numb/tingling face: Myofascial Pain Syndrome

B

bntrunnelle

New Member
Hello,
I have read plenty of forums on this website, but this is my first posting. I have decided to share my story as it has forever changed my life, and I feel as if most medical professionals I came across were puzzled by my symptoms.

One year ago, a week after I applied for physical therapy school, the lower left side of my face started tingling as I was studying for an exam. This sensation immediately worried me, and I went into a mode of extreme fight or flight. I could not shake the feeling that something was insanely wrong with me. Then my face and neck began to feel very numb (sensory, not motor). I could feel intense pressure coming from my neck muscles. The next day during my exam, my whole head was tingling, and I could not even focus because I was so concerned about what I was feeling. I made a doctor's appointment, and he sort of brushed me off initially because I am young and active, and appear very healthy. He told me all my tests would probably come back negative, and to my complete surprise, they all did.

I was on and off muscle relaxers for six months. Tizidaine was the most effective in reducing my symptoms, but I stopped taking it when I discovered the book 'Mind Body Prescription.' I tried every physical treatment possible, and all reduced my symptoms initially, but I realized this was most likely the placebo effect in place.
I tried:
-cervical pillow
-cervical traction
-physical therapy
-chiropractor
-acupuncture
-massage
-CBD cream, lidocaine patches, tiger balm
-cortisone injections and pills
-trigger point injections
-dry needling
-heat and ice
-biofreeze/Cooling Agent and Stretch
-magnesium supplements

After ALL of this, in my worst moments in early March, I could not even get out of bed to go to work because my symptoms shifted to my right side of my face and neck and were very intense. I feared that every movement I was making was contributing to my symptoms, and I was so scared I was going to end up with permanent nerve damage. I restricted myself from sitting in certain positions, driving in a car seemed to be a trigger, and my waitress job at work. Initially, I believed this to be an overuse injury of my neck muscles since I carry plates on my left arm at work. However, once my symptoms shifted to the other side, I questioned how that was even possible. I searched on google '100% cure from myofascial pain syndrome' because I could not accept that I was supposed to live with this for the rest of my life. I found an article about a woman's recovery and how it sounds so crazy that a book helped her eliminate her chronic pain. At first, when I heard the concept of repressed rage, I felt as if this could not apply to me because nothing in life ever truly makes me feel angry inside. I felt far from being an angry person. I lacked understanding at this point and later began to realize and understand the concept at a deeper level.

When I first began reading 'Mind Body Prescription' I developed really intense back pain for about two weeks. I tried to reason that it was because I was laying in bed all day and that I have not been as active. I truly felt as if my body was breaking down. When I learned about the symptom imperative, I then began to realize that is exactly what my back pain was and it subsided. Then I developed jaw pain, and chest pain that I used to have even returned. This experience fascinated me.

I learned that prior symptoms I had to myofascial pain syndrome, were somehow all mind-body equivalents and ultimately connected. My TMS symptoms all began during my senior year of college. A time period of increasing pressures and I dedicated almost no time for myself. I pushed myself relentlessly, and then my body began to speak to me in a way that I did not understand.

My main symptoms:
(2018-2019) Had random tinnitus in ears occasionally
(March 2019) At 4 am studying for an exam one day, I developed severe chest pain that lasted for 5 months.
June 2019 (started developing random benign rashes when studying for a graduate exam)
September 2019 (developed myofascial pain syndrome)

Before all of this, I did not consider myself to be an anxious person. I always can remain calm in every situation and am often stoic and people often tell me they have no idea what I think of them. The driving factor in my life that made me anxious was college and getting accepted to physical therapy school, and this led me to push myself relentlessly. I would consider myself to have perfectionist tendencies, where I expect a great deal of myself and am constantly trying to better myself. I strive to be the best in every area of my life, and often accept challenges because I enjoy pushing myself. I would not say I show myself much compassion, as most of my accomplishments never seem to be enough for me. I am always working towards the next thing and repressing emotions along the way to prevent them from getting in the way of my success.

My question is, how am I supposed to ultimately change this and eliminate my symptoms? I understand so much of this information as I read upon it daily and have implemented it into my everyday life. I understand acceptance is huge and acknowledging the reservoir of rage. However, if I feel I am more successful by not being emotional, how am I supposed to learn to feel these emotions? Sometimes I am not aware of the emotions I feel, it is very hard for me to decipher.

