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Trigeminal Neuralgia and MRI results

Discussion in 'General Discussion Subforum' started by Patrisia, Aug 6, 2019.

  1. Patrisia

    Patrisia Peer Supporter

    Hi all,

    I am pretty familiar with TMS and was able to cure my back pain thanks to this program.
    However, that was years ago. I started suffering electrical shocks on the left side of my face in February and atypical dull pain that was located somewhere around my teeth 24/7 - could not point out where it was coming from. I was going through a particularly stressful time in January - looking for a job, accepting a job I didn't like etc. I went to get my wisdom tooth pulled thinking it was that but that did not help. My emotions kept escalating and I was becoming more stressed about my everyday life, job, everything, while the pain kept appearing and then dissapearing, only for it to become permanent one day. It became clearly localized in one tooth eventually and I thought it's the molar tooth. The endodontist said that even though the tooth was previously root canaled, he will perform another root canal as there is some bone loss on the CT scan and a possible infection. The root canal of course did not help relieve the pain and I was at a loss. I did not even bother going back to him as he said everything looked fine and my oral surgeon mentioned this could be trigeminal neuralgia. The pain got so bad I could not sleep and ended up at the neurologist. She put me on tegretol and ordered MRI. The medication helped very little and the MRI shows an artery touching the nerve. However, there is many people whose artery is touching the nerve and they do not have any pain. She said the medication should help but most likely I'll need a surgery. When I asked her what is this caused by she says it's my anatomy and the way the nerve and artwry touch.
    This doesn't make sense - there was never any pain and now all of a sudden my anatomy is causing this? Additionally, many people get this result on MRI and the surgery is performed only for the pain to come back. My intuition is telling me this is TMS as it also jumps on the other side of my face from time to time and/or affects my whole upper row of teeth.

    I do understand TMS is not related to structural changes but in a lot of trigeminal neuralgia cases the MRI shows the compression of the nerve by the artery. What is your outlook on this?
  2. plum

    plum Beloved Grand Eagle

    Sweetheart, I “have” atypical trigeminal neuralgia (type 2) with a dash of TMJ thrown in for a good measure. Like you my understanding of TMS helped me get a grasp on the mind~body aspect ahead of time so I have not careened down the nightmare path so many neuralgia suffers plunge onto.

    I write a bit about this in My Story which you may want to take a look at.

    Some years ago, before I really grasped the TMS concept, I challenged Sarno and his work a lot. Those posts are still on this forum circa 2013 I think. I had exactly the same questions as you, and a couple of others (such as why did Sarno not mention the trigeminal motor nerve which is the main one affecting me).

    Honestly there are way, way too many facial pain and neuralgia related woes that fail to yield to any form of conventional medicine BUT do respond to gentle methods including psychotherapy. This of course puts it firmly in the TMS ballpark.

    I am aware of the Janetta Surgery (named after the man who pioneered it). He has a high success rate with it. Other surgeons don’t. I’m certain that his great skill aside, he possesses a compassionate authority that may inspire a placebo. The failure rate in TN surgery is obscene.

    I actually believe the great work of Dr. David Hanscom is much more effective and appropriate to TN. I mention him in My Story. His book and approach were the healing turning point for me.

    I firmly believe TN is TMS.
    I believe the nerve compression is exactly the same as the disc compression/bulging disc that Sarno discusses at length.

    I think TN is a particularly brutal and intimate type of pain, and one so severe that if only for some relief, most people resort to opioids. Along with my doctor I made a choice to never do this. I never take anything stronger than paracetamol and a glass of wine when it is really bad. (And Sarno himself even suggested that.)

    I think too that the intensity of the pain and the fear it can invoke make it too challenging for many people to then go on to face their emotional self. It leaves you so ragged and exhausted that it is all you can do to get through the day in one piece. Again, I refer to David Hanscom and his suggestion to begin with calming an oversensitised nervous system. Then you can turn towards the psychological element.

    Hope this helps,

    Plum x
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  3. Patrisia

    Patrisia Peer Supporter

    @plum that's what I thought! Thanks so much for responding, I saw your previous posts on this topic yet I still have to read your story.
    Sometimes it's very scary for me to think about the fact that I have something that can't be treated by the modern medicine and also the fact that there is not that many people out there who understand facial pain. I do realize that it's my responsibility to get better so I am definitely working on it. I do have triggers, such as brushing my teeth, but I found out that the best way to deal with them for me is just going straight at it. So I do brush, floss and eat like I always did. I do have spikes of pain at that time but it's getting easier the more I do it. I am on medication that doesn't seem to do much even though I have been taking it for a month. So I am on my own with this pain but I do feel more confident and comfortable with it every single day.
    Lizzy and JanAtheCPA like this.
  4. Patrisia

    Patrisia Peer Supporter

    Also, thank you for the suggested readings!
  5. plum

    plum Beloved Grand Eagle

    I totally understand that. It used to scare me but I found that the more I delved into mind~body healing, the more reassured I became, especially by advances in neuro-psychology which completely support my own experience and the work of Sarno. So while modern medicine doesn’t have a pill to pop, modern neuroscience does endorse the many techniques that calm the nerves. There is great comfort to be derived from that.

