I have recently started getting nerve movement not pain on my side that is fine. Does that happen to anyone else??

Anyone have a vascular loop that's not compressed? But, it's visible on MRI scan? Did anyone eventually get TN later on from it.

Could my nerves just be damaged and that’s it’s? All this pressure and feeling like one side of my face is more numb, heavy is just nerve damage? Nothing muscular? Nothing out of place obviously, but is it that simple? Do I just treat the nerves now? What if I have a never that is compressed? Who would I go to, to figure that out?

Yes I was punched by a bully. I wish they killed me. Now I’m broke trying to fix my problems on my own because my family doesn’t care and has their own bills. Why is life so unfair, my house isn’t getting blown to bits by a war, yet my body decides to have my suffer in pain till my inevitable death, which one is worse, instant death or being teased throughout a long life seeing everyone life the one you couldn’t

TLDR: I am pain, I have the depression adhd combo with a combination of physical illnesses that just make my life so much more tedious,miserable painful and disabling. I am hoping discontinuing bupropion will give my life back, but there is just so much crap wrong with me, sometimes I want to die, but I just don’t want to miss out on what could be in this shitty life. My parents also don’t support me mentally, and do not care about my physical health.

I am 20 years old, I’m a college student and part time worker. I do well in school, and have done well my whole life, but my adhd and depression have caught up to me and I’ve been treating myself as bedridden and playing video games all year. I had my first trigeminal flare maybe around 2-3 years ago, I know I had some pain last year as well. I have always thought of it as ear pain, jaw pain, or pain caused by tonsil stones, or even acid reflux.

I have it on the left side of my face, radiating from in front of my ear where you can find a perpetually swollen lymph node. It’s never been as bad as it’s been this past two weeks, I’ve honestly never really remembered I had it. I have the occasional eye pressure in my left eye, and overall pressure in my jaw as it’s never as loose as the right side, but there was no pain. I haven’t had pain in probably a year, but over the past few months the eye pressure has just been building and outta nowhere, it’s like my face and head cracked, and my own body started gripping the left side of my face and head. Leaving me with a massive headache, Tylenol didn’t work, ibuprofen worked slightly, but for 600mg and making my heart flutter all day, I’d rather not increase that dosage.

It sucks, I am in pain, and I cannot do shit, I can’t even play video games. My diet, has only improved. I’m drinking water, I’m getting my vitamins in, looking into taking ones that help nerve pain too but I’m too broke to get any.

To cut to my personal life, and the real part of this post. I am

Depressed I have adhd (hard to focus) Overweight (after losing weight again) from depression and low will power Sleep deprived (2 days straight with a good sleep schedule, today I’m back to staying up till 1 or later so today is a failed day) In a current college semester Losing thousands of dollars worth of part time work with $6 in my account

I used my last 20 to buy a schedule book so I don’t sit in my room all day doing nothing or forgetting to do what’s important.

I am not working out I am not socializing and networking, making friends and expanding my circle I am not making money and saving up for the future I am not living. I am inside all day, suffering

I recently did an H.pylori treatment with intense antibiotics, recovering from the the H.P AND the antibiotics and I don’t even know if I’ve gotten rid of it yet.

I have a bone spur in the front of my foot between where my ankle meets the flat part of my foot, there are likely cracks throughout the sole of my foot as well

I am balding I have acid reflux affecting my LES giving me LPR, so one side of my face has nerve pain and the other side has my neck and throat muscles tightened and malfunctioning so I can’t breathe well sometimes and food and water makes me choke sometimes as well. We have not determined whether or not low or high stomach acid is causing it, because we have to treat the bacteria first.

I am a drained zombie, void of life, I scare my cousins and family members in the rare chance they see me, but out in public I put on the nonchalant face and mind my my business.

I am thankful my therapy is free, I have just started but I will likely end up dying from pills or taking my own life. I cannot afford these treatments and I will end up with debt for decades. Yes I have insurance, but I can’t even pay my co pay for my yearly optical. I’m selling all my clothes and shoes, and there is $6 in my account.

