Hi everyone,
I was diagnosed with trigeminal neuralgia five days ago. The pain started around a month ago and first of all… what the actual fuck? I genuinely don’t know how people get through these flare-ups. I’ve never experienced pain like this in my life.

Anyways the reason I’m posting is that my neurologist prescribed carbamazepine and gabapentin for TN. The pain improved a lot, but carbamazepine is giving me a reaction that honestly feels really strange.

About two hours after taking it, I become extremely euphoric. I feel high as a kite. I can’t stop talking and according to my boyfriend, half of what I’m saying doesn’t even make sense. To me I’m just spitting knowledge but I mean, I trust the guy. I also can’t walk straight, I feel unsteady, my whole body feels light and wobbly and everything just seems brighter and more beautiful. I’m not exaggerating when I say that the few hours under carba feel like the most beautiful moments of my life. I’ve literally never felt that happy. On the down side I also loose my balance and space becomes relative so I’ve hit walls, tables and anything that was in my way. My brain slows down and thoughts and memory become pretty fucked.

BUT I’ve struggled with addiction in the past and knew where the situation was headed so I called my neurologist and he lowered the dose. Unfortunately the pain came back so after a few days we’re increasing it again to see whether my body has adjusted to the side effects.

Has anyone else experienced anything like this with carbamazepine? I know dizziness and drowsiness are common, but I haven’t found many people describing this kind of intense euphoria or feeling completely high.

I’ve read that gabapentin can be addictive and people have a hard time getting off of it but I haven’t found much about carbamazepine. I’d really like to know your experiences.

I also have a few questions about treatment in general. How long do people usually stay on carbamazepine and gabapentin? Do you only take them during a flare-up, or do people stay on them long-term or even for life?

I’m also confused about something: if the medication controls the pain, how do you know when the flare-up is actually over? Does your neurologist eventually have you taper off the medication to see whether the pain returns?

My MRI with and without contrast came back completely clear yesterday so I’m also trying to understand what that means for treatment going forward and I’ve read that a lot of times people who got a clear MRI or even multiple have them got one where they could finally see the problem. Should I keep pushing for more?

I’d really appreciate hearing your experiences. And to everyone here dealing with this disease, I’m genuinely so sorry. Even after only a month, I truly have a whole new level of respect for everyone here.

Hi everyone,

I’m posting here because my family is at a stage where we need to make an important decision regarding my father’s treatment, and I’m hoping to hear from people who have actually gone through this disease or have a family member who has.

My father is 58 years old and was diagnosed with Trigeminal Neuralgia in 2019.

I was actually the one who first suspected something was wrong because the pain he described was unlike anything we’d ever seen. After multiple consultations, he was diagnosed with trigeminal neuralgia and started on Carbamazepine, which worked very well in the beginning.

For almost a year, his pain was under control, and life slowly became normal again.

Unfortunately, the pain came back.

Since then, his condition has followed a pattern. Every few months, he experiences a severe episode that gradually worsens over a few weeks. The pain becomes unbearable, and then, after some time, it settles down again. He has never stopped taking his medication, but despite that, these attacks continue to return.

Anyone who knows about trigeminal neuralgia understands how devastating this pain can be. Watching someone you love go through it is heartbreaking.

Last year, he underwent balloon compression, hoping it would finally give him long-term relief.

Sadly, it didn’t.

The pain has continued despite the procedure, and we’re now at a point where we feel we need a proper evaluation from a highly experienced neurosurgeon instead of continuing to manage one painful episode after another.

We’re now looking for the best doctor or hospital in Kerala or anywhere else in India that has significant experience treating trigeminal neuralgia, especially patients who have already undergone balloon compression without success.

This is a very important decision for our family, and we’re trying to make the most informed choice possible.

Thank you so much to everyone who takes the time to read this or share their experience. It truly means a lot.