Does it sound as if my symptoms are being caused by my personality qualities and not showing emotions? Or life pressures or core issues? Or all of the above contributing?

I am working on the life pressures aspect because I am trying to release the things I cannot control and give it to God. I feel though as if my personality is hard to change because part of me likes that I am not emotional because I feel the people who are emotional are in a sense weak. It is a really weird belief and I am sure it is something from my childhood that has engrained this in me.

I have got to a point where my symptoms are typically 50% better :D
I have also completely reduced my symptoms for up to a whole week several times the past few months, which makes me more than grateful.

When my symptoms return, is it often due to a trigger of a subconscious emotion? Or an overly sensitized nervous system that still needs work through processing unfelt emotions?

Any sense of feedback would be appreciated, I apologize that this is so long.
 
bntrunnelle said:
At first, when I heard the concept of repressed rage, I felt as if this could not apply to me because nothing in life ever truly makes me feel angry inside. I felt far from being an angry person. I lacked understanding at this point and later began to realize and understand the concept at a deeper level.
Click to expand...
This is one of the most common issues we see - and it absolutely goes hand-in-hand with the very common inability to get in touch with deep emotions.

bntrunnelle said:
Before all of this, I did not consider myself to be an anxious person. I always can remain calm in every situation and am often stoic and people often tell me they have no idea what I think of them
Click to expand...
That was me, all my life. Typical response: "No, you can't have anxiety! You're a rock!" Well let me tell you, every doctor I ever saw for this, that, or the other complaint - starting from just before I went to college at age 18 - was not fooled. Every single one said "I don't see anything wrong with you other than anxiety (or stress)". So I lived with symptoms coming and going for four decades - until they reached a crisis point the year I turned 60 - which is when I discovered Dr. Sarno.

Look, you are asking some really big questions here. I could spend a LOT of time trying to answer them - or you could make the commitment to do the work on your own, by engaging in one of our free programs. We didn't have Alan Gordon's program when I started this work in 2011, so I did the SEP - but it did the job at the time - and I also have to say that Alan's posts and a couple of his live webinars from back then were hugely influential for me. He is truly the master of getting you to give yourself permission to take the enormous risk that means being open to experiencing your true emotions. It's scary. And it has to be done.

Try them both, see what appeals to you. the SEP is a little more structured, with shorter more straightforward segments, but some of the pages are outdated and have lost their links. A paid (and always updated) option that is somewhat similar to the SEP would be the Curable app, which is pretty popular among those who use it. I supported them with a lifetime subscription and I like to dip in occasionally, and I really enjoy the podcasts.

In doing this work, I only have one extremely important piece of advice with two parts to it:
1) You have to be willing to write - which means doing the writing exercises in the programs. I don't mean formal journaling, I mean just writing shit down. Throw it out, delete the text file, whatever - but you have to get stuff out and into some form of print via your hands. That's the first part.

2) The second part is that you MUST be 100% honest with yourself as you write or do any of the writing exercises in the programs. Whatever you do, do NOT give in to the little voice in your head that tries to tell you "oh, no - don't write THAT down! That's too embarrassing (or shameful, or stupid, or "not important" or some such BS). Hear the voice, ignore the voice, and write the thing down anyway. This is essential. It might not be earth-shattering (chances are it's not at all earth-shattering), but if it's something your brain doesn't want you to write down, it will have some meaning for you and it will relate to the kinds of things you are repressing. Even the littlest things will have meaning.

The programs are:
The SEP: Structured Educational Program
Alan Gordon's Pain Recovery Program (generously donated to our site by Alan!)

I write every night, by the way, and have been doing so since the beginning of 2020 - which turned out to be an emotional minefield, so the daily writing keeps me sane. I scribble on old notebook paper, both sides, and recycle it when it's filled up (I don't live with anyone, so that's a safe option - not that my scribbling is even readable). Nicole Sachs, LCSW is a huge proponent of writing like this - she uses an ongoing text document for her daily writing, but the final save is always a completely blank document - this means that there's no inadvertent temporary backup on her computer for one of her many family members to stumble across - and also no way to revisit old writings, which would be a waste of time and energy.

