Hello, this may be my first post in this group. I have a history of TN. In the beginning it was spontaneously triggered, and also triggered by the lightest touch. The MVD helped with the touching issue, but the residual pains lasted awhile and was controlled well with Tegretol and Baclofen. I have been off of those medications for quite some time and been doing VERY well. But two days ago all of a sudden the shocks came back! Eating caused it, stress triggers it. Ugh! Problem is I am actively trying to get pregnant and I cannot take the medications! Is there any possible advice someone can lend me?? Besides winning the lotto and quitting my job to avoid stress? Lol!
This may be my first post here also. I’ve had tn since 2006. On baclofen, gabapentin, and Carbamazepine. Fell and had surgery to the brain on the right side, which is where my TN is now I am recovering from the injury to that nerve during surgery. I am so sorry for what you were experiencing, especially wanting to be pregnant. Seems like that would put a lot of pressure on you too. A joyful thing and hard too. As you say my best results for pain relief have been low stress. when I can be quiet for periods of time, it seems like the nerve relaxes and can become pain free for long periods. A year or so or more. I should mention to that the ketogenic diet has been a help. Good luck to you. There are many of us here, who do not reply, but know what you are going through and sympathize.
Hi😊. I’m wondering if you practice breathing exercises to help with the stress. It also helps me calm down when the pain is bad. I can talk you through it if you don’t know about it.
I also find warmth helps with the pain. I actually wrap myself in my heated throw blanket with it right beside my face (sometimes I can’t let it touch my skin but if it’s close I still benefit from the heat).
Gentle hugs to you
Thank you so much for replying. It gets kinda lonely when you’re surround by people who don’t understand the condition and the shocking pains you get. It’s almost embarrassing. I notice the less stress the less pains as well! I’m taking it one day at a time because I’ve been pain free for so long. I’m hoping that will be again!
So funny you mention heat! I been using my heating pad at night. Because my surgery spot being extra sore lately. And the pains. It helps me fall asleep. Anyone that had the decompression surgery have pain near surgery site?? I’ve already needed a 2nd surgery a yea
R later to remove some hardware that became loose. I joke that I had some screws loose. Lol. But I’m wondering if I should follow up again about this discomfort. Surgery was 2016. And hardware removal 2017. There’s still some hardware in there though. I was not aware of that until an X-ray.
I will have to try the breathing exercises. I was also told by someone I met today knowing I was trying to conceive, was to try yoga as well.
Stress is unfortunately a trigger. Some of the non-medication things that help me are laying on the couch and “tenting” a long heating pad over my face and in the early years I would lay affected side of face down in a bathtub of water. Meditation helps sometimes, create your own mantra of five words to repeat over and over, either out loud or in your head; this helps to not only calm you but also brings your attention somewhere other than the pain. Your mantra should be either something calming or something that brings a good memory or feeling to you.
(I hate to tell you, but having kids is stressful, imagine a newborn that has colic and cries and cries, or one that has feeding issues. Picture night after night of not enough sleep…yikes, that’s going to bring pain on)
I had a 2nd MVD in 2012 & luckily still pain free. Occasionally I’ve been getting a tinge for a few seconds but that’s it.
I do have much more sensitivity in the surgery site in the last year. I don’t know if I have any hardware but it’s very manageable . Sometimes it’s too painful to sleep on that side. I was told it could be numb after the surgery & think it might have been for several years.
I felt blessed when I found this group back about 2010 to have support of people that understood the pain, helped to not feel so alone. I also found the doctor that did my 2 nd surgery through the facial pain organization.
Sending good thoughts and blessings to you all.
Hi. I had MVD surgery in October 2022. I do have some pain at the surgery site but I thought this was normal considering the type of surgery. I also get a sharp pain in my scalp although I did not have surgery there. I don’t think it is TN related but is a result of maybe how my head was restrained for the surgery. I don’t know. But since surgery, I have very little feeling on the right side of my face, which is weird. I also lost some hearing in the right ear. My cerebellum was bruised in surgery and these symptoms my be temporary. Also, my balance is off and I feel dizzy quite a bit.