Hello! I just found this group today and want to introduce myself. I am here on behalf of my husband. We are older and both retired. About eight years he wanted to get a snack from the refrigerator. He opened the door and jumped back in terrible pain, bringing his hands to his face. He said he just got a massive shock from the refrigerator. Naturally after that I, too, was afraid to touch the refrigerator, but did and never got shocked. He had had an attack of Bell's Palsy about 20 years ago when we lived in a cold climate, and was hoping he wouldn't ever get that again. Not sure if that has anything to do with anything.

A few years ago he told me he was getting 'shocked' on the right side of his face and could hardly stand it. I could see it was starting to work on him and bring him down. He said he was almost afraid to move. I did plenty of research and figured it could only be that thing called "trigeminal neuralgia." This was when we thought about the refrigerator and realized it wasn't that, it was this.

Took him to the doctor. Since I am better at describing things, I told her the story, that I had done the research and believed it to be TN. She was a real witch and seemed quite angry at me for "making a diagnosis when I'm not a doctor." Whoa! I guess we aren't allowed to try to find out things for ourselves anymore! She all but ignored me, and asked him a bunch of questions to which he answered yes or no. I had also read up on carbamazepine but didn't dare ask anything. She gave him a prescription for it - 300mg.

A few months later we went back and he asked to try the oxcarbamazepine. He did, and he hated the way it made him feel. So it was back to the doctor, and back to the 300mg carbamazepine. That did seem to control it. There was no way my husband wanted to go through any kind of surgery, especially if it had the word "knife" in it.

My husband really wasn't the same on the 300mg. I could barely hold a conversation with him. I'd ask him something and he would just sit there with a blank look. Inwardly, I was worried that he was getting something else utterly horrible and made him go back to the doctor. I hated the thought of explaining to her what was going on but forced myself to. Without much explanation she reduced it too 100mg which he is still on. Thankfully he is back to his coherent self and has his energy back. He hasn't has an attack for over a year.

During this adventure I've learned a few things. Number one is not to deal with nasty doctors -- they only increase the stress and that makes it worse. Doctors need to be trained in how to just be nice to people and not hate the ones who ask questions. Next, TN isn't necessarily caused by dental pain and may not be related. His was not related to ongoing dental work at the time. After going through a bunch of youtube videos I saw one saying to try massaging on the opposite side and showed him how to do that. He thinks that has really helped to hold down an attack.

I'm glad to have found this group and pour my heart out to all of you having to deal with this in any way.

Botox has been the only thing thats given me any relief. I’ve had 2 rounds, the first was in June and I got maybe 2 weeks of relief then it wore off. I had a 2nd in September and got about 30 days relief and can feel it wearing off and am terrified the pain is returning. Neurologist said to only do it every 90 days and I dread the waiting period until I can do more. For folks who have had success with Botox how long did it take for you to get long lasting relief? Did you have to increase the dosage to get it to last the full 90 days? My Drs approach is to gradually increase and I am at 50 units total and was told could go as high as 90-100 but wants to do it gradually. What have folks topped off at? Or is relief with this always going to be this fleeting?

Neurologist told me not to give up on it after only 1 treatment, and glad I did, but the rebound is horrible after getting relief even for a short time. I am type 2 due to facial trauma, mri confirmed no ‘traditional’ nerve compression, also wondering if I should push for a more substantial dose increase.

My dr can’t figure out what’s going on and is considering TN following a crown and Zyn usage. I get a prickling aching pain under my jaw especially when I talk and swallow and random burning nerve like pain in lines from my chin down to below my jaw. I just don’t even know what to think or if the placement is odd? Hoping to hear others’ experiences

Anyone have any personal experience of being on carbamazepine and methotrexate at the same time and feeling like the carbamazepine has lessened the effectiveness of their methotrexate? I take it for inflammatory arthritis and started carbamazepine around 6-7 months ago.

I haven’t got a diagnosis yet but it’s gotten very severe and either I’m in severe pain all over my forhead and head like burning nerve pain, or totally numb and it rapidly worsens daily. Seeing a nuero tomorrow. I was sent home from ER on two occasions saying I had to see a specialist they couldn’t help me, not even with the pain. Was a waste of time and so stressful 😣 it’s taken a long time to get neuro appointment and I had to really push for it so hopefully they can help. I wake up to more numbness each day. Also loss of interoception.

