Anyone with Facial/Trigeminal Nerve Pain and/or TTTS Tried Carbamazepine?

[Rojo]

I'm basically being forced to try psych meds for my "anxiety" so I'm trying to figure out what meds might actually help me, most antidepressants have gone poorly (citolopram, paxil, amitriptyline, remeron) the only one maybe left to try is nortriptyline. Taking suggestions there.

For nerve pain/anti-convulsant/possible bi-polar I was considering trying carbamazepine since I get the facial neuralgia pain with sound and have tensor tympani syndrome along with throat spasms that give me a machine-gun tinnitus.

Anyone got any experience? I see it suggested often but few people talking about it working for them...

 

[Contrast]

Daily reminder that the word "hyperacusis" is not a specific medical diagnose but rather a vague term to describe several unclassified poorly understood conditions, defined as both noise induced pain and amplified loudness perception.There may even be two types of hyperacusis that cause pain.

It also is evident that the trigeminal nerve plays a role in one form of "hyperacusis" and a lot of people falsely assume they develop TMD immediately after a acoustic trauma event or a tooth ache.

I wonder how Jastreboff would address this hyperacusis with TRT, would someone with loudness hyperacusis be treated the same way?

 

[Greg Sacramento]

I was considering trying carbamazepine since I get the facial neuralgia pain with sound and have tensor tympani syndrome along with throat spasms that give me a machine-gun tinnitus.

Microvascular decompression.

Symptoms of facial, trigeminal or glossopharyngeal neuralgia (somatic sensory), hemifacial spasm, throat spasms (somatic motor), tensor tympani, tinnitus (special sensory) and some cases of essential hypertension and anxiety are caused by these vessels compressing cranial nerves V, IX–X, VII, VIII, and left X and medulla oblongata. Using microsurgical techniques, the symptoms may be relieved by vascular decompression. Quite successful.
Use of B complex daily may bring some relief. Carbamazepine has some drawbacks and limitations for a fair amount depending on study. Study this drug before use.

Taking a warm shower if you can tolerate the sound after you get up may help.

 

[Gman]

Microvascular decompression.

Symptoms of facial, trigeminal or glossopharyngeal neuralgia (somatic sensory), hemifacial spasm, throat spasms (somatic motor), tensor tympani, tinnitus (special sensory) and some cases of essential hypertension and anxiety are caused by these vessels compressing cranial nerves V, IX–X, VII, VIII, and left X and medulla oblongata. Using microsurgical techniques, the symptoms may be relieved by vascular decompression. Quite successful.
Use of B complex daily may bring some relief. Carbamazepine has some drawbacks and limitations for a fair amount depending on study. Study this drug before use.

Could that be why my trigeminal nerve low hum is sometimes pulsatile, other times constant and sometimes silent? If I rub anywhere on my eye/face/around ear that corresponds with it, I get a momentary louder hum and then a decrease for a while.

 

[Greg Sacramento]

Could that be why my trigeminal nerve low hum is sometimes pulsatile, other times constant and sometimes silent? If I rub anywhere on my eye/face/around ear that corresponds with it, I get a momentary louder hum and then a decrease for a while.

Yes. The facial nerve sensory complex connection to ear muscles and cranial nerves.

Besides the above, the sternocleidomastoid, sinus, thyroid, trigeminal nerve, cranial nerves, occipital complex, C1 C2 leverage pressure and muscle pressure of a straighten neck have rights to visit anywhere above the shoulders.

I added taking a warm shower after getting up may help if one can tolerate the sound.

 

[Contrast]

It is my own personal hypothesis that noise induced trauma alone can lead to trigeminal neuralgia type symptoms.

Any thoughts on this?

 

[Greg Sacramento]

It is my own personal hypothesis that noise induced trauma alone can lead to trigeminal neuralgia type symptoms.

Any thoughts on this?

I think that's true. There a couple of studies that ready get into this. One study says that the neck must be hyperextended along with noise inducement and often caused while receiving dental treatment. They discuss the vertebral artery getting a temporary blockage of a second or two. It get's a little complex as nerves enter the brain react.

