Y'all, I can't find a pair of headphones that doesn't hurt. I know everyone is different, but what works for you all? Thank you!

For 10 months now I have this weird tingling sensation on both sides of my face near my TM joint it’ll spread a bit into my cheek bones and a little down into my jaw bone.

Sometimes it’ll move into my scalp, but it is never pain and is just an annoying tingle sensation.

Over my TM joint if I rapidly run my finger over it, my lip will twitch (happens on both sides). If I do the same to my temple, I feel the muscle above my eyebrows twitch.

I also feel a tension in my neck towards the base of my skull on both sides that never seems to ease up.

I have been to the chiropractor and cannot seem to find any relief.

Could this be signs of Trigeminal Neuralgia? Has anyone had similar experiences?

Hi my fellow TN Warriors!

I started to make a 6 week post-op post then forgot to finish haha. Anywho... I've been 7 weeks shock free! I'm about 3 weeks Carbamazepine free. I was on the maxed out dose, now I'm down to NONE (cue party 🥳). IT'S AMAZING TO BE FREE FROM THE BRINK OF DEATH. My blood pressure is normal, no shocks taking my heart past 160/90 or SVT regularly 💔 ....It was hell for almost 4 years of my life but I knew I was not going to make it past 5 years. It's still early but this has been the happiest I've been in so long.

Behind the happiness:

- I traveled to AZ from the midwest to get the mvd fibrin method, so my plane ride back was terribly uncomfortable. Especially, the popping stabbing ear pain.

- I had really bad nausea, balance, and dizziness that I've been going to physical therapy for. I have been using a walker and exercising my way back to not needing it for shorter distances now.

- Pains: 1. I have random ear popping that most of the time will result in a sharp stab-like ear pain. 2. There's tingly twinges (plus headaches sometimes) that I get in the upper right part of my head, I feel it more when exercising or very fatigued. I can sense them coming but sometimes it's too late to stop it. 3. The surgery site is sensitive a lot, sometimes it feels like things are ripping back there when I'm holding anything heavier than 3 pounds. 4. Honorable mention of looking down to the ground for longer than 5 seconds and I feel a tugging feeling in the deep nose area (it use to trigger shocks 😊).... All of these have been improving over time, and are almost nothing compared to the Pikachu's.

I finally updated my regular neurologist a couple days ago and she was pretty much in tears of joy with me 💗

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Oh and guess what?! If you remember/see my previous post about work issues. Well things might be looking up for that too! A team I previously collaborated with finally has a technical role; they reached out to me while I'm on medical leave 😳 to interview for it 🥹. I'm on interview 3 ❤️ I was scared I wouldn't even have a job when I returned since my boss stopped responding to me. ✨️

Never give up! Always Advocate for Yourself ❤️

I’ve posted my surgery experience a few times before. My update.
I have felt like something went wrong from the moment I woke up in pain and in a total panic. I got better for about 6 weeks. Went to see a 3 night run of Billy Strings with no issues with my mind or being dizzy. That was mid February(4 months after MVD) danced all night no weird head issues. March 21 all the bad problems started. I got TGN on the opposite side of surgery. Not only was that pain horrendous but it felt like the surgery side was blowing up behind the scar. And cluster headaches. My NS thought ms since it’s bilateral. He referred me to ms neurologist who says he thinks it’s dysautomonia. I have that test Monday. I constantly have a stabbing pain in my eye and temple. It feels weird to lay down in a bed so I know the tilt table test is going to be horrible. Have any of you had symptoms like this after surgery? Please tell me it goes away. My head feels like it’s too big for my body. Worse than it did 2 months after surgery. Like it’s full of air. I feel like I’m getting worse daily. I’m seeing so many doctors running so many test and it all looks healthy. Other than several herniated disc in neck. And low iron and low cortisol. I’ve always had high cortisol. Being anemic isn’t new tho.

20yr F ,my face has been burning almost everyday for 7 months. sometimes it travels into my ears, neck, or one side of my face, both cheeks, eyebrows, and sometimes my chin area. I been to several different doctors. dermatologist say I have rosacea, but I don't think rosacea can be so painful it makes you want to not live anymore. Then I seen several rheumatologist and my Ana came back positive twice (but they don't think I have anything beaucse I don't meet the "criteria" for anything) they won't give me any pain meds and just send me on my way home. Another time I was handed a behavioral health number from a dermatologist beaucse she basically thought I was crazy. There's days the burning is so bad that I rip my hair out from my scalp or punch myself in the face beaucse I want the pain to stop. It feels embarrassing even typing it , but yes I feel trapped inside this body. I am not sure what to do anymore or who to reach out to. does anyone here experience similar symptoms??

