Why does it have to effect us so badly and make us so scared ...the pain feels like my brain not my face...I'm at work and have to pull myself together 😪 so sad and scared

Does this mean they can’t see anything wrong and MVD is possibly canceled? Always thinking worst case here sorry ladies and gents.

hi all- i've posted in here before about carbamazepine. it finally started working for pain but the higher the dose the more i'm sensitive to the sun. even with spf, partial shade i break up in hives all over my body. my neuro refuses to get me off the meds so i made the decision myself to wean myself down to a dose that makes the pain tolerable while i can still be outside. i don't want to insult my doctor, i get it. i was in pain, this drug fixed it. he wants me on a much higher dose than even the vampire dose. i just feel exhausted. he won't mention any other medication. i'm even taking myself down from my gabapentin dose because at 1800mg it never touched my pain until we added the carbamazepine.

how do you all advocate for yourself with your doctors? this isn't a way to live. i also don't want to insult anyone here who has not had relief from medicine. i am so thankful something has started working but i still have painful days no matter what i'm on. it's just less painful and i've had many pain free days. i have a dog i have to walk, i live alone. i can't wear a hazmat suit walking to my car. this isn't a life.

I have numbness, tingling and pain in my jaw. Spreads to both sides. Face goes numb. Almsot like spasms of the facial muscles. Could this be TN, also wondering if it’s my wisdom teeth or tmj? Not sure at this point. Symptoms are all over.

Hello . Ive had a case of oral thrush that wont go away from steriods ive took from this stupid flare im in . Ive tried the mouthwash and many other things to avoid mixing these two meds . I know flucan counteracts the carb and can cause alot of issues . Has anyone dealt with this ?. Im at the point now i have to take the flucan . My neuro said just stop taking the carb for a few days. Seems unsafe to me . Ive read abruptly stopping carb can cause seizures . Also i dont wanna deal with the shocks from stopping . Im on a high dose of carb too . 1200 mg . And my regular doctor doesnt know what to do . The pharmacy told me mixing the both would be really bad i guess the flucan makes the carb act alot higher and u can get very ill passing out or throwing up .i told them my neuro said to just not take the carb for a few days and they said thats not a good idea either. Im at a loss what to do . Has anyone dealt with this before ?. How did it go for you ?

Hi all,

Starting about Feb 2024 I was having constant pain to the left of my nostril, it felt like it was above my teeth. Went to the dentist, X-rays showed nothing and teeth were given the all clear. He recommended going to the doctor and suggested I ask about TN.

Doctor immediately prescribed carbamazepine and said if it reduces the pain then that’s the diagnosis. No further tests, didn’t take bloods, nothing..

I tried the medicine for 3 weeks and it did significantly help with the pain, it didn’t take it away altogether, but the doctor is optimistic that increasing the dose will.

When I went back to the doctor, on account of the carbamazepine working he gave a formal diagnosis of TN type 2 and upon my request ran bloods - everything was fine bar hopelessly low Vitamin D levels. ( I live in Scotland 😂)

My concern is the carbamazepine comes with a lot of side effects, I’m clumsy and confused almost constantly. Should my doctor have done any more to confirm this diagnosis, or is this normal?

To add, I don’t think I have ever had TN 1 type pain as from the way I’ve seen it described by sufferers on here I reckon I’d know if I had.

Trigeminal neuralgia type 2

Hello Image that I posted a couple of hours ago are the results of my mri. I have been suffering from tn since December 2022. I used to feel a twitch behind my left ear and burning and pinching sensations all over the left side of my face and later on it moved to the right side of my face as well and many times it hurts on both sides at the same time. Even though I have a vascular compression on my left side but my symptoms are bilateral. Has anyone faced the similar symptoms? Also I am on meds right now and it's not working out for me. My beard triggers the situation and when I get a clean shave it feels much better. Also my doc told me you could undergo a non invasive surgery which is zap-x. Does anyone here has a clue what is it ?

