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Is my (atypical) trigeminal neuralgia TMS?

Discussion in 'Support Subforum' started by ANewJoe, Apr 5, 2020.

  1. ANewJoe

    ANewJoe New Member

    (Sorry in advance for the novel, once I got started i couldn't stop)

    Hi, I wanted to kinda introduce myself and my struggle. In 2016 i observed that i had developed chronic pain which had suddenly just appeared in my back one day. Long story short, at the time I got an mri done and when it came back, there was next to no indication that I had anything structurally wrong with me and I've carried this pain with me ever since. I've gone through physical therapy, etc and I could get some temporary relief, but nothing lasting. (My back pain feels like my upper back muscles are in extremely tight knots, the muscles are almost always seized up, except when I first wake up)

    Cut to right present day, I've now got another form of chronic pain that seems to be ailing me. It appears to be atypical trigeminal neuralgia. My journey with diagnosing this condition has been ongoing and very slow. The pandemic has made getting in touch with a neurologist difficult, but i did get a ct scan back in January which came back negative of anything noteworthy. Since then my confidence in that scan has wavered, "what if the ct scan had missed something?" I'd think to myself. It's been truly frightening. I've scared myself to death over this subject over and over.

    The ATN pain came on around the beginning of January as a constant nagging pain above my left eyebrow. As it wore on, my anxiousness grew, and I've been misdiagnosed one after the other; headache, sinus infection, migraines, cluster headaches, etc. Well after some more panic attacks, it's gotten worse, (hard for me to tell if this was progressing on its own or from the stress) it's starting to spread to my teeth. This pain is also not partial to one spot, sometimes it's along the brow, the forehead, the teeth, the top of my cranium. Also, I've got this sound that eminates from what seems to be focalized on the left side of the forehead that sounds kinda like carbonated beverage or otherwise a powerline on a rainy day (at its most intense, it's a kinda buzzing sound). These sounds scare me to death to this day. Sometimes it will stir me awake at night and keep me up till dawn.

    I recently was put onto the idea of tms theory and was intrigued, the chronic back pain part seems highly relatable. But the ATN part has been a subject of scrutiny (in my mind). I want more than anything to believe that both of my ailments are related to tms. I'm a highly anxious person and have sufferred many panic attacks over the years. I'm critical to myself and doubtful to myself. I spend a lot of time thinking about either "what's happened", or "what might happen", and rarely about "what's happening currently". You could definitely consider me a chronic worrier. But I'm stuck in this spot where I don't know if I can believe my ATN is in fact tms until I meet a neurologist and probably not until i can get an mri. One of my reoccurring angsts is the idea that I have a tumor inside me causing all of this and it's such a hard thought to shake, especially when i put no faith in my ct scan.

    It could take months until i get an mri. But I'm desperately looking for affimation that i am in fact safe from true harm, and that i can put my all into tms treatment and work on my mental health. I have noticed that my ATN flares up most often when I'm under a lot of stress. I absolutely have an overactive nervous system because I've literally driven myself to feel sick many many times in the past (and now). I would like to get over my back pain too, but at this moment the thought of a life with a condition as severely painful as ATN is so absolutely horrifying to me.

    Any insight would be appreciated. Really, I think I'm set on still meeting with a neurologist, etc. But i also don't want to continually catastrophize over and over until i get some sort of final confirmation. I just recently started therapy, and my therapist definitely sees my overactive nervous system as a problem keeping me from happiness and wants to work with me to reduce it's negative impact on my life (since it's being so high alert all the time)

    Sidebar, i have browsed this forum and sought other sources for information on tms. Meditations have indeed been very helpful to me. I find i talk to myself with a pessimistic voice all the time and need to work on that. As i said earlier, i want to be able to fully commit to the idea that my pain is 100% tms, but i wanted an opinion on whether I'm making that call too early until i see the neurologist. (Which feels like forever from now)

    It feels like my hesitancy is holding me back from freedom.

    Thank you,


    P.s. Coincidentally, both my back knots and ATN pain are on my left side. Wonder if thats at all meaningful.
  2. plum

    plum Beloved Grand Eagle

    Hello Joe,

    Rest assured, atypical trigeminal neuralgia is TMS. If you read ‘My Story’ you’ll see that I struggled tremendously with it, and especially with believing that it could be TMS. I’ve experienced all you describe...the roaming pain, the weird sounds, TMJ, burning mouth, neck, shoulder and upper back pain and knots, misophonia, migraines, eye pain, shooting pain (of the electric shock variety more common with typical TN... and on it goes. Mine is on the right. In mind~body healing the right side is viewed as masculine whereas the left is viewed as feminine. That may be something to ponder on. For me the TN coincided with my husband becoming very ill and I became his carer so there is some substance to the idea.

