Do folks get flare of TN/TMJ when they get dental cleaning? Hygienist said all is good. Four days later still having gum and TN pain.

I smoked a weed that I brought from the street which caused me twitches not only in my face but all over my body and Trigeminal neuralgia for the first time it's been 14 hours now and the Trigeminal neuralgia still here what's going on please is it gonna go away i literally panicking please anyone who knows

anyone here from australia have any neurosurgeons or neurologists they can recommend? preferably if you've had successful MVD surgery or treatment, i'd love to hear your story? i'm based east coast NSW so would prefer there, but open to travelling for the right treatment option!

I have fond in some medical journals that trigeminal neuralgia including atypical may respond to combination of drugs ie an anticonvulsant like Gabapentin or tegretol to a CRGP medication like Nurtec used for migraines. Other drug combinations have been found successful in alleviating pain. Anyone on the forum been successful with a combination of two different drugs and if so what were they?

I’ve been to the pool a few times lately and noticed I felt pain-free. This afternoon my TN was at about 5/10 and I drove to the pool to test the theory. Bingo. In the water, no TN pain in my face. Under the water, floating on my back, water in my ears, in the hot tub, NO PAIN! This has continued for the most part for the last 2 hours being home from the pool. Has anyone else experienced this?

Does TN affect anyone’s tongue at all? Yesterday out of the blue I got a shock on the right side of my tongue. Now the back of my tongue feels weird, like there is sandpaper there or I burnt it with hot coffee

Hello, I hope ur all doing well✨ three years ago, I had my wisdom teeth extracted. After the extraction, I noticed that there was numbness in the left side of my tongue and had very sensitive gums on the lower right side. Doctor said it could be TN but no medicine that I’ve been given has helped and I’ve never really had a flare up. It is not a constant pain, only when the gums are being touched. I have a cavity on that side and every time a dentists tries to insert a needle on the lower right side of my gums I feel the worst white hot pain I have ever felt. It’s been like this for three years and it feels so hopeless, nothing has worked. Just wanted to know if anyone has experienced these symptoms before since I haven’t heard them be associated with TN too much.

Did any one use EMT (Electro magnetic technology) to heal TN?

I suffer from supraorbital TN2 because a brain tumor damaged the root of the TN.

I have tried several medications, from Tegretol to Lyrica, and they all stop working after a while.

So the doctor recommended that I have a supraorbital nerve block so that I could at least get some pain relief. If I had known what was going to happen, I would never have let them do this procedure on me…

The neurosurgeon injected lidocaine into my eyebrow area, which left it a little swollen for a few days. I had relief from the TN pain for 10 days. Then the pain gradually returned, but that was to be expected.

What I didn't expect was that after a few weeks the pain got even worse. Now, in addition to the pain, I have a feeling of unbearable tightness and pressure in the eye, forehead and scalp area. As if my head were being crushed by an invisible weight. This tightness is so unbearable that I feel extremely fatigued, I can't even think straight anymore.

I think poking a nerve that was already sensitive with a needle was not a good idea. I REALLY regret having agreed to do this nerve block.

When it was just the burning pain of TN2, I could tolerate it and move on with my life. But this tightness in my head and fatigue are making me very weak. I am unemployed and now that my TN has gotten worse, I doubt I will be able to find a job any time soon.

I am currently taking topiramate without any improvement. I will only go back to my neurosurgeon next week and I don't know what he will suggest for my situation. I am lost and with an unbearable pain in my head that makes me want to end my own life.

I think I’m having a flare, other than the gabapentin I am on is there a point of even going to the ER? They can never do anything anyways I’d rather just rest with my heating pad. It’s day 4.

I always considered myself resilient, as I’ve pushed past many ugly, gutting traumas and come out on the other side, but TN is testing me like nothing I’ve faced before. I’m scared by this pain and I have such a high pain tolerance that at 14 I let a guy brand a design on my arm like a tattoo and barely flinched. Dumb I know. But I say to compare, that this pain is hell. It’s getting worse and I’m nauseous/shocked by the pain sometimes.

