I'm new here - lots of questions

Hello, everyone. I’m new here. I’ve recently been diagnosed with Atypical Facial Pain. The pain started after I had a tooth extracted. The tooth had had a root canal 3 1/2 years ago, but it never settled down. Always hurt a little. The pain got worse in July. My dentist and I had discussed over the years that the root may be cracked, but this does not show on an xray. The only way to know for sure is to pull the tooth. Well, I decided to have the tooth pulled. Sure wish I could go back 3 weeks and NOT do that. The pain started immediately. Five trips to the ER in less than 2 weeks. My new primary care physician is not happy with me about that, but when you are in pain you seek help. I’ve got so many bottles of meds that either did not work or that I had a poor reaction to that it is not even funny. My body seems to act paradoxically with pain meds. So figure!

The oral surgeon referred me to a neurologist when we found that I still had a lot of pain even though the dry socket was healing nicely. I have not gotten the pain under control yet. Still working with the meds. The neurologist has started me on Amitriptyline. Which is not doing much for the pain and does not let me sleep. I get about 3 hours of solid sleep, then I toss and turn the rest of the night. The pain is incredible. It is constant. All of my top teeth feel as though they are in a vise and being pulled and torqued. The bridge of my nose feels like I’ve been hit with a baseball bat. My cheek hurts. I’ve got pain in my forehead between my eyebrows. The top of my head hurts as does my the back of my neck. The TMJ is worse and it feels like someone has his/her hand on the effected side of my neck in the front. Strangely enough my arms ache from my elbows to my fingertips and my legs are doing the same from my knees to my toes. I can see my calves twitching involuntarily. It aches along my spine between my shoulders. And there was a slight rash on my back, midspine, on the effected side as well. I can’t see the rash anymore, but the feeling of tingling is still there. Are these symptoms typical of what you are experiencing?

Since the pain has been at a 7-8-9 for the past 3 weeks and I’m getting no relief, my significant other got me in to see a pain specialist yesterday. I probably don’t have to tell you that with severe pain going on that long with no relief I was thinking of giving up. He was worried that I would give up. The pain management doctor gave me prescriptions for gabapentin, tramadol, and percocet. I’m trying them one at a time so that if I have a reaction, I’ll know which one is the culprit. Tried the gabapentin last night. Made me very dizzy, put me to sleep pretty quickly, had strange dreams and heard words, not complete sentences, legs hurt from hip to toes, and when I woke up during the night the room was spinning. Not sure that I want to take another dose of that. I’m trying the Percocet today. It does seem to take the edge off the pain for a couple of hours. I can only take half a tablet at a time though because I’ve had reactions to other meds of this type. Does anyone have experience with tramadol?

I also wonder - others like me who have the pain as a constant boring ache occasionally like my teeth are in a vise - How do you manage to hold your job? I’m an elementary level teacher. Those of you who teach this age know that it takes a lot of patience. When you are in this much pain it is difficult to muster the patience so that everyone, me included, has a good learning day. We’ve been back to school for 7 days. I’ve only been there for 3 of them. I identify myself by my career. This has all been very hard to accept - the pain is making it impossible for me to teach. I’m losing my identity as well as suffering this incredible pain. So any tips for holding a job while dealing with this disorder would be very much appreciated. I’m so worried that I will lose my job & therefore my insurance.

I am so sorry you are suffering this way. It has been a while since you posted this. Are you still suffering this much? Unfortunately, I was not able to keep my job. I was in I.T. support for accounting systems and couldn’t think through the pain or the meds that controlled it, but that doesn’t happen to everyone. I too felt as if I was losing my identity but have come to realize that my job is not my identity and the people who truly love you will continue to love you. It takes time, but life does go on. The important thing is to do what you can to get out of pain. Work with your doctors as much as possible letting them know if what you are doing isn’t working until there is something that does some good. You may not be pain free, but might get to the point of not giving up. There are also counselors that specialize in helping people with severe chronic pain. If nothing else, go cry on their shoulder. It can help your “heart”, even though the crying might hurt. Remissions are possible with this disease so don’t give up and just know you have to manage your doctors sometimes.

Hang in there. It stinks but we are here for you!


Thanks, Debbie, for the kind words. My pain level has decreased since I posted this message. I start the day at a LOVELY 3. By noon I’m up to 4 and at the end of the school day I’m at 5 or 6 depending on how much talking I’ve had to do. Still getting used to the meds. Hoping to get a dosage and schedule that will keep me at 4 or less. I’ve also scheduled an appt with a local chiropractor who does acupressure. That’s as close as I can get to acupuncture in my neck of the woods. I have been able to return to work, but it has been difficult. I’m trying to stay positive, but when your teeth feel like they are being twisted and pulled it is hard to look on the sunny side.

Hi, I’m glad that things are better for you. You sound less stressed which is always a help in managing TN. The doctor has just told me that my whole body is out of balance, it sounds as if yours is too…muscles going into spasm and firing off other muscle groups. I’m now going to see a physiotherapist to see what is going on. Have you tried heat packs/warm face-cloths on your tight neck muscles?

I used to teach and know how demanding it is, with few opportunties for peace and calm. Can you access any type of relaxation? I hope that you stabilise soon.

I am feeling much better than when this all started. I think you are correct in your statement about the whole CNS being out of whack. Who’d have thought that one nerve could set off such a crescendo of weird feelings throughout the body! I’m just thankful that I’m able to go to work and have a pretty decent day at this point. I have a wonderful class this year and that helps a lot.

I like to listen to movie soundtracks and classical music for relaxation. I’ve also got the best significant other on the planet! He massages my feet for me when I’m experiencing pain. That is SO relaxing! I’m going to look into one of those heat pads that you can microwave to take along to work. At lunch I can zap it and get some relief while my colleagues and I eat together. I work with the most wonderful and caring women. We are a team in every way and they have been so worried about me and supportive. I just can’t say enough about how they have handled this situation. I feel truly blessed.