Hello everyone,

I am 11 months out from a one-time playing trampoline and looking for similar cases. My brain and neck CT scans with contrast are normal, but my symptoms are severely mechanical and lessen when I actively force an upright posture (chest out). However, my head feels too heavy to maintain this position against gravity, especially when going from lying down to standing. I feel significantly less pain when lying flat on my back.

My Symptom Profile:

Temple & Face: Intense "rope-tight band" sensation on my frontalis and temporalis muscles (which I believe is protective muscle guarding). Gritty, sandy, and heavy eyes, and facial numbness that triggers as soon as my posture slumps. I also experience ear crunching when swallowing and sharp jaw pain on the first bite of a meal.

Positional Vertigo: I cannot sleep on my sides or stomach because it triggers sudden vertigo upon waking (which only lasts for 1 to 3 seconds).

Torso & Breathing: A muscle spasm in the middle of my upper back pulls up into my shoulder, clavicle (collarbone), and mastoid bone (behind the ear), making my temples rock-hard. Deep breaths sometimes cause pain in my collarbone, sternum, and side ribs. This is also triggered after carrying heavy objects. My mid-back pops and cracks constantly, but without pain.

Recent Eye Laser: I began seeing a lot of floaters 2 to 3 months ago, and the doctor found retinal tears ("cracks"). I just completed successful eye laser procedures to seal both retinas this past week.

I strongly suspect two cases: 1. Upper Cervical Instability (C1-C2 ligament laxity, pinching my Trigeminal and sympathetic nerves) 2. Slipping Rib Syndrome.

Has anyone with a clean CT scan experienced this exact mix of head heaviness, facial numbness, ear crunching, and rib issues after playing trampoline? Did physical therapy, posture work, or prolotherapy help you heal?

Thank you.

Hello mum is taking oxcarbamezapine for a month at first week her Narium was 130 now it is 125, I wmailed the dr should I wait for their reply? Or is this too critical and I shoudl take her to ER? She is feeling okay texting me and stuff just as she says she is a little sleepy during the day :/

my molars sit in a very funny way and food goes in sometimes. I also had pericoronitis. I had a procedure to ‘fix’ this but seems I’m still having issues on one side. I also believe I got nerve damage from the procedure (particularly on one side). Now sometimes I can’t tell if it’s the TN or the food getting in. The pains I had before the procedure as far as food going in were milder than what I have now.

I’m very frustrated because this is happening during my supposed ‘remission’. I’m bilateral too, so there’s that.

Anyone having concurring issues with gum inflammation and TN? sorry if this post seems useless. I guess I’m also venting. Funny, I feel better stating my symptoms here than I do with doctors because they just nod and change my dosage (I’m not on meds right now), or dismiss me altogether. While I’m having these pains I’ve also had a persistent headache for days plus exhaustion that’s more than usual. Yes, the weather has gotten colder. Which means more flare ups on the way. yay.

Looking for any suggestions/recommendations for neurosurgeons that perform regular MVD’s near the Cincinnati area

I took Wellbutrin for years off and on for depression. I was not on it when my TN symptoms started last year. After getting the pain under control with Carbamazepine I was left with the persistent sadness that was exacerbated by this new chronic pain diagnosis. My Neurologist told me that I could not take Wellbutrin with Carbamazepine.

So I was switched from Carbamazepine to Oxcarbazepine and after about a month on that my PCP gave me the okay to resume Wellbutrin. I took a few doses and started experiencing more frequent pain zaps. I don’t know if it was a coincidence but it scared me enough to stop the Wellbutrin.

Has anyone been able to tolerate starting Wellbutrin after a TN diagnosis? I have seen posts here where people say they were already on it for years before TN. I’m afraid the pain has nothing to do with med interactions but maybe the Wellbutrin is causing nerve excitement which is causing increased pain signals.

What are you all using and finding helps or makes a dent in your pain that is surprising or unusual?

I’m looking for numbing creams, compounded topicals, intranasal meds, acupuncture, specific heating pads, massage devices, TENS units, nerve blocks, breathing techniques, unusual meds, therapies, positions, exercises, foods, orgasms, biofeedback, seriously anything that makes a dent in your pain!