Anyway, there you go - that's my best advice for proceeding towards recovery. Which you will achieve, because let's not overlook this:
bntrunnelle said:
I have got to a point where my symptoms are typically 50% better :D
I have also completely reduced my symptoms for up to a whole week several times the past few months, which makes me more than grateful.
Click to expand...

You're already well on your way - you go, girl!

~Jan
 
Thank you so much for your response. I appreciate you taking the time to inform me of the methods that ultimately helped you! I will start implementing those in my life as well :)
 
Hi bnrunnelle,

Great posting by you, and great response by Jan!!

I have a couple of remarks.

You know this started when you were under a lot of stress. It is probably helpful to remind yourself of this every day.

You know you push yourself. This is probably a "cause" of your symptoms. Remind yourself of this every day too, or when you notice symptoms. 10x a day would be better.

You know you're getting a lot less symptoms, and good again to remind yourself of this every day. Better this than trying to eliminate or worry about symptoms.

Now, importantly, you don't have to fix you. You can't change your personality, or if you can it can only be slowly in time, as you get more and more clear about the suffering it causes you --and by that I mean the suffering of self-rejection. Sure, it might contribute to TMS, and probably does, but the mind doesn't know this. So the way change will happen is by knowing and feeling the suffering in the way you push and reject yourself. This takes time, inquiry, writing, feeling. Softening your self relationship comes. Self-compassion comes. I suppose it already is happening, even if what you're mostly aware of is this:

bntrunnelle said:
I would not say I show myself much compassion, as most of my accomplishments never seem to be enough for me. I am always working towards the next thing and repressing emotions along the way to prevent them from getting in the way of my success.
Click to expand...

Awareness begins to change this. The fact you're understanding your life this way means it can shift, means that parts of you are aligning to support shifts..,

So don't worry about having to remake yourself. Understanding for your life, and understanding how all the components contribute to TMS will come, especially as you do the programs we have here. It is a huge invitation to deepen your life. And it sounds like you're already having great success. Take confidence. Be patient.

If you can correlate symptom changes with stress, or inner stress, events, relationship stuff, etc. this is helpful. Just gently ask yourself why there "might" be a change, and see what comes into your mind.

Andy
 
Doing better overall. I still struggle with flare ups when they come and it definitely is hard with my symptoms when they are high. Yesterday I got numbness in a new spot on the opposite site of my face... so that should bring more confirmation to me because my symptoms are moving. But I will admit sometimes it is still very scary and it is hard to convince my brain that it is a normal sensation. I partially believe this is because when I was researching my condition in the very beginning, every time I saw numbness and tingling I would see the word 'nerve damage'. It seems that nowhere online believes you can have numbness and tingling and that it can be normal. And since I always felt pressure in my neck from my symptoms, I would see online that "more advanced pinched nerves can cause extreme pressure, this is a sign of a medical emergency" and so I think whenever my symptoms were high back then I could not shake the fear because I was reading online how something was seriously wrong. Something I am trying is completely changing the way my brain thinks. It is really difficult sometimes to challenge a thought and then respond to it differently. But I believe with consistent practice of lowering my danger alarm signal, and by showing myself compassion instead of frustration, that I can beat my symptoms. I am not expecting my healing to be linear, and that allows me to get through even the hardest moments that I experience. :) :)
 
It was also hard when I first looked into TMS because I never really saw too many people who experienced neurological symptoms in their face. This made me feel initially like maybe my situation was different. But I knew it had to be my explanation because all my tests were normal, and everything about TMS made sense to me. I still remember the first time I felt relief of my symptoms after believing in it. Back in April my symptoms were at their worst they have ever been. It was just complete numbness and I was not getting relief. It took a whole month of reading about TMS before I felt any relief of my symptoms. I was watching a youtube video and I remember the speaker said 'Your body will only heal when it is in the parasympathetic state' and those words really spoke to me. Because I realize how my body is always in the fight/flight. How much pressure I put upon myself to heal. How I would always look at a calendar and think it has been months. How my curiosity about my symptoms could have potentially been a bad thing but I forgot how to live without my symptoms. Here's a link from the youtube video I saw that initially took my symptoms away for two days! This was a big sign of hope for me.
 
