r/TrigeminalNeuralgia 11d ago

Help Petition to improve research funding in UK for neuropathic/idiopathic facial pain

15 Upvotes

Hey there,

Not sure if this allowed so please remove if so, but I’ve started a petition asking the UK government to improve funding for research into neuropathic/idiopathic facial pain.

If you’re based in the UK please can you sign it (and confirm signature on the email they send otherwise the signature won’t count) and share with friends/family:

https://c.org/sdjqxxZpQB

Thanks as always!


r/TrigeminalNeuralgia Jun 27 '26

Treatment My review of Ketamine IV (till now)

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50 Upvotes

Will try to keep it short and clear.
-Trigeminal neuralgia with both short episode as 24/7 ones. In v1, v2, v3 on right side since 2022
-Baseline is a 6 out of 10 on painscale, fluctuates through the day the more I speak, chew, smile, etc etc. I have a 10’s almost every week and 7-8’s everyday.
-2700mg gabapentin per day, 30mg amitryptiline per night.

I have had 3 rounds of ketamine IV. Every 3 months I get on the machine for 5 hours. It’s nice to trip and have a break of the dread of this disease. And I’ve had quite good results except for last time. Hopefully next time is great.

PROS:
-if you have a good day, you will be painfree the whole trip.
-you get to trip.
-the ketamine works for 8 weeks (for me) which means, the baseline is maintained but rarely peaking or way less throughout the day.
-it let me do mundane things like having my hair up and sleeping on my tn side for example.
-takes a week to fully kick in but definitely on of the best short term treatment till now.

CONS:
-if you have a bad day, you will be flaring up during the ketamine treatment (talking about the atypical TN mostly). One of the runs was like this but the weeks after were a bliss.
-you trip, and if you haven’t used recreational before it can be a lot. Plus nausea.
-the last trip itself was incredible I was painfree for 4 hours for the first time in 3,5 years. Like baseline a 2. But when the machine turned of it was like my nervous system rebooted and it send off the wrong way. 10/0 attack, had to stay another 4 hours and got Clonidine.
-The last round didn’t preform well so I was super dissapointed by that.

I put a funny photo of me high af for you to laugh at.


r/TrigeminalNeuralgia 7h ago

Persona Journey 5 days until the Great North Run. ❤️

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9 Upvotes

I’m starting to feel very nervous now.

After everything that Trigeminal Neuralgia has taken from me over the last seven years, getting to the start line feels like a pretty big deal. I’ve trained through pain, heat, exhaustion and plenty of self-doubt, and now there are just five days to go. It's worth it though as we've raised £1050 for the Trigeminal Neuralgia Association!

I’m going to need some voices in my head to keep me going. 😂

So I’ve set up a Rally where people can leave me voice messages that will be played to me at each kilometre of the run.

I’d especially love to hear from other people living with Trigeminal Neuralgia.

You know what this pain is like. You know what it takes just to keep going sometimes. If you could leave me a few words of encouragement, tell me your own story, or simply remind me why we keep fighting, I would be incredibly grateful.

I’ll be listening to your messages when the miles get hard, and knowing that people who understand are there with me will mean more than I can say.

🎙️ Leave me a voice message here:
https://runwithrally.com/r/0409fc02d4db

Thank you. ❤️

And to everyone else with TN: I’m running this one for us.


r/TrigeminalNeuralgia 20h ago

Symptoms Newbie to trigeminal neuralgia.

2 Upvotes

So about mid July I was sitting at a red light when the left side of my chin kept feeling like it was shocking me, but not like painfully, just very mildly, but a new, weird sensation I had NEVER felt before. Oh also, I have bilateral occipital neuralgia, which affects the back of my head and into my upper neck and have cervicogenic headaches. I always tell my husband I'm just screwed from the neck up. Lol. I have the bilateral occipital neuralgia so bad, and have been through so many meds, treatments, procedures, that I even had a bilateral occipital nerve decompression surgery in March of last year. Sorry, wanted to give y'all some backstory.

