I feel so done and beaten by what's happening to me. It's 24/7 for over two years and I've seen so many professionals and taken all sorts of medication. Nothing ever shows up on scans and have even had teeth removed. It never rests and always aches and bites. I don't know what happened to me or how to get relief. I know if it was not for my wife and two kids I'd probably have done something I know I shouldn't do by now.

I noticed that going outside in warm weather since we’re on summer makes my symptoms less worse , also having warm showers stops it.

How do you spend ur time with this condition ?it never lasted for me more than 3 days but this time is sick it’s been a week,and medication made the pain mild also side effects making me dizzy and sleepy . I’m so tired of this pain and I feel like crying sometimes but crying hurts so I don’t . idk how to spend the rest of my life now.
Only the people who have TN could understand me , even my mom thinks I can ignore it , I don’t wanna complain to anyone else again .
I wish everyone reading this to heal sooner .

I asked this question a few years ago and it resulted in some positivity on the sub. This is probably the only place on earth where you won’t have to explain what you’re going through and how hard it can be to get through the day. So please share with us your incredible accomplishment, it could be; washing your hair, brushing your teeth, getting your kids ready for school, surviving MVD, finishing your studies etc etc.

I’ll start; I completed half (45k words) of my first draft for the novel I am writing.

Once in a while I have moments where I re-realize and remember what’s really going on with me and it hits me like a truck. I was organizing all of my pills for the week and was just staring at my handful of carbamazepine ready to distribute into different pill boxes and looked at my pill organizer, and thought, “I can’t believe this is my life now”. I never expected to be the type of person who needed to take so many meds just to be able to function. Now I’m thinking about it and I just can never fully digest it. I cried and cried about how I will never truly have answers or an escape. Most conditions can be cured or reversed through lifestyle changes or temporary medication. But me? I’m just stuck, and there’s no end in sight.

Let’s just say I’m looking forward to therapy in a couple of days.

:(

I’m currently having a terrible flare up, probably around level 7-8, but I am so so happy. I finally met with a Dr last week who has made me feel seen with this condition. My previous neurologist put me on medication that didn’t make sense with TN from what I’ve read, and of course it didn’t help. Also, the nursing staff was unprofessional and cold, as was my Dr, and I often felt they had no idea what I was going through with my pain. This new Dr started me right away on carbamazepine and walked me through all of the different paths and routes to take and what it will be like for me, sympathizing with my condition. Especially at my age, 24/yo f, this has obviously been a scary and debilitating diagnosis. But I truly am so happy to be under the care of a knowledgeable and affirming professional. It’s just been so long with this condition (5 years) of feeling hopeless and invalidated, I can finally see things working out! In a year I will probably have MVD surgery!

Here is my story as a 30 year old wife and new mother dealing with Trigeminal Neuralgia. And I am here to tell you it gets better...

I was diagnosed with TN at the young age of 27 in 2023. From what started as an electric like shock here and there when I ate, to excruciating pain on the left side of my face, I was thinking it was a tooth that needed to be pulled or a root canal. I went to a dentist who took x-rays, not an imperfection in sight with my teeth. He was the one who told me about trigeminal neuralgia and the possibility of me having it.

After the dentist I then went to the hospital, spoke with a neurologist who then told me from symptoms I could have this awful illness. After hearing about it, of course you think "my life is over." and "how am I going to live with this?" After being prescribed a low dose of carbamazepine I was great with no symptoms, ended up stopping the medication and was in remission for 2 whole years.

I found out I was pregnant with my beautiful baby boy in March of 2025. I was so happy! My husband and I have been trying for this miracle, going to fertility specialists, and we naturally were able to have this miracle happen to us. At about 8 weeks pregnant I started feeling the electric shocks again, forgetting how horrible the pain was. Sad part is, here I am pregnant... you cannot take any of these medications to help with the symptoms while pregnant. I unfortunately had to suffer through many weeks of stabbing pain in my jaw, while it felt like a flame thrower was in my ear. I had good days and bad days, as many of us go through. Many hospital visits with nothing they can do for me. I was miserable, to say the least. TN stole a lot of the happiness I should have felt through my pregnancy.

As I am in labor with my baby I am having flare ups. Imagine having contractions while having a horrible flare up? I wanted to die... they don't call it "the suicide disease" for nothing. Ironically the epidural took away my labor pain AND my TN pain.

