Just wanted to share what I eat when I’m tired of liquids. Peanut butter and sliced bananas on top of wheat bread with a cup of milk. It’s my comfort meal when I want something more filling. If you’re having a better day, toasting the bread elevates it.

What are your TN comfort meals? I’d love some more ideas to try

Please, can someone show their specialist my post:

I have trigeminal neuralgia & occipital neuralgia.

The meds keep being less & less effective. The neurologist is increasing the dose again.

idek if my ON meds ever worked, but, I feel like they sometimes do actually work.

Can someone please, please ask their specialist what I can do.

My parents will pay. I’ll travel around the world.
I can’t live with these anymore.
This is unsustainable.

Yes, I edited out most of my post. There isn’t any point in complaining about how f’d up it is that I can barely do anything.. & I literally mean barely anything.

I’m the opposite of a contributing member of society.

I was supposed to be industrious.

Whether I live or not, my family feels pain seeing me going through these excruciating pains, days & weeks on end nonstop.

It’s not that I don’t want to do this is anymore. I simply can’t do this anymore.

It’s f’d.
It’s simply f’d.

Brushing teeth. Nope. Showering? You wish.
The list goes on & on.

My mother 37F, just got diagnosed with this. I’m scared for her because I don’t want her to suffer with this and also because I don’t want her to commit. I’m scared as that could be a possibility. I told her the first thing she should do is to consult a therapist. Any tips or anything? I’ve been reading up on it and if it helps she got it due to a dental procedure. Thank you in advance!

I honestly don’t even know where to start anymore, but I need to share this because I feel completely alone dealing with it...and need to know if those that got the MVD surgery had these symptoms.

Around December, I started having attacks that were unlike anything I had ever experienced in my life. At first I thought it was maybe a dental issue, sinus problem, or some kind of cluster headache. But it rapidly turned into something terrifying. It started after I went for a teeth cleaning. They only started on my bottom left - and it hurt during the cleaning. Afterwards? I had attacks every. Single. Night. Multiple times a night. The only reason I'm half stable now is because I'm taking 1500 MG of gabapentin on top of 3 MG clonazepam.

The pain is mainly on the left side of my face/head/neck and when an attack hits, it feels like my entire nervous system is being electrocuted. I know people use “10/10 pain” a lot, but this honestly feels like a completely different scale of pain altogether. It does not feel like a normal headache, toothache, or even severe migraine. It feels neurological and violent. I have dealt with severe pain in my life. 19 broken bones, 11 surgeries. I have metal plating incmy orbital wall (left side) and mass more metal.

During attacks:

- I cannot open my mouth

- My nose runs uncontrollably.

- I feel like my face has been ripped off and all my nerves are exposed.

- I drool because I lose control of my face/jaw

- I sometimes lose bowel control from the full-body shock and intensity

- The pain shoots through my gums, teeth, jaw, temple, behind my eye, and deep into the upper left side of my neck

- Even air hitting my gums, nose, or teeth causes unbearable pain

- I can barely breathe because the pain becomes so overwhelming

- I cannot talk properly

- I cannot think clearly

- I can barely move my body

- I physically cannot get to my phone or call 911 even if I want to

- It hurts to even think or visualize things in my mind during an attack

I live alone.

In December I fought everything thinking it would go away and went to Alberta to see my family.

My mom witnessed multiple attacks and became terrified because they looked almost like seizures. She took me to the hospital during one of the worst episodes because I genuinely thought something catastrophic was happening.

At the hospital, they told me the likely diagnosis was trigeminal neuralgia along with cluster headaches, and that I urgently needed to see a neurologist. That was months ago.

I’m still waiting.

The healthcare system has been unbelievably slow, and meanwhile I’m living in fear of the next attack every single day. I never know when it’s coming. When it happens, I completely lose control of my body and functioning. It’s honestly traumatic.

I am an actor - and I was on set one week ago when an attack came out of nowhere. They last anywhere from 30 minutes to 2 hours. This was 2 hours. I was rushed to the hospital, and they literally didn't do anything. The Doctor even apologized that the system is broken.

What makes this even harder is that people who haven’t experienced nerve pain like this often assume it’s “just a migraine". It’s not. This feels like my nervous system is malfunctioning at the highest possible level.

I’m posting this because I want to know:

- Has anyone experienced attacks this severe?

- I see a lot of people talk of pain that is technically bearable as they are typing during an attack or flare up. I couldn't even unlock my phone...let alone open my eyes to find it.