 

[Contrast]

I think that's true. There a couple of studies that ready get into this. One study says that the neck must be hyperextended along with noise inducement and often caused while receiving dental treatment. They discuss the vertebral artery getting a temporary blockage of a second or two. It get's a little complex as nerves enter the brain react.

Would that mean that at least one type of noise induced pain is trigeminal neuralgia, should a subgroup of hyperacusis sufferers question to get that diagnoses?

 

[Greg Sacramento]

Would that mean that at least one type of noise induced pain is trigeminal neuralgia, should a subgroup of hyperacusis sufferers question to get that diagnoses?

Agree - believe so. A little direct and indirect related information.

http://abablearthritis.com/diseases-conditions/tinnitus/atypical-trigeminal-neuralgia-tinnitus/

 

[Greg Sacramento]

I had suggested to someone who was told that they have perfect hearing with severe somatic neck and jaw tinnitus for 3 years to try magnesium to see if they get a little relief. This person did and now tinnitus is completely gone, but TMJ is still a problem. I don't understand how unless the occipital nerve at the atlas was applying pressure to muscles or muscle pressure to other major nerves or cranial nerves. Magnesium can lessen stressed and tight muscles.

 

[Contrast]

I had suggested to someone who was told that they have perfect hearing with severe somatic neck and jaw tinnitus for 3 years to try magnesium to see if they get a little relief. This person did and now tinnitus is completely gone, but TMJ is still a problem. I don't understand how unless the occipital nerve at the atlas was applying pressure to muscles or muscle pressure to other major nerves or cranial nerves. Magnesium can lessen stressed and tight muscles.

I take magnesium A LOT, and it did not stop my trigeminal nerve issues.

 

[Greg Sacramento]

I take magnesium A LOT, and it did not stop my trigeminal nerve issues.

It didn't help me either. Maybe just a little when I first started taking it.

 

[Gman]

Agree - believe so. A little direct and indirect related information.

http://abablearthritis.com/diseases-conditions/tinnitus/atypical-trigeminal-neuralgia-tinnitus/

Nice one Greg. Badly written site, but I can identify with a lot of this, but not the ear hotness or face numbness.

I take magnesium A LOT, and it did not stop my trigeminal nerve issues.

Same.

https://www.biogetica.com/how-to-cure-trigeminal-neuralgia-with-natural-treatment
This has got to be a scam.

 

[Johan_L]

Microvascular decompression.

Symptoms of facial, trigeminal or glossopharyngeal neuralgia (somatic sensory), hemifacial spasm, throat spasms (somatic motor), tensor tympani, tinnitus (special sensory) and some cases of essential hypertension and anxiety are caused by these vessels compressing cranial nerves V, IX–X, VII, VIII, and left X and medulla oblongata. Using microsurgical techniques, the symptoms may be relieved by vascular decompression. Quite successful.
Use of B complex daily may bring some relief. Carbamazepine has some drawbacks and limitations for a fair amount depending on study. Study this drug before use.

Taking a warm shower if you can tolerate the sound after you get up may help.

How would a doctor diagnose where to perform vascular decompression? I have these symptoms flare up from my latest noise exposure.

https://www.biogetica.com/how-to-cure-trigeminal-neuralgia-with-natural-treatment
This has got to be a scam.

I agree. This is the "science" behind. https://www.sciencedirect.com/science/article/pii/S1475491607000161?via=ihub

However.. if there is a 2% chance it works, I might try it. Hate being desperate...

 

[Gman]

How would a doctor diagnose where to perform vascular decompression? I have these symptoms flare up from my latest noise exposure.



I agree. This is the "science" behind. https://www.sciencedirect.com/science/article/pii/S1475491607000161?via=ihub

However.. if there is a 2% chance it works, I might try it. Hate being desperate...

But what are the active ingredients?

If you try it, please let us know how you go.

 

[Greg Sacramento]

How would a doctor diagnose where to perform vascular decompression? I have these symptoms flare up from my latest noise exposure.