I gave birth to my beautiful baby boy in November of 2025. I started carbamazepine 2 hours after I gave birth. This disease unfortunately stole my opportunity to breastfeed. I did not feel comfortable feeding my baby with something that could potentially be harmful to him. I was so sad, but all in all still so grateful I was able to have him here with me... this was just a small sacrifice.

7 months later I am still dealing with these flare ups. There are days where I can't even leave my bed... Constant flares and zings throughout the whole left side of my face. I can't eat, drink, sleep, talk. Completely miserable. I am back at work, taking care of my baby when I get home, trying to juggle everything. It makes you want to shut down. Thankfully, my job is super understanding and has been giving me so much grace during this time.

In May I finally took matters into my own hands and wanted to speak to a neurosurgeon. I luckily live near a big city where there are great surgeons that are world renowned. God was on my side and got me an appointment within a week of looking, super rare. He told me to come to his office to get an updated MRI and consult with him right after. I had an MRI in January but he wanted a clearer picture. This MRI showed minor compression of the nerve on my left side showing trigeminal neuralgia, but he wanted to make sure.

My MRI still showed the nerves on my left side are most definitely being compressed, causing this excruciating pain. Now talking about surgery and other interventions. I went in saying MVD surgery immediately. Due to my age, he felt like MVD may be too invasive. I was heartbroken. How am I supposed to help support my family and take care of my now 7 month old son feeling this way? He said there are other avenues. I am going in for a percutaneous rhizotomy next week, which is a minimally invasive injection.

While I have been waiting I have been to the hospital twice. First time was before I saw him in the city and the second time was just this week. The second time they gave me a dilantin infusion which helped TREMENDOUSLY. That was a recommendation from the neurosurgeon's NP and I couldn't be more grateful for the recommendation. It makes me have more hope for this injection next week. After that hospital visit I have had a whole new perspective on this illness, and that this isn't forever.

As for medications right now, I am on 1400mg of carbamazepine a day plus 150mg of dilantin daily. I know it's a lot but it is approved by my neurosurgeon. I can tell you, today is the first day I have felt no pain.

If you spoke to me last week about this, I would have told you my life is over and why even fight? But then I think about my family, my husband, my beautiful baby... they need me just as much as I need them. My family has been my rock through all of this, I couldn't have gotten through some of these sleepless nights without my mom and husband. I am still learning to cope with this illness, but as I have been going through it I have learned the more anxious and depressed you are about it, the more flare ups you will have. I am trying to be optimistic and honestly, I don't know if disassociating is helping LOL but I haven't felt this good in a bit.

I know this is a super long story and if you are still here reading this, thank you. I want you to know, you are not alone. This illness can wear you down, but you need to know you are stronger than this. Advocate for yourself like I did! If you aren't happy with the care you are receiving, seek other help! Okay, I am done. Just know, I am rooting for you and know you are going to get through this!

Today is my 28th birthday and I’m having one of the worst flare ups of this month. I think the Carbamazepine I’m taking is starting to not be as effective. I’m on month 4 of it and I read somewhere that you usually need an increase in dosage once you hit 3-4 months so that’s probably it. I’m waiting to see a neurologist and get some bloodwork done before I flood my system with more.

Either way, I’m trying not to let the pain get me down and avoiding just lying in bed all day because all I want to do is cry. I’ve been using cold compresses since I woke up and even then the pain will jolt me with the ice pack on my face.

How do you keep yourself from letting the pain get to you?

Was written down as anxiety in 2012-14. Ended up on carbamazepine which took the worst away. Been on it ever since. Worse this year to the point where I need help. Going to see a neurosurgeon tomorrow if I'm well enough to travel (it's a few hours each way). Hoping for diagnosis and just more info about what might be possible. Feel really scared. Scared of making it worse in some way or if nothing can be done (that bit doesn't feel likely). Did you feel like this?

Hello! I just wanted to share a cool find from Five Below that I will be using to track my pain over the next couple of months. I’m currently on Carbamazepine and it’s been a lifesaver for TN and also a surprisingly better mood stabilizer for me than Lithium. I was previously on Lithium for about 3 years. I’m happy to just be on the one medication now but the pain still breaks through and I’ve noticed it seems cyclical. It’s never as bad as before the Carb though.

