I have had TN for the last 5 years…An oral surgeon did it to me…He also killed someone and put another in a coma…I was told I’m a lucky one because I’m alive despite the hell I’m living through…I had MVD brain surgery in hopes to fix my messed up nerves…The doctor found them and cauterized them…He said that they were spliced so badly like cable wires…But there’s a chance he could not get them all…It’s been a year and the pain is there just maybe not as intense…I get maybe 20-100 episodes a day of feeling like I’m being stabbed with a thousand icepicks while being electrocuted n burned at the same time…I’m on a wide list of meds that deal with nerves, pain, depression and vitamins…like 20 different ones but here are just a few: Gabapentin, Baclofen, Lamotrigine, Carbamazipine, Cymbalta, Ocycodone, & Klonopin…It is WAY 2 much but it dulls the pain…I get my liver n stuff checked all the time because the doctors are concerned of the affects…Not to mention the side effects. I try my best to keep positive and I am very active with my doctors and specialists who all live off island from me…I live in Hawaii…I also know that stress REALLY makes it more intense & more frequent episodes…I try my best to not have stress but sometimes it’s near impossible…I’m seeing a neurologist who’s thinking of botox…I really don’t wanna do gamma knife…My neurosurgeon said he’s leaning towards another MVD…I’ve looking into every alternative maybe even participating in a study…What do u guys think?
I think you are a fighter and that you will get through this.If there is a study I think that if you have an opportunity to research it,it might be a good thing.
I find that being near the water and hearing the waves calms my face down.Can’t happen all the time .but anything that reduces the meds for me.
I take medical marijuana.The oil helps me sleep.
Have you tried any compounded topical meds"I have one with ketamine that helps a bit.
Why are you so against Gamma Knife?
I, too ,was taking a whole bunch of vitamins.I started getting nausea from them.I had to move to a Greens Plus drinking mix.
Hoping that you find what works.Let me know if the ocean waves help calm your nerves.
I am very sorry for you to have this very bad experience. I have a good friend in Surbuban Detroit who also has severe TN from a botched root canal( another reason why I would never have that done!). He had to take disability from GM and now functions normally on his strict schedule of morphine prescribed by a pain doctor. His only side effect is constipation which he controls with Miralax. He takes ms contin and other morphine for breakthroughs. I only offer this as a last resort. He is fortunate because he has not had to increase his dose over the years. Morphine when used as a pain control is not addictive.
I’m sorry to hear about your distress, this is an extraordinarily difficult experience. Just to clarify, you said this was caused by a failed oral procedure, but a neurosurgeon performed MVD? Theoretically there should not be a connection there, as MVD is based on the theory that vascular compression of the trigeminal nerve at the brain stem is causing the issue. Oral surgery would suggest the damage is in the jawline region. Using the traditional definition of the procedure, I don’t think MVD will be very helpful for you, as the damage is at another part of the nerve. The risk to success ratio in your case is probably not very favorable.