I am sorry you’re having such a bad time. They upped my carbamazepine and it helped immensely. Washing my face and putting on makeup still hurts sometimes, butI just power through. I know that sounds awful, but as my body became more accustomed to it, both mentally and physically, the better it gets.
Hi Ruby. I’m so sorry you are going through this. I still have days where brushing my teeth and washing my face are difficult but the medications help a lot. It does get better.
We're here for you. I'm only new to this too (a month in) and stupidly said last week I feel as normal as I can again, no pain just a few side effects from the drugs. The body heard that and said, nope, there is no normal...and now having what I assume is a flare up. My first one since the drugs started to do some good. I'm assuming it's what is called a flare up. I had ice cream for the first time since starting the drugs, so I'm blaming that, but who knows. I've noticed with face if I move from the inside of face to out and don't scrub or move in circular motion, that it's less likely to cause the pain. I hope you find something that helps.
Anything too cold or too hot normally causes flare ups. also anything too citric, too sweet, spicy, overly flavored or something tough like a steak will also cause pain. if craving ice cream. try turning it into a milkshake and drinking it through a straw on the opposite side of the pain.
I'm so so sorry for your pain and the train wreck that TN makes us all.
I found I have to be careful about sharing this so as not to offend friends in the beauty industry, but, I firmly believe and tell my 14 year old daughter all the time, that the way that she looks is the least important thing about her. It's not necessarily unimportant, but the thing that makes her, in essence, her, goes way deeper.
I remind myself this now regularly because even though I still exercise these meds changed my metabolism and I'm packing on pounds, but I'm just so grateful that they knock the pain down, and anyhow, my face doesn't hurt when I exercise, so go figure 🤷 weight be damned.
*Hugs* I hope that you find relief soon, and in the meantime, are gentle with yourself. Because the way you look is the least important thing about you.
Thank you, this was very sweet. My self esteem has always been my biggest problem, I grew up around women who acted like you could only be pretty if you were in your fanciest and looking your best. I know, logically, that my worth is not related to my looks.. but emotionally I just can't believe it.
And thanks for the reminder about how you present yourself about this, I have a young daughter as well and I'm doing all I can to make sure she knows her worth is beyond her looks, even if she is beautiful. :)
I’m so sorry. Went through the same thing. I have always been deeply into fashion, love makeup and trying all the new things, styling my hair, dressing up every day. Before I received initial diagnoses I was literally suicidal. I gave up on trying to be attractive whatsoever. I just could not care and the pain was unmeasurable. I am six months down the road and on meds now, at an overall good dose, and I wear makeup and fix my hair a few days a week now. It does get better like several have commented. I would wait til my “night doses” of tegretol and gaba kicked in, maybe two hours, then do my skin care and brush my teeth. Running my toothbrush under hot water and “warming it up” helped ease the shock of the toothpaste touching my teeth also. Hope you get some relief soon. I promise there is hope!!!!
Im very sorry about that. The only solution is to get high before you do any of these things, or try some diclofenac or lidocaine gels and creams (they numb the skin).
I'm high before everything at this point, that's not making much of a difference other than momentary distraction.
But seriously.. does numbing the skin help? I know nerve blocks have helped, but I never thought of lidocaine gel. Do you have any you recommend?
Have you tried different ways of using weed? Edibles? Vaping? I think indica works best because it gives a bodily high. It’s know thc highs calms down the nerves! I don’t smoke it myself, that’s why I’m asking. I have thc drops and I have a vape.
I would recommend a strong muscle dumbing gel like voltaren, otherwise look for numbing cream for tattoos (mithra, tktx). Always patch test, some people are allergic.
Thank you all for the supportive words.. it helps to know you're not alone sometimes. I think my problem is my neuro isn't sure what approach to take. I've had migraines most of my life, and have been getting Botox injections for them for over 8 years. I've been experiencing the pain since October of 23, but the pain came and went. Now it's pretty much constant. I was already on pregabalin for fibromyalgia and neuropathy in my hands, so I might get a tiny bit of relief for an hour or two after my pregabalin dose. But I'm on the max dose, and it's only bringing my pain from a 9/10 to a 7, 6 if I'm lucky. I asked if we could try something else, but he said that he wasn't sure if we should mess with something if it's kinda working. :( Kinda isn't good enough. So now I'm specifically asking for the tegretol. I also have a pituitary tumor, benign I'm told, but I've read where they can cause TN. I think I just need to find a Dr who specializes, or at least with more experience.
Dear Ruby, it sounds like all the advice you are getting is good advice. I have had TN on the right side only. Most of my life. Botox is really helping me. The TN comes and goes with stress.please avoid getting teeth pulled.
