New and Nervous
 

Hi, everybody! I've been lurking for about a week. You seem to be a very supportive group. I've got an appt on Tues. with a neuro to discuss my facial pain. My rheumy believes it is TN and I agree.

I am having flashes of nerve pain in my check, diagonally leading towards the corner of my mouth. It is spreading and getting more frequent and a little sharper. The pain isn't bad at this point, and that may be because I have been taking Lamictal for simple partial seizures for years. But, I fear the pain because I know its potential.

Yesterday, for the first time, I felt a flash in my upper teeth on the same side. And the day before that, the top corner of my lip was tingling on and off for about 10 min, and I felt a dull pain flash on my cheekbone near my eye. Geez, I'm scared. Rarely, but it does happen, I feel the nerve pain on the other side--diagonally toward my mouth.

I have other neuro problems including the seizures, severe insomnia, peripheral neuropathy, and unintentional tremors that come and go. I just want to know what is going on! What can I expect from this new neuro that I will be seeing. The last time I saw a neuro was years ago for the seizures--no other problems back then. For the last 5 years, my GP has been prescribing the Lamictal for me.

Thank you for reading...

bluemom

Hi there I am not an expert on trigeminal neuralgia but I have just had mvd for geniculate neuralgia which I'd similar just a different branch of nerves involved. Certainly from your description you sound like you sadly have the signs of tn. I don't know why so few people are replying to posts but I just wanted you to know you are not alone and I'll be thinking of you when you have your appointment. Please let us know how you get on and what way forward you have. Read through all the posts you can cos the advice on meds is second to none.
Stay strong and positive if you need to talk feel free to pm me

Thank you for your compassion, Todd. I have been reading a lot. Are the stories on this site the worst of the worst, or are they typical? Do they reflect what is in store for me???

Your story is familiar
 

Wow. Do you have RA?

I actually have RA and felt my first facial pain about 2 years ago. had 4 root canals in 3 teeth before being diagnosed with TN. I went thru the anti seizure meds and they eventually quit working and pain continued to escalate. I eventually had 2 MVD surgeries to correct the TN. they did find a compression.

just wanted to say, don't panic. many people are treated with TN by either drugs or surgery. there are many horrible stories also, but I have learned that you must stay positive and take each day or hour at a time. will be glad to answer any questions you may have and give you more details of my story. just let me know.
also there is a facial pain association TNA site that has a lot of info and can also help you find a Dr that specializes in facial pain. that is on of the keys. you must find so done who deals with this a lot, not just occasionally. that can be hard. I have had to travel for appointments and surgeries. also, I have also found that you need to get at least a second opinion or third. do not go with just one evaluation. it can be hard to diagnose properly.
good luck and let me know if I can help.
Easygoing

Dear Bluemom,
Please do not scare yourself with what you read - if you worry about tomorrow llike that, then you are wasting today. All of us are very different, as are our outcomes. Your TN will be unlike any other person's. As will your treatment outcomes. Some people live a full life with this condition, some are more affected - you just don't know. Many people go into remission for many years. But please, do not worry yourself needlessly with things that are NOT happening to you - that will just make you sick with worry and won't help anything - in fact, stress will exacerbate your symptoms. So please, just try to take it easy and wait to hear what the neurologist says. Surround yourself with a comforting energy, and shake off that fear - it will help you to do so. And keep talking to us, we will try to help you as best we can with any questions.
Hugs,
Lily

Hi Bluemum they are a fab bunch on here sorry you have the dreaded TN Try not to get to scared by all you read hun we are here for you. xxx

Thank you easygoing, mylastnerve, and supermoo! I was dx'd with TN today and prescribed Neurontin generic. I go back in 4 weeks. Plan B is Carb(something) if Plan A doesn't work. Doctor also ordered an MRI with contrast. Not sure if I'm willing to put the money out for it though because I had a negative MRI without contrast in January.

Thank you, mylastnerve, for talking me down. After I read your post, I took a deep breath and made a conscious decision to look on the positive side--I found a great neuro, I have a prescription in hand, and right now the pain is very, very mild.

Easygoing, funny you should ask about RA. I do not have that, but I do have Lupus. It's a real disappointment to have so much going on, isn't it? I'm sorry that you have RA, and I hope it's under control. Do you know if autoimmune disorders are related to TN at all?

bluemom