I was diagnosed about 3 weeks ago after having CRAZY pain. I started noticing it in December after a nasal surgery and at first I thought it was my teeth, then gums, then one of the dentists suggested it was in my nerves. I had to wait almost two months for a Dr. appt and he immediately diagnosed me with TN and referred me to a neurologist. My neurology appt isn't until 6/17!!! I was taking Motrin and Vicodin and at first and it somewhat seemed to control it, but now I'm thinking it was never controlled, the attacks/episodes weren't as long, frequent or strong as they began to get when I noticed none of the medicine was working. I called my regular doctor on Monday in tears, I knew I couldn't wait until 6/17 for any stronger pain relief. He called in a prescription for Carbamazepine, 100mg 2x a day. I've taken four doses so far and this morning was my first pain free morning in months! I can still feel dull pain, the pharmacist said it'd take 5-7 days to fully kick in. My name is also Kelli and I have had three natural childbirths. The only thing I can compare the pain to is contractions!!! I've never been shot or had a limb sawed off, but I was thinking maybe it was on that level! On Tuesday night I almost blacked out from the pain while I was giving my kids a bath. I had to knock on my teenagers door and motion for him to go in there and watch them while I ran downstairs to get Motrin (which pretty much did nothing); the room literally started going black! I don't know what to do now, waiting on my MRI, Xrays and neurology appt...I can't live like this forever, these past few months have been HORRIBLE!

I've been diagnosed since 09 and I remember clearly what you're going through. I had multiple prescriptions and injections until I found what worked for me. The pain/medication combination is different for everyone. What works for me may not work for the next person. I'm currently taking carbemazepine and baclofen. I also take amatryptaline at bedtime. I have ATN or typeII TN which is 24/7 pain with heat and swelling. I started with injections from the pain clinic which helped at first while I added the other medications that finally worked for me. I know this is not probably what you wanted to hear but once you have the right combination days will be better. The medications don't come without side effects and they may alter your normalcy. I hope you find what works for you fast and don't give up... If you can't see your neurologist quickly there are a few books that may be helpful. I know you feel helpless and your body goes through the fight or flight response with pain but please try to hold on help will be coming soon. I hope today is better than yesterday.

My husband was diagnosed in June 2009. Has had good days and bad ones. At first, he was in so much pain, he yelled, hit his head on the wall, tried to pull his ears and hair off his head. We went to the ER several times before one doctor realized what was going on and gave medication that eased the pain. We have been through, MRIs, Cat, and other test. To make things worst, the company he worked with at the time, punished him, suspended him from work, because he went to the ER without giving them 48 hours notice of taking time off from work. The last trip to the ER was when I thought he was having a stroke or something like that. He tried several medications such as tergertol. This made him a zombie and did little for the pain. The last cocktail that seem to help the best was gabapentin, 6 pills a day and 4 amitriptylines at night before bed. He still did not return to work because he operated factory machines but had some relief. After a while he did start getting some skin irritation and started slowly reducing the dosage and getting off of both. By this time, the worst pain had disappeared but still some pain present. He started doing some herbal remedies to clear up the skin problem and decided to try tolerating the mild pain. TN is such a life changing thing. As of this date, my husband has not work a day outside of the home. he is 58 years old and the place he did work has even shut down and moved away. He would have never been able to return due to noise and stress triggers. We have applied 3 times now for disability, 2 without any legal help and now with a advocate, being denied both times before. People see him, don't see the pain. They think he is just lazy and wants hand outs. I see the pain. The doctors have commented that his "short" in the nerves is not visible on the scans and if they could find it, they might be able to operate and fix it. Now we only see a primary doctor, not seeing a Neurologist because it seemed she just wanted to "push the pills", see him in six months and call if things got worst. She also would not claim he could not work, just needed to find something outside the home to do. Yea, right, 58 years old, worked 21 yrs at one place, trying to find a occupation that would give someone like my husband the opportunity to work. My husband now does not leave the home property, has established that some of our ducks and chickens are therapy birds and come, sit with him and help with the pain. It is always there, not as severe because he keeps himself from the triggers. We never go anyplace together, no groups or crowds, no yelling, loud noises. Nothing is the same. He is now suffering from anxiety/depression and this can cause him to break down, cry, and just feel totally worthless about himself. He was once a very active man, a runner, involved in daily exercises, fishermen, camper, craft person, reader. He served his country as a Marine and was tough. Now he has been reduced to a sit at home man, carrying for a 6 ducks and 10 chickens. If he did not have the birds, he probably would be curled up someplace, not doing anything. You say your past few months are horrible. They are and until you find the right medication or relief, you are going to have many more. I don't want to be mean or rude, but living with my husband, I have experienced the long road he has been on differently, but the same. I wish we could do things we did, go place we have went. I married him for sickness and health, so the road I travel. I go to work, come home, look at him and know the pain is there. I wish there was something that could be done. We have almost lost our home, lost almost all our friends and family. No one wants to be around a weird old grumpy man. My husband said if some well know person had this, someone would start studying it, splash it across the TV, events would be held, research done. I pray for all that find they have this, relief and some pain free days. They are hard to find but when they do happen, enjoy. You are not the only one suffering but have it worst. All family members suffer one way or the other. It changes everyone.

I hope by now you have had some relief. I was diagnosed with TN in January. I was put on Tegretol, 2 pills 2x day. I had to keep upping the dose. Went up to 4 pills 2x day but was like a zombie. Now I take 3 pills 2x day and have found complete relief. I know in the beginning, I thought the pills would never work, but it took about 2 weeks,then no pain. The doctor now wants me to try to cut back to 2 pills 2x day, but it seems to scary to ever think of having that horrible pain again.