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?

@rwinney

NOT acceptable. Call back, keep calling until you get a message into your Dr and schedule a follow up appointment. When was your last follow up since the surgery?

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about 2-3 weeks after surgery. About a month after the surgery which took place i Gainesville, FL, I moved up to NY near family as my husband had passed away 10 months earlier. I needed to be near my family and very close friends that are more family than anything. I will get my medical records from Shands Hospital and follow-up here in Rochester, NY – hopefully at Strong Memorial Hospital.

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@kraison1979

about 2-3 weeks after surgery. About a month after the surgery which took place i Gainesville, FL, I moved up to NY near family as my husband had passed away 10 months earlier. I needed to be near my family and very close friends that are more family than anything. I will get my medical records from Shands Hospital and follow-up here in Rochester, NY – hopefully at Strong Memorial Hospital.

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@kraison1979 Sounds like a plan. Good luck.

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@kraison1979

about 2-3 weeks after surgery. About a month after the surgery which took place i Gainesville, FL, I moved up to NY near family as my husband had passed away 10 months earlier. I needed to be near my family and very close friends that are more family than anything. I will get my medical records from Shands Hospital and follow-up here in Rochester, NY – hopefully at Strong Memorial Hospital.

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@kraison1979 when making an appointment with your neurologist, you may be able to sign a medical records release form at his or her office. Discuss this with your neurologist. The neurologist may be able to get the medical information needed to help you. Sorry to hear of your loss but I am glad you are amongst close family and friends. That makes a big difference in being around people who care. I wish you well.

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Yes, I have severe numbness on the right side of my nose, forehead, my tongue and right side inside my mouth. It's been 16 months since surgery. I am on 600 mg of gabapentin 2 X's a day – the gabapentin does nothing for me.

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Hi @kraison1979, I agree the gabapentin helps with pain. I have neuropathy on the left side of my body from my forehead to my toes. Unlike you, I don’t have the uncomfortable feeling in my mouth. Since the gabapentin is not working, I would contact the physician prescribing the medication to try another method or medication. Talk about how you would prefer to handle the pain.

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@avmcbellar

Hi @kraison1979, I agree the gabapentin helps with pain. I have neuropathy on the left side of my body from my forehead to my toes. Unlike you, I don’t have the uncomfortable feeling in my mouth. Since the gabapentin is not working, I would contact the physician prescribing the medication to try another method or medication. Talk about how you would prefer to handle the pain.

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I wold just as soon not take anything. The most disturbing thing is the terrible numbness in my mouth and the majority of my tongue. i have lost much of my taste senses along with the numbing in the roof of my mouth; needless to say, I have burned the roof of my mouth numerous times while eating as I could not tell how hot some food was.

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@kraison1979

I wold just as soon not take anything. The most disturbing thing is the terrible numbness in my mouth and the majority of my tongue. i have lost much of my taste senses along with the numbing in the roof of my mouth; needless to say, I have burned the roof of my mouth numerous times while eating as I could not tell how hot some food was.

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Hi @kraison1979, awful to deal with in your mouth. My heart goes out to you. You have to remember your brain does not get the proper signals to deal with the temperature changes in your mouth so be extra careful with burns. Without thinking, I used my left hand predominately and suffered both cold and hot burns. Since then I have been more cautious and have not gotten burns again. @kraison1979 perhaps going to an ENT(ear, nose, throat) doctor may further help. Some specialize in throat. See what is available in your area.

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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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@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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I do but it is just starting

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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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