Neuro says it’s atypical compression so I’m not a candidate for MVD. Basically got my 45$ copay to say he can’t help (he’s mainly a surgeon) GP is managing my meds now. Facial pain clinic cannot see me until June. Gabapentin 200 mg 2x a day did not work. Tegretol gave me ataxia , numbness, and made me drop things all the time. On trileptal now but it’s not working yet (~15 days).

I’m incredibly isolated at this point in my life and atm living only out of obligation to a dependent who I love dearly.

The pain is so loud. I only have one or two days a week it recedes into a whisper. I don’t think doctors give a damn. Getting too depressed to advocate for myself.

I have atypical TN and had a really bad pain week last week. The pain was really severe in the angle of my jaw, back of my throat, the occipital region, and sensitivity over my whole scalp.

I went to the ER due to this and other worsening symptoms and very surprisingly saw a nice doctor. He offered to do a nerve block in my occipital just to see and it's seemed to have helped. The scalp sensitivity went away within 24 hours, the occipital and throat pain calmed way down after about 48, and even the angle of my jaw pain has improved quite a bit.

My question is: Has anyone ever had a nerve block work with just one injection of steroids and lidocane? I almost doubt that it was the shot and that it conveniently calmed at the same time, but I had "zaps" today in the angle of my jaw and they just felt like slightly painful vibrations?

An oral surgeon resident working with my normal oral surgeon had mentions occipital referred to the trigeminal, so I'm wondering now if maybe she was on to something.

started taking 800mg 5 days ago and i'm feeling so weak i sleep all day, the dizziness is more like a vertigo walking is like i'm in a ship in a storm... i know it can decrease sodium so i'm eating well and avoiding drinking too much liquid but does any of these symptoms actually go away? the most stressful is the weakness, like holding my phone to write this already feels like too much strength... please help

I need some advice! I have TN2/PTTN from a bad root canal. My pain used to be constant, but now it has subsided a lot. I still have low grade pain/ discomfort but not like it was before. But I do have periods where the pain flares up, and it feels like it's due to inflammation or irritation of the nerve. Well, I am considering IPL laser treatment to deal with some acne scars and discoloration on my face, but I don't know if it will cause a flare. I was getting chemical peels, but the application process where the lady touched my face and rubbed the solution on for multiple layers really exacerbated my pain. It wasn't unbearable (beauty hurts, right..), but the issue is that when I had my next one scheduled, I was in the middle of a flare from something else and so I had to cancel. So I went instead and asked for a consultation about a laser treatment, because I was thinking that maybe since it's not somebody constantly rubbing my face, it might be less irritating. They did a small piece of my face just so that I could see what it feels like and see how my face reacts, and it just felt like a rubber band snapping, but wasn't too bad. It wasn't where the nerve damage is though so it's hard to tell how it will affect my pain. I also want to mention that I am biracial, so because I have a darker skin tone, the laser setting is pretty low. Does anybody by chance have any experience with this? I know it's a longshot, but any advice would be appreciated.

When I first got symptoms of TN in 2012 I didn’t get proper help but in 2014 I was taking carbamazepine. I came up to the max dosage of it and I was like 27.

Six times in a month I woke up with a wiped memory for like 15 minutes. Once I woke up with a strange man sleeping next to me in bed. He was sleeping safely so I realised he trusted me and I was trying to figure out if we had just met or if we had a relationship while figuring out that I wasn’t locked inside the room or anything. After a while I realised that was my boyfriend of four years.

Another time I woke in the night and when thinking of places I could be I got no suggestions, I had no places in my head so I assumed I was in a hotel and forgot. A badly furnished hotel since I was bumping into things and not finding a lamp.

When I found a lamp I realised that I was inside a home and I freaked out a bit, waking up in someone’s home with a wiped memory is freaky. After a while I realised it was MY home and all was chill.

When I told my neurologist he was like “oh you have dementia from the carbamazepine”. I stopped taking it and the dementia went away but I’ve never been able to google my way to anything suggesting that this can even happen.

Has anyone had a similar experience?

