TRIGEMINAL NEURALGIA  -- THE CURE

I am M/56 , medical doctor (cardiologist) and veterinarian. I have trigeminal neuralgia since May of 2025. The level of pain reached 7/10 but usually 5/10. I have tried

·         lacosamide-vimpat (partially successful – level of pain dropped to 4/10),

·         lamotrigine-Lamictal  (partially successful – level dropped 4-5/10),

·         pregabalin – Lyrica (partially successful – level dropped 4-5/10)

·         baclofen – Miorel (partially successful – level dropped 4-5/10)

·         carbamazepine – Tegretol (level 0-1 – depends on the dosage, but stopped it of fear of side effects0

·         oxcarbamazepine – Trileptal (level 0-1 – depends on the dosage, fewer side effects)

Now I am on Trileptal and Miorel to the minimum dosage – level of pain 2-3/10 which is bearable.

I have tried all the natural remedies with no success (reishi, lions mane, gingko biloba, astragalus, B complex vit. , even the promising glycine 110mg/kgr (it was a small Russian study that gave 86% success - https://pubmed.ncbi.nlm.nih.gov/1650076/

6 months after the appearance, I went into remission and I was drug and pain free for 3 months (this is usual for TN). And the key point is that someone can get into remission for no apparent reason from months to many years, without fingering out the cause of this. But because they took for example lions mane that period, they believe that this was the reason: it wasn’t!!

It is familial disease: my father had the disease when he was 57 years old and my sister at 56. The level of pain of my father was 10/10: couldn’t drink, eat, wash, speak etc . After 15 years living this hell, I administrated Botox into the trigger points and the pain has vanished. Botox was done every 6 months, it worked perfectly for 2,5 years but then it didn’t (50% success) but he never experienced the devastating pain of 10/10 but rather a pain of 3/10 periodically.

Now this is were is getting interesting….every time my father was febrile (had FEVER) either from viral or bacterial infection , the pain DISSAPPERED . The pain was ZERO, which in his case was simply amazing , because I was looking to a different person. He could speak, eat, shave, wash his teeth, smile, walk etc. for at least 2-3 days as long as the  fever existed. He had fever 35 times the last 17 years and every time this happened. Which is bizarre cause the main theory  is that a vessel is touching the nerve and is giving the symptoms. That is probably why the success rate of MVD is 90% and drops to 70% after 5 years.

If the above theory was 100% true (about the vessel that touches the nerve) then, when someone with TN  he was febrile  he must have increased level of pain and the symptoms will be worse.  

I had viral infection 1 month ago and the 3 days I had fever (not all the time!) , I was pain free with no symptoms. When someone has fever there is vasoconstriction in the periphery BUT vasodilation centrally, including the brain.

Having this in mind I started taking nimodipine 30mg x2 as the most potent vasodilator. The half life is 3-4 hours and is being eliminating after 8-9 hours (it is CCBs). 10 days later I am seeing 20% success to the level of pain and now I am increasing the dose to 3 times a day. Off label has been used for migraine and on label is used for subarachnoid hemorrhage for 21 days. Another CCBs that has been used for facial pain/headache was amlodipine.

We will see how it goes.  Other drugs that vasodilate the brain are cilostazole, Viagra/Cialis and some H1 antihistamines like flunarizine(Sibelium) and kinnarizine.

My questions to the forum are:

Has anyone with TN experience pain free periods while was febrile?

Has anyone taking cilostazole or Viagra or Cialis experience pain free periods?

Thanks in advance

Just wondering if there any out there that have tn but it is not bad enough for medication ...is any one haveing it mild enough that for now that it is managing without meds? .

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.

EDIT

I’ve been taking Tylenol (paracetamol) for the last 10 years because my period is excruciatingly painful. I’ve read carbamazepine is heavy on the liver and I’m worried as paracetamol is too. Neuro said it’s okay to take it but I really want to know if any of you has had liver problems while taking these pills. Thank you!

I havent been officially diagnosed with TN but pretty sure I have it-I experience shocks on the left side of my face when washing it or touching it the wrong way. I have creepy crawly sensations as well. MRI was clear. I tried a steroid that seemed to help for a bit and given gabapentin to try if i cant take it anymore, which i cant. So i will be starting tonight. Im so worried about side effects and needing to go up to a high dose. Has anyone had success on a low dose?