    Until recently I’d made great progress and considered myself pretty much cured but I am suffering a resurgence due to the whirl of stress and tension the pandemic is inflicting on everyone. This is actually yet more proof that it is TMS.

    The thing is TMS healing can only help you. It can’t cause any harm or compromise your recovery so while you are waiting to see a neurologist it’s a really good idea to invest some time on the emotional component of your condition. Every kind of face pain responds well to psychotherapeutic intervention and every kind of pain has fear as a major problem. The beautiful thing about TMS healing is that it helps you break the fear cycle.

    There’s a great book called ‘Striking Back’ by George Weigal which is devoted to overcoming all types of facial pain. I found it incredibly helpful in the early days. It isn’t a TMS book but it does include some chapters on self-help which are fabulous. The overall message is that you can manage and overcome the pain.

    I hope this is helpful to you.

    plum x
    ANewJoe likes this.
  3. ANewJoe

    ANewJoe New Member

    Thank you Plum!

    I read your story, and it sounds like you know exactly what I'm going through right now. These last few weeks have been hell, after learning about this condition (ATN) and the googling about it, I got the life scared out of me that this was going to dominate my life. It's been so turbulent, someone who I met on Facebook who also has ATN put me onto the idea of TMS theory and I've been reading as much as I can about it since then.

    I don't normally get compelled into believing a theory like this, but having had this unexplained back pain for so many years actually made me relate to it more than the ATN has. But reading your story and a few others on here has given me some relief in knowing that this too is also TMS. The thoughts I've noted in my post are all my lingering doubts that have repeatedly popped up as I started working on myself and trying to come to terms with the TMS conditions. The scarcity of information about what physically causes ATN in the medical community seems like an even bigger hint that this is something to do with the nervous system.

    I like in your story about how getting back to nature was the biggest help in your journey. TBH, I've allowed my back pain (and my fear) to dictate my life over these years and my relationship with nature has dwindled a lot because of it. The one thing that makes me hopeful about this journey is learning to undo my habits of talking so negatively to myself and show myself some love and compassion. Meditations have been helpful at brushing away a lot of my doubts, but these thoughts have an unfortunate way of creeping back in on aregular basis. So I've been trying to have some mantras to reassure myself and to keep me going.

    I will definitely be looking into the reading materials you've provided here and in your profile. I'm hungry for new techniques to help inspire and condition myself to accepting a life where pain does not dictate my actions. I've read some of Alan's courses already and I think the true trick for me will be to not wish the pain away, but to truly accept my circumstances and be at peace with them and myself. That's going to take a lot of work, but whenever I'm feeling doubtful I'm grateful that I can find inspiration on this forum and your reply. It really feels like a weight off my shoulders simply accepting my condition as TMS.

    Thank you,
    plum likes this.
  4. plum

    plum Beloved Grand Eagle

    Joe, you’re more than welcome. Precious few sufferers of TN end up here which is a terrible shame given, as you may have already discovered, there is very little the medical profession can do. My doctor is delighted that I “manage it so well”. Lucky for me he cares very little for the opiates and I’m grateful because in my darkest days I would have taken anything to stop the pain. I’ve only ever taken paracetamol. This is important because painkillers only offer symptomatic relief. This is where TMS healing really comes into its own.

    There’s another sweet soul on the forum who recently overcame TN. Have a look at posts by @Patrisia for some more inspiration. Honestly though, it actually makes little difference where your pain manifests because the road to recovery is the same.

    So, welcome to the forum and please feel free to ask any questions. Enjoy the beautiful Spring sunshine!


    plum x
    ANewJoe likes this.
  5. plum

    plum Beloved Grand Eagle

    ANewJoe likes this.
  6. ANewJoe

    ANewJoe New Member

    Amen! I've indeed seen people not ready to entertain their TN as TMS. I myself have been feeling like I just needed that affirmation from someone whose done this all, before I was ready to accept it. I do hope that this is something that gains notoriety over time.