Hi, I've been reading this forum for a few months and this is my first time posting.
I hope that my story gives you a little hope.

I'm now 58 and was diagnosed with trigemminal neuralgia over twenty years ago. About 11 years ago I had a microvascular decompression, which is a surgical procedure where a piece of teflon is inserted between the trigemminal nerve and an artery in the brainstem.
It worked like magic for seven years and I was just like other people, leading a normal life - pain free.

Then it suddenly resurfaced but ten times worse than before, I ended up under the care of two separate neurologists as I was now diagnosed with TN, cluster headaches and migraine all interacting and triggering each other. I was off work for six months that first year and put on pregabalin and amytriptyline, which initially helped. Roll on the years, still on medication (and taking months off work, each year) but now having steroid injections into multiple sites on my scalp, trying all sorts of different (horrendous) medications - none of which worked.
The year before last I decided to go to a CBT therapist and when talking to her one day, I said 'I just want to get rid of the pain' and she replied 'Which one?' clearly referring to the enormous stress that my family was causing me (mum, dad, sister).
Over the years I've just put up with the pain (such a trooper) but this last year I'd been secretly wondering whether there was an emotional component driving it - but felt so ashamed at the possibility that I shelved the thought. After all, I'm a coper - the person that everyone turns to to solve their problems.

This year, I had a massive flare up from January - March and was signed off work. Desperate, I found a testimonial on the 'Curable' website from someone with exactly the same diagnosis as me who was now pain free - and I believed her story! Ever sceptical about people making money from other people's pain and misfortune, I decided to investigate the premise of the app (rather than sign up) and came across Dr Sarno. I immediately recognised myself and began vociferously reading, watching youtube videos and bought into it. This also led me to Dr Mate Gabor and his youtube posts and book 'When the body says no'. Tellingly, when I told my daughter about it, she said 'You're not going to obsess over this now, are you?' - what, me, obsess?!

I started the journaling and it was a revelation.
I realised that I had no idea what my feelings were as I was completely numb. Journaling and Alan's PRP have helped me to get in touch with my feelings, put a name to them and most importantly, stop being frightened of them and allow myself to feel them. As I wrote about an experience, I began to feel nauseous, I focussed on the horrible feeling rather than dampen it down with a cigarette, chocolate or by holding my breath and realised it's not nausea, it's loneliness and then felt a deep sadness, which I realise that together with fear, was the overriding feeling of my childhood.
I now recognise that I was brought up in an emotionally abusive household with occasional physical violence but always living with the threat of it. My mum, I can now see, had undiagnosed anxiety and narcissistic characteristics, whilst my dad seemed permanently furious.

I have been pain free since March and feel that I am really breathing for the first time. I really believe that my dis-ease was caused by repressed emotion and feel a liberation in acknowledging this. I no longer feel ashamed of it being TMS but am grateful that it has given me a shake up. A way of sorting my life out and discovering the authentic 'ME'.
 
bntrunnelle said:
Hello,
I have read plenty of forums on this website, but this is my first posting. I have decided to share my story as it has forever changed my life, and I feel as if most medical professionals I came across were puzzled by my symptoms.

One year ago, a week after I applied for physical therapy school, the lower left side of my face started tingling as I was studying for an exam. This sensation immediately worried me, and I went into a mode of extreme fight or flight. I could not shake the feeling that something was insanely wrong with me. Then my face and neck began to feel very numb (sensory, not motor). I could feel intense pressure coming from my neck muscles. The next day during my exam, my whole head was tingling, and I could not even focus because I was so concerned about what I was feeling. I made a doctor's appointment, and he sort of brushed me off initially because I am young and active, and appear very healthy. He told me all my tests would probably come back negative, and to my complete surprise, they all did.