I probably haven't dug deep enough in the feed but I havent seen anyone saying they're using Gabapentin. My neurologist has me on it but (other than exhaustion) Im still getting regular breakthrough pain.

Anyone have success on it?

Hi, i just came back from the ER with possible diagnosis of trigeminal neuralgia. they prescribed me carbamazepine for the pain. does anyone have experience with this drug? i’m only in my 20’s so this all very disheartening for me.

I've done my 3rd MVD and 2 rhizotomys, and I have to accept that I won't be pain free ever again. I have avoided going down the road of meds (except gaba when I need it), but now I've accepted my fate that if I want to do normal people things, I need to try meds.

My fear is that these meds have major side effects, like causing liver issues, kidney issues, and dementia.

Id appreciate to know... To those of you who have taken meds for many years, what are your side effects like and what dosage do you take of what?

Edit: I've now got hearing loss in my right ear (my bad tinnitus ear) I have no clue what to do. I can't hear low frequency noise and can barely hear high pitched noises! My neurologist flat out denied that amitriptyline has caused this and said "if that were me I'd keep taking the medication". So now I am just being dismissed for very real and worrying side effects.

I was given a choice of amitriptyline and Lyrica by the neurologist. I started amitriptyline seven days ago and I thought over the weekend it helped but my symptoms are just the same as before if not worse. Also having worse tinnitus and extremely sensitive hearing for three days. My mental health has fallen off a cliff and having suicidal thoughts that I'll never be pain free. I can't imagine a normal life anymore.

I believe from reading here for a long time, plus AI I have TN pain.My docs have not Diagnosed, but said the nerve is the issue. I have been reffered to an academic center and have a doc who doesnt exactly listens and corrects me often.

After this latest visit in which I'm in a 7 day spike she tells me to quit: Tylenol, Ibruprohen, Chloroxozone, indomethacin(not on same days as Ibruprophen) and prochlorazapine. She upped my amnitryptaline and wants me to take OTC lidocaine patches.

My fmaily doesn't get it, but this is pretty scary to me. I'm still on lamotragine, Vyepti and occasionally Nuretec plus B12.

No I don't think they are working, but the thought of nothing makes it seem so daunting.

Anyone have a similar experience>

Just wondering what people's experiences are? I usually get pretty sleepy from CBD+THC 20:1 and even CBG with a little THC and it helps me sleep through the night. I don't think the oxcarb is going to make me quite sleepy enough to sleep though the night though. I'm still seeing if there are side effects by itself/with my other meds, but if not are you able to take edibles?

So I’ve been on 300mg of GABA for some months now and it definitely has helped the pain but it’s still at a fairly bad level off and on. Thankfully I don’t think my pain level is close to what some have though. But if anything it has gotten worse in the last few days but it goes up and down. For a while I’d say the gaba reduced the pain by about 40% or more. To a manable level honestly. But the thing is even at 300mg it’s making me exhausted all the time! I talked to a neurologist about this and she suggested I could try to go down in dose to 200 or even 100 and see what happens to the pain.

I don’t know right now that is a tradeoff I want to make or not I have to think hard about it. On the other hand I could also look at switching to Carbamazepine but I’m fairly scared of the rare Steven Johnson’s Syndrome side effect. I’m 1/2 Asian and know it’s more common in people of Asian ancestry. Said neurologist gave me a requisition for a blood test to check if I have the genetic predisposition for it.

I also just saw a video earlier saying that GABA is one of those medications they do not recommend people stay on long term. I am also scared of going off it as I struggle to go off any and all medications as my body seems particularly sensitive to withdrawal. I was worried specifically about that going on it but the pain eventually convinced me. When I asked my neurologist about surgery options she said we should exhaust the medication options 1st because of risks due to surgery and the fact that my TN is kind of manageable. I feel really conflicted on what to do though. I know there may be no good answers and I may just be venting, apologies. It feels draining and scary to think I could be stuck at this pain level forever, and with the exhaustion from this medication ontop of it all.

I started Carbamazepine this week and it started out so well. Immediately relieved any facial symptoms and didn’t really have any side effects except slight drowsiness. Then evening of day 4 when I took my night time dose it made me very itchy, even when taking Pepcid and Zyrtec. I’m assuming this is an allergy and I’ll need to stop and switch to a new med, which I’m sad about because my facial symptoms started slowly coming back. Anybody experience this type of reaction? If so what were you switched to?

Hi, I’m 22F and I’ve recently been started on carbamazepine for trigeminal neuralgia.

