#Trigeminalneuralgia
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scrappyaf.bsky.social
#trigeminalneuralgia if you can’t tolerate carbamezapine, oxcarbezapine, gabapentin, pregabalin, lamotrigine, etc. ask your doc about ESLICARBEZAPINE. 3rd generation from carbamezapine with far fewer and less intense side effects at lower doses (400mg is effective for me).
September 11, 2026 at 1:36 AM
rostunbrokentn.bsky.social
🌱 New handle, same heart: rostunbrokentn.bsky.social 🌱
#TrigeminalNeuralgia #ChronicPain
After a lot of thought, I’ve decided to change my user name—rostunbrokentn—to reflect a journey I’ve been on for a long time. It’s a tribute to: 🔥 Rost from Horizon – someone who carried pain, faced exclusion, and still stood tall. 💙 Unbroken – because I’m learning to live with my trigeminal neuralgia without letting it break me. 🩺 TN – the shorthand for my condition, a part of me I no longer hide. This wasn’t an easy choice. Chronic pain reshapes your world in ways others can’t always see. But I refuse to let it silence me. If you’re reading this, thank you for being part of my story—whether you’ve walked a similar path or just shown up to listen.
September 9, 2026 at 2:38 PM
rostunbrokentn.bsky.social
“36 Hours Without Pain – A Rare Treasure” 🌧️💙

#TrigeminalNeuralgia #ChronicPain #PainFree
It’s raining today 🌧️, and my trigeminal neuralgia is back with a vengeance. But for the last 36 hours, I got to experience something that’s almost impossible for me: days without pain 🎉✨. Normally, I only know pain-free moments for minutes or hours ⏳ – and truly rare exceptions of a few days within an entire year. These 36 hours felt like a small miracle 🌟, giving me normality and relaxation. I could breathe without flinching 🌬️. I could focus without distraction 🧠. I could just live 💛. For me, moments like these are like a gift – and they remind me how much I sometimes wish my life weren’t defined by pain 💔. To everyone living with chronic pain: You are not alone. Let’s share these rare glimpses of hope and hold onto them 🤝💪.
September 5, 2026 at 8:21 AM
rostunbrokentn.bsky.social
🌟 Finally pain-free for longer than just a few hours! 🌟
#TrigeminalNeuralgia #PainFree
I’ve been battling therapy-resistant trigeminal neuralgia for a long time, and usually, my pain-free moments are very brief. But since last night and today, I’ve been completely pain-free—even washing my hair, which is usually a trigger, didn’t cause any pain! This feels like a small gift. I’m hoping this relief lasts a while and gives me the strength to keep fighting. 💪 To everyone going through something similar: You’re not alone. Every little moment without pain is a victory. 💙
September 4, 2026 at 4:52 PM
msendojenn.bsky.social
How are you doing with all the crazy weather changes?

The humidity bothers my #MS and causes my hands to shake more than usual. Sucks when you work with your hands. Lol 🤷🏼‍♀️

#multiplesclerosis #endo #chronicillness #trigeminalneuralgia #endometriosis #thisisme
September 1, 2026 at 4:42 PM
rostunbrokentn.bsky.social
🌬️💙 When the Wind Becomes Too Much – A Reminder to Myself

#ChronicPain #TrigeminalNeuralgia #WeatherSensitive
🌬️💙 When the Wind Becomes Too Much – A Reminder to Myself Sometimes, it’s not the big events that challenge me the most—it’s the small, invisible things: a sudden shift in air pressure, a strong wind howling through the streets, or a pressure that feels like an unseen weight on my body. For someone with treatment-resistant trigeminal neuralgia, changes like these can suddenly make everyday life feel heavier. Today is one of those days. The wind is relentless, my body needs time to adjust, and rest becomes the most important medicine. I spend most of the day half-lying down to keep the pain from worsening. It can take three days for my rhythm to stabilize again. In moments like these, it’s okay to pause. It’s okay to step back. It’s okay to give my body the time it needs. Thank you to everyone who understands and is simply there. And to anyone else experiencing something similar: You are not alone. 💙
September 1, 2026 at 9:49 AM
citivascular.bsky.social
⚡ Sudden, severe facial pain? It could be Trigeminal Neuralgia.
Treatment options may include medication, RF ablation, microvascular decompression or Gamma Knife radiosurgery, depending on the patient.
Citi Vascular Centre,Hyderabad
#TrigeminalNeuralgia #RFAb­lation #Hyderabad
September 1, 2026 at 4:37 AM
arcadekitten.bsky.social
The Kiss #trigeminalneuralgia
August 22, 2026 at 1:41 AM
rostunbrokentn.bsky.social
🎵 When music gently pushes anger into the background—
and joyful emotions find their space

#FindingJoy #ChronicPain
#TrigeminalNeuralgia
A song that reminds me: there are other feelings too. Joy, gratitude, hope. And these moments of lightness are like little glimmers that help keep the pain from overwhelming everything. It’s not a battle against anger or grief, but a gentle allowing of all emotions. A smile, a song, a moment of lightness—small steps that help shift my focus and make room for life again. Grief isn’t possible without music—it needs this space to exist, to be acknowledged. 💙 How do you manage to see the small joys, even amidst heavy emotions? Share your moments—because sometimes, it’s the simplest things that help us keep going.
August 19, 2026 at 3:29 PM
hurricanegirl.bsky.social
Doctors say there is no cure for nerve pain.

