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?

@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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@patyrod

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

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Thank you I have tn2 I am thinking of getting it I also have autoimmune

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@denny2788

Thank you I have tn2 I am thinking of getting it I also have autoimmune

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Yes, you need to get vaccinated. My autoimmune disease is called UCTD. It is kind of like pre-lupus. I also have FOSMN, they think. That is a very rare disease.

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@patyrod

Yes, you need to get vaccinated. My autoimmune disease is called UCTD. It is kind of like pre-lupus. I also have FOSMN, they think. That is a very rare disease.

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Thank you very much because I did not know what to do

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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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Thank you so much

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Can you get the covid vaccine if you have atypical trigeminal neuralgia type 2

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@denny2788

Can you get the covid vaccine if you have atypical trigeminal neuralgia type 2

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Hi Denny,
I moved your question to the discussion where you received a response from @patyrod. I wanted to make sure you saw it here: https://connect.mayoclinic.org/comment/611127/

Mayo Clinic recommends getting the vaccine.

"Can I get a COVID-19 vaccine if I have an existing health condition?
Yes, if you have an existing health condition you can get a COVID-19 vaccine — as long as you haven't had an allergic reaction to a first dose of a COVID-19 vaccine or any of its ingredients. But there is limited information about the safety of the COVID-19 vaccines in people who have weakened immune systems or autoimmune conditions.

COVID-19 vaccines also might not fully protect people from COVID-19 who have a weakened immune system that is caused by HIV, certain conditions or medications. It might be necessary to continue taking precautions."

Read more in Mayo's Vaccine Guide https://www.mayoclinic.org/coronavirus-covid-19/vaccine

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