I was on and off muscle relaxers for six months. Tizidaine was the most effective in reducing my symptoms, but I stopped taking it when I discovered the book 'Mind Body Prescription.' I tried every physical treatment possible, and all reduced my symptoms initially, but I realized this was most likely the placebo effect in place.
I tried:
-cervical pillow
-cervical traction
-physical therapy
-chiropractor
-acupuncture
-massage
-CBD cream, lidocaine patches, tiger balm
-cortisone injections and pills
-trigger point injections
-dry needling
-heat and ice
-biofreeze/Cooling Agent and Stretch
-magnesium supplements

After ALL of this, in my worst moments in early March, I could not even get out of bed to go to work because my symptoms shifted to my right side of my face and neck and were very intense. I feared that every movement I was making was contributing to my symptoms, and I was so scared I was going to end up with permanent nerve damage. I restricted myself from sitting in certain positions, driving in a car seemed to be a trigger, and my waitress job at work. Initially, I believed this to be an overuse injury of my neck muscles since I carry plates on my left arm at work. However, once my symptoms shifted to the other side, I questioned how that was even possible. I searched on google '100% cure from myofascial pain syndrome' because I could not accept that I was supposed to live with this for the rest of my life. I found an article about a woman's recovery and how it sounds so crazy that a book helped her eliminate her chronic pain. At first, when I heard the concept of repressed rage, I felt as if this could not apply to me because nothing in life ever truly makes me feel angry inside. I felt far from being an angry person. I lacked understanding at this point and later began to realize and understand the concept at a deeper level.

When I first began reading 'Mind Body Prescription' I developed really intense back pain for about two weeks. I tried to reason that it was because I was laying in bed all day and that I have not been as active. I truly felt as if my body was breaking down. When I learned about the symptom imperative, I then began to realize that is exactly what my back pain was and it subsided. Then I developed jaw pain, and chest pain that I used to have even returned. This experience fascinated me.

I learned that prior symptoms I had to myofascial pain syndrome, were somehow all mind-body equivalents and ultimately connected. My TMS symptoms all began during my senior year of college. A time period of increasing pressures and I dedicated almost no time for myself. I pushed myself relentlessly, and then my body began to speak to me in a way that I did not understand.

My main symptoms:
(2018-2019) Had random tinnitus in ears occasionally
(March 2019) At 4 am studying for an exam one day, I developed severe chest pain that lasted for 5 months.
June 2019 (started developing random benign rashes when studying for a graduate exam)
September 2019 (developed myofascial pain syndrome)

Before all of this, I did not consider myself to be an anxious person. I always can remain calm in every situation and am often stoic and people often tell me they have no idea what I think of them. The driving factor in my life that made me anxious was college and getting accepted to physical therapy school, and this led me to push myself relentlessly. I would consider myself to have perfectionist tendencies, where I expect a great deal of myself and am constantly trying to better myself. I strive to be the best in every area of my life, and often accept challenges because I enjoy pushing myself. I would not say I show myself much compassion, as most of my accomplishments never seem to be enough for me. I am always working towards the next thing and repressing emotions along the way to prevent them from getting in the way of my success.

My question is, how am I supposed to ultimately change this and eliminate my symptoms? I understand so much of this information as I read upon it daily and have implemented it into my everyday life. I understand acceptance is huge and acknowledging the reservoir of rage. However, if I feel I am more successful by not being emotional, how am I supposed to learn to feel these emotions? Sometimes I am not aware of the emotions I feel, it is very hard for me to decipher.

Does it sound as if my symptoms are being caused by my personality qualities and not showing emotions? Or life pressures or core issues? Or all of the above contributing?

I am working on the life pressures aspect because I am trying to release the things I cannot control and give it to God. I feel though as if my personality is hard to change because part of me likes that I am not emotional because I feel the people who are emotional are in a sense weak. It is a really weird belief and I am sure it is something from my childhood that has engrained this in me.

I have got to a point where my symptoms are typically 50% better :D
I have also completely reduced my symptoms for up to a whole week several times the past few months, which makes me more than grateful.

When my symptoms return, is it often due to a trigger of a subconscious emotion? Or an overly sensitized nervous system that still needs work through processing unfelt emotions?

Any sense of feedback would be appreciated, I apologize that this is so long.
Click to expand...


Hey there,

How are you feeling now?
I am experiencing the same issues with some pain also, which does not seem to be trigeminal neuralgia as it's milder and it happens in both sides of the face. I do still have face tingling and numbness on a daily basis unfortunately.All tests came negative - I have done loads of blood tests + a brain mri . I am thinking also about having a spinal mri, did you get one of those?