Does anyone take Carbamazapine just at night? Does it help with the dizziness during the day?

Hello,

I am 19 years old and live in Türkiye. In July of this year, I began experiencing a peculiar type of tooth pain. It would shift around—it wasn't localized to a single, specific tooth—and standard painkillers provided absolutely no relief. I consulted my dentist, who identified two rather deep cavities. They performed root canal treatments on these teeth and applied medication, but unfortunately, the pain persisted. It is a truly frightening and helpless situation; words fail to describe it. My teeth throb, and I feel completely powerless. Two weeks ago, a new symptom emerged: I sometimes experience pain in my forehead, and occasionally, I feel a sudden, intense, and unusual pain somewhere on my face that lasts for a few seconds. Interestingly, for about 3–4 weeks following my dental treatment two months ago, the pain seemed to disappear (or at least, that is what I believed). I should note that I do not experience sensations like electric shocks, numbness, or tingling. About eight months ago, I did have some unexplained facial itching—I suspect that may have been nerve-related.

When I last visited my dentist, I was told that I have no active dental issues.

I don’t know what to do. I’m feeling quite unwell; the pain is severe, and I feel as though there is no one who can help me.

Is there anyone who has that kind of experiences?

Stallate Ganglian Nerve Block.

I have had 2 treatments so far, and it has reduced my symptoms. Side effects included naturally increased serotonin, which affected my medications at the time, and I had to reduce some of my mental health drugs and go off others.

I was able to reduce my carbamazpine by 100mg, and that made a difference in my memory retention.

I have tried many different treatments and medications and this by far is the best one for me personally that I have found. It is worth doing your own research to see if it works for you but the studies done for treating those with Trigeminal Neuropathy through this type of nerve block are promising and I am personally happy with the effects so far.

I’m about a month into a bilateral diagnosis that my doctor said presented so weirdly he couldn’t believe it 🙃. He initially diagnosed me with tmjd/muscle pain and gave me trigger point injections which made everything hurt 100x more. I just failed oxcarbazepine. It helped my pain but 4 days into it my skin started burning. So now I am in a washout period while I wait for my bacoflen prescription.

I’ve been in pain for so long and had so much unnecessary dental work that I’m skeptical anything will work. Thanks for letting me complain.

My wife developed a pain behind her ear and down her neck/jaw mid afternoon. By 9 or 10pm the pain was much worse. By 1am she went to the ER. They diagnosed it as trigeminal neuralgia and sent her home by 430am and told her to use ibuprofen. Around 9am she developed a loss of taste and a numb feeling in half of her tongue. The dull pain continued throughout the day. It flared up again bad around 9 or 10pm. At 130am she woke up me thinking she was having a stroke because she couldn't move the left half of her face. Within about 45 minutes most of that had gone away but some has remained. Is this a normal side effect of trigeminal neuralgia? From everything I've read it seems to be type 2 being that she isn't experiencing any electric sensations. Just a pain (sometimes dull, sometimes excruciating).

Has anyone here been able to successfully identify the root cause of their disease? I was told I have some compression but Neurology can’t explain why I have it as I am on the younger side. Between 2019 and 2024, I was sick a lot, multiple covid bouts and so I can’t help to think that covid may have created or exacerbated the existing compression.

Hi everyone! This is really just a vent post because I’m scared to death. I have idiopathic trigeminal neuralgia (rt side of my face) that was officially diagnosed last September when I was 3 months postpartum from my second child. I had the electric shock/pains in both of my pregnancies (not often, 3-5 little episodes in both pregnancies) and assumed it was dental related but the pain always subsided and only lasted for short periods of time, around 3-4hrs. The pain at this point never went over a 5. I went to the dentist and OBGYN both pregnancies for this issue and was told this might just happen as a result of the pregnancies. Cool, whatever. Well last September on a random day, it started again except it was 0-100. I can say it was the most painful experience of my life and that still would not be the right words to describe the amount of pain I was in. I’ve since gotten control of the pain while taking tegretol 200mg TID and had been pain free since October 2025. Sept to Oct was unrelenting. The pain was every. Fucking. Day. I finally didn’t have anxiety over leaving the house with my kids or just being alone with them in general because of the flare or the pain.