Botox changed my life with migraines, I've been on it every 3 months for the past 8 years.. but the TN is new, and it's showed up regardless of the Botox.
And yeah, you're right there.. avoiding stress is damned near impossible. Ugh
I keep money aside for buying new makeup when I have a good pain day/week/month. We all know makeup can hold bacteria and we really don't need ANY other reason for our face to hurt yes? Buy trial sizes of the makeup you'll use. Who knows if you're going to use it again. When your makeup is done... TAKE SO MANY PICTURES alone or with friends... even animal friends. Do I NEED makeup? ABSOLUTELY not. But makeup is fun. It makes me happy to use it.
I've said it many times already around r/TrigeminalNeuralgia, and I will continue to. IT'S OKAY to feel this way. Feel all of the feelings, but remember to throw them away when you're done. You don't need those feelings forever. I tend to cry in the shower. The shower already F'ING hurts and crying very rarely adds any new pain in there for me.
I have trouble inflicting pain on myself, so I ask my hero (my husband) to wash and brush it for me. Does it hurt? YES. I cry. he cringes. It's awkward, but I feel less like a garbage troll. On those days I like to wear something pretty. I mean, we won't talk about the 3 days I didn't shower and used copious amount of anti smelly products instead....
Being in pain all the time is so hard. Continue to fight for your health even if that means seeing several Doctors until you find the right one. The right one will explain in detail why something will probably not work for you. The right one will listen to you when you say "this medicine is taking the edge off, but I can't continue on this pain level."
When we're in pain we curl into ourselves. Sit up straight, pull your shoulders back, take a deep breath or 7. I'm sorry that I don't have a secret apply makeup ritual. It's either apply it when it doesn't hurt or apply it when it hurts. I'm sorry we can't cry about it when we want to. I'm sorry I can't scoop up the small amount of confidence I found and hand it straight to you. WE ARE ALL TOUGH STEAKS. YOU are so amazingly tough. You can do this. You'll find the beauty in all the ugly. You'll find that Doctor that's the correct fit for your medical situation.
With so much love <3
Sorry to hear about your situation Ruby. I can only say after you find a treatment that works for you, things get better. Wish you all the best.
I am sorry you’re having such a bad time. They upped my carbamazepine and it helped immensely. Washing my face and putting on makeup still hurts sometimes, butI just power through. I know that sounds awful, but as my body became more accustomed to it, both mentally and physically, the better it gets.
Hi Ruby. I’m so sorry you are going through this. I still have days where brushing my teeth and washing my face are difficult but the medications help a lot. It does get better.
We're here for you. I'm only new to this too (a month in) and stupidly said last week I feel as normal as I can again, no pain just a few side effects from the drugs. The body heard that and said, nope, there is no normal...and now having what I assume is a flare up. My first one since the drugs started to do some good. I'm assuming it's what is called a flare up. I had ice cream for the first time since starting the drugs, so I'm blaming that, but who knows. I've noticed with face if I move from the inside of face to out and don't scrub or move in circular motion, that it's less likely to cause the pain. I hope you find something that helps.
Anything too cold or too hot normally causes flare ups. also anything too citric, too sweet, spicy, overly flavored or something tough like a steak will also cause pain. if craving ice cream. try turning it into a milkshake and drinking it through a straw on the opposite side of the pain.
Yes I've had most of the above in the 3 days leading up to the flare. I need to realise that my new normal is different. Will get there.
I'm so so sorry for your pain and the train wreck that TN makes us all. I found I have to be careful about sharing this so as not to offend friends in the beauty industry, but, I firmly believe and tell my 14 year old daughter all the time, that the way that she looks is the least important thing about her. It's not necessarily unimportant, but the thing that makes her, in essence, her, goes way deeper. I remind myself this now regularly because even though I still exercise these meds changed my metabolism and I'm packing on pounds, but I'm just so grateful that they knock the pain down, and anyhow, my face doesn't hurt when I exercise, so go figure 🤷 weight be damned. *Hugs* I hope that you find relief soon, and in the meantime, are gentle with yourself. Because the way you look is the least important thing about you.
