This pain occurs above my right top jaw from my corner tooth upwards,randomly and catches me unawares - so painful it brings me to tears. It lasts about 5 minutes and to compensate for this pain, Ipush very hard on the gum - strange I know but it psycologically makes me think of this pain rather than the neuralgia pain, I have never known pain like it. My GP has prescribed Carbagen 200mg tablets 3 x a day. When it first caught me unawares, I was mid-flight going to spain and put it down to the pressure of the cabin. So each flight I prepared myself - even having a medicinal brandy... Then out of the blue, shopping one day - " oh know it's back again"... Does anyone else suffer with this dreadful pain? I am a 60 year old fit female.
As she said above, there are other medications available to help you with the pain. Trileptal worked well for me, except for an intolerable side effect. Now I take Baclofen. But there are a number of other meds that could help you. There is no need for you to suffer. Like she said, call your doctor if the medication is not helping your pain.
Had pain for years it runs from the left rear of my skull over my left ear up to my brow back to my jaw line all the way to the exact center of my chin.
the neurosurgeon used verapamil er 240 mg.
it works most of the time. Lead up to diagnosis was pure hell had teeth removed, salivary glands rooted out ,most GP did not have a clue. I was actually yelling at
the last doctor when the neurosurgeon overheard talked to me and told me the symptoms were text book and apologized for the whole clinic.
So sorry to hear of your diagnosis :( My episodes are more like lightening strikes rather than a continuous pain, but horrible nonetheless. I am currently on Tegretol ER, which I have to take as a maintenance dose (200mg/day). When I have an episode, I up the dose for the duration, then bring it down again. My neurologist is great here in Ireland, but because the condition is rare, he was quite open to me seeing another specialist, which I did last year. I chose to see a neurosurgeon who is on the board of the TNA as my assumption was he would know the most about the condition. He recommends I have the MVD surgery, but that will take a lot of time & effort here in Ireland as no one here does the surgery enough to make them competent in my eyes. In the meantime, the Tegretol ER seems to be doing the trick, plus I have Reiki twice a month. Before that I had tried regular Tegretol & Lyrica, both to no effect.
My advice would be to find a neuro who is familiar with the condition and then explore all your options - both surgical & pharmaceutical with him/her. Best of luck to you.
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