Trigeminal Neuralgia?

[Orions Pain]

Check this

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5562182/

I think this is a case report where someone developed this after an acoustic trauma.

I've seen this before but thank you! Mine is weird because I didn't really have a terrible accident or anything (noise wise) and my nerve stuff appeared several months after tinnitus & hyperacusis.

There is definitely some sort of link tho.

 

[serendipity1996]

I've seen this before but thank you! Mine is weird because I didn't really have a terrible accident or anything (noise wise) and my nerve stuff appeared several months after tinnitus & hyperacusis.

There is definitely some sort of link tho.

Me too this facial/trigeminal stuff wasn't really an immediate issue. I had predominantly ear fullness/pressure and pain but after a few months that's gone away only to be replaced by this.

I'm actually unnerved by how the majority of medical practitioners seem completely unfamiliar with the concept of noise-induced pain. Makes me feel like a medical anomaly like some kind of sick joke.

 

[Greg Sacramento]

I think this is a case report where someone developed this after an acoustic trauma.

Impressive article - and this does happens. A very professional team was involved. I doubt that most us would ever be able to get such a team for discovery and get treated.

 

[Orions Pain]

Me too this facial/trigeminal stuff wasn't really an immediate issue. I had predominantly ear fullness/pressure and pain but after a few months that's gone away only to be replaced by this.

I'm actually unnerved by how the majority of medical practitioners seem completely unfamiliar with the concept of noise-induced pain. Makes me feel like a medical anomaly like some kind of sick joke.

Same for me with the pressure! That still comes and goes but the facial stuff/burning is so much scarier!

But I definitely agree! They won't even take the time to research it to see what you're talking about. Any time I brought up hyperacusis to a doctor it got completely brushed off. My doctors ears only perked up when I mentioned Trigeminal nerve stuff.

I just can't believe these issues are SOOO rare. Noise injuries I mean. I still have a hard time comprehending that this is all real and more people don't deal with this.

And even within the hyperacusis community the facial burning seems fairly rare as well.

Have you ever had any sort of accident/head/ neck related issue prior to your hyperacusis?

 

[serendipity1996]

Same for me with the pressure! That still comes and goes but the facial stuff/burning is so much scarier!

But I definitely agree! They won't even take the time to research it to see what you're talking about. Any time I brought up hyperacusis to a doctor it got completely brushed off. My doctors ears only perked up when I mentioned Trigeminal nerve stuff.

I just can't believe these issues are SOOO rare. Noise injuries I mean. I still have a hard time comprehending that this is all real and more people don't deal with this.

And even within the hyperacusis community the facial burning seems fairly rare as well.

Have you ever had any sort of accident/head/ neck related issue prior to your hyperacusis?

Yeah, the facial stuff is truly bizarre.

So true, the ENT I was referred to, whilst familiar with tinnitus and hyperacusis, said the pain was 'clinically irrelevant' and kind of brushed it off. Like it's pain - of course it's going to worry me. I also still think that this sort of very real, substantial physical pain too often gets conflated with misophonia or phonophobia like if you could just overcome your 'anxiety' about sound then it wouldn't be an issue.

I'm 24 and I reckon my tinnitus and hyperacusis was initially triggered by prolonged overuse of headphones and then a few incidents where I visited nightclubs etc which exacerbated things. Compared to many of my peers my noise exposure was probably not even that excessive - I've never even been to a concert before. But then you get guys who work in noisy factories for 40 years who come out with mild garden-variety hearing loss. I never had any head/neck etc injuries or issues prior to all this and, in my case at least, it looks like it stems from cochlear damage fundamentally but it's just scary how the symptoms can spread like this and result in baffling facial pain.

It seems like regular hearing loss isn't particularly uncommon going by the statistics but then other nasty consequences of acoustic trauma like hyperacusis seem to be so so rare. I honestly wonder why given how noisy the world is nowadays.

 

[Lucifer]

Yeah, the facial stuff is truly bizarre.

So true, the ENT I was referred to, whilst familiar with tinnitus and hyperacusis, said the pain was 'clinically irrelevant' and kind of brushed it off. Like it's pain - of course it's going to worry me. I also still think that this sort of very real, substantial physical pain too often gets conflated with misophonia or phonophobia like if you could just overcome your 'anxiety' about sound then it wouldn't be an issue.

I'm 24 and I reckon my tinnitus and hyperacusis was initially triggered by prolonged overuse of headphones and then a few incidents where I visited nightclubs etc which exacerbated things. Compared to many of my peers my noise exposure was probably not even that excessive - I've never even been to a concert before. But then you get guys who work in noisy factories for 40 years who come out with mild garden-variety hearing loss. I never had any head/neck etc injuries or issues prior to all this and, in my case at least, it looks like it stems from cochlear damage fundamentally but it's just scary how the symptoms can spread like this and result in baffling facial pain.

