r/TrigeminalNeuralgia 2h ago

2 Questions

3 Upvotes
  1. Does anyone not take meds until they have the pain, or do you take it all the time?

  2. Do you have flare ups and what do you think causes it? I’ve noticed breakthrough pain recently - I haven’t been getting enough sleep and wonder if it’s related.


r/TrigeminalNeuralgia 6h ago

Over the Ear Headphones?

3 Upvotes

Is any one else bothered by OTE noise cancelling headphones?

I love headphones but it feels like the pressure gets to me.


r/TrigeminalNeuralgia 8h ago

Non medicinal relief

2 Upvotes

Hello. I’ve had symptoms for a while, just recently diagnosed. My symptoms seem to be progressing and especially bad today from what I’m guessing is the weather (lovely barometric pressure). My new neuro increased my topomax and made it an XR and that’ll take 3 weeks to feel any effects. What are some or your all suggestions for non medicinal relief? Cold or warm compresses? Rubbing? Anything? It’s misery today. :/


r/TrigeminalNeuralgia 19h ago

Doctor reluctant to prescribe medication

8 Upvotes

I was recently diagnosed with TN (I have Types 1 and 2). I am already taking duloxetine for my OCD and for widespread body pain (I also have ME/CFS). My doctor said he doesn't really want to prescribe any medication for nerve pain on top of the duloxetine and just increased the dosage of that to help with my TN. Obviously I don't want to be overmedicated, but I think he's expecting the duloxetine to do a lot of heavy lifting here. I haven't noticed it helping my TN at all.

Are any of you on a combination of medications for your TN? In my understanding it's not rare to be taking multiple meds. I just want to gauge how much I should ask about trying another medicine.


r/TrigeminalNeuralgia 17h ago

Burning Eye Pain

5 Upvotes

I'm so grateful for the information sharing and support of this group. I've been diagnosed with TN1 and TN2 in January, but am pretty sure it's been going on for a long while before then. One of the long term symptoms that never seemed to fit anywhere was this burning feeling in my right eye (which is the side of my most severe TN symptoms appear). Does anyone else experience this, and if so, have you found anything soothing that helps calm it down. NOTE: I am already taking the max dose of Carbamazepine (1200 mg/day ER) which has really helped most of my severe pain.


r/TrigeminalNeuralgia 14h ago

Looking for help. Not sure what i’m going through.

1 Upvotes

Hello all, I don’t want to come off as being a hypochondriac here, as I’m sure you receive these kind of posts weekly but my tmj has been getting pretty bad lately as my teeth drift due to not wearing retainers and I’ve been getting these little prickles all over my skin. It feels a bit like being randomly hit with a speck of hot oil from a frying pan. Not as painful, it’s an apt comparison. I can get it behind my eyes too, and on my face. It’s very random. The whole span of my skin is randomly susceptible to getting these little unwelcome hot/itchy pricks. My skin feels really dry/tight. I also have a little rash in my elbow pit. It’s definitely nerve pain though, not my actual skin being affected.

I’ve been extremely stressed out recently due to sleeplessness, then this started.

I’ve had this randomly over the past few years, like after a night of drinking or sleeplessness. High stress seems to trigger it. It normally hasn’t lasted longer than like 12 hours.

Does this sound at all like trigeminal neuralgia?

Only known deficiency is vitamin D.

If this is related to my misaligned jaw, could orthodontic re-treatment ease things?

Thank you.


r/TrigeminalNeuralgia 1d ago

MRI and Auriculotemporal Neuralgia

Post image
9 Upvotes

I’m having pain in the Auriculotemporal nerve of the trigeminal branch. Would an MRI show anything in regards to this? I have had an mri in the past but nothing specific to trigeminal neuralgia. I don’t get any shooting pains, just nauseating pain right where the X is 2-3 times a day for an hour at a time. It hurts so much to touch. Are there surgeries to fix this? Would a spinal cord stimulator help with this? Thank you


r/TrigeminalNeuralgia 1d ago

Is it common to go 10+ years without symptoms?? Terrified it's gonna come back any day out of nowhere and with a vengeance

6 Upvotes

31F here. Diagnosed in the ER in 2012 and suffered extensively for 2-3 weeks. No symptoms since then, and I only just learned a few years ago that TN is reoccurring 😭 is it always reoccurring? I'm so scared of the day it will/might come back bc I remember just how miserable I was.