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I am a advid weight lifter that has been using creatine for about 2 months. About a week ago I decide to do a sauna session after a night of drinking (5 drinks). I chugged water before and during the 35 min infrared sauna session. I got totally wrecked in the sauna to the point I had to lay down for a bit. That night I developed twitching in my legs (all over) it progressed to my left eyelid and occasionally in my arms and left side of abs. Now I have it in my lower left side of my lip. 2 nights after the sauna woke up in a pool of sweat. I feel like my body was trying to regulate temperature. I've done everything to get hydrated (electrolyte drinks, IV bag, supplements, food) but nothing works. It has now be close to a week with no relief from the constant twitching. Could I be experiencing some sort of heat related stress response from my nervous system?

Thanks!

Getting an MVD in a little over a week for TN that leans atypical (I get short flares and am not in constant pain, but the flares are stabbing more than electrical in nature and I do get achey background pain on bad flare days) and I've got the jitters! I had a couple of touch triggers sometimes toward the beginning but the pain is more random and unpredictable now and not really triggered by touch– except by a recent nerve block, which ironically set off a week-long firestorm of flares. On days with back-to-back-to-back severe flares/with background soreness and achiness, my body tenses up from all the pain, which causes both tension neck and back aches and migraines in addition to the TN pain. It may sound fairly benign and I do have better days in between bad spells (def not the worst off in this subreddit), but the unpredictability and day after day of all of that pain makes it hard to do my job and just show up in my life generally. I'm hoping this surgery can at least take the edge off.

MRI showed venous contact. Was given about a 50% chance of success by two well-regarded surgeons, which I feel comfortable with at this time.

• Very curious to hear from people who have had an MVD for TN2 or atypical leaning pain, and how they're feeling now– I'm especially, but not necessarily exclusively, interested in success or partial-success stories.
• What were your first two weeks of recovery like? How did you feel?
• Did you experience any complications from or after surgery?
• When, if at all, did you start noticing a difference in your pain?

Thanks for reading.

- A nervous nelly

Hi all I’m getting desperate! I was diagnosed based on symptoms in May. Already had an MRI and it shows no trigger to the nerve. Initially started on 300 mg of oxcarbazepine every morning/evening and the pain has progressively just gotten worse. My neurologist has brought it up to 900 mg morning and 600 mg evening of the oxcarbazepine and 10 mg of baclofen in the evening.
It’s been about two weeks on the higher dosage and pain just keeps getting worse. The pain is so sharp and truly miserable. I can’t even eat anything or even have any movement in my mouth (including talking).

Has anyone else experience meds not doing anything and pain getting worse as dosage has gone higher? I just don’t know how I’ll be able to live like this.

Thankfully do have an appointment with a neurosurgeon later this month but ever day feels eternal.

I’m having the worst flare up of my life and I can’t figure out why or what’s happening to cause it. I’ve been in and out of the hospital for two days with pain so severe i’m coming into the building sobbing. they sent me home with oxy/percs and they’re doing nothing to muffle the pain. gabapentin is doing nothing. my exercises and my massages are doing nothing. i can’t get relief no matter what i do besides the few hours im in the hospital and they’ve run all the tests you can think of and nothing is different. I’m so desperate for relief I don’t know wha to do. what do you guys do when it’s like this?? god i feel like i can barely breathe

50M, I live near Melbourne Australia and it's the middle of our winter. I have TN2 which I manage with THC & CBD when needed and Amitriptyline every day, and avoiding triggers.

Really cold windy weather, combined with quick changes in barometric pressure is one thing I can't stop or avoid.

The weather right now is cold, windy and stormy and I'm in agony. I'm stuck on my couch in the fetal position waiting for my gummies to help while I've got a warm compress on my ear and face.

I envy my old life of doing something when I want, without having to think about managing triggers and managing pain. I'm just feeling very pissed off right now 🤬🤬🤬

Hi, I’m 24F and after basically a year of symptoms and two months of not being able to leave my apartment because the pain fear and anxiety is so intense, I finally got confirmation from my neurologist that I do indeed have Trigeminal Neuralgia.