Hope you feel better soon,
Alexandra
 
AlexandraIonita said:
Hey there,

How are you feeling now?
I am experiencing the same issues with some pain also, which does not seem to be trigeminal neuralgia as it's milder and it happens in both sides of the face. I do still have face tingling and numbness on a daily basis unfortunately.All tests came negative - I have done loads of blood tests + a brain mri . I am thinking also about having a spinal mri, did you get one of those?

Hope you feel better soon,
Alexandra
Click to expand...

Hii!
I am doing pretty well :) Sometimes I will still have flares (Christmas Day for some reason) and it will make me question how it is possible for symptoms to sometimes come back with such an intensity. It truly is a fascinating process. But I remind myself that I must stay resilient because overtime I have gotten sooo much better. It has been almost two years of myself doing this work, and at times during flares I still find myself wishing my symptoms could go down and hyper focusing on them. At times, I recognize that my immense fear of my symptoms at the beginning is my default response to them when they come on, and I am still working at changing my brain! But there's less pressure now :) When my symptoms get really bad, there is so much pressure in this one part of my neck and my left eye will swell pretty bad only on one side. This is hard, because not only will I feel bad but I will also hate the way it makes me look. Although I notice probably more than other people, feeding into this definitely contributes to keeping the symptoms alive.

Something else to note- I used to always have a plan for my symptoms to go away. I always said and told myself they had to go away before I started grad school. Now I am going on my second semester of grad school, still occasionally have symptoms but occasionally do not :D I highly recommend looking at the 'curable' Facebook page and instagram page because their posts have helped me immensely. Trying to heal on a schedule puts the brain on even more alert, and shows the brain that this symptom is dangerous (fear being the thing keeping the symptoms alive). Also, something else that really helped me was a podcast I was listening to called "Why do we pay attention" on Spotify. It was based on neuroscience and talked about how our brains auto default to the thing we consistently think about. Meaning the more we think about something, the more our brain keeps creating that signal. This is so true for chronic pain/symptoms. I know this so well. Sometimes even though I am aware my symptoms are safe, my brain is just so fixated on them and what the symptoms will do next. To simply sit with my symptoms, breathe, and move on has been extremely CHALLENGING but also extremely rewarding because my improvement is something that has occurred over time. It has taken so many times being uncomfortable to finally feel a little more comfortable with the sensations. I think because I also eliminated the timeline to heal, I appreciate my body a lot more :) I look at the sensations as reminders to prevent me from going at 100% and an association that I can ultimately unlearn.

Something else that got me thinking the other day that is extremely relevant. When I used to not have symptoms, my thoughts were so different. I used to be more in the moment, daydream more, and think more about my past interactions with others and events. I noticed with chronic symptoms, it makes me a lot less present because I am so fixated on this sensation that my whole thought process is different. This got me extremely interested and I started looking up chronic pain associated with lower memory retention and to my surprise there was a lot of articles on this. So another REALLY good tactic- is to actually force yourself to recall an event that is important to you and remember what it looked like, who you talked to, how you felt. And notice how your mind will wander to your symptoms. But keep pressing and think about this event in detail. Or if you go on a walk in nature, really notice the environment around you and fixate your attention on objects to where you are able to describe them. This technique really grounds me. It pulls me into the moment where my symptoms will try to pull me out of the moment. You have to live as you are symptom free BEFORE you are symptom free, and a huge way of this is to live like you used to before you had these symptoms. And it all starts with your thoughts and beliefs on pain.

I have so much to say about this topic because it so important to me :)) I could literally talk about it all day because it has been the biggest learning experience I could ever have. Also when I began grad school and moved to a different state, I noticed my symptoms in my face were not horrible like they used to be, but other symptoms have popped up. I get random bouts of tingling in my arms, my legs, reoccurring chest pain at times, and blurry vision. My old self would honestly be so scared by these symptoms because they are quiet frightening. But I tend to look at these new symptoms and it's easier for me to laugh it off more (they always go away almost immediately) so it shows how my nervous system is changing overtime. The key to overcoming your symptoms is RESILIENCE. Your body is working to protect you and I can promise you it gets better and it can sometimes take longer than you may like or want but you have to believe in your body's innate ability to heal because it WILL :D I wish you the best of luck, feel free to keep messaging me because I will always be able to answer questions if you have any! Also just read the last part of your question. All my tests were normal. CT scan of neck and brain. MRI of neck and brain. EKG of arm was abnormal high up where I have muscle tension (this is expected because in myofascial pain syndrome there is abnormal readings of trigger points found on EKG). But ya every test was always normal, despite the intense muscle tension in my upper neck.
 
