Trigeminal Neuralgia/TMJ/MS Symptom???????

[ginak]

I have had a myriad of neurological symptoms, just as most of you have over the last 1.5 years. All neuros and MS Specialist say no MS. 2 years of mri of the brain/cervical spine, EVP, and one LP have resulted in nothing at all. 3 neuros and 1 MS Specialist have all ruled out MS. One of my neuros seem to think that this is all Post Viral or something to that affect.

I had been doing very well up until about a week ago. I woke up earlier this week feeling as if my jaw is locked. It it on my right side and at the base of my jaw. I thought it was a tooth ache, went to the dentist, who told me that there was nothing wrong with my tooth. He suggested TMJ and told me that some of the neurological symptoms that I was having could be attributed to TMJ.

Out of the last 1.5 years, no one had ever suggested this at all. I reviewed the symptom list and realized that I do share some of the same symptoms listed on the sheet. However, I share symptoms of many other things as well. I attempted to get an earlier neuro appt because it is very difficult to chew on this side. I was told that I had to wait until the 16th of December. It is important to note that in September of this year, I also visited an MS Specialist who does not feel that this is MS. Right now, I do know that I have Vitamin D Deficiency and the possibility of many co-infections. I also have very high EBV titers. No one has been able to figure this thing out.

Since this neuro madness started, I have always gotten little twinges of pain in different areas of my face, but it is usually very brief. I have never experienced any numbness in my face or anything like that. I do however get the creepy crawlies on my face from time to time. I also have a pulling sensation in my scalp, which has never been explained. The pain is a very dull pain and I usually feel it more in the mornings when I get up. It also seems to radiate down into my neck and shoulders. The pain is a very dull pain and it mostly affects me when I eat.

Has anyone had any experience with TMJ or Trigeminal Neuralgia? If so, please chime in. I don't want to be on any medications that could possibly make me gain weight. I have read that most of the treatments for TN have a side effect of weight gain. I just lost 24 lbs through eating healthier and exercising. By doing this, I thought some of the neurological symptoms would subside. For the most part, they have,. However, since last week, I have had increased tingling along with this TMJ/TN type thing. I know that some of it is anxiety and the fear of the unknown.

I was given a clinical dx of lyme disease in February of this year. I stayed on abx for about 7 months and they did absolutely nothing. No one other than the LLMD would buy the lyme dx. My lyme results were all inconclusive. At this point, I would just like to know something.....

Everyone on this forum has always been very helpful. Quix usually give me more information than my docs.

Thanks in advance,

Ginak

[SusanAFP]

PS.. I thing yoga and meditation will help too... They make feel oh so good and take my mind off the pain... Please consider them if you can.

[SusanAFP]

My chiropractor put me on a struck diet.  no sugar, no processed foods, no preservatives, no wheat, no dairy.... vegies, fruit, chicken, beef (have butcher gind any hamburger meat), fish, natural grains like quina, brown rice, (no white rice) no white potatoes, but sweet potatoes are fine, ..I believe, you will not gain weight with this diet and the gabapentyn,,nueropathy drugs if you follow this diet, and you will discover a whole brand new way of eating, and new foods - particularly vegetables that you have discarded and never considered.. it is a brand new adventure... I make fruit and vegie smoothies with Vanilla almond milk.. I throw everything in there from fruits to turnips and beets.. but always throw in a bannana.. the bannana and the almond milk help to make it sweet and it is delicious... I even throw in collard greens or kale.. everything that is nutritious and good for you.. this is my morning breakfast everyday.  It takes a while til you start feeling full on it... Also a good snack is BROWN RICE cakes... you could put RAW Almond butter on it,, hummus (check for NO PRESERVATIVES - citric acid, sobaic (?) acid, etc.)  Hopefully you can find it or just the rice cakes alone help to make up for the absence of wheat(Bread, crackers, etc.. they are processed foods and a no no... no corn chips, no salsa, unless you make it your self and you can only  have tomatoes with a protein,, or no tomatoes at all...... This is what I have learned and am practicing.. several months into and with Accupuncture, I am finally feeling better, with shorter bouts of pain... Hope this info helps.  Good Luck... I don't have all the answers and am not out of the woods either.. I continue to look for remedies,, but I do think the Chiro/HOLISTIC approach has helped.

[ginak]

Hello Fluffy,

Its great to hear that you finally got a dx. Thank you so much for all of the information that you have given me. Shockedtoday, you pretty much described some of the pain that I am having. My teeth feel very unaligned and I can't eat on this side at all. I also have a pop on the right side of my jaw when I open my mouth. I am not sure what this is, but I have an appt with my neuro on the 16th of this month. What's strange about all of this is that it started right after I had received a full facial and hot stone massage. I have to wonder if something was knocked out of joint. I can't help but wonder due to the timing of it all. Well, its frustrating having symptoms but no dx, but I know that all of you can relate to this in some kind of way. Thanks again for your replies.

