Nerve Pain Face Trigeminal Nerves

[Sterling]

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

Hi Polly.
No apologies necessary. Thank you for your reply.

I’m so happy to hear that things are better!

I’m struggling a bit. I’m now off all meds even my go-to benzo that I’ve used to calm the anxiety and subsequently the increased flare ups by end of each day. But I’m determined and encouraged by you and the other members. It’s just nice to know that one isn’t on this journey alone. I’m looking forward to working with one of Alan’s coaches. I missed his motto in my readings but I love it. I’m putting that on a post it note on my bathroom mirror

Returning love and healing vibes to you.

 

[Polly]

Hi @Sterling How are you struggling hon? With the anxiety or flare ups? If it's anxiety remember that all anxiety is is a thought and a body sensation. Focus on the body sensation not the thoughts are they just multiply and multiply and are only dependent on your mood in the moment. ie if in a good mood won't have all those thoughts etc. If its flare ups - remember recovery is not a perfect straight line trajectory. Re Alan's quote - a day without thinking about pain is success as the more you don't think about pain the more you will heal. Can't wait to hear how it goes with the coach - I might book one too!

 

[Sterling]

Hi @Sterling How are you struggling hon? With the anxiety or flare ups? If it's anxiety remember that all anxiety is is a thought and a body sensation. Focus on the body sensation not the thoughts are they just multiply and multiply and are only dependent on your mood in the moment. ie if in a good mood won't have all those thoughts etc. If its flare ups - remember recovery is not a perfect straight line trajectory. Re Alan's quote - a day without thinking about pain is success as the more you don't think about pain the more you will heal. Can't wait to hear how it goes with the coach - I might book one too!

I’m struggling with the idea that this flare up has been going on for two years, so it’s both the pain and the anxiety. I’m particularly stuck on comparing it to the 4 months of bliss (despite the SI joint pain) in winter 2020 when I thought it was healed. It’s like psychological warfare.

But I’m meditating, doing mindfulness, reaching out to wonderful compassionate people like you.

It helps to remind myself that anxiety is just energy in the body and after 50 years of it, it hasn’t killed me yet

I’ll definitely let you know how it goes with the coach.

 

[Skylark]

Hi, I know I’m late to this thread but I wanted to tell you all that I have also had atypical TN after a sketchy wisdom tooth removal. Went away, came back, etc for 7 years until it came back and STAYED. And then, impossibly, spread to the other side of my face too! It’s TMS. No doubt. It’s gone now. I recently had a flare up during a time of stress but it’s didn’t last very long. I tell my brain “oh we’re doing this today?” and then just move on. The key for me was really to just accept that the pain is there. Get bored with it basically. I know that sounds impossible because it HURTS, but it is imo the best way to “outsmart” your unconscious mind. I am proof that it is TMS….since it went away I have experienced….severe acid reflux/lpr, severe lower right abdominal pain, hip pain, leg pain, gastritis, back pain, migraines, anxiety, fatigue, etc. Like, ALL the pains lol. All symptom imperatives and all tries by my brain to distract from feeling my emotions and getting to the root of my issues. But, just like in SteveO’s book, my TMS overplayed its hand. Now I’ve got it on the run and it’s like “shit what can I do now? She knows!” Lol. So the process usually goes…I wake up with some severe new symptom, freak out for a couple days to weeks to months, realize it’s TMS and then stop panicking and it goes away and then a couple days later some other new symptom starts. Guess I’m gonna repeat that until I learn my lesson that unless it’s an injury, heart attack or stroke (which my brain has tried to convince me of multiple times) it’s TMS. Try not to be afraid, it’s fear that continues the cycle of pain and symptoms. Clearly, I still have fear since I still have symptoms. Do the work that feels good to you, get exercise, find a hobby you like and know that the pain won’t be forever. And bonus, if it wasn’t for the pain none of us would know about mind/body work and the life changing things you learn along the way! Stay strong and know that facial pain IS tms. It can and will go away.

 

[JanAtheCPA]

I tell my brain “oh we’re doing this today?” and then just move on.

