One Year with Tinnitus and Hyperacusis

[Alyssa M]

Hello,
I am a 28 year old Mom of two young daughters. My journey with tinnitus started last summer when I was 6 months pregnant. The first symptom I noticed was that when I laid on my left side or occluded my left ear, I started to hear rushing wind. Over the past year I have seen multiple doctors, ENT, dentists, physiotherapists etc. The rushing noise has progressively become louder and happens more often. I have also been diagnosed with hyperacusis. The only noises that seem to really cause pain and discomfort are my kid's voices (can be crying, just talking, even my baby's coos). I guess I just want to introduce myself and feel like I'm not alone. It's hard to read threads of everyone's struggles, and battles with depression and suicide and not worry that I'll end up that way. I want to enjoy my girls as they grow, but at the moment all I feel is afraid.

For those with hyperacusis or tinnitus that reacts to noise, has it continually worsened over its course? Does it plateau eventually so I can stop fearing that it will get worse and try to learn to live with it? Any suggestions? Thank you.

 

[dpdx]

Did you take an ototoxic drug?
Were you exposed to any loud sounds? Concert? Club? Party?
Do/Did you use headphones/earbuds?
Did the tinnitus and hyperacusis appear before or after giving birth?
Do you have dizziness/vertigo?
Have you done an audiogram up to 20khz.
Have you done otoacoustic emissions test to see if you have damaged cochlea cells?

 

[glynis]

@Alyssa M ,
Tinnitus through pregnancy can happen and can settle over a year after birth as your hormones settle .
With Hyperacusis try noise reduction plugs and build up time around the sound .
White noise generators and counselling can help some people.
love glynis

 

[GregCA]

For those with hyperacusis or tinnitus that reacts to noise, has it continually worsened over its course?

Actually, hyperacusis often resolves on its own.

It would be helpful for you to try to find your root cause. What have you done in that regard?

 

[Alyssa M]

Did you take an ototoxic drug?
Were you exposed to any loud sounds? Concert? Club? Party?
Do/Dud you use headphones/earbuds?
Did the T and H appear before or after giving birth?
Do you have diziness/vertigo?
Have you done an audiogram up to 20khz.
Have you done otoacoustic emissions test to see if you have damaged cochlea cells?

No ototoxic drugs, no loud work environment or rock shows. I rarely use earphones and have always preferred lower volume when watching tv etc. T and H both showed up when I was 6 months pregnant and have continued to get worse. Not dizzy and no vertigo.
I'm not sure what an audiogram or otoacoustic emission test is.. I've had my hearing tested by three audiologist and it's been perfect every time.

 

[Alyssa M]

@Alyssa M ,
Tinnitus through pregnancy can happen and can settle over a year after birth as your hormones settle .
With Hyperacusis try noise reduction plugs and build up time around the sound .
White noise generators and counselling can help some people.
love glynis

Thanks Glynis. I am waiting for a referral from my doctor to go through to start counselling and I do sleep with a noise machine under my pillow. Helps a bit. I am breastfeeding still as well. Any thoughts on cases of T and H that have resolved well after giving birth/cessation of breastfeeding?

 

[Alyssa M]

Actually, hyperacusis often resolves on its own.

It would be helpful for you to try to find your root cause. What have you done in that regard?

Thanks, this is hopeful. Every forum I've read on hyperacusis seems to be very depressing and hopeless. I've seen several doctors who all say there is no cause, learn to live with it. Similar response from 2 ENTs. I have very bad TMJ issues, a physiotherapist and massage therapist were hopeful it might be related to that but it hasn't improved after several sessions with them. Everyone seems to think stress caused it. When it started I was 6 months pregnant with baby #2, starting my fourth (full time) year as a nursing student, attending placement, working, renovating a house and had two family deaths. You could say there was stress lol.... but I struggle to accept the fact that one day I was ok and the next day I had tinnitus and there is no cause.

 

[glynis]

@Alyssa M ,
It should settle after breastfeeding .
We have a few mums on here ,Try search box or start thread Tinnitus started during Pregnancy.
love glynis

 

[GregCA]

I struggle to accept the fact that one day I was ok and the next day I had tinnitus and there is no cause.

As you should, because there is a difference between not having a cause, and having a cause that we are not able to find.
There clearly is a cause, by general universal principles of causality (unless you believe in supernatural stuff and/or gods who can make things happen out of thin air), but your doctors just haven't been able to figure it out.