Ginak

[ShockedToday]

Sorry, I forgot to mention that the parasethias (? I can't spell today for anything....lol) I have are something COMPLETELY different from the TMJ.  They are totally seperate issues.  I get tingling all over my face at different times and occasionally have ice pic headaches.  I don't think the TMJ is related to any of that at all.  JMHO.

[ShockedToday]

Hi, I have TMJ and MS.  My TMJ is pretty bad.  My jaw pops out of alignment at least once a week.  It is very noticable when it happens, as my teeth are not lined up correctly when my mouth is closed, and I can not chew because the teeth do not match up in the back to grind food.  Normally this last only a few minutes as I try to pop my jaw back into place.  This is usually occumpanied (? spelling) by a VERY loud cracking sound that other people can hear.

On occasion however, the muscles have also gotten stressed by being out of alignment (usually after a visit to the dentist because I have to hold my mouth open really wide for an extended period of time) and the pain lasts for months.  The longest being 3 months.  It was pure,unrelenting agony and I lived off of Motrin the whole time and wanted to die.  The only plus was the weight loss from living off of soup the whole time.

I really think you would know if you have TMJ as there is no mistaking the constant cracking and popping that go along with it.  Not to mention the pain and the fact that your teeth do not match up and you can't open your mouth more than an inch or so.  I think TN is something completely different.

One thing that has helped a little bit, is making sure I relax my jaw muscles when stressed.  I found that I clinched my teeth & jaw muscles when under pressure and it took me a long time to unlearn that habit, but it has helped to lesson the severity of the pain from the TMJ.

HTH

[Fluffysmom]

I also have TN, on and off for maybe 8 years.  Mine is atypical, which includes a more dull burning pain as well as shocks, zap, zings and periods of more intense pain.  Mine is on the left side, and there is no way I can eat on that side when it is flared up.

It's sensitive to cold, to touch, like chewing or air conditioning on my face, even breathing in air can cause a zap of pain. That has kept me from opening my mouth wide.

I was finally diagnosed earlier this year, basically by having other sources such as dental pain ruled out.  My dentist suggested TMJ a few years ago, but decided that didn't really fit.  I had such an awful flare this January that I really pursued an answer, and my dentist confirmed that there was no dental source of my pain, and agreed that TN was the most likely cause.  My PCP agreed, and prescribed the Tegretol.  Eventually, I received a larger prescription of Tegretol to be used during flares of other nerve pain.

My last MS specialist wouldn't discuss the source of my pain; she said she would treat it the same way, no matter the cause.  She wasn't exactly a people person.  :o)  My PCP was the one who treated it anyway!

I take Lyrica for Restless Leg Syndrome, and I found that taking extra during a flare of TN really helped the pain calm down.  I've been taking Lyrica for years, and Neurontin before that; any weight I may have gained from it was lost long ago.  Now I've gained some from fatigue and other issues like nerve pain and a herniated disc that make exercise difficult.

If a mouth guard doesn't help, you might discuss various medications with your neuro.  If its caused by nerve pain like TN, then it might be worth trying a med; you can make an effort to not let it cause weight gain.  If I gained anything from Neurontin, it was a very small amount, and Lyrica is a similar med,   I don't think Tegretol did anything but relieve nerve pain.


Best of luck,

Kathy

[Guitar_grrrl]

I've had TN off and on for about 4 years, and I can tell you, it's NOT fun.  The pain and burning paresthesias on my face (usually R side) are he!!.

Good luck in your search for answers.
Guitar_grrrl

[essdipity]

I have no experience with TN, I'm glad to say, since it's supposed to be among the most painful conditions there are.

A few years ago I had a lot of trouble with mouth, neck and jaw. Although I knew that I did not grind my teeth, even in my sleep, my dentist diagnosed TMJ disorder. He made me a mouth guard (expensive) which  I used at night for a month or two. It didn't seem to make any difference, and also, of course, didn't account for tingling and slight numbness. Anyway, as those symptoms lessened, so did the supposed jaw hinge trouble. I didn't and still don't have dysfunction of the TMJ.

You might see if you can get relief using a mouth guard. If you can, then the problem is likely to be TMJ disorder.

This discussion comes up here periodically, and many have trouble with this kind of symptom. Quite a few forum members do have TN, so I'm hoping others will be able to help you.

ess