New to Pain Hyperacusis After a Loud Bar — What Do I Do?

[slimsanghvi]

Hi all -- two weeks ago I was at a loud bar for a couple hours. Afterward I have been feeling pain and/or fullness in my ears (started all in right, now in both), as well as radiating facial pain, slight sensitivity of ear to touch, and dizziness. Symptoms vary at any moment but I am never normal. No tinnitus (yet). I don't feel the pain is really that correlated to noise and as of yet it doesn't seem like ordinary sounds are "loud" for me. ENT put me on 10-days' prednisone (though I started 8 days after the event), and then I had an audiogram which was normal. I'm going to the Jastreboff clinic this Thursday.

Interested in any and all thoughts on what I should do next or what I should not do:
--On Jastreboff, I have my concerns about whether it is right for me given my symptoms but I'm willing to pay to hear him out. But are there tests he does that I should be careful about? During my audiogram they did an acoustic reflex test which I learned exacerbates some people's symptoms.

--I've heard some people talk about hyperbaric oxygen therapy and low-light laser therapy. Any thoughts on it for pain hyperacusis? I'm willing to pay to try anything but I don't know if any of these things have risks to make things worse?

--My ENT is basically useless as I have learned will be the case. But are there clinicians out there seeing patients (outside of the Jastreboff/TRT world) that I should try to go to? I split between DC/NY but would travel to at least talk to anyone who is focused on pain hyperacusis and/or pain management.

--Are there any drugs people have found they can take to help with pain that don't carry big ototoxicity concerns? I don't want to give myself tinnitus but this pain is quite challenging.

--Any other "do's" or "don'ts"?

I really appreciate any help any might provide. The last couple weeks have been really scary and I am very appreciative there are communities out here like this when so few doctors are able to say anything of value.

-Saurabh

 

[Jaysterk]

Bump.

 

[Daniel Lion]

Hi all -- two weeks ago I was at a loud bar for a couple hours. Afterward I have been feeling pain and/or fullness in my ears (started all in right, now in both), as well as radiating facial pain, slight sensitivity of ear to touch, and dizziness. Symptoms vary at any moment but I am never normal. No tinnitus (yet). I don't feel the pain is really that correlated to noise and as of yet it doesn't seem like ordinary sounds are "loud" for me. ENT put me on 10-days' prednisone (though I started 8 days after the event), and then I had an audiogram which was normal. I'm going to the Jastreboff clinic this Thursday.

Interested in any and all thoughts on what I should do next or what I should not do:
--On Jastreboff, I have my concerns about whether it is right for me given my symptoms but I'm willing to pay to hear him out. But are there tests he does that I should be careful about? During my audiogram they did an acoustic reflex test which I learned exacerbates some people's symptoms.

--I've heard some people talk about hyperbaric oxygen therapy and low-light laser therapy. Any thoughts on it for pain hyperacusis? I'm willing to pay to try anything but I don't know if any of these things have risks to make things worse?

--My ENT is basically useless as I have learned will be the case. But are there clinicians out there seeing patients (outside of the Jastreboff/TRT world) that I should try to go to? I split between DC/NY but would travel to at least talk to anyone who is focused on pain hyperacusis and/or pain management.

--Are there any drugs people have found they can take to help with pain that don't carry big ototoxicity concerns? I don't want to give myself tinnitus but this pain is quite challenging.

--Any other "do's" or "don'ts"?

I really appreciate any help any might provide. The last couple weeks have been really scary and I am very appreciative there are communities out here like this when so few doctors are able to say anything of value.

-Saurabh

Hi, welcome.
In my humble opinion... feel free not to take any advice...