Well a week ago, a piece of my wisdom tooth broke off. Full panic mode, I go to the dentist and schedule for the removal and of course it’s the right upper molar. I felt slight shocks this morning and immediately started my tegretol dose again as I literally just titrated off of it completely a month ago. I’m fucking terrified this is going to put me in a flare again. I get the tooth pulled Saturday and I cannot stop thinking about where I was mentally and physically this time last year. I couldn’t leave my house. I always had to have someone on standby incase the pain came when I was alone with my kids. I felt like a terrible mom. I knew I should’ve started the tegretol again as soon as the tooth broke but the side effects are so bad for me and I finally felt like a human again.

I’m just so scared. I need to vent to someone who actually has TN because my family doesn’t really understand my panic except for my husband and my MIL.

I (47m) haven’t had a TN attack in about three years (knock on wood). Recently, my face started tingling, which is aura for an attack for me. This lasted for about a week and a half. Fortunately the tingling went away without an attack, or I guess you can call this somewhat of a muted attack.

I haven’t taken any medication for TN in years, as my doctor encouraged me to wean off of them if I didn’t have any attacks. Since then, I’ve been diagnosed with narcolepsy. I take Xywav for my narcolepsy, which is highly negatively interactive with Oxcarbazepine, apparently.

My recent aura/muted attack has led me to on schedule an appointment with my neurologist. I don’t think the Oxcarbazepine will be an option for me, because Xywav is made my narcolepsy somewhat bearable and I can’t function otherwise. Any suggestions for some alternative treatment options that I can discuss with or ask my neurologist about. Has anyone faced a similar dilemma?

I’m horrified of having an attack now without any means to treat it.

Hello all. I'm recently diagnosed and I'm curious if anyone else has symptoms like these, and if it's related to TN or not.

Does anyone else feel like they have a constant sinus infection? I only have TN shocks on the left side, but I have pain and pressure that varies in severity in both ears, sinuses and back teeth. Also dealing with a runny nose and sore throat. I do deal with allergies year round but this is more than that. I also don't feel "sick" which makes me wonder if it's the TN.

When they were first ruling out TMJ, an X-Ray showed my sinuses were clear.

Hi all! This is my first post here; i’m 24F and have been having symptoms of TN after some major dental work for about 3 months now. I’m sure you all can attest to this, but these last 3 months have been AWFUL. My pain is on my right side and has been mainly characterized by constant, throbbing and aching pain in my teeth, ear, and a little bit of my neck, but I’ve recently started to feel those distinct “shocks” around my ear as well.

Anyway, I was lucky enough to get in for an MRI with contrast and with FIESTA today, so i’m wondering what you all’s experience with MRIs have been, particularly in terms of the wait times. I’ve read that normal MRI results can take up to two weeks, while results with more urgent issues will get back to you much quicker. How long did your MRI results take? And how were the results in terms of moving forward with treatment? Would love to hear more people’s experiences :) this subreddit is great and has really helped me cope with and understand this sudden change in my life!

I just got justice fir the nervedamadge (TN) that my dentist caused me when extracting my wisdom tooth wrongly and the leading infection, dismissal of pain and pain meds and accusations of being a drug abuser.

Today, after 2years of fighting with the insurance company and 4years of suffering I got my compensation. 146'000kr. (Sweden) (135'000 for the life long suffering and 10'000 for the pain during treatment)

I feel so fucking happy. I just hope that the damn dentist lost her job too. Fuck that woman to hell.

Finaly some justice.

Hi everyone,

I'm 30, from Scotland, and I've been suffering with severe pain on the right side of my face and head for around 19–20 months now.

I'm still waiting for a proper diagnosis. TN has been mentioned as a possibility, but I honestly feel like my neurologist isn't properly considering it, and I'm terrified it's going to be overlooked.

I've had scans come back normal previously, and I'm currently waiting on another MRI. I keep getting given leaflets about managing headaches, but I know what I'm experiencing is so much more than just a headache. It's incredibly frustrating feeling like I'm not getting anywhere, especially after suffering for this long.