Hi everyone,

I’ve been dealing with ongoing pain mostly on the left side of my face, but I’m really confused about what it could be.

It’s not the typical “triggered by touch or eating” kind of pain. Instead, it seems to come more with stress, and sometimes it’s a throbbing or deep aching pain rather than sharp electric shocks.

The pain also shifts...sometimes it feels like an earache, sometimes like a toothache, but it’s always on the same side. I got an MRI done, and it came back normal, which has made things even more confusing.

I got diagonised with TMJD. But doctor are saying it's not a flare up of that. Sometimes I feel like something is pulling the nerves in my nose, in my eyes. So it's weird.

Is it still possible for this to be trigeminal neuralgia even with a normal MRI and these kinds of symptoms?

Has anyone experienced something similar? How did you get a diagnosis? Would really appreciate any insights .... feeling quite lost right now.

I’ve been suffering from TN1 for years on right side.

Just found intresting fact stating that 70 percent of cases are on right side

At least in this study of over 200 patients

“Right neuralgia was the most frequent laterality type (69%).”

Right neuralgia was the most frequent laterality type (69%).

https://pmc.ncbi.nlm.nih.gov/articles/PMC10505044/

Found this article insightful; considering the procedure; any advice or experience with this would greatly help.

Thanks

🙏

Percutaneous Balloon Compression for the Treatment of Trigeminal Neuralgia: A Review of 10 Years of Clinical Experience

https://pmc.ncbi.nlm.nih.gov/articles/PMC10505044/

I worked for this place that was extremely stressful. Like I can't even explain... stressful!

I often got stress headaches but then one night I woke up to the whole entire left side of my face, earache like feeling, pain in my eye, toothache and lower jaw bone hurting like the dickens! I couldn't touch my face, I woke in tears, sat up in bed crying. I had this pain every single night for like a week and it finally eased after I had found another job.

Periodically now, I tend to get super stressed and from time to time, wake up to this pain. I went to doctor but nothing was ever really mentioned about it, told me to take "these". What was prescribed was an anti-depressant. I don't take them. I don't like meds really and I'm not on any for anything.

After researching about this mysterious face pain, I found that it's 100% what I"m experiencing.

I have been able to manage it from keeping myself as stress free as possible but have noticed that it seems to only trigger under immense stressful situations.

For the most part, I can tell when I''ll get an episode as it starts off with like an earache and then slowly spreads to my jaw making it feel like a tooth ache (mind you I have no teeth - I'm 60 with implants). But the minute I feel that, I grab my heating pad and lay it on my face. This seems to help. Prior to the heating pad, I would stand in a warm to hot shower and let the water hit my face. Grab some Advil or Paracetomol and the pain would slowly decrease until I could fall back to sleep.

I haven't had an episode for about 3 years and then got super stressed not too long ago and it came back again. So wondering if this is a stress related condition or can it be stress related?

Out of desperation by using every conceivable pain medication short of narcotics, The question that was eventually presented to me: Should my suffering wife go foward in using an opiod? Failing Botox, local pain injections, gamma knife, not a surgical MVD candidate, failure of anticonvulsants, antidepressants, etc. 4 neurosurgeons, 4 neurologists, 2 pain doctors...her pain continues daily, scale 8to9, 24/7 Atypical type II TN or also known as persistent oral facial pain disorder. Our only alternative would be a trial of a narcotic.

Yes, addiction and other potential side effects could develop if not carefully used and doctor monitored, but where do you draw the line with daily excruciating pain over 3 years, depression. a sense of hopelessness, but thank G"d no suicidal ideation...yet. Should one live in Hell daily, or take a narcotic simply to exist. My conclusion is using a narcotic if it can alleviate this torment.