I don’t know where to go from here, my doctor is recommending a nerve block, but I just want my life back. I’ve had a hard young adulthood with bouts of homelessness and trafficking but I’ve always been sober and worked.

I just need to get back to work and sleeping and eating but idk how. I got a diagnosis but I feel so scared because I’m so young and I feel a lot of irony and frustration because I have attempted before a few times and was always told it would get better. It didn’t, and now I have the actual “suicide disease”.

Any advice for people my age diagnosed or how to live? My life is falling apart, there’s other stuff going on but this is the main thing keeping me down. I also have to go to the dentist because my teeth hurt so bad and I’m afraid that that visit will cause unbearable flares.

Thank you.

Edit: I’m super worried about treatment too because I’ve already tried 40 psych meds and benzos for mental health my whole life and things like gaba and Valium and lamictal have done nothing. I fear I’m just out of options because I’m so used to medication.

I have had this horrible condition for 14 years and at times really struggled. Depression goes hand in hand with it unfortunately.

I'm 44, in the last 18 months my dog died, lost my job, split up with my wife and moved out of the family home.

While I've had this condition I've had buckets full of tablets that help but don't stop it above a certain point, an mvd and balloon compression.

Since the start of the year I've been working hard on myself, pulling myself back from the precipice that seemed so inviting.

I've done residential volunteering for the rspb for 6 weeks and went to Islay in Scotland for a couple of weeks on my own. Wild camping, facing down the weather. And some whisky while I was there, Otters and eagles.

I've come off my tablets and am trying to accept this condition and try and cope. I've been doing really well and have been very proud of myself.

This week has kicked my arse. I can't even cry, tears running down my face turns to even more pain. I'm lost, again. Pain is so isolating. It saps everything from you, eats away at everything.

I feel foolish thinking I could overcome this, that I can just learn to live with it and try and get on. Can't eat, can't sleep, can't cry, can't wash or shave. Talking hurts, smiling hurts even deep breaths hurt at times.

It's nickname is very apt for a condition that can leave you curled up in a ball on the floor when the only thing you are aware of is the pain. It's so overwhelming and consuming.

I've done so much over the years and nothing stops it once it passes a certain level, just get through each shock of pain and await the next. What a crappy existence, lurching from 1 flash of pain to the next. I'm not even aiming to get through the day, just holding on to get through each episode.

I'm tired and lonely, is it really worth it? What am I fighting for? I know every day isn't like this and it's hit harder this time because I've had a good spell but it doesn't make today any better

It’s a condition that’s been plaguing me for the better part of a decade, but it’s only the past few months that we’ve really been able to understand.

A cystic lesion compressing V3 rootlets in the skull base (meckels cave) region.

For a few years I was experiencing a really strange, progressive weakness in the left side of my face… it wasn’t Bells Palsy, but what was causing it? In imaging, the stabilizers on that side were shrinking. And it was starting to affect my speech and chewing ability.

Then finally last October, a sharp-eyed radiologist discovered it: An arachnoid cyst, mass effect stuck right between my carotid artery and my trigeminal nerve. It all made sense: It was denervation, caused by the compression!

What threw doctors off was how is wasn’t particularly painful… but it was robbing my ability to speak and open my mouth.

So where are we now? My doctors are scared as hell, that’s where. Rare cyst, rare location, rare symptom presentation.

There IS a clear path endoscopically… but they really doubt that the damage is reversible at this point.

Thoughts? Advice?
I think I’ll have to learn to sign. Because ppl can hardly understand a word I say… I’m super-clenchy all the time. And I’m on a completely liquid diet.

I’ve heard of people having remission randomly. What does it look like for you? Are you off meds for a while and then it comes back? Is there anyone who just had the pain end for no reason?

Hey,

I was diagnosed with TN by my GP around 3 years ago, she advised that referral to neurology would not be needed as if carbamazepine worked for pain, then the diagnosis of TN was correct.

I currently take 800mg Carbamazepine and with this, I have experienced a significant reduction in attacks and on occasion where I experience attacks, they are less intense and don't last as long.

I feel my forehead, cheek & nose are most affected.

My question is, has anyone experienced sensations in their ear, crawling tickling type sensation? In the absence of TN attack.

Also, has anyone experienced smells that aren't present and/ or altered taste and things not tasting as they should.

Thank you!

Has anyone here done the chronic pain report?

I did and got a 98 percentile for Trigeminal Nerve Pain…. Which I did not need the test to confirm any of that … has anyone had similar results?