My pain is pretty much constant. There's always some level of aching, pressure or discomfort around my right temple, eye, jaw and face. Sometimes it's burning or throbbing, and other times I get these absolutely horrendous stabbing, shooting, electric shock-like pains.

The individual shocks can last seconds or minutes, but during a bad flare they happen so frequently that it feels like one continuous attack lasting hours. Sometimes the pain is genuinely unbearable.

Things as simple as eating, talking, brushing my teeth, touching my face or being out in cold wind can trigger it. Even walking, bending over or doing anything physically demanding can make things worse.

My appetite has practically disappeared too. I often can't manage a full meal, and sometimes I'll take literally one bite of food and immediately feel sick. It's got to the point where eating feels like another struggle rather than something I enjoy.

I've also been dealing with dizziness, nausea, exhaustion and problems sleeping. I suspect some of the dizziness and nausea may be side effects of the medication I've been taking, rather than the condition itself, but it's difficult to know for certain.

I've tried several medications, including carbamazepine, oxcarbazepine, amitriptyline, candesartan and others. Carbamazepine helped slightly, but nothing has made a significant enough difference for me to get back to living normally.

The biggest problem now is how much this has taken over my life.

I'm constantly exhausted. I struggle to sleep properly, and even when I do get plenty of sleep, I wake up feeling like I've barely rested. Normal everyday activities have become difficult, and I feel like I can't make plans or enjoy things the way I used to because I never know how bad the pain is going to be.

It's also having a massive impact on my work. I have a physically demanding job, and between the pain, exhaustion and everything else, I'm struggling to manage. I'm genuinely worried about my employment and what happens financially if I can't continue working.

Mentally, I'm really struggling.

I feel like my entire life revolves around this now. From the moment I wake up until I go to bed, I'm either dealing with pain, recovering from a particularly bad episode or worrying about when the next one is coming.

And I think one of the hardest things is feeling like I'm

As I couldn't find any posts relevant to Dr. Mathew Mian at HCA HealthOne Swedish Medical Center in Englewood, Colorado. I want to give some info on our experience so other may have any info.

Our 1st appt to discuss if I was a candidate for any procedures for my trigeminal neuralgia was wonderful. It lasted about an hr where he answered questions and went over my old mri's. He paid attention, didn't look at his watch, discussed our options, and sent me to his website to watch a few videos and get a bit more info on the MVD. He told us if we make a decision to call and we can get put on the schedule.

We made the decision to move forward with the MVD and got put on the schedule for about 4wks later. Scheduler was great, sent us the MVD-What to Expect I attached. I called about follow-up questions we had and was able to speak to the MA and she was able to answer some and reassured me the cut is teeny tiny, no changes for sleeping is necessary and no need to elevate while sleeping. We went ahead and elevated the mattress to try and prevent swelling as we've seen with other posts. No additional appts with Mian before surgery.

Dr. Mian orders an MRI and labs for 5 days or so before the surgery and the hospital does a pre-op appt. Since we live 2hrs away they were able to get them back to back. They did MRI, then pre-op appt was patient/med history, ekg, and labs. Took about 2.5 hrs total with waits included. I had a few questions about the surgery and was hoping to ask a few at this appt. They informed me they didn't have any procedure specifics and to stop googling for answers.

Surgery day - was smooth, they are thorough about infections and hospital acquired bugs. You wash 3 days before surgery with a hebiclense soap neck to toes. Then apon arrival use body wash wipes to wash your body again. They clean the inside if your nostrils and take a swab to make sure no bugs. Make sure your not prego. OR nurse, anesthesia, and Dr. Mian pop in for a few min. Nursing staff was wonderful and anesthesia listened to previous anesthesia concerns and mitigated nausea and itching issues.

Post-Op in Stepdown Neuro ICU- nursing was great, they managed pain great, pain medication were managed great in hospital, zofran was put in swallowing zofran instead of dissolving for nausea and vomiting. I unfortunately threw it up. When asking the PA the next day for dissolving so I don't throw them up he informed me "All pills are dissolving". I'm assuming it was an unnecessary joke and not just a jerk response. My headache and nausea at the time took it as a very dumb response. Dr. Mian popped in for a couple minutes to clear me for discharge. I was scheduled for a 3 week Post-Op appt. Post-Op pain meds for home was Oxy IR 5mg every 4hrs as need and given #20, and zofran #15.