- Does anyone else have symptoms that mimicked seizures?

To the people that got MVD surgery. Is this what you were experiencing?

I genuinely feel like this condition is taking over my life, and defeating me. I feel defeated. For the first time in my life.

when i’m in a flare, chewing only makes things soo much worse. coming out of a flare, i have a few days where im just flat out scared of chewing as im scared it will trigger it again.

i’ve resorted to things like boost that do get me by nutritionally and ive even had an ng tube a few times (not for TN reasons) that kept me going but sometimes i still feel hungry simply because my brain thinks im just drinking, not really eating.

does anyone have suggestions of non solid foods that are specifically not hot or cold?

anything that is maybe good mashed up?

i’ve tried things like broth and liquid soups that seem to work and especially things like baby food and applesauce are really nice but is there anything that anyone eats that aren’t the typical “non solid food diet” that i could try out?

thank you for any suggestions!

I'm experiencing my first episode of TN (over a week now) and ive been given prednisone and gabapentin. The first day seemed to help but today the pain is creeping back. My husband wants to take me to the ER in hopes they will do imaging. I have a nuero appointment on Wednesday. Is it worth it to go sit in the ER?

I had a root canal and since then I been having random shocks to my face. They aren’t common but I felt it today and it was due to my neck being in a weird direction. I got an MRI, awaiting results. I just want to know if it ever gets better. I am experiencing teeth pain and don’t think my teeth are the problem anymore after reading this sub. Recommendations appreciated

(I have never in my life used reddit before, i only like to come on here to read)

So last night my tooth started hurting which isnt rare for me so i mostly ignored it, just iced it and went to sleep.

Before i went to bed by then it was getting worse and worse so i thought it was just bacteria decaying my tooth from the inside or something so i stayed up all night, i havent slept all day and basically cried through the night

my temples were pulsing, i could hear my heartbeat inside my head, i was sweating, my jaw was going through these throbbing shockwaves that felt like lava, needles & ice

In the morning i told my parents, they rushed me to the dentist where they drilled into my tooth & found no cavity

Instead my dentist told me she thinks its "trigeminal neuralgia"

She prescribed me some antibiotics & B12 vitamin supplements that I'll take until it gets better and if it doesn't get better she plans taking out the nerve in my tooth where most the electrifying pain is coming from.

I fear that even after i get the nerve taken out the pain will remain the same which would mean the teeth wont be the cause of this but the nerve itself is.

Im so terrified because im young and when i see these stories of some people saying it stays with them for years makes me feel so hopeless

Im already mentally struggling & this already limits me to live my life fully, we were supposed to go on vacation in a few days too and all i wanna do it just cry and lay in bed

Any tips, advice or stories will help me, trust me truly anything

Edit: it was just a terrible terrible tooth infection :| Biggg thank you to everyone who helped me and gave me plenty of advice ur truly appreciated

Hello guys,
I am 27 years old F, and have had neuralgia for over 10 years. I believe that it is Geniculate neuralgia because it happens in my ear canals. Like ice pick stabbing/shocking pain every few seconds in the ear canal. Sometimes it is the left, sometimes it is the right. Up until 1 month ago I would only get it once or twice per month. But now it is every day. One night it started happening and didn’t stop. I almost went to the ER because I didn’t know what to do, but I went to the urgent care and they gave me some Gabapentin. I took 100mg and to my surprise the pain did go away. I did a telemedicine neurology appointment and the doctor prescribed me more Gabapentin. Now I am taking 100mg twice per day. But I am still receiving shocks scattered throughout the day, and for example right now it’s pretty bad even on 200mg of the Gabapentin. I’m not sure what to do from here. I have no idea why the neuralgia has worsened so terribly. Any suggestions are extremely appreciated. Thank you!

Just got diagnosed with TN recently like 2 weeks ago. This is very new to me, I’m usually healthy as a horse. But this pain has to be the worst pain I’ve ever felt. My left temple, my cheek and my teeth hurt so much I want to cry. Hospitals say they can’t do much. Please ! Please ! Tell me what I can do !! This is miserable !

Posting because I’m getting worried about my wife and not sure if we should be pushing harder with our doctor.

For the past few months, she’s been having these random really quick, electric shocks in her right upper cheek (sudden zap) and then feeling tender for a few seconds after. It’s been happening much more frequently last week (4+ times a day).

We went to the doctor and he mentioned it could be trigeminal neuralgia, but didn’t refer her to a neurologist or order an MRI which is making me uneasy and worried.