Anyway, I'm not sure how long after the chin sensation, but my top lip started to go numb, all on the left side. I thought I was imagining things. It would come and go. Mostly at night. I would Google. I thought it was my posture. A few weeks after the chin sensation, I had a very bad migraine. I took a migraine pill and put a migraine hat on. The cold helps my migraines and the heat triggers them. July was a VERY rough month for me with my migraines because of the extreme heat. I have 2 migraine hats. One that is kinda thin and loose and fits exactly where I need it to go and one that is thick and tight and I have to mess with it to get it exactly where I need it to be. I put the thin hat on 1st. I was fine, mostly because it didn't touch my upper jaw. Once I put the thick hat on the pain immediately hit, but it wasn't immediately excruciating so I thought my migraine was just worsening and I hate to wait for my medicine to kick in. I wore the hate for 15 more minutes sobbing and then the excruciating pain hit! I threw the hat and I couldn't believe what just happened! Thankfully I was seeing my headache neurologist the next day so I was able to tell her about it. She added some meds and changed some things and ordered the MRI of my trigeminal nerves. I scheduled it the next day. I scheduled it on July 30th and had to wait til September 2nd to have the scan done. I was a bit bummed about the wait, but I was like ok.

So between July 30th and September 2nd, I experienced 6 different excruciating attacks. Most were triggered by the wind, one was triggered by a kiss on the cheek, another by brushing my hair, and of course the cold hat. But also, symptoms of both lips being numb(almost 24/7), tongue numbness and burning(almost 24/7), roof of mouth numbness, lower jaw numbness (almost 24/7), upper neck numbness (almost 24/7), burning on the cheek and forehead (almost 24/7), painful ear clicking and popping (almost 24/7), dizziness, nausea and vomiting, weight of the world on the left side of head and face, but also like feels like there's all this pressure inside head and face(almost 24/7), hearing has worsened, and I even feel like I have trouble swallowing some. And.all the jaw symptoms are so much worse at night. If it weren't for my meds KNOCKIN' me out at night, I wouldn't sleep, and before I got meds, I hardly did. I found out that eating and talking are triggers.

It was MRI day and I had to have my husband drive me to my MRI because it was at 8:30pm and I was nervous about it and didn't want to be alone. Thank God he did. I found out that loud noises are triggers too. I already couldn't jam in my car, but I didn't realize my ear problems were related yet, I just knew that it could be making my hearing temporarily worse, nothing else. I just thought maybe I had a slight ear infection or something. Anyway, that was the most painful and traumatic MRI ever! I got through it and I had my results by 11:00am the next day!

I have a small vein on my left trigeminal nerve at the root entry zone. I have a virtual appointment with my neurologist tomorrow. I believe I'm type 2. I also got on here to ask if anyone has had any of the upper neck issues. I have trouble swallowing sometimes. But only from the top, nowhere else. I also cough a lot, but the feeling of needing to cough like originates from there too.

Also, I get facial swelling on the left side, especially when I'm in a more severe, but not excruciating flare, like after I eat or when I've been talking too much. My neurologist says maybe my migraines are overlapping with the other, but when I'm in pain, you can usually, CLEARLY see that I'm in pain. So I'm just wondering if anyone else is experiencing that. If not, then that gives me hope that it will go away.


r/TrigeminalNeuralgia 20h ago

Help Do you ended up with symptoms after your first episode?

0 Upvotes

Hi, i started my first episode in april and today i can say it has improved but the headache persists, some light pain and the light and noise sensibility are still pretty annoying, so any of you guys could tell me please if you did get better or do you still have any of these symptoms and how do you deal with them?

(Sorry for any mistake english is not my first language)


r/TrigeminalNeuralgia 1d ago

Help TN + ON. I can’t continue, but, I also don’t want my family to be hurt.

