trigeminal neuralgia and TMJ? - Trigeminal Neuralgia Message Board

plkelly · 06-03-2004, 04:20 PM

Does anyone here have both trigeminal neuralgia and TMJ? I have had this for 9+ years, and right now it is the worst ever--can't talk, swallow, sip coffee without lighting striking my jaw/face. I'd be interested to hear of any treatment that has worked for anyone else with this. I went into a splint for the TMJ and was pain-free for almost 10 months--the longest ever--but it didn't last as I'd hoped. I see the orthodontist (he thinks the teeth are just moving and temporarily throwing my bite off again), an acupuncturist, a chiropractor, and my regular doctor. She is switching me from Tegretol to Neurotin. I also take Lexapro for the generalized anxiety caused by this never knowing when the pain will strike.
I still have plans for every evening this weekend--I hope they have some soup, cuz I haven't eaten anything solid in over a week. But I refuse to cave in to this and become a recluse. Usually my pain is a little better in the evenings, so we'll see how it goes. Let me hear from you.
Patsy

Ann123 · 06-03-2004, 10:31 PM

well , I am told I have both. Ouch!

I wear a splint and take Neurontin and Lexapro.

I have only had this for about a year and a half though.

still very confused with the diagnosis. interesting - my pain is worse in the evenings.

what kind of splint did you wear that helped? did you ever get tooth pain with this?

take care, Ann

plkelly · 06-04-2004, 08:07 AM

I forgot to add that after the splint I moved into braces. Got the uppers in September and lower ones in January. I hope the orthodontist is correct that this is just caused by the teeth moving and it will go away again.
I think mine is worse in the mornings because I clench so much at night. And sometimes in the afternoons or evenings, I can almost feel something change in the joint--like it's slipped into place--and I can talk and am pain free.
I have a lot of confusion about my diagnosis, too. At first they told me just TN, then it was just TMJ--now they're saying both.
My husband has a theory that my body sort of 'hung on' until I was through all the stress I've had since last August. First my mother got to the point where she couldn't live by herself anymore, and I had to go and get her moved out of her house. My sister passed away in October. That was really a hard time. My best friend was in intensive care and almost died from West Nile Virus. I've made several trips (400 miles) to see my mother, who has been in the hospital a couples times since I got her moved. This last time I went to take care of the sale of her stuff and getting the house emptied for the buyers. I was planning on just relaxing this summer--my favorite time of year.
Do you do any alternative or additional stuff like yoga or meditating? I ice mine down a few times a day--seems to help for a short time.
How much neurontin do you take?

Sorry to be so wordy! My troubles all began after dental work--a crown that I don't even believe I needed was placed wrong and threw my bite off. The pain started a day later. My bite had never been good, but it just couldn't adjust to anymore.

Let me hear your story.

Ann123 · 06-04-2004, 12:09 PM

HI,
So the braces were like Phase II of your TMJ treatment,then? I hope your ortho is right about the teeth just moving and your pain will lessen up soon.

I do clench at night as well, the splints just don't seem to stop that! My pain gets worse at night perhaps after talking, chewing, etc. It hurts in the morning but then as I use my mouth it continues to get worse. Like the days I work.

I think my diagnosis depends on what doctor I see that month, lol.

I think your husband's theory is probably at least partly true. Stress has its role; and when we can't relieve it that is worse. Plus you were probably not sleeping well. Sorry to hear about all your bad times. Hopefully you can relax soon. I love summer too. Being from the Midwest, we cherish these few months of warm weather.

I actually do better with moist heat, not ice. I just did 9 treatments of PT with ultrasound therapy and manual shoulder/neck massage that was helpful.
I am just starting yoga. I think I will like it. Learning to relax is never something I thought about before but I am working on it.

Neurontin I take 2400 mgs. Why are you stopping the Tegretol? Is it losing effectiveness? I've heard that it really works well. My neuro wanted to try something with less side effects first. But I don't think it gets the pain that great. He is adding Topamax to the mix. All these meds. Scary stuff.
Went to the dentist for a cleaning today and the hygientist slipped me her jar of Lidocaine topical to try.

Interesting yours started with a crown, Mine did too. Was that crown 9 years ago? wow, I am really discouraged to hear that. My bite is not so good either. I wore braces years ago already. But gaps are forming so the teeth are moving.

Does talking and chewing aggravate your pain? My neuro thinks its odd when I say that yet I read that all the time on TN boards. I wonder about him sometimes.

take care, keep me posted,
Ann

plkelly · 06-05-2004, 09:01 AM

Yeah, the crown was 9 years ago. I went to his new associate instead of waiting for my regular dentist because my son was getting married and we were having the reception here. I didn't want to put it off and risk pain on the special day. How often I regret that. I early on quit that dentist after 17 years--when I kept going back to see what was wrong, he told me one day that he could fix everything below my ears but couldn't fix things in my head above my ears--implying it was all in my head! After knowing me for 17 years. I was furious and never went back there again.

And yes, the braces are Phase II--I debated all the pros and cons before taking this step, I was pain free for so long when I started I expected it to go on. I really like this guy--Moshiri out of St. Louis. He comes here to Springfield one week and month and had some marvelous results. By the way, where are you in the Midwest?

What is Topamax? A muscle relaxant? I think I need one, but when I went to my doctor Wednesday (took my husband along since I've been unable to say more than a couple words without that searing pain kicking in), he asked about one and she said since I was starting two new meds, that was enough for the time being. I read on the TMJ boards about a "aromotherapy relief" muscle relaxing cream at Bath and Body Works that works pretty well, and am going to pick up some today.

I'm switching meds because I had been off the Tegretol for 8 or 9 months, and when I started back on it this time it really upset my stomach. And it seemed like I had to take so much. Early on it worked quite well for me--I actually tolerated it well and had no side effects besides a little dizziness when I first started. The blood tests you have to have are not that frequent and didn't bother me. I was still working then, and it was a God-send. If the Neurontin doesn't work I'll try switching back. Right now I'm taking both because you can't stop the Tegretol immediately--you have to wean off it. Have a lot of pain--can only eat liquids, can't say more than a few words at a time--really worse than I've ever had. So I'd guess you'd for sure say that talking and chewing aggravate it! I went to a neurologist once and he asked me to describe my pain, and I did, and he said "you have TN, that'll be $60" and sent me away. lol Really, about that fast. We even sat in his office and talked--didn't even make it to an exam room. I went to the Shealy Institute here--pretty famous in alternative circles--and was most dissatisfied.

Since I can't talk and I really like to, I guess I substituting keyboarding.
Patsy