MRI.
Many forms of neuralgia exist for possibilities with tinnitus. In your situation it may be targeted on physical condition(s) such as I mentioned in post #3 and #9 above. The ears are basically responding (hyperacusis, TTTS) to the physical condition.

https://www.researchgate.net/publication/42372446_Microvascular_Decompression_for_Tinnitus
https://bmcneurol.biomedcentral.com/articles/10.1186/1471-2377-13-42

In another thread today you ask myself and another to reply. Said from a medical provider - Botox provides a longer effect than a nerve block. This bring volumes of study information as to risk versus reward. There's hundred of single condition studies on Botox with consideration to effect and safely. With some condition(s) (areas) Botox can travel to unwanted desired places. From my studies, nerve blocks on most areas of condition is preferred. One red flag is always the views of a medical provider that performs certain procedures only, as that's their bread and butter.

A link(s) for those with associated PT and other topic defined processing.
https://www.hormonesmatter.com/pulsatile-tinnitus-whooshing/

 

[Marko Nakovski]

@Contrast

"It is my own personal hypothesis that noise induced trauma alone can lead to trigeminal neuralgia type symptoms.

Any thoughts on this?"

For example when the pain first appears in the ear, then continues to spread in other parts of the head because of it?

 

[eaeh2020]

Daily reminder that the word "hyperacusis" is not a specific medical diagnose but rather a vague term to describe several unclassified poorly understood conditions, defined as both noise induced pain and amplified loudness perception.There may even be two types of hyperacusis that cause pain.

It also is evident that the trigeminal nerve plays a role in one form of "hyperacusis" and a lot of people falsely assume they develop TMD immediately after a acoustic trauma event or a tooth ache.

I wonder how Jastreboff would address this hyperacusis with TRT, would someone with loudness hyperacusis be treated the same way?

No. Hyperacusis with pain --- the Foundation is the best source for this. I have it. His therapy is not the right therapy for those with severe pain response to sound. PLEASE if anyone has this do not hurt yourself. Protect yourself. TRT is not the right path for everyone.

 

[Contrast]

No. Hyperacusis with pain --- the Foundation is the best source for this. I have it. His therapy is not the right therapy for those with severe pain response to sound. PLEASE if anyone has this do not hurt yourself. Protect yourself. TRT is not the right path for everyone.

I agree with everything you said. TRT is horse shit.

 

[eaeh2020]

I agree with everything you said. TRT is horse shit.

Follow the Hyperacusis Research. They are doing a study right now!!! They seem to be the only ones that get it!!!

https://hyperacusisresearch.org/

 

[LindaS]

I take magnesium A LOT, and it did not stop my trigeminal nerve issues.

@Contrast

Do you still have trigeminal nerve issues or have you had improvement or has it gone away?

I have a lot of pain and would be grateful to you for this information.

 

[Contrast]

@Contrast

Do you still have trigeminal nerve issues or have you had improvement or has it gone away?

I have a lot of pain and would be grateful to you for this information.

The pain went away but I still get facial tightness and aches from specific high pitch noises. my new health problems are much worse.

 

[LindaS]

@Contrast

Thank you for replying. I'm sorry you are having other health issues.
I read through some of your posts but couldn't find anything.
I hope that whatever it is will improve for you.

 

[Midas]

It is my own personal hypothesis that noise induced trauma alone can lead to trigeminal neuralgia type symptoms.

Any thoughts on this?

Yes, this is my believe also. Luckily Dr. Norena (Marceille France) is investigating this path. He is investigating TTM / trigeminal nerve inflammation.
My father has immense hearing loss due to noise exposure all his life and almost deaf, he has no tinnitus or hyperacusis. I've been exposed to noise all my life also but I believe one single noise trauma started all my problems (severe tinnitus and hyperacusis). It felt like my ears snapped.

 

[aeverhart139]

Daily reminder that the word "hyperacusis" is not a specific medical diagnose but rather a vague term to describe several unclassified poorly understood conditions, defined as both noise induced pain and amplified loudness perception.There may even be two types of hyperacusis that cause pain.

It also is evident that the trigeminal nerve plays a role in one form of "hyperacusis" and a lot of people falsely assume they develop TMD immediately after a acoustic trauma event or a tooth ache.

I wonder how Jastreboff would address this hyperacusis with TRT, would someone with loudness hyperacusis be treated the same way?

Ignore him on that. Research Hyperacusis Research. They advocate against TRT.