Scheduled my microvascular decompression and I’m both scared and hopeful. Any tips?

Hello! I seem to have some sort of secondary cause of trigeminal neurologia. (I am under the active care of a neurologist). *I have taken a round of acyclovir *I have seen two dentists to rule out dental or TMJ influence

*I am taking gabapentin and carbamazepine, but experience significant, debilitating breakthrough pain periods. My pain flares last for 30-60 minutes. The only guaranteed method to eliminate my pain is alcohol (whiskey has become my preferred choice. It's not a choice I can reach for often, because kids, job, driving, etc.) My pain also sometimes manifests behind my jaw/under ear, under jaw into throat, in front of throat (feels like I got punched in the throat, which makes me want to say "you should see the other guy" except he got me and ran 😫🤣😭) truly the way I describe my pain is "got hit in the face with a 2x4".

Anyhow, having been on the 200mg carbamezapine one week, and gabapentin (up to 1800mg) 2 weeks, I'm feeling like if this was a primary TM situation that those should be working. Carbamazepine interacts with so many other meds I'm afraid to play around (with anything beyond whiskey). I have a call into my neurologist office, but they are closed Fridays and it takes some time to get back, but I'm wondering from a patient standpoint how many of you have dealt with TN pain that has a different primary source?

I have been experiencing symptoms of TN (both 1 and 2 I think, but mostly 2) for around 2 months. I also have a lot of dental issues that need attention.

This past few days when I floss, I’m in getting sharp pain between 2 teeth. It doesn’t cause a flare, or set off a chain reaction, but it’s a really acute sharp pain as I move the floss, as if I’m literally rubbing it against an exposed nerve?

It’s only in between 2 teeth so it’s in one spot. Related or just my dental issues?

So , I don't know what to do...I don't open or move the right side of my face or mouth very much to avoid causing any zaps or flare ups but I have a bad tooth on that side 🤦‍♀️and it aches and bothers me a lot and I have to put Oragel on it a lot to get some relief ...how in the world do u get this taken care of by a dentist ?? ..is it even safe to get a tooth pulled with TN? ..I'm terrified of the thought of having my mouth opened that wide and stretched around by the dentist.. so like what do I do? ..I feel like it will cause a major flare up to move my mouth and face like that...I guess I just suffer with the aching tooth? ..I mean, if that's what I gotta do that sounds better than causing my TN to flare up...any one just let a tooth rot out of their head because the thought of opening ur mouth for a dentist gives u a panic attack? .

Hi everyone

I have never posted before but have read lots of posts on TN since being diagnosed which have been really helpful to me. I thought I would give it a go given recent developments and see if anyone has any insight - TIA

Nov 23 I had two wisdom teeth surgically removed on the right side - I had numbness in the area until Feb 24. At the start of March I started with TN symptoms - horrific electric pain across my face and scalp from the back of my right ear. To the point I couldn’t even put my hair in a bobble as the tension was unbearable. At the same time a constant headache started.

Same my GP (well a locum) who prescribed 200mg a day of carbamazepine- over subsequent visits this has been titrated to 800mg a day. The electric pains are not as bad now, it is dull and worse when I’m tired etc but manageable. Headache is still there though and is horrendous.

Lots of issues with my GP eg did not tell me the carbamazepine would stop my contraceptive pill from working etc but that’s not the central issues.

A couple of weeks ago she said I needed and MRI to rule out a tumour - had one last week and surprisingly the results were back in a week (they’d said 4-6 weeks)

No tumour thankfully however, it looks like there’s demyelination of some nerves in my brain and she said this could point to MS so need to be referred to neurologist.

Since the pain started and even before with some things - I’ve had a range of symptoms but now I don’t know how to tell if they are symptoms or they are side effects of the carbamazepine.

