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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Good. Please keep us posted.

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@kraison1979

I do still have the address & phone # of where I Had my surgery done. Thanks for the advicee- I will try to get an appointment with a neurologist up here – now that I am living in NY.

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@kraison1979 sounds good. I hope you find a good neurologist to help you. Remember, the more information you give the neurologist the better he or she can help. So gather as much of your records as you can leading up to that surgery. The new doctor may do further testing for guidance. @kraison1979 hang in there. I have palsy of the trochlear nerve as a result of my ruptured AVM. The palsy is causing my double vision. Initially I lost my taste. It took over 2 years to get that back. It was totally unexpected. I don’t know how that happened. At the time I was on the Keto diet. I know the diet has neurological benefits. A friend who had tremors used the diet for weight loss. He noticed his tremors stopped. After a couple of months he got off the diet. That is when the tremors returned. I also had tinnitus prior to my AVM but I noticed that also disappeared. I can’t say the diet definitely attributed but I was pleased. Too bad the neuropathy stayed 😔.

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@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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