Hello! I am new here, and just diagnosed after about a month and some change of misleading "thoughts" from other doctor/dentist.

About a month ago, I started noticing what I thought was dental pain. Went to my dentist, took xrays - they showed nothing. Came home, had a horrible weekend!! I was SO furious with my dentist for MISSING something, and not treating it.

Went to my doctor, he said "Oh it's sinus, here are some antibiotics and ultram". What is weird? 2 days, of use - the pain went away. I thought Oh okay, good. Shoot! Don't I wish!

A week later, the pain came back. Called my doctor - he said, OK, here are some more antibiotics. Did that for a week +.


Went for a 2nd opinion to a new doctor - who is now my hero. He diagnosed me within MINUTES. It was amazing. Granted, I did have a complete "history" of what Id been going through, how long my "attacks" I called them lasted, where I was experiencing them, how often in a day they came, what brought them on, etc.



OK so........

I am being treated with Tegretol 200mg twice a day. The past 2 nights have been really really bad for me. Ive barely slept. My pain seems to be worse when I lay down. I can lay for about 5 minutes, and the pain starts. Same with a recliner or "overstuffed chair" - about the only thing I can do is, sit in a straight back chair (dining chair) or stand up. Not that it goes away completely, but so much less intense, and less often.

I finally called my pharmacist at 4:00am, and said Can I take one of my Clonazepam with this medicine? He said Sure. So I did, and about 5:30, I fell asleep.

Went to my "new doctor" this morning, and told him I couldnt do that anymore. He agreed and gave me Buclafen or something, I think it's a muscle relaxant, and he said I could take my Klonopin with that @ night, if I needed.

So....... We'll see.

What helps you guys?

Have you ever had where it mostly effected you in bed, laying down?

Seems that is a strange thing...................


Nice to meet you all!! I am doing my best to keep my spirits up, as I feel it has to be the best treatment of all.

I hope I can continue that.

My pain always gets worse when I lie down and it has kept me from sleeping when I'm in a real bad way. I suffered with the condition for a long time before knowing what I had and these bouts dragged on and on. Once I got diagnosed and started treating with meds, I still notice that my pain increases when I lie down, all though quite a bit of it is masked by the meds. I was also told my problems were sinus related and the last bout prior to a diagnosis, I had a root canal done and was still experiencing pain. Back and forth to the dentist and endodontist so many times it wasn't funny. I was pretty much begging them to pull the tooth and they refused and sent me to a facial pain dentist. He injected some long acting meds into my jaws and that was the first good night of sleep I had in four months.

I have tried a bunch of different meds and I don't do well with the anticonvulsants and antidepressants, as I'm too sensitive and get the rare side effects. I currently take a regular course of baclofen and Ultram ER. I supplement those with klonopin when the pain is really bad, but I don't take it on a steady basis.

Nice to meet you as well, although I'm sorry you are here.

Take care and I hope your pain eases up, Ellena

Hey haveaheart!
I am kind of new here too. But I have had TN for 13 years and I had it for 2 years before I knew what it was. Once I found out what it was it was SO bad I had to have an MVD almost right away! MVD is a microvascular decompression of the nerve. They wrap teflon sponges around the nerve so the artery that is wrapped around my nerve can't touch it. That's what's wrong with me, I can't say what's touching your nerve. Anyway, I take Nortriptoline, topamax, depakote, lyrica, sometimes Baclifin, Tylonal 3 with codien, oxicodone and I think that's about it. When it's real bad I go to the ER and get a few shots of Diloted it doesn't help the pain but it helps me so I don't care and so I can just go to sleep. Oh I also have Valume so I can sleep when the pain is bad because I get so stressed out that I freak out and that just makes the pain worse. I pace around the house like a scared animal because I don't know when it's going to zap me again and it drives me crazy, Hope some of that was helpful to you. Oh My MVD lasted 10yrs and so I was pain free for those years and it just came back this sept. and sept - dec was pure hell! But now it is in remission again. YIPPIE
Pam

I just recently was diagnosed but have suffered for a year with no idea what it was. Look online for info. Most of the stuff I have read indicates that laying flat will make it worse, so maybe use two pillows. Use a heating pad on the site of pain and also taking a very hot bath and soaking that site will help as well. I am taking Lycria but not feeling much help. I was on a muscle relaxer which did help but made my panic attacks much worse. I hope to find something that will help> I also taking ultram at times or motrin 800mg. I hope you find some help. Look online. there is a lot of info. Don't give up. angie

I'm new as well. I had undiagnosed TN for three years. Didn't experience significant problems when lying down though. Started on 200mgs of tegretol a year ago and have had to increase since then to 600mgs per day.

Have you tried an increased dosage?

Stewart-tn