If I speak to my father He will laugh, and lie about wanting to help and never will, he will use it against me for something simple like forgetting to take out the trash, to make me feel bad about myself

My mom is the same, but instead she will tell me I’m a whiny girl and ignore me. She ignored me many times when I told her I was suicidal. She instead pushed the load into my neighbors and forced them to talk to me instead. I had to beg her to get me a therapist for months, slowly ticking down the time till I took my life.

What I am hopeful for, is that the bupropion I am prescribed is what caused my flare this week, and stopping it for the next 100 hours will bring me some relief. It’s been about 48 since I stopped. I am still in pain.

I am a glorified disabled person at this point. I can walk and talk coherently, but I want to fall to the ground all day and let whatever is willing run over me.

I assume this is normal but just making sure I’m not weird. Is there like a weight limit for glasses we can wear with TN? I can’t do contacts. But glasses hurt so bad. Any advice?

This is very odd and kinda scares me more than a longer flare up

Unfortunately for me I have been diagnosed with trigeminal neuralgia, as well as peripheral neuralgia in my left arm (it's practically useless), my left shoulder blade area and my right foot. All day long I feel a nerve pain that spreads through my body, sometimes it's a dull ache, other times it drives me crazy, my new doctor is trying very hard to give me the treatment that is currently available for neuralgia although the pain goes from a 6 to a 4. My real problem comes when the trigeminal nerve is activated, I feel such pain as if billions of needles were piercing the right side of my face and spreading through my mouth, my temples explode, my nose bleeds, I bite myself because my jaw is so tense that I can't even open it and I just clench and clench. It's driving me crazy and I don't know how to stop it from affecting me more psychologically. (I'm seeing a psychologist and a psychiatrist, but it's hard to make them understand that what drives me crazy is the pain and that no matter how many drugs they give me, they don't change my reality.)

Hi all! I'm new to this group and I'm confused as to what more to do. I'm currently sitting at a diagnosis of atypical facial pain. It's been explained to me it's likely stress or some sort of emotional turmoil but my neurologist also threw in there that it could be micro tears in a nerve somewhere not picked up on an MRI.

Backstory: February 2024 I had a filling on my last tooth on my upper right side filled. Close to the gum line. Things of note, when getting the numbing agent it was put more in my cheek the first time and I didn't really notice and the 1st go around for filling the cavity was horrible and then we realized I need numbing in the right spot so I got another dose plus she said a "little extra" at the time I didn't ask because it was just a standard filling so it was supposed to be. I was good for a little less then a month. I swear everything came off that back tooth. To this day I still feel the raised edges of the filling. So by the mid to end of March I went back to my destist three times. I was put on antibiotics (Zpak) for possible sinus infection, then a medrol pack for inflammation, and then muscle relaxers. None of that changed anything.

Also to be noted, at the time of my filling I also got a night guard made. It's a bottom one for night grinding they said I had evidence of that so I paid the price for a professional one.

Main Symptoms: zapping teeth, originally felt like it was just the upper right side then it became all my teeth. It's like chewing on metal. Cold and hot drinks set it off worse even breathing air through my mouth. This causes my whole jaw to ache. Occasionally my ears feel full. I get full on headaches with my vision being affected like I can't focus right. And I'll get shocks running upy face but they are random. Heat on my face seems to escalate things. I also get what I call a chinstrap feeling, it's like someone put a helmet on me and tightened the hell out of the chinstrap. I feel like I'm walking around like a bobble head of pain. Occasionally creepy crawly feelings on top and back on my head.

So eventually my dentist threw their hands up after all my X-rays were normal and it was a muscle problem and go to my primary for therapy. I went to my primary and told her what was going on while trying to not jiggle my legs due to pain and trying not to cry. I was a mess. She said it sounded like a nerve issue and put the referrals in for neurology and I asked for one for the therapist just in case it was just me grinding to hard. In the meantime I also pressured my dentist to see a endodontist, which I got the referral for that and I was hopeful that a root canal of that tooth would solve all my problems.

