TRIGEMINAL NEURALGIA | WHAT IS THE PAIN REALLY LIKE?

[@supermomma8134]

I was diagnosed last year with TN. I always say it feels like a searing hot ice pick in my cheek. I’ll be having the surgery soon and I am scared to death. Much compassion to others suffering from this.❤

[@Letsfaceittogether]

It's a terrible pain. I'm sure you are very worried about the surgery, but hopefully, it will be the beginning of a better quality of life. Thank you for supporting the channel.

[@supermomma8134]

@@Letsfaceittogether thank you ☺️ and you’re most welcome 🤗

[@adamsmith583]

How was the surgery?

[@supermomma8134]

@@adamsmith583 I am doing amazing now! Best thing I ever did!!!

[@Torbis101]

The pain in my case is only 2nd to the pain of childbirth. It's absolutely horrible!

[@Letsfaceittogether]

Yes, I understand. Its really quite unbelievable. I hope you find a way of relieving it

[@barbaradonovan3260]

I just discovered your you tube channel. Just wanted to say thank you for sharing your story. I have been on this TN journey for ten years now and it is so isolating and you took a bit of that loneliness away. It is just so very hard getting through this pain.

[@Letsfaceittogether]

Thank you, Barbara 😊 It hasn't always been easy to share. I think that's why there aren't many channels 🤔 out there. I'm glad it's helped a little!

[@Pdr-os1ft]

Thanks for the videos. My facial pain started after an upper neck injury at the beginning of 2022. But looking back I've had unexplained deep ear pain that even a ENT doctor couldn't even figure out. I think that was the start. I'm now taking Pregabalin and it helps take the face pain down a few notches on the pain scale. Here in Canada our medical system is very messed up from Covid and the only help I've managed to get after 9 months is a pain clinic. The trust I had in our medical system is almost gone.

[@Letsfaceittogether]

We absolutely have the same problem in the UK. Very limited resources. I was told I would have been referred to neurology before covid

[@tee801]

I was diagnosed on Monday, now that Im doing my research and speaking to my friend who is a sufferer and been through surgery and doing very well, Ive realised that my dry socket after root treatment years ago wasn’t a dry socket. I roll a class of very cold water over my pain site to alleviate the pain, I’ve been doing that for years and only realised yesterday. I walked into the doctor and told him this is what i had and he diagnosed me in the spot. Ive been so lucky to be diagnosed so fast. Hugzz to all

[@Letsfaceittogether]

It is very unusual to get such a fast diagnosis. Well done. Brilliant that you have a friend who understands too!

[@ollawoolknit]

Thanks so much and keep on trying to find out the best way for you. So good to hear from so many people in similar situations. I have been listening to so many and so different stories of TN1 and TN2 (Which seems to be the case with my husband). He had the ballon surgery but did not have good results so his doctor is trying several medications, we hope for the best for him and everyone else with TN. with love, 🌎

[@Letsfaceittogether]

Thank you so much for taking the time to watch and comment. I hope 🙏 things work out better for your husband

[@MegaSandybeach]

does anyone feel like their eye on the affected side feels like it is goin to explode when the pain hits it

[@deborahbagby1652]

Sometimes it does. I'm sorry you are dealing with this. Hugs.

[@Letsfaceittogether]

A fair amount of people have mentioned associated eye pain on the channel. I'm sorry, sounds horrible

[@jillymc]

Hi, I have recently been diagnosed with TN following the results of a MRI. It started for me a year last June when I had my second COVID vaccination. It also caused Bell's Palsy. Still waiting to see a neurologist (the last time I checked I was 20 weeks from the top of the waiting list) and my doctor is still trying to manage my pain. I'm constantly being bombarded with different pain sensations on all 3 branches of the nerve and then I get the sharp electric shocks randomly as well. Thanks for the video, it made me feel less alone.

[@Letsfaceittogether]

I really hope they can stabilise things for you. Glad you feel a little bit of comfort from the videos Jill

[@hypothetical300]

I suffer from this and Bells passed, gn,vn, and fn from the first vaccine. I feel you. It's been a horrible journey. 2 years and 1 month.

[@hypothetical300]

Did you ever get help?

[@jillymc]

@@hypothetical300 Bell's Palsy has subsided some but I still have problems with half smiles being wonky. I finally had a telephone appointment with the neurologist who just suggested some alternative medications. Had to move from one because of the side effects. Still can only tolerate a small dose which just takes the edge of things. Over 2 years if hell for me too. Have you got your pain under control yet?

[@budrekot]

Very well explained. I've been diagnosed with TN about 5 years ago, I can relate to the ear ache when it's cold before I was diagnosed. The TN has been in remission for a couple of years with just the odd flare, but the last few days it's reared it's ugly head again, I was rolling around the floor with it this morning, it's horrendous. It's calming down again now, leaving me with the temple pain ear ache and jaw/cheek pain. I'm on Gabapentin and I don't think it's helping much now. Thank you for these videos. Male 45 UK.

[@Letsfaceittogether]

Great to hear from you. I dread the day I get a major flare up again!! Thank you for your support.