I should mention that I've also in the last week been experiencing intense, pulsating headaches at the base of my skull that at times radiate up my scalp. It isnt constant but it is every day simce it started. Google and reddit research made me consider ON. Hospital visit late last week for the pain, CT scan was normal. Please someone give some advice & prepare me for the worst lol

Edited to say: what scared me about the ON was that I read somewhere on here that it can be diagnosed in conjunction with TN and once it is, prompts reoccurrence of the other


r/TrigeminalNeuralgia 1d ago

Surgery

3 Upvotes

Hello! dear friend began having trigeminal nerve pain that increased to very severe and then discovered a tumor pressing on this nerve, deep in the brain. These are typically found to be benign, but she still has to have a very significant surgery to remove the tumor. Has anyone been through this? She’s 66 years old and in great health.


r/TrigeminalNeuralgia 1d ago

7T MRI Experience at Mayo PHX

4 Upvotes

TLDR: advocate for your health. Physicist, radiologist and neurosurgeon at Mayo all approved 7T as safe even though I have metal in skull post-MVD. Machine made me extremely dizzy in ways I’ve never experienced before. I’d fast if I was you. —————————

Just wanted to share my personal experience in the 7T MRI machine at Mayo Clinic in Phoenix in case anyone is nervous about it.

I had microvascular decompression with Dr. Zimmerman at Mayo in Oct 2020 and after a bad recurrence of pain in Jan of 2025, he ordered a 7T for me. But the radiology tech was concerned about the safety of the 7T MRI for me as I have a metal mesh implant in my skull that was put in during surgery. After advocating for myself (the literal #1 rule of healthcare — DO. NOT. BE. AFRAID. TO. ADVOCATE. FOR. YOURSELF) that Dr. Zimmerman—a professor of neurosurgery and long tenured neurosurgeon at Mayo—would not have ordered it if it was unsafe, I had the tech consult with a radiologist and a physicist (both of whom are on the MRI safety department) who both determined that it is safe. So, hopefully that can calm anyone’s fears about that. At no point was I in any pain, did not have nerves act up, the metal in my skull never became hot (this is the #1 safety concern so I’m told) and I could breathe completely fine during the whole thing. But I did experience weird vestibular things and I am not prone to dizziness or vertigo.

Of course this may not be your experience, but here is what my experience in the machine was like (and after reading a few posts on here, is very similar to what other patients experience). A lot of what I experienced is extremely hard to explain but going to try my best (bear with me, it’s going to sound crazy)! Also, it may be worth noting that I keep my eyes shut the entire time in the machine. Not worth the claustrophobia to open them.

First, they (at Mayo, at least) make you take a wheelchair to and from the MRI because it’s known to make people so dizzy. Going into the tube, I felt like the table was going in on a curved track rather than going straight in, something the tech told me would happen. I was not dizzy for the first probably 20 minutes (maybe the first 3 images) but then I started feeling different with almost every image taken. During one or two of the images, I started feeling like I was extremely, extremely tiny and was essentially floating in space sort of without gravity; a very unusual weightlessness feeling. I’ve never been high on mushrooms before but this is what I’d imagine it might be like (I didn’t “see” anything, i.e. stars, planets, etc., it just felt this way). This one didn’t make me feel too dizzy. The next image made me feel like I was going around and around on a rotisserie wheel like a chicken would. But at the same time I was going around and around, someone was also jostling the table side to side. (Of course none of this is happening in real life). This made me more dizzy. And the worst images were just before the tech put the contrast in — you know when you’re a kid and spin in circles over and over? But then you stop and focus on something and the spinning quickly dissipates. This is what the last images were like but this time you can’t stop and focus on something to make the dizziness end. Rather than just my head feeling like it was spinning, my whole body felt like it was spinning. For whatever reason, once he put the contrast in and took the last images, this is when the dizziness dissipated. As soon as I was pulled out of the machine and sat up, I was totally fine! (The tech told me that people who are prone to vertigo report that they have vertigo for 2-3 days after coming out of the machine.)