Symptoms/sideeffects

Constant UTI (this has been going on for about 18 months) Clumsy - since birth but has got worse in terms of dropping things, walking into things, burning myself cooking etc

Since the pain/medication Slight blurring to the vision in one eye Constantly upset (that could well be because I’m fed up of the pain) So tired - to the point I’m having to have a nap in the day which I’ve never done Forgetting words - I’m a teacher so you can imagine this has been a real problem

Sorry for the long read

Hi all. SO. I've been on carbamazepine for a month. I'm on 300mg twice a day. It's working for me- I've had many pain free days on 300mg. I've been on the increased dose for maybe 1.5 weeks now. Today I sat in the sun for 10 minutes without sunscreen and WOOOOOW was my skin burning. I had a rash all over my arms, back, neck and chest. My skin was on fire. I called my doctor and took benadryl and asked if I should get off carbazempine but he said that it's rare but it can make people sensitive to sunlight. And on this new dose it probably made me more sensitive. Since it's working he refuses to take me off of it and told me to stay out of direct sunlight for now. LOLWHAT. I don't know what's worse, crippling pain from TN or not being able to be in the sun when it's finally nice in Washington. It's not SJS. The rash went away once I took benadryl. I feel fine now.

I'm wondering if anyone of you have had this reaction, if so does sunscreen help? I asked my doctor and he said maybe. Lol. Sweet thanks for help dude! Uhg I swear these doctors.. lol

Hope you all are well<3. It's so nice to have a community because literally no one in my life gets it.

Hello friends. I'm in need of venting to people who understand this pain. I have tn on my right side and have had it for about 15 years. I've gotten pretty used to having constant pain (also have fibromyalgia) On tuesday, I got dx with oral shingles on my left side It's my second time with shingles, first time on the scalp on my tn side. If you didn't know, shingles virus can lay dormant in your trigeminal nerve. Shingles outbreaks often causes (temporary for the most part) trigeminal pain.

I have so, so, so much pain in both sides of my face now. I think the infection itself has pissed off my right side and the shingles is way in the back of my mouth, near my throat and where your wisdom teeth grow. I swear it feels like it's ON my nerve.

This pain on my left side is really scaring me as I'm afraid it'll become a new normal for me. I don't know what I'd do if I end up with bilateral TN. Most likely that won't happen and I just need to heal but it's hard to not jump to worse case scenarios.

I started the antiviral on Wednesday. Last time I had it, I started feeling much improvement by day 2 of the antiviral. I take the antiviral 5x a day + 50mg prednisone. The pain level is so severe still, I'm worried. I just needed to vent. I don't know if I should call my doctor, I don't know if I should just keep resting and give the antiviral more time to work. I know my anxieties are only stressing my body and mind out more but I can't help it. What would you do, if you were me? Any support so appreciated <3

I've been diagnosed for about a year, I have tooth , ear , head and neck pains, but suddenly I have gum pain. It feels like it's ripping and hurts to touch, along with the other symptoms intermittently. Has anyone experienced this type of symptom? I'm booking an dentist appointment tomorrow morning, because,you never know, but the anxiety about it is causing me to ask here.

I’ve had two episodes in the past month of severe pain that comes in waves and is excruciating when it happens. It will last a few minutes and then go away, but will return randomly later. It is truly the worst pain I’ve ever had, and I went to the dentist who said maybe my tooth but nothing really wrong with it. Went to my primary care who said it sounds like trigeminal neuralgia and ordered an MRI. Th e results are below but I feel like they’re not really diagnosing it as trigeminal neuralgia. However, the pain is so consistent with it I can’t see how it could be anything else. Any advice or thoughts on the MRI results? Everything else was normal.

Impression

1. Approximately 3 mm anterior to the root entry zone of the left trigeminal nerve I vessel passes along the lateral aspect of the nerve and possibly minimally indents it. This is non-specific, but could contribute to trigeminal neuralgia.

FINDINGS: BASAL CISTERNS/IAC: Approximately 3 mm anterior to the root entry zone of the left trigeminal nerve, a vessel closely abuts and possibly minimally distorts the lateral aspect of the left trigeminal nerve (Series 701, Image 80).

