1. < Neuropathy

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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queenie2030 | @queenie2030 | May 13, 2023
In reply to @janetleela "This sounds so similar to what I've been dealing with since February of 2020: idiopathic tingling/numbness,..." + (show)
@janetleela

This sounds so similar to what I've been dealing with since February of 2020: idiopathic tingling/numbness, and sometimes a sort of sore or tight sensation, over my right cheek and the right half of my tongue. I've had two MRIs at this point, bloodwork, and a CT scan of neck/head, and still have no idea what's going on. I also opted to not take gabapentin since it's not painful, just, unsettling and strange. Have you made any progress in your search for answers?

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I did not have any numbness or tingling with Trigeminal Neuralgia. The pain was severe and non stop and I could not chew any food. I ate only liquids or very soft foods. The pain made me cry. Pain pills did not help it just took weeks to get better. Pain was in my jaw and teeth running up to my eye. I hope you find relief soon.

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gina5009 | @gina5009 | May 13, 2023
In reply to @sdgoddard10 "Hello. I was diagnosed with intractable facial nerve pain in April 2022. My pcp prescribed oxcarbazepine...." + (show)
@sdgoddard10

Hello. I was diagnosed with intractable facial nerve pain in April 2022. My pcp prescribed oxcarbazepine. When that didn’t work, he referred me to a neurologist who prescribed gabapentin. That helped occasionally. Then the neurologist referred me to a neurosurgeon who performed a radio frequency ablation. At first I first, I felt great, then I started to have all of this swelling on the left side of my forehead and around my eye socket. Sometimes the swelling is excruciating and I had to go to the ER to relieve it. Anyway, there are times when I start to give up and lose hope. Right now I’m just waiting to see what happens. There are times when I feel like I’m in prison for a crime I didn’t commit.

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I have been diagnosed with Trigeminal Neuralgia. When it bagan, it was like getting lightening bolts of pain in my jaw to the center of my lower teeth. I could not talk, eat, or have the skin on my mouth touch my mouth. As soon as I called my doctor he knew immediately what it was. He Prescribed Gabapentin which did not help at all. We tried three more medications, but I could not take any of them because of side effects. He prescribed pain killers (which were of very little help) and referred me to a Neurologist. I could not get an appointment for one month. I did find that if I rubbed my gums with Ambesol (baby teething medicaton) I could get enough temporary relief to be able to eat. The Neurologist Prescribed Pregabapentin and we tried several different doses (becuase it makes me very sleepy). The good news is the pain is great a deal less . I am afraid this is something I will have for the rest of my life. I can only hope it does not get any worse. I have been told there is surgery, but this sometimes leaves some nasty facial paralysis. I sincerely hope, that the Pregabapetin might be of some help to you.
Gina5009

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jfn | @jfn | May 14, 2023

Hi @janetleela
It is a battle to get the Trigeminal Neuralgia diagnosis, but stick with it. The dentist that 'caused' it, recommended that I see a neurologist, asking if it could be TGN, even though it was on my left side. As mentioned I was given a different medication. The medication was to calm the nerve down. I did not like the side effects so, I stopped taking the medication. I knew it relieved my unhappy nerve, so a fall back plan.
I then went in search of a treatment. After many years and way too many $$$$, Cranial Sacral therapy worked to an amazing degree. I still am triggered, but I have hope that the episode will and can be controlled. Considering my TGN is triggered by sound, scent and light, my treatment has let me walk out the front door and enjoy life, knowing there would be triggers, and I could handle them.

Yesterday, I survived very loud music and a rainy day, progress!
My neuropathy from standing, is still not happy, but it will get there!
Please feel free to ask me questions, I will try to help, but I may not know the answer, and that is why we have the knowledgeable @johnbishop !

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