[@adamsmith583]

I triple my dose of gabapentin when I have a flare up

[@dinifeli1046]

I am praying for you. I have the same symptoms .been going through it for over a year now.

[@Letsfaceittogether]

Thank you, Dini. Most of the time, I do okay now! Good days and bad days. But more good than bad

[@dinifeli1046]

God is good. And I just ask Him to sustain me through this trying times. I have never felt this kind of pains before ,at times, its like what you said, its more of panic when its not there, your anxious just thinking when it might strike again

[@cici33seeya]

Thank you so much for sharing ❤ You look and sound amazing. God bless 💙 I do believe I have this due to the pain and symptoms also a few nurses said it looks as though I may have it when I was admitted into the hospital for 7 days with no diagnosis. As my pain management doctor did a caudle epidural procedure on March 7th 2023 when I went into her office for an SI JOINT injection. I immediately had ear ringing, started drooling, and dry heaving. I have to learn to live with my ear and face like this because no doctor's after 3 different hospitals will listen to me over her. I appreciate your stories 💚

[@Letsfaceittogether]

Hi 👋 it's sounds like a plausible explanation for you pain! Sometimes us TN sufferers get the, 'it probably is' comment because everything else is ruled out. I hope you find lots of ways to cope. Thanks for joining the channel

[@craigk2644]

Thank you for sharing your story. I was diagnosed via a MRI. Artery touching the nerve. However I do not experience your level of pain. Having moderate facial and head pain. Similar to you had ear ache for no reason. Do hope you go into some type of remission. I had electric shocks a few times in the past, thankfully not frequent. I will be listening to a few more of your vids so that I can relax abit with my TN.

[@Letsfaceittogether]

Thanks, Craig. I'm doing pretty well these days. I'm glad your pain levels were not debilitating. I hope my videos are helping you

[@alejandraaraiza8454]

I Give God all the glory , for taking the pain for and from me! Thank you Jesus!

[@Letsfaceittogether]

Amen xx He's done it all

[@samanthawinkelman8044]

My husband has had this for 33 years, recently had an ENT op, to remove the fungal infection, absolute disaster, it's made the pain 100/100, can't sleep, eat work. Horrific pain

[@Letsfaceittogether]

Oh no, Samantha, I'm so sorry. I hope it improves for him

[@jtmckay2116]

I have trigeminal neuralgia I was diagnosed 2 years ago and the pain is insufferable I've not had the courage to get physical therapy I'm on anti seizure medications that seem to help but it still comes back it's best explained by me as a sharp pain that begins behind my right eye and goes to my ear and jaw like a throbbing electrical pain almost like having a car battery wire stuck into my eye socket it's horrible and debilitating I press hard with both thumbs on my temples to get minimal relief!

[@Letsfaceittogether]

Well described! It is horrible 😢... Thank you for being here on the channel

[@marymoore1241]

Thank you for sharing your story.

[@Letsfaceittogether]

Thank you Mary

[@adamsmith583]

1500 mg gabapentin, 10 mg carbamazepine, 10 mg flexeril, 1000 mg Tylenol, washed down with a full bong load and some tums. Luckily ive been in remission for about the last 5 days. God bless

[@Letsfaceittogether]

Wow Adam, that's a lot. So glad things have settled for you though. Thanks for being part of the channel

[@edwardh1591]

I have had it for 25 years and never knew what it was until I found a medical doctor who dealt with it. Such a miserable situation. It now leaves me incapacitated when it flares up. There is nothing that can be done.

[@Letsfaceittogether]

It is very tough to have. Sometimes things can improve, but I feel for you. I hope you find some quality of life in between flare ups

[@adamsmith583]

Marijuana helps me when nothing else does..carbamazepine.. gabapentin .. Tylenol

[@traceytansley1659]

B1 and B12 plus 3 capsules of Alpha Lipoic Acid for nerve pain, also high dose Viramin D3 might help.

[@garywilcox3591]

I have TN type 2 and this is exactly what I am going through. After four years I now have a constant earache. When I have a bad attack it comes on very slowly and builds in pain and it can last up to three days. Since taking medication it's down to one day.

[@Letsfaceittogether]

It's reassuring for me that someone goes through a similar experience. I'm doing much better now. It sounds like you are gradually improving, which is great news!!

[@hassanzebian7342]

Yes I've had the same type of pain for a few years now. Very painful

[@Letsfaceittogether]

Yes, it's very difficult

[@shaskins15]

I've had 2 episodes in a month and I'm only starting to suspect that I'm dealing w TN. I thought it was tooth related but its definitely a different kind of pain. It comes on extremely sudden, like you're getting stabbed in the face. Then it will hurt but the random stabbing is the worse pain I've ever experienced. Its like an electrical shot, a hot slicing pain straight up into the face.

[@Letsfaceittogether]

It definitely sounds like it could be. I hope you can find someone who can confirm for you.

[@plasticman3952]

My TN pain seems to be in remission. I'm taking B1 and B12 vitamins and other supplements now. I'm optimistic, but I know the pain could return like it did before without vitamins. Microvascular Decompression surgery should eliminate the pain. but facial paralysis is possible. Reducing my body's inflammation was the key to my relief. I really hope this helps somebody.

