Nerve Pain Face Trigeminal Nerves

P

Polly

New Member
HI I wondered if anyone would be able to advise me. I had a biopsy inside my mouth in the cheek ( negative). Over the course of the last year a pain has progressively developed such that when I speak it is akin to a knife being inside my mouth. Incredibly painful and no reprieve. All medical tests negative and the specialists say it must be nerve damage to the Trigeminal Nerve from the biopsy (albeit they have said this is rare). My personality could fit in with TMS.
The symptoms are not traditional Trigeminal Neuralgia.
Pls would anyone be able to advise if this is TMS?
Also I am doing all the TMS work that resonates, lack of fear, emotional, life changes, thinking etc however I find it impossible not to be preoccupied with the pain when speaking as it is so painful. Any clues on this?
Many thanks
 
Hi. I had a botched root canal/extraction nearly 5 years ago. They think chemical/surgical damage to trigeminal nerve as well. By the end of the first 2 years, I thought the nerves were 99% healed…but I was suddenly having excruciating SI joint pain and plantar fasciitis to the point I thought I’d end up in a wheelchair. I had to hire a dog walker! Then kidney stone surgery, apartment move, pandemic…and with a nervous system so ramped up, the face thing has been back nearly relentlessly since May 2020. Because I did have a period of nearly 4 months where I thought I was healed, but during which time the pain had moved, and because it all came back during high stress, I really believe this is TMS. Also, if I take Ativan (a benzo anti-anxiety and not a “nerve” med), the burning pain decreases as my nervous system calms down. Another indicator of anxiety-related pain. Im also the poster-child for TMS personality.

My biggest struggle is trying to get past the neurologists’ edict that nerves sometimes don’t heal well and will continue to misfire pain signals, and that maybe it’s structural, like trigger points in my neck.

I’ve had an email exchange with Dr. Schubiner and consultation with Dr. John Stracks and both believe that this is 100% TMS kept up by the anxiety and fear.
I’ve also been encouraged by Plum, a member here. Check out her story as she has dealt with atypical trigeminal neuralgia.

I have a whole lot of information on TMS, neuroplasticity etc. Where I’m stumbling, in addition to getting past the mental block of neurologist’s opinion, is putting into practice that knowledge, like doing the mindfulness and meditation etc. I know that I have to calm down the nervous system first and foremost.

Just my opinion, if things are progressing over time, it would be TMS. There is no on-going damage to the nerve. Has your stress increased over the past year? Covid, isolation, etc. etc.

I’m sorry all I can do is share my experience. Hopefully, because we have similar trigeminal issues we can encourage each other on this journey.
 
Hi @Sterling - thanks so much for taking the time to reply - much appreciated

Regarding your comment of if things are progressing it's TMS - do you mean if the pain is getting worse? if so yes it is getting much worse with time! My stress (with the exception of the last month) got much worse, as the pain was so bad speaking, i got more worried about what it meant for the future in terms of relationship, work, friends etc, and thus the pain got even worse and thus the bleaker the future looked and so on. A desperate cycle.

With regards to the neurologists comment that nerves don't heal - this is pretty similar to what I've had to deal with as I have also been told by some specialists it could be nerve damage. My thoughts on overcoming this which has helped me 1) there is absolutely no evidence that you have nerve damage. Specialists don't like to say we have no idea what is causing the problem when there is nothing on MRI's etc. 2) Even if it were nerve damage - it's still a case that the tooth is sending a neutral message to your brain and your brain is interpreting it as a pain. wrongly. (I have a v enquiring mind and my brain starts to question scientific facts about this etc but you just have to stop yourself going down that road). I regularly tell myself through the day that this is not pain it's just a faulty message and hopefully this will eventually make it through to the subconscious. 3) i listen every day to a story on Nicole Sachs podcast where someone has healed from TMS and tell myself that if they can heal I also can. The fact that you had SI and PF and TG pain - is really all the evidence that you need that it is TMS. So when you question the neurologist comment just remind yourself of the evidence you have it is TMS. Were you stressed at the time of the root canal?