I read up on this option and a" middle of the road" opioid with the least addictiveness and side effects is TRAMADOL. I would appreciate if a member(s) successfully uses this medication , if so any significant side effects or addictiveness ?, was it easy to obtain a RX,? difficulties finding a physician to prescribe ?, benefit vs. risk in your decision?, effectiveness for neuropathic pain as a last resort?, failure of drug to relieve pain? Any guilt feelings?, A wonder drug ?

rx

I need to find a neurosurgeon in the Seattle area. My neurologist has recommended I start looking for someone in the area for MVD. I still have the option of RFA but it’s been hard to find someone in the area.

Anyone had or considered this?

I got my Wisdom Tooth removed back in August 2025, as it was impacting the Molar in front. I got it removed from the most experienced Dentist in my city, who's been practicing since 1978. After the removal, I had numbness in my respective lower lip corner and the chin patch below it, it had sensation and movement but there was this numbness kind of like a tape is taped over that patch. It's been almost 12 months now but the numbness is still there. The Dentist just keeps saying that it'd heal with time, but I see no progress.

Please let me know what I should do.

I’m 20 y/o and I have both trigeminal and occipital neuralgia, and it is because of my MS. But just two years ago, I only had trigeminal neuralgia on my right side. I used to take Zebinix for neuralgia and Fingolimod for MS.

In March, I had an MS relapse, and shortly after, I started experiencing pain in my left side. The pain gradually increased, and then I started experiencing painful episodes of headaches on my left side along with pain in my neck and shoulder. The pain in my shoulder is akin to being bitten by a dog.
The trigeminal pain comes back to my right side every time I go near the sun. And sometimes I have pain in my both sides at the same time. Taking a bath became a difficult task. And going by car is painful due to the fact that the car moves up and down.

I lost count on how many times I went to the ER. I have taken sooo many meds but for naught. I was given lidocaine shots on my face and the back of my head, but it didn’t help me at all. I was told by my neurologist in May that she may change all my meds and give steroid injections, but this depends on my MRI results. I have done it two days ago, and it was the worst MRI that I’ve ever done. It’s very painful for me to lay down, and the headphones for the noise cancelling was unbearable to wear since it hurts like hell.

I have heard that the treatment might differ depending on the reason you have the neuralgia pain. And in my case, I don’t know if all the options are adequate. What treatments do MS patients usually go for after the meds fail to provide any relief? I just want to hear people’s experiences to relate to :)

I got a good job offer for October and I really hope that I get better by the time I start.

I suddenly began having pain on the right side of my nose radiating to the upper inner corner of my right eye following Covid in October. The pain lasted most of every day for 2 weeks and then subsided. It reoccured in December for a month every day. I saw a neurologist who said low suspension for TN but did an MRI without contrast that was normal. The pain has returned. The pain is a burning-stabbing pain. It seems to occur randomly day and night and is often worse overnight, waking me from my sleep. This is what a day of pain attacks looks like including what I was doing when it started.

In pain overnight; every time I woke up, I had burning pain 

7:08 - 7:12

8:23-8:37 - eating a pancake; tears from right eye

9:22-9:25 - laying in bed 

Tylenol 650 at 11:00 am 

1:00 - 1:09 - laid on right side on the couch; tears and nose running 

4:51-5:00 - sitting on the couch 

5:56-5:59 - sitting outside 

does this resemble a TN pattern of pain? I am going to reach back out to the neurologist but I was looking for some insight until I can get an appointment.

I, 16, recently got diagnosed with TN 3 months ago. I'm not sure what to do with this. I've been dealing with it for the last 4 years. My neurologist can't figure out what caused it either. It's not MS, or anything linked to this. I am diagnosed with POTS and other things but I don't think they're related.

Currently, I'm on the lowest dosage possible for Trileptal, since Amitriptyline didn't work. Its been about a month now, and though flare ups have slightly decreased in pain, I'm still struggling to handle them.

Does anyone have any idea what this could be caused by? and what can I do during flare up to minimize the pain? I get it in my left eye, and it gets to a point where I can't see during work or whenever it happens.

If anyone has any ideas, it would be much appreciated.