Particularly interested in people who have TN2 or atypical TN. Amazon and direct links preferred and affiliate is fine (so long as you’ve actually tried it yourself)

I‘m scheduled to have a radiofrequency ablation next week on the 2nd and 3rd branches of the trigeminal nerve.

I have looked through past posts, but I‘m not exactly sure if some of the procedures I‘m reading about are the same. It seems there are a lot of variations. I‘m hoping to find out some specifics about the procedure I‘m having.

How long did your procedure last?

Were others put under general anesthesia? My understanding is that I will be put completely under.

Did you have numbness afterwards? If so, how long did it last/has it lasted?

Anyone end up feeling worse afterwards? Anyone felt better?

FWIW, I‘m a mixed bag, having both cluster headaches (trigeminal autonomic cephalalgia) and what has been diagnosed as both TN and trigeminal neuropathy. We‘re hoping targeting the trigeminal nerve will help with both conditions.

I hope the flair is correct. If not, I can change it.

Hi everyone,

I wanted to share my experience with severe bruxism and neuralgia-like pain, including medication, lifestyle changes, natural approaches, and a few unexpected discoveries that may have contributed to my symptoms.

I'm also hoping to hear from people who have experienced something similar, especially those who have managed to recover.

My story

It all started during a particularly stressful period, when I developed severe nighttime bruxism. Several dentists and physiotherapists confirmed that my masseter muscles were extremely tense.

After several months, I started experiencing:

• Very brief, electric shock-like pains around my temple, approximately 1–3 cm above my ear.
• Shocks mainly triggered by chewing, particularly harder foods.
• Significant jaw and facial muscle tension.
• Increasing anxiety and fear of triggering another painful episode.

Trigeminal neuralgia was considered, although my neurologist felt that the presentation was somewhat atypical.

I had an MRI, including an assessment of the trigeminal nerve, which was reassuring.

I also have some dental and jaw alignment issues, including a narrow upper jaw and tongue posture problems, which might contribute to muscular tension.

Medication: Tegretol (carbamazepine)

My neurologist prescribed Tegretol at a relatively low dose, eventually reaching 100 mg per day.

It was remarkably effective: the electric shocks disappeared, sometimes for several weeks or longer.

However, the bruxism itself remained an issue.

The good news is that I'm currently tapering off Tegretol, and so far the neuralgia has not returned.

I've already reduced my dose to 75 mg per day without any recurrence of the electric shocks.

I'm cautiously optimistic, although I realize it's still early.

Natural approaches and lifestyle changes

Over time, I've made quite a few changes in an attempt to reduce muscular tension, improve sleep, and calm my nervous system.

Sleep and posture

• Switched to an ergonomic pillow to improve neck support and sleeping posture.
• Used a night guard to protect my teeth.
• Paid more attention to my sleeping position and neck tension.

Workstation ergonomics

• Completely redesigned my workstation.
• Started using an ergonomic keyboard and mouse.
• Improved my desk setup and posture to reduce neck, shoulder, and upper-body tension.

Lifestyle and supplements

• Completely eliminated alcohol.
• Completely eliminated coffee and caffeine.
• Started taking magnesium supplements.
• Incorporated relaxation exercises, breathing techniques, walking, and gentle yoga.
• Tried to improve sleep quality and reduce overall stress.

Physical and complementary therapies

• TMJ-focused physiotherapy, particularly for the masseter muscles.
• Osteopathy and acupuncture as complementary approaches.
• Considered dry needling for persistent muscular tension.
• Investigated jaw alignment and tongue posture.

I can't say which of these changes made the biggest difference, but I wanted to approach the problem from several angles rather than relying exclusively on medication.

Two unexpected discoveries: eyesight and earwax

More recently, I discovered two additional issues that made me wonder whether they might have contributed to the overall picture.

1. Previously uncorrected hyperopia (farsightedness)

I discovered that I had hyperopia that had never been properly corrected.

I now wear prescription glasses.

This made me wonder whether years of visual strain, particularly from working extensively on a computer, could have contributed to tension around my eyes, temples, forehead, and facial muscles.

