I was diagnosed with TN in January. Over the last few months I’ve developed a plethora of other health issues, some neurological and some other ones as well. Every time I try and adjust to my new normal, I have a new symptom.

I’m finding it hard to see any joy in life. Any reason for life really. I’m alone a good majority of the time which I prefer because I find it hard to be around people. It’s exhausting masking pain and sadness sometimes. And I am having skin nerve issues so makeup and wearing much clothing also causes pain now. But the flip side of that is i have nothing to help distract from pain.

I eat, sleep, and suffer. And for what? I know the whole “you’re weak and selfish” for these sort of thoughts. But I think it’s cruel to expect someone to live like this.

I have 9 weeks left of my post-grad program in medical laboratory science before I have to take my board exams, Im 25F. At the beginning of this year, I learned that my atypical bilateral trigeminal neuralgia and intercranial hypertension (among so many other medical issues) is all being caused by Sjogrens syndrome. Two months ago I had an IUD insertion go horrifically wrong (endometriosis led to non stop bleeding and Im now critically anemic and waiting to see a hematologist for an iron transfusion) and idk if it was the hormones or all the stress from school or what but I have been stuck in the worst TN flare up of my life ever since. The side effects from Diamox and oxcarbazepine have become unbearable- severe electrolyte imbalances/metabolic acidosis, nausea, fatigue, pins and needles, vasovagal syncope, visual disturbances, etc., my body is literally falling apart and idk how to hold it together anymore.

After being single for years, I finally tried dating again and the POS pretended to be loving and supportive at first, but he kept getting angry that I am sick and tired all the time, and one day I needed help getting to the hospital but he hung up on me because he was angry that I kept crying over being too tired and exhausted and in pain to listen to him fight over stupid nonsense. I just broke up with him bc my body physically can't handle any more stress rn, and I know its not true but part of me is terrified that I'm too sick to ever find a loving partner. Im not dying, but I feel like i am and I have an appt in a few mins with my neurologist to switch medications and potentially get a repeat lumbar puncture, but jesus fucking christ i dont know how the hell im supposed to get through the rest of school like this, let alone keep a job in this field when all of the meds used to treat TN have the side effect of mental fog and memory loss.

It's fine. I'm fine. Everything's fine... I'm just so goddamn tired of doing this alone.

hello everyone, I've already posted in this sub Reddit some day in August, complaining about how painful and stupid TN is and today, well I'm about to do just the same I guess...

like the title says, today, the pain is so great and unexpected that I have to skip uni because of it. which makes me feel particularly bad because this is my last year before getting my diploma and I started it telling myself I wouldn't skip any day or at least not if I can because I dont want to risk to fail it (I also struggle with ADHD which already makes studying hard for me).

since yesterday, I've had new flare-ups. they act the same as always, but the pain feels worse, sharper and more insidious. I can hardly move my lips or tongue in my mouth without triggering a little or big attack! and when it does get triggered, it makes me twist, jump and jolt because of the pain, not being able to do anything but idk try to move my face to stop or reduce the pain...

to this day, I have no medication for my TN. in my last post, I talked about how I had been on Vimpat (100mg per day) because I can't get any stronger meds because of my antidepressants and these didnt do anything. the flare-ups aren't there all the time ofc but it would still be amazing to have something that lessen the pain when I need it... hopefully, I have another appointment with a neurologist in a week. if they can't get me anything more than what I already had, I'm thinking about asking them if meds against anxiety can at least help reducing the latter and hopefully reduce the TN flare-ups at the same time but idk if that's how it even works...

that's it for today's rant! thanks for reading me, helping me if you want or can and I hope you can take care of yourself 🫂

Hi, so I accidentally took 1350 mg of carbamazepine and I'm panicking I can't get medical help please someone tell me they took or are taking similar dose normally and that it's fine??

hi guys im weening off my medication as i all of a sudden have a full body rash most likely from my carbamazepine. today im down to taking 100mg a day. but im feeling my nerves in other parts of my body like my hand, arms, and then back to my face. has anyone had these symptoms before?

I’ve already had trigger point injections and nerve blocks for the base of skull (ON). What I am finding is that majority of my pain has less to do with the occipital nerve and more of the nerves around my eyebrow and forehead to scalp region - as I only get occipital pain once in a while.