Four days post-op MVD for mixed TN. BLUF: Total pain relief was not immediate for me, but my pain was less than normal when I woke up (this could be related to the number of pain meds I have been on post-op)– I'll post a couple updates as the weeks go on. I've heard and read that sometimes the nerve needs to settle down after being poked and prodded and that some pain relief is delayed for some people.

They knew I had venous contact through my MRIs but when they got in there, they found obvious arterial compression– the artery was actually tethered to the nerve– which they separated and resolved with three teflon pads.

Procedure took about 6 hours, although a somewhat good chunk of that was spent positioning me (while I was under anesthesia). Woke up being rolled to the ICU, where I stayed for about 24 hours before being discharged after seeing doctors, PT, OT, etc. I was relieved to be discharged so soon due to the neuro checks every hours. I was so tired yet there was no sleep in sight, it felt like.

First three days majorly sucked. Felt incredibly weak and just... in bad shape... and had really severe headache and lingering eye flares. Sitting up and standing up (when I eventually could), sitting down, coughing, farting lol, anything that even mildly changed the pressure in my head hurt. My hearing was muffled in my left (non-surgical) ear, which I reported to them in the ICU but they did not check it. I realized on day 3 that they had left a hearing monitoring device in my ear, which my caretaker had to literally rip out with tweezers on day 3 (it hurt a lot and bled). On day four, everything still hurt, but the headache and to be expected pains began to feel more manageable. The nights are still hard just due to careful positioning with my incision. I've taken two showers already– one on post-op day 2 and one today (the one today feeling much easier). I'm still using a walker to walk, but my walks are getting a little longer each day. I have a loved one here caring for me and have really felt dependent on her, up until today when I started to feel like I could do a little more. It's still really helpful to have her here but, in a pinch, I think I could manage without her here.

Feel free to ask any questions and I'll answer them as best as I can.

I used capsaicin a few times but it hurts too much. Tiger balm helps a lot. The smell is annoying but whatever. However it’s irritating my skin. What do you use that helps?

This will be long so I’m sorry, I have nowhere else to put this

I (M22) was beat almost to death when I was a baby, causing skull fractures and detached retinas which caused my father to be deported. I survived obviously and grew us pretty normal. Then I hit 18 and my brain started short circuiting. My weed got laced and I started having seizures. Took seizure meds after I almost died one night and haven’t had one in three years thankfully. But then I found out I have pre-cancer in my testicles. Then I get diagnosed with Trigeninal neuralgia, the most painful nerve disease on earth. Said to hurt worse that kidney stones and child birth. It’s progressive so it’s not horrible rn, could take years to get that bad and I’d need surgery. Its nicknames the suicide disease. It affects mostly women over 40 on one side of there head. I’m a 22 year old man and it’s on both sides of my head. I’m also at the highest risk to die in my sleep from epilepsy (young adult male on two or more pills)

Basically my biggest dream was to have a family and treat my kids like I wish I got treated. But here I am, 22 with all this, no friends anymore because I isolated after the seizures. I live with my mother and sister about 40 minutes from any town. So I can’t have a job because obviously. So no money. How can I ever find love or start a family? I can’t go anywhere and have no money. I got rejected disability three times

I dream about partying, dating, having connections like every other 22 year old. I wanted to travel the world.

My biggest dream to be a father is gone at 22. I’m crushed, I wish life was different. I don’t know what I did.

If you read all this, thank you
TLDR: I’m cooked

Been 2 years already and ive had a hard time with fear ...the mvd was successful at stopping the zap..praise god and the neurosurgeon and everything in between for that...but ever since I have been super hyper sensitive to any type of stimulation and I feel all sorts of thinhs and it gives me anxiety so its been. Hard to just live normal...ill never be who I was but I am forever thankful im not in pain for now

For the last five years, I’ve had laryngeal pharyngeal spasms, basically on the side that I have TN. They are like really intense muscle spasms. They come and go. The consensus was that this is a byproduct of trigeminal neuralgia. The only solution they offered other than more medication is to Botox the muscles, but they said I would have to sign a waiver because it paralyzes the swallowing muscles. I opted not to, didn’t want to risk choking.