Have you undergone any systemic testing (blood panels, etc), and/or any imaging? (CT, MRI)

For Tinnitus, there is a flowchart you can follow (and work with your doctors to follow) to try to narrow it down: https://www.tinnitusresearch.net/index.php/for-clinicians/diagnostic-flowchart

 

[Alyssa M]

As you should, because there is a difference between not having a cause, and having a cause that we are not able to find.
There clearly is a cause, by general universal principles of causality (unless you believe in supernatural stuff and/or gods who can make things happen out of thin air), but your doctors just haven't been able to figure it out.

Have you undergone any systemic testing (blood panels, etc), and/or any imaging? (CT, MRI)

For Tinnitus, there is a flowchart you can follow (and work with your doctors to follow) to try to narrow it down: https://www.tinnitusresearch.net/index.php/for-clinicians/diagnostic-flowchart

My doctors have really been "wait and see" with everything. 2 different ENTs would not give me the time of day. The first spent about 5 minutes with me, said "it's called tinnitus, learn to live with it and call me if you get suicidal". Zero investigatone done. I finally convinced my doctor to put in a request for a CT so that is coming up soon. Any other thoughts? I tried Physio for my jaw for about a month, maybe try longer?

 

[GregCA]

My doctors have really been "wait and see" with everything. 2 different ENTs would not give me the time of day. The first spent about 5 minutes with me, said "it's called tinnitus, learn to live with it and call me if you get suicidal". Zero investigatone done. I finally convinced my doctor to put in a request for a CT so that is coming up soon. Any other thoughts? I tried Physio for my jaw for about a month, maybe try longer?

If it were me, I'd do a full blood panel, CT and MRI - and if none of these turn up anything, I'd bring the images (not the report) to at least 3 other doctors so they can provide their own readings. I say this as someone who has had to consult over half a dozen doctors before someone saw the problem on my CT images. That doctor specifically told me "bring me your CT images - and don't worry about the report - I just need the images", so I must not be the first one with a "clean report" who showed up at his doorstep asking for help.

 

[brownbear]

That doctor specifically told me "bring me your CT images - and don't worry about the report - I just need the images"

That sounds like a proper ENT doctor to me. Most ENTs worth their salt should be better able to read ENT imaging than radiologists. Sorry radiologists, but it's true.

 

[Contrast]

No ototoxic drugs, no loud work environment or rock shows. I rarely use earphones and have always preferred lower volume when watching tv etc. T and H both showed up when I was 6 months pregnant and have continued to get worse. Not dizzy and no vertigo.
I'm not sure what an audiogram or otoacoustic emission test is.. I've had my hearing tested by three audiologist and it's been perfect every time.

it's a common knowledge here standard audiograms are extremely inaccurate

I personally believe it's virtually impossible to have tinnitus and painful hyperacusis without some degree of hearing loss

 

[Alyssa M]

it's a common knowledge here standard audiograms are extremely inaccurate
View attachment 21899

I personally believe it's virtually impossible to have tinnitus and painful hyperacusis without some degree of hearing loss

I feel like I still have so much to learn. So are you saying that it is likely I have some hearing loss since I have tinnitus and hyperacusis, even though my standard hearing tests have been perfect? If so, would a hearing aid maybe help me deal with my pain and discomfort then?

 

[Contrast]

I feel like I still have so much to learn. So are you saying that it is likely I have some hearing loss since I have tinnitus and hyperacusis, even though my standard hearing tests have been perfect? If so, would a hearing aid maybe help me deal with my pain and discomfort then?

Hearings aids are literally just microphones/equalizers you put in your ear, they may help with tinnitus but not painful hyperacusis.

Research suggest painful hyperacusis is related to inner ear damage
https://www.ata.org/news/news/hyperacusis-related-damage-nerve-cells-inner-ear

 

[Contrast]

Get an extended audio gram that test for speech in background noise.

Ones that go above 8k, hearing loss can be genetic unfortunately.

 

[Alyssa M]

Hearings aids are literally just microphones/equalizers you put in your ear, they may help with tinnitus but not painful hyperacusis.

Research suggest painful hyperacusis is related to inner ear damage
https://www.ata.org/news/news/hyperacusis-related-damage-nerve-cells-inner-ear

Get an extended audio gram that test for speech in background noise.

Ones that go above 8k, hearing loss can be genetic unfortunately.

Where/how would I go about getting this test done?