Eureka said:
Hi, I've been reading this forum for a few months and this is my first time posting.
I hope that my story gives you a little hope.

I'm now 58 and was diagnosed with trigemminal neuralgia over twenty years ago. About 11 years ago I had a microvascular decompression, which is a surgical procedure where a piece of teflon is inserted between the trigemminal nerve and an artery in the brainstem.
It worked like magic for seven years and I was just like other people, leading a normal life - pain free.

Then it suddenly resurfaced but ten times worse than before, I ended up under the care of two separate neurologists as I was now diagnosed with TN, cluster headaches and migraine all interacting and triggering each other. I was off work for six months that first year and put on pregabalin and amytriptyline, which initially helped. Roll on the years, still on medication (and taking months off work, each year) but now having steroid injections into multiple sites on my scalp, trying all sorts of different (horrendous) medications - none of which worked.
The year before last I decided to go to a CBT therapist and when talking to her one day, I said 'I just want to get rid of the pain' and she replied 'Which one?' clearly referring to the enormous stress that my family was causing me (mum, dad, sister).
Over the years I've just put up with the pain (such a trooper) but this last year I'd been secretly wondering whether there was an emotional component driving it - but felt so ashamed at the possibility that I shelved the thought. After all, I'm a coper - the person that everyone turns to to solve their problems.

This year, I had a massive flare up from January - March and was signed off work. Desperate, I found a testimonial on the 'Curable' website from someone with exactly the same diagnosis as me who was now pain free - and I believed her story! Ever sceptical about people making money from other people's pain and misfortune, I decided to investigate the premise of the app (rather than sign up) and came across Dr Sarno. I immediately recognised myself and began vociferously reading, watching youtube videos and bought into it. This also led me to Dr Mate Gabor and his youtube posts and book 'When the body says no'. Tellingly, when I told my daughter about it, she said 'You're not going to obsess over this now, are you?' - what, me, obsess?!

I started the journaling and it was a revelation.
I realised that I had no idea what my feelings were as I was completely numb. Journaling and Alan's PRP have helped me to get in touch with my feelings, put a name to them and most importantly, stop being frightened of them and allow myself to feel them. As I wrote about an experience, I began to feel nauseous, I focussed on the horrible feeling rather than dampen it down with a cigarette, chocolate or by holding my breath and realised it's not nausea, it's loneliness and then felt a deep sadness, which I realise that together with fear, was the overriding feeling of my childhood.
I now recognise that I was brought up in an emotionally abusive household with occasional physical violence but always living with the threat of it. My mum, I can now see, had undiagnosed anxiety and narcissistic characteristics, whilst my dad seemed permanently furious.

I have been pain free since March and feel that I am really breathing for the first time. I really believe that my dis-ease was caused by repressed emotion and feel a liberation in acknowledging this. I no longer feel ashamed of it being TMS but am grateful that it has given me a shake up. A way of sorting my life out and discovering the authentic 'ME'.
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I just read your story today Eureka,

Thank you for sharing this. Profound. If you have not already, and you get this message, I might suggest you cut and paste some of this and create a success story in the Success Story subforum. I think it could help many others. And add tags so it is searchable, if you can.
 
bntrunnelle said:
Hii!
I am doing pretty well :) Sometimes I will still have flares (Christmas Day for some reason) and it will make me question how it is possible for symptoms to sometimes come back with such an intensity. It truly is a fascinating process. But I remind myself that I must stay resilient because overtime I have gotten sooo much better. It has been almost two years of myself doing this work, and at times during flares I still find myself wishing my symptoms could go down and hyper focusing on them. At times, I recognize that my immense fear of my symptoms at the beginning is my default response to them when they come on, and I am still working at changing my brain! But there's less pressure now :) When my symptoms get really bad, there is so much pressure in this one part of my neck and my left eye will swell pretty bad only on one side. This is hard, because not only will I feel bad but I will also hate the way it makes me look. Although I notice probably more than other people, feeding into this definitely contributes to keeping the symptoms alive.

