Trigeminal numbness

Posted by gregk @gregk, Aug 31, 2018

About 3 months ago I awoke with my tongue numb on the right side. The next day the numbness was all over the right side of my face. I've had a CT scan, MRI scan, blood work and I've met with a neurologist. No signs of palsy, MS…nothing. All my blood work is clean. The only symptom is that it feels like the trigeminal nerve on the right side of my face is numb. No pain, just numb.
I had some fatigue and dizzyiess for a bit. Then my PCP, with a consult from a neurologist, prescribe gabapentin. I feel that exacerbated my dizziness, fatigue and now double vision. After my visit with a neurologist he said that there's no reason to be on that so I weened myself off. I've been fine ever since. No fatigue, dizziness, or double vision anymore. But I still have the nerve numbness.
Anybody out there with the same? Any recommendations? Any doctors have a cure?

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@katiec

I know this is an old post, but I have the exact same symptoms…numbness on the right side of my tongue with decreased taste which occurred overnight, numbness and tingling on my right cheek and forehead but no pain. I have seen a neurologist and had an MRI/MRA which did not show a cause. I have seen an ENT and had a workup including a MRI of the neck which was normal and an extensive amount of blood work which has been normal. I’m curious if you ever found a reason for your symptoms?! Or anything that helped the numbness? I’ve held off on gabapentin so far or other meds because it’s not actually painful, just frustrating numbness.

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Hello @katiec – Welcome to Connect. I think the person you responded to that started the discussion is no longer following Connect. @jenniferhunter responded to his post with her thoughts/suggestions in this post earlier in the discussion – https://connect.mayoclinic.org/discussion/trigeminal-numbness/?pg=1#comment-122499

I saw this article which may provide some helpful information – What Causes Numbness on the Right Side of the Face?: https://www.healthline.com/health/right-sided-facial-numbness

Sorry to hear your doctors have not been able to provide a diagnosis or treatment yet. Did your doctors have any other suggestions as to what might be causing the numbness and tingling on just your right cheek and forehead along with the right side of your tongue?

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I have bilateral trigeminal neuropathy from the midline of my scalp down to my chin, involving my whole my face and inside of my mouth. It is like a veil of numbness. An MRI showed that there was inflammation of my trigeminal nerve in the brain. Subsequent MRIs have not shown inflammation. I guess the damage was done. I have been like this for 5 years. The neurologist and rheumatologist have diagnosed me with UCTD and FOSMN. Does anyone else have bilateral trigeminal neuropathy?

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Hello @patyrod and denny2788, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others.

@patyrod, Thank you for posting and sharing your diagnosis. @denny2788 also posted about having bilateral trigeminal neuropathy. The National Institute of Neurological Disorders & Stroke has a fact sheet that has more information on the condition here:
— Trigeminal Neuralgia Fact Sheet: https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Trigeminal-Neuralgia-Fact-Sheet

Have either of you started a treatment yet? Has it helped?

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@johnbishop

Hello @patyrod and denny2788, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others.

@patyrod, Thank you for posting and sharing your diagnosis. @denny2788 also posted about having bilateral trigeminal neuropathy. The National Institute of Neurological Disorders & Stroke has a fact sheet that has more information on the condition here:
— Trigeminal Neuralgia Fact Sheet: https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Trigeminal-Neuralgia-Fact-Sheet

Have either of you started a treatment yet? Has it helped?

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Thanks, John, but we do not have trigeminal neuralgia. Trigeminal neuropathy is very different.

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@denny2788

I do but it is just starting

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Have you seen a neurologist or rheumatologist?

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@patyrod

Thanks, John, but we do not have trigeminal neuralgia. Trigeminal neuropathy is very different.

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This article from 2021 talks about both bilateral trigeminal neuralgia which is very rare and trigeminal neuropathy.

Trigeminal neuralgia: a practical guide: https://pn.bmj.com/content/early/2021/06/09/practneurol-2020-002782.full

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@patyrod

Have you seen a neurologist or rheumatologist?

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Going to the reumatoligst friday

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@patyrod

Have you seen a neurologist or rheumatologist?

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Do you know if you can get the covid vaccine with tn2

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@denny2788

Do you know if you can get the covid vaccine with tn2

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I have bilateral trigeminal neuropathy, not trigeminal neuralgia. Yes, I have received both vaccines.

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