[@Letsfaceittogether]

I'm so happy for you that you don't suffer the pain now every day

[@blinkspacestudio8892]

Currently I have a pain in my back molar, could need root canal I am not sure yet. Had a fever over the weekend and all of a sudden this freakin pain came out of nowhere. It hurt to the point that I immediately took 2 neurofin, which did nothing. It scared me Il be honest, it feels very claustrophobic. One thing that confused me is that it went away just as quick as it happened. Then it comes back really strong for about a minute. It is starting to move along my upper teeth and lower jaw. Id rather have a root canal then TN, had it ONCE before and was lucky when it went away.

[@Letsfaceittogether]

Let's hope it's a dental problem 😬 rather than TN. Hope youir pain is reduced soon

[@christinevanhook5811]

Thank you so much

[@Letsfaceittogether]

You're welcome 😊

[@hemophiliacheroes340]

my TN constant pain just started b4 10days my TKR done b4 3months . taking tegretol , hemophilia + TN + arthritis + rls , m 36 yrs old from india ,lots of health issues , very cruel painful life only pains

[@Letsfaceittogether]

I'm sorry to hear that you've been through so much pain. I hope things can improve for you soon. Thank you for commenting

[@hemophiliacheroes340]

​@@Letsfaceittogether suffered a lot , one sided life only pain and sadness planning to put a full stop to it , but i gave a big fight against all this and did something to proud about , c my vidz

[@Letsfaceittogether]

@@hemophiliacheroes340 yes that's a brilliant response to it.

[@mahasalem8646]

اسماء الدواء العلمية لو سمحت

[@jtmckay2116]

I'm also on tegratol It helps somewhat but doesn't always end the pain

[@steph6337]

My front right tooth started feeling numb but painful. Almost like novacaine but with pain. Almost feeling like i was punched. The pain started traveling to the roof of my mouth, my nose, jaw, eye socket, temple. Only on the right side of my head/face! I was scared I was having a stroke. Anyone that has been diagnosed with this, would you describe the feeling like numbness with pain?

[@Letsfaceittogether]

I think people's experiences definitely vary a lot. I think the clue is pain along the trigeminal nerve area. I don't think I really had numbness but that's not to say you don't have it.

[@Heinz57ish]

My pain started on and off a year ago. It would come and go. In the last two months it's really ramped up to the point I thought it was a rotten tooth. Went to the dentist this week and they said all my teeth are fine. Apparently my jaw isn't level and they are making me a toothguard. I think it could be TN. On pain relief every 4 hours atm but some days there's no pain and some days it's excrutiating.

[@Letsfaceittogether]

I'm sorry to hear this. I hope things settle down for you

[@Heinz57ish]

@@Letsfaceittogether Thank you. There's a possibility it could be TMJ so fingers crossed.

[@alexndannycasillas5526]

​@CrazyCatLady I seem to be on the same boat as you. I'm currently waiting to see if my mouth splint works. Here's hoping

[@thekid5729]

Can somebody explain the pain in which I suffer from. The pain is very sharp in my lower jaw, sometimes in my ear, then it rotates upward. I hope that it isn't TN.

[@Letsfaceittogether]

Hi 👋 it could be, but I'm not medically trained to comment. Perhaps a visit to your health care provider would be a good idea.

[@joancacho119]

I'm Joan Cacho please help me I have that pain ma'am traigimenal Neurgia

[@TmrXkm]

Did I miss the name of the tablets? Please tell me

[@Letsfaceittogether]

I'm on tegretol or another name for them is carbamazepine

[@savemeows]

If i dont eat any thing im good!!

[@Letsfaceittogether]

Sorry to hear you are starting out with this, and eating is difficult

[@Simon-im2zn]

Did you get ongoing headaches with this?

[@Letsfaceittogether]

Yes, Simon, but particularly on one side and in my temple area

[@Simon-im2zn]

@@Letsfaceittogether I have issues recently with ongoing headaches in the forehead region and particularly on the left side just in the temporal area, no issues elsewhere, so my thinking is that I may have temporal tendinitis or the issues stem from the neck (occipital). I saw recently that TN sufferers should look into getting there C1, C2 vertebrae checked.

[@savemeows]

I have started feeling numbness and tingling in ky ear canal which comes and goes, it seems i am starting the journey.

[@Letsfaceittogether]

Yes, I find pain in my ear is common for me!

[@savemeows]

@@Letsfaceittogether did u at any point have numbness tingling without pain when it was not as severe ? I feel numbness and feel like my ear canal mostly towards the outer rim has needles.. it comes after i eat ..and when im tired and goes away early morning and when i dont eat.

[@savemeows]

@@Letsfaceittogether but did u have numbness and tingling without pain at first??

[@Letsfaceittogether]

@@savemeows hi 👋 no...I don't think 🤔 I had numbness, maybe some tingling

[@daphnedilana1078]

I was wondering How long are those painfree episodes Hours,days,weeks,months???

[@Letsfaceittogether]

In the beginning maybe an hour or so! Now that I'm stable days xx

[@catlue7006]

🤗💜