What has helped me the most in calming the nervous system down is listening to so many success stories of TMS. As it has taken away most the fear of this being non fixable problem. I just can't get rid of the preoccupation as every time I talk the pain is so present!

Nicole Sachs journospeak (google it) am also doing - feel it is uncovering issues I had no idea I had. My life has been pretty blessed so initially assumed I had no repressed issues but was proved wrong.
Would love to support each other
 
You’re welcome and thank you for your feedback on my comments as well.
The root canal followed by traumatic extraction was done during a time in my life of extremely high stress. Major life events like divorce at 50, loss of my mom, health scares one after another within a 3 year period. Lifelong anxiety (particularly health anxiety), adverse childhood events, overthinking etc. all the stuff that adds up to being a TMS poster child!

The injury ended my communications career as talking is a pain trigger for me as well. I’m on disability now. Because there are fewer of us that have this trigeminal neuropathy, I’m finding encouragement in the success stories of people who’ve overcome CRPS as the changes in my sensations are resembling that condition with spreading out further from initial injury site. One member is Miffybunny. Her posts are so encouraging.

Over the years I’ve done much therapy but mostly CBT - useless for me though. I’m familiar with Nicole’s work, journaling, expressive writing etc. I’ve recently gotten into Internal Family Systems as way to unearth stuff that I thought I’d dealt with. I also started doing work with a TMS 3 Principles coach (based on the work of Syd Banks). That has helped me to become more aware of my low mood thinking. The concept is that it’s all just thought and the approach to resolving our pain and mental distress is from the inside-out versus outside-in, that it’s our “stinky” thinking that aggravates the pain and mental distress. We think ourselves into these desperate cycles.
It’s a new approach for me and I’m just learning.

Please do stay in touch and reach out anytime. (Because you can’t tell by my avatar and user name, just want to let you know I’m female :)
 
The Physical things are just 'triggers' and the body was just in need of a new spot.
I have been having this for a little more than a week now,(facial pain) but it didn't occur to me that this was TMS until yesterday when the pain became un-f-ing-bearable WHILE i was reading some enraging Political crap online.

I've been having some major dental stuff over the last two years..basically slowly replacing all of my old cracked/broken teeth with implants and crowns. After a relatively pain free 6 molars replaced, this very last one which was supposed to be the simplest one has become super painful..for no good reason.

Then I got the clue....it's not the height of the tooth or my bite or any of the structural crap. It's my inner feeling that I don't matter anymore and that I am losing interest in lots of things that used to occupy my time ..... As soon as it 'peaked' yesterday, I had my "aha!"

Just didn't get a house i made an offer on
Just decided to stop seeing my GF
Just sold the last property I had a maintenance contract on (now what am I going to do with myself?... no one needs me)
Just had someone hit my new truck when it was parked at the dentists (aha!)
Have a big tournament this weekend but i have been losing playing time to all these new YOUNGER guys who joined my team (aging...rage)

and I could fill this whole string with the little crap.

I noticed today that the pain is gone completely when I am playing guitar, playing ball, goofing off and distracted ...and becomes unbearable when I read the 'News' for a minute. Helplessness. ANGER. responsibility. Lack of responsibility. Aging....I know in Freudian dream stuff, the teeth always represent aging.

I can also assure you, if I hadn't got dental work done, I would have pulled up lame in my game, or got a something at work (neck, back, leg,etc).... I have been getting progressively angrier unconsciously without 'letting it out' or even acknowledging it. This is a maintenance program and I got lazy.

Time to start writing and looking again
 
@Baseball65 It's uncanny how often you write in a post exactly what I need to hear. We are creatures of habit and it doesn't take much to wander back into my old ways.
Giving up the news. It's too much for me.
Getting out the notebook. 100 small irritations = TMS pain. Doesn't have to be the big hidden trauma.

Thanks for your wise ways. I hope your teeth issues resolve very soon.
 
MWsunin12 said:
@Baseball65 It's uncanny how often you write in a post exactly what I need to hear. We are creatures of habit and it doesn't take much to wander back into my old ways.
Giving up the news. It's too much for me.
Getting out the notebook. 100 small irritations = TMS pain. Doesn't have to be the big hidden trauma.