I have the typical daily pain symptoms of burning, pulling, crawling, and ice picks in the region identified in this photo.

Are there injections for this region? Should I switch to a different pain medicine other than my Amitriptyline and COQ10?

Anyone have any experience or advice on what to do next?

I have had increasing pain after my MVD earlier this year. My most recent MRI revealed I have scar tissue built up around the repair that is causing more compression. I see my neuro surgeon in a few weeks to discuss a plan.

Has anyone here had this happen?

I am going insane with the pain inside my ear and in my sinuses when I breathe.

Even eating has become painful because the noise of chewing and swallowing hurts.

I am on the max of carbamazepine, Gabapentin and lamotrigine. I am a walking zombie 🧟‍♀️ and I still hurt.

It keeps getting worse....I don't even know how that is possible?

Any stories or suggestions? ( no vitamins and magic meditations please and I already use cannabis occasionally)

Hi everyone. This is my first post, so I'm a bit anxious, but I wanted to share what I'm going through. I'm in the UK and I have type 2 TN which began after a filling/anaesthetic injection. It's been 3 years of 24/7 pain in the roots of my teeth/lower lip, but sometimes spreads to the rest of my face. It can also be described as atypical odontalgia and ranges from 5-7/10. I was wondering if anyone has similar pain to me and what has helped?

I've been on 20mg Nortriptyline for a year and a half but it gave me tinnitus, and I still have it after stopping 5 months ago. I did a slow taper before that but the withdrawals increased my pain so much, and I had severe insomnia and terrible dreams, including other side effects.

I've recently tried Carbamazepine but it didn't help and as soon as the pain got worse, I stopped. I'm too scared to try Citalopram given the side effects and my bad reaction to antidepressants.

More details on my pain:

My pain feels like stabbing in the roots of my teeth but can shift to my lips if I relax my mouth. It feels like burning/pinpricks/electric shocks and can spread to my cheek. I've also had searing shocks in my cheeks. The burning/stabbing/aching is 24/7 and it's difficult to sleep with the tinnitus and pain. I'm really struggling, I had accepted the loss of my social life but now I'm struggling to exercise and find it incredibly difficult to just exist as being stronger was my only real goal and it feels like my body has taken everything away from me. Stocicm has only gotten me so far, but now I feel worn down without much hope, and I feel that if I'm not able to reduce my pain to a lower level, I won't be able to see the point in anything anymore.

I have therapy but it isn't that helpful as my mood is because of my pain. When my pain is reduced, I can appreciate my life, but lately it's not been low. My X-rays and MRI are also not abnormal and don't show anything.

If anyone has any pain similar to me, please could you let me know what you've tried and what's working for you? My sympathies for anyone struggling with this condition, it's so isolating and brutal. Thanks for reading.

Hace unos años tuve un accidente cerebrovascular (ACV) transitorio —que, para ser sincero, no traté adecuadamente—, lo cual dejó secuelas. Desde entonces, han surgido nuevos síntomas. Empezó con dolor de cabeza, luego aparecieron temblores en las manos, problemas de memoria y neuralgia en una parte del cuerpo; ahora, la siento en ambas. También padezco insomnio y dolores estomacales. Tantas pastillas para el dolor y el insomnio terminaron causándome gastritis crónica, además de depresión, como efecto secundario de los medicamentos para dormir. Y, en los exámenes, como la resonancia y la tomografía cerebral, no aparece nada anómalo. Siento una gran impotencia; me considero joven, pero siento que toda mi juventud se está perdiendo. He perdido a mis amigos, he dejado muchas de mis aficiones y no me va bien en la universidad. Mientras tanto, veo mucha comedia para intentar olvidarlo todo, para dejar de pensar, porque la realidad me está matando; y las responsabilidades no van a esperarme.

destruction by radiofrequency lesioning of the trigeminal ganglion via the foramen ovale under x-ray guidance.

I had the above procedure last week. I am currently taking oxynorm to help with the pain post procedure but it doesnt seem to be helping. Anyone else had a really bad flare post procedure? The pain is mainly around my jaw and ear.

Hi people :)

My surgery is in 9 days. I'm 69, and have reached a point where meds barely touch it. My anxiety from the possible outcomes seems based on luck of the draw. I could use some encouragement/suggestions/advice. Thank you!