I am living my life now after microdosing.

#TrigeminalNeuralgia #PeripheralNeuropathy
#phantompain
August 18, 2026 at 5:52 PM
lelandyachtclub.bsky.social
I wasn't either, but THC has been a big part of my life since I got caught up in the "opioid pain killers are the debil" clusterfuck.

#trigeminalneuralgia #cannabis
Foosball Is The Devil - The Waterboy
Alt: Foosball Is The Devil - The Waterboy
static.klipy.com
August 16, 2026 at 4:28 PM
rostunbrokentn.bsky.social
#Break #Trigeminalneuralgia #BeyondTheHorizon
For health reasons, I'm taking a break 🫂💙
From tomorrow, I’ll be taking a break from social media to recover from the heatwave, which has now been going on for almost six weeks. I don’t yet know when I’ll be back, as I want to give my body the time and rest it needs. The heatwave has been incredibly draining, both physically and mentally, especially because of the pain caused by my therapy-resistant V1 trigeminal neuralgia. Until then, do take good care of yourselves! 🌿💙
August 16, 2026 at 4:28 PM
rostunbrokentn.bsky.social
#Spotify #Trigeminalneuralgia
#BeyondTheHorizon #HorizonForbiddenWest
"My favorite songs I listen to in combination with Horizon Songs to distract myself as best as I can from my therapy-resistant V1 trigeminal neuralgia on a bad day like today. 🎵💔
open.spotify.com/playlist/5xT... (1/2)
Favorite Songs + Horizon Songs
Playlist · ChrisCosyCosmos · 64 items
open.spotify.com
August 15, 2026 at 11:35 AM
apainprincess.bsky.social
“I know how hard it is to face the pain… Sometimes the idea of forever or even surviving just the next few hours feels too heavy… I know the disappointment and all the ways you feel like you are failing—even though you aren’t.” https://buff.ly/3PNPfhI #SeverePain #TrigeminalNeuralgia #ChronicPain
August 13, 2026 at 4:23 PM
rostunbrokentn.bsky.social
🌬️ Hoping for Cooler Days Ahead

For 10 years, I’ve lived with therapy-resistant V1 trigeminal neuralgia—this summer has been especially tough. I’ve relied on emergency medication almost every other day. But starting Monday, cooler weather is finally on the way. (1/3)⬇️
#TrigeminalNeuralgia
August 13, 2026 at 1:02 PM
msendojenn.bsky.social
I've been asked if I am still writing & my answer is... YES absolutely! With moving & some emergencies, I just haven't had time to type & submit stuff but things are coming! ✍🏼

#MS #multiplesclerosis #chronicillness #endometriosis #trigeminalneuralgia #writing
August 11, 2026 at 3:26 PM
clinicalpainadv.bsky.social
A deep learning model was accurately able to quantify neurovascular compression to predict #PainRecurrence after surgery in #TrigeminalNeuralgia, an approach that may help in screening patients seeking treatment.