Yeah, baby!

Seriously, folks - I also believe that tuning in to your negative inner dialogue, and literally talking back to it, is a HUGELY powerful technique. Works for me over and over. And yes, like @Skylark, I have acknowledged and accepted that this is clearly a constant process - but also like @Skylark, I know that it's also totally manageable.

Re Alan's quote - a day without thinking about pain is success as the more you don't think about pain the more you will heal.

And like any other skill, it just takes practice, until you suddenly realize that it's becoming more and more automatic.

 

[Sterling]

Hi, I know I’m late to this thread but I wanted to tell you all that I have also had atypical TN after a sketchy wisdom tooth removal. Went away, came back, etc for 7 years until it came back and STAYED. And then, impossibly, spread to the other side of my face too! It’s TMS. No doubt. It’s gone now. I recently had a flare up during a time of stress but it’s didn’t last very long. I tell my brain “oh we’re doing this today?” and then just move on. The key for me was really to just accept that the pain is there. Get bored with it basically. I know that sounds impossible because it HURTS, but it is imo the best way to “outsmart” your unconscious mind. I am proof that it is TMS….since it went away I have experienced….severe acid reflux/lpr, severe lower right abdominal pain, hip pain, leg pain, gastritis, back pain, migraines, anxiety, fatigue, etc. Like, ALL the pains lol. All symptom imperatives and all tries by my brain to distract from feeling my emotions and getting to the root of my issues. But, just like in SteveO’s book, my TMS overplayed its hand. Now I’ve got it on the run and it’s like “shit what can I do now? She knows!” Lol. So the process usually goes…I wake up with some severe new symptom, freak out for a couple days to weeks to months, realize it’s TMS and then stop panicking and it goes away and then a couple days later some other new symptom starts. Guess I’m gonna repeat that until I learn my lesson that unless it’s an injury, heart attack or stroke (which my brain has tried to convince me of multiple times) it’s TMS. Try not to be afraid, it’s fear that continues the cycle of pain and symptoms. Clearly, I still have fear since I still have symptoms. Do the work that feels good to you, get exercise, find a hobby you like and know that the pain won’t be forever. And bonus, if it wasn’t for the pain none of us would know about mind/body work and the life changing things you learn along the way! Stay strong and know that facial pain IS tms. It can and will go away.

Skylark, you have no idea how much your post resonated!
Emotionally, it’s been very difficult because this thing came back with a vengeance after about 4 months of bliss. It’s been 2 years straight and I was getting pretty depressed and desperate that this was it.

At one point last year, it was starting to mirror on the other side and I could have sworn it was a dental problem. When I got clear cone beam cat scan results and was relieved there wasn’t anything structural, all the symptoms on that side went away. More proof this thing is TMS.

My brain tries to convince me of all the worse case scenarios too lol

I’ve been having a hard time because I’m very Covid cautious and quite isolated, hyper alert about my Covid protocols so my nervous system has been jacked up even more because of this pandemic. I’m looking at ways to cope better and re-engage with life in a safe way. I think that will go a long way to relieve the symptoms. I was starting to do that in the months leading up to that blissful period, then the pandemic. I’m feeling grief at the loss of those opportunities and anger. Contributing factors in this nasty flare up I’m sure.

Thank you for sharing your story and words of wisdom

 

[Aria]

Hi Aria. How have you been?

Hi Sterling - apologies for taking so long to reply - and thank you for asking. I’ve been AWOL from this forum for way longer than I meant to. I’m only just checking in briefly now but will be back on board hopefully this weekend. As for how I’ve been - I’m in a holding pattern right now, not better not worse, but then again nor have I been applying the mindbody techniques I know I should so no surprise there! Just clearing the decks right now so that I can get stuck into some journalling etc. Yesterday I (finally!) subscribed to the Curable app to help me get started. One insight I’ve had though which has helped motivate me is that it doesn’t matter if I 100% believe this approach will help ‘cure’ me or not, I’m just going do the mindbody work anyway & am pretty sure I’ll derive some benefit.

How are you?