In the meantime my primary put me on 100mg gabapentin which later was bumped to 400mg a day. I saw the endodontist and paid for the scan needed only to be told my teeth are good and to not be forced into going to the ENT because my sinuses were fantastic and clear. Hope died. So then I got to neurology which could only be done through video call. Meds stayed the same and an MRI was ordered to mostly focus around my TN nerve. Everything came back normal. Another video call and my gabapentin was bumped to 900mg and coupled with bacoflen at night.

That's were I'm at. I asked my neurologist if I should be weird about MS or anything like MS. He said there's no indication of any of that and not to worry. So far the upping of the gabapentin keeps a lot of things in check at least it's mostly tolerable but I'm still not where I wanna be. My neurologist said this good heal itself, is that true? Is this all in my head? I've quit my meds twice and within two to three days everything comes back full force and I got back on meds. Am I making myself sick? My husband's it's real pain but the word stress gets thrown around with the impression I need to relax but I don't feel stressed other than all this now. Anyone else going through similar things? What is your approach?

So about a month ago I got covid, which wasn't serious, and I was able to move around, it was more just my stomach felt off and I had a bad cold. About a week after it cleared, I still had a cough and my nose wasn't 100% unblocked, but it was getting there, I started getting pain in my right upper tooth, somewhere along the middle or the back. It wasn't serious, but occasionally happened when I ate on that side or bit down on it, however I kept eating on that side and it would only happen about once a day.

About a week later it got worse, and I couldn't eat on the right side. Then one day, I had really sharp, horrible, 7/10 type stabbing pains throughout the entire day, even when I put my tounge on that side. I couldn't eat or talk for the entire day, and later that day I saw a dentist who classed it as an emergency. They prodded/jabbed at my teeth, which didn't cause any pain, and they took an x-ray, and eventually said there was nothing wrong, however my teeth were very close to my sinuses, which may still be blocked from covid, resulting in some nerve irritation.

They gave me a nasal spray to use for a couple of days, and I got some paracetamol to try and lessen the pain. Almost immediately after I took the nasal spray, the pain cleared up, and within the next couple days, I was pretty much back to normal; I could finally eat on that side. However, the pain started to come back, even when I was on the nasal spray, so I stopped taking it, thinking it was reversing the effects. This actually helped, and pretty much stopped the pain, however I didn't want to eat on that side as I could still feel it get sensitive when I bit down, or had a cold drink with ice.

I went to the doctors a couple days later and they said it WASN'T a sinus issue, which confused me even more. I thought "so do I just have to live with this pain now?" So now it's at a mild pain whenever I eat, usually happening about 3 times per meal, and about 5 times throughout the day. However, I came to this subreddit as 30 minutes ago I suddenly had a violent stabbing pain randomly, similar to the ones I felt the day I went to the dentist, and lasted about 15 seconds before disappearing, leaving me with pain only when i bite down.

I seem to have some of the same symptoms of mild Trigeminal Neuralgia, but I'm not sure if it 100% is, as my teeth are completely fine, no issues whatsoever, and I don't feel pain when tapping or prodding the tooth.

What do I do/what do you think it is? I've been pretty depressed about this, and I just want to live my life normally again.

UPD: I found it the tooth that's causing the zapping pain; it's the 1st biscupid (1st premolar)

Hi! I'm searching for a headband I can wear that won't put a huge amount of pressure or be too tight. I've had cyber knife treatment and that has helped my flares immensely but I also have atypical TN- I don't get the debilitating flares but I get the achy deep pain. Any suggestions for a headband that might work for me?

I experience weird feeling of sudden pain on my mouth palate to my eye the pain is like there's is a string or nerves that causing pain, ist it neuralgia?

Feels good to finally have clarity on what exactly was going on here. Will do MVD on the right side first as it is way worse. Fingers crossed it works. Also, everybody please make sure to push for a Tesla 3.0 MRI with FIESTA. The initial MRI that was ordered for me was incorrect as it was ordered by an ENT and didn’t show anything.

Have any one had a good experience with vitamins and supplements that helps?? If so which ones?