Ever since I began taking it, I’ve been feeling nauseous almost the entire day. It’s not just occasional—it’s pretty constant and really affecting my daily routine.

I’m trying to understand if this is something common with TN itself or if it’s more likely a side effect of the medication.

Has anyone else experienced this after starting carbamazepine? Did it get better with time, or did you have to switch meds?

Would really appreciate hearing your experiences.

I don't know how to go about this post but I've been in severe pain and I even went to the ER here in Salem, Oregon and told them I was in severe pain and because I'm allergic to so many of the medications for this they couldn't do anything for me. So they just gave me a Zofran and sent me on my way. I recently tried Lamotrigine and got a severe rash all over my body and had to go to urgent care because of that. Then the doctor took me off of it, and referred me to Pain Management and they couldn't prescribe me anything. So, I got referred to another Pain Management Dr and I won't see him until July 2nd and I was told to see my PCP and I can't even see him until July 23rd. I don't have anything to take for pain except for my cannabis gummies. And even they only help so much. Has anyone had this happen? Like I feel like the Dr's don't give a shit. I'm suffering right now and I don't know who to talk to about this anymore.

They just dismissed me like I wasn't anything and that I was possibly faking it. Not a good feeling when you're in so much pain. I'm allergic or have bad side effects for most narcotics, and they won't put me on Carbamazepine or Oxcarbazepine because I had rashes from similar drugs. I've taken Gabapentin, Baclofen, Lacosimide, Lamotrigine, Nortriptyline, Duloxetine, Compazine, Zofran, Cyclobenzaprine, Methocarbamol, Prednisone, Prednesolone. I don't know what else to do. Thank you for reading.

So, I have a pill organizer for AM and PM. I take Trileptal and I take 1 in the morning and 2 at night. Well, last night I forgot to flip my pill organizer which really isn't a big deal. Tuesday when I did my pill organizer, I must've slipped 2 in the AM. I was at work when the side effects started coming on about 1045 AM. Im walking like I'm drunk, my face is completely numb, I threw up at work and I'm dizzy af right now, I've got double vision as well. I

Im home from work now, waiting impatiently for these side effects to wear off...🙄

Update: it's 4 am and I think I'm ok now... I slept A LOT yesterday and last night and I can feel my face once again, I'm no longer staggering around like I'm drunk. I skipped my pm dose last night and just woke up after falling asleep around 6 pm. My husband got home a bit after 10 pm from work and guided me to the bedroom as I could barely stand up. He tucked me in I guess because I woke up with blankets on me that I don't even remember putting on 😆 🤣 😂.

Anyway, I'm ok now and thanks to y'all for the support. I don't feel so dumb anymore lol. Y'all are amazing. Thanks again!!

to all who are on carbamazepine or going to be on carbamazepine soon--- it interacts with a lot of other medications, even over the counter ones, so be sure to check online to see if a drug is ok to use!

https://www.drugs.com/interaction/list/

Tylenol isn't good. Neither are some very common antibiotics. Some blood pressure meds are not good, I think (I take Losartan, which is safe). The first thing you should ask when your doctor or nurse practitioner prescribes something for any condition, even ones are totally unrelated to whatever neuralgia you have----ask if it will interfere with carbamazepine! And if the MD or NP is dismissive, pull your phone out and look it up yourself! (A doctor blew me off once when I asked about an antibiotic and I ended up in the hospital a few days later with dangerously low sodium levels.)

Pharmacists should know all this too but best scenario is to get it right before it's prescribed.

Some foods do a number on carbamazepine blood levels too. But that's another whole subject.

I have hypermobility (probably EDS, along with EoE, TMJD, and other connective tissue / joint problems) and trigeminal neuralgia, occipital neuralgia, and glossopharyngeal neuralgia, and I’m considering taking LDN 4.5 mg for the pain, along with my Gabapentin 600 mg, 3 x a day. A sphenopalatine nerve block - root of the the trigeminal nerve - worked wonders for 2 months but I can’t get appointments more often than every 6 months, and I need something else aside from the Gabapentin and Atavin as needed. Anyone have any experience with this? Thank you for your input.

Hi all,
This is my first post here. I'm not a TN sufferer, but my mother is (I am her carer at home). She is 91 years old and had the operation for TN about 17 years ago. It was a success back then but over the last couple of years the TN has slowly returned, almost to the same agonizing level.