    My doctor's response to all of this was to simply prescribe me a carbamazapine regimen. In no way do I want to be glued to such a drug if I can help it, this pain has been bad, but I've been able to endure it. So far my biggest hurdle has been all these thoughts that it's getting worse, or going to get worse. I feel like I can work through this without meds (except maybe a Tylenol here or there when it's really bad).

    I've got all the tell-tale signs of this condition, and I'm going to commit 100% to it. Either way, as you said, working on this sort of thing can only help. It's time for me to embrace the idea of not needing to be in control and actually being present in the moment.

    I managed to get out and go for a nice long walk this weekend and yes i felt pain, but it felt so good to do it. It's making me realize all these things my anxiousness has deprived me from all these years. This is what I love most of all in the concept of TMS theory, yes there's pain, but you can still be active and still be present. Of course it's such an early stage for me and my demons still come back and haunt me frequently. But I have felt more at peace when I accept that I'm not in control and practice outcome independence. That's something I would have never learned had I not started reading up on TMS.


    P.s. I just downloaded 'Back in Control'. Will be reading it over these next few days.
    Last edited: Apr 6, 2020
  7. Patrisia

    Patrisia Peer Supporter

    @plum thank you for tagging me in this thread! @ANewJoe welcome! Yes, ATN is indeed a form of TMS. I have been a member of this forum since August last year and just like you I went through a very rough patch - to the point I wanted to end my life. Imagine how desperate I must have been! @plum was here to help during my early days and I am grateful for that!

    My story is long but to keep it short: I got my MRI and there was an artery touching the nerve. They wanted to make sure there is no sign of MS or a tumor. Tumors are very rare, rest assured. And even then, they are benign. To cite one of the medical sources: "Tumors of the face involving the trigeminal nerve may also cause pain, but it would be unusual for pain caused by these tumors to be typical of neuralgia." (http://fpa-support.org/wp-content/uploads/2016/09/FPA-Quarterly-2011-Winter.pdf). It is more likely that they would find an artery/vein touching the nerve on MRI than anything else. Even then, the nerve touching the artery is NOT the source of pain. Tons of people are recommended the MVD surgery (which is a form of brain surgery) and tons of them have pain than returns eventually. It's as successful as a back/neck surgery. On top of that, the MVD surgery can be pretty risky as some people temporarily lose hearing (+ other terrifying side effects).

    I decided to not get the surgery and I also decided to stop my carbamazepine prescription. Slowly but surely I tapered off the carbamazepine and surprise, surprise! The pain kept getting better with the TMS work despite my lower doses. Eventually, the pain went away completely but not without the symptom imperatives. The symptom imperatives ranged from clogged ears, to ear pain, to wisdom tooth pain/abscess type of pain, root canal tooth pain upon biting, tooth sensitivity, swelling of gums, headaches, panic attacks and OCD. The days I had OCD, I had no pain. The days I had pain, there was no OCD. And I could go on and on about the variations... Some days and some nights I would be scared shitless. Some nights I would stay up until 6 am crying because I was in so much pain and terrified. My health anxiety was through the roof. All I could think about was pain. And if it wasn't pain it was something else that I would be obsessed about that would terrify me (essentially it served the same purpose).

    The original pain came back eventually, during a stressful time - family issues (back in February). Ever since, it has been compounded by the tension caused by the world crisis. However, the pain comes and goes and is nothing compared to what it was last year. I know how to handle it. I got my life back and I keep learning everyday what works best for me. I took up dancing classes (virtual) and I am learning French. I try to not read the news too often. I cook something new everyday. I use the Curable app. I connect with family and friends. I listen to music and drink wine with my fiance. And life is good!

    TMS is real and it can make you feel powerless. It is not an easy thing to beat. Psychologically, it will be one of the most challenging things that you will ever overcome. But you will get to know your true self more than ever before!
    ANewJoe likes this.
  8. Patrisia

    Patrisia Peer Supporter

    Also, I am currently working my way through "The Presence Process". Will keep you all posted on that!
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  9. ANewJoe

    ANewJoe New Member

    Thank you @Patrisia, I've really been so frantic these last few months until this point. We're kindred spirits in our health anxiety. It truly has been something distressing me for longer than I can remember. I was a very worrisome kid, teenager, and adult. After learning about TMS, it's small wonder how I got to this point. That temptation is almost always there to simply spiral downwards over every little pain and sensation. I've only just started all of this, But I can already feel that weight being lifted off of me by accepting this as a psychological disorder. To me, it makes this journey much more bearable. The mind is malleable, always, that is something I've understood for a long time now. But it's also extremely stubborn, which I can definitely attest to.

