Trigeminal Neuralgia?

[Orions Pain]

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.

I haven't figured out a pattern to it, but I don't have unilateral/sharp pains, but rather bilateral burning that persists for days (Atypical TN).

Any advise or stories are appreciated. I am absolutely terrified, and as I have hyperacusis, I am afraid of getting the MRI that was suggested to me by my doctor. If this was caused by excessive noise, can an MRI even detect anything? From my understanding the most common cause of TN is a blood vessel compressing a nerve.

 

[xyz]

I am also clueless what is the cause of my hyperacusis. I did an MRI to exclude brain tumor and the scan came out fine, however this was pure torture for me. I would also be interested if there are any diagnostic methods which might reveal the cause of pain hyperacusis.
Since your H is progressing despite you being in a quite environment I would doubt that it is noise induced.

 

[MrCrybaby]

Pain in the face is a potential aspect of pain hyperacusis. See this example in which sound triggers pain throughout the face, head, and neck. A scan could rule out TN in your case if you want to be vigillant.

WARNING: Screeching noises throughout video, please mute if you have hyperacusis

 

[Contrast]

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.

I haven't figured out a pattern to it, but I don't have unilateral/sharp pains, but rather bilateral burning that persists for days (Atypical TN).

Any advise or stories are appreciated. I am absolutely terrified, and as I have hyperacusis, I am afraid of getting the MRI that was suggested to me by my doctor. If this was caused by excessive noise, can an MRI even detect anything? From my understanding the most common cause of TN is a blood vessel compressing a nerve.

I had symptoms like this early on, facial burning from sound. It went away after the first few months.

 

[Orions Pain]

Pain in the face is a potential aspect of pain hyperacusis. See this example in which sound triggers pain throughout the face, head, and neck. A scan could rule out TN in your case if you want to be vigillant.

It's not pain, its a cold numbness sensation. When I think pain I think sharp zaps, stinging, etc as many describe. Mine feels more just like icy hot rubbed all over my face.

I was thinking of starting with CT scans to rule out any sort of pinched nerve or issues with my neck or things like that. I am terrified of getting an MRI as I don't want to make things worse for myself.

 

[Orions Pain]

I am also clueless what is the cause of my hyperacusis. I did an MRI to exclude brain tumor and the scan came out fine, however this was pure torture for me. I would also be interested if there are any diagnostic methods which might reveal the cause of pain hyperacusis.
Since your H is progressing despite you being in a quite environment I would doubt that it is noise induced.

Did you wear hearing protection during your MRI? I don't think there's much else that can reveal pain hyperacusis if it's noise induced.

 

[MrCrybaby]

It's not pain, its a cold numbness sensation. When I think pain I think sharp zaps, stinging, etc as many describe. Mine feels more just like icy hot rubbed all over my face.

I was thinking of starting with CT scans to rule out any sort of pinched nerve or issues with my neck or things like that. I am terrified of getting an MRI as I don't want to make things worse for myself.

Go for a CT scan if that will put you at ease. I don't think they are loud.

Pain is a bit of a stand in word. If I wanted to be more poetic I'd say my face feels tingly and feverish.

If it is set of by sound it is very likely related to you acoustic trauma.

Good luck!

 

[xyz]

Did you wear hearing protection during your MRI? I don't think there's much else that can reveal pain hyperacusis if it's noise induced.

I had earmuffs. But I would definitely recommend earmuffs + earplugs if MRI is really neccessary.

 

[Tybs]

I had earmuffs. But I would definitely recommend earmuffs + earplugs if MRI is really neccessary.

A silent MRI is even better. Some of the newer devices don't go over 85db. Add ear protection on top of that, and you should be safe.

 

[DebInAustralia]

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.

I haven't figured out a pattern to it, but I don't have unilateral/sharp pains, but rather bilateral burning that persists for days (Atypical TN).

Any advise or stories are appreciated. I am absolutely terrified, and as I have hyperacusis, I am afraid of getting the MRI that was suggested to me by my doctor. If this was caused by excessive noise, can an MRI even detect anything? From my understanding the most common cause of TN is a blood vessel compressing a nerve.

Is the cause of your onset unknown?

Consider testing for Lyme and co. Many of these infections do cause neurological symptoms.

Consider deficiencies i.e. B12.

 

[JRC1]

You need to find a neurologist/neurosurgeon who treats trigeminal neuralgia. Better yet, you need to find one who treats atypical trigeminal neuralgia. There are a lot more of the former than the latter. They are going to want you to get an MRI. Then you need to find a lower noise MRI machine. I think Toshiba makes one. If you can find the Toshiba rep for your area, they can probably help you. Check out the website livingwithfacialpain.org.

