BrainTalk Communities 10/2006-8/2011 Archives

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-   -   burning sensation over the trigeminal pathway (

hmm_md 10-13-2006 04:51 PM

burning sensation over the trigeminal pathway
I just can't figure out which forum would be the best to pose this question. I'm sincerely hoping a bunch of people came over from the old BT since there are few posts to peruse for help as we restart things again.

Here's my situation: about 1 1/2 years ago I woke up one morning and the tip of the left side of my tongue was numb. Odd, but not alarming. My whole family has a tendancy to pinch nerves and I've lost the feeling in fingers and toes for weeks after minor trauma such as using scissors or wearing heels.

By mid-day the numbness progressed to the entire left tongue, my lower left lip, then upper, then cheek and ear and left eye. I was noticing dryness in the left eye and watering in the right (compensating?) as well as what seemed like a little drooling at the left corner of my mouth.

I went straight to an emergency room and with such lovely stroke symptoms was wisked straight back for a head CT. All was completely normal except a very high blood pressure (180/150). Subsequent BP checks have never shown it to be especially high -- maybe anxiety over a presumed stroke?

The numbness continued over the next several weeks so I was referred to a neurologist who found nothing wrong, then to a head and neck specialist who diagnosed me with "sensory-only" Bell's palsey. I have done a bunch of research on Bell's and it seems the consensus is that you can't make the diagnosis without motor paralysis which I do not have. He recommended leaving it be and letting it run its course.

Over the last year and a half it has evolved into a burning pain instead of numbness. The pain waxes and wanes. It seems to be sequential in that at the minimum the tongue hurts and next it's the lips then the cheek and so on. The skin around my left eye feels sunburnt and my left eye is often very dry with profuse tearing from the right. I have begun to notice that when I am especially stressed, emotional, or tired that the symptoms are at their peak and the burning in the tongue extends all the way down the left side of my throat. When I am relaxed it is usually just low level burning sensation in the tongue, always on the left.

Of note, when I went for elective surgery for gastric reflux problems, I awoke from anesthesia with my RIGHT face numb, the lips profoundly so. For about 3 days the right was densly numb more than the left, prompting an MRI and a boatload of blood tests, all normal. The right side resolved after a few days without intervention.

On the advice of Rose, on the old forum, I started taking B-12 supplements at high dose. There seemed to be some improvement but now it's the same as always. I don't know if that was just the usual waxing and waning or if it really helped.

Other issues for me that may or may not have anything to do with this is a presumed diagnosis of benign hypermobile joint syndrome. I have joints that slide around and have had numerous associated orthopedic injuries: 2 torn rotator cuffs, chronic subluxation of right shoulder, 3 surgeries on left ankle for fracture and tendon dislocation, fractured right foot, herniated disc L5-S1. I also have a history of migraines, controlled fairly easily, triggered mostly by hormones.

If anyone has a thought as to what this is or where I should go next I would be most grateful to hear your opinion. At the moment my tongue is on fire and my left face feels like I've been in the sun all day, I have a sore throat, but only on one side. A big part of my job is talking and, although my tongue works just fine, lots of talking seems to make it all worse.

My research indicates that TN is sharp, stabbing pains. Is it always so or are there variants?

RStapler 10-14-2006 08:18 PM

Wish I could help. Your condition has tantalizing similarities to both Bell's and TN, but also differs. Wish you luck find what you're looking for.

Bob S

crysopac 10-15-2006 08:15 PM

The doctors all told me that if it was bells then I would lose some use of the muscles on the effected side within 2 weeks of the first symptoms. If not then it isnt bells and we went from there. I get lots of numbness with my tn. Which is wonderful. I would rather have those days then the days were there is the pain. Hope you find relief soon.


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