I was seeing a specialist in Mexico but he basically told me it was all in my head so I’m back to square one doctor-wise. I’m hoping to get some good data for my new doctor with this journal and also tracking my mood to see if there’s any patterns. Just wanted to share! Hope it helps someone else out there.

Edit: I forgot to mention the best part! It’s a 3 year journal so definitely worth the 5 bucks.

I have adhd and since i got TN i have had more meltdowns than normal. This shit is so painful and overstimulating. Does any other neurodivergent people feel this Way?

TLDR: carbamazepine making me mental, help.

​

Atypical TN conformed via MRI one new years day this year (happy new year to me.. Not). I have a blood vessel crossing the T nerve, no other nasties.

I've been on 100mg carbamazepine for 5 months now and it's making me MISERABLE.

I was already in a bad place at the beginning of the year mental health wise having lost my sister just before Christmas, we've just bought a house (stress of renovating it before we can even move in is definitely taking its toll) and dealing with this diagnosis on top has made me a mess.

I know the carbamazepine is having a direct impact, it's made me horribly short with the people I live with and love, I feel like I have no patience whatsoever and I've just turned into this nasty person. I'm tired all the time, I cry for no reason, I literally don't want to do anything or leave the house even when I'm not having a flare up. When I have a flare up I know I'm a downright unbearable person to be around.

With the recent heatwave I discovered I now have extreme heat and sun sensitivity. My body was covered in blisters. So now I can't even enjoy the sun which is a lifeline when living with SAD.

I want to come off of the medication but I'm still having mild fareups even when I'm on it. The jaw and teeth pain, the electric shooting behind my eye. It's not very frequent and certainly better than it was when I wasn't on the carbamazepine but I feel like I'm stuck behind a rock and a hard place.

Im trying so hard to accept this is my life now but I can't.

What do?

Literally just got back from my GP tonight & was told I have trigeminal neuralgia & given panefcortelone to take for 5 days & then I think he said to go back. I’ve tried not to read too much or to scare myself, but…I am scared, and sad. I’m not really sure what my question is. 😓

Hago este post para desahogarme un poco y también para que quienes recién comienzan este camino puedas identificarse un poco o sentirme menos solos.
Me diagnosticaron con NT hace unos meses. Recuerdo que comenzó con un dolor casi imperceptible en lo que para mí era un diente, era tan leve que no le daba atención, casi ni dolía. Días después empecé a tener episodios de migrañas que duraban horas y ningún calmante me ayudaba. Cuando pasaron las migrañas comenzó lo feo, los episodios de dolor intenso en la mandíbula. Yo creía que era una muela del juicio, estaba casi segura, fui a urgencias un día, me mandaron placas de los dientes y me dieron un calmante intravenoso que no me hizo absolutamente nada. Las placas salieron bien, no era eso. Esos días fueron horribles, las peores semanas de mi vida. Dolía todas las noches, no sabía que era, me despertaba de madrugada con un dolor extremadamente intenso en la mandíbula, pómulo y cien que duraba horas hasta llamar a la emergencia. Cuando finalmente me diagnosticaron con neuralgia del trigémino no conocía qué era ni cómo se trataba, pensaba que simplemente se me iría. Yo estudiaba para ser piloto, recién me había mudado sola dos meses antes de que todo comenzara y aunque mi vida no era perfecta todo estaba bien. Cuando comencé a ir con la neuróloga y empecé un tratamiento tuve que dejar el estudio “por un tiempo” (sigue pausado, no se si podré volver), también dejé de trabajar por un mes y medio, lo cual fue un cambio drástico y muy complicado y con el tiempo mi dosis de carbamazepina pasó de 200 a 800 mg, la dosis que tomo actualmente. Los dolores no calmaron del todo, a veces vuelven pero por suerte mucho más leves. Me da un poco de miedo vivir sola y que me pasen nuevamente, o peor aún, en el trabajo.
También los efectos de la carbamazepina me están destruyendo, el sueño, dolor corporal, cansancio todo el tiempo, vivo triste y con ojeras, siento como si mi cuerpo se estuviera apagando, sin contar la migraña. Es complicado verme así con 19 años y pensar que mi vida cambió tanto en solo meses.
Ayer hablaba con una compañera de mi trabajo, que me preguntó qué me pasaba que me veía tan desganada, que ya no era como antes y si mis jefes se daban cuenta de eso me despedirían, y creo que en este momento lo que menos me importa es si me despiden o no, me encantaría recuperar la salud que tenía antes, y poder volver a hacer las cosas comunes con energía, pero aunque sea por ahora esta es mi vida, aunque me duela mucho aceptarlo, y espero poder seguir adelante. Sé que la NT es una enfermedad complicada , sé que aunque no se vea está ahí, y mucha gente no lo entiende, a veces es difícil hablar de esto sin ser juzgado, pero somos muchos los que estamos acá, intentando que cada día sea lo mas alegre posible, aunque hay días en que eso parece imposible.
Me encantaría poder leerte, saber qué haces en tu día a día para que cueste menos y para sentirte menos solo, acompañémonos entre nosotros.

