Since Nov. I have had a growing number of neurological symptoms: starting with a "lazy" eye, mouth twitching, and now leading into muscle weakness and spasms with pain, all on the left side of my face. I am having trouble with chewing, too. I have been to many doctors. I was taken off many drugs, such as antidepressants, anti-epileptics, and Lamictal. I even took myself off an anti-cholesterol drug. I have had an MRI of the brain, with no signs of problems. I was diagnosed with "wear and tear" of the spine--lower back, and especially some bad discs in the back of my neck. I just had nerve tests of my arms and was found to have carpal tunnel in each wrist. Next week I'm scheduled for leg-nerve testing. My dentist says I'm having "muscle spasms," not TMJ. My neurologist is puzzled. He did give me a muscle relaxer (Flexeril), but the pain in my cheek still comes and goes and I still have chewing problems. But my eye is better and my mouth only twitches after I smile a bit. The neurologist says he might give me another brain scan at some point, since I might have a "progressive" problem. I'm scared. What could it be? I've even been tested for MS, myasthenia gravis, etc. Anybody have any ideas? Meanwhile, I'm going back to my neurologist as soon as I can, since the flexerilisn't solving the problem. he says he has another drug he can try...Help!
My neurologist gave me 0.5 mg. Clonozapam 3x a day for the exact symptoms you are having, and I also have the back problems you have. It really helps. I couldn't live without it. When you see your neurologist, ask him about this. Hope you feel better, I know exactly what you are talking about, and it seems like it will never go away, but once I took one pill, it stopped, and has not come back in 3 years.
Thanks so much for responding. I was feeling upset that no one was able to offer any help. I am glad to hear that clonozapam did the trick. Alas, however, because I have bipolar disorder, that is a drug I take 2 times a day--and have been taking for years. I did just get a prescription for trileptal from my neurologist--and my psychiatrist approves of my taking it. You give me hope, anyway, that such drugs can take care of the problem! Best wishes, and thanks again.
My little sister who is 12 is told she has muscle spasms that cause the ache.
it all started in 2006 when she got a dark spot on her cheek (bruise) out of no where... and doctors couldnt diagnose her and then saw something abnormal on her bone through a scan... it was osteomyeltis...
but not that infection is gone but she is in excruciating pain, and this pain lasts about a month or two before it hides for a few weeks. currently she has been in pain since sept. 5th narcotics and muscle relaxers are not helping her... my parents and her have not been able to get sleep. we finally got an authorization to go to UCSF to that facial pain clinic, hoping that they might find out what it is... after much research it really does seem like a trigeminal nerve...
but she also has pain in her eye, jaw, cheek. has trouble using her jaw... and pretty much drinks tylonol like juice from a bottle and flexeril, codeine.....
i cant wait to find a doctor that will not give up on her. it's been 5 years already and after about 1/2 a year they give up.
It could be what they call Dystonia. I suffer from what's called Cervical Dystonia which is severe and uncontrollable muscle spasms of the neck. There is also a form of Dystonia which effects the face and other parts of your body. This might not what is wrong but it won't hurt to research the subject.
RSD (Reflex Sympathetic Dystropy)
Cervical Dsytonia- severe muscle spasms in the neck
What's the reflex dystrophy thing, Rayefaye? I've noticed and other people have, too, that the painful side of my face has been sort of sunken in. But the Trileptal is helping, I think. Plus I've had two laser treatments so far for the trigeminal nerve on my left side of my face. The eye is acting up a bit (again) with some pain and blurriness.
(Note: enough rain now in our area--our roof is even leaking!)
Update: I'm just having a little trouble with my left eye now--just some pain now and then and occasional blurriness. My eye doctor says he see some signs of developing cataracts, some change in my vision which could mean a need for new lenses, and maybe I can get rid of the prism lens, since my eye is not crossing anymore. I see him next month for my yearly exam, so we're trying to wait for that, so insurance will pay.
My neurologist diagnosed me with atypical trigeminal neuralgia and put me on Trileptal. After a number of weeks and an increased dose of it, the facial pain is diminished--just every so often. Alas, though, I'm still having trouble with chewing--have to try to eat things that don't need much work and cut stuff up into small pieces.
I was out on mestonin for a bit to check out the possibility of myasthenia gravis. Didn't help--in fact, I seem to think it was during that time that I started having the trouble chewing and then the facial pain!
I've been having problems starting around November of last year. I don't think the doctors have totally decided my ultimate problem, though. My neurologist says he might have another brain MRI on me at some point, still suspecting I might have some sort of "progressive disease." I had one last December and nothing showed up. Yes, something does seem to be wrong with my left facial nerve, but I think my nervous system might have a more compicated problem. Yes, I am thankful that the Trilpetal has helped--do still have some pain sometimes, however. I sure hope your sister's problem can be fixed soon. It's particularly distressing that she is so young, whereas I'm a "middle-aged" lady. You are cetainly a sweet sister to be trying so hard to help! : )