Trigeminal Neuralgia Community
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605458 tn?1539232408

12 years after microvascular decompression

Twelve years ago I had microvascular decompression of the left trigeminal nerve. I was 26 years old. I had mostly sharp shooting pain episodes, and an underlying constant burning pain. The surgery got rid of the pain. This year, the pain came back, only this time, the constant burning episodes were more distressing than the sharp shooting pain. Neurontin seems to have dealt with a lot of the stinging, shooting pain and bug crawling sensations, but I still get days of burning pain. My questions-
Can trigeminal nerve pain feel like it is behind or around the eyeball?
Is it unusual for trigeminal nerve pain to change from being mostly sharp and shooting to constant burning along the path of the nerve? Also new is when I do get sharp shooting pain episodes I often get them in my teeth.
I was later diagnosed with bipolar disorder disorder and was on anti-seizure medications for many years. Could it have been masking the return of pain after the MVD? Because I changed to lithium and the nerve pain started showing up.
Can the weather trigger pain? My burning pain episodes, which are very uncomfortable, come on days or the day before stormy weather. Perhaps the pressure does something to the sinuses that then trigger the pain? Because I did trigger an episode once when I sneezed and felt sinus pressure. I am certain it isn't sinus pain, though.
23 Responses
467070 tn?1224628977
I know this doesnt answer your qustion , but how did you develop Trigeminal nerve pain ?
605458 tn?1539232408
I am not sure of your question. When I had surgery they found two blood vessels wrapped around my trigeminal nerve. They put padding between the blood vessels and the nerve. So, the theory goes that the over the years the blood vessels rubbing against the nerve wore down the covering of the nerve that keeps it from going off improperly, such as telling my brain that a breeze from a ceiling fan is actually a painful event.

Now, how it arrived for me the first time was one evening when I was in my mid twenties. I was outside a theater, it was winter so it was cold, and when I looked up at the marquee I squinted to read. I suddenly had a sharp shooting pain in my temple and moving on the my cheekbone area. It was excruciating and repeated over and over, second after second. I grabbed my head and went to my knees. It kind of freaky for the strangers around me. It freaked me out too. It lasted for a long time, that first one. Hours, but the intensity decreased. That was how it all started. This time around it is actually the constant burning pain that is my biggest pain. I read that it was thought that over time it often changed from sharp shooting primarily to the burning type.
467070 tn?1224628977
I have the burning all day long in my right side gums, it hurts like hell, and my teeth , I can feel  a " tapping " sensation underneath my fillings ., as if the nerve is going to explode . Cold air blowing on my teeth ......forget it, its now fall in New York, and I dont know what Im going to do. This is a nightmare that I cant wake from.  Any kind of vibration on my teeth will set it off worse . I have a butcher dentist to thank for this one . The nerve is so inflammed / injured ? damaged ? that since March my glands have been swollen also .........Nice Right ?
It feels as if I have suffered a first degree burn in my mouth . Explaining this to people ....they'll never get it . ( unless they get it )
605458 tn?1539232408
No, unfortunately, they won't get it, they CAN'T get it. In my case, I basically explain FIRST, no, it's isn't a headache, a migraine, or something a narcotic will relieve. Second, I give them the quickie version-

"Where the nerve that feeds my face comes out of my brain, well, I have two blood vessels wrapped around it and after years of those blood vessels rubbing, they wore the protective barrier that covers the nerve so that now, it is hypersensitive and sometimes interprets messages wrongly, such as interpreting a breeze as something more serious. It sends out a message to my brain that it's something warranting a pain signal. I take a medication to help suppress and slow down those pain messages."

In your case, it would be "When I had a dental procedure my nerve became irritated and it now misinterprets some things as painful, such as a cold drink."

If you haven't read 'Striking Back', I recommend it. It will go over just about every kind of facial pain- including what you describe, and their treatments in detail. It is put out by the Trigeminal Neuralgia Association.

From what I recall, damaged nerves can take their time healing. The nerve might never heal completely, or heal but still give you problems. I don't think there is any way even a doctor can give you time frame, just help you get through what you are experiencing at the time and hope the nerve does heal eventually.
Avatar universal
HI I've had facial pain now for 4years from a dental extraction/infection/retained root/infection/surgery to close the hole.  I've tried meds, acupunture, botox, nerve blocks, cold turkey and chronic pain rehab and now my last resort is a neurosurgeon consult in Oct.  I hate how I feel on these meds and I try to take the least so I can continue to work so i'm in pain all the time at various degrees.  My hope is that someone can tell me where or what can be done.
605458 tn?1539232408
I hope you get that. A neurosurgeon is probably who will be able to give you the most information.
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