 

[Sterling]

Hi Sterling - apologies for taking so long to reply - and thank you for asking. I’ve been AWOL from this forum for way longer than I meant to. I’m only just checking in briefly now but will be back on board hopefully this weekend. As for how I’ve been - I’m in a holding pattern right now, not better not worse, but then again nor have I been applying the mindbody techniques I know I should so no surprise there! Just clearing the decks right now so that I can get stuck into some journalling etc. Yesterday I (finally!) subscribed to the Curable app to help me get started. One insight I’ve had though which has helped motivate me is that it doesn’t matter if I 100% believe this approach will help ‘cure’ me or not, I’m just going do the mindbody work anyway & am pretty sure I’ll derive some benefit.

How are you?

Hi Aria.
Same here. I’m not popping into the forum too often.

I’ve started working via Zoom with a Pain Reprocessing Therapist from Alan Gordon’s centre and I’m very slowly learning how to feel safe with body sensations and emotions.

The only goal I have is to try to decrease the fear and anxiety particularly surrounding the pain in the hopes that doing that on its own will turn down the volume on the sensations. I still struggle with 100% belief in TMS, but that’s ok. One step at a time.

Working with the therapist keeps me accountable in regards to doing what is best for myself. I try not to view the approach as a set of techniques that will “cure” me, but rather as ways to calm down a severely dysregulated nervous system.
I keep renewing my Curable subscription but I never use it anymore. I’ve been doing the Nicole Sachs style of journaling. I’ve had a few insights but I’m not sure if it’s helping with the pain. I do it a few times a week or when something arises.

I’ve finally found a hobby that keeps my interest and I ordered a bike (after not having one for over 10 years). I think that cycling will help because I tend to ruminate too much when I’m walking. Watching for cars will keep me in the present and out of my head lol
I definitely need more fun and pleasure; I think that will go a long way in increasing feelings of safety and turning focus away from the pain. It’s been so hard during this pandemic as I’m highly Covid cautious (self-imposed isolation) and therefore, constantly on high alert. Not good for a brain that’s always scanning for danger!
And social engagement is key in feeling safe. I really believe that I’d be in better shape if not for this pandemic.

I’ve also committed to breaking bad habits that have been jacking up my nervous system like doom scrolling on Twitter.

I have some better moments with the pain, but it’s still very much a roller coaster and I’m struggling with simply enjoying the better moments because I’m scanning for a change in the pain, wondering if it’s going to get worse again, etc. So my thinking and staying present is something I’m working on.

Anyway, that’s my report lol

Reach out any time!

 

[JanAtheCPA]

Great update, @Sterling - lots of important and valuable nuggets for anyone who is struggling!

All my best to you

~Jan

 

[Sterling]

Great update, @Sterling - lots of important and valuable nuggets for anyone who is struggling!

All my best to you

~Jan

Thank you

 

[Hannah7]

Thank you

Are you better? I have the same thing and wondering.

 

[Sterling]

Are you better? I have the same thing and wondering.

Sorry. Just seeing this now. It’s been up and down for various reasons. I had quite a few decent weeks face wise when my brain was preoccupied with another symptom, but as soon as that symptom was dealt with, the face thing went nuts! So I’m back to struggling with the fear.
How are you?

 

[momar]

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

Hello

can you do an update ?? did you overcome the TN pain ?

 

[momar]

Sorry. Just seeing this now. It’s been up and down for various reasons. I had quite a few decent weeks face wise when my brain was preoccupied with another symptom, but as soon as that symptom was dealt with, the face thing went nuts! So I’m back to struggling with the fear.
How are you?

How are you trcking now ?

 

[Sterling]

It’s still up and down but it’s definitely TMS. I have a solid evidence list and a long list of “rescue reminders” - days that it feels 90-95% improved. I refer to those lists a lot as well as the recovery success stories I’ve managed to find. How are you?

