I’ve been diagnosed with TN since January. I’m on Gabepention. I mistakenly forgot to take my pills for 2 days as I left it at home while I was away. I’ve been taking again now. I’ve been experiencing very painful episodes for the past 3 days. It comes and goes. I have to go back to work and I cannot work with feeling this much pain. Tylenol won’t work. My neurologist is out of town until Monday. Should I go to the hospital? Or would that be a waste of time? I need to find relief! I can’t keep dealing with this pain! It wakes me up and I’m going crazy!!! Please any advice. I just want this to go again. So please, do you guys think I should go to the hospital? Any advice is appreciated.

Since toward the end of 2022 I noticed a burning pain in my right ear and then in early 2023 it got worse. I was on steroids in case it was some type of Bell's Palsy or something along those lines.

I believe my symptoms are caused by hydrocephalus which caused pressure in blood vessels and nerves in the affected area. My hearing was also affected for quite a while but has since partially recovered. I still have this lingering pain and it can make it hard to sleep sometimes.

But I heard it could be a form of trigeminal neuralgia or something a nurse told me was geniculate neuralgia. I am not sure what it is. An ENT told me I had some pressure in my right ear which would explain some of the hearing effects but not sure if it explained the burning pain. Sometimes it gets bad and I want to cover the area with ice.

Is there anything that can treat this? My GP prescribed carbamazepine CR for my mood but I found out it can help with nerve pain too. I haven't started taking it because I had surgery but I've decided that it might be worth a try to at least cool down this awful sensation that never seems to want to really go away and I find it bothersome to a point where I almost want to slap the ear in frustration.

Hi All,

33yo F TN on Left Side. I've got my first neurology appointment new Thursday and I was hoping any advice that might help. I'm in the UK and was diagnosed with TN just over a month ago by my GP. Is there any specific information I should bring? I'm a bit worried they will be dismissive or not know much about the condition.

Also I've been on carbamazapine100mg two times a day for just over a month and it seemed to work well but this last week I feel like the pain is getting worse again. How quickly do the meds need to be increased? I'm feeling some of the side effects already and I'm worried if the meds are increased they will just get worse. I'm really struggling to remember names and words at the moment. My mind just goes blank but I still feel like I should be able to remember.

Thanks in advance.

Struggling to find one who is knowledgeable… thank you!

Do any of you go to a pain management doctor? I went to my first one yesterday and he is wanting to put me on fentanyl patches. Have any of tried these?

Hi everyone, I'm a chronic pain patient for 2.5 years with tmd, it's awful, I'm taking amitriptyline which has lowered the pain, but wheb I've tried to lower my dose the pain has jumped back up.

My dentists was previously surprised by me saying how extreme my pain was with TMD and he wondered what he was missing.

I've looked up diagrams of the trigeminal nerve and it deffo hits the parts of my face that I feel pain in.

How many of you have tmd as well? My condition started very suddenly, seemingly out if nowhere aside from almost daily headaches in the years running up, but this was during covid and I pit it down to stress.

I had an mri around this time last year bit ko one mentioned anything to do with trigeminal nerve, would that have been picked up?

Thanks in advance

I've been feeling generally unwell this week. Tonight I had a cup of Yogurt as I'm on antibiotics. The cold Yogurt has started to trigger the pain.

I'm wondering if anyone else feels unwell the days before an episode happens?

Neuro sent request for MRI but with my insurance it’s over $1,000.. is this worth it if it’s not a fiesta MRI? Should I wait and push for a Fiesta MRI instead?

I’m wondering how you live with such horrific pain and if you have any quality of life. I’m brand new to this and life feels pretty bleak right now.

Can anyone tell me your experience about what medications or other pain relief modalities have worked best for with TN2 caused by nerve damage?

In my most recent visit with my neuro I was recommended to look into MVD as a fix for my trigeminal neuralgia, which I've had for about 9 years now, bilateral, though in the last few years mostly on my right side. It started on the left for years, then was bilateral for a while, now primarily on the right and is the most painful and frequent it's ever been. In september there was two different times that over days it just didn't stop hurting, day or night. Thing is, I also got a new set of MRIs done (I also have MS, and MRIs are used to keep up with progression and I get them yearly to every other year). I don't remember it ever showing on an MRI, actually, going back to my first one in 2015.

I do plan on bringing this up with my neuro, but I don't know how to really know if decompression would help if compression isn't really showing on my MRI. I mean, a single lesion that relates to my MS, a couple slightly bulging discs in my c-spine, and (what's new and worries me) disc dessication though it didn't say exactly where in the radiologist's report, but it didn't say any nerve compression. Has anyone else been in a similar situation where they have TN, but it doesn't show on a scan?

Still homeless sadly, but I’ve had only ONE episode since my MVD, while I used to have agonizing episodes almost round the clock. Prettyyy good.

I was diagnosed with GN in 2014. I had Mvd surgery in 2014. I've been relatively pain free since the surgery.

Since the beginning of last week I've been experiences tics (pain). It is very muted compared to 2013. It feels more like a shock then a knife in the ear.

I'm diving offer the deep end in my mind that the GN is returning (I was told it's always a chance)

Has anyone else had pain return after MVD. What is your experience?

I went to a different dentist and he redid a filling and did a root canal. I'm now off carbamazepine. The carbamazepine did help alot. I'm hopeful it doesn't come back. I still have flashbacks of what I went through. The cscans, the mri, the er visits, the neurologist. The dentist I went to was more exspensive and seemed like he had newer equipment?

That’s all I’ve got to say. Sorry. I needed to express it somewhere.

If the carbamazepine causes me severe memory loss and greatly affects my ability to work, and it’s the only med that keeps my pain away.. do you think it can be considered a disability by SSA? Memory loss is listed as a covered disability

Has anyone ever gotten TN while pregnant and then it’s gone away after?