Thanks for your wise ways. I hope your teeth issues resolve very soon.
Click to expand...

So true about the news. I’ve noticed that when I consume too much news or spend too much time doom scrolling, the old injury (dental/face) site burns even more.
 
Polly said:
Hi @Sterling - thanks so much for taking the time to reply - much appreciated

Regarding your comment of if things are progressing it's TMS - do you mean if the pain is getting worse? if so yes it is getting much worse with time! My stress (with the exception of the last month) got much worse, as the pain was so bad speaking, i got more worried about what it meant for the future in terms of relationship, work, friends etc, and thus the pain got even worse and thus the bleaker the future looked and so on. A desperate cycle.

With regards to the neurologists comment that nerves don't heal - this is pretty similar to what I've had to deal with as I have also been told by some specialists it could be nerve damage. My thoughts on overcoming this which has helped me 1) there is absolutely no evidence that you have nerve damage. Specialists don't like to say we have no idea what is causing the problem when there is nothing on MRI's etc. 2) Even if it were nerve damage - it's still a case that the tooth is sending a neutral message to your brain and your brain is interpreting it as a pain. wrongly. (I have a v enquiring mind and my brain starts to question scientific facts about this etc but you just have to stop yourself going down that road). I regularly tell myself through the day that this is not pain it's just a faulty message and hopefully this will eventually make it through to the subconscious. 3) i listen every day to a story on Nicole Sachs podcast where someone has healed from TMS and tell myself that if they can heal I also can. The fact that you had SI and PF and TG pain - is really all the evidence that you need that it is TMS. So when you question the neurologist comment just remind yourself of the evidence you have it is TMS. Were you stressed at the time of the root canal?

What has helped me the most in calming the nervous system down is listening to so many success stories of TMS. As it has taken away most the fear of this being non fixable problem. I just can't get rid of the preoccupation as every time I talk the pain is so present!

Nicole Sachs journospeak (google it) am also doing - feel it is uncovering issues I had no idea I had. My life has been pretty blessed so initially assumed I had no repressed issues but was proved wrong.
Would love to support each other
Click to expand...
Hi Polly, I’m relatively new to this site and am looking for Trigeminal neuralgia success stories too as - like you - I find they help calm my fear of the pain and provide hope that TMS and mindbody approaches (I read heaps including Nicole Sach’s work) really do help. I’d love to tick tack with you and Sterling and others on this forum to support each other through this. I healed my severe back pain some years ago using TMS, so I know it can work. And check out plum’s story and also Beth’s. Sorry this is short but I will update with more info on where I’m at down the track when I get the time. Take care and good luck (and vibes!)
 
Sterling said:
You’re welcome and thank you for your feedback on my comments as well.
The root canal followed by traumatic extraction was done during a time in my life of extremely high stress. Major life events like divorce at 50, loss of my mom, health scares one after another within a 3 year period. Lifelong anxiety (particularly health anxiety), adverse childhood events, overthinking etc. all the stuff that adds up to being a TMS poster child!

The injury ended my communications career as talking is a pain trigger for me as well. I’m on disability now. Because there are fewer of us that have this trigeminal neuropathy, I’m finding encouragement in the success stories of people who’ve overcome CRPS as the changes in my sensations are resembling that condition with spreading out further from initial injury site. One member is Miffybunny. Her posts are so encouraging.

Over the years I’ve done much therapy but mostly CBT - useless for me though. I’m familiar with Nicole’s work, journaling, expressive writing etc. I’ve recently gotten into Internal Family Systems as way to unearth stuff that I thought I’d dealt with. I also started doing work with a TMS 3 Principles coach (based on the work of Syd Banks). That has helped me to become more aware of my low mood thinking. The concept is that it’s all just thought and the approach to resolving our pain and mental distress is from the inside-out versus outside-in, that it’s our “stinky” thinking that aggravates the pain and mental distress. We think ourselves into these desperate cycles.
It’s a new approach for me and I’m just learning.