 

[Orions Pain]

Is the cause of your onset unknown?

Consider testing for Lyme and co. Many of these infections do cause neurological symptoms.

Consider deficiencies i.e. B12.

I'm pretty sure the cause of mine is noise (concerts, and a bad experience with a blow dryer)
My main concern is that I've also been having slight burning in my legs (the front of my legs) and sometimes the cold burning is felt in my back (shoulder blades) as well.

I have never had these type of issues prior to tinnitus or hyperacusis. I know it also could all be unrelated but it's just all so strange and also having cold numbers burning in my cheeks and jaw and eyelids that comes and goes is very very concerning.

I don't really have any other symptoms of Lyme either.

 

[Orions Pain]

A silent MRI is even better. Some of the newer devices don't go over 85db. Add ear protection on top of that, and you should be safe.

I'm not even sure how to go about finding a silent MRI. I've done some research but this info is difficult to access, will probably have to do some phone calls. I've only been able to find open MRI's close to me, but I have been advised open MRI's don't show as much detail.

 

[Orions Pain]

Go for a CT scan if that will put you at ease. I don't think they are loud.

Pain is a bit of a stand in word. If I wanted to be more poetic I'd say my face feels tingly and feverish.

If it is set of by sound it is very likely related to you acoustic trauma.

Good luck!

None of my burning seems to be set off by sound which is sooo strange. I'm mostly homebound now due to COVID-19, so the loudest noises I have in my environment are either the sound of my mom putting away dishes (with me being in another room) or a car passing by when we go on walks.

Unless the burning is a super delayed reaction, so far I have not been able to connect it to being set off by sounds.

 

[Orions Pain]

I also wanted to add I have read on Facebook taking antibiotics can be linked to nerve damage. I have a history of taking antibiotics so perhaps this is my answer.

 

[Tybs]

I'm not even sure how to go about finding a silent MRI. I've done some research but this info is difficult to access, will probably have to do some phone calls. I've only been able to find open MRI's close to me, but I have been advised open MRI's don't show as much detail.

I've had some luck with finding silent 3T MRI scanners. One popped up last year in my country (NL), and I found another one in germany. They're not everywhere yet, but private diagnostic companies seem to make most use of them.

It can indeed be hard to get clear specs of the machine, but assuming you're planning a scan, these companies are usually willing to share the info on max decibels.

 

[Orions Pain]

I've had some luck with finding silent 3T MRI scanners. One popped up last year in my country (NL), and I found another one in germany. They're not everywhere yet, but private diagnostic companies seem to make most use of them.

It can indeed be hard to get clear specs of the machine, but assuming you're planning a scan, these companies are usually willing to share the info on max decibels.

How did you go about finding locations? I called Canon - the manufacturer of the Toshiba Pianissimo and the rep I spoke with was terribly rude and unhelpful. What kind of other companies are out there that offer a silent scan? Have you had an MRI?

 

[Tybs]

How did you go about finding locations? I called Canon - the manufacturer of the Toshiba Pianissimo and the rep I spoke with was terribly rude and unhelpful. What kind of other companies are out there that offer a silent scan? Have you had an MRI?

Calling a manufacturer won't help you. To understand why, imagine yourself in their position: all they do is deliver. There is no further profit for them to be made in answering patient's questions. Unless you happen to stumble upon a good-willing employee during his break, you're just going to be cut short.

Instead, search online for (silent) mri's. Then contact the companies that perform these scans: they want you as a customer, so they will go great lengths to pull you in. Ask them about the specs of their machines and the total of dB they produce, ear protection nót included in the calculation. If this number is 90dB or below, then you found a silent MRI. Try to confirm online whether this information is correct: this can be hard to find as max dB usually isn't mentioned in the specs, but a date of production can already help a lot. As silent MRI's are quite new, any model that is produced before ~2016 is out of the question for me. Google often provides other articles with bits and pieces of info that can take away (or confirm) reasonable doubts.

If you can't find the required info, then you might choose to take the company's word for it: they probably won't lie when using mail. The MRI that I had a few months ago was quite silent indeed for an MRI, no louder than a big vacuum cleaner when wearing ear protection.

 

[Orions Pain]

Calling a manufacturer won't help you. To understand why, imagine yourself in their position: all they do is deliver. There is no further profit for them to be made in answering patient's questions. Unless you happen to stumble upon a good-willing employee during his break, you're just going to be cut short.

