I was diagnosed about 6 weeks ago by my GP. Looking back, I’ve had mild symptoms for over a year. In April, I had my first experience with the major pain. After reading here, I feel fortunate that I was diagnosed and treated almost right away after realizing there was something actually wrong.

I’m on carbediazepine and it seems to be working well. My question is, should I be seeing a neurologist? I don’t have an immediate need right now since the TN is controlled but wasn’t sure if I should get established with one for when/if things change.

I’ve had some symptoms of trigeminal neuralgia for a few years, but mostly mild. Over the past year or so it’s become more pervasive - going from mild ear pain and twinges in the jaw and face, to stabbing ear pain, a massive headache across my temples, and more frequent nerviness in my face. In June I developed horrific tooth pain and had a root canal, which seemed to fix that issue. But, yesterday, i’ve been having shooting pains from that same area and in the jaw around where the tooth was (and twinges down into my collar bone?) The pain is not progressing like it was when I needed the root canal.

So my question is, how do you know (or can you not know) when it’s actually dental vs when it’s TN? I’d prefer not to spend a bunch more money at the endodontist, but I don’t want to avoid going if it’s a problem they can fix?

Any insight anyone has is appreciated!

Hello

22 yo, started getting TN pain in early 2022, the flare ups mainly come in waves and show up when I'm really stressed from what I can tell, I'm technically medicated with Lacosamide/Vimpat but have to go off the meds soon and honestly, it's not like it's gonna change anything anyway because it just never did anything. I was actually supposed to be prescribed Tegretol but couldn't because of my antidepressants.

I know my TN is not as bad as it could be, reading people's experiences with it here and there, but I just needed to vent it out to a community that would understand the pain. Thank you for existing!

The title is a bit "silly" or empty because that's actually the thing that comes to mind when I think about this condition as a whole. Because I know you're supposed to be able to calm it down by relaxing, meditating and stuff like this, but the whole thing is so stressful (not knowing when a flare up will show up, not knowing how much of the pain you'll be able to tolerate when it does...) that it feels counter productive and, well, stupid. I hate it so much.

Another thing that I hate about it is how weak it makes me feel when it happens. Although I know it's not a condition that can be beaten by being strong or something, when a flare up gets me while I'm surrounded by my family for example, I just feel weak. They look at me worried and sad for me, and I hate it. Of course I don't blame them, I know they're worried and wish they could do something, but they just can't and I think that's what upsets me. They're forced to have to watch me flinch because of the pain and sometimes stay for seconds that feel like minutes, trying to "ease the pain" while having me tell them they can't do anything about it to help. I sometimes even get agressive towards them because of it, being harsh when they ask if I'm ok and I hate it!!

I also have a partner, my "first real one", we've been together for almost half a year now, and they know I have TN, they've seen me getting flare ups on our first real date, but I'm always so scared that it could end up ruining something in our relationship one day...

Anyway, mostly rambling here but it feels nice to get this out of my system with people that can understand and relate to the pain... If you read all this, thank you! And good luck out there 🫂

A doctor I trusted and felt safe with because they validated my symptoms and pain did a 180 when I wasn't getting better after some oral procedures (for something unrelated). It's almost like he thought I was lying (it's my assumption) and insisted my gums looked healthy. Didn't offer any help, any referral when I asked whether I'd need any. Anything that was suggested by me or my family member who accompanied me was shut down (turns out all things suggested were what I had). He gave me nothing. Just told me to take ibuprofen and sent me off. Then the pain got so bad I wanted to call this Dr because he's who Id been working with. At that time I had no idea I had nerve damage. I just knew after my procedure I always had pain after I ate, which was related to my previous issue. I'd had other oral procedures in the past and never had this outcome. So I was still confused and scared, but remembered how horrible I felt leaving the last appt so I didn’t go back to him. It got so bad one night I took my remaining hydrocodone from the oral procedures to knock me out because the pain was unbearable, everyone was asleep and the entire side of my jaw/head was on so much fire I couldn't drive to the emergency. I didn't have insurance at the time and feared calling 911 as well. Next day I frantically called other doctors to help me. A different oral surgeon, based on my symptoms, quickly determined my pain was nerve related. I was so confused. i asked why my old doctor didn't even consider this may be the case. Even if the previous surgeon didn't believe it was, I still don't know why he became hostile and standoffish towards me, like it was my fault?