I was recently diagnosed with trigeminal neuralgia after an unsuccessful root canal. I still need to get a crown as follow up for the root canal but now I'm terrified to go back to the dentist. Does anyone have a recommendation of a dentist in New York City that is sensitive to treating someone with TN?

My sister just ordered Ambroxol capsules. She wants to make the cream. Has anyone here tried that? If so, has it helped? Any input on making the cream would be greatly appreciated! Everyone here is so kind even though you all are going through pain. I am so thankful for this community! Wish I could help you all somehow.

I was given the TN diagnosis 2 years ago. The pain started out as a soreness/ache in my upper left inner cheek and in the gums just above the last 3 upper teeth on the left side. About a week of the soreness and then once a day a wave of pain hit. The pain wave started in my upper left cheek area and bloomed up and down the left side of my face and head. Thankfully if I took a sip of ice water and directed it towards my inner left cheek, the wave of pain was instantly stopped. When the pain wave hit and I tried holding off on taking a sip of ice water, the pain was so intense- 20 on a scale of 1 to 10. The pain felt like the pain from a dry socket but 10 times worse. The pain wave hit me once a day for about a week and then starting to hit me every couple of mins. I went to a dentist first to make sure it was not a tooth/gum problem. Then I went to the ER and after a scan and the fact that fentanyl didn't help the pain, I was given the TN diagnosis and a neurologist referral. The MRI showed no indication of the case and the twice daily oxcarbazepine pills have kept the main nerve pain away. I still have mild soreness/ achy pain in the upper and lower branches of the nerve every day since it started. I am thankful the pills are working and so glad the ice water helped me when that main nerve pain hit. I live in fear every day that the main nerve pain will hit me again. I worry that one day, my pills will not work, I worry about the pain hitting me while driving. The only thing that helped me when the main pain hit was the ice water and hydrocodone but the hydrocode can take 20 mins to work. I only survive by trying to not think about TN at all and by holding onto hope that the cause of my TN can be found or will go away. On my next doc appt, we are doing another MRI.

I have read that stress/mental illness can cause TN and these have been the worst 4 years of my life, the TN hit me shortly after my mother was diagnosed with cancer. so that could be a factor. I also read that sinus problems can cause TN and I had developed sinus issues back in nov of 2019. MS can be a cause as well and my grandmother had MS although the doctor said so far the blood work and first MRI showed no signs of it.I just turned 47 and sometimes MS is not diagnosed until a person is in their 50s. I recently found out that the last tooth on the upper left side of my mouth was infected. I had a root canal done. The infection from the tooth had reached my sinuses and could have been there a while but since i already had a crown on that tooth, i had no signs anything was wrong. So now that the tooth is taken care of, maybe just maybe that at least was a factor for the TN. Every case is different and I feel so bad for others who have triggers and have pain that feels like electrical shocks in their face or people who have the pain and nothing seems to help. No one deserves this burden in life. I just encourage everyone to explore every possible cause if none are initially found. Thanks for letting me share my TN story. Stay strong my fellow TN warriors.

About 16 years ago, I had MVD surgery that removed two intertwined blood vessels from my trigeminal nerve. My pain went away for about 10 years before returning. I was nervous about taking Tegretol so I tried Natural supplements. They helped. My routine consisted of, fish oil, curcumin, b-12 sublingual, elderberry sublingual, all taken with 6 ozs of whole milk.

I have 6 episodes to complete dissipate within a week by taking the supplements.

This time my episodes are back and with VENGEANCE ! The supplements are helping but not as much this time around. Is there something I can add to my routine that could help me ?

I also have two spinal injuries and bad trauma, a lot of it is medical trauma. Who can I turn to?

I can't do this anymore and I'm completely alone.