Instead, search online for (silent) mri's. Then contact the companies that perform these scans: they want you as a customer, so they will go great lengths to pull you in. Ask them about the specs of their machines and the total of dB they produce, ear protection nót included in the calculation. If this number is 90dB or below, then you found a silent MRI. Try to confirm online whether this information is correct: this can be hard to find as max dB usually isn't mentioned in the specs, but a date of production can already help a lot. As silent MRI's are quite new, any model that is produced before ~2016 is out of the question for me. Google often provides other articles with bits and pieces of info that can take away (or confirm) reasonable doubts.

If you can't find the required info, then you might choose to take the company's word for it: they probably won't lie when using mail. The MRI that I had a few months ago was quite silent indeed for an MRI, no louder than a big vacuum cleaner when wearing ear protection.

I've searched for silent MRI's in my area and found virtually no information.

 

[Tybs]

I've searched for silent MRI's in my area and found virtually no information.

I guess there are no installments there yet... do you have the option to widen the search area?

 

[Contrast]

Pain in the face is a potential aspect of pain hyperacusis. See this example in which sound triggers pain throughout the face, head, and neck. A scan could rule out TN in your case if you want to be vigillant.

WARNING: Screeching noises throughout video, please mute if you have hyperacusis

That's the video mass eye and ear made, it has Dr. Liberman in it. An Otologist who specializes in studying the inner ear. They did a really good job with that video as it raises seriously awareness for what noise induced pain is and how little science knows about it.

The video is awesome because it helps explain to lay people EXACTLY what they are dealing with, so they won't be running around in the dark visiting ENT's that don't have a clue.

 

[Orions Pain]

I guess there are no installments there yet... do you have the option to widen the search area?

I found one 6 hours away that would be out of network for me. They must exist, I mean I live in California surrounded by research universities so there has to be something. It just isn't listed online anywhere. I may have to resort to calling radiology departments.

 

[Tybs]

I found one 6 hours away that would be out of network for me. They must exist, I mean I live in California surrounded by research universities so there has to be something. It just isn't listed online anywhere. I may have to resort to calling radiology departments.

I don't know your personal situation, but perhaps you could arrange something with a friend or relative? My father once drove me ten (four plus six) hours for an examination in Germany. He has a small house there for the holidays, so we used that place to spend the night.

If not, then radio departments could be a good plan B indeed.

 

[Juan]

I've searched for silent MRI's in my area and found virtually no information.

Silent MRI is not so quiet. Maybe it's still like 85 dbs or 90 dbs, and the noise also depends on what image resolution the radiologist wants to get for your test, for your MRI images.

 

[Orions Pain]

I don't know your personal situation, but perhaps you could arrange something with a friend or relative? My father once drove me ten (four plus six) hours for an examination in Germany. He has a small house there for the holidays, so we used that place to spend the night.

If not, then radio departments could be a good plan B indeed.

Unfortunately in the US, insurance makes it difficult. You have limited access to facilities. The place where I found one is a research university, so I'm not even sure if they allow scans for the general public. I have to find one of these machines at a hospital covered by my insurance which makes it even more difficult.

 

[Tybs]

Unfortunately in the US, insurance makes it difficult. You have limited access to facilities. The place where I found one is a research university, so I'm not even sure if they allow scans for the general public. I have to find one of these machines at a hospital covered by my insurance which makes it even more difficult.

Indeed, money can be another issue when it comes to MRI's. It's awesome when insurance pays for it, but that is not the case every time. I'm lucky in that I have both insurance and a stable income in my region. Still, the current time period makes it hard to actually get a useful appointment somewhere...

 

[Orions Pain]

Indeed, money can be another issue when it comes to MRI's. It's awesome when insurance pays for it, but that is not the case every time. I'm lucky in that I have both insurance and a stable income in my region. Still, the current time period makes it hard to actually get a useful appointment somewhere...

Yeah I called ALL the hospitals in my area who are covered for me, and all of them said their machines are loud. Some said I can wear ear plugs and bring my own muffs, some said I can't even bring my own ear plugs... so weird considering all of these hospitals are under one giant name. I did read here in the US sometimes if you offer to pay cash upfront you can use an out of network facility so that's my next step. The Pianissimo with zen MRI is only 65 dB according to their website.

But yes, this time period is terrible timing to suffer with anything.