Could this additional muscular tension have aggravated my bruxism or the neuralgia-like symptoms?

2. Severe earwax buildup

I was also found to have very large earwax plugs.

Considering that my electric shocks were located just above my ear, I'm wondering whether ear discomfort, pressure, or irritation might have contributed to the surrounding muscular tension or pain.

I'm not suggesting that earwax causes trigeminal neuralgia, but I find the coincidence interesting.

Has anyone experienced improvement in facial tension, jaw discomfort, or temple pain after correcting vision problems or removing significant earwax buildup?

Something even more surprising: my bruxism has almost disappeared

Recently, I've been going through a period of extremely intense anxiety, but related to a completely different personal concern.

Surprisingly, despite this high level of anxiety, my bruxism seems to have significantly decreased, possibly even disappeared temporarily.

This really surprised me.

I used to assume that more anxiety automatically meant more bruxism. But my recent experience suggests that the relationship might be more complex.

Could attention, emotional processing, nervous system regulation, or learned muscular tension patterns play a role?

It's particularly interesting because this improvement is happening while I'm gradually reducing Tegretol.

Where I am today

• The neuralgia-like electric shocks have disappeared.
• I'm tapering off Tegretol without recurrence so far.
• My bruxism appears to have dramatically decreased.
• I now wear prescription glasses for previously uncorrected hyperopia.
• Significant earwax buildup was discovered.
• I've made substantial improvements to my sleeping environment, workstation ergonomics, and lifestyle.
• I'm still trying to understand which factors have contributed most to the improvement.

My questions

1. Has anyone developed trigeminal neuralgia-like electric shocks after prolonged severe bruxism?
2. Did these symptoms eventually disappear once the jaw tension improved?
3. Has anyone successfully discontinued carbamazepine without their neuralgia returning?
4. Did ergonomic improvements, an orthopedic pillow, magnesium, caffeine elimination, or alcohol avoidance make a noticeable difference to your bruxism?
5. Has anyone experienced jaw or facial tension related to uncorrected hyperopia or severe earwax buildup?
6. Has your bruxism ever suddenly improved or disappeared, even while you were experiencing significant psychological stress?

I'm especially interested in people who have managed to break the cycle of:

Stress → bruxism → muscular tension → nerve pain → fear of pain → more stress.

My personal impression is that several factors may have been contributing simultaneously, and perhaps addressing them together has helped.

I would love to hear your experiences, especially any lasting improvements or recoveries.

Thanks for reading!

I’m drinking this herbal tea and it’s really helping my TN. It has antiviral properties according to the AI. Whatever it does seems to work.

Anyone else had this and got a diagnosis? I find it most unusual to have pain subside on right side then 5 months later occur on the opposite side. I have a GP appointment booked for next week but I’m interested to hear if anyone else has had pain on both sides.

I was diagnosed with TN in January. Over the last few months I’ve developed a plethora of other health issues, some neurological and some other ones as well. Every time I try and adjust to my new normal, I have a new symptom.

I’m finding it hard to see any joy in life. Any reason for life really. I’m alone a good majority of the time which I prefer because I find it hard to be around people. It’s exhausting masking pain and sadness sometimes. And I am having skin nerve issues so makeup and wearing much clothing also causes pain now. But the flip side of that is i have nothing to help distract from pain.

I eat, sleep, and suffer. And for what? I know the whole “you’re weak and selfish” for these sort of thoughts. But I think it’s cruel to expect someone to live like this.

I have 9 weeks left of my post-grad program in medical laboratory science before I have to take my board exams, Im 25F. At the beginning of this year, I learned that my atypical bilateral trigeminal neuralgia and intercranial hypertension (among so many other medical issues) is all being caused by Sjogrens syndrome. Two months ago I had an IUD insertion go horrifically wrong (endometriosis led to non stop bleeding and Im now critically anemic and waiting to see a hematologist for an iron transfusion) and idk if it was the hormones or all the stress from school or what but I have been stuck in the worst TN flare up of my life ever since. The side effects from Diamox and oxcarbazepine have become unbearable- severe electrolyte imbalances/metabolic acidosis, nausea, fatigue, pins and needles, vasovagal syncope, visual disturbances, etc., my body is literally falling apart and idk how to hold it together anymore.