I’ve had random mild shocks and burning in both of my ears, jaw, back of head and teeth for the past month… finally went to a neuro and he told me he’s never seen anyone younger than 55 who has trigeminal neuralgia so it can’t be that… He said since I have chronic migraine (over 15 migraines per month) he thinks I have allodynia which is messing with the trigeminal nerve.. Could this be true or should I find another neurologist? He is increasing my dosage of gabapentin, sending me for an MRI, and also going to do botox on me.

I've been in hospital since Thursday due to having a really bad flare of my TN, the Dr's prescribed for me to have Phenytoin as that's what is supposed to work but it's not working and it also makes my arm have a burning sensation as it comes through the IV. I'm not able to eat or drink due to having constant shocks in my face and mouth, I can barely open my mouth. I'm having medication through injections and IV but nothing is working. My son turns 1 year old in 2 days and the hospital won't let me leave until I'm able to eat and drink and take my medication orally, I do understand this. I'm just so stuck and fed up

I'm shit at collecting my thoughts, so sorry if this reads a bit disorganised.

So last week I started having random aches and pains in my cheek, jaw, and teeth. I went to the dentist and had an X-ray taken, and they couldn't see anything obvious that could be causing the pain. After speaking to my parents, my Dad told me about how he deals with trigeminal neuralgia, so recommended I go to my GP and see what they had to say about it.

I saw my GP last Friday, and she agreed that it sounded like TN, so stuck me on 100mg of Carbamazepine a day to start out. I know it's not fast-action, but I've been feeling pretty fine since then - nothing above a dull ache in my cheek occasionally.

However, I noticed on Saturday morning that my bite feels off. I had a filling in my top right molar last year, which has been sensitive since, but otherwise fine. However, now whenever I clench my teeth together, I can feel my bottom molar pushing up on the filled tooth, and I get an itching pain just in that tooth. It's making eating a real chore, but hey, I was looking to lose a few pounds anyway!

I'm um-ing and ah-ing over going back to the dentist again, because it feels to me like the filling is interrupting my bite. My parents are insisting it's probably just the TN pain, but it feels very distinct and different to me.

Does anyone have any experience with their bite and how it could be connected to TN possibly? I'm worried about getting on the dentist's nerves (teeheehee) with frequent visits more than anything else.

EDIT: Also, I've noticed that taking a couple of ibuprofen pretty much takes care of the pain when I bite as well, which makes me think it's unrelated to TN, as the TN pain wasn't even touched by otc painkillers. I don't think my liver fancies any more ibuprofen though.

Hi my jaw is sore and both of my ears are fullness. Ringing in my ears . When I eat I get this weird flare up and dizziness. Every time I swallow or open my mouth wide I hear a clicking. I thought it was my ear popping, but it's not, Can it be the inflammation near me ear and pressing on my terminal neuralgia?. I have had a root canal done 6 months ago is it and it seems like what trigger this all. I'm so lost. I wonder if anybody dealt with this. I get dizzy when I'm working it sucks .

My dentist injured my trigeminal nerve while injecting a local. My GP prescribed gabapentin while I waited for neurologist appointment. I’ve been taking 1200 mg daily for a month.

Combined with 1000 mg daily of Tylenol, it works great for my pain, but makes me slow at work.

Should I stop taking it for a few days before the neurologist appointment? So that I can fully describe my pain and symptoms? Do they take images? Do they base treatment purely on what I tell them?

Any advice is welcome. I’m terrified of the migraine and TN pain. But, I want the neurologist to take me seriously.

I tried searching for other threads about this but did not find what I was hoping for.

My mom is having her first of two Microvascular decompression surgeries mid November and I’m hoping to compile an amazon list / general list of items that will be beneficial for her post op so that we can get them beforehand.

If you’ve had this surgery, I’d love to hear your recommendations on things you had that were useful as well as things you wish you had.

Thank you in advance for any advice!

My TN started after filling without root canals and then I got pulpitis, pain in the tooth got away but electric shocks continued and now I have TN2.

Current dentists say that the roots are okay now, but I wonder if anyone did the same roots again and whether it helped you.

Thank you!

So I had some weird nerve symptoms in the left side of my face for a while (numbness tingling) accompanied by a bad taste in my mouth, but no pain. I went off to the dentist assuming correctly that my wisdom tooth was infected, got it cleaned out it settled. I got a referral for an oral surgeon to get it removed. Whilst I was getting the check up it was found that I needed a first molar out on the same lower left side as the infected wisdom tooth. So I got that sorted. Oddly I barely felt the nerve block needle. Go forward about another month and the wisdom tooth infection blows up, still no pain but I feel really, really unwell and nerve symptoms numbness tingling increased a lot. I got the wisdom tooth removed last Monday, didn’t feel the needle again, but now almost a week later I have been suffering the most severe pain of my life. Initially I just thought it was pain from the surgery site, but that is now pretty ok. The surgery went well and oral surgeon said she could see the nerve and it was intact. Today I went to emergency and I’ve been bumped up to taking a higher dose of oxy today. I, pretty sure this an angry nerve, the inside of my cheek is numb and the pain is sudden and extremely severe when it blows up through my teeth on the left side upper and lower, up through my jaw towards my ear. I don’t know if it’s technically trigenimal neuralgia, but I thought I’d post just to find some support until I can talk to the surgeon tomorrow. Because quite honestly the level of pain is scaring the crap out of me, it’s severe and I can only hope whatever is going on is temporary, even though it’s getting worse. I just can’t believe how much it’s still hurting even though I’m maxing out my OxyContin dose.

Anyone’s TN cause stinging sensation in face and ear. Some times it’s pressure tonight it feels like my face is on fire. Man this crap is horrible!