Are Hyperacusis and Trigeminal Neuralgia Connected?

[NewLionel]

How common is it for hyperacusis patients to also have issues with the trigeminal nerve?

My hyperacusis and trigeminal neuralgia started at the same time. That nerve gives me pain constantly from sound to movement to lifting anything. My trigeminal nerve acts up and my ear gets blocked.

I'm going to the neurologist to get medication for the trigeminal neuralgia.

Has anyone had any success treating their trigeminal neuralgia and it providing relief for hyperacusis as well?

 

[Marin]

For me, my trigeminal symptoms started after I developed hyperacusis, and I believe they are connected.

Have your trigeminal symptoms improved or progressed since you developed hyperacusis? Sadly, mine seem to be getting worse as time goes on.

I'd like to hear what you end up being prescribed and if it works for you. I just tried Amitriptyline for the first time last night, and it made me so dizzy that I don't think I can continue to take it, sigh.

I hope you find something that works for you, and gives you relief!

 

[ShaunR]

Hi,

I think mine started straight after my acoustic shock. I can't say I'm sensitive to sound in loudness terms however sound makes my jaw and face ache badly... Not really my ear though; it did burn at the start but that's gone away thank God!

Still taking the Tegretol and actually had a reasonable pain free day today... can still feel the hearing loss but had no real pain. Knowing my luck that'll come tomorrow.

Shaun

 

[NewLionel]

Hi,

I think mine started straight after my acoustic shock. I can't say I'm sensitive to sound in loudness terms however sound makes my jaw and face ache badly... Not really my ear though; it did burn at the start but that's gone away thank God!

Still taking the Tegretol and actually had a reasonable pain free day today... can still feel the hearing loss but had no real pain. Knowing my luck that'll come tomorrow.

Shaun

I can't be sure but I think mine was from bad posture or lifting weights.
Is it just sound that affects it?
When you take the Tegretol can you listen to music without pain?

 

[ShaunR]

I can't be sure but I think mine was from bad posture or lifting weights.
Is it just sound that affects it?
When you take the Tegretol can you listen to music without pain?

Yes it's just sounds. I'm not sure which sounds yet however I have a feeling it's low frequency ie. rumbly car journeys etc. I've started plugging for these now.

I've been in such a state recently I haven't dared test it however we went to the circus tonight with music (I was plugged up) and I've come out OK.

Shaun.

 

[Lilah]

That nerve gives me pain constantly from sound to movement to lifting anything.

Where do you get the pain?

For me, my trigeminal symptoms started after I developed hyperacusis, and I believe they are connected.

What are your symptoms?

I think TTTS, hyperacusis, TMJ, TN present similar symptoms but I'm not sure if/how they are related. I've had a dull ear ache/burning sensation since I got tinnitus which I thought was hyperacusis-related, but recently I got a sharp ear ache and I'm wondering if it is trigeminal neuralgia, or some type of neuralgia. Usually I only had this pain with noise but then it stopped going away.

 

[NewLionel]

Yes it's just sounds. I'm not sure which sounds yet however I have a feeling it's low frequency ie. rumbly car journeys etc. I've started plugging for these now.

I've been in such a state recently I haven't dared test it however we went to the circus tonight with music (I was plugged up) and I've come out OK.

Shaun.

Good to here you are getting out .

Yeah low frequencies are ok for me it's more music and startling noises.

 

[NewLionel]

Where do you get the pain?

What are your symptoms?

I think TTTS, hyperacusis, TMJ, TN present similar symptoms but I'm not sure if/how they are related. I've had a dull ear ache/burning sensation since I got tinnitus which I thought was hyperacusis-related, but recently I got a sharp ear ache and I'm wondering if it is trigeminal neuralgia, or some type of neuralgia. Usually I only had this pain with noise but then it stopped going away.

