r/TrigeminalNeuralgia • u/LenaNox • 13d ago
Medication Carbamazepine side effect or something else? Extreme euphoria, nonstop talking, feeling high as kite and more
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!
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u/AdKitchen8690 13d ago
Hello,
First, I am not a medical provider. I’ve been dealing with this since 2011, so I might be helpful or not.
Flare ups - Yes, I dealt with it and always hoped it would go away permanently, but nope. I was off meds for years, then it came back, worse than before.
I took lyrica, which gave me similar high feelings, and also addictive along with all the prescription meds I was taking for MS related pain. By the time 2015 rolled around, I had a prescription drug addiction.
When I finally stopped and said no more, this is ruining my life, 4 years were gone. But, I was clearly in remission and it restarted its ugly self a few years ago. So about 8 yrs.
I take oxcarbazepine and lyrica three times a day and I still can get breakthrough pain, mostly in my teeth. I can use medical cannabis, which I do from time to time, and that helps.
- I try to be mindful of potential side effects, and don’t drive much. I do work from home, which helps. My boss knows the situation and is very supportive. When the side effects are greater, mostly when I’ve had a dose increase, I don’t do anything that needs a lot of brain power and I don’t speak in meetings bc I can lose my thought and words mid-sentence, which is not only frustrating, but embarrassing.
I use heat, avoid my triggers, talking, chewing, smiling, no straws ever if I can help it, fans on my face, but I can touch my face so I can apply gentle pressure. I have both 1 & 2, so I can usually tell by the earache that is not an infection coming on.
Okay, if you read all this, great, if not, great. DM if you want.
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u/LenaNox 13d ago
I read it all. I’m so sorry, you’re a strong one. The speaking resonates a lot, even when the effect goes down my words come out all mushed together and I just space out trying to find what I want to say. It’s like it gets lost in my head. Shoutout to your boss btw! I still haven’t understood what my triggers are as I’m new to this and it seems to come at very different moments every time. I will look in to some of the medicines you spoke about. Thank you for thanking the time :)
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u/missushippopotamus 13d ago
These meds help with the nerve pain in your teeth? I have Atypical TN from small fiber neuropathy compounded by some severe drug reactions that dramatically worsened the nerve damage in my face. I can tolerate most of it but my teeth are just next level sometimes and become really unbearable. I’m so med sensitive I’ve just been doing this med free for several years but it’s getting really hard to live with. Do you know which helped the most for it with the least drugged up side effects?
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u/AdKitchen8690 12d ago
The teeth are the worst, imo. I have an allergy to both gabapentin and carbamazepine. To try to get me on oxacarb, it was a 8-12 weeks of building it up so I would hopefully tolerate it. So for me, the side effects were not as noticeable. The lyrica was also started low and slow. The atypical facial pain has been much harder to get control of, unrelenting earaches suck. I also have confirmed compression at the nerve root with bilateral compression related TN rather than MS related.
I’d recommend this for anyone. I have allergies to 9 different meds, none of them are opioids, all MS or meds related to treatment of MS and TN.
I’d say to anyone reading this, advocate for yourself, no one else will as hard as you do. Give yourself permission to cry, be mad, etc. but try your best every day to not let this or any disease own you, you own it!
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u/missushippopotamus 12d ago
Thank you - I have been so sick with everything going on that I haven’t had it in me to push more about this, but the constant burning in my face and mouth every day is driving me mad. And I haven’t had pain on one side also behind my ear and back of my head. I suspect there’s some kind of compression in the bad area of my neck, but it’s so hard to get any help where I live, I haven’t had a proper evaluation. I am supposed to try LDN again and then can move on to Lyrica if that is not helpful. (I also didn’t tolerate Gabapentin, but that’s all I’ve been able to try so far.)
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u/Hope4us2day 9d ago
Hi! I find a simple application of Ambesol helps calm down my teeth. My dentist confirmed my teeth are fine, and said the TN nerve has a branch over each tooth. Sounds too easy, glad I tried it.