Hello all! I am an avid reddit user and love to come to get answers from the people that know it all and have experienced more than the salaried employees that sadly control many of our loved ones lives!

Long story short my grandma is 73 as of 2024, and she has been diagnosed with trigeminal neuralgia for the past 5-10 years to my young adult brain. But most recently she had a flare up that started about a month ago which has put her into daze from pain control with medications.

Prior to this flare up she lost her husband 9 months ago, and about three months ago filled that void with a Boston terrier puppy! Last month she was bass fishing on a boat with me getting on and off the boat alone with ease. Even had plans for a trip to Europe planned and paid for in the beginning of December which is now not happening. I'm explaining this to describe the life style of a very independent recently widowed adventurous older lady.

Now back in time to a month ago when she had a flare up that started over a week, finally getting to the point of going to the ER. Where she was admitted and treated and discharged to home with slight improvements in pain and more medications. Less than a week later she returned due to the pain. She semi refused to be discharged until they had a better grasp on her medication or future procedures. While at hospital she was high on pain meds and sedatives to relieve the pain, go figure it makes her very drowsy and now walking with a walker. After being there for a couple days, she was discharged to a long term rehab with plans of seeing a neurosurgeon at a nearby hospital two weeks away. All the while she has been withering away due to being inactive and pain being bad at times where she can't/won't eat. After being in shock at how horrible the first rehab clinic, she was transferred to a much better one. Where she was for three-ish days and seemed to be under control with PO oxycodone and still getting around with a walker at a snails pace. Soon after being there she went slightly unresponsive with a syncopole episode and low and behold a low sodium level may have been the culprit, but she was transported to the nearest hospital for precaution. Which is funny that oxcarbazepine commonly lowers sodium but no one in the hospital was able to say that until we found out when she was finally discharged and we picked up her prescriptions which says that as the first side effect!!

Skip to here for the big question! She is now at home with my mother who is very underprepared and inexperienced to be giving such care. So we are helping her to the bathroom and she is sleeping in a hospital bed in the living room, which feels awfully like hospice for a person who was just chasing around her new puppy and fishing a month ago!!

She is heavily sedated and drowsy, and at times hallucinating. But overall not in pain and semi easy to take care of but requires observation at all times.

Throughout this entire adventure she has been tossed around on medications daily, so we wake to meet a new grandma each and every day, and it changes throughout the day.

We believe her ever so changing self is due to the medications.

As of now she is on oxcarbazepine 300mg x2 a day, gabapentin 300mg daily, gabapentin 400mg at night daily, nabumetone 300mg 3x a day daily 8am,12pm,8pm, vimpat 200mg x2 a day, cymbalta(depression from recent flare up) 20mg daily. And lidocaine patches

Her neurosurgeon appointment is in three days and the doctors are nooo help. Which is so sad to see this view of the healthcare system.

I'd love any and all recommendations and advice!!!

I thank you and love you all, for dealing with such a horrible disease!

Hi, I am having flare ups right now even tho I am on tripetal/baclofen. I was eating pretty bad recently and I think that was why. I do have an appointment in 1.5 weeks for radiotherapy but what are some home remedies that help you guys when having flare ups?? I need something in the meantime

Hey guys I remember one time I was prescribed an XR drug before it made no difference.

I have an appointment on Monday with the clinician at the neurology hospital. However I am dying and in lots of pain.

I can ask my normal doctor who can immediately prescribe an XR Lamitrogine which I believe is a slow release drug.

As I have developed tolerance on the normal one would tye XR make a difference, I can get this afternoon.

Is it worth it?

Is crying a major trigger for anyone or is it in my head? I had a situation and was crying all night last night(Weds) and a lot of today and now I’m in excruciating pain!!

Edit— What medications do you take for the pain, like breakthrough pain I know opioids don’t really work cause it’s nerve pain but what helps you

My intense pressure zapping feeling in my right temple turned into pain with usage of 400mg Pregabalin? Is this normal ? ( the pain is severe )

My GP referred me to an ENT rather than a neurologist, and the country I am in has long waiting lists for ENT (I’ve got an appointment in Feb, was diagnosed and referred a month or so ago) and I was wondering if it’s worth it to push for a neurologist referral?

