After a year of TN, I got my MVD to no avail. (I'm now going on 5 years.) In fact, things have gotten massively worse. Soon after the failed operation I began to get SPASMS cascading down from my temple to my neck. (Woop! Just got another...) I've gone through many different periods, including ALL PAINS TOTALLY GONE, as in the Dec. '14 up to 2 weeks ago. The best remedy so far has been upper cervical chiropractic. But, now my TN's down, but the spasms have increased. The general consensus is that this stems from TMJ grinding at night. This exacerbates the TN, so instead of little shocks, I get massive spasms. Anyone else had this issue with spasms? Anyone else have TN together with TMJ?
I know there are a lot of people suffering out there, and, like me, you're hungry to get the magic bullet. Like you, I wonder why I'm chosen to suffer while others live normal lives. I do want to offer what you may or may not have heard before: How I perceive my pain is an enormous part of my TMJ experience. When I'm hurting, it can be more than painful - it can be scarey and sad and exhausting. Sometimes the last thing I want to do is to pray. But I also know that I've had major breakthroughs: I'm currently finishing the last few weeks of an Master's program in English at SF State. There were plenty of days when I couldn't speak in class because, after about two words spoken, a massive spasms would overtake me and I would have to turn away, cringing and rubbing my contracting muscles. To say that I was an ineffective public speaker is a giant understatement. I felt stupid. I felt incompetent. I felt alienated. I felt miserable. But I made it through grad school against enormous odds. And against enormous odds, I've gone for months at a time pain free. I have to congratulate my upper cervical chiro for all his help. But now it appears that my TMJ is back and this has triggered my TN and the spasms. Lately I can barely eat, drink or speak. But I've overcome this before, and I'm determined to overcome it again. So much of our victory HAS TO COME FROM INSIDE US. As soon as I begin to take responsibility and stop expecting my doctors to save me -- that's when the power is back in my hands. Personally, after 26 years of practice, I recommend my Buddhist practice. You really need to check it out: NAM MYOHO RENGE KYO.
Be well.
Troy
You are so courageous and thoughful
I live with recurrent pain 24 hrs a day and this is after being pain free for some time. Hang in there and perhaps look at some options like additional surgeries and or something else to help you mange the pain. Baclafen has helped my twitching and spasms immensely
Ps I appreciate your writing, clean and comprehensive
~E
Edster:
Thanks for your kind email and your thoughtful suggestions. Your're the first person I know of who's had spasms. Are they bothersome or really painful? I've gone periods when my spasms were coming every 60 seconds, 24 hours a day. You say you're in pain 24 hours a day? So, is the baclofen alieviating the pain somewhat? Do you have family who can comfort you? BTW, I live in Calif. Where are you? I'm praying for your imminent breakthrough. They say "expect a miracle." It's more than a cute bumper sticker. Please fight on to show us all your victory! You matter!
Troy
Edster said:
You are so courageous and thoughful
I live with recurrent pain 24 hrs a day and this is after being pain free for some time. Hang in there and perhaps look at some options like additional surgeries and or something else to help you mange the pain. Baclafen has helped my twitching and spasms immensely
Ps I appreciate your writing, clean and comprehensive
~E
Baclofen may be helpful for you since it’s both a muscle relaxant and pain reliever for TN.
There are dental splints that can alleviate the pressure from nocturnal grinding. I had one made but it didn’t help my pain. On the plus side, it has no side effects and it was worth a try. It protects my teeth from wearing down because I do grind and it is bad for my enamel. These splints are more expensive than regular night guards.
Another option to look into for your case would be therapeutic Botox. The toxin paralyzes problematic muscles and may give you some relief.
Thank you so much, Yes the meds allow me to function some what, I have strong support system that is helpful. I live in La Verne California. Its 30 miles east of Los Angeles. I’m on s combo of Tegrital,Balafen,and Effexor. All seem to help
Stay in touch and thanks for your prayers
Ed
22tall22 - Well said , your positive mindset is inspiring!
I've got spasms of the throat / jaw / neck (sometimes). I've got Vagaglossopharyngeal neuralgia , geniculate neuralgia, TN, and TMJ. I've had an hyperactive swallow reflex that makes me spasm a lot in similar areas (temple, jaw,throat, etc). I also have had , and still have a hard time talking w/out pain and/or spasms. I'm 34 days post MVD. Prior to MVD spasms, were worse - I also had very heavy excess saliva that was hard to deal with. Post MVD, they are somewhat lighter and less frequent - I've had a very rough recovery...major headaches, ears ringing, etc. My jaw , temple and ear are still major problems. I just got fitted for a dental splint in hopes that I can relax the jaw and the surrounding muscles. I hope the nerve settle down. Good advise on the Baclofen, etc above - thanks.
You are not alone with spasms! I'd also check out glossopharyngeal and/or vagaglossopharyngeal (vagus nerve) neuralgia these conditions are much less common than TN but can happen with TN as the nerves are close to each other. Spasms may be more common with these conditions.
All the best,
Eddie
Edster:
How have you been?
I was looking back on my emails to you. That was less than 2 weeks ago. I was so determined to bust through my spasms. Every day I'm inundated though, it gets that much harder to summon up the hope. In fact, I did have one great day this week, Tuesday, where, following a visit to my chiro, I felt so good, I couldn't stop grinning. I had no problem talking, and I even did some singing and guitar playing (the thought of losing this ability long term feels like a powerful motivator to turn things around). Today just swallowing my own saliva brings on spasms.
I went back on baclofen, per your suggestion. I'm on 10 mg 3X/day. What's your dosage? When I was on this three years ago, I always felt like a zombie, spaced out and forgetful; don't know how I got through those days with lesson planning and teaching. Now though, the baclofen just makes me go to sleep, never mind the zombie state. And, bottom line, I can't say I see any difference after I've been on it for a week. My dentist prescribed flexodril, too. Again, I see no change, certainly no benefits that grinding can't capitulate.
Bought a hypnosis CD to stop grinding. I've done it a couple times only and I feel great afterward, though I nodded off completely once (does that undo the good of it?). Weird thing: my class load has been quite light all semester, so I don't see what I've got to be stressed about. Most people have 40 hours of work, plus a relationship, plus kids, plus tons of financial issues. Luckily, my father has been assisting like a real saint, so I've only had school, no family, no issues. Except, of course, the looming issue of starting a new career from scratch at age 56. But, hey, people do it all the time, right? Really, besides that, I have no stress. I wonder how much of the grinding is simply the habit of muscle memory.
Hope you're well.
Edster said:
You are so courageous and thoughful
I live with recurrent pain 24 hrs a day and this is after being pain free for some time. Hang in there and perhaps look at some options like additional surgeries and or something else to help you mange the pain. Baclafen has helped my twitching and spasms immensely
Ps I appreciate your writing, clean and comprehensive
~E