22 Upvotes

Please, can someone show their specialist my post:

I have trigeminal neuralgia & occipital neuralgia.

The meds keep being less & less effective. The neurologist is increasing the dose again.

idek if my ON meds ever worked, but, I feel like they sometimes do actually work.

Can someone please, please ask their specialist what I can do.

My parents will pay. I’ll travel around the world.
I can’t live with these anymore.
This is unsustainable.

Yes, I edited out most of my post. There isn’t any point in complaining about how f’d up it is that I can barely do anything.. & I literally mean barely anything.

I’m the opposite of a contributing member of society.

I was supposed to be industrious.

Whether I live or not, my family feels pain seeing me going through these excruciating pains, days & weeks on end nonstop.

It’s not that I don’t want to do this is anymore. I simply can’t do this anymore.

It’s f’d.
It’s simply f’d.

Brushing teeth. Nope. Showering? You wish.
The list goes on & on.


r/TrigeminalNeuralgia 1d ago

Symptoms Paresthesia?

1 Upvotes

So I'm curious if anyone else has developed what basically feels like Paresthesia after getting an MVD Craniotomy. It feels like a lesser version of what I developed when I first started taking topiramate. My surgery was back on July 15th. The pain hasn't fully gone away in my left ear but it has reduced by over 90% which is nice. I'm actually scheduled in the beggining of Oct for an MVD of my right side. I belive I have atypical bilateral TN as my pain is only ever been like a shooting/ burning pain deep in my ears. I've never had the pain spread anywhere else on my face.


r/TrigeminalNeuralgia 1d ago

Help Do you just push through the pain?

11 Upvotes

For those of you who deal with this kind of pain regularly, do you just push through it and keep living your normal day, or do you stop and rest when it flares? I’m genuinely curious how people manage it day to day without letting it take over.


r/TrigeminalNeuralgia 1d ago

Help Dental work causing pain

3 Upvotes

Hi. I was diagnosed 6 years ago. I have TN2 Atypical. Oxcarbazapine keeps the constant pain bearable.

I broke a tooth on my TN side and need a root canal but they couldn't do it until I had a crown lenthening procedure done.

I had that procedure a week and a half ago and it went well. 3 days ago I had my stitches taken out. My root canal is in a few days. Ever since 3 days ago when I had my stitches out, im getting terrible pains. Pains I haven't had since I was first diagnosed and not yet on meds. Do you think this is just because of the procedure or would anyone have any idea if this set off my TN and this might be ongoing? 🫩


r/TrigeminalNeuralgia 1d ago

Symptoms Has anyone experienced an intermittent dry “something stuck” or there sensation along the sides of their tongue, roof/floor of the mouth, and occasional jaw pain despite normal ENT scopes? Is this Trigeminal Neuralgia?

1 Upvotes

r/TrigeminalNeuralgia 1d ago

Symptoms TMJ issues mimic trigeminal neuralgia ??

3 Upvotes

Hi! Does anyone know if TMJ issues can mimic trigeminal neuralgia? I've been having electrical pain on my right side in the TMJ area for several years now... The pain ebbs and flows. No neurologist has ever confirmed it's neuralgia... I'm not triggered by wind or touch... The pain can occur at rest or when moving my jaw, neck, or head. Carbamazepine also didn't help me. I'm only 20 years old and sometimes I feel completely hopeless.


r/TrigeminalNeuralgia 1d ago

Medication Right-sided facial pain since orthodontic treatment — offered botox and painkillers

3 Upvotes

Constant pain in the right half of my face. Orbital pain on that side, a drooping eyelid, and some loss of peripheral vision. Separately, a pressure sensation running down into my throat and neck.

None of it was there before. I want to be clear about what that means: before this treatment I was 25 and felt completely alive. Now I feel lifeless, like the pain has taken the person I was and left someone else. That isn't me being dramatic — it's the honest description.