 

[momar]

It’s still up and down but it’s definitely TMS. I have a solid evidence list and a long list of “rescue reminders” - days that it feels 90-95% improved. I refer to those lists a lot as well as the recovery success stories I’ve managed to find. How are you?

that is great - i am sure you want to never feel it ever though -
I have a dentist appt tomorrow for fillings and am def feeling the nerves on all levels

 

[Sterling]

I understand 100%
I’ve had filling and cleanings done in “that” area with minimal after effects. Wishing you the best for tomorrow.

 

[momar]

I understand 100%
I’ve had filling and cleanings done in “that” area with minimal after effects. Wishing you the best for tomorrow.

Thank you - I know fillings are minor work but you know - fear creeps in - I've had so many fillings before with zero issues all before TMS started

 

[Mr Hip Guy]

Interesting thread.

On the subject of nerves and healing, and also "what doctors say" - I'll add my anecdote.

When I had my hip surgery 8 years ago (all TMS related - different story, different thread), I had a number of "complications" coming out of that surgery. One of the very oddest was a "winged scapula." (Google it) One day, driving home from somewhere I reached up to hit my garage door button and my right arm suddenly felt like I was holding a 10lb dumbbell. When inside I noticed that when I lifted that arm, my scapula (back shoulder blade) would "wing" out and protrude - the other side, my left side, was fine. Alarmed (to say the least) at my next doctor visit I showed them the symptoms and they said it was "winged scapula" and that it was the result of nerve damage to the "long thoracic nerve" that signals the scapula/blade to lay flat against the back.

How did my nerve get damaged? Who knows! but the doctor said it was likely related to my surgery and could've occurred when they were transferring me unconscious from the surgery table to another table/gurney etc. But don't be alarmed because it usually resolves itself as the long thoracic nerve will heal but only at the rate of a depth of a piece of paper per day. That freaked me out too but I did the math on it and it would take roughly six months for this to resolve. Other than the slight disability (I could only lift that arm with assistance from my other arm - so doing laundry, hanging clothes, etc all was sort of a different kind of chore), I pretty much didn't let it affect my life. Although I do remember being utterly disgusted when looking at it to the point it would make me want to throw up.

Anyway, guess what? At almost exactly 6 months, the winged scapula went away. Wow, those doctors sure know their stuff! In reality, and looking back and knowing what I know now - I realize how deluded I was by the doctor's guidance and that it was TMS working me all along.

 

[momar]

Interesting thread.

On the subject of nerves and healing, and also "what doctors say" - I'll add my anecdote.

When I had my hip surgery 8 years ago (all TMS related - different story, different thread), I had a number of "complications" coming out of that surgery. One of the very oddest was a "winged scapula." (Google it) One day, driving home from somewhere I reached up to hit my garage door button and my right arm suddenly felt like I was holding a 10lb dumbbell. When inside I noticed that when I lifted that arm, my scapula (back shoulder blade) would "wing" out and protrude - the other side, my left side, was fine. Alarmed (to say the least) at my next doctor visit I showed them the symptoms and they said it was "winged scapula" and that it was the result of nerve damage to the "long thoracic nerve" that signals the scapula/blade to lay flat against the back.

How did my nerve get damaged? Who knows! but the doctor said it was likely related to my surgery and could've occurred when they were transferring me unconscious from the surgery table to another table/gurney etc. But don't be alarmed because it usually resolves itself as the long thoracic nerve will heal but only at the rate of a depth of a piece of paper per day. That freaked me out too but I did the math on it and it would take roughly six months for this to resolve. Other than the slight disability (I could only lift that arm with assistance from my other arm - so doing laundry, hanging clothes, etc all was sort of a different kind of chore), I pretty much didn't let it affect my life. Although I do remember being utterly disgusted when looking at it to the point it would make me want to throw up.

Anyway, guess what? At almost exactly 6 months, the winged scapula went away. Wow, those doctors sure know their stuff! In reality, and looking back and knowing what I know now - I realize how deluded I was by the doctor's guidance and that it was TMS working me all along.

So interesting isn't it !!!
Imagine if you had worked out it was to be 2 weeks - wonder how this would have played out. Hindsight also is funny at times.
I know of some cases where something major happened and one year to the day later - the eprson got TMS stuff ping up.