The side of my head... basically the branches of the trigeminal nerve are constantly trouble. Then neck and shoulder/arm which came later. I think there is a nerve trapped somewhere but it's like the trigeminal nerve is just so sensitive to sound... any music with a beat the nerve starts acting up, and I start getting a toothache. If I get startled I feel it in the trigeminal nerve.

But yeah I get jaw pain, TTTS, dizziness... A nice mix of things! Ha ha.

I guess the trigeminal nerve is connected with the ear...

 

[Orions Pain]

I have trigeminal irritation as a result of hyperacusis. It baffles my mind how it can appear after noise trauma, but the trigeminal nerve controls the Tensor Tympani muscle, so there is clearly a connection to the ear.

I feel like some sort of middle ear dysfunction sets this nerve pain off - a different sort of "trigeminal neuralgia" than the classic version where a blood vessel compresses a nerve and causes pain.

 

[Marin]

The side of my head... basically the branches of the trigeminal nerve are constantly trouble. Then neck and shoulder/arm which came later. I think there is a nerve trapped somewhere but it's like the trigeminal nerve is just so sensitive to sound... any music with a beat the nerve starts acting up, and I start getting a toothache. If I get startled I feel it in the trigeminal nerve.

I get all of these symptoms, too. For me, mine will act up at the slightest sound with high frequency. Like papers it sheets rustling. It really makes me want to over protect, but I still can't decide if I should or not because then I'd be in muffs 24/7. I also can't listen to music or have the volume on for TV and it's been absolutely miserable. Oh, and even touching stuff with my hand can make it act up now. Not good.

@ShaunR I'm seriously impressed and super jealous that you went to the circus. I feel like I've become a prisoner in my own home. Are you experiencing any side effects from the medication?

@NewLionel I saw on another post that you felt like you had been overprotecting and making things worse. Now that you're trying to expose yourself to more stuff are the trigeminal symptoms getting better or worse?

 

[Marin]

Have any of you been brave enough to get an MRI? @NewLionel @ShaunR @Lilah @Orions Pain.

These symptoms are seriously making me consider getting one, but I'm terrified of the consequences. Plus, I'm not sure what the doctors could even do if they could see a damaged nerve?!

 

[Lilah]

Have any of you been brave enough to get an MRI? @NewLionel @ShaunR @Lilah @Orions Pain.

These symptoms are seriously making me consider getting one, but I'm terrified of the consequences. Plus, I'm not sure what the doctors could even do if they could see a damaged nerve?!

I did MRI and MRAs in early 2019 due to tinnitus (no findings) but this issue is more recent. I did not have hyperacusis/possible nerve issues when I first got tinnitus.

 

[Orions Pain]

Have any of you been brave enough to get an MRI? @NewLionel @ShaunR @Lilah @Orions Pain.

These symptoms are seriously making me consider getting one, but I'm terrified of the consequences. Plus, I'm not sure what the doctors could even do if they could see a damaged nerve?!

I had one. To my understanding MRIs don't show nerves at all, nor nerve damage. Even compressions are seldom seen on one. An MRA is more likely to show a compression (blood vessel pressing on a nerve). MRI is mostly rule out things like tumors, lesions, and things like herniated/slipped disks.

If you don't want an MRI and aren't opposed to medication, an "easy" way is to try anticonvulsant medications. If they alleviate your pain, then it's likely to be nerve related but these medications come with heavy side effects.

 

[ShaunR]

@Marin
No side effects from the meds yet besides that I can't ermmmm finish the deed of you get what I mean.

MRI is quite pointless in my opinion. I've had a few now and they've never shown a damn thing wrong. Unless they suspect you have an acoustic neuroma I'd suggest it's not worth the hassle... but that's only my opinion.

Yes I'm very lucky I can still get out but I have to be incredible careful or I suffer the consequences.

Shaun.

 

[NewLionel]

I had an MRI, wouldn't recommend it, found nothing.

Thinking I might be getting on those anticonvulsant meds soon, hopefully I get no side effects.

 

[NewLionel]

I have trigeminal irritation as a result of hyperacusis. It baffles my mind how it can appear after noise trauma, but the trigeminal nerve controls the Tensor Tympani muscle, so there is clearly a connection to the ear.