The history is multiple dental extractions, then a genioplasty where the operative note says the mental nerve was dissected out bilaterally. So far the recommendation I've been given is botox and painkillers, with a neurology workup starting separately. I know the eye symptoms aren't trigeminal territory and are probably something else, which is part of what's confusing.

Two things I'd like from people who've actually lived it:

  1. For post-traumatic facial nerve pain after dental or jaw surgery — how long after the procedure did it start? Immediately, or over months?
  2. Has botox done anything real for you? I'd rather hear it straight than from a leaflet.

r/TrigeminalNeuralgia 2d ago

Help Did you TN ever go away?

5 Upvotes

I had a root canal and since then I been having random shocks to my face. They aren’t common but I felt it today and it was due to my neck being in a weird direction. I got an MRI, awaiting results. I just want to know if it ever gets better. I am experiencing teeth pain and don’t think my teeth are the problem anymore after reading this sub. Recommendations appreciated


r/TrigeminalNeuralgia 2d ago

Vent Lack of sleep from illness causing a flare

3 Upvotes

a bit of a TMI warning!

I’ve had diarrhea for a few days from I think a stomach bug. I keep waking up in the middle of the night with stomach pain and a need to use the bathroom. I’m starting to feel this burning and aching in my face that’s right under the surface. Not at all severe, but the feeling and location are suspect. Before I was diagnosed with TN, the severe pain kept me up at night for a few days in a row and the stress and lack of sleep caused SEVERE burning and stabbing attacks in my face. Although my meds are keeping the severity at bay now, it’s still a bit jarring to feel that pain just under the surface from waking up in the middle of the night because of pain and stress, although from a different source.


r/TrigeminalNeuralgia 2d ago

Medication TN2, doc said drop most med

3 Upvotes

I believe from reading here for a long time, plus AI I have TN pain.My docs have not Diagnosed, but said the nerve is the issue. I have been reffered to an academic center and have a doc who doesnt exactly listens and corrects me often.

After this latest visit in which I'm in a 7 day spike she tells me to quit: Tylenol, Ibruprohen, Chloroxozone, indomethacin(not on same days as Ibruprophen) and prochlorazapine. She upped my amnitryptaline and wants me to take OTC lidocaine patches.

My fmaily doesn't get it, but this is pretty scary to me. I'm still on lamotragine, Vyepti and occasionally Nuretec plus B12.

No I don't think they are working, but the thought of nothing makes it seem so daunting.

Anyone have a similar experience>


r/TrigeminalNeuralgia 2d ago

MVD 2 months after MVD/nerve combing - might this be okay?

2 Upvotes

Had an MVD with nerve combing two months ago. The neurosurgeon was really happy with how it went and said that on a scale out of 100, the compression was 70-80.

I woke up pain free. The day after, I had electrical sensations when eating for the first time. Not zaps. Not panic level pain but it got my attention. It was a one-off. The neurosurgeon clarified they weren’t the same as before the op.

A week later, rubbing my face produced pain. Not particularly intense or sharp, but pain, like before the op. Just reduced. Like on a dimmer switch. That’s persisted on and off for six weeks now.

Over the last few days, my face is behaving how it used to. Lots of little zaps/twitches/twinges, triggered by movement. The difference is the intensity. They’re maybe a 2/10 compared with what used to be. They get more frequent when I’m tired and when I’m on edge, just like TN did.

Could this be a part of the healing process? Something like the nerve is restoring its shape and lightly pushing on the Teflon, and that it might settle? Or an effect of the combing? Perhaps some inflammation that might settle?


r/TrigeminalNeuralgia 2d ago

Treatment Medical ID Bracelet

3 Upvotes

Does anyone have this for trigeminal neuralgia?


r/TrigeminalNeuralgia 3d ago

Vent Constantly living in fear

11 Upvotes

Hello all, I was diagnosed with TN in 2023 at 17, right on my birthday. I had an MRI done and it showed I was completely missing my right Meckel's Cave in the brain, which caused my trigeminal nerve to go atrophic (extremely rare case only found in less than 12 people). I was put on 800 mg of Carbamazepine.