Something else to note- I used to always have a plan for my symptoms to go away. I always said and told myself they had to go away before I started grad school. Now I am going on my second semester of grad school, still occasionally have symptoms but occasionally do not :D I highly recommend looking at the 'curable' Facebook page and instagram page because their posts have helped me immensely. Trying to heal on a schedule puts the brain on even more alert, and shows the brain that this symptom is dangerous (fear being the thing keeping the symptoms alive). Also, something else that really helped me was a podcast I was listening to called "Why do we pay attention" on Spotify. It was based on neuroscience and talked about how our brains auto default to the thing we consistently think about. Meaning the more we think about something, the more our brain keeps creating that signal. This is so true for chronic pain/symptoms. I know this so well. Sometimes even though I am aware my symptoms are safe, my brain is just so fixated on them and what the symptoms will do next. To simply sit with my symptoms, breathe, and move on has been extremely CHALLENGING but also extremely rewarding because my improvement is something that has occurred over time. It has taken so many times being uncomfortable to finally feel a little more comfortable with the sensations. I think because I also eliminated the timeline to heal, I appreciate my body a lot more :) I look at the sensations as reminders to prevent me from going at 100% and an association that I can ultimately unlearn.

Something else that got me thinking the other day that is extremely relevant. When I used to not have symptoms, my thoughts were so different. I used to be more in the moment, daydream more, and think more about my past interactions with others and events. I noticed with chronic symptoms, it makes me a lot less present because I am so fixated on this sensation that my whole thought process is different. This got me extremely interested and I started looking up chronic pain associated with lower memory retention and to my surprise there was a lot of articles on this. So another REALLY good tactic- is to actually force yourself to recall an event that is important to you and remember what it looked like, who you talked to, how you felt. And notice how your mind will wander to your symptoms. But keep pressing and think about this event in detail. Or if you go on a walk in nature, really notice the environment around you and fixate your attention on objects to where you are able to describe them. This technique really grounds me. It pulls me into the moment where my symptoms will try to pull me out of the moment. You have to live as you are symptom free BEFORE you are symptom free, and a huge way of this is to live like you used to before you had these symptoms. And it all starts with your thoughts and beliefs on pain.

I have so much to say about this topic because it so important to me :)) I could literally talk about it all day because it has been the biggest learning experience I could ever have. Also when I began grad school and moved to a different state, I noticed my symptoms in my face were not horrible like they used to be, but other symptoms have popped up. I get random bouts of tingling in my arms, my legs, reoccurring chest pain at times, and blurry vision. My old self would honestly be so scared by these symptoms because they are quiet frightening. But I tend to look at these new symptoms and it's easier for me to laugh it off more (they always go away almost immediately) so it shows how my nervous system is changing overtime. The key to overcoming your symptoms is RESILIENCE. Your body is working to protect you and I can promise you it gets better and it can sometimes take longer than you may like or want but you have to believe in your body's innate ability to heal because it WILL :D I wish you the best of luck, feel free to keep messaging me because I will always be able to answer questions if you have any! Also just read the last part of your question. All my tests were normal. CT scan of neck and brain. MRI of neck and brain. EKG of arm was abnormal high up where I have muscle tension (this is expected because in myofascial pain syndrome there is abnormal readings of trigger points found on EKG). But ya every test was always normal, despite the intense muscle tension in my upper neck.
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Hi,
I'm just back on this site to reply to something else and have read your January post. Your first sentence regarding a Christmas Day flare up almost made me laugh out loud - with recognition. I'm a TN 'survivor' who can empathise with so much of your journey and thankfully have been pain free for 14 months and am now off all meds.
My worst flare ups were always on the run up to and during the Christmas holidays- coincidentally the time spent with my family (of origin) - with the forced cheerfulness, rigid timelines and palpable tension. Mystery solved.
 
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