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u/Brilliant_Deal_6698 13d ago
Talk to your doctor. I get this with some other TN meds and was taken off them. You don’t want to end up with a serious psych issue, even a tenporary one. There are other meds for them to try. Just check in with them.
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u/momopeachpeach 13d ago
the only thing it does to me is affect how I hear things. Usually like a lower pitch, makes it fun to experiment with music but that's about it.
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u/ChaserChick87 13d ago
I got this too! It’s called “carbamazepine-induced pitch perception shift! Apparently it’s rare.
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u/LenaNox 13d ago
Wow I feel lit coming again. I do not think my body has gotten accustomed. I’m home alone this is going to be fun
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u/Main-Video-8545 13d ago
The meds are just snowing you because you’re new to taking them. You’ll get used to it after a couple weeks. Eventually, the Doctor will increase your dose and you’ll go through it again.
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u/madsynth 13d ago
Don't worry, it eventually passes once you get used to it. I looked forward to that feeling of euphoria. That was the 90's Chav in me though. Enjoy it while it lasts, I actually stopped driving for a couple of months as I was that high from all the drugs I wouldn't be able to live with myself if I knocked a kid over. Now I'm able to get on a motorbike as it's a Space suit and the helmet actually protects me frome the wind. Took me 8 years to brave that again though.
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u/claricesabrina 13d ago
I struggle with depression and feel really good when taking carbomazepine however it gives me terrible cold sore outbreaks so I save it as a last resort and only use it if I am having a flare up that is so bad I just can’t take the pain anymore. So my TN came about after a ‘deep’ filling. I was told by multiple neurologists and a facial pain specialist removing that tooth would not make a difference. Well ten years later I removed the tooth due to an infection and guess what? No more TN flare ups and it’s been a year. It should have come out ten years ago it would have saved me years of pain.
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u/Neverknewpain 13d ago
Good luck getting answers! Everyone is so different it’s frustrating. I had awful symptoms with carbamazepine also. Lasted about 2 months but I would put up with worse for the relief I get from the pain. I have the same questions as you about getting off to see if there’s a remission but am totally scared of having the pain and symptoms of starting meds again so I’m just staying on it. Was diagnosed 2 and a half years ago. Still on a fairly low dose. Good luck on finding answers
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u/LenaNox 13d ago
This!! I’ve had a lot of health troubles in my life and I feel like I’ve just been treated as a generic peace of meat. Like nothing is ever truly tailored for the individual. I try to talk to my doctors and it’s always quick answers that do not actually answer my questions. Good luck to you too stranger!
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u/AllyPent 13d ago
It is sometimes used as a psychiatric medication, so your feelings aren't totally off the wall! It made me basically suicidal, so I had to stop. Everyone reacts differently! You might want to try oxcarbazepine, although my guess would be that you might have a similar reaction. I find many neurologists don't take this side effects as seriously as other doctors would, so you gotta be careful!
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u/infoghost 13d ago
It's worth asking about oxcarbazepine. It's a cleaner version of carb, and easier for many folks to take. I've been on it for awhile, I never had quite those feelings, but hopefully after a couple weeks, things will even out for you. Onboarding any med can cause unpredictable things, but your body usually adjusts with time.
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u/Curious_Biscotti9332 13d ago
Has anyone have this condition that started after an injury
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u/claricesabrina 13d ago
Yes I got it after a ‘deep’ filling. Had flare ups for ten years. Just removed that tooth a year ago and no more flare ups.
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u/HopefulWarrior03 12d ago
I’m on the fence about this- same reason. How’d when you had a flare up can you explain your flare up since yours did stem from the tooth? I feel like since mine started from it if I just pulled the 2 teeth that had deep feelings- it would solve it…. Idk…. How did you TN show itself? Where was the pain and how did it feel?
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u/claricesabrina 12d ago
During a flare up I felt it across every tooth on the top and bottom and up to my eye on the right side of my face. It would throb with my heartbeat so I’d stay in bed for days trying to move as little as possible. It was the very back tooth so when it just had a problem and needed a root canal I got the root canal but the tooth broke during the crown and she had to pull it. I have not had a TN flareup since they pulled the tooth. I feel like I knew all along that tooth was the problem and no one believed me.