I feel like some sort of middle ear dysfunction sets this nerve pain off - a different sort of "trigeminal neuralgia" than the classic version where a blood vessel compresses a nerve and causes pain.

I didn't know the trigeminal nerve controls the TTM but it actually makes perfect sense in regard to my symptoms. Do any of the medications calm the trigeminal nerve down so that the ear stops getting affected? As I'm writing now the nerve is acting up and the TTM is getting affected. I wonder if it's a case of fix the nerve, fix the ear?

It doesn't seem possible that music could cause pain in the arm, it seems that the trigeminal nerve is the main culprit at work?

 

[Orions Pain]

I didn't know the trigeminal nerve controls the TTM but it actually makes perfect sense in regard to my symptoms. Do any of the medications calm the trigeminal nerve down so that the ear stops getting affected? As I'm writing now the nerve is acting up and the TTM is getting affected. I wonder if it's a case of fix the nerve, fix the ear?

It doesn't seem possible that music could cause pain in the arm, it seems that the trigeminal nerve is the main culprit at work?

My apologies, it actually innervates the TT muscle, I'm not sure if it actually "controls it, as I'm not 100% sure on what innervates means.

I've spoken to a few people who were helped with anti convulsants. I have a few types myself which like many I'm afraid to take for the side effects nerve meds don't actually repair the nerve, they mainly just disrupt the pain signal. If the nerve is irritated I can see how it can be taken temporarily to alleviate pain and help you get through, but it's not gonna regenerate the nerve or "heal" it in any way which is what sucks.

You have arm pain from music?

 

[NewLionel]

My apologies, it actually innervates the TT muscle, I'm not sure if it actually "controls it, as I'm not 100% sure on what innervates means.

I've spoken to a few people who were helped with anti convulsants. I have a few types myself which like many I'm afraid to take for the side effects nerve meds don't actually repair the nerve, they mainly just disrupt the pain signal. If the nerve is irritated I can see how it can be taken temporarily to alleviate pain and help you get through, but it's not gonna regenerate the nerve or "heal" it in any way which is what sucks.

You have arm pain from music?

If the drug works, you have successfully diagnosed that's the problem and you can look at other options then. Also a break from this pain would be nice.

Yeah It feels like when the trigeminal is activated, the pain travels down the shoulder/arm, I don't really understand why.

 

[Orions Pain]

If the drug works, you have successfully diagnosed that's the problem and you can look at other options then. Also a break from this pain would be nice.

Yeah It feels like when the trigeminal is activated, the pain travels down the shoulder/arm, I don't really understand why.

I'm stuck in a loop of wanting the pain to stop vs thinking I can tolerate it and not risk tinnitus & hyperacusis getting worse. Aww and I'm so sorry to hear. That's very strange! I've heard of people having nerve neck pain but not arm pain. The nerves are very complicated though so perhaps they're communicating and you're getting referred pain/central sensitization. I'm so sorry you also have to deal with this stuff it's such a nightmare.

 

[ShaunR]

Hi,

I get the shoulder pain too... I always thought it was an old injury playing up but looks like it's all tied into TN.

Shaun

 

[David Vance]

I have trigeminal irritation as a result of hyperacusis. It baffles my mind how it can appear after noise trauma, but the trigeminal nerve controls the Tensor Tympani muscle, so there is clearly a connection to the ear.

I feel like some sort of middle ear dysfunction sets this nerve pain off - a different sort of "trigeminal neuralgia" than the classic version where a blood vessel compresses a nerve and causes pain.

I also developed face pain - TMJ - Trigeminal neuralgia a bit after developing hyperacusis. Sounds make my face and whole head hurt, it's insane! Vibration sounds are the worst, from ceilings above. Nothing seems to help it other than Ativan, and sometimes Naratriptan. But don't want to be on those meds for a long time. I think it's a matter of just getting into the quiet. I also have occipital problems and headaches from that too.