I have been on carbamazepine for over 3 months and 1200mg (600mg twice a day) for over 2 months. The difference between December and now has been amazing. I was reading a thread on here about different things that have worked for different people and I think that taking Lion's Mane supplements in addition to my carbamazepine is what pushed me over the edge. The supplement is Nutri Organic Lions Mane Supplement Capsules - 1900 mg, 10:1 Dual Extraction, 120 Count. It's about $22 on Amazon.

Before I started taking it I would still have "bad" days where sometimes I couldn't talk or couldn't eat without triggering some kind of pain. I have been taking the supplements for around 3 weeks and I've had mostly good days for the last 2 weeks. I get pain at random times for a split second, but I'd say I'm 99% normal. My teeth triggers are gone. I still automatically brace myself when doing certain activities, but slowly I'm starting to let that go. I ate corn on the cobb over the weekend without issue. I brushed my teeth with my electric toothbrush. Sometimes I almost forget to take my medicine because things are that much better.

Maybe it's the supplement combo with the medicine. Maybe it's just going away. I'm just happy to feel almost normal. I wish all of you hope and good luck.

I'm going to see a new neurosurgeon about MVD for trigeminal neuralgia and I just want to be more informed. This means the bloodbessles are touching or next to the nerves right?

I’m curious, When did TN start, or when were you diagnosed?

Edit 1: I want to say Thank You to all who have placed their votes. The poll will remain open for 5 more days.

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I went to see my neurologist today to discuss my MRI/MRA results, which I had gotten done a few weeks ago to see if there was in abnormalities associated with my Trigeminal Neuralgia.

Apparently I have a VERY rare case that's causing my Trigeminal Neuralgia. I'm straight up missing something in my brain, my right Meckel's Cave. My neurologist said this has been reported in only around 12 people since 2021, I believe. I am in absolute shock.

Here are my MRI/MRA results below. If anyone could give me further insight on these findings/what they mean, that would be awesome! Thanks!

--

• MRI results:

MRI of the brain with and without gadolinium enhancement, noncontrast time-of-flight MRA of the brain; 22nd of April 2024

History: -Headaches, cluster/trigeminal -Right-sided facial neuralgia

Technique:

-MRI:

-- Multiplanar, multisequence images of the brain obtained with and without gadolinium enhancement -

-- Contrast: 15 cc of ProHance

-MRA:

-- Noncontrast 3-D time-of-flight MRA images of the brain

Comparison: None currently available

FINDINGS:

MRI:

1- There is right-sided absence of Meckel's cave, a rare entity associated with acquired ipsilateral cranial nerve V atrophy and trigeminal neuralgia. The cisternal segment of the right cranial nerve V is mildly to moderately atrophic as compared to the contralateral side.

2- There are no discernible abnormalities along the left cranial nerve V including along the cisternal segment and Meckel's cave.

3- There is a punctate highly nonspecific gliotic focus within the upper ventral aspect of the right corona radiata. In the absence of subsequent development of similar findings in other locations, this is presumably of no current or future significance.

4- There is no compelling MRI evidence of masses, edema, infarction, hemorrhage, extra-axial fluid collections, midline or other congenital/developmental abnormality, myelination abnormality, volume loss, hydrocephalus, ventricular entrapment, herniation, or unexpected enhancement. The major vascular structures are grossly unremarkable.

5- The paranasal sinuses, middle tympanic cavities, and mastoid air cells are well-aerated.

--

• MRA results:

MRA:

6- Circle of Willis --

-Right A1 -- patent

-Left A1 -- patent

-Anterior communicating (ACOM) -- patent

-Right posterior communicating (PCOM) -- diminutive or absent

-Left PCOM -- patent, somewhat diminutive

-Right P1 -- patent

-Left P1 -- patent

7- The major intracranial arteries are otherwise normal in course and caliber without evidence of stenoses (NASCET criteria), thrombi, or aneurysms.

IMPRESSION:

1. See above regarding the absence of right-sided Meckel's Cave and associations thereof (1st paragraph)
2. Both studies otherwise unremarkable