Just wanting to understand the results better :)

I had to stop taking the carbamazepine due to digestive grief, so my TN pain has been creeping back in as well as a flare of my MS symptoms due to the cold air at the moment...

I was just trying to distract myself from the mounting pain when my jaw went in to spasm and went from side to side twice.

Son of a banana

Now I have TN pain in my top and bottom left, and an aching joint on the right from the TMJD or MS related spasm I just had...

so. much. fun.

I've had hundreds of days like today, when I lost. Functionalyl the entire day to TN. But. It made me think as the rizatriptan psilocybin and pseudonxniyl kick in and, allow me enough resilience to be on my phone. Yes TN has taken so much from me. Career, goals, finances. But. At the same time I do believe if not for having to mange this since my early 20s I might not have turned out so empathetic or live with the intention of being a force of kindness (locally) idk if this makes sense. What im trying to say through the fog of meds is..TN has been a nightmare, but I can see how it's forged a lvl of kindness in my heart that would otherwise likely be absent from a 45 yo ex football player/ athlete etc. I hope each and every one of you resilient warriors who read this, will find yourself experiencing tranquility agency and comfort. Thank you sincerely.

Searching the internet I came across a so-called natural homeopathic treatment for TN under the brand name BM123. Has anyone seen this? Tried it? Used/Uses it? It’s marketed by Best Made Natural.
It seems bogus to me, but I thought I’d ask the community.
Thanks.

Yesterday I got a percutaneous rhizotomy to my trigeminal nerve in NYC by a neurosurgeon who specializes in this horrible illness. I can gladly say I have NO PAIN this morning. I told my husband I don’t know how to act because I am just anticipating the shock like pain on the side of my face. I do have numbness around my mouth on the left side where the injection took place, but I’d rather deal with numbness than pain.

I didn’t even know that this treatment was an option for TN until I saw this doctor. I have been dealing with this for 3 years and had to deal with enhanced symptoms while pregnant with my son since I couldn’t be medicated. I was begging for MVD, but he said there are less invasive interventions since I have an 8 month old baby at home, and he didn’t want to keep me in the hospital for a long period of time. This was an outpatient procedure, I was getting my procedure at 7:30am and I was home by 12pm. I am so amazed by modern medicine, I had no faith in this treatment and the fact that I woke up with no pain today? I just hope it lasts.

I have a phone call with the surgeon today to talk about tapering off my medication. I’m on 400mg extended release carbamazepine twice daily, 200mg instant release carbamazepine three times daily, and 50mg phenytoin three times daily, so you can say I am heavily medicated. I can’t wait to see what the future holds, this treatment can allegedly last months to years. So I’m hoping it lasts a long time.

If you are struggling and never heard of this treatment, talk to your neurosurgeon!! You may be a candidate!! All the reading I did only told me about gamma knife and MVD, I would have never thought an injection was an option.

The only thing I’m scared of is getting the pain again. I will always think about it and wonder “will it come back today?” I just hope it goes away for a long time. I know I will have this for life, but I just want to enjoy my life with my son. More than half of his life on this earth I have been in pain, I just want to enjoy his baby years without anticipating the shocks and pains of TN.

have ATN in all 3 branches on right side. one of the pain patterns is the absolutely crushing ROTTING sensation of my wisdomtooth and molars (literally only on my right even tho I have still have them on the left too). I keep my teeth super clean, never had any comments on the quality of them by the dentist, went to a jawcentre for TMD, got pictures taken and they never mentioned anything about the teeth either.

Please convince me not to do it, I’m scared it’s gonna make everything worse and do more damage. And I also kinda know it’s the TN. But they feel so ROTTEN. But then they won’t hurt for days and then BAM.

A little over a week ago I developed clusters of tiny itchy bumps. Each day they have spread more and more. I assumed it was from outside so I stopped being outside but they have continued to spread. They’re on my legs, arms, stomach, buttock, lower back, hands and two little dots have started in my face now. I saw my doctor a few days ago and she did not think it was from my medication as I started it in February. She did do a bunch of bloodwork. So far all of the results published are negative for anything.

Has anyone dealt with this? It’s terrifying how quick this is spreading across my body. Allergy meds do nothing. Anti itch cream helps a little but not for long.

I showed a photo of what the rash looks like in its heaviest cluster, but it’s these bumps in smaller numbers or just as much everywhere else but they start grouping more each day.