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trigeminal nerve pain

Posted by @jwhite64 in Brain & Nervous System, Dec 3, 2012

Hi, I suffer from trigeminal neuralgia pain. It started in 1994 when I woke up one day with a strange burning in my mouth. That continued for 6 years before I had a diagnosis. The doctor tried me on amitriptyline, commonly used to treat depression, but it did not help with the burning. I saw many doctors about the problem and no help. I also had strange nerve pains throughout my body which I had diagnosed as fibromyalgia. I had frequent headaches and a doctor said that I was having migraines so he started me on Imitrex. That did help the severe head and facial pain on my right side of my face. When I was finally diagnosed after my own research on the internet, I saw a neurosurgeon and he confirmed the diagnosis by looking at a CT scan. I immediately was scheduled for MVD surgery so that I could have relief. The pain was increasing and interfering with my every day life. I was a mother of three young children and could not enjoy anything. The surgery went well but I did have a complication of spinal fluid leakage and had to stay in the hospital for a week.
The pain did subside for a while but I would have the head pain once or twice a month instead of every day. It has been like that until recently. I noticed when I was washing my face that I started having stabbing pain on the right side of my face. I was worried that it was coming back and I was right because I have had the pain every day since then with talking, brushing my teeth, washing my face and kissing my husband. If anyone has any treatments that could help, please let me know or if you just want to talk about it so we don't think we are alone with our suffering.


Posted by @soledadandrade, Dec 4, 2012

Hi jwhite64:
I am not a physician or an expert on Trigeminal Nerve Pain but Mayo Clinic does have some information online about Treatments and Drugs for Trigeminal Nerve Pain as well as other information. Please see link below:

I hope someone in the Connect Platform Community helps you with some personal experiences, but If you are interested in requesting an appointment to see a Mayo Clinic physician in FL, AZ or MN - please click on the "request an appointment" link on the upper right hand corner of your screen.


Posted by @jwhite64, Dec 6, 2012

Hi Soledad Andrade, I did try many of the drugs listed and could not tolerate any of them. I opted for the MVD surgerry 8 yrs ago and it did help until recently when I started having more severe pains in my mouth and face. Thank you for letting me know about the link. i am unable to see any dr right now because i lost my full time position with benefits and I have no insurance right now. I have just been trying to breathe through the pain. Let me know if you have any other suggestions.
Thanks, jwhite64


Posted by @soledadandrade, Dec 6, 2012

I am sorry to hear your situation. I might suggest this other link with some information or support groups/ that will connect you with others going through similar situations link: . Maybe there is a support group in the area you live in.


Posted by @jwhite64, Dec 7, 2012

Hi, Soledad Andrade, thank you for letting me know about this other site. I will look at it and see what is suggested. If there is anything else you can think of to do, I would appreciate it very much! Thanks again, jwhite64

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