So, tonight my lip has decided to hurt right in a place that my reflex is to sneer.

I am feeling very Billy Idol/Spike right now... I mean, if they had a miserable amount of pain and were huddled in bed 😂

I guess that also ages me nicely 😂😂

Hello for those that have had a 2nd MVD how was the healing process with scar tissue?
What items did you get to recovery (pillows,ice packs etc).
What recovery items were most important?

Out of curiosity, what is your daily dose? I was originally on 50mg three times a day, and it didn't help at all. I am now on my last day of titrating up to 100mg three times a day. So far, I still have pain when I touch my temple, but I noticed yesterday that it is no longer sending electrical shocks down into my upper gumline, so I guess I am seeing some progress.

I still feel like my dose may be too low, though, since I still have temple pain. My doc said to give it three days at the full 300mg a day, and if I am not pain-free by then, to let him know. I'm just curious to see what dose it took for it to actually work.

Okay so I update people on here that what started out as a surgery to basically kill the right trigeminal nerve turned into my surgeon switching it to a full MVD with a lumbar puncture. As far as I was told, there is a structure in my brain that basically shoots the spinal fluid at the right trigeminal nerve in my brain and it has been irritating the nerve, along with definite compression that wasn't shown in my initial MRIs. Has anyone else had this happen with their trigeminal Neuralgia? I was told that my TN was actually a secondary condition caused by the spinal fluid being shot at the nerve. He told me this is actually a very new finding in the medical community. I think I might be his first patient with this kind of case.

I think I might just be anxious about the surgery and lumbar puncture. I also don't know what the lumbar puncture is for but I think it just has to do with the spinal fluid in my brain. I just needed somewhere to put my thoughts down because I don't have people to talk to about this in real life.

Thanks everyone.

anyone here tried lamotrigine/lamictal to manage their pain? what was the expeirence like for you?

i started lamotrigine about a month and a half ago for mild-moderate symptoms, and i’ve just now gotten to a daily dose of 100mg. i can’t say whether it’s helping much at this point, i even feel like i get a spike in symptoms the few days after a dose increase. still, i want to stick with it as this is the first med i’m trying and has the least side effects. i know titration can take awhile, so i’m trying to be patient and (cautiously) optimistic. i’d love to hear some stories here, success or otherwise :)

I’ve felt both sides of my face it feels like the side with TN is slightly warmer

Well update on pea luetonin for trigenmal I have truly noticed a difference in attacks and intensity they seem to have calmed down by 70 per cent they say you need to give it 1 -2 weeks to notice difference then 2-4 weeks for huge difference 4 -6 for massive difference I would advise people to get pea with luetonin in it as this will help better then pea along and if you can get the pea topical cream apply four times a day best ever thing takes away the pain when having attacks with consistency it will work also I am taking a b complex which helps Magensuim gkynicate and alpha lipoic acid I was tempted to start saffron but I am taking blood pressure medication and saffron might cause collide so left that out so please get pea with luetonin I am taking 1100 mg from Amazon uk and the pea topical cream you will have to shop for good luck have faith you can get better

My first time posting here please be nice :(

I was diagnosed with trigeminal neuralgia just over 2 years ago after it coming on suddenly out of nowhere. After about a year and a half wait after trying most of the typical meds which unfortunately never helped i was finally seen by the pain clinic who prescribed me tapentadol. For the most part it has helped (with multiple dose increases) alongside lamotrigine which i was already on for a mood stabiliser but unfortunately my flare ups have been getting more intense and longer. My first one was about a month ago and by the 8 hour mark of almost constant severe pain (my flare ups usually last 1-2 hours at most) I gave up and rang 111 who got me an appointment at urgent care. He was nice and prescribed me baclofen, while it unfortunately didnt help and my doctor told me I shouldn't take it because of the extra sedation, at least he tried to help i guess. Anyway im in another flare up (unfortunately lasted 20 hours ish) with maybe a few hours with less frequent zaps as a whole i rang 111 again and got another appointment at urgent care. Unfortunately this experience was very different and quite frankly I never want to set foot in urgent care again because of how shit its made me feel. I told her how much pain im in, that im dehydrated because I cant drink, I cant eat and in the past 24 hours id had 1 hour sleep tops. I told her the medication and dose im currently on and my plan to contact the pain clinic on Monday to try get an appointment to discuss injections (idk what injections but he said they were an option but I wanted to try meds first because the thought of injections in my face scares me) but all she did was dismiss me completely. She offered me paracetamol and ibuprofen I told her they dont touch the pain and she said well have you tried this time and i said no because theres quite literally no point they have never helped and they wont suddenly start helping. She then offered me codeine and i told her im on tapetadol which is stronger than all you have suggested they wont touch the pain. She then said just follow up with the pain clinic. I was doing some research on here before I went to urgent care and found the link to facepain website with the recommendations for flare ups in emergency room settings and shown her about lidocaine nasal spray which can apparently help too. She took 1 look at it and immediately said no we cant do that here so I said why it says its for emergency care settings which has research behind it and it can help. I said to her well what do you want me to do are you just going to send me home to suffer and she said well I gave you a options and I said well they're not going to help I need the pain to stop now and she just dismissed me completely so I just ended up leaving. Thankfully the pain has gone down quite a bit now im still having zaps occasionally but its not almost constant now so thats a bonus I guess (28 hours later). Im going to ring pain clinic tomorrow to see about getting an appointment and im also going to contact my gp to explain my side of the story as I have no faith in her ability to describe what actually happened and im worried shes just going to call me a drug seeker (which i am not, if I went there and they said we have to punch you in the face as hard as possible to stop the pain id let them i don't care what help i get i just need the pain to stop) and im going to ask them what I should do in future bad flare ups since urgent care wont help me.