 

[Orions Pain]

@NewLionel did you ever get around to trying any medication for the trigeminal pain?

 

[aeverhart139]

Wow I finally found people like me! Too much pain to type but will leave comments when I can.

 

[NewLionel]

@NewLionel did you ever get around to trying any medication for the trigeminal pain?

I have my neurologist appointment in January, I will let you know then.

 

[florian_89]

Hi,

I just want to share my point of view. Since my acoustic shock, my left inner ear got injured and my TTM is always controlled to be in the pulling state.

I have a theory:

The trigeminal nerve is overwhelmed by signals coming from the damaged inner ear. The inflammation, which is caused by sound, which is in the end nothing else as a chemical cocktail is somehow pushed to the trigeminal nerve and causes unwanted movements and a pain like feeling in the nerve endings.

My story - an "interesting" connection
2 years ago after my acoustic shock in the left ear, I underwent a massage treatment, which had a good and bad outcome.

Since that therapy my tongue is pulling to one side, depending how much noise is consumed.
I can somehow release the energy, which is brought by the chemical cocktail from the ear, into a rapid movement.
This goes on and on and is pretty painful.
The "good" thing is that my ear feels not so tensed - instead the pain is shifted - still noise hurts.

For me this is evidence, that the chemical cocktail called "inflammation", is responsible for the unwanted movements in the trigeminal nerve in whatever way.

I also think that once the inner ear won't produce this chemical cocktail, the trigeminal nerve will be free of pain, since the source of the pain can't trigger it.

What do you think?

 

[weab00]

Hi,

I just want to share my point of view. Since my acoustic shock, my left inner ear got injured and my TTM is always controlled to be in the pulling state.

I have a theory:

The trigeminal nerve is overwhelmed by signals coming from the damaged inner ear. The inflammation, which is caused by sound, which is in the end nothing else as a chemical cocktail is somehow pushed to the trigeminal nerve and causes unwanted movements and a pain like feeling in the nerve endings.

My story - an "interesting" connection
2 years ago after my acoustic shock in the left ear, I underwent a massage treatment, which had a good and bad outcome.

Since that therapy my tongue is pulling to one side, depending how much noise is consumed.
I can somehow release the energy, which is brought by the chemical cocktail from the ear, into a rapid movement.
This goes on and on and is pretty painful.
The "good" thing is that my ear feels not so tensed - instead the pain is shifted - still noise hurts.

For me this is evidence, that the chemical cocktail called "inflammation", is responsible for the unwanted movements in the trigeminal nerve in whatever way.

I also think that once the inner ear won't produce this chemical cocktail, the trigeminal nerve will be free of pain, since the source of the pain can't trigger it.

What do you think?

I would hope it's inflammation, since we'd see good results from SPI-1005.

 

[Juan]

I'm going to the neurologist to get medication for the trigeminal neuralgia.

How do you know you have trigeminal neuralgia? Which tests did you do? How was it diagnosed?

 

[NewLionel]

How do you know you have trigeminal neuralgia? Which tests did you do? How was it diagnosed?

I wouldn't fit the classic case of neuralgia, but it's the trigeminal nerve that is giving me trouble. Tooth, eye, side of the head... I have been to dentists, ENTs... loads of doctors/specialists... mostly had to read up/educate myself to figure out what is going on. Maybe I will get some relief by calming the nerve down with medication.

 

[Juan]

I wouldn't fit the classic case of neuralgia, but it's the trigeminal nerve that is giving me trouble. Tooth, eye, side of the head... I have been to dentists, ENTs... loads of doctors/specialists... mostly had to read up/educate myself to figure out what is going on. Maybe I will get some relief by calming the nerve down with medication.

What medication are you having, or looking at for trigeminal neuralgia?

 

[NewLionel]

What medication are you having, or looking at for trigeminal neuralgia?

Pregabalin, for some it works well, for some it does nothing. I am hopeful...

Appointment in January.