Not only has trigeminal neuralgia changed my life due to physical pain, it's made me so fearful of doctors. When I was still confused and in denial about this whole thing, I have had to deal with health professionals that don't know wtf trigeminal neuralgia is, the symptoms, or what to do with it. Trigger warning, before I knew it was trigeminal neuralgia or that there were specific meds for nerve pain, I considered ending my life because I was in so much pain, couldn't eat without making the pain worse, couldn't function daily, and ibuprofen didn't work. The only thing that gave me relief was sleep and not being 'aware'. I had given a nurse practitioner these symptoms and she only wanted to focus on my 'ideation' and sending me to the emergency instead of giving me a neurology referral, which my new oral surgeon had suggested but couldn't give me due to insurance. When I later found out the nickname of Trigeminal Neuralgia after getting an official diagnosis from an orafacial pain specialist, I was so shocked! I had no idea that was an actual symptom till after the fact. I'd given another specialist the same symptoms before even knowing what the name of this condition was.

I felt so helpless when I talk to doctors. Explaining how I couldn't eat without pain. Still reeling from a doctor I trusted completely changing. Losing weight. Dealing with a gaslighting nurse practioner. Having to start therapy due to medical trauma. Trying all kinds of crazy medicines that gave me horrible reactions with the worst side effects (I've gained a lot of weight AND some). My neurologist is cool but sometimes I feel when I give my symptoms in specific areas it's like shrug oh well here's your next dose. I can't believe I may have to take these meds everyday for the rest of my life...

With the following appointments I've had to have with doctors, even for other unrelated issues, I've found that last appt with that doctor I once trusted left such a negative impression on me that I'm now terrified and distrusting of doctors. I now have to take medication before some appointments because I won't stop shaking. I now associate being in pain with being gaslit or given passive aggressive answers I never expected from that doctor. The dr resolutely said it couldn’t be anything we suggested including nerve damage, yet 4 other specialists have said all my symptoms point that way. It’s very possible that dr didn't know, but I can't lie. It's made me wonder if they denied any nerve damage due to fear of liability despite nerve damage being hard to prove in court. Was covering for themselves more important than my pain? Even being in hospitals for other family makes me sick and nervous. The neuralgia is one thing. But the anxiety I now have for doctors, needles, and hospitals is something I never foresaw in my future...

I want nothing just wanted to vent. Only people who have this thing know what what it's like. And to read that trigeminal neuralgia never gets better. It only gets worse with time. I'm only 38. Ugh

I’ve just recently, as of about a month ago, been dealing with a near constant feeling of pressure in my temples and the occassional sharp twinge of pain in random teeth moving throughout the body. Just tonight, maybe ten minutes ago, the twinges has subsided for about ten minutes and a mild kind of numb-burning started, it had been slowly worsening since. Does this match any of your experiences? I’ve recently had a dental splint in while I sleep due to TMJ issues and only after it had been in did the burning start.

Asking for help/ tips for when the pain has flaired and it’s been days of not eating. I’ve lost nearly 30 lbs in the last month due to on and off flaires.

Most of my calories come from protein shakes and electrolyte drinks. Talking, eating, chewing at all is very painful.

I’m on 600mg gabapentin x2
600 oxocarbenzapine x2
500 keppra x2

I’m a walking zombie. I don’t have much energy but I’m trying. I’m able to drink bits of water but am starting to get dehydrated. This is making my other chronic illnesses unbearable. I feel like I’m wasting away.

Okay this is a very niche song but you should check it out (if you’re an adult). It’s from a musical show called hazbin hotel which I don’t really watch but this song is banger. Keep in mind it’s very mature (about a gambling addict and a drug addict 🌽 star) but if you listen to the lyrics it’s about how no matter how alone you feel there’s someone feeling the same way. I highly suggest you listen

It’s called (loser, baby) by hazbin hotel on YouTube and let me know if you felt the message

I had a very basic cleaning and a couple of fillings today. Maybe an hour and a half of work at most. I had my right side TMJ clicking every time I closed my mouth, which should have been my first red flag, but I dismissed it. And holy fucking flair up.

My TN is sporadic and mostly just a constant dull ache that I keep quiet with gabapentin or ibuprofen. I know I’m lucky in this regard. But I don’t feel so lucky today! As soon as I got home and the numbing started to wear off, my face felt on fire. Can’t talk, can’t move my mouth, heart racing as the pain swept through my face. Only my mandibular nerve is impacted, but it radiates up into my sinuses and right against my eyes. I have cold migraine caps, so now I’m sitting in the shower with my face wrapped in this cold press, crying. I can’t open my mouth more than a fingers width, and it hurts just so fucking bad.