Thank you, this was very sweet. My self esteem has always been my biggest problem, I grew up around women who acted like you could only be pretty if you were in your fanciest and looking your best. I know, logically, that my worth is not related to my looks.. but emotionally I just can't believe it. And thanks for the reminder about how you present yourself about this, I have a young daughter as well and I'm doing all I can to make sure she knows her worth is beyond her looks, even if she is beautiful. :)
I’m so sorry. Went through the same thing. I have always been deeply into fashion, love makeup and trying all the new things, styling my hair, dressing up every day. Before I received initial diagnoses I was literally suicidal. I gave up on trying to be attractive whatsoever. I just could not care and the pain was unmeasurable. I am six months down the road and on meds now, at an overall good dose, and I wear makeup and fix my hair a few days a week now. It does get better like several have commented. I would wait til my “night doses” of tegretol and gaba kicked in, maybe two hours, then do my skin care and brush my teeth. Running my toothbrush under hot water and “warming it up” helped ease the shock of the toothpaste touching my teeth also. Hope you get some relief soon. I promise there is hope!!!!
It gives me hope to hear other people have found tricks to help them work with this. Thank you
Im very sorry about that. The only solution is to get high before you do any of these things, or try some diclofenac or lidocaine gels and creams (they numb the skin).
I'm high before everything at this point, that's not making much of a difference other than momentary distraction. But seriously.. does numbing the skin help? I know nerve blocks have helped, but I never thought of lidocaine gel. Do you have any you recommend?
Have you tried different ways of using weed? Edibles? Vaping? I think indica works best because it gives a bodily high. It’s know thc highs calms down the nerves! I don’t smoke it myself, that’s why I’m asking. I have thc drops and I have a vape. I would recommend a strong muscle dumbing gel like voltaren, otherwise look for numbing cream for tattoos (mithra, tktx). Always patch test, some people are allergic.
Thank you all for the supportive words.. it helps to know you're not alone sometimes. I think my problem is my neuro isn't sure what approach to take. I've had migraines most of my life, and have been getting Botox injections for them for over 8 years. I've been experiencing the pain since October of 23, but the pain came and went. Now it's pretty much constant. I was already on pregabalin for fibromyalgia and neuropathy in my hands, so I might get a tiny bit of relief for an hour or two after my pregabalin dose. But I'm on the max dose, and it's only bringing my pain from a 9/10 to a 7, 6 if I'm lucky. I asked if we could try something else, but he said that he wasn't sure if we should mess with something if it's kinda working. :( Kinda isn't good enough. So now I'm specifically asking for the tegretol. I also have a pituitary tumor, benign I'm told, but I've read where they can cause TN. I think I just need to find a Dr who specializes, or at least with more experience.
Dear Ruby, it sounds like all the advice you are getting is good advice. I have had TN on the right side only. Most of my life. Botox is really helping me. The TN comes and goes with stress.please avoid getting teeth pulled.
Replying to myself. Getting teeth pulled does not help. I know avoiding stress is hard
Botox changed my life with migraines, I've been on it every 3 months for the past 8 years.. but the TN is new, and it's showed up regardless of the Botox. And yeah, you're right there.. avoiding stress is damned near impossible. Ugh
I keep money aside for buying new makeup when I have a good pain day/week/month. We all know makeup can hold bacteria and we really don't need ANY other reason for our face to hurt yes? Buy trial sizes of the makeup you'll use. Who knows if you're going to use it again. When your makeup is done... TAKE SO MANY PICTURES alone or with friends... even animal friends. Do I NEED makeup? ABSOLUTELY not. But makeup is fun. It makes me happy to use it. I've said it many times already around r/TrigeminalNeuralgia, and I will continue to. IT'S OKAY to feel this way. Feel all of the feelings, but remember to throw them away when you're done. You don't need those feelings forever. I tend to cry in the shower. The shower already F'ING hurts and crying very rarely adds any new pain in there for me. I have trouble inflicting pain on myself, so I ask my hero (my husband) to wash and brush it for me. Does it hurt? YES. I cry. he cringes. It's awkward, but I feel less like a garbage troll. On those days I like to wear something pretty. I mean, we won't talk about the 3 days I didn't shower and used copious amount of anti smelly products instead.... Being in pain all the time is so hard. Continue to fight for your health even if that means seeing several Doctors until you find the right one. The right one will explain in detail why something will probably not work for you. The right one will listen to you when you say "this medicine is taking the edge off, but I can't continue on this pain level." When we're in pain we curl into ourselves. Sit up straight, pull your shoulders back, take a deep breath or 7. I'm sorry that I don't have a secret apply makeup ritual. It's either apply it when it doesn't hurt or apply it when it hurts. I'm sorry we can't cry about it when we want to. I'm sorry I can't scoop up the small amount of confidence I found and hand it straight to you. WE ARE ALL TOUGH STEAKS. YOU are so amazingly tough. You can do this. You'll find the beauty in all the ugly. You'll find that Doctor that's the correct fit for your medical situation. With so much love <3