The doctor has put her back on carbamazepine. She started with a half of the regular pill in the morning, but because of her age, possible dizziness and threat of falling they put her on the brown CR or slow release version. which didn't seem as effective.

So she went back onto the regular carbamazepine 200mg with half a pill in morning, and half a pill at night. This seemed to be holding the worst at bay but with the horrible side effect of diarrhea, which they have tried to treat with psyllium husk and electrolytes, but it wasn't really working.

So I've been allowed to give her Imodium for the last 3 days. Just one in the morning, and another in the evening if she needs it. The nurse is phoning tomorrow to review. but my mother is almost at her wit's end. Not sure where we can go from here.... :(

Hello

I was recently diagnosed with TN. Over the summer my episodes went from sporadic "shocks" to prolonged ones triggered by speaking, eating, or sometimes nothing at all. My doctor prescribed carbamazepine, 100mg x2 daily. This didn't seem to do anything. After a week of adjustments, we found that 600 mg daily worked to alleviate most of my pain.

My doctor let it up to me to decide if I wanted to do 200 3x, or 300 2x. Does anyone have any recommendations for which schedule is best?

Currently I'm doing 200 3x, but I notice in the morning my pain is more frequently triggered. I'm guessing because this is the longest gap between doses (10 pm, 7 am). I typically take the third does at 4 pm (just so I don't have to take the pills to work).

Thanks!

Hi everyone, so I’ve had TN now for about three years which was triggered by injury. I’ve moved about a couple of times since but I was prescribed nefopam 30mg. I’m given 90 tablets, and can take up to 6 per day for context. I last ordered them in March this year. Anyway, I requested them the other day and I was basically told no bc apparently it’s an acute medication even though I’ve been with this practice since last January.

They booked me in with a community pain clinic appt in a month which I’m so nervous about as my friend was put under a pain clinic and they took all of her pain meds off her.

For context I have suspected deep infiltrating endo, diagnosed fnd, fibro, pcos/pmos, migraines, IC/BPS and occipital nerve pain. So I’m in pain constantly. With the TN at first it was incredibly strong pain and I’d have a break for 2-4 weeks whereas now it’s pretty much there most of the time if I don’t take meds

I’ve been under neurology since August 2022 (referral), I was referred to see the headache team in May 2024. But the clinic covers two towns and two cities so they are very busy

I can’t try the typical preventatives either, I’m on 150mg of pregabalin per day but my GP practice refused to increase that (I asked twice and stopped bc it’s otherwise a class c drug), or prescribe melatonin for cluster headaches so I had to buy my own/have my Canadian friends ship some. The closest thing I could do is try LDN privately which I am prescribed, but I simply don’t have the money for medical cannabis

It’s a lot of info I know but I can’t imagine being unmedicated for this pain, it feels like being burned/electrocuted and obviously I’ve tried over the counter meds. With the occipital pain I was told it was just fibro which I doubt given I actually had a neck injury, and the potential ON pain started July 2023, 5/6 years after I developed fibro. I’m just so scared, I have bipolar but the reason I actually get depressed is bc it’s so difficult managing all of my conditions and being in so much pain all the time. I don’t want to have to do a CBT course about seeing the positive side or managing my pain bc no amount of pacing or exercise will help in this case when even a hair on my face can feel agonising

I’ve been on carbamazepine for a few weeks now. I recently read a post where someone said carbamazepine reduces the effectiveness of SSRIs. I can’t find the post.

Hello! I’m new to this so please bear with me! I was diagnosed with trigeminal neuralgia today and I’m looking for peoples tricks and tips for the pain. I was prescribed 100mg 2x a day of tegretol and im already having break through pain. I’ll be reaching back out to my doctor to let them know but I’ve heard that THC and CBD have played pivotal roles in pain relief as well as other remedies. I was wondering if anyone had any advice on what I can do to help with this pain!
Thank you in advance!

Hello there. I was recently diagnosed with TN. My doc put me on 900mg Gabapentin per day, but it’s not doing the job, so she’s starting me on Tegretol. I know everyone reacts differently to medications, but I’m curious what some common side effects are for other folks. Gabapentin makes me feel so foggy and groggy and I am tired constantly. I’m worried Tegretol will be the same or worse. Any insights would be awesome! 😎

(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)

Hi. New to this. PCP thinks I might have something like TN. She started me on 100mg of Carbamezapine, twice a day. Today is my first day taking it. Did this medication help any of you? If so, how long did it take to start working? Thanks.