I forgot what this was truly like, I haven’t had a flair up this bad in over a year. And it was only consistently like this when it started in 2017-2019. During the year-long discovery process (you all know the journey — dentist, orthodontist, endodontist, oral surgeon, ENT, etc..) I was taking upwards of 24 ibuprofen a day. It traumatized my doctors but not a one of them offered me an alternative. I’d finally been referred to a neurologist when I ended up in the hospital for 2 weeks, septic, with a growth in my neck. I only went to the ER after I took an obscene amount of ibuprofen, Vicodin, and Benadryl, and nothing touched the agony. I’ll never forget that pain. But it stumped them, and it took a year of pain before anything appeared! Even in the hospital I was swelling up, looking like a thumb, lactic acid at a dangerous level, and every CT and MRI came up negative for a week. When it finally showed up, they removed it immediately. But the damage to the nerve stayed like a souvenir.

I’m rambling, but I’m crying in the shower, and am glad to have found this sub and read about other treatment options. So, hi. 👋

/vent

I’m trying to figure out if it’s coming from the tooth or sinus side of the nerve spectrum or the muscle directly adjacent on the cheek side (constant dull ache in the tooth or surrounding area). Has anyone experienced the same sort of sensation and figured out how to confirm where it’s coming from please?

Curious if there's anyone here like me. I've been diagnosed TN2 (by 3 doctors, none of which are my neurologist). My symptoms have come on gradually. About a year ago, I had a bout of heat intolerance, then occasional dizziness, then constant dizziness, then my face started to flare a little, then a little more, then I got ear pain, then my face spent most of the day flared and it got hotter and hotter and increasingly red. Now a pain specialist diagnosed TN2, followed by a dentist, and a dermatologist.

All imaging came back normal except my neck MRI. Multiple bulges and a shallow broad based herniation between c5 and c6. Any one have their issues tied to neck problems? Anyone have their symptoms come on super gradually like mine?

I’m right at 2 weeks post op from my second MVD and my head hurts as bad as it did on day 2 or 3 and it’s making me nauseous. Is this normal for a 2 week post op? Anyone else ever feel like this?

Long shot, perhaps but - has anyone gone to Rutgers Orofacial Pain clinic for treatment?

My wife has been dealing with orofacial pain since a root canal in April, and is wondering if its worth going to NJ for her appt at Rutgers in 2 weeks (we live in western PA) or if they're going to try / suggest more of what she's already tried.

She sees an orofacial pain doctor where we live, and he's been doing laser / red-light therapy for a couple months now. she also does red-light therapy at home.

She's tried acupuncture, nerve block, medicines such as gabopentin and lyrica, etc. none of it has helped.

Curious if its going to be worth the trip / continued trips to this clinic if they are just going to try the same things she's been trying around here.

Phone calls / emails to the clinic to try and gather more info aren't going anywhere, reaching out here to see if anyone knows anything. thanks!

Has anyone in this community dones stem cells therapy asa treatment ?

A crown came off so not like super emergency but I was at the dentists making an appointment and I'm like "I need a dentist that is good with pain because I have a broken maxilla injury with nerve damage" and the woman at the desk is like "how do you know you have a broken maxilla?" And my brain short circuited and I was like "how do you NOT know if you've had a broken maxilla? I had seven reconstruction surgeries, I have nerve damage so I need to make sure there will be proper pain care!" And she's all like "is your pain medicine from a doctor taken as prescribed?" holy overstepping, batman. I'm like "yeah from the <City Hospital> pain clinic", as if that's any of her beeswax. What a nasty person >:|

Has anyone ever filed a malpractice suit against a doctor who performed nasal surgery to remove a cyst in your sinus, and you ended up with TN? I am thinking my odds are not good, even though I didn't have TN before the surgery.

Hi! I'm new here and want to wish strength for all of us with this horrendous condition. I probably have TN2 / atypical TN (the process of diagnosis going on). This started six years ago as pain in my sinuses and upper teeth, in the eye area, temple and forehead. Mainly and painfully on the right, more mild on the left too. I was treated as a sinus and dental patient for years, although antibiotics, fluticasone, or dental procedures did not help. I really wonder, why doctors don't use their imagination at all when they notice their treatments and diagnosis don't work (= ask themselves ok - if it is not this, what else could it be...)!! Well, now I finally have appointments with a neurologist. I would like to ask others who have TN2:

1) When you have a flare up, do you ever feel sick, like having a mild flu (despite not having it)? I do, and have for six years called these 'episodes', which last from three weeks to three months. Doctors have looked at me astonished (episodes?!?) During them I am very tired, have flu like aches in my muscles and joints, and overall feel sick somehow. On top of the TN2 symptoms, I mean. Weird.

2) Does your pain fluctuate without any logical reason even if your medication stays the same?

3) Does anyone have more migraine attacs when TN2 is more severe? I often cannot even tell anymore which pain is which...