2wks Post-Op - and am having increasing morning headaches that are getting worse, blurred vision and depth perception with the headaches, ear drum pain and noises, and have a few questions on recovery. Was able to get a return call from MA and reassured this is normal and if they keep getting worse to let the PA know at my 3 wk appt or can call at end of this wk. I asked if I would be seeing Dr. Mian at the appt at all and was informed he is too busy with patients that still need surgery to do Post-Op appts. So his PA's handle all Post-Op appts and MA's handle all patient contact. I feel like the surgery is working, trigeminal pain is still there but is less extreme, but the daily pressure weird feeling in top jaw teeth is gone. So feel like that is a good sign.

I'm the type of person that prefers details to blindly going into something. Which is why I wrote this out. Sorry for the length. But if anyone searches for Dr. Mian they can get at least some info on what to expect. ​​I also included 3 pictures of incision and my experience with swelling. It seems like Dr's vary in types.

​​

dow anyone else have this condition before they will do surgery?

Has anyone else had this happen?

I had a horrible cold the kids brought home from school at the beginning of the school year. While my sinuses were full I had no pissed off nerves. Once my nose cleared up the nerves started up again. It even seemed worse, but that could just be because it stopped for a couple days and you forget how much it can hurt. I haven't seen this talked about, and was wondering if it's a thing or if I'm either crazy.

I mostly read here, if it's the wrong flair please let me know.

Today I had a really strange episode of facial pain that I’ve never experienced before. Curious if anyone has had anything similar. It started with a deep burning pain in one spot on my left eyebrow. Over the next several minutes it got worse, then I started feeling the same burning sensation in a separate spot just above my upper lip, near the center.

Both spots were still burning when I started getting this weird branching, almost line-like burning/tingling sensation down my left cheek like narrow strips beneath the skin. Eventually all three areas were burning at the same time.

The sensation was like a burning with pins and needles and sensitivity to touch. Possibly some numbness too, but it was hard to tell because the burning was pretty intense. The whole thing lasted at least 30 minutes, gradually faded on its own, and was completely gone within a few hours.

The weird part is I otherwise felt completely normal. It actually started while I was in the car, and I went on to play tennis while it was happening. No headache, vision changes, weakness, dizziness, or other noticeable symptoms.

I’ve had shingles before, and the burning felt somewhat similar, but there’s no rash or blisters.
Has anyone experienced anything similar, particularly something that came on suddenly and completely resolved the same day? What ended up causing it?

Hello everyone,
I’m looking for advice regarding my 81-year-old grandmother, who lives in Kosovo.
She suffers from extremely severe episodes of pain on the right side of her face. Sometimes the pain becomes so unbearable that she cannot eat, sleep, or carry out normal daily activities.
Her neurologist mentioned that the pain is related to a nerve, but we still don’t fully understand the exact cause or what can be done to help her.
She has undergone several brain MRI scans. Her reports mention cerebral atrophy, chronic ischemic changes, and an old occipital lobe infarction.
She also has diabetes and high blood pressure. Alzheimer’s disease and dementia have reportedly been ruled out, and she does not have significant memory problems.
According to her latest medical report, she was prescribed Tegretol (carbamazepine) and pregabalin for her symptoms.
We are concerned because her pain can be absolutely debilitating, and we would like to explore further treatment options or obtain a second medical opinion outside Kosovo.
**My questions are:**
Could these symptoms indicate trigeminal neuralgia or another type of facial nerve disorder?
What treatments are available when facial nerve pain is this severe?
Are there procedures or surgeries that could provide long-term relief?
Could any of her MRI findings be related to the facial pain?
Would a specialized MRI of the trigeminal nerve be helpful?
What type of specialist or medical center should we contact for a second opinion?
We just want to find a way to reduce her suffering and improve her quality of life.
Any advice or personal experiences would be greatly appreciated. Thank you.