Trigeminal Neuralgia Support Group

OMG, I hope you are feeling better. I am such a noob at this, but I felt like that Thursday night (my arm isn't much better). My neuro asked if my shoulder hurt last visit if that helps at all. I was too out of it to ask him how he knew that. But yeah, I have sat here before, refusing to move to avoid pain. It won't kill you is what I've been told....
*hugs*
I know when I was really sick before we saved money and frequent flyer miles to see a specialist somewhere else. Is that a possibility?

see if you can get your primary care dr to prescribe you tegretol. For me - it worked w/in 24 hours when nothing else did. It's almost llike a litmus test for MS - meaning if it works, you more than likely have TN. From there you should see a neurologist. Good luck to you! Diane

Hi dear,

There are lots of different causes and sometimes TN resolves itself, but generally that's within the first six months. I got pretty depressed when six months came and went and my TN got worse instead of better.

It could be that you have something going on in your neck or shoulders that is causing the TN, or whatever the pain is. There's a chance it is not TN.

An MRI of your neck and head would help, but I don't know how much money you're willing to throw away. They are so expensive.

Tegretol did nothing for me. You can contact the national TN association people and they will actually talk to you about your symptoms and help you figure out if you have TN or not. (free)

Maybe you could start by writing an email explaining your onset symptoms and what it's like day in and day out. Sometimes they will call you and talk to you on the phone. They are angels.


http://www.fpa-support.org/contact...

XOOO

I've been there and I am so sorry. Please go to endthepain.org. There are so many people there that know so much and can put you in touch with a specialist in your area. I emailed them and finally found Dr. Whitworth, a neurosurgeon in Dallas that seems to know what he is doing. Shelly is the person I email a lot and her email is on that site. Just dont give up. With this disorder you will always need to know more than the doctors. I highly suggest buying the book "STRIKING BACK! THE TRIGEMINAL NEURALGIA AND FACE PAIN HANDBOOK"

I agree with 'dlee'. TEGRETOL was a life saver for me. I honestly wanted to give my doctor an organ, or anything for helping me through the pain.

Yes, I feel paralyzed when it hits. It literally stops me in my tracks.

I have had neck and shoulder pain but come to find out it was hurting because during the attacks I was tensing my neck and shoulder up as a defense mechanism due to the pain. The tensing up made it hurt.

everyone's pain is different because everyone's body make-up is different. my TN pain was so bad i wanted to die. i curled up into a ball on the floor and cried and that made the pain worse. i put ice on my face and at first it helped and then the pain got worse. i tried sips of luke warm water and this helped. in fact, i had to do sips of water every few minutes for several nights in a row. i did not sleep for one minute. i tried putting cayenne pepper on my gums and instead of helping, this irritated the nerves more. i did put some bio-freeze cream on my cheek around my jaw and this did help. i think it confused the nerves for a bit. I also avoided the triggers: brushing my teeth (i rinsed with warm water after eating and brushed only unaffected sided), avoided extreme temperature changes and covered my face in the wind, did not lay on my face, wore my bite guard to avoid teeth grinding at night, canceled all dentist appointments until further notice, visited a neurologist, then visited a top neurosurgeon in my area (go to a teaching hospital in your area), and avoided all excessive stress. If you need more help with any of this, add me as a friend or feel free to email me for more information. I hope you start to feel better fast. The pain is excruciating.

I don't find my pain "paralyzing," but I've had years of experience. I'm kind of proud, and a bit arrogant in fact, about being able to be in AGONY and show a happy face. I know there are some people: my doctors, close friends, some family, and my cat (who is occasionally burdened with sudden joking, yet sincere, whines of, "I'm in paaaainnn") who can know about it, everyone else? Nah.

I seriously recommend visiting some of the helpful sites listed, or getting some literature on it. It took me more than a year to get into a doctor who even knew a shred about it. During that time I suffered a lot. I wasn't scared, or angry, just in so much pain almost every hour of the day. I did, however, soon discover touching my face AT ALL was a no. I did some of the cayenne rubs as well--they failed for me in the same way--but find it more abusive, than helpful, to touch the face. Every time you touch your face it's damaging. There are no trigger points, so much as trigger areas, and these areas are extensive! The worst places are above your lips and chin. Everyone is surprised by this since the pain seems to start closer to the ear, closer to the nerve. But it's true.

You need medication, no a CT scan. If you are terrified of a tumor, than an MRI would be best. A CT scan isn't very effective for that sort of thing. However, the ratio of those whose TN is caused by tumors is low. If, however, you're concerned about possibly having MS and this being a symptom, then again, you need an MRI. MS is a syndrome that, as many of the people here will tell you, can be tricky. It often has some telltale signs that should have shown up far before TN. I would concern yourself more with getting medication like Tegretol.

And although everyone's pain is different, I don't think the head and shoulders thing is at all normal. I eventually began suffering from chronic neck pain, but I associate that with chronic pain. My TN is not here and then gone for days, weeks, or even months at a time. It now shows up pretty much everyday. Around the time of worsening, my neck pain came up. It's a completely different kind of pain too: a sharp throb and ache. Whereas my TN is burning, stabbing, and can feel like bad dental work was performed on me as well.

I hope things get better for you, and that you find a more resourceful doctor. Good luck.

I get the same type of pain with flareups. You are definitely not alone!!! I was just at the ER last week and they gave me a whopping dose of Demerol that barely touched the pain. I was told that, unfortunately, TN pain is very difficult to treat. Now I have swelling in my jaw and severe pain near one tooth, which is possibly abcessed - who knows? I contacted my dentist - whom I now have an incredible fear of - I'm so afraid anything dental will trigger an attack. We're just taking pic's today. I want to make sure that it's the tooth and not the TN. Has anyone else developed a crazy fear of dentists with the TN?? What about facial swelling? I noticed other posts about facial swelling, but they all looked older.