Hello all! Recently I started having what felt like lighting on the right side of my face. Neurologist says is trigeminal neuralgia. She has started me on carbamazepine. Has anyone had this? Can you offer any advice? Thanks!
Trigeminal neuralgia : Hello all! Recently... - My MSAA Community
Trigeminal neuralgia
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Angelchef80
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i am quite familiar with what i call stabbing face pain. i don't take anything for it. it's randomly very bad, then vanishes. i've never been able to predict what will bring it on, nor what makes it stop.
I’m sorry to hear. That sounds terrible! I haven’t experienced this, but I know others here have. Hope you’re better soon 🩷
I do not have any experience with it, Angelchef80. But, I have heard people discuss it & say how painful it can be. Prayers for you!!
yes. I took carbamazepine for exacerbations of trigeminal neuralgia for years. But the TN became worse and more frequent. I had gamma knife surgery @ 10+ yrs ago and it resolved the TN 🙏🤞
I hope u get relief.
Hi there! I am here just as a caretaker for my daughter with MS. She has been dealing with bilateral atypical facial pain for about six years. Not exactly the same as trigeminal neuralgia, but the treatment is similar. She was initially prescribed carbamazepine and it worked wonders, very effective med. it is important to monitor your labs while you’re on this medication. Unfortunately, her liver function panels (AST & ALT) became dangerously high and she had to stop taking it. She continued to suffer with facial pain, ruled out every other cause, tried increasing some of her other meds under the direction of her neuro, and after her most recent visit a new med plus specialized physical therapy has been almost as effective as carbamazepine. I think trying the carbamazepine is worth trying, especially for trigeminal neuralgia, just stay on top of your labs. My daughter’s liver tests quickly went back to normal and have remained so for several years. Excellent information can be found at facepain.org which might help you. Wishing you the best!
How often did she do blood test to watch liver? My dmt is tysabri and I get blood test every 6 months.
The elevated levels were found during routine labs. She stopped the carbamazepine immediately so within a month her labs were back to normal. I suggest asking your neurologist how often to check to make sure you’re not having a reaction. It seems to be rare, so if your doctor has suggested trying carbamazepine it is very effective, as others have said. You don’t need to suffer!
What was the new med that helped her, if you don't mind sharing?
A daily low dose (25 mg) of Amitriptyline is helping in conjunction with PT for facial pain. It’s not quite as effective as carbamazepine but it’s not causing liver toxicity., thankfully. It is somewhat fatiguing, though, especially when first starting, but gets a little better over time.
I'm so glad it's working for her. 😊
Thank you! There is still some residual pain, but it definitely provides some relief. It breaks my heart to see her suffer, so we never gave up looking for something to help. No matter how tough things get, she never complains. What a lesson in being positive, hopeful, and resilient! I am truly humbled by her and all of you on this board.
So am I. This is an amazing group of people. ❤️
I've had Trigem 5 years (the mris for trigem led to my ms diagnosis) I've been on carbamazepine most of that time and it has controlled it THANK GOD. I've described the pain as a cattle prod touching a live molar nerve.
I did quite a bit of online reading and it helped me understand how differently it can affect people and that it can be managed. Everyone is different but carbamzepine works for me and I don't experience any attacks (I shouldn't say that out loud)
My first neurologist tried to wean me off carbanazepine and it worked for a while but came back. This time around, I've cut back on carbamazipene to one 200 mg pill a day and I've been fine.
Contact me anytime if my experience might be helpful to you.
Best of luck!
Al
How do/did you get past the fear of touching your face in fear of the pain?
I have Trigeminal Neuralgia. I take carbamazepine daily to keep the pain away. It is truly the worse pain ever. My neurologist is referring me to a surgeon to help with the pain. The TN was the symptom that lead to my MS diagnosis. I wish I could offer advice on how to cope with this. I’ve tried heating pads, ice packs nothing helped. The carbamazepine with a low dose of Baclafen daily is the only relief I’ve found.
I have taken baclofen for a few years now for spasticity, I am up to 80mg a day (max dose). How did/do you get past the fear of touching your face, afraid the pain might happen?
I never did get past the fear of triggers for my trigem. For me, my jaws are where the pain usually happened. Touching did not trigger pain, but turning my head, chewing and the worst was the first time I moved my head when I woke up. Until it was under control I never completely got past the fear. On days when attacks were frequent (1 every 5 to 15 minutes) I would sit still watch TV read or sleep. It took 4 months for proper diagnosis and treatment (the wait time to see specialists was maddening. One time I literally begged the neurologist's receptionist to put me top of list for cancelled appointments) . I can't say I got used to it but I did try to do things and not let it keep me totally inactive. Some days though I just tried to sleep.
What got me through was reading up on it and knowing that ultimately it could be managed. Most important was my wife whose support, comfort and help got me through.
I wash I had found mindfulness meditation back then. I meditate 10 minutes in the morning and it helps me cope. I'm 70 with progressive ms, trigem and had a heart attack this past Jan. meditation gives my 10 minutes of pure calm. There are lots on online meditation sessions, I think of them as a reset button.
I hope I didn't ramble too much,
It'll get better
Al
I don’t think you ever get past the fear of pain. Brushing my teeth usually triggers pain. I usually am able to rinse first before I attempt to brush. Eating is a trigger. It’s the worse diet you could ever be on, I’ve lost about 20 pounds due to not eating. I just brace myself for pain. It’s hard to describe the pain to my family, I just tell them it’s like laying my face on an electric fence. The carbamazepine is a life saver
Sorry
hello Angelchef80 , I have that as well. You really do have to learn specifics for your own situation. For example, I cannot drink out of a straw and I sleep only on one side. It may sound impossible however when you feel the pain coming on, try to relax as much as you can and do not tense up.