 

[Frédéric]

Increased risk of tinnitus following a trigeminal neuralgia diagnosis: a one-year follow-up study

Background
Tinnitus due to hyperactivity across neuronal ensembles along the auditory pathway is reported. We hypothesized that trigeminal neuralgia patients may subsequently suffer from tinnitus. Using nationwide, population-based data and a retrospective cohort study design, we investigated the risk of tinnitus within 1 year following trigeminal neuralgia.

Methods
We used the Taiwan National Health Insurance Research Dataset, a claims database, to identify all patients diagnosed with trigeminal neuralgia from January 2001 to December 2014, 12,587 patients. From the remaining patients, we identified 12,587 comparison patients without trigeminal neuralgia by propensity score matching, using sex, age, monthly income, geographic region, residential urbanization level, and tinnitus-relevant comorbidities (hyperlipidemia, diabetes, coronary heart disease, hypertension, cervical spondylosis, temporomandibular joint disorders and injury to head and neck and index year). All study patients (n = 25,174) were tracked for a one-year period to identify those with a subsequent diagnosis of tinnitus over 1-year follow-up.

Results
Among total 25,174 sample patients, the incidence of tinnitus was 18.21 per 100 person-years (95% CI = 17.66 ~ 18.77), the rate being 23.57 (95% CI = 22.68 ~ 24.49) among patients with trigeminal neuralgia and 13.17 (95% CI = 12.53 ~ 13.84) among comparison patients. Furthermore, the adjusted Cox proportional hazard ratio for tinnitus in the trigeminal neuralgia group was 1.68 (95% CI = 1.58 ~ 1.80) relative to the comparison cohort.

Conclusions
We found a significantly increased risk of tinnitus within 1 year of trigeminal neuralgia diagnosis compared to those without the diagnosis. Further studies in other countries and ethnicities are needed to explore the relationship between trigeminal neuralgia and subsequent tinnitus.

Full article: https://thejournalofheadacheandpain.biomedcentral.com/articles/10.1186/s10194-020-01121-6

 

[Orions Pain]

Increased risk of tinnitus following a trigeminal neuralgia diagnosis: a one-year follow-up study

Background
Tinnitus due to hyperactivity across neuronal ensembles along the auditory pathway is reported. We hypothesized that trigeminal neuralgia patients may subsequently suffer from tinnitus. Using nationwide, population-based data and a retrospective cohort study design, we investigated the risk of tinnitus within 1 year following trigeminal neuralgia.

Methods
We used the Taiwan National Health Insurance Research Dataset, a claims database, to identify all patients diagnosed with trigeminal neuralgia from January 2001 to December 2014, 12,587 patients. From the remaining patients, we identified 12,587 comparison patients without trigeminal neuralgia by propensity score matching, using sex, age, monthly income, geographic region, residential urbanization level, and tinnitus-relevant comorbidities (hyperlipidemia, diabetes, coronary heart disease, hypertension, cervical spondylosis, temporomandibular joint disorders and injury to head and neck and index year). All study patients (n = 25,174) were tracked for a one-year period to identify those with a subsequent diagnosis of tinnitus over 1-year follow-up.

Results
Among total 25,174 sample patients, the incidence of tinnitus was 18.21 per 100 person-years (95% CI = 17.66 ~ 18.77), the rate being 23.57 (95% CI = 22.68 ~ 24.49) among patients with trigeminal neuralgia and 13.17 (95% CI = 12.53 ~ 13.84) among comparison patients. Furthermore, the adjusted Cox proportional hazard ratio for tinnitus in the trigeminal neuralgia group was 1.68 (95% CI = 1.58 ~ 1.80) relative to the comparison cohort.

Conclusions
We found a significantly increased risk of tinnitus within 1 year of trigeminal neuralgia diagnosis compared to those without the diagnosis. Further studies in other countries and ethnicities are needed to explore the relationship between trigeminal neuralgia and subsequent tinnitus.

Full article: https://thejournalofheadacheandpain.biomedcentral.com/articles/10.1186/s10194-020-01121-6

Soo... is tinnitus a symptom of trigeminal neuralgia? Does trigeminal neuralgia appear when you have an acoustic trauma/hyperacusis? It's clear there is some sort of connection especially since it's been known that the trigeminal nerve also works with the Eustachian tubes and tensor tympani muscle.

What we need to know is if there is a link between loud/excessive noise and trigeminal neuralgia.

 

[xyz]

What we need to know is if there is a link between loud/excessive noise and trigeminal neuralgia.

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.