    Challenging triggers is such a huge aspect of healing and probably the thing I found most difficult. All I can say is that it does get easier and gentleness is always a good thing. Also, I never push through when the pain is bad. It’s too much. At those times I let the nerve calm, be that overnight or over a longer period of time.

    These days I’m generally pretty good. Not 100% pain free but I am in the midst of a very stressful situation and all things considered my nerve is behaving itself quite well. This is something that still delights and amazes me.

    I don’t know if you’ve read a book called “Striking Back (The Trigeminal Neuralgia and Face Pain Handbook) by George Weigal but it’s pretty interesting. It does lean into the medical side of the equation a lot but it is open to alternative methods and such. According to Amazon I bought it in October 2013 which tallies with the time I was struggling so much with the diagnosis and whether it was TMS. It helped me orient myself and my healing in those early days. I mention it for what it’s worth.

    Do look at David Hanscom though.

    Plum x
  6. plum

    plum Beloved Grand Eagle

    No idea why that post is in blue but it is mighty pretty :)
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  7. Patrisia

    Patrisia Peer Supporter

    @plum it's wonderful that we can relate to each other because of the same condition. I have healed my back pain previously through Dr Sarno but it took 2 years of my back pain to discover TMS and another year until I became completely pain free. It still comes back but very very rarely. It's funny because I didn't even realize when the pain went away - I became so good at not giving it my attention that when it did go away I did not realize until after a while (and that's probably because someone mentioned back pain in the conversation).
    I do believe Dr Sarno's theory about supressed emotions but I also developed my own theory that has helped me realize what brings on the pain. It is when I lose touch with my body and soul and deny them what they really need. It is when I let my ego do the decion making in my life. For example, I was not listening to my body's need for sleep for almost half a year. I was not listening to my soul rejecting the job I was doing to the point I would be having panic attacks at the job. Since I didn't listen and kept poisoning my body and soul, the pain came to my life because the body and sould could not handle the way I was treating them and not listening to them. I was able to lower my pain to a certain level by just quitting the job I hated. When I did try to return to the job (that's after a 2 week hiatus and before I even quit), the pain came back with a vengeance. I found it very interesting.

    Either way, I am a typical TMS sufferer as before the back pain I suffered 24/7 headaches back when I was 18. I also went through a period of terrible panic attacks.

    I am sure we can fight the atypical TN too!
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  8. plum

    plum Beloved Grand Eagle

    Totally agree with your thoughts on neglecting body and soul needs. I also believe that we all, privately if nothing else, actually know why we have TMS. These are often things we would never give voice, even to a journal entry which silently speaks volumes.

    Over the years I’ve exchanged in rich and humbling correspondence with people and that exquisite burning secret is always there. And I think this is beautifully human. It’s the endless damping down of it that screws us into pain.

    There is redemption though.
    We can distill and manifest the tenderest versions of our dreams even if they be a thread of gold in nightmare times.

    This is the challenge and blessing of TMS.

    As you so wisely say, we have to listen to our emotions, our pain, our souls. This is sacred work.

    I’m guessing that besides being a typical TMS sufferer, you are also highly sensitive, creative and empathic.

    Here’s to everything beautiful xx
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  9. Patrisia

    Patrisia Peer Supporter

    @plum I want to thank you so much for showing me the right path. I have been reading David Hanscom's book - halfway done, I have been spending time on the sun and swimming a lot, long walks and a lot of sleep. I already feel so much better. But David Hanscom's book was even better than Dr. Sarno's - I learned so much about myself, his insights are so valuable. How have you been doing these days?

    Sending lots of hugs!!
    Sita, JanAtheCPA and plum like this.
  10. plum

    plum Beloved Grand Eagle

    Delighted to hear you’re doing so well, so quickly sweetheart. Hanscom is fabulous isn’t he. He also posts here under The MindBody blogs area and many of his posts are fascinating especially if you have a creative/artistic bent. I enjoy his take on things.

    I’m doing well :). I find a deep, long sleep calms the nerve like nothing else but mercifully it plays up rarely these days. Generally I sleep like a lamb so that helps.

    Keep taking care of yourself my dear. Feel free to jump back into this thread if you need any help or support in the future.

