I have trigeminal neuropathic pain secondary to dental work. I have had this for about 7 months now. I posted this topic on the general discussions board, but I am hoping to hear from some of you who have had ATN for a while now. I have had severe muscle twitching of the muscles of mastication (muscles that make your jaw move- the trigeminal nerve innervates these muscles) and I know that at least with other types of neuropathy, this is the beginning of muscle wasting/weakening.
Have any of you experienced this muscle twitching or weakness of your jaw muscles? Also, the trigeminal nerve plays a role in hearing so I’m wondering if anyone has experienced any hearing loss. I’m really struggling with managing my pain and it is throwing me into a depression. Something I never thought I would experience. I appreciate your responses.
I'm sorry I've never experienced that. The only thing I have is pain.
Liz, I have had TN2 for 5 years and have not experienced any muscle wasting or twitching if that helps to put your mind at ease. Would a muscle relaxer help? My dr. prescribes flexeril for my back injury and it seems to help a bit when my pain hits sometimes. Also, iirc, you are on gabapentin.but I cannot remember if you have tried amitriptyline or nortriptyline. After reading of so many members having success (particularly TN2) reducing the stabbing behind the ear/back of the head I asked my GP for a try. Sure enough, it reduced my very painful headaches to maybe once a week. Topomax has also helped many with migraines but I could not tolerate that drug.
Ok, now you're freaking me out!! I've had ATN for a long time, wrongly diagnosed and numbness only up until a few years back when I first experienced periods of TN. At the moment ( and for the past 15 months or so) I've had numbness and aching.
Here's the kicker; several times over the past few months when I'm trying to fall asleep the muscles around my jaw and the affected side of my month have gone crazy!! Jumping around violently for a few seconds. It's a horrible feeling!! It sounds a lot like you. Eeck!!
Catwoman - totally not trying to freak anyone out! So sorry for that... I'm just trying to put my mind at ease. I haven't read about anyone experiencing these things on this forum, yet.
Here is the article if anyone is interested: http://ukhealthcare.uky.edu/uploadedFiles/physicians-providers/Physicians/Smith%202011%20TNO.PDF
I definitely could have misinterpreted some things just because I'm so anxious about everything going on with me. I'm trying to not worry about the future, because there is nothing I or any doctor can do about it, but it is proving to be very difficult.
catwoman said:
Ok, now you're freaking me out!! I've had ATN for a long time, wrongly diagnosed and numbness only up until a few years back when I first experienced periods of TN. At the moment ( and for the past 15 months or so) I've had numbness and aching.
Here's the kicker; several times over the past few months when I'm trying to fall asleep the muscles around my jaw and the affected side of my month have gone crazy!! Jumping around violently for a few seconds. It's a horrible feeling!! It sounds a lot like you. Eeck!!
Thank you for your response, shadow. I have taken baclofen every once in a while and it does make a difference - not something I want to take on the regular though because of how sleepy it makes me. And I am on gaba as well as nortriptyline. The nortriptyline, I felt, helped a lot. More than gaba alone. I am at 75 mg and still have pain, but I don't want to go up on the meds because that doesn't leave me much room to titrate up after that.
shadow2 said:
Liz, I have had TN2 for 5 years and have not experienced any muscle wasting or twitching if that helps to put your mind at ease. Would a muscle relaxer help? My dr. prescribes flexeril for my back injury and it seems to help a bit when my pain hits sometimes. Also, iirc, you are on gabapentin.but I cannot remember if you have tried amitriptyline or nortriptyline. After reading of so many members having success (particularly TN2) reducing the stabbing behind the ear/back of the head I asked my GP for a try. Sure enough, it reduced my very painful headaches to maybe once a week. Topomax has also helped many with migraines but I could not tolerate that drug.
Liz, this is one you might want to start a similar thread on in the regular TN forum as it will get more visibility. Quite often some of us have similar symptoms which may or may not seem unrelated to TN and we find a way to communicate it to our doctors. Also, Red is likely to pop in with ideas as he is constantly reading medical journals.
Shadow, I actually have posted this in the general discussion but didn’t get too many responses.
You know I was just thinking that a couple of my meds have given me weird side effects. Check those out.
Hi Liz, I have ATN as well but have not encountered twitching or weakness in muscles. It’s hard to not get depressed and discouraged but don’t give up finding a treatment that will help. I take relatively low doses of several meds and have a Peripherial Nerve Stimulator and the pain is manageable. Take care!
Hi Liz,
I occasionally had muscle twitches with my ATN, but not frequent. Muscle movement, like everything else, is controlled by nerves. And muscle twitching can be a sign of muscle fatigue, or it may be related to nerve dysfunction in some way. I can relate to your struggles with depression. My pain - like most of us - was unbearable & many times I thought of putting a gun to my head. I was finally able to find some relief with acupuncture, then with gabapentin first, then Lyrica & amitriptyline. While everyone is different, I believe the literature indicates that amitriyptyline sometimes has a better effect (on pain) than nortriptyline for many people. Just don’t give up & know that we’re all in this together. Hang in there!