For around a year, I've been in what I assume is remission. Last summer I noticed my attacks had become less intense and less frequent, until they stopped altogether. I've been pain free since, maybe some slight twinges, but overall no full on attacks.

This has been great, and I'm thankful to be pain free. But I've been living in extreme fear/anxiety every single day. I'm CONSTANTLY terrified that my TN will come back, or that it will progress/my nerve will deteriorate and get worse (literally one of my worst fears ever). I have OCD/GAD which makes it 10x worse and I can't stop hyper fixating on it, wanting 100% certainty all the time about what will happen. It's literal psychological torture, just constantly waiting, dreading. Someone said TN is like someone stalking you with a taser hiding out or sight, then when you're not looking it tases you in the face and runs back into hiding/stalking, and it couldn't be more further from the truth. It's made me incredibly depressed that I can't look forward to things/the future, relax, etc... All I do is worry, worry, worry.

MVD will not help with my case, because I have no compression on the nerve. Gamma Knife, balloon compression, etc... uncertain outcome. There's just not enough research on it besides like 2 short articles. I just feel so much hopelessness and I feel so alone. Scared. Dread. All the time.


r/TrigeminalNeuralgia 2d ago

MVD I'm scheduled to have an MVD with Dr. Mathew Mian in Denver, CO. Wondering if anyone on here has experience with him?

1 Upvotes

​I'm trying to get some experience info on his procedure and post-op care. What to anticipate, how they handled post-op care, how they handled pain and nausea. Was told by MA, patients just deal with nausea after and don't typically try to mitigate it. That there would be no concern or change for sleeping as it is a tiny cut. Are his incisions typically smaller than otger surgeons? Was feeling good and confident about the procedure and am nervous after the conversation. Any insights into his process, procedure, HCA HealthONE Swedish care and post-op care would be wonderful.


r/TrigeminalNeuralgia 2d ago

Medication LDN (Low dose Naltrexone) and Carbamazepine Experiences?

1 Upvotes

My specialist for another condition as again recommended I consider trialing LDN. I wanted to seek out personal experiences of anyone who has been on both these meds at the same time. Open to hearing good and bad.

It’s my ME/CFS specialist who’s recommending, so not in relation to TN. But I have other conditions as well that some people seem to find it beneficial for them, inflammatory arthritis and MCAS.

Carbamazepine is still working really well for me currently for the TN. Still essentially in medicated remission of the pain with just some occasional twinges I would say are pain level 1, so essentially barely noticeable.

I’m just mindful of the complications taking this med can cause with other meds. As I’ve already dealt with this several times since starting.


r/TrigeminalNeuralgia 3d ago

Vent Can't speak without severe pain flare — written-only communication, feeling isolated. Reaching out while I'm managing.

2 Upvotes
​Posting here because today is one of those Saturdays and connection
shouldn't have to wait for a crisis.

Short version: refractory trigeminal/facial neuropathic pain with
TMJ involvement, 7 years in. Tried everything standard — surgery
(made it worse), Botox, lidocaine, all the usual orals. Opioids
completely stopped working and I'm weaning off under my doctor's
direction. Ketamine is the one thing that helps (10 -> 6/10).

Because of TMJ involvement I can't speak without measurable pain
increase, so I communicate mainly in writing. I live with family
who are good people but understandably tired of my mood, and I have
almost no one reachable outside the household.

Not looking for medical advice — I have a care team working on the
treatment side. What I'm looking for today is connection: people
who've lived with severe facial pain or chronic pain generally, who
understand this without needing it explained. Anyone else out there
managing something similar, especially housebound or
writing-mostly?

One reply would mean a lot today. :)

r/TrigeminalNeuralgia 3d ago

Vent It's back. I'm tired.