    As of these last few days, I've altered the structure of my life in a way I have never done before, confronting my anxiousness (vs resisting it), talking aloud to myself with reassurances and mantras, meditating, learning as much as I can about this condition and how to cope with with it, writing down my thoughts at least once a day, and the most important, going outside. All of these has already given me a much more positive mindset. The writings have I think allowed me to slow down my thoughts a bit, my mind races all the time into things that have happened, and things that might happen. I've been doing more to allow me be more present in the moment and that has been aided by getting outside. The sounds, the smells, all of the senses pulling me out of my thoughts and into that moment. I feel so very lucky to have found this early in my ATN symptoms. I was actually able to go for a walk yesterday and in that time, I slowly stopped paying attention to the pain, it was weird, I actually began searching for it, wondering where it went, and was elated in that moment. Of course it did eventually return, But it reinforced my confidence in all of this.

    I now have a better understanding of how this works, and what to expect, which also takes some of the air out of these sensations when I get them. The knowledge is so powerful. Of course, I've got plenty of worries other than pain that will likely keep the pain around until I can get my nervous system to a calmer state. It gets easier and easier for me to believe how TMS effects the body. My therapist has also been very helpful with all of this, we are doing weekly session via webcam and we're really delving into my anxious tendencies and how I can better manage them.

    Like you, I've also had a lot of angst over the current pandemic, I've pulled myself out of the airwaves entirely, it's simply too toxic. I had several talks to myself over it, and I have taken the stance that I've got enough awareness to be as safe as I'll ever be about it, and have just accepted that we'll cross that bridge when, or if, we get to it. I think this whole thing has added a lot of stress to everyone's lives, would not be at all shocked if it triggers more TMS in people across the planet.

    I'm back to feeling optimistic again, of course it will likely be a struggle going through all of this, with highs and lows, but I've got a purpose now, to live free and untethered from pain, anxiousness, and depression. And I now know that I myself possess all of the power to make that happen.

    Currently I'm dealing with an issue where I'll wake up at around 3 or 4am and get this tinnitus sound in my head that triggers a sense of worry. It's been slowly getting better I think, in that I'm coping with it better, my hope is to reach a place where it does not trigger me anymore and I can fall right back to sleep. I can tell where my nerves go when my conscious mind isn't working to ease the tension, because I'll wake up with this sense of angst a lot of times. it takes a little while to get it to subsides after waking. I've been going to bed meditating on safety with hopes that the message will eventually sink into my subconscious. We'll see.

    Last edited: Apr 7, 2020
  10. ANewJoe

    ANewJoe New Member

    Please Do! I am actually very interesting in any reading materials related to this kind of therapy. I'm glad that it's a growing branch of mental health, because I've noticed that everyone's journey and what works for them seems to be different, depending on their situation and how they process their emotions.
  11. ANewJoe

    ANewJoe New Member

    Hi, @Patrisia and @plum

    I recently was able to meet with a neurologist, and I did my best to convey to him everything that has been going on with me these last few months. It was over webcam, since the pandemic makes in person appointments more risky. Anyways, after recounting my story, he said that he didn't hear anything that makes him think that I have something serious enough to warrant additional screening past my CT scan (such as an MRI). He wasn't inclined to think what I have is trigeminal neuraligia either, in spite of having several of the symptoms that mirror it.

    One part of me is relieved, yet another part is super hesitant to let go of my lingering worries that I've harbored these past few months. I wanted to get you insight on this, since you've both gone through this journey. a licensed professional, actually, a few licensed professionals at this point have said they don't think I have anything structurally wrong with me, and my worry seems to be contradicting their words at every turn I make. My dilemma is, I wonder if I should be pushing for this MRI which probably will show me nothing worthwhile, all because I carry these anxious thoughts with me that something remains unseen. but I don't have any of the symptoms that suggests anything serious, other than this constant facial pain I'm dealing with. It feels kinda defeating in a way to think of these things. the pain spurs me into action, and now that I'm faced with the idea of no longer needing (nor wanting) to act in pursuit of the medical route, I feel an intense amount of rebellion around that very thought. This facial pain has become my new fixation. and I really just want to rid myself of all doubt that this isn't anything other than a TMS disorder.

