Trigeminal Neuralgia - facial nerve pain

[Dymphna19]

Hi I was diagnosed in 2019 and I am on watch and wait. Does anyone out there have symptoms of facial nerve pain? I was prescribed carbmazapine for my facial numbness/tingling but now it has got worse. Just wondered if anyone had any tips to deal with the pain?

[Rfc9]

Hi you should go speak to your doctor that's the medication l am on it may need the dosage to be increased.

[Dymphna19 in reply to Rfc9]

Hi it got steadily worse. In the end I couldn't talk or swallow without electric shock/taserlike pain. My son spoke to my CNurse specialist who told him to take me to A&E. Long story was there for 14 hours waiting around for help, to be told to double my dose of Carbamazepine, did that. Didnt work, after few days husband rang for me, back to A&E had intravenous fosphenytoin which solved pain but gave me double vision and tinnitus. Pain is gradually coming back. It's called trigeminal neuralgia. The tumour hasnt got any bigger but is pressing on nerve.

[Rfc9 in reply to Dymphna19]

Sorry to hear that hope you are better real soon

[Rowanrainbow]

I have TGN as an unexpected post- embolisation (procedure I had before craniotomy) complication. Cranial nerve 5 V2 to was damaged or disturbed somehow so I woke up with numb mid-section of my face, which has progressed to some sensation over last 3 mth; but not a nice sensation that’s developing! I am not on any medication and I’m hoping it’s a phase towards regaining the feeling in my face…but I have pins and needles/freezing/stabbing/tingling constantly. Noticed definitely gets worse if I am tired. Is this similar to how it feels for others?

[Dymphna19 in reply to Rowanrainbow]

Hi at first my pain was numbness tingling , like after going to dentist, but unfortunately at moment getting electric shocks type pain. My advice to you would be to tell your nurse contact or doctor about it to get some help if pain is bothering you.

[Buddy56 in reply to Rowanrainbow]

Your experience is almost identical to mine. And much like your pain, mine starts out manageable in the morning and by mid-late afternoon it’s unbearable. I had a meningioma removed in March. My trigeminal nerve must have been cut or damaged in the process. At first my face (mid section V2) was completely numb!! About 2 months later I started to receive shooting, stabbing pains, sensitivity to cold, I couldn’t even stand with my face directly under running water in the shower. This has progressed into a terrible, constant burning sensation That has only gotten worse over time. I have been given multiple medications By several different neurosurgeons, None of them have really been able to help me with my trigeminal neuralgia. All they keep doing is changing and or increasing my medication. I feel like there is nothing to help me. In a few days I am having a procedure called a sphenopalantine ganglion block, they will inject a steroid and Lidocaine directly into my face to numb the nerve. Hoping it works and hoping you’re not headed down quite the same path! Best of luck! I wouldn’t wish this on anybody.