[Juan]

In January of 2020 I asked my ENT Doctor when any even minimally effective treatment/drug might be available, and he shouted "in about 100 years" and left the room.

That's very rude but maybe realistic.

I lost all hope for a cure, to be honest. I just go to the ENT to check how my hearing is on an audiogram and see if there is wax or anything very obvious... like routine checks.