    Do either of you think perusing an MRI is worthwhile at this point? @Patrisia I read your post again about how very rare tumors are the cause of such pain, and I try my best to take it to heart. To be very honest, I'm quite exhausted with myself. I've been reading "Back in Control" and the road map is all there that TMS is what I have, and my instincts are just pushing me away from acceptance of anything, which I feel is needed to go down this path. it feels like as long as I carry these lingering doubts, I won't be able to move on. In spite of this, I've already started to journal and exercise, and meditate, etc. my journaling lately has been mostly about all of this doubt I've instilled in myself and how frustrated I am that I cannot move beyond it. I suppose I've been hammering these desperate thoughts into myself these past few months, so they may not disappear right away. I'm hoping very much to reach a point of calmness, yet it often times feels so far away.

    Sorry if this sounds so negative, my hope is that continuing with the TMS work will pull me out of this so long as I keep at it.

    Thank you,
    Last edited: Apr 16, 2020
  12. Patrisia

    Patrisia Peer Supporter

    Hi @ANewJoe!

    I completely understand how you feel. Here is an excerpt from a Harvard medical article: "If necessary, your doctor will order a magnetic resonance imaging (MRI) or computed tomography (CT) scan of your head to check for blood vessel abnormalities, tumors pressing on your trigeminal nerve or other possible causes of your symptoms."

    It seems like your neurologists are correct. There is no additional testing needed since the CT scan is satisfactory. There are only 3 things they are looking for: multiple sclerosis, tumors and nerve touching an artery or vein. Tumors are obviously structural but that would be already seen on the CT scan. CT scan would most likely reveal MS but maybe MRI is better for that. Either way, MS patients suffer from TN in later stages so you would already have other signs of MS. Additionally, MS is an autoimmune disease and current medicine doesn't have an explanation for it. I am not sure if TMS community is open to treating autoimmune diseases via mindbody but I do know many people that reversed their MS symptoms once looking at underlying psychological causes and traumas.
    Now on to the third one: nerve touching the artery or vein is a NORMAL ABNORMALITY. It is a coincidental finding on MRIs and CT scans that has nothing to do with pain you are experiencing. This was the hardest part for me to understand since just like you, it made me think of my diagnosis as structural. @plum explained to me, during the early stages, how ineffective facial pain surgeries are (just like back surgeries) and how the herniated disks are the nerves touching the artery equivalent.
    In conclusion, the third option on MRI/CT doesn't even reveal anything except it scares the patient shitless. The patient will be put on anti-seizure meds and and will be encouraged to schedule an appointment with a neurosurgeon. Down the rabbit hole he goes!
    If I would be you, I would stop seeking more answers from the medical community and focus on TMS full-time. Take the neurologists at their word and be happy that they are not prescribing anything. You do not want to experience the side effects of these anti-seizure/anti-spastic meds that are usually prescribed. All I can remember is that I could not walk straight, commute to the office without falling over on my way there, experiencing crazy sweats and nightmares...
    But be aware! Once you fully immerse yourself in TMS healing, you may find out the symptoms get worse before they get better. Do not let that discourage you. My posts on here perfectly showcase my ups and downs and the long path to recovery. Definitely worth it though!

    In the next post I will attach the link to The Harvard medical article for reference.
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  13. Patrisia

    Patrisia Peer Supporter

  14. ANewJoe

    ANewJoe New Member

    Thank you @Patrisia ,

    If I'm being honest, I think you are correct on the whole. There's no reason to believe a Dr. would steer me down a wrong path, they are typically eager to treat ailments like this if they can. I think I've exhausted just about everything I can. Which ultimately is good, but I'm seeing very clearly that I have my work cut out for me accepting this new narrative to my story. My angst has pushed me into this reality that's very hard to navigate out of.

    The neurologist was very willing to prescribe me the meds you'd described, but I'd ultimately turned those away, and he did not challenge it. I'm going to continue working with my therapist and do the TMS work. I just hope that the message about TMS will be able to sink in upon repetition. I hope I am right in thinking a good number of people start this route with some doubt in mind but manage to push pass it to acceptance by sticking to the work.
  15. deny

    deny Peer Supporter

    How are you?

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