    Plum xxx
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  11. JanAtheCPA

    JanAtheCPA Beloved Grand Eagle

    Somehow your whole post was picked up as a hyperlink to your profile! I can fix it or leave it - your choice. Not a clue how that could happen...o_O

    LOL, I don't remember the recommendation about a glass of wine, but I have no doubt that the good doctor was relaxed enough to imbibe :D. As for the paracetamol, which is acetaminophen in this country, there is a study which determined that popping a couple of Tylenol is beneficial for emotional pain along with physical pain. If I'm having a really bad day, which might only involve my vague dizziness/brain fog, I'll go ahead and treat myself to a strong cup of tea and a Tylenol or two. Later I will go about my business, having forgotten I was feeling bad earlier. Of course, if I find myself doing this again the next day, I know that I've become mindless, and that I have to get back to mindfulness and journaling.
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  12. plum

    plum Beloved Grand Eagle

    Let’s leave it. Who doesn’t love a beautiful act of randomness. And I like blue a lot. :)

    I’m sure he was. ;)

    This may hark back to the tmshelp days. It was mentioned in an interview Sarno gave that I remember reading. Being a huge lover of wine, I was delighted to add that to my soothers. (Actually I think the context was, if all else fails and the day is just a bad one, enjoy a glass of wine, relax, go to bed. Tomorrow is a shiny new day. Yet another example of the compassionate pragmatism I have come to cherish.)

    The benefits to emotional pain as well as physical is very interesting, and is something borne out by my experience. I love hearing a validation of it. You are so right though, these are holding patterns not healing and we do have to re-engage with our mindful techniques. I always find this easier after a good sleep and if a glass of wine greases the wheels then I am happy.

    You know, I just had a huge wave of sadness about Dr. Sarno’s passing. I love that man. It’s amazing to consider that we are here now, discussing his work and his brilliance. God Bless him.
    JanAtheCPA and Tennis Tom like this.
  13. Patrisia

    Patrisia Peer Supporter

    Well @plum it was too early for me to say! As much as I saw improvement of my sleep and my mental state the first week, the second week is hell! I am having trouble sleeping, nights are extremely bad and so are days. I have been barely hanging in there. It got so much worse. I heard this is normal but this is savage - that's all I can say. Both anxiety and pain are through the roof and I am just wondering how much suffering I can handle because these are really trying times.

    I am glad that you feelgood these days though!
  14. plum

    plum Beloved Grand Eagle

    Sweetheart, first of all do what you can to calm this down. Forget about everything else and focus on soothing yourself.

    When I have a bad flare up I rest the side of my face and head on a hot water bottle as I find the heat counters the pain. It has to quite hot to do this. I’ve not found anything that brings the pain down as effectively as this. It usually calms it within a day or two, sometimes it takes longer. Do you know what brings your pain off the edge? Some people find cold is better than heat but the cold is a major trigger for me so I tend to avoid it (that said I have deconditioned myself a lot around coldness).

    I always rest. My hubby makes me a nest of cushions and blankets on the sofa and we watch feel good movies. I take painkillers and come evening I’ll drink wine. It really takes the edge off for me and I know other TN sufferers find this too.

    The good news is for the first week you made a very positive difference and this is a huge breakthrough and a great sign of success. It shows you can beat this. I went through this exact same experience.

    At first I didn’t have a week but an hour or two of relief, and then a morning, and after a few months, a whole day. It was astonishing. Every time the pain came back I was crushed but a small part of me knew I was getting somewhere, albeit slowly. I felt like the inchworm in the children’s song, slowly slowly gaining ground, measuring my healing by moments.

    Flare ups are savage and demoralising but they are also part of healing. Dr. Schubiner (a great TMS doctor), wrote about how fluctuating pain levels are one of the first signs you are beating TMS. So as wretched as this is, take heart because you are making progress. Use this time to rest and reflect upon what elements of the good week really helped you and consider how you can weave them more into the fabric of your daily life. This really is the cornerstone of recovery, making changes for the good that become a part of who we are.