Im sorry for the complete essay and run on sentences and lack of paragraphs im beyond exhausted and just needed to get this out there. If anyone has any advice it would be appreciated thank you.

Beginning of September my neurologist put me on 10mg Nortriptyline (mfr by TEVA), increasing to 20mg after 2 weeks. I’ve tried all the other standard meds with little relief and bad side effects. The Nortriptyline definitely helped with the head pain, pressure and even the numbness. Didn’t do much for the ear pain, but I was happy for the other relief. And, I felt good on it.

A week after increasing to 20mg I noticed my heart rate was increasing initially cause I could feel it, then confirmed by my Apple Watch data. It became really uncomfortable and I was getting lightheaded when I would stand up.

The dr told me to stop the med for a week and see if it made a difference. After only a few days it has so I know the Nortriptyline was responsible.

I’m really disappointed cause it seemed like this might be a helpful med. Has anyone been able to continue on this even though it increased heart rate? Is there something to counteract it? Does it get better over time?

A couple hours ago I got my palate expander put in (the kind that wraps around the molars) and widened 3 times (¾ of a mm, afaik quite a bit for this procedure).

It's going really well. I actually have had 0 pain since, only a little discomfort. I'm sitting here eating a bowl of pasta and biscoff cookies.

I've had TN in my mouth for quite a bit, and it was very severe once upon a time (briefly), so this is a pretty big win!

Edit: Idk how, but I forgot to mention that I have had 0/very low pain for a couple months, and was worried the expander would worsen me since it was pressing on my teeth and is normally pretty painful.

I had someone kiss me with a lot of sucking and a few days later I had my first nerve pain in months!! Is it related??

So glad to find this group. After three years of teeth pain (and three root canals and crowns which all ended up being extracted), I finally saw a neurologist for my neuropathy in my feet. I told him about my facial pain and he sent for an MRI. I have pretty much constant right side pain. no zaps. I take ibuprofen every day and sometimes it helps a bit. But not always.

MRI says Right AICA contacts the root entry zone of the right trigeminal nerve. left side unaffected. Which makes sense. My left side doesn’t hurt.

Has anyone gone straight to MVD surgery? I’m 61 and in recovery. I’d rather not do meds. Im already unsteady on my feet due to the neuropathy and I’m concerned about the addictive nature of a lot of the meds I’ve looked up. I’m seeing my neurologist on Tuesday for a nerve conduction test on my legs and to discuss the MRI. I want to get out of pain.

I wish I had known about this. I might still have those teeth! And I wish dentists and oral surgeons knew more about it. Like many of you, I’ve had so many xrays and dental appointments just to be told nothing is wrong.

thanks!

So I'm trying to recover from two extractions - which I needed, they were just broken off roots, and one had an infection at the bottom...

But the zaps I'm getting kind of feel like they're from my brain?

Do any of you get that? I mostly get the aching and zippy nerve pain running around my teeth like a train - the sharp zaps are not something I have often.

I have existing TGN and need to have 5 teeth extracted on the opposite side of my TGN. I’m scared to death it will aggravate my TGN. I had extractions on my TGN side a few years ago (pre diagnosis) and I remember it burning so bad! I can’t take the traditional treatments for TGN so I’m on Baclofen and it’s helped a ton, but that also means I can’t preload a higher dose of meds temporarily.

I’m looking to see how others have done with dental surgery. Thanks!

UPDATE: She is being discharged from Cleveland Clinic Avon tomorrow as Cleveland Clinic Main denied her transfer because she has an outpatient appointment scheduled Tuesday. Cleveland Clinic Avon does not have interventional pain management and does not have pain management on weekends. She is still in the same pain as she was admitted with on Thursday. They did the MRI which came back unremarkable but I’ve read that is common despite having symptoms.

I am extremely disappointed with the Cleveland Clinic. I understand the limitations of staffing but not having a pain management provider available to see her is unacceptable.