https://bit.ly/4q8hdry
Deep Learning Quantifies Neurovascular Compression, Predicts Outcomes in Trigeminal Neuralgia Pain
An automated deep learning model may help clinicians predict the risk of pain recurrence in patients undergoing surgery for trigeminal neuralgia.
www.clinicalpainadvisor.com
August 10, 2026 at 6:49 PM
rostunbrokentn.bsky.social
#Trigeminalneuralgia #ChronicPain #GamingwithTRTN
#BeyondTheHorizon #HorizonForbiddenWestPC
🎮 From PC Gaming to New Paths – and the Hope for a Comeback
Before I was diagnosed with therapy-resistant trigeminal neuralgia (TRTN), my PC was my pride and joy. Hours of gaming, full control, the freedom to tweak everything to perfection—it was my kingdom. But over time, gaming on my PC became increasingly difficult. The heat from the monitor, the need to sit so close, and the pain made it almost impossible to keep playing like I used to. So, I had to adapt. And yes, it felt different—but no less meaningful. 💙 My alternatives: ✅ PS5 (since 2021): More comfort, less heat, and I can lean back to ease my TRTN. ✅ PS4 (since 2016): A tried-and-true solution for relaxed gaming sessions. ✅ Nintendo Switch: Perfect for gaming during heatwaves. But here's the thing: I never gave up hope. I even upgraded my PC hardware three years ago—not because I needed it at the time, but because I told myself: "Maybe, just maybe, I'll be able to game on my PC for longer stretches again one day. And that would be a small victory over TRTN." It's okay if priorities change. It's okay to make compromises. But it’s also okay not to let go completely—even if it’s just a dream for now. To everyone who’s walked a similar path: You're not alone. And it’s okay if the journey looks different than you imagined. Photo is from the PC version of Horizon Forbidden West, Ryzen 7 7800X3D, 64 GB DDR5, AMD Radeon RX 7800XT Aloy
August 10, 2026 at 10:42 AM
rostunbrokentn.bsky.social
#ForrestGump #EmotionalHealing #Trigeminalneuralgia
Last night I watched my absolute favourite film, *Forrest Gump*, again – and that was one of the best decisions I’ve made in a long time. 💙
en.wikipedia.org/wiki/Forrest...
Sometimes you just need a story that draws you in without asking for anything in return. A film that makes you think, but also gives you a chance to switch off. “Forrest Gump” did exactly that. It helped me clear my head, and for a few hours I was able to forget the pain that my treatment-resistant trigeminal neuralgia so often brings. Most importantly, though, I was able to immerse myself fully in the emotions – without fear of the consequences. Normally, strong emotional reactions like crying immediately trigger my pain. But yesterday was different: I could laugh, I could feel every moment, and yes, I could even cry. And I wasn’t punished for it. Films have incredible power. They can comfort, distract, inspire – and sometimes they’re just there. And sometimes that’s exactly what you need: a moment when you’re allowed to feel, without limits or restrictions. Is there a film that has comforted you during difficult times? Or one that simply makes you feel good, no matter what’s going on? 🎥✨
August 9, 2026 at 3:50 PM
rostunbrokentn.bsky.social
#Trigeminalneuralgia #Chronicpain #Invisiblepain
#BeyondTheHorizon #HorizonForbiddenWest
"10 years with trigeminal neuralgia – a life between pain and invisible struggles. 💔🩹
I am Austrian and have been living with therapy-resistant trigeminal neuralgia—one of the most agonizing pain conditions a person can endure—for a decade now. Every single day is a struggle: the pain drains my energy 🔋, and the constant fight against it leaves me exhausted. There is no natural cause of death from this disease—only the pain 😔. And this pain can become so unbearable that it leads to suicidal thoughts. 🚨 In moments when I try to connect—whether through a farewell post or a simple message—I don’t ask for much. But I do ask for respect. A response. A sign that my voice matters. In our cultural circles (Austria, Germany, Switzerland), this is the standard: you reply because it shows courtesy and appreciation. When that response doesn’t come, it feels like someone is saying: You don’t matter enough. 💬❌ Yet in cultures like the U.S. or others where efficiency and pragmatism often overshadow empathy, things are different. That doesn’t mean people there are less compassionate—it just means the expectations are different. 🌍✨ A simple ‘thank you,’ an ‘I understand,’ or even just a heart symbol 💙 can make a huge difference for people like me. It says: I see you. And that means more than you know. 🙏 Thank you to everyone who understands that sometimes the smallest gesture counts. And to those who are simply there—even without words. 💛
August 7, 2026 at 9:31 AM
drdaviddarrow.bsky.social
After the recent navigation paper, a classic from Neurosurgery: in 1,216 patients with TN, pain-free survival after one RF rhizotomy was 57.7% at 5 years. The curve captures both durable benefit and the reality of recurrence.
#trigeminalneuralgia
doi.org/10.1097/0000...
August 6, 2026 at 9:41 PM
rostunbrokentn.bsky.social
Many thanks to everyone whose kind words and support gave me the courage to persevere despite the extremely severe pain.......🫂💙
#Thankyou #TrigeminalNeuralgia #Chronicpain #Invisiblepain #Weather
Many thanks to everyone whose kind words and support gave me the courage to persevere despite the extremely severe pain. I’m now going to get plenty of rest and recover. The weather I’d been looking forward to so much has finally arrived – and it’s set to last for another day. The coming nights will also be cooler, which will do me good too. The constant pain has also gone and is behaving as is typical for trigeminal neuralgia again. 🫂💙
August 6, 2026 at 7:47 AM
rostunbrokentn.bsky.social
Over the next few days, it's going to get cooler at night, which will make it easier to air the rooms. A glimmer of hope, but nothing more. 🥵🤕 #Weather #Chronicpain #Invisiblepain #Trigeminalneuralgia
August 5, 2026 at 11:40 AM
rostunbrokentn.bsky.social
#TrigeminalNeuralgia #ChronicPain #InvisiblePain
Taking a longer break for health reasons 💙
There’s something else you should know: how I’m really feeling health-wise. My treatment-resistant trigeminal neuralgia has flared up again due to the ongoing heatwave and, since yesterday, has been causing constant pain rather than the intermittent pain typically associated with trigeminal neuralgia. The coming days and nights will be crucial for me; if my condition doesn’t improve, I’ll have to go back to hospital. That’s why I’m taking it easy for now and hoping I’ll feel better soon once the heatwave is over. But I’m still here, liking and commenting on posts to take my mind off things as best I can, and listening to music.
August 5, 2026 at 10:26 AM
lelandyachtclub.bsky.social
THIS.

It shouldn't have taken 20 years to get a diagnosis. Instead of listening to me when I said where my pain was, I was TOLD where it was.

I finally have a team of doctors (neurosurgery, pain mgmt, etc.) who listen. I know how lucky I am in that regard.

#trigeminalneuralgia #facialpain
August 4, 2026 at 4:43 PM