Just Diagnosed, Curious as to what helps you?
 

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. :rolleyes:

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...................:rolleyes:


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

trying it all
 

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

increased dosage of tegretol?
 

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