    Sending you much love my darling,

    Plum xxx
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  15. Patrisia

    Patrisia Peer Supporter

    @plum I just miss my life so much and the 'normal' me. I am trying to be strong. Today i went out for a picnic and I drank some wine and spent time with friends and it was amazing. The night before was horrible - with horrible dreams, sweats and pain. The anxiety is beating me to the ground but I am determined to get back to my normal life. I think I am really realizing how amazing my life used to be before this happened.
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  16. JanAtheCPA

    JanAtheCPA Beloved Grand Eagle

    I tend to lose track of who has been recommended which resources, but if you have not yet discovered Claire Weekes, she is THE antidote to anxiety. Her calming, nurturing, and educational little book, Hope & Help For Your Nerves, is my #2 book for recovery, right after The Divided Mind.
    plum and Lizzy like this.
  17. Patrisia

    Patrisia Peer Supporter

    @JanAtheCPA thank you! It is indeed wonderful to realize how many tools we have for both anxiety and the pain. We just have to determine which tool to use at the right time and watch ourselves get better, slowly but surely.
    Balsa11 and plum like this.
  18. Patrisia

    Patrisia Peer Supporter

    @plum and @JanAtheCPA:
    After a week of bad flareups I started to get better rapidly. I was shocked how fast I was able to get back to normal life and how the pain decreased. Even though I am not 100% yet, it definitely helped me confirm the TMS diagnosis. It's very unfortunate that many people on this forum get distracted by SEVERITY of the symptoms or 24/7 pain. This prevents them from truly believing in the TMS diagnosis.
    Aria, plum and Lizzy like this.
  19. aniseday

    aniseday New Member

    Hello, all - this exchange has been so helpful to me. I was suffering with facial pain after a horrible dental experience that led to a prolonged bone graft/implant placement/crown setting over 18 months instead of the usual 6-8 because of COVID. I don't remember how I happened upon TMS, but it was after the dentist told me there was clinically no reason for me to be experiencing pain and I was just an overly sensitive middle-aged woman imagining the pain (paraphrasing - he didn't use those exact words). I certainly have the TMS personality traits and recognize now I have experienced other TMS issues in the past that immediately resolved once the stressor was eliminated. So, I was convinced this was TMS showing up again - but then I had an MRI to rule out a tumor or necrosis and a vein was found near the nerve root that was "suspicious" and given my facial pain in the TN area of the face I was given the Trigeminal Neuralgia diagnosis. The unconfirmed but "possible nerve compression phenomenon" set my doubt in motion. How can I have TMS if they found an "anatomical" cause of my pain? This thread is a lifeline! So far I have not felt the electric shock like pain usually associated with TN - just have a constant ache which is sometimes accompanied by pins/needles sensation or itching in my face or jaw. I have been put on Carbamazepine and learned I am allergic to it. I was then put on Gabapentin and as they kept increasing the dose because my pain wasn't impacted by it at all but I started developing pins/needles in my arms/hands and legs/feet. So they lowered my dose and then added Bacolfen - which I am currently still taking. My pain has not changed at all...unless I am gardening or doing something I enjoy and am distracted. Then I don't notice the pain at all. (Classic TMS, right?) I was feeling like my body was rejecting the meds because I don't really need them. Then the MRI. Then I felt like I needed to stay the course with the prescribed meds because the doctors have told me this pain will just get worse over time and in my case MVD surgery is only successful 50% of the time...and "successful" may mean a best-case reduction of pain by 50%. Have the doctors ever considered the suicide factor of this disease is due to the fact they paint such a horrid picture of the life to come they put the patient in a spiral of depression? Thank goodness for the internet so I can be exposed to these additional points of view...otherwise I don't think I would be able to get out of bed. Not because of the pain - but because of "what's the point" thinking given the future outlined for me. Although they did try to soften that at the end with a "but every patient is different" and an offhanded comment about some patients do go into remission with or without medication. So - with some additional resources found here (Dr. Hanscom and Dr. Weekes) I am going to continue to work at getting to root cause so I can resolve the pain and will have a conversation with my physician about eliminating these drugs since they aren't work and increasing them has only caused side-effects that I feel are worse experiences than the pain itself. I am working on trusting my body/my belief that like a bulging disk found on the MRI a suspicious vein near the nerve root doesn't mean its the actual cause of the pain. It is just a finding the physicians can use to halt their investigation of the source of pain - it is the evidence needed to give me a definitive medical answer. I have nothing life-threatening. I have TMS that is presenting as TN. Grateful to know I am not alone. Grateful to know there may be some wine in my future! ;-)
  20. JanAtheCPA

    JanAtheCPA Beloved Grand Eagle

    Absolutely awesome post, @aniseday, thank you! Everything you're discovering and everything you're saying is so right on. In fact it fits perfectly with a podcast I listened to just yesterday which is associated with my favorite meditation app, which is Ten Percent Happier. The podcast guest was Christian Wolfe, and the episode was all about pain and mindfulness and meditation. It starts out a little slowly, does not initially appear to address what we call TMS, but it gets into the concepts very quickly and I highly recommend it!

    Feel free to check out my profile for a list of my favorite resources. Claire Weekes was the second author who saved my life, and Dr. Gabor Mate was the third, and I think you would love him.

    Good luck, and keep posting to keep us posted!


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