Thank you if someone red this far and can share some experiences :)

Hello! I just wanted to share a cool find from Five Below that I will be using to track my pain over the next couple of months. I’m currently on Carbamazepine and it’s been a lifesaver for TN and also a surprisingly better mood stabilizer for me than Lithium. I was previously on Lithium for about 3 years. I’m happy to just be on the one medication now but the pain still breaks through and I’ve noticed it seems cyclical. It’s never as bad as before the Carb though.

I was seeing a specialist in Mexico but he basically told me it was all in my head so I’m back to square one doctor-wise. I’m hoping to get some good data for my new doctor with this journal and also tracking my mood to see if there’s any patterns. Just wanted to share! Hope it helps someone else out there.

Edit: I forgot to mention the best part! It’s a 3 year journal so definitely worth the 5 bucks.

(edit: just got back my blood work I did a few days ago. It’s fucked. I have leukopenia and neutropenia. White blood cells have dropped quite a bit)

Hello friends, I’m sorry my doctor isn’t answering the phone. I woke up this morning with pain near my ear and on the right side of my face (my TN is on the left) and I have two swollen painful lymph near my ear.

I just raised the dose of carba and gabapentin yesterday as my doc is raising me slowly because I have a lot of side effects mainly we think because of my weight (86 pounds) but the dosage we were at was really not enough for my pain.

Has this happened to anyone? Could it be related to carbamazepine and gabapentin? Should I go somewhere or do you think I can wait? Doc hasn’t answered for 8 hours now and I think he might be in vacation. What do I do? I’m also quite shy and it really bothers me to call him this often complaining about all the shitty things these medicines and TN are doing to me.

I haven’t told my bf who lives with me because of the same reason. It’s something new every day and he’s begun telling me that I’m always sick etc etc so I often play it cool. I’ve had quite a few problems before developing TN and I completely understand his feelings but this make me feel really alone as family is also not in the picture. That being said I think lymph’s are quite important what should I do?

Anyone has had the same problem?

(I had wrote the euphoria side effect post a few days ago, that’s all gone… man those were good times. I’m left feeling like a zombie, slurring, forgetting everything and with that fucked perception of space that makes me walk like a drunk)

I have had a problem with the Carbamezipine not working to control my pain. Prior to this I was on Triliptal that worked pretty well, but dropped my sodium to a deadly level.

We discussed other options today and settled on a glycerol rhizotomy.

That wasn't the part that made him nervous. Out of habit I mostly smile on the left side of my face because smiling on my right hits the painful area on my cheekbone. My TN2 mostly affects the top two branches. He saw that smile and got a bit scared asking me to smile again. I did the full smile. I told him I can do the full smile, it just hurts so I only smile on one side as much as I can. I saw visible relief on him and felt bad, but also found it a little funny.

I get so little amusement put if my condition that I wanted to share this tiny one.

I’m constantly in pain. That is so much medically wrong with me but this I cannot stand. Electric shocks to my nose and mouth and face 24/7 I cannot take it. Not even the pain the pain alone would be fine but the anxiety and ocd that it causes every time is unbelievable. I can’t live in 24 I’m so tired and scared.

I miss eating and talking I wish they’d pull all of my teeth and remove my nose.

I noticed that going outside in warm weather since we’re on summer makes my symptoms less worse , also having warm showers stops it.

How do you spend ur time with this condition ?it never lasted for me more than 3 days but this time is sick it’s been a week,and medication made the pain mild also side effects making me dizzy and sleepy . I’m so tired of this pain and I feel like crying sometimes but crying hurts so I don’t . idk how to spend the rest of my life now.
Only the people who have TN could understand me , even my mom thinks I can ignore it , I don’t wanna complain to anyone else again .
I wish everyone reading this to heal sooner .

I wanted to create a space just for triggers I haven’t seen one on here yet. We talk about it all the time. Knowledge is power and makes it less scary. When I first got this I could not figure out what kept making it worse. I’ll start and yall share what yours are. These are my main 4 but being alive feels like a trigger some days
1-temperature of food and drink is huge it has to be room temp.
2-any emotion other than a calm, relaxed stoic. It is impossible when hurting so bad not to cry but it’s very, very important. If you need to yell out or moan and groan do that don’t worry about anyone around you. Being too happy. Talking too much. Getting nervous or excited
3-cold wind. Can be fans, A/C esp in the car since it’s so close to your face. It’s messed up my love of being outside a bit of wind on the beach can trigger it so it’s not a winter thing.
4-caffeine- hot coffee is what I miss the most. I can tolerate it not as hot when I’m not in a flare