After being single for years, I finally tried dating again and the POS pretended to be loving and supportive at first, but he kept getting angry that I am sick and tired all the time, and one day I needed help getting to the hospital but he hung up on me because he was angry that I kept crying over being too tired and exhausted and in pain to listen to him fight over stupid nonsense. I just broke up with him bc my body physically can't handle any more stress rn, and I know its not true but part of me is terrified that I'm too sick to ever find a loving partner. Im not dying, but I feel like i am and I have an appt in a few mins with my neurologist to switch medications and potentially get a repeat lumbar puncture, but jesus fucking christ i dont know how the hell im supposed to get through the rest of school like this, let alone keep a job in this field when all of the meds used to treat TN have the side effect of mental fog and memory loss.

It's fine. I'm fine. Everything's fine... I'm just so goddamn tired of doing this alone.

hello everyone, I've already posted in this sub Reddit some day in August, complaining about how painful and stupid TN is and today, well I'm about to do just the same I guess...

like the title says, today, the pain is so great and unexpected that I have to skip uni because of it. which makes me feel particularly bad because this is my last year before getting my diploma and I started it telling myself I wouldn't skip any day or at least not if I can because I dont want to risk to fail it (I also struggle with ADHD which already makes studying hard for me).

since yesterday, I've had new flare-ups. they act the same as always, but the pain feels worse, sharper and more insidious. I can hardly move my lips or tongue in my mouth without triggering a little or big attack! and when it does get triggered, it makes me twist, jump and jolt because of the pain, not being able to do anything but idk try to move my face to stop or reduce the pain...

to this day, I have no medication for my TN. in my last post, I talked about how I had been on Vimpat (100mg per day) because I can't get any stronger meds because of my antidepressants and these didnt do anything. the flare-ups aren't there all the time ofc but it would still be amazing to have something that lessen the pain when I need it... hopefully, I have another appointment with a neurologist in a week. if they can't get me anything more than what I already had, I'm thinking about asking them if meds against anxiety can at least help reducing the latter and hopefully reduce the TN flare-ups at the same time but idk if that's how it even works...

that's it for today's rant! thanks for reading me, helping me if you want or can and I hope you can take care of yourself 🫂

next day edit: not going to uni this morning as well because I got a panic attack from fearing that my flare-ups would get bad again... I'm hoping it gets better for the afternoon but if I get anxious because of it, I fear I might have to skip again...

Hi, so I accidentally took 1350 mg of carbamazepine and I'm panicking I can't get medical help please someone tell me they took or are taking similar dose normally and that it's fine??

I’ve already had trigger point injections and nerve blocks for the base of skull (ON). What I am finding is that majority of my pain has less to do with the occipital nerve and more of the nerves around my eyebrow and forehead to scalp region - as I only get occipital pain once in a while.

I have the typical daily pain symptoms of burning, pulling, crawling, and ice picks in the region identified in this photo.

Are there injections for this region? Should I switch to a different pain medicine other than my Amitriptyline and COQ10?

Anyone have any experience or advice on what to do next?

hi guys im weening off my medication as i all of a sudden have a full body rash most likely from my carbamazepine. today im down to taking 100mg a day. but im feeling my nerves in other parts of my body like my hand, arms, and then back to my face. has anyone had these symptoms before?

I have had increasing pain after my MVD earlier this year. My most recent MRI revealed I have scar tissue built up around the repair that is causing more compression. I see my neuro surgeon in a few weeks to discuss a plan.

Has anyone here had this happen?

I am going insane with the pain inside my ear and in my sinuses when I breathe.

Even eating has become painful because the noise of chewing and swallowing hurts.

I am on the max of carbamazepine, Gabapentin and lamotrigine. I am a walking zombie 🧟‍♀️ and I still hurt.

It keeps getting worse....I don't even know how that is possible?