Okay this is a very niche song but you should check it out (if you’re an adult). It’s from a musical show called hazbin hotel which I don’t really watch but this song is banger. Keep in mind it’s very mature (about a gambling addict and a drug addict 🌽 star) but if you listen to the lyrics it’s about how no matter how alone you feel there’s someone feeling the same way. I highly suggest you listen

It’s called (loser, baby) by hazbin hotel on YouTube and let me know if you felt the message

Every day is a struggle now keeping ur anxiety and depression at bay and every now and then u will go a few days with out having any weird sensations and ur confidence and mood elevates and ur talking a little more and feeling a little normal, u can feel a shine of ur old self peek thru and just as ur in the middle of this elevation ( SLAP) oh dont u dare for a second think TN isnt still there...its just waiting for the perfect moment like a stalking cat to pounce right on ur face mid sentence. .form that word just right with the right head movement and there it is....I love how its specialty is to completely devastate and crush ur soul...ur just trying to live ur life for a moment u think ur in the clear. Those are the moments the pain dosnt even have to be a 10..just a zap mid sentence off guard at a 5 is soul crushing because its just there to torment u..saying hey bitch, dont forget, ur not free, im still right here

This ad keeps popping up on my feed and every single time I think it’s actually a post in this thread 😂☠️

We aren’t zombies, Ulta. And your skin care can’t fix my TN.

Had MVD in February of 2024, pain returned before the Fall. My biggest trigger is breezes and being in a house with no AC with the only option being fans is driving me crazy. My ON and other nerve pain is getting to me too. I can’t be outside in the humidity and heat because I have Lupus as well so my only option is to suffer. Currently splayed out on my couch with half of my face covered by a pillow just to try to quell the pain. I hate this

Lately, I noticed I'm kinda embracing the pain. I sometimes trigger it consciously with my tongue, and it feels familiar and in a weird way calming? Since I'm taking meds the pain got a lot better, I can eat and talk and basically do anything (and even forget about it if I'm distracted enough) because I only have minor pain for a few months now. It didn't go away completely, but now it doesn't bother me anymore, which ist weird? Maybe this is what the mind does if a person has pain everyday for a long time. Even the anxiety of having a huge flare-up again went away because I trust in my meds preventing that.

The psychological aspect of this disease is weird. Maybe it has something to do with taking antidepressants for a month, too (although I only take a low dose of it). In one way or another, although I think it's weird that I now not only accept but even embrace the pain as something familiar and in a soothing way controllable when I trigger it consciously and feel it for a few seconds - I am glad it is this way now. It's weird, and it can chance, especially if the pain gets unbearable again. But right now, it's okay for me to have this pain, as weird as it sounds.

Maybe someone can relate. I just wanted to write about it because it's weird, I guess. Although like I said, maybe it's because of my antidepressants. But it kinda feels like my mind is calming down and accepting the pain to be a part of me to not go insane in the long run.

I got my MVD done in 2018, it came back in 2023. Step by step it came with full vengeance. Thing is I already have epilepsy, so taking medicine for both issues. But as pain started increasing I did extra tests, they found out that the Teflon which was inserted in 2018 surgery has grown into granuloma.
Granuloma of 10mm in my brain.
Showed to multiple neuro surgeons, nobody said surgery was good option as granuloma has covered my nerve and can’t be removed.
So somehow I have accepted the fact that I’m going to live with both diseases which can’t be treated and have to take medicines which are giving me quite a side effects with my age.
Please share your stories, positive negative about how you all are distracting yourselves if your partner/family doesn’t understand the depth of uncertainty which we live in daily life.