Is anyone going through this? Daytime it’s fine but every damn evening I start overly salivating! It’s not like I’m drooling but I get that uncomfortable feeling when saliva pools under your tongue, so you do that sucking thing in your mouth where you swallow the saliva?

And every time I do that it hurts badly because my teeth already hurt to begin with! This is gonna drive me nuts!

I’m experiencing repeat severe flare-ups almost daily this week and my pcp has added 200 carbamazepine to my 300 Lyrica daily.

I see posts about sodium issues and am wondering at what point those start to show up on carbamazepine, and what the monitoring process looks like. (Assuming bloodwork, but how frequently etc).

Thanks tons Reddit!

Has anyone ever experienced a severe ‘lump in the throat’ feeling on lamictal? I went from 100 mg to 200 mg and 3 hours later I had a sudden lump in my throat. Not like an allergic reaction, almost like acid reflux, but no other heartburn symptoms. I split it 100 mg AM and PM and it was better but still happens sometimes. Tried to go up to 150 mg, same thing. If I skip a dose it goes away completely. It’s so severe when it happens I can’t focus on anything else, lasts for hours. No amount of heartburn medicate help. I have already been on Carbamazepine and Oxcarbazepine, but had low sodium and cardiac symptoms, so I had to stop. Lamictal is working, so I do t want to stop if it will go away.

Just received a copy of a letter my neurosurgeon has sent to my GP, confirming my trigeminal neuralgia diagnosis and that I am on the waiting list for MVD surgery. In the letter, he has listed all of the possible risks and even though we did discuss (most of) these previously, seeing them written down is terrifying! I feel sick just thinking about the surgery, and don't know if I can go through with it but also my pain and symptoms are so bad I can't not go through with it. I don't really know why I'm posting/what I'm hoping for - I guess does anyone have positive/reassuring MVD stories they can share?

I can’t do this shit anymore what do I have to do just to get this to stop I can’t take this

I have had this pain in my mouth for almost 30 days. It feels like someone is pushing on the roof of my mouth. It comes and goes, but happens every day. Sometimes it is quite painful. It feels like dull throbbing pain, sometimes it becomes sharp. Like a cramp that you can't stretch out. Sometimes it moves up into the bridge of my nose, sometimes my jaw is sore. Sometimes it feels like I've been punched in the nose. Sometimes it stays in my teeth, and sometimes it spreads out along the roof of my mouth. Last night I got chills, minor panic attack, and tingling in the right side of my forehead and cheek, and then across my scalp. On 3 occasions the pain has kept me from sleeping. When I wake up, typically I am without symptoms, and then sometime during the day they return, even after I took a preemptive ibuprofen.

Went to the ER a few days ago and they took a CT scan and said it was clear. Very typical, no masses or blockages in my sinuses or anything they could see. The Physicians Assistant at the ER said he thought it was trigeminal neuralgia. He prescribed me 800mg ibuprofen every 8 hours. Sometimes it removes 95% of the pain. Towards the last half of the 8 hours it often returns. When that happens I take Tylenol to try to squash the rest of the pain.

I've stopped wearing glasses because I felt that they were too tight. I used to wear glasses and headphones at the same time and that combo would make my whole head hurt. It's possible that the combination has triggered TN, but I don't know. They said it was impossible to detect, and that they had to rule out everything else to diagnose me positively. They tried to get me on gabapentin but I declined because I don't want to start that if it isn't TN. My dad took gabapentin for nerve pain in his arm, and he said it badly affected his memory. He broke his arm a few years ago, and when they set his bones and put pins in his arms, it somehow healed his neuralgia. So he stopped taking gabapentin. My mom has taken gabapentin for almost 26 years, and sometimes she gets her words jumbled up.

I had dental work 6 weeks before the onset of my symptoms. I went to the dentist and she didn't seem to think the fillings were the cause of it. But she declined to take X-rays to see if maybe she made a mistake.

I'm not looking for you to diagnose me, but I'm looking for a comparison, your opinions, to see if my symptoms line up with what you all have experienced. I'm scared. I have anxiety that the pain will return. Male, 29, light smoker. I don't understand why I would develop this at my age. Every other medical test I've ever taken has been normal, and it appears I am in good health. It doesn't seem fair.