My neurologist referred me to a neurosurgeon at Medstar Georgetown. I'm considering getting the Gasserian ganglion block.

Hello all! A little bit of background about me. I was diagnosed with Trigeminal Neuralgia last year on my birthday, had an MRI done in April and found that I'm missing my right Meckel's Cave, an extremely rare cause of TN. Currently on 600 mg of Carbamazepine to help.

One thing that I've always wondered about, is if a dog could alert to an oncoming Trigeminal Neuralgia attack. I currently have a multipurpose service dog, who does mostly psychiatric and cardiac tasks. One thing that I have trained her in is scent work for various things, like alerting to a high heart rate, migraine, etc...

To those who don't know how scent training works with service dogs- while the handler is going through a medical episode, they collect their saliva, freeze it, and then let the dog sniff/interact with it. If the person is having a seizure, heart rate spike, migraine, etc... it changes the way the person's saliva/breath smells. The dog is rewarded when it interacts/sniffs the sample. After consistent scent training, the dog is able to sniff out changes in their handler, and can alert to oncoming medical episodes. It's a technique commonly used in seizure alert dogs, cardiac alert dogs, migraine alert dogs, etc...

With that being said, would it be possible for a dog to detect an oncoming TN attack, potentially through scent? Would a TN attack change the way your saliva/breathe smells?

I feel like it would be a MAJOR help to have her alert to an oncoming TN attack, so it wouldn't be out of no where and I would have time to prepare for it.

If anyone has any ideas, I would greatly appreciate it. Thanks!

Today was a terrible day this condition sucks, razer blades in the mouth, cheek bone feeling like it was being pulled off along with feeling like there are cavities in my teeth... I could only eat about 5 bites of dinner before it got too much to eat the motion of food hitting the roof of my mouth triggered it after it had almost calmed down. I really wanted dinner too I made pot roast and mashed potatoes 😭 I even over cooked the roast so it was almost pulled beef

It only hurts on my face not my tooth. I can’t tell if this is the issue or not.

Can anyone recommend a really good neurologist who specialises in TN in the UK and does a private clinic? Ideally in the Midlands/North West (Stoke/Macclesfield/Manchester/Derby etc… but if not then London. Got BUPA healthcare.

Thanks if anyone can help.

I’ve got a horrible toothache that I was diagnosed with trigeminal neuralgia but I have an impacted wisdom tooth that I should have already gotten out but because cost and neurologist said that wasn’t the issue I’ve put it off. I’m supposed to get it taken out next Friday but I’ve dealt with severe pain for months but I’ve been using Orajel for probably a week and it helps. I use it about 45 times a day. It says not to use it more than four times a day for no more than four or five days. It’s the only thing that really helps now I’m afraid if I use it for the next two weeks it’s gonna cause more issues now. Has anyone used it for long periods of time like two or three weeks and it caused issues?

I made the journey half way across the country to finally see a neurosurgeon at Mayo Clinic! Maybe some of you have heard or seen Dr. Zimmerman before?

Anyways I have all sorts of feelings about my appointment tomorrow, however, I’m wondering if anyone has any advice on how to go about this consultation? Maybe certain questions I should ask him especially related to surgery/procedures?

Thanks for any responses… I’m really nervous for my appointment so I appreciate any feedback.

I had a MVD on the left side in February. I'm still experiencing pain in the left side of my face(jaw) and the my tongue on the same side. It's also numb on that side that goes all the way back to the incision on the left side. The incision hasn't healed either. Has anyone experienced this from the MVD?

Has anyone heard of the herpes virus causing this? I have had two flare ups in the past 6 months that I thought were shingles without the rash. I was told by my doctor yesterday that it’s TN. he prescribed antivirals and a steroid and said that it’s likely caused by the herpes virus due to my monthly cold sore outbreaks. Is this even accurate bc I can’t find any info online about this being viral. I do have flu like symptoms with both flare ups.