Trigeminal neuralgia, or Tic Douloureux, is a neuropathic disorder of the trigeminal nerve that causes episodes of intense pain in the eyes, lips, nose, scalp, forehead, and jaw. T...
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Having doubts about diagnosis
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I first had problems with my teeth in Dec. '05. I had a root canal and once the Novocaine started wearing off, it was solid pain. I felt like I couldn't open my mouth, I didn't want to touch food, etc. I wasn't concerned--I just had a root canal!--and anticipated a less painful experience soon. It didn't really happen. I'd wake up in less pain, but as the day progressed and I was forced to smile and talk, I was in so much pain! I lost my job, which required both of these activities in excess and I had episodes where the pain was so intense I couldn't remember how to do simple tasks.
After a year, I saw a neurologist, was diagnosed with TN after multiple dental x-rays showed no abnormalities. The thing is, when I do read about TN, sometimes I say, "That sounds like me!" Other times, I think it doesn't. They go on and on about "face" pain, and as for me... my pain always feels underneath my cheek, in my gums and affecting my teeth. Before I was diagnosed, when the pain was particularly bad, I was somewhat obsessed with after using the bathroom, and washing my hands, looking up and making sure that for some reason my face was still... intact. Part of me almost longed for seeing damage--something I could fix. I felt like it was "broken." My teeth felt smashed in. Also, a lot of times I can touch my cheek and me okay, but if I touch above my lips, or the side of my nose, or my chin it sets off the pain. Yet when I see my neurologist he's always touching my cheek and asking what that does. But the areas I personally avoid are the ones formerly mentioned. Rather, my biggest issue with my cheek is getting this sort of pins and needle sensation. I don't like doubting my diagnosis, but I am a) YOUNG b) wanting to feel reassured before I take more drastic steps than taking Tegretol. Everyone keeps discussing "episodes" and while I have times when the pain is just excruciating, a lot of times it's the worst when my upper teeth "set down" on my lower teeth. But almost always is this forever prevalent sensation that someone is gently poking my gum with a needle. My gums are healthy, my teeth are fine, but that's what hurts... My jaw doesn't click when I talk, either. I'm just frustrated and overwhelmed. Posted on 12/21/07, 01:12 am |
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Everyone has their own story of TN. Mine is a weird sensation in my face. I don't get too many of the severe episodes. I can eat but have to be careful to eat on the opposite side. Yours is different but definitely sounds like TN. There are various treatments for the problem. I refused to take Tegretol due to some onf the side affects. I am on Neurontin and it after getting on a very high dose, I am pretty much under control. But it took a while to get there. Do some research and work with your doctor. He/she will know all the ways to treat you and will have some answers for you. But do some research to find out what may be best for you.
Becky 
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I'm realizing this more and more as I read some other posts. You read books, or websites, and they describe TN in a (hah) textbook sense as if this description is the only one there is.
I was on Neurontin initially, but found no relief from it. They dosage was upped and I still found no relief. Right now I am on max (I think?) dosage of Tegretol and still am finding in pain very often. It really becomes painful after I eat hard foods (nuts, raw fruits and veggies... you know the HEALTHIER THINGS) or talk.
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I had pain on the left side of my face mainly in my teeth but it would spread from my left eye and temple to my nose and jaw. The pain would come on with talking, singing, smiling, eating, and air. I could not let any air hit my face at all. My face would hurt so bad that it would be sore to touch after the pain did stop.
I took Trileptal and got up to 900 mg a day. Then my lips and cheek started getting numb. The dr said I was maxed out but that it was ok to continue taking it. There are people who take a lot higher doses than that and are ok. After a yr of taking the trileptal it didn't help me anymore. I did try taking Lyrica, Dilantin and Neurontin with no luck. You just have to keep trying the different meds to see which one works for you. I had the microvascular decompression surgery on Nov. 14th and I'm on the road to being pain free. I still have the occasional mild pain but the dr said it will all go away with time. But there isn't any severe pain like before. I am off the meds now and doing good. A good dr will be very helpful. The second neurologist I went to tried the different meds and when they didn't help he then sent me for surgery. I wish you lots of luck. LHawn
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Have you had an mri"?
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Yes, I had an MRI. The only thing it showed was a bit of a shadow on the opposite side of where my pain is. It looks like some scarring from a concussion. I had a fall as a child, and was too young to diagnosed properly, but likely I suffered a concussion at that time. The same shadow, at the same size, was present in an MRI I had done a few years ago (for vertigo and chronic headaches). So, besides that, it's clear.
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that sounds like mine - when it started, it was mostly in my gums. I switched to a pain sensitive toothpaste and most of the pain went away - only to come back later in my cheek, and in my eye. I wish you luck and best wishes as you try and get help.
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