It seems like regular hearing loss isn't particularly uncommon going by the statistics but then other nasty consequences of acoustic trauma like hyperacusis seem to be so so rare. I honestly wonder why given how noisy the world is nowadays.

Before we all got tinnitus and hyperacusis we all knew that loud sound causes us hearing loss but what they didn't tell us is that you can also get hyperacusis (pain and loudness) and tinnitus which can be permanent from loud sound.

If they would have advocated better in raising awareness about hyperacusis and tinnitus maybe people will treat these issues properly and actually advise us to wear earplugs/earmuffs or lower the sound to a certain decibel.

Why was there better awareness about smoking kills and wearing sunblock when outside in the sun.

 

[Orions Pain]

Yeah, the facial stuff is truly bizarre.

So true, the ENT I was referred to, whilst familiar with tinnitus and hyperacusis, said the pain was 'clinically irrelevant' and kind of brushed it off. Like it's pain - of course it's going to worry me. I also still think that this sort of very real, substantial physical pain too often gets conflated with misophonia or phonophobia like if you could just overcome your 'anxiety' about sound then it wouldn't be an issue.

I'm 24 and I reckon my tinnitus and hyperacusis was initially triggered by prolonged overuse of headphones and then a few incidents where I visited nightclubs etc which exacerbated things. Compared to many of my peers my noise exposure was probably not even that excessive - I've never even been to a concert before. But then you get guys who work in noisy factories for 40 years who come out with mild garden-variety hearing loss. I never had any head/neck etc injuries or issues prior to all this and, in my case at least, it looks like it stems from cochlear damage fundamentally but it's just scary how the symptoms can spread like this and result in baffling facial pain.

It seems like regular hearing loss isn't particularly uncommon going by the statistics but then other nasty consequences of acoustic trauma like hyperacusis seem to be so so rare. I honestly wonder why given how noisy the world is nowadays.

"Clinically irrelevant" wow I would have said well I'm sure if you had daily burning ear/face pain it would suddenly become very clinically relevant!

Doctors are idiots. I recently got a new one who I thought was finally a bit understanding. The one who said my symptoms sound like TN. Well I had that CT scan and her only follow up on that was "your CT Came out normal"

No follow up on if the meds are working. No follow up on the referral for a neurologist I asked for, nothing. Like you grow up seeing these caring, empathetic doctors on TV and quickly learn that's not the case.

I think I've received more empathy from Starbucks employees.

But wow that's crazy that you have those symptoms going on without concerts and what not.

Some days I wonder, is the H/T all symptoms of TN? Or is the TN irritation a symptom of some sort of noise damage. Why do most people get mild T if anything and we get stuck with these crazy things?

I genuinely just want to know what is going on. Some say leave it alone/give it silence. Others say noise exposure. So far I've tried both and haven't gotten better so it's beyond frustrating.

At this point I don't care about concerts and music. I just want to be able to go to work and go grocery shopping without feeling like someone lit a match in my ear

 

[Juan]

Me too this facial/trigeminal stuff wasn't really an immediate issue. I had predominantly ear fullness/pressure and pain but after a few months that's gone away only to be replaced by this.

I'm actually unnerved by how the majority of medical practitioners seem completely unfamiliar with the concept of noise-induced pain. Makes me feel like a medical anomaly like some kind of sick joke.

I don't think doctors are unfamiliar but maybe hopeless about it. They know they can't fix it so doctors don't pay any further attention to it.

 

[Juan]

Anyone here have experiences with this? I'm starting to suspect this is what I have as I often experience cool/burning pains throughout my face, mainly in my forehead, jaw and cheeks. Lately I've been feeling it on my eyelids as well. Sometimes I feel it at the back of my neck, and down my nose as well.

That can be just tension. Sometimes the physiotherapist presses near my shoulder blades or on my shoulders or neck and there is a reaction behind my eyes, or inside my ears. That's the result of cramps, trigger points and tension.

I have never had trigeminal neuralgia, so don't know personally what it is like, but a friend did have it. If you had that you will very likely be in hospital. She couldn't stand, had vertigo attacks etc and was put on strong medication, although I am not sure if there is something specific for this condition or doctors use general meds that work for other things too...

So if you are in doubt you can always go and have image testing...

 

[xyz]

So if you are in doubt you can always go and have image testing...

Should this be visible in a normal MRI scan?

 

[Juan]

Should this be visible in a normal MRI scan?

That's just my guess... for image scanning one has to check with a doctor before.

 

[Orions Pain]

Should this be visible in a normal MRI scan?