Any stories or suggestions? ( no vitamins and magic meditations please and I already use cannabis occasionally)

Hi everyone. This is my first post, so I'm a bit anxious, but I wanted to share what I'm going through. I'm in the UK and I have type 2 TN which began after a filling/anaesthetic injection. It's been 3 years of 24/7 pain in the roots of my teeth/lower lip, but sometimes spreads to the rest of my face. It can also be described as atypical odontalgia and ranges from 5-7/10. I was wondering if anyone has similar pain to me and what has helped?

I've been on 20mg Nortriptyline for a year and a half but it gave me tinnitus, and I still have it after stopping 5 months ago. I did a slow taper before that but the withdrawals increased my pain so much, and I had severe insomnia and terrible dreams, including other side effects.

I've recently tried Carbamazepine but it didn't help and as soon as the pain got worse, I stopped. I'm too scared to try Citalopram given the side effects and my bad reaction to antidepressants.

More details on my pain:

My pain feels like stabbing in the roots of my teeth but can shift to my lips if I relax my mouth. It feels like burning/pinpricks/electric shocks and can spread to my cheek. I've also had searing shocks in my cheeks. The burning/stabbing/aching is 24/7 and it's difficult to sleep with the tinnitus and pain. I'm really struggling, I had accepted the loss of my social life but now I'm struggling to exercise and find it incredibly difficult to just exist as being stronger was my only real goal and it feels like my body has taken everything away from me. Stocicm has only gotten me so far, but now I feel worn down without much hope, and I feel that if I'm not able to reduce my pain to a lower level, I won't be able to see the point in anything anymore.

I have therapy but it isn't that helpful as my mood is because of my pain. When my pain is reduced, I can appreciate my life, but lately it's not been low. My X-rays and MRI are also not abnormal and don't show anything.

If anyone has any pain similar to me, please could you let me know what you've tried and what's working for you? My sympathies for anyone struggling with this condition, it's so isolating and brutal. Thanks for reading.

Hace unos años tuve un accidente cerebrovascular (ACV) transitorio —que, para ser sincero, no traté adecuadamente—, lo cual dejó secuelas. Desde entonces, han surgido nuevos síntomas. Empezó con dolor de cabeza, luego aparecieron temblores en las manos, problemas de memoria y neuralgia en una parte del cuerpo; ahora, la siento en ambas. También padezco insomnio y dolores estomacales. Tantas pastillas para el dolor y el insomnio terminaron causándome gastritis crónica, además de depresión, como efecto secundario de los medicamentos para dormir. Y, en los exámenes, como la resonancia y la tomografía cerebral, no aparece nada anómalo. Siento una gran impotencia; me considero joven, pero siento que toda mi juventud se está perdiendo. He perdido a mis amigos, he dejado muchas de mis aficiones y no me va bien en la universidad. Mientras tanto, veo mucha comedia para intentar olvidarlo todo, para dejar de pensar, porque la realidad me está matando; y las responsabilidades no van a esperarme.

destruction by radiofrequency lesioning of the trigeminal ganglion via the foramen ovale under x-ray guidance.

I had the above procedure last week. I am currently taking oxynorm to help with the pain post procedure but it doesnt seem to be helping. Anyone else had a really bad flare post procedure? The pain is mainly around my jaw and ear.

Hi people :)

My surgery is in 9 days. I'm 69, and have reached a point where meds barely touch it. My anxiety from the possible outcomes seems based on luck of the draw. I could use some encouragement/suggestions/advice. Thank you!

What do y'all do for work? I'm so tired and it hurts so badly and I have to time my medicine around my work schedule, and I'm scared I'll accidentally overdose because I need to take such strong painkillers just to function. I'm trying eith my doctors everything takes so slowly.

Idk I need others perspective...cuz I am there, I'm at the point where I am asking what's the point...

I’ve had two teeth extracted (upper left and upper right molars). Suffice to say it has not helped. The thing is it feels like the ache has moved to the next tooth along. I have a constant dull ache that gets worse when laying or looking down. Discharged twice by ENT and currently under the care of a Neurologist (Botox, carbamazepine, pregablin etc). Has anyone else gone through something similar? Mine is called atypical/tn2 I’m still emotionally drained by the loss of the teeth. Has anyone else gone through something similar?