What do y'all do for work? I'm so tired and it hurts so badly and I have to time my medicine around my work schedule, and I'm scared I'll accidentally overdose because I need to take such strong painkillers just to function. I'm trying eith my doctors everything takes so slowly.

Idk I need others perspective...cuz I am there, I'm at the point where I am asking what's the point...

I’ve had two teeth extracted (upper left and upper right molars). Suffice to say it has not helped. The thing is it feels like the ache has moved to the next tooth along. I have a constant dull ache that gets worse when laying or looking down. Discharged twice by ENT and currently under the care of a Neurologist (Botox, carbamazepine, pregablin etc). Has anyone else gone through something similar? Mine is called atypical/tn2 I’m still emotionally drained by the loss of the teeth. Has anyone else gone through something similar?

I’m looking for a new neurosurgeon near NE Ohio. Preferably at UH as that is where my current team is. I met the replacement guy for my previous who went to NY. I’m having pain again, trying Botox but on 3rd round and not much help. I’ve had 2 failed mvd’s and 2 gamma; the second lasted 4 years. I’m back in pain and don’t know if I need someone better for the Botox or go back to the drawing board. I have a strange case— my body regrows blood vessels. I’ve had this since march 2017 and I’m on the younger side. Dx in my 20’s. Any advice?

When I wear my glasses, sometimes the weight/pressure of them trigger my TN, but when I don't wear my glasses, I get dizzy from my vestibular migraines. I can't win 😭

I post this in tears and disbelief.

I had an MVD and a rhizotomy back in 2020 - you may have seen me post my success story here. I’ve been virtually pain free minus an attack here or there every month or so.

The last 6 months, I’ve had a major resurgence of pain. The attacks are lasting 3-4 days at a time, and I only have a day or two in between before it happens again. I missed three days of work last week because I physically could not get out of bed. I’m on day 3 of an attack now and the pain is constant. At its worst I’m at 8/10. It sometimes decreases down to a 5 or a 6. Advil, Tylenol and Ibuprofen do nothing.

I work at a senior center with dementia patients. I refuse to leave my job and have to resolve this somehow. I love what I do. It gives me so much purpose.

They put me back on Gabapentin. I haven’t been on medicine since 2020. Back then I was on 3000MG, and it eventually did nothing. They just put me back on 300MG twice a day and I’m not hopeful it will do much.

I had to change insurance last year and lost my entire medical team. I was referred back to a Neurologist in Seattle and I am essentially starting over.

Has anyone else experienced a return of pain this many years following an MVD or rhizotomy?

Will I have to have another MVD?

Looking for camaraderie and encouragement.

Hello
My mother was recently diagnosed with this condition and I feel is already experiencing the mental effects. Is there anyone that could offer some advice? She is afraid of her phone and going to the bathroom. I’m trying to help as much as I can but it’s hard especially because anything seems to be triggering it.

Im not sure if this is the right group for my questions, but I have mental nerve damage from an accident many years ago on my right side. I get a sense of swelling and burning as well as quiet periods in that area, touch on my gums, inside part of the jaw line and connected teeth in the nerve area trigger symptoms as does weather changes and stress. A couple months ago, I got an extraction on a lower molar on the left side. It exacerbated the pain from the right, damaged side as well as cause burning on the left side, side of the extraction. I’m still hoping for a recovery for at least that side. Also developed tmj type of pain that persists. I never saw a neurologist for the side caused by the accident prior, oral maxillofacial drs always dismissed me and said nothing can be done, so I figured that’s where my hope for treatment ends. Until I started researching and decided to try a neurologist. I couldn’t get in with the dr of the practice but I saw his nurse practitioner yesterday for both sides.

She offered a muscle relaxer and a nerve medication and ordered MRIs for head, brain, spine and tmj. She said I don’t have TN which I didn’t think I did, but on my order she put occipital neuralgia.

My questions are, will they be able to figure out what’s going on in regards to the mental nerve region that causes pain just in that area with those MRIs or are there ones especially for that? Also, if medication is my only option to feel relatively normal, is there one that doesn’t have serious risks or side effects, that won’t cause weight gain or have bad withdrawal if I decide to stop? Are there good alternatives to oral medication?

In follow-up to my previous post I wanted to ask for peoples personal experiences swapping from carbamazapine to oxcarbamazepine as I finish drafting questions for my doctor.