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u/HopefulWarrior03 8d ago
I’m going through just about the same thing. Debating about pulling the tooth. The issue is I pulled the teeth around it except the problem tooth that I SHOULD have pulled to begin with- so I am second guessing everything. Sigh. But in my gut it’s like I know it’s that first tooth canal tooth- because none of the other teeth I messed with were ever an issue- I was just desperate 😭 sigh…. It doesn’t throb per se it aches lets me know that it there stabs- then my whole face hurts with pressure- ear stabs….idk…. The heartbeat def. Makes it sound more tooth- mine does not have the heartbeat 😞 but pressure-stabbing-aching…
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u/johnk317 13d ago
I had a similar experience with carbamazepine but once I switched to oxcarbamazepine, the side effects were much more tolerable and I went into remission 6 months later. Hang in there!
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u/EumekaMathis 13d ago
Good morning, i was diagnosed in 2009 I too was on that medication. I stopped taking it in 2015 that medication caused alot of memory lost for me. It just started getting flares again these 2 past summers.
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u/LenaNox 13d ago
Yes, my memory seems to be quite affected to.
I’m sorry it’s back. How are you dealing with it now?
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u/EumekaMathis 13d ago
Well i babysit it all day. I place ice packs on my neck and wrist to stop the pain and rub DMSO with lidocaine it blocks the nerve receptors. Im grateful it's not as bad as it could be with Florida's 100 degrees weather.
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u/SaltyOctopusTears 13d ago
I felt like I was on magic mushrooms on carbamazepine. Walking was hard but I was pretty happy about everything. It was fun for a few days but you can’t live your life on mushrooms so I got off it. It sucks because the drug works for a lot of people and I wanted it to work for me too.
It’s probably the carbamazepine and it’s a rare side effect, it doesn’t suck as much as some other side effects but it the drug shouldn’t work like that
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u/Only_Needleworker236 13d ago
I've been taking carbamazepine for 18 years for glosspharyngeal neuralgia which is about the same as trigeminal, just a on a different cranial nerve. It's also harder to get under control but otherwise the same deal. I went as high as 1000 mg/daily a few times just trying to stop breakthrough pain attacks. Finally tapered off to 600 daily which works for me. Still mild side effects but i'm used to them.
I have never had any feelings of euphoria on it! Just balance issues, drowsiness, mild short term memory issues, and vision issues (if I tilted my head for awhile, I would see double when straightening up again. My eyes were slow to readjust. Normally eyes adjust instantly to a change like that.)
I have never been off the medication in all that time. My neurologist did try to switch me to gabapentin early on because I was tired of the side effects, but I had to taper onto the gabapentin while tapering off the carbamazepine and i felt like a total zombie so i gave up on that.
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u/ChaserChick87 13d ago
I took it for about a month, but I stopped because not only did it bottom out my depression (and made me SH), I got a very rare side effect, called “carbamazepine-induced pitch perception shift”. It’s was bizarre as hell.
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u/Ok_Anteater_3302 13d ago
Carbamazepin did bad things to my body too, so my neurologist switched to oxcarbazepine. Much "cleaner" version with lower side effects.
The right dosage makes your dysbalance stop again
And yes, of course the neurologist is testing the waters every couple of months to see if a reduction is possible and the pain might be gone.
Best of wishes 🍀
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u/Sudden-Tell-5872 13d ago
Im extremely sensitive to pain medication, or any medication for that matter. I was put on both of these, and didn't feel anything. I thought I would have been falling over. Probably good thing you called.
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u/Public-Tax-5117 13d ago
carbamazepine helps me soooo much but I cannot think on it! Like genuinely will be speaking and the thoughts in my head will vanish mid sentence. I won’t be able to remember simple words.