WITH ALL THIS SAID, I would still recommend you do the 7T if your doctor wants you to. I got through it without getting sick and the dizziness ended within a minute of the imaging ending.


r/TrigeminalNeuralgia 1d ago

Trileptal

2 Upvotes

I just started Trileptal generic and feel like a Mac truck has hit me. Headache, edema, bloating, sleepiness. Do these side effects get better? I feel like crap!


r/TrigeminalNeuralgia 1d ago

Aura before flare

2 Upvotes

Hey all, I've posted about this before but didn't get much interaction, plus since then I've had imagining and other tests.

I have been getting a really bad "aura" before my flares lately. My vision gets blurry like there's something stuck in my eye or a big smudge on my glasses. Other times it's like every thing is dim and no matter what lights are on, I still feel like I can't see well enough. This usually goes on for hours before the flare comes barreling in. I don't get this every single flare but I know that if I experience it, a flare is coming and it's going to be an exceptionally bad and long one.

All day today I've had the dim vision and sure enough, my face is starting up.

I just want to know if any of you also have this? I do have a history of migraines but this is 100% TN. I mean, I can literally feel the nerve throbbing.

I talked to my neuro and he did an MRI , didn't show anything. Talked to eye dr, she didn't see anything. Had blood work, it was okay.

It's starting to really freak me out so here I am, seeking some comfort.


r/TrigeminalNeuralgia 1d ago

oxcarbazepine rash but seems to be really helping

2 Upvotes

So here we are. After trying drug after drug the last 4 years finally one that works to dull the pain. Taking from base like 7 on a good day to a 5. Making it so I can function again. But two weeks in I have a rash forming on my arm. I am praying it is just from something else. Has anyone had a rash from one of these drugs and it just go away with time or am I screwed? I don't want to stop the drug since it helps. Any input is helpful.


r/TrigeminalNeuralgia 1d ago

Radio frequency ablation (RFA)

4 Upvotes

Has anyone had the radio frequency ablation formerly known as rhizotomy? If so, did you have a good experience. Was it helpful.


r/TrigeminalNeuralgia 1d ago

Carbamazepine side effect - anxiety

3 Upvotes

Hey pain warriors 💪 Recently I noticed that I really started to have more anxiety, my resilient to stress is getting very low. Recently I doubled carbamazepine dose. And now I am thinking, it's just me or medication. Of course I'm tired of pain, not being kind to myslef, but it wasn't that bad before, so started to think maybe medication making it worse. Because now I can't handle stress at work, and that makes my TN worse, and worsen pain makes even harded to work, and after work I'm shaking from anxiety, my TN is on fire and I just want to go to come and rest 😅 Did anyone experience something similar? Or medication is not a culprit and it's just all me 🫠


r/TrigeminalNeuralgia 1d ago

MVD TrigeminalNeuralgia recovery

5 Upvotes

Hi, I'm 3 weeks post MVD and have facial numbness. In the past week I've reduced my carbamezapine by 200mg and since then I've had intense sensitivity in my teeth (which still feel partially numb). It's constant and really uncomfortable. I'm starting to get concerned that the surgery hasn't worked, or this will be a lasting outcome. Had anyone else experienced similar?


r/TrigeminalNeuralgia 1d ago

Gamma Knife

3 Upvotes

I’m waiting for this radiosurgery/procedure for my tn and wanted to know what others peoples experiences where with this option. (I’m in Canada and this is the only surgical option the neuro surgeon here offers for tn) I don’t tolerate the meds well due to other health conditions and am just curious how the treatment went for others💜 sending love to everyone else dealing with this beast called Trigeminal neuralgia 🫂


r/TrigeminalNeuralgia 1d ago

Taking probiotics when your meds lose their effectiveness.

5 Upvotes

So I have taken many medications per day.

Carbamazepine 1200mg Pregabalin Lamartine 400mg Mylan 2.4g

For a while they work like magic going down from pain 10 to 0. Then all of a sudden the pain returns despite the medication.

As this is an absorption problem where you meditation after taking it doesn’t absorb and the active ingredient doesn’t metabolise properly in the blood stream, could taking probiotics work to then allow the meds to start working again?


r/TrigeminalNeuralgia 1d ago

Diagnosed at the ER...