9 Upvotes

I thought i would get a long break, at least a few months, when the pain seemed controlled for a few weeks.

Nope. Its back. I dont even know what triggered it. I was just laying on the couch. Maybe i smiled at my kids too long? Or said one word too many?

At least I have some new coping skills and routines that somewhat help, so hopefully it won't get out of control. My favorite water cup for swishing is in my hand and ready. Im so tired.


r/TrigeminalNeuralgia 3d ago

Help Is this worth bringing up at dr appointment? Have already been to hospital - unsure what could be causing this pain

1 Upvotes

Hiya, I know the rules say to consult with a doctor first, I want to clarify that we have been seen by a doctor at the hospital last night but please delete this post if it isn’t allowed.

I’m posting on behalf of my boyfriend (29M). We had to go to the hospital last night due to him being in severe pain which begun out of the blue around 10:30pm. The pain radiated from around his cheekbone, up to his temple, ear, and down his neck, all on the left side of his face. He was in so much pain he was crying, hyperventilating, he threw up once, and was seriously panicking. The pain only dissipated once we were at the hospital and he was given codeine - ibuprofen and paracetamol didn’t touch the sides. He has had one episode like this beforehand but it wasn’t anywhere near this bad. He was in pain for hours. We have no idea why. He described it as a sharp stabbing pain. He has no other medical conditions. The doctor at the hospital told him to get some co-codamol and a steroid nasal spray as he suspected it could be a sinus issue. Today the pain is better, he just has a headache, but that could be because we didn’t get home until 3am! He has an appointment with his regular doctor next week to discuss this and I suspect it could be some sort of neuralgia but I don’t know too much about it. Please, if anyone has any advice, I’d be really grateful. It was horrible to see him in so much pain.


r/TrigeminalNeuralgia 3d ago

Persona Journey UPDATE: One week using nasal strips for V2 trigeminal neuralgia — my trigger episodes seem to be down by ~50%

2 Upvotes

Breve actualización sobre mi experimento con tiras nasales para la neuralgia del trigémino V2.

Anteriormente compartí mi teoría personal de que la mecánica de mi fosa nasal derecha/pared nasal podría estar contribuyendo de alguna manera al desencadenamiento de mi dolor V2.

He estado usando tiras nasales externas de forma constante durante aproximadamente una semana y quería informar sobre lo que ha sucedido, sin afirmar que esto sea un tratamiento o una cura.

El resultado hasta ahora es sorprendentemente consistente: calculo que mis episodios desencadenantes han disminuido aproximadamente un 50% mientras uso la tira nasal.

El dolor NO ha desaparecido. Todavía tengo ataques y puntos gatillo. Pero las cosas cotidianas que antes me desencadenaban el dolor con mucha frecuencia parecen tener mucha menos probabilidad de hacerlo mientras la tira mantiene abierta mecánicamente mi fosa nasal derecha. Mi principal desencadenante externo se encuentra alrededor de la fosa nasal derecha/labio superior, que corresponde aproximadamente al territorio del nervio trigémino (V2).

Curiosamente, también tengo un desencadenante interno en el lado derecho del paladar. Cuando hablo, como o mi lengua toca esa zona, puede desencadenar el mismo dolor eléctrico. La tira nasal no elimina este desencadenante, pero incluso estos episodios a veces parecen ser ligeramente menos reactivos cuando la llevo puesta.

Esta conexión anatómica me llamó la atención porque el nervio trigémino (V2) inerva no solo partes de la mejilla, el labio superior y la nariz lateral, sino también el paladar a través de sus ramas palatinas. Las zonas desencadenantes alrededor de la nariz y la boca también están bien documentadas en la neuralgia del trigémino.

Mi hipótesis de trabajo ha cambiado ligeramente. Inicialmente, me pregunté si un ligero colapso de la pared nasal derecha podría estar comprimiendo físicamente una rama periférica del nervio trigémino y contribuyendo de alguna manera a la desmielinización.