No. Even classic trigeminal neuralgia, which is often caused by a nerve compressed by a blood vessel often doesn't show up on an MRI. You have to have a special MRI called a FIESTA, and even then there are cases where compressions aren't shown until an MVD surgery is done

Trigeminal neuralgia can have other "causes" besides a blood vessel compressing a nerve too. Unfortunately in these cases not much can be done about it except medication.

 

[Juan]

No. Even classic trigeminal neuralgia, which is often caused by a nerve compressed by a blood vessel often doesn't show up on an MRI. You have to have a special MRI called a FIESTA, and even then there are cases where compressions aren't shown until an MVD surgery is done

What a name for an MRI haha... "FIESTA". Oh my God.

 

[lauracolle]

I'm experiencing kind of similar symptoms. My H started like loudness H. It was very mild and I could feel I was improving as the months progressed. It was almost completely gone until I went to have drinks and there was fairly loud music (didn't bother me at the time though). A few days after this event, I started experiencing the facial symptoms: pressure below my eyes, quite severe, I guess like sinus pain and also pressure/tingling around my jaw. Also extreme pressure pain right beneath my eyebrows.

Then I experienced a second setback due to the fireworks at December 31st, while I was inside my house. My symptoms worsened hereafter. I did my best to stay in as much quiet as possible ever since and I guess improved quite a bit. Fast forward to last weekend: I spent a few hours with my baby nephew who was crying constantly, really felt that the day after. Last Tuesday I had a cleaning at the dentist (didn't use earplugs as I thought it wouldn't be useful due to the occlusion effect) and now I've reached an absolute low in my symptoms. Constant facial pain, tingling, so much that it's making me nauseous. Also extreme sound sensitivity, can't even leave my house.

Sorry about venting: I feel really hopeless as I know there is a connection between all these symptoms, but not one doctor understands or is willing to figure it out. Or they just genuinely don't know.

 

[Juan]

I'm experiencing kind of similar symptoms. My H started like loudness H. It was very mild and I could feel I was improving as the months progressed. It was almost completely gone until I went to have drinks and there was fairly loud music (didn't bother me at the time though). A few days after this event, I started experiencing the facial symptoms: pressure below my eyes, quite severe, I guess like sinus pain and also pressure/tingling around my jaw. Also extreme pressure pain right beneath my eyebrows.

Then I experienced a second setback due to the fireworks at December 31st, while I was inside my house. My symptoms worsened hereafter. I did my best to stay in as much quiet as possible ever since and I guess improved quite a bit. Fast forward to last weekend: I spent a few hours with my baby nephew who was crying constantly, really felt that the day after. Last Tuesday I had a cleaning at the dentist (didn't use earplugs as I thought it wouldn't be useful due to the occlusion effect) and now I've reached an absolute low in my symptoms. Constant facial pain, tingling, so much that it's making me nauseous. Also extreme sound sensitivity, can't even leave my house.

Sorry about venting: I feel really hopeless as I know there is a connection between all these symptoms, but not one doctor understands or is willing to figure it out. Or they just genuinely don't know.

Hi Laura! Do you have delayed symptoms after sound exposure, or immediate symptoms?

 

[lauracolle]

Hi Laura! Do you have delayed symptoms after sound exposure, or immediate symptoms?

Hi Juan, I think mostly delayed as the pain and pressure in my face increased hours and days after the dentist cleaning. However I'm not sure as I also can't handle too many sounds now right at this moment. It's a total mess.

 

[Juan]

Hi Juan, I think mostly delayed as the pain and pressure in my face increased hours and days after the dentist cleaning. However I'm not sure as I also can't handle too many sounds now right at this moment. It's a total mess.

That sounds like pain hyperacusis.

 

[Kriszti]

I have never had trigeminal neuralgia, so don't know personally what it is like, but a friend did have it. If you had that you will very likely be in hospital. She couldn't stand, had vertigo attacks etc and was put on strong medication, although I am not sure if there is something specific for this condition or doctors use general meds that work for other things too...

How is your friend doing now?

 

[lauracolle]

That sounds like pain hyperacusis.

I'm afraid so. Do you have any idea on why I feel it in my face and not my ears? I do have TMJ issues. Is there any hope for recovery from this nightmare?

 

[Juan]

I'm afraid so. Do you have any idea on why I feel it in my face and not my ears? I do have TMJ issues. Is there any hope for recovery from this nightmare?

My guess would be either irradiated pain, or some nerve interacting (irritation or something like that), or some kind of inflammation. But if you asks doctors I think they wont be much more specific than that, unless they can see something abnormal on imaging tests.

 

[Juan]

How is your friend doing now?

She recovered, but I remember at the time her symptoms were very obvious and had to be taken to hospital on emergency. Stayed there for a few weeks, and then more or less recovered. She had other health conditions, and she is much older than us too.