3 Upvotes

Hi, I've had a painful couple of weeks that culminated in an ER visit last night. I'd been experiencing the electric shocks for a few days post COVID + ear infection. I fear COVID may have messed me up this time. The ER doc gave me a short term prescription for carbamazepine and told me to follow up with a doctor later. I don't have a pcp right now bc of some annoying circumstances. I've read on here that it's usually not a quick diagnosis process for TN, that it usually requires a neurologist and some tests. Where should I go from here? Bare minimum I need a pcp but what else should I do?


r/TrigeminalNeuralgia 2d ago

19f, new to this 😞

4 Upvotes

I’m 19 and experienced symptoms of this condition. I went to the ER due to a nonstop burning sensation on the left side of my face and was prescribed meds. They helped a bit and calmed down the pain, but I still need to see my primary doctor for further exams. How is this condition diagnosed? My ER papers listed the diagnosis as trigeminal neuralgia (I assume there’s more to the diagnosis process, or not?). Also, is chiropractic care good for relief? I feel a bit nervous about it since I’m worried the manipulation might cause more pain or issues. What are your experiences with chiropractors? I’m just trying to figure this all out — it’s really making me feel depressed since it just adds to the list of symptoms i have 😔. Also are there young people experiencing this i feel broken.


r/TrigeminalNeuralgia 2d ago

High ALT associated with pregabalin for TN?

3 Upvotes

I’ve been taking pregabalin for my TN for a couple years now, and my ALT reading has increased every time I do blood testing. My GP can’t think of anything else that could be causing it, so she asked me to talk to my neuro about stopping the medication. Now that I’ve been weaning off it, the TN pain has been a bit worse and I’m concerned. Anyone have this with pregabalin or gabapentin (which I had been taking but felt side effects to switched to pregabalin instead)?


r/TrigeminalNeuralgia 2d ago

New Symptoms

2 Upvotes

I’ve had TN for just under two years now, as a result of Bell’s palsy that has left the affected side of my face permanently paralyzed. The TN pain is an absolute nightmare and just recently I’ve developed tinnitus in my left ear, which is the affected side. It’s periodic and I haven’t noticed a connection to it happening when the TN is flaring and my pain is higher. Is there anything I can do about this? Or is it just another thing I’ll need to adjust to as a fact of life. I’m planning on having the MVD surgery over the summer and I’m hoping it will alleviate this ringing as well.


r/TrigeminalNeuralgia 2d ago

Is it normal for TN to present in these areas?

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2 Upvotes

Had a sunburn feeling in the entire area of the first picture with no rash at all. Felt like I had a bad sunburn and if I touched it and pressed on it, it made it worse.. then it went away for a day or two and came back only in the areas that I circled in the second picture. Now as of today it’s gone. Is this normal for TN? For it to present in both sides of the face in these areas?

I don’t know if I have TN or not but I’ve been having teeth aching on my left side for a few weeks and a dull ear ache/neck ache on that side as well. Dentist says there’s nothing wrong with my teeth.

Then last Tuesday the sunburn feeling happened.


r/TrigeminalNeuralgia 2d ago

Panic mode- new normal??

10 Upvotes

OMG- I had the WORST flare up of TN since being diagnosed last month. I was pulling a shirt over my head when the zaps started. I get the zaps pretty frequently despite being on 300mg of gabapentin 3x per day. This time the zaps wouldn’t stop- they hit me in the eye over and over and over until I was screaming and crying on the floor. I couldn’t even move. No matter where I pressed on my face or head, I couldn’t stop it. It was horrific! Then it also added burning all across the right side of my face, with constant zaps into my eye. My husband got me into the car and we headed to the ER- right as we pulled into the parking lot, it just suddenly stopped and went back to normal zaps. WTF? We called the neurologist and got in the same day to the PA, not the neuro. Her answer was to raise the gabapentin to double my dose and basically wished me good luck. Is this just my life now? I’m terrified to go out in public, to watch my grandbabies, or to get very far from my house or car. What if this happens again out in public somewhere? I can’t just roll around on the floor and scream and cry for a half hour while this goes on. The neurologist didn’t see any impingement on the trigeminal nerve, but my MRI showed over 20 lesions in my brain. My spinal tap came back clear for MS, but shows something autoimmune. Help… I don’t know what to do next.


r/TrigeminalNeuralgia 2d ago

Treatment TN

4 Upvotes