Please do stay in touch and reach out anytime. (Because you can’t tell by my avatar and user name, just want to let you know I’m female :)
Click to expand...
Hi Sterling, I’ve just posted a reply to Polly, but it’s also intended for you (and others in a similar predicament - it goes without saying!). I hope we can support each other. Sorry this is short but I will post more later, just short of time at the moment. Thanks for sharing your story.
 
Aria said:
Hi Sterling, I’ve just posted a reply to Polly, but it’s also intended for you (and others in a similar predicament - it goes without saying!). I hope we can support each other. Sorry this is short but I will post more later, just short of time at the moment. Thanks for sharing your story.
Click to expand...

Hi Aria. Yes, let’s definitely stay in touch. In my case, I’ve been “labeled” as atypical trigeminal neuropathy resulting from damaged nerves during root canal (chemical tissue/nerve damage) followed by extraction. The fact that I felt 99% healed for a few months early 2020 but was battling severe SI joint and foot pain confirms that this is TMS for me. Unfortunately, the past 2 years have been basically a non-stop flare up of the trigeminal neuropathy…likely resulting from the trauma of kidney stone surgery right at the start of the pandemic, Covid anxiety, plus a number of other stressors that have kept my nervous system ramped up like crazy.

I’ve started meditating regularly and using a TMJ trigger point tool that seems to help. Even if it’s placebo, I don’t care just as long as I get some relief from the incessant burning!

You may also want to look up a Niki Ruthie testimonial on the Curable app or site (may also be available on YouTube) on how she overcame classic Type 1 TN using the TMS approach after surgery and opioids failed her.
 
HI @Aria and @Sterling

Good to hear from you and would be great to support each other. Also thank you for the tips as to what you have found helpful. I am regularly throughout the day repeating to myself that there is nothing structurally wrong etc plus saw a hypnosis lady who made me a tape to reaffirm this message plus doing Journospeak. not much change in pain but life is enjoyable again as feel I can beat this.
Sterling that's really funny are 3 principles. I studied this to be a coach years ago! It's brilliant. Check out Michael Neil - free on instagram / podcasts - under Caffeine for the Soul. He was my goto when learning about this.
lol xx
 
Polly said:
HI @Aria and @Sterling

Good to hear from you and would be great to support each other. Also thank you for the tips as to what you have found helpful. I am regularly throughout the day repeating to myself that there is nothing structurally wrong etc plus saw a hypnosis lady who made me a tape to reaffirm this message plus doing Journospeak. not much change in pain but life is enjoyable again as feel I can beat this.
Sterling that's really funny are 3 principles. I studied this to be a coach years ago! It's brilliant. Check out Michael Neil - free on instagram / podcasts - under Caffeine for the Soul. He was my goto when learning about this.
lol xx
Click to expand...

what a coincidence! Lol
I did read one of Michael’s books, watched tons of videos by him and various other 3P coaches, practitioners. But trying to watch or read Syd Banks himself…it’s like word salad lol
 
Hi,
There is hope - I promise you. I have now been pain free for 14 months and believe that I am now in control of how my body responds to stress.
I suffered with TN on and off for years and had a microvascular decompression which worked but then it recurred seven years later during a particularly stressful time. I came across Niki's story on the Curable app which inspired me to seek alternative ways of management, other than medication. This led me to Dr Sarno and Dr Gabor Mate.
I have no doubt that stress, fear and repressed emotion are at the root of this (for me at least).

What really helped me was 'journaling', Initially I made a list of all the things that happened to me in childhood (up to 18) that I wouldn't want to happen to my own child or one that I know. And then things that had happened in the past year that had been stressful or exciting.
I took them one by one and spent 30 mins each morning on one and 20 mins in the evening on another. - I set the timer on my phone, so as not to run over.
When writing about each event, I tried to recall each tiny detail which would often bring up a 'feeling' - usually nausea. If I allowed myself to feel the feeling and not be distracted or dampen it down, I found that I could begin to put a name to the feeling (usually fear, shame, anger or loneliness) and experience what it felt like. It was a totally liberating experience!!