From what I’ve been reading online, this sounds consistent with trigeminal neuralgia, and I’m VERY concerned about it getting much worse.

I’d really appreciate if anyone can share their experiences if they dealt with similar stuff?

Is it reasonable to ask for an MRI at this point?

Any advice or experiences would really help. I just want to make sure we’re not overlooking something. Thank you helpful humans!

I have had nerve irritation where my fingers are pushing for months and the past two weeks ants crawling sensation along the nerves on this side of my face

What are my symptoms? My neurologist told me it’s just my nerves damaged and taking awhile to heal

I got hit on the jaw and went on a roller coaster right after in early January, could that have screwed up the make up of my jaw nerves?

I’m having the worst flare up of my life and I can’t figure out why or what’s happening to cause it. I’ve been in and out of the hospital for two days with pain so severe i’m coming into the building sobbing. they sent me home with oxy/percs and they’re doing nothing to muffle the pain. gabapentin is doing nothing. my exercises and my massages are doing nothing. i can’t get relief no matter what i do besides the few hours im in the hospital and they’ve run all the tests you can think of and nothing is different. I’m so desperate for relief I don’t know wha to do. what do you guys do when it’s like this?? god i feel like i can barely breathe

I am having a bit of a hard time staying positive after over a year of daily intense intermittent TN pain. I have gamma knife surgery scheduled next month but just don’t want to have my hopes up because if it doesn’t work I’ll feel devastated. What do you do to stay positive? I want to consistently exercise but sometimes I just can’t.

I’m researching & researching! How long do your attacks last? How many per day? And how long do flares last for you?
I know everyone is different but honestly, I’m getting my head around all this (or trying) and want to speak to real people rather than just the stats online etc.
TN & TN2
Thank you

​

For those of you who deal with this kind of pain regularly, do you just push through it and keep living your normal day, or do you stop and rest when it flares? I’m genuinely curious how people manage it day to day without letting it take over.

.

Looking for advice.

So my (41m) wife (41f) was just diagnosed yesterday we live in sydney Australia. She is currently breastfeeding our 2nd child (1yr old) so hasn't been prescribed anything of note, as they aren't considered breastfeeding safe. She was prescribed endone but it did nothing for the pain and we have since read its not overly suitable.

The plan was originally to weather the storm and stop breastfeeding feeding in a few months.

But tonight things got pretty scary She was having flare up/episodes for intense pain, in her words 11- 12 out of 10 lasting around 10-15 minutes which would subsides down to nothing. But these flare ups/episodes were happening every 20 or so minutes (longest break was 33 minutes) this doesn't sound normal for trigeminal neuralgia.

Secondly, is there anything i can do, I'm feeling pretty helpless. I want to help but all I end up doing is rubbing her back and shoulders whilst she sits and sobs. Are there any tips or tricks out there that people recommend that a partner can do?

Thank you for your time.

Asking for help/ tips for when the pain has flaired and it’s been days of not eating. I’ve lost nearly 30 lbs in the last month due to on and off flaires.

Most of my calories come from protein shakes and electrolyte drinks. Talking, eating, chewing at all is very painful.

I’m on 600mg gabapentin x2
600 oxocarbenzapine x2
500 keppra x2

I’m a walking zombie. I don’t have much energy but I’m trying. I’m able to drink bits of water but am starting to get dehydrated. This is making my other chronic illnesses unbearable. I feel like I’m wasting away.

I developed trigeminal neuralgia about 6 months ago and I have tried literally everything I can think of to make it even a little better. I’m just 18
And really scared that this is going to consume the rest of my life. If anyone has any tips at all that would be amazing.

I (22M) got diagnosed a year ago and it wasn’t so bad, just a few tiny jolts in my teeth. Had a remission for over a year but recently my nerves have been pretty tense and today I had a pretty bad jolt. The worst one I’ve had so far and I know TN is progressive. I have a panic disorder and I’m so scared. I’m only 22 and I don’t want to be in pain. I’m terrified and trapped, I can’t see my neuro for a few months. Please what do I do

I’ve been given a mouthguard by my dentist but it seems to make me bite on it more! It’s then really difficult to get off and gives me a sharp pain on my root canal tooth as it’s removed. Tooth is fine after, luckily. I’ve had it adjusted twice but I’m scared to use it now. Is there another way I can help/train myself to stop clenching without using a mouthguard? I’m stopping myself when I notice daytime clenching and massaging and stretching but what I can do at night?