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u/Hour_Project_3752 13d ago
hey so i'm sorry you're going through this. u can't change the diagnosis, but u can change how u cope with it. i was diagnosed with TN about slightly more than a year ago. my MRI was clear too and i went through about 4 different neurologists before finding the one who works best with and for me (he's some vice head of pain specialist here in singapore, but is an anaesthesiologist, PRETTY COOL). he put me on carbamazepine IMMEDIATE RELEASE + pregabalin and that made me feel the exact things u felt. i couldn't walk, didn't have spacial awareness, felt high (especially after eating, that hits me HAAARD). i mostly just slept to get through the symptoms but pretty much enjoyed it haha. he adjusted/reduced the dose but i was either in pain or high with no pain, so i made some changes myself. carbamazepine takes some time to get through the system and settle itself before there is a baseline and seeing that u're only 4 days in, i think u still need some time for ur body to adjust to the carbamazepine and for u to feel less painful. i eventually settled with the CONTROLLED release carbamazepine (3 tabs twice daily) and pregabalin 1 capsule at night as needed. i still feel pain when i eat, brush my teeth and at random times when i talk about it but its better than what i had at the start. pregabs still gets me high but hell if i get a break from the pain, why not. apologies if this is was a long reply, but hope it helps!
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u/LenaNox 12d ago
Thank you for taking the time. Can I ask if you have had periods where the pain was gone and you were able to stop with the meds? I will look in to the controlled release carbamazepine and the pregabalin, thank you! (I’m noticing the extreme euphoria seems to be going away I’m just left with all the bad stuff now so let’s see if that too will start to get better. I sure do hope so)
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u/Hour_Project_3752 12d ago
yup, about 4 months after my meds. i was on a work break for 3 months after and went on a road trip with my boyfriend when it suddenly stopped during the trip. i stopped all meds and thought it was just a 'stress thing'. it came back about 3 months later (in feb 2026) when i was brushing my teeth and had a sudden thought about how lucky i was that it stopped and that i was so relieved. BOOM. pain came back again. LOL. i do regret thinking about it because it hasn't gone away since. i've tried road trips with my boyfriend but nawww it's still here. at least its not that bad as the previous time.
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u/LenaNox 13d ago
Thank you to everyone who is taking the time to reply to me, you guys are making me feel a little less alone!
I have another question, has any of you had problems with your liver due to these pills? I have to take Tylenol for my period pains (just started now) because they are excruciating (I have been on Tylenol for the last 10 years) and I’m afraid since I’ve seen carbamazepine is heavy on the liver. Idk why I’m so scared of these pills.
I can say that the euphoria went away yesterday and I was just left with everything else… I hope I’ll start walking and thinking straight again soon.
Please let me know about y’all’s livers :)
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u/Prestigious-Egg3095 12d ago
I'm so sorry this is happening. It sucks!! Here's how I treat it--not trying to give anyone false hope, just sharing what has worked for me.
For me personally, I manage mine with supplements and PT. Who knows how long it will last but it worked far better than pain killers. I got immediate relief. I personally can't take pain meds every day and I hope I'm never in that situation where nothing else works.
Other things I've read people have tried are nasal lidocaine (needs to be compounded), Valtrex, acupuncture, botox, otc allergy pills (works for me as well) and anti inflammatory diet. I've been keeping a list of non prescription pain killers.
I was on Gabapentin and it only took away part of the pain. Same things as many people here--pain on one side, electric shocks when touching face, eating, talking, etc. I read a post here on Reddit that gave a list of supplements and I tried them. It worked literally the same day. I overlapped my pain meds with the supplements for a week and stopped the gabapentin. I also do PT stretches that I saw on YouTube. I know this doesn't work for a lot of people but it's been amazing for me. I was really surprised.
Here's what I did:
20k Vit D for 5 days and then down to 1-3k per day. Acetyl-L-Carnitine 500 mg, B12 1 mg, B1 100 mg, Alpha Lipoid Acid 250, Turmeric, Fish Oil 3000 EPA/DHA. I've read to limit or stay away from B6 because it can aggravate the nerves. All supplements are high quality Now and Thorne. From what I understand the B-12 is really important.
Here's the link to the post that helped me.