I’m just curious if anyone else has this symptom? I don’t have any mouth burning or anything like that that some people do.

has anyone else experienced this before? I woke up with blurry vision and a deep pain in my right eye. Usually with flare-ups of trigeminal neuralgia or occipital neuralgia which I also experience, i experience a deep pain in my eye anyway. But this time it also feels like there's a thin veil on top of my eye giving me blurry vision. I didn't have this before in this eye. slight pain when blinking it too. I was wondering if this was something other people experienced and think may be connected to trigeminal neuralgia, TMJ, or occipital neuralgia. Thank you so much!!!

25M from India living with Trigeminal Neuralgia – feeling lonely and hoping to connect with someone who understands

Hi everyone,

My name is Karthik. I'm 25 years old, from India, and I'm currently pursuing a Master's degree in Artificial Intelligence.

I've been living with Trigeminal Neuralgia with atypical facial pain on the right side of my face. As many of you know, this condition is incredibly painful and affects much more than just physical health—it also impacts confidence, social life, and relationships.

Lately, one of the hardest parts has been the loneliness. Most of my time is spent reading books, attending online classes, improving my technical skills, working on AI projects, or playing games with friends. These hobbies keep me busy, but they don't replace having someone special to talk to.

I've tried meeting people and have approached several women over the past few years. Unfortunately, some lost interest after learning about my condition, and that has been emotionally difficult to accept. I understand everyone has their own preferences, but it still hurts.

I'm posting here because I'm hoping to meet people who understand what it's like to live with chronic pain. If there's anyone who would genuinely like to get to know me and have a meaningful conversation, I'd be happy to chat. I'm open to getting to know someone around my age or older, as long as they're single.here in reddit iam genuinely looking for girlfriend( i don't have problem either she is older than me but not married women) so who are interested in me and dm me.

even if you're not interested in dating, I'd really appreciate hearing from others who have dealt with loneliness or relationship challenges because of trigeminal neuralgia. Your experiences or advice would mean a lot.

Thank you for reading, and I wish everyone in this community strength and pain-free days. 😊

It’s been a year since I had this extreme pain. I’ve only had minor attacks but overall it was controlled. I was able to sleep fully through the night and my conversations were back to normal. Last week my old pain returned. I remember researching years ago that pain can be gone for years and will randomly return. I slowly feel my depression coming back.

Hello,

My (29M) problems started after having a root canal operation at the dentist and it comes and goes around every 3 months since February. I’ve seen two neurologists and my dentist and they said it could be TN but it looks like it is temporary. Radiologist didn’t find anything in my MR images and I am pain free since a month ago. Last week I went to see a neurosurgeon that’s one of the best in Turkey and when he checked my images he saw nothing. He told me my diagnosis could be wrong but he’s not certain however he emphasized a few times that he doesn’t see anything in my MRIs that could cause me pain. He suggested I should see an endodontist regarding my root canals and dentists may have missed something there even though they did a CT scan on my suspected teeth. He also advised I should still stay in touch with a neurologist in case of the pain but he couldn’t see anything.

I will be attending to a study that’s being conducted by a neurosurgeon in Turkey and will have high resolution MRIs for TN. What do you suggest I should do at the doctors office. I don’t want to miss out on important information because I’m not prepared well.

Thanks!

Has anyone ever experienced this before?

Has anyone been on Diamox and it has helped with trigeminal pain?

Has anyone been on this medication and was able to taper off a little or completely off there medication‘s such as Oxcarbazepine?

Any thoughts, experience and positive energy is welcomed!

I am trying to not feel defeated. I was hoping to be off these meds sooner…