I've been lurking in this subreddit for a few days. You guys are very brave, and I wish you all a pain free Thanksgiving and a pain free life.

Does anyone take topamax for Trigeminal Neuralgia I’m curious? Thank you in advance!

I’ve had to reduce my oxcarb. The pressure is coming on and it’s turning to heat too much, which was a thing before I got on meds.

My pressure is pretty much constant, except when I’m asleep. It’s not something that’s going to kill me, but the threat of heat is difficult to take. It’s kind of like the threat of stabs, which was a terrible part of my pre-med/post-onset life. The stabs themselves were too much, but it was the constant threat that was driving me crazy. It’s like my body was obsessed, and my mind had no choice but to follow. I see this starting with the heat. I had a terrible time last night just getting myself together to go get in bed, and the falling asleep part was rough. Thank god for the peace of sleep.

I’ve reduced caffeine. Is there any chance the reduction is making it worse?

Hi everyone! Mild pain feels like needles and comes in and out for the past two hours or so. Right in the space between my nose and cheekbone. Tingling in my nose too, like I need to sneeze. Does that sound like first time TGN? Have never experienced this before - female 43 yrs old. Thank you!

Does anyone get lip swelling or numbness and tongue swelling? I keep thinking I’m having allergic reactions because after my throat gets tight, but my immunologist thinks it’s my esophagus. I can’t tell what’s what anymore.

I didn’t realize I wrote this until I started going through my notes. I read it to my daughter and she said I should share with my TN Community:

Little Spiders 🕷

Can they see these little f#$ because I can feel them!

Their feet are made of icepicks.

The tips so evily laced with piercing stabs and shocks sent from hell. When they're not scurrying about my face, I think they're trying to drill into my brain, or finally accomplish the game of, "who can make her eye pop out its socket!"

They move about my face freely, daily! Wait, I think they're spinning a web!

I can feel the tingling sensation spreading through my face! My God, my lip!

CAN YOU SEE THEM?!

Of course not! But I can feel them!

Hi all,

I've noticed a wired pattern with my TN pain during the week. It seems like I feel ok Monday to Wednesday with only a few mild zaps and tingly sensations. But around Wednesday evening Thursday the pain ramps up to medium/ severe zaps every few minutes. My routine doesn't change during the week so I'm cant figure out why the pain does this every week. (I'm still waiting for MRI results so no idea what's causing my TN at this point)

Anyone else have weekly patterns like this? Or daily patterns?

Hello all l! This is an update I had a post about my wonderful grandma who very recently went through an incredibly draining flare up. Which has been stressful for her and us, just managing her symptoms for the last 3 weeks. And with high hopes of the MVD surgery that occured today.

She had her surgery at Mercy in STL, with surgeon Dr. Sweeney, who has speciality in TN with other neuro diseases. In the pre meeting with him he said she had classic TN and approved the MVD surgery for today. I was not in the meeting sadly so I do not know the specifics of his MRI breakdown if there was clear decompression along with other exploratory options. So I was under the impression that when my sister said he said she had classic TN, I was assuming classic decompression also noted on the MRI. Which I'm doubtful of at this time.

So fast forward to post surgery, he informed the family that there was no major vessels(or smoking gun as they described) for the cause. So he "moved around some vessels that may have been irritating it".

This has me concerned that this infact surgery was a bust before my grandma is out of sedation. I hope you all have better knowledge and experience with this surgeons report. And that this would potentially alleviate her pain.

My thought to this now is she is at an older age and this has already been very depleting on her independent ego. I am afraid the suicide disease has won this battle. That there may not be another chance for another MVD or gamma knife at all due to her age and weakness issues(from the side effects of oxcarbazepine, vimpat, and gabapentin). I'd love some knowledge from someone who has had a similar experience!

Thanks!

Hi all, 5 weeks ago had 2nd MVD on other side. About 90% hearing loss/muffled. MRI in a week to see about auditory nerve complication. Still taking hydrocodone. Way worse than the other side MVD. Dripping CSF from nose. Anyone have any insight? Other side was a piece of cake.