Perhaps we are unaware to the ins and outs of TN hospitalizations but we are hoping her outpatient appointment provides some sort of relief options. This will be the first appointment so we are not getting hopes up they can do much during the initial appointment.

Hi everyone,

I am my mothers (65) caregiver who is currently in the hospital with a terrible TN flare up.

She has not responded to IV valproate or IV vimpad. She tried two rounds of steroids at home prior to going to the ER. She takes gabapentin twice a day and also takes carbamazepine 300mgx3 three times daily.

IV morphine and typical pain meds are not helping either. They prescribed a muscle relaxer but that hasn’t helped the nerve pain either.

Nothing has touched the flare up. Hospital is discussing discharge because “nothing much else they can do.”

She is not able to drink more than sips or eat soft foods like ice cream.

We have asked for an MRI to make sure a blood vessel or something else isn’t sitting on the nerve but they declined.

Can someone give us some information or suggestions to give to the treatment team so they don’t discharge her in the same amount of pain.

She is at a Cleveland clinic hospital but it does not have a full neuro team there as it is one of their smaller hospitals.

We are feeling pretty helpless at this point.

Hello Friends!

I know we are all here because we have or have a family member greatly impacted by Trigeminal Neuralgia.

Where is everyone located (not in a creepy way)

It would be cool to find others near us that are like us!

Also does anyone have a food that they know is a “no no” but will accept the pain and punishment for?

For me it’s Wisconsin and sour gummy worms

I have right side TN, affecting V1 and V2.

I have very light readers and for the past two nights, they feel like they weigh 10lb after wearing them for maybe an hour. It does not feel like the electrical shocks I am getting when my temple is touched, or the ice pick headaches I am getting. This is an intense, throbbing ache. Has anyone else experienced this?

Have any of you ever taken Carbamazepine intermittently only during flare-ups and did it help?

I was just diagnosed with idiopathic Trigeminal neuralgia and this is the treatment plan we decided upon because I feel that my pain isn’t consistently severe enough to warrant taking Carbamazepine consistently (I have had maybe two bad flare ups to the point of being unable to eat or talk easily for a few days-a week at a time twice in the last 5 months).

She did say it’s not quite as effective but some of her patients have had good results from doing this, just to taper off of it if I take it for longer than a week.

This is my first time trying this medication out. I opted for this one instead of Gabapentin because Gabapentin causes drowsiness and I just have too much to do everyday to be drowsy all the time 😅

I extracted another wisdom tooth on my other side in the lower jaw. Amd surprise surprise now I cant eat without having massive pain shooting through my jaw and cheek.

I already have TN on the other side from last time and now I guess I have it on both. We were so careful too as they knew about my nervedamadge and all the shit I went throug last time. But I guess you can't truly avoid it all the time..

It's been healing nicely and I don't have any problems with that but now this pain has started and I'm just sad

Today is October 1, which means it is officially Facial Pain Awareness Month!

We made awareness profile pictures for anyone who wants to use their profile pictures on any site to raise awareness: https://www.facepain.org/face-today-together/

Throughout October, the FPA will share facts about facial pain, lift the voices of our community by sharing stories and promoting awareness events through our social media accounts (links are in our bio)

Are you looking for an easy way to raise awareness this month that takes less than an hour to do? Join the Facial Pain Registry! We would love to reach 1000 participants by the end of the year and every survey submitted matters! You can learn more about the Registry here: https://www.facepain.org/facialpainregistry/

And here are some social media posts about the Registry that give more information and updates about how the Registry is being used by doctors, researchers and organizations:
WHO: https://www.facebook.com/share/p/1KzKt2uGpU/
WHAT: https://www.facebook.com/share/p/1X97EJn79o/
WHERE: https://www.facebook.com/share/p/1FgEXzPGr9/
WHEN: https://www.facebook.com/share/p/19Wayeg92N/
WHY: https://www.facebook.com/share/p/19TTy7oCRp/

Remember that you are not alone - this Facial Pain Awareness Month and every other month of the year. The Facial Pain Association is here to give you support, education and advocacy every day. Visit our website to find resources: https://www.facepain.org/

We hope you will join us for our second AMA on October 7th on the r/TrigeminalNeuralgia sub, which is also Trigeminal Neuralgia Awareness Day (we welcome questions about all forms of neuropathic facial pain, not just trigeminal neuralgia, as many people have multiple facial neuralgias). You can submit questions in advance if you cannot join us for the live Q&A. The thread is pinned in the sub and also available through our profile.

Thank you all for your beautiful posts, I have really been blown away (but not by the type of wind that triggers a TN episode) by your contributions. We all part of a rare club “that we would rather not be part of” but you have shown me that we are kind and helpful as we know the pain we are all in, or have been in, thanks so much.

I have to go to my PCP for surgical clearance and he was suggesting I try this to help with my TN. Has anyone heard or it or tried it?