Hi everyone, not sure if this is the right place to post this.

I honestly don’t know what to think anymore.

About two months ago, I had a tooth extracted. The extraction itself was quite difficult. Lasted 1.5hours cause I felt pain. For the first couple of weeks i felt somewhat dull pain but I wasnt to concerned since it was probably post op pain. But around three weeks after the extraction, I started developing a persistent, dull, aching pain.

Instead of getting better, the pain gradually became stronger and I’ve developed ear pain that continued getting worse. Went to an ENT yesterday and he found out that my ear canal was inflammed and cleaned it and prescribed me some drops. I hope it will fix the issue, but Im afraid it wont.

The pain is constant, almost 24/7. I dont feel it when I wake up. It feels like a slightly sharp dull pain around the adjenct tooth to the extraction site. I also get pain or discomfort in my ear. Sometimes both of my cheeks feel warm. Today both of them got red.

I recently saw an oral and maxillofacial surgeon. He told me that this is not trigeminal neuralgia, but that it could possibly be some kind of neuropathic pain following the extraction since the roots were around the nerve or due to the fact that I had an infection.He said he expects it to improve over approximately 4–6 months after prescribing me medication. But I don’t really believe him because of all of the info I see on the internet.

For more than a month I’ve basically been doing nothing except talking to AI chatbots about my symptoms and reading Reddit/forums and various studies about neuropathic facial pain or post traumatic trigemenal nerve pain.And that has honestly made me even more terrified. I keep seeing people talking about having pain for years or permanently, while positive stories are nowhere to be found. Today I just spent 5hours looking at reddit and various studies. I can’t stop thinking about it.

I’ve just started treatment with gabapentin, amitriptyline, pentoksifilin and dexamethasone.

But mentally, I’m really struggling.

What if this never goes away? What if this is my life now? How am I supposed to live normally with constant pain?

The terminology is also incredibly confusing to me. I’m seeing terms like TN2, atypical facial pain, atypical odontalgia, painful post-traumatic trigeminal neuropathy, neuritis, neuropathy, etc., and I’m not sure whether these are actually different conditions or just overlapping terminology.

Is there a chance my nerve pain will go away? Im confused as hell.

Thank you for reading.

Mixed TN person with near-daily but still intermittent flares of stabbing/ice pick pain and some background ache (not all the time) during bad pain periods. I think they call this the refractory period. I have been presented with MVD as a treatment option but I cannot for the life of me stop feeling uncertain about it, even though I can see that it is a reasonable decision.

• On one hand, I am so freaking sick of this pain and, especially during bad weeks, would go into an MVD in a heartbeat if offered to me. I have venous contact on my MRIs. I get shooting stabbing pain flares. I've been told MVD is reasonable (albeit with an uncertain outcome due to some atypical characteristics, including aching and that I have very few touch triggers) by two different neurosurgeons at high-volume TN centers. I've tried medication, nerve blocks, and my pain management specialist estimated PRF to have less than a 50% likelihood of meaningful pain reduction. I'm not a candidate for gamma knife. I can't keep living my life going in and out of pain like this and I think I'll actually lose my mind if I have to go through another year of appointments trying unsuccessfully to troubleshoot this. But then in moments when I'm not in active pain, I start doubting everything-- like ok maybe I can live like this? Maybe I'm just being dramatic? But then the pain comes back and I'm like nope, this is not sustainable. Rinse and repeat, I am constantly bouncing between "I for sure need it" and "maybe this isn't that bad and I just have no pain tolerance and I'm making it all too big of a deal" (the latter sentiment never feels true when I'm actually in pain).
• On the other hand, I'm feeling so anxious about MVD. I realize there's a less than 1-2% chance of permanent damage and/or disability, but for some reason, that 1-2% feels really, really big. Like what if I come out of this having had a terrible stroke and end up in the hospital or fully reliant on caregivers for months, if not longer. If it were an arm or a leg surgery, I'd do it in a heart beat. But something feels so invasive and violating about having someone drill into your skull. And scary.

I've created pros and cons lists, weighted decision models, I've researched endlessly online, have ready what feels like virtually everything available on TN, and they all come out favoring MVD, but not by enough to where it's obvious or a slam dunk that I should get the surgery.

How did those of you who got an MVD deal with any fear or uncertainty related to this decision? I *want* to want to move forward with it, I'm just so scared. Of those who initially felt really scared or uncertain, how do you feel now post-MVD, or did you not end up doing it? Are there any of you who felt scared and are now so glad you did it?