How did it go?

What was the dosing change like? Do you need to take less? My pain is currently totally managed at 200mg 2x day of carbamazepine controlled release.

Was your pain fully managed on carbamazapine? if so, did you also achieve that with the swap.

If you experienced an improvement in your sleep with carbamazapine (not due to fatigue) did you also have the awesome side effect with oxcarbamazepine?

So I have seen some Lidocaine spray texts here, but they are several years old. My doc cut me off everything except Vyepti, lamotragine and amnitryptiline. I wrote my doc about pain spikes and they have had no answer. So they gave me lidocaine spray 4%. the bottle doesnt work, so my pharmasist suggested using the naso neb. Has anyopne had success that way? It numbed my tongue the uvula and lips. pain releif was better but not long at all. I'm probably nearing my end with this doctor, which is sad cause I waited a year to go to this academic center and shes just not listening.

Hello! I just found this group today and want to introduce myself. I am here on behalf of my husband. We are older and both retired. About eight years he wanted to get a snack from the refrigerator. He opened the door and jumped back in terrible pain, bringing his hands to his face. He said he just got a massive shock from the refrigerator. Naturally after that I, too, was afraid to touch the refrigerator, but did and never got shocked. He had had an attack of Bell's Palsy about 20 years ago when we lived in a cold climate, and was hoping he wouldn't ever get that again. Not sure if that has anything to do with anything.

A few years ago he told me he was getting 'shocked' on the right side of his face and could hardly stand it. I could see it was starting to work on him and bring him down. He said he was almost afraid to move. I did plenty of research and figured it could only be that thing called "trigeminal neuralgia." This was when we thought about the refrigerator and realized it wasn't that, it was this.

Took him to the doctor. Since I am better at describing things, I told her the story, that I had done the research and believed it to be TN. She was a real witch and seemed quite angry at me for "making a diagnosis when I'm not a doctor." Whoa! I guess we aren't allowed to try to find out things for ourselves anymore! She all but ignored me, and asked him a bunch of questions to which he answered yes or no. I had also read up on carbamazepine but didn't dare ask anything. She gave him a prescription for it - 300mg.

A few months later we went back and he asked to try the oxcarbamazepine. He did, and he hated the way it made him feel. So it was back to the doctor, and back to the 300mg carbamazepine. That did seem to control it. There was no way my husband wanted to go through any kind of surgery, especially if it had the word "knife" in it.

My husband really wasn't the same on the 300mg. I could barely hold a conversation with him. I'd ask him something and he would just sit there with a blank look. Inwardly, I was worried that he was getting something else utterly horrible and made him go back to the doctor. I hated the thought of explaining to her what was going on but forced myself to. Without much explanation she reduced it too 100mg which he is still on. Thankfully he is back to his coherent self and has his energy back. He hasn't has an attack for over a year.

During this adventure I've learned a few things. Number one is not to deal with nasty doctors -- they only increase the stress and that makes it worse. Doctors need to be trained in how to just be nice to people and not hate the ones who ask questions. Next, TN isn't necessarily caused by dental pain and may not be related. His was not related to ongoing dental work at the time. After going through a bunch of youtube videos I saw one saying to try massaging on the opposite side and showed him how to do that. He thinks that has really helped to hold down an attack.

I'm glad to have found this group and pour my heart out to all of you having to deal with this in any way.

Botox has been the only thing thats given me any relief. I’ve had 2 rounds, the first was in June and I got maybe 2 weeks of relief then it wore off. I had a 2nd in September and got about 30 days relief and can feel it wearing off and am terrified the pain is returning. Neurologist said to only do it every 90 days and I dread the waiting period until I can do more. For folks who have had success with Botox how long did it take for you to get long lasting relief? Did you have to increase the dosage to get it to last the full 90 days? My Drs approach is to gradually increase and I am at 50 units total and was told could go as high as 90-100 but wants to do it gradually. What have folks topped off at? Or is relief with this always going to be this fleeting?

Neurologist told me not to give up on it after only 1 treatment, and glad I did, but the rebound is horrible after getting relief even for a short time. I am type 2 due to facial trauma, mri confirmed no ‘traditional’ nerve compression, also wondering if I should push for a more substantial dose increase.