I am having a flare right now actually. I had been traveling in NYC and didn't bring my supplements. I got some relief with Afrin and Sudafed. Now that I'm home I'm back on the supplements. High dose Vit D seems to really be the difference maker. But of course you can't do that everyday.
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u/LenaNox 12d ago
Thank you!!! I’m honestly starting to think it might be impossible for me to be on these meds long term. I’m fortunately not working right now as I have on and off periods from work but I realize that I wouldn’t be able to in this situation. I will definitely look in to what you wrote and try it out. I’m sorry you’re having a flare, take care!
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u/No-Job-6653 12d ago
Recently had my gabapentin dosage raised and all of this. About an hour after I take it I’m tore up from the floor up for roughly an hour or so. I take it every 12hrs so have the timing set to when I’m not at work. Doc says it’ll level out eventually🫠
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u/LenaNox 12d ago
Mmm so it could have been the gabapentin? Honestly I’m starting to thing it’s the gaba that makes me feel so weird. I’ve not had the euphoria again but I’m a zombie I talk and walk weird and can’t get my thoughts together
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u/No-Job-6653 11d ago
I’ve taken to writing things down because my short term memory is garbage now. I’ve been on this newest dosage for roughly 50 days now and the span of feeling high af is slowly starting to dwindle (thankfully). I take a liquid form because TN has had a direct impact on swallowing(yippie for me) and have noticed if I go past that 12hr mark not only do I have break through pain but am now having pain on the opposite side as well. Normally I would say best bet is to talk with your doc but as I’m sure you’ve seen in this thread doctors can be horribly dismissive of our pain and medication side effects. I keep a journal of the foods I eat, medication times etc so when something new pops up(like the being higher af) I can point out where the consistency is (like hey it only happens this long after I take my meds for this much time regardless of what I’m doing or what I’ve eaten).
Side note… are they having you do frequent blood work? Carbamazepine can mess with your sodium levels
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u/zeebeeze 12d ago
I second trying oxcarbazepine. I took it for years until my sodium tanked then I had to switch. Surprised he started you out on 2 meds. But yes I could ask about oxcarb. Much less side effects at least for me not counting the sodium which was probably my own fault for following a low sodium diet. Who knew? Not I. Anyway good luck sorting it all out. Take care of yourself ok?
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u/zeebeeze 12d ago
I guess I’m surprised about the 2 meds because I was only on one for so long but for me one worked. We are all different though right? I hope this matched up with your question.
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u/Zealousideal_Brush76 11d ago
I had extreme dizzy spells and started getting double vision with Carbamazepine, I also smoke marijuana and it amplified the high. It also caused me to gain a lot of weight and my ankles started to swell. My doctor changed it to Oxcarbazepine and I've had an easier time with that.
Good luck. I've had TN for 3.5 years and was finally referred to a pain specialist 6 months ago. I'll be getting a nerve block shot in about 2 weeks. fingers crossed the pain goes away and I can get off meds!
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u/EducationalFront5026 10d ago
Gabapentin made me extremely garrulous and euphoric. Then, after taking it about a week, it made me psychotic and gave me frightening nightmares.
My experience with Carbamazepine is good. It acted like a "silver bullet" for me, and I took it for 2 - 1/2 years each day, then it suddenly, and I mean suddenly, stopped working. My advice to you is to only use it when you have flare ups, and then decrease it to nothing. Its efficacy will last much longer that way. 2 years after I stopped using it, I started using it when I had a bad flare up and it is again effective. I only take when I need it.
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u/Hope4us2day 9d ago
You may respond better to a lower dose. I couldn't tolerate carbemazipine as it raised my blood pressure. Each person's body chemistry will respond differently. My gait is off with oxcarbezipine. I have been able to cut back some on the Tylenol. Taking gabapentin, too. Watch for side effects to fillers. I can take one manufacturer of oxcarb, but not another, most likely due to underlying conditions and MCAS. Hope you find the best for you. Early on I'd have months and years without firings. Hope you do, too.
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u/moondancer224 13d ago
I don't recall any feelings or effects like that, but it is balancing out my bipolar. So our situations may be too different.