Don't go to bars or expose yourself to loud noise, music, power tools etc... for a long time, possibly forever.
Don't do TRT or subject your ears to more noise.
Don't let an audiologist perform pressure tests or anything dangerous, tell them you have hyperacusis.
Let your inner ear heal with quiet.
Eat well. Exercise.
Count yourself lucky you don't have tinnitus and in time your hyperacusis and pain from it should go.
Daniel

 

[Contrast]

audiogram which was normal. I

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5438769/

I'm going to the Jastreboff clinic this Thursday.

https://web.archive.org/web/2015090...rd-in-Understanding-Hyperacusis-with-Pain.htm

(outside of the Jastreboff/TRT world)

Science as a whole has a 19th-20th century wave of elite psychologist ruining everything, it's not just ear problems. The truth is out there for people who want to find it.

 

[Contrast]

Professor Jastreboff is idolized in the clinical world, (by whoever funds it) but not so much the patients.

 

[Horrorpopz]

Oh @Contrast, it's a pleasure to see people like you here.

Thanks for spreading the truth around.

It's time to people stop blinding defending outdated stuff and accept what research is showing us, it breaks my heart that the huge majority of MD's still believe in that outdated crap, neglecting and worsening sufferers of such horrible, crippling and devastation conditions :/

 

[slimsanghvi]

Thanks so much for all the thoughts. @Daniel Lion -- your words helped me get to sleep peacefully last night

Can you be more specific about what tests I shouldn't do? I don't know what "pressure" tests are. When I go to Jastreboff I know they are going to want to test my LDLs. Have people had bad experiences from that testing?

 

[Contrast]

Oh @Contrast, it's a pleasure to see people like you here.

Thanks for spreading the truth around.

It's time to people stop blinding defending outdated stuff and accept what research is showing us, it breaks my heart that the huge majority of MD's still believe in that outdated crap, neglecting and worsening sufferers of such horrible, crippling and devastation conditions :/

no one gives it a second thought. It's just taught and accepted at face value.

 

[Juan]

Hi all -- two weeks ago I was at a loud bar for a couple hours. Afterward I have been feeling pain and/or fullness in my ears (started all in right, now in both), as well as radiating facial pain, slight sensitivity of ear to touch, and dizziness. Symptoms vary at any moment but I am never normal. No tinnitus (yet). I don't feel the pain is really that correlated to noise and as of yet it doesn't seem like ordinary sounds are "loud" for me. ENT put me on 10-days' prednisone (though I started 8 days after the event), and then I had an audiogram which was normal. I'm going to the Jastreboff clinic this Thursday.

Interested in any and all thoughts on what I should do next or what I should not do:
--On Jastreboff, I have my concerns about whether it is right for me given my symptoms but I'm willing to pay to hear him out. But are there tests he does that I should be careful about? During my audiogram they did an acoustic reflex test which I learned exacerbates some people's symptoms.

--I've heard some people talk about hyperbaric oxygen therapy and low-light laser therapy. Any thoughts on it for pain hyperacusis? I'm willing to pay to try anything but I don't know if any of these things have risks to make things worse?

--My ENT is basically useless as I have learned will be the case. But are there clinicians out there seeing patients (outside of the Jastreboff/TRT world) that I should try to go to? I split between DC/NY but would travel to at least talk to anyone who is focused on pain hyperacusis and/or pain management.

--Are there any drugs people have found they can take to help with pain that don't carry big ototoxicity concerns? I don't want to give myself tinnitus but this pain is quite challenging.

--Any other "do's" or "don'ts"?

I really appreciate any help any might provide. The last couple weeks have been really scary and I am very appreciative there are communities out here like this when so few doctors are able to say anything of value.

-Saurabh

I think Jastreboff and doctors in general will be useless, as you have noise-induced hyperacusis, which can mean cochlear damage.

I have tried Prednisone, both short (15 days) and long courses (1 month), and it never did anything. The long course actually made me feel very nervous and I couldn't sleep well, pretty awful, and did nothing for my hearing.

For me another corticosteroid that works better is Deflazacort, that is less strong than prednisone. I used to have 30 mg (1 pill) per day at breakfast time for 7 to 10 days. It did something, although you cannot expect miracles.

Try to avoid loud noise and give it time. Try to eat healthy and exercise.

There isn't much more to advise, in general terms... and I believe no doctor will give you solid advice or any drug that works for this.

 

[slimsanghvi]

Thanks all