I kept seeing myself as a bin that had had so much rubbish piled into it, but had never been emptied. When the rubbish was overflowing it had been really squashed down to make more space - but it was now absolutely full. There was nowhere else for it to go and so it was leaking out in all sorts of weird places.
As I journaled - and crucially allowed myself to feel the emotion connected with the memory - not just recalling the facts (which I think can make things worse), I imagined the bin being slowly emptied, bit by bit.

I don't need to journal anymore - but do so if I have a few twinges or know that there is something bothering me that I can't put my finger on.
It seems really easy - and it is. The difficult part is allowing yourself to experience emotions that you were led to believe were unacceptable or unsafe.

Good luck - you really can turn this around!!
 
@Eureka Thanks so much for taking the time to encourage us....hugely appreciated.

wow I have my first 2 hours per day of no pain for 2 days and now it is back to the same of being in pain every day. ( emotions/ stress levels etc all stayed low). It has given me hope as this is the first time I have had a pain free hour since my TMS started. Have others just had a tiny glimpse of reprieve for it to then return to where it was, but still been on the road to recovery?

Many thanks for any advise
 
Polly said:
Have others just had a tiny glimpse of reprieve for it to then return to where it was, but still been on the road to recovery?
Click to expand...
Yes. I have had it completely be gone...and then notice that when something 'sneaks up on me' again, it returns...but it is shorter each time and most importantly, the FEAR is going away.

Sarno discussed that in his books, but not the mechanism. I have an 'attack' and it is intense and I am scared "what's wrong with me?"
Then, I figure out it's TMS and it usually goes away 100%. THEN, I get lazy, or play host to some anger to entertain myself, and it comes back in a dull annoying sort of way.... nothing like the first time, but just to remind me "hey... you can't afford this anger in your budget...stop reading the news...start writing about what your angry about.... get out of your head"

Your having made it go away at all is proff positive that it's TMS. Then it just comes down to..sometimes it's easier to have the pain then to deal with what is bugging us. Weird, huh?
 
Many thanks @Baseball65 much appreciated. Did you have tiny windows of no pain in the v early stages of your recovery ie not a lapse once you had recovered. Wondered if tiny window of no pain and then back to endless pain was sign of something starting to shift!
 
Polly said:
Wondered if tiny window of no pain and then back to endless pain was sign of something starting to shift!
Click to expand...
Yes, and it's important to note what was different. Out playing having a good time, not minding the world and it's endless cares... no pain. 15 minutes of reading news and ...OUCH my face is killing me
 
Polly said:
Many thanks @Baseball65 much appreciated. Did you have tiny windows of no pain in the v early stages of your recovery ie not a lapse once you had recovered. Wondered if tiny window of no pain and then back to endless pain was sign of something starting to shift!
Click to expand...
Hi Polly. I’ve been wondering how you’ve been.
 
Aria said:
Hi Polly, I’m relatively new to this site and am looking for Trigeminal neuralgia success stories too as - like you - I find they help calm my fear of the pain and provide hope that TMS and mindbody approaches (I read heaps including Nicole Sach’s work) really do help. I’d love to tick tack with you and Sterling and others on this forum to support each other through this. I healed my severe back pain some years ago using TMS, so I know it can work. And check out plum’s story and also Beth’s. Sorry this is short but I will update with more info on where I’m at down the track when I get the time. Take care and good luck (and vibes!)
Click to expand...
Hi Aria. How have you been?
 
Hi @Sterling Many thanks for your message and apologies for not writing sooner.
Well mentally I'm in a great place but the pain is pretty bad still. I am however getting the very odd reprieve and the pain is vaguely unnoticeable.
However if i look at my journey since this started in March 2021 I am so much better. In february 2022 my speech was still totally different and I couldn't speak properly in the sense of pronouncing words how I normally do. Now my speech is totally back to normal. The pain is also better since then.
I'm journospeaking every day plus meditating to calm the nervous system down. I"m also following Alan Gordon's motto that success isn't a pain free day but a day where you haven't dwelled on the pain too much.
How are you getting on?
I will answer your other question in the other thread.
Sending you lots of love and healing vibes x
 
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