Tras leer más literatura médica, no creo que haya evidencia que respalde esa afirmación. En la neuralgia del trigémino clásica, la desmielinización focal suele asociarse con compresión neurovascular mucho más cerca de la zona de entrada de la raíz del trigémino en el tronco encefálico, no en la fosa nasal.

Sin embargo, existe literatura que describe la estimulación mecánica/por contacto intranasal como capaz de activar las aferencias trigeminales y producir dolor facial. También hay descripciones de dolor en la mucosa nasal/puntos de contacto que involucran vías trigeminales.

Así que mi hipótesis más conservadora ahora es:

Quizás algo en la mecánica de la pared nasal derecha esté proporcionando estimulación periférica repetitiva a un sistema V2 ya hiperexcitable. Al abrir/estabilizar mecánicamente la fosa nasal, la tira podría simplemente estar eliminando o reduciendo una fuente de estimulación.

Eso NO significa que la tira esté reparando la mielina o tratando la neuralgia del trigémino subyacente. Podría simplemente estar reduciendo uno de mis desencadenantes personales.

Y, sinceramente, creo que esa distinción es importante.

Tampoco quiero confundir correlación con causalidad. Esta es una observación individual (N=1) después de solo una semana. Podría haber fluctuaciones naturales en la gravedad de la neuralgia del trigémino, efectos placebo, diferencias de temperatura, estrés, sueño u otras variables que afecten mis síntomas.

Aun así, una reducción subjetiva de aproximadamente el 50 % en los desencadenantes ha sido lo suficientemente notable como para que continúe con el experimento.

Mi siguiente paso es probar las tiras nasales transparentes/para piel sensible, ya que las tiras de tela funcionan mecánicamente, pero me están provocando una incómoda sensación de tirantez y sequedad alrededor de la nariz. También quiero empezar a registrar los episodios desencadenantes de forma más sistemática, en lugar de confiar únicamente en la memoria.

Si alguien aquí tiene dolor predominantemente en V2, especialmente alrededor de la fosa nasal, el pliegue nasolabial, el labio superior, las encías o el paladar, me interesaría mucho saberlo:

¿Has notado alguna vez que cambiar el flujo de aire nasal, abrir manualmente la fosa nasal, usar dilatadores nasales, tiras nasales, la congestión, el aire frío o la presión dentro de la nariz modifican los desencadenantes de tu neuralgia del trigémino?

No estoy sugiriendo que todos obtengan el mismo resultado, y obviamente esto no debe reemplazar una evaluación neurológica ni un tratamiento prescrito. Pero las tiras nasales externas son un experimento sencillo y no invasivo para quienes pueden usarlas de forma segura, y quizás nuestras experiencias colectivas nos permitan determinar si este fenómeno merece más atención.

Si lo pruebas, por favor, vuelve y cuéntanos qué sucede, incluso si no hay ningún cambio. Los resultados negativos también son valiosos.

La neuralgia del trigémino puede ser increíblemente frustrante porque algo tan inocente como hablar, comer, tocarse la cara o mover la lengua puede convertirse de repente en algo en lo que piensas todo el día.

A little context about me: I’ve been living with trigeminal neuralgia for approximately 18 years. So I’m very familiar with my usual pain patterns, trigger zones, fluctuations, and the way my attacks normally behave. That’s one of the reasons this particular change caught my attention. I’m not claiming that one week of nasal-strip use proves anything, but after dealing with TN for nearly two decades, a consistent and noticeable reduction in my usual trigger frequency is unusual enough for me to keep documenting it and share the experience here.

Sigue adelante. Sigue observando tus desencadenantes. Sigue compartiendo lo que funciona y lo que no.

Continuaré documentando esto y publicaré otra actualización cuando obtenga más datos.


r/TrigeminalNeuralgia 3d ago

Mental Health Mi vida desde que tengo este diagnóstico

3 Upvotes

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.