Aftermath

Most of you must be wondering where I am at. Well, this is an update. After coming back from Korea I needed some time to lick my wounds and to understand what had happened. Initially, the treatment in Korea had brought me significant relief. But then fluctuations with new symptoms started popping up. And during the last week of my treatment, the symptoms even got much worse. After my return, this trend continued for a while. To my regret and frustration, I had to hold my head with my hands even when sitting in a chair, when typing on a keyboard, or when standing up. Walking was a disaster. Clearly, I was in a much worse state than I was before going to Korea. This wasn’t the desired result, not what I had planned.

By saying that, the cause for the deterioration already reveals itself. I had tried to cure myself within the time constraints of a project, with tasks and milestones. I had applied this method so many times in other situations: set targets, define milestones, write a project plan with action items, and execute the whole thing, being pretty sure of finalizing the implementation on time.

But this approach, or way of life, is exactly what had made me ill in the first place. By rigidly structurizing my life, my actions, and my time, I have been moving through life based on sheer will power. In this regime, there was no room for my actual needs, for the voice of my heart, for my feelings, for my body. This is a consequence of the freeze response induced by trauma. There is no flow. Everything is entirely and rigidly controlled.

So I learned a lesson: it is not possible to cure myself with an approach that had actually previously contributed to the onset of my symptoms! Meanwhile I can laugh about it. I did not see this coming, only started to suspect it by the end of my stay in Korea and fully realized it afterwards.

I also realized another thing: the treatment had been too hard on me. I had received the maximum possible number of treatments in the given time. Most patients who come to the clinic live in Korea and only receive a treatment once in a while. This allows the body to recover from the harsh manipulations. For me that was different. Often, I underwent chiropractic manipulations four times per day. I have come to understand that this has been too much for my body. It gave me the signals to slow down, but I ignored them. Only in the end did I start to see what was happening: day by day I was adding new, incremental trauma to my traumatized body.

Concluding, apart from the valuable insights I gained, the treatment didn’t ‘work’ for me. Yet it certainly does for various other people. I have seen CD patients fully recover with my own eyes. But they had (and took) all the time in the world to recover. That’s the difference with me. They completely let go of any and all pressure. I suppose that in itself should already be enough to recover.

So where do I stand now? I am not cured. But I am still certain that I will be. Since my return from Korea my condition has much improved. By now, my neck is doing as well as before going to Korea, perhaps even better. I experience frequent moments of freedom, and still see a positive trend. I am going strong on the STRC program. I continue with trauma therapy (Somatic Experiencing). My physical therapist has transitioned to “maintenance mode”, which means that I only visit him once a week. I am taking blue-green algae since a couple of months. I am also inspired by Jordi from Barcelona, who has healed himself with proprioceptive exercises. Along those lines, I have started to integrate Qi Gong into my daily exercise routine. And recently I have begun to explore other, new ways to heal myself. I may write about those in the future.

Stay tuned. The journey is ongoing.

94 thoughts on “Aftermath

  1. These are all wonderful insights, CCD. I’m so glad to hear that you’re doing better. Isn’t it amazing how our bodies are trying to tell us what they need, and we usually don’t listen. Instead we do more of the same that we’ve done before, only harder. I’ve had similar experiences over the past year – going full out with physio, exercises, daily schedules, pounding away on my poor body, and coming to realize in the past month or two that this is not taking me where I want to go. I’m realizing that awareness of my body, and of the present moment, is crucial in order for me to get better, and that lack of it is a big part of why I’m in this situation in the first place. In fact it’s not even mainly about getting better any more, but about being completely present to whatever my body is doing, to my “new reality.” There’s a level of acceptance, and peace, that I needed to find and am starting to come to. There may be a message here to allow ourselves to simply be, and experience, rather than try to fix things on our schedules.

    I’m reminded of that popular quote that’s often attributed to Einstein: “You can’t solve a problem with the same mind that created it.” So maybe we INTJs have to learn to use other parts of ourselves!

    Wishing you ongoing recovery,

    Leigh

    • Thanks a lot for your comments, Leigh! I am glad to hear that you have gone through this process as well and gained the same insights. I totally agree that (body) awareness is crucial to us. That will help to normalize our nervous system, our brains, and to recover from trauma. And yes, I am sure that the message is that we need to simply be and experience (actually that applies for all humans). For us INTJ/CD that means we need to drop our schedules and to live with another mind-set – following Einstein’s analogy. It is feasible! I wish you an ongoing recovery as well!

      • Dear CCD.
        I am sincerely sorry that your trip to Korea did not live up to expecations. Long ago, even before I was diagnosed with ST. I learned that one of the great diseases of this society is the demand to hurry, set goals and reach them, and perfectly, by a certain time. That really is a great way to totally lose touch of out bodies and the REAL world out there, and certainly the need and concrns of others around us.. I have seen plenty o people make them selves sick that way, but not cause ST, ever. I am back to argue with you about that. I know from personal knowledge that such hurrying through life and pressuring ourselves wil exacerbate ST and many othe conditions, and may even cause some conditions, but will not cause ST. Nor will it cause a newly diagnosed condition that is causing me more problems, such as terrible balance and vertigo. I saw the images from the MRI I had several weeks ago and the arachnoidal cyst that it showed on the left lobe of my cerebellum—cause unknown. Trauma is one possible cause, but this would have to have been relatively recently, within the last few years, to cause the cyst. I have sustained no physical trauma to my head since I was a child. This is not cancer or at all deadly, and is curable by draining it if it continues to grow. The pace of my life has been calm and very much in touch wioth my body for a very long time. My last paying job was gardening at a Chautauqua. No pressure–in fact LOTS of latitude and encouragement to be creative and do what felt right. Unfirtunately, that did not help my ST, though I was getting specialized massage theray and acupuncture at the time. You do not heuury through those, as you do not hurry through gardening.
        I hope you find your answer, but I wonder that you can talk to people about what you are trying which must cost you a LOT of money that the great majority of us do not have. Why are you in Ankara? No criticim. If you can afford to go there, more power to you. When I was in Greece, I wanted to got to Turkey in the worst way, but the money just wasn;t there to expand our three month trip to that part of the world. Have a wonderful time. There is much to learn in that part of the world—a fascinating region.
        Best wishes, Cynthia Timko

        • Hi Sue,

          Sorry for the very late reply!

          Well, I am not sure what to say to you. I have tried to explain my point of view to you so many times. It seems you do not read or understand what I am saying. Alright, one last try.

          Yes, stress is very common in our world. And of course not all people who have stress, get CD. On the contrary. That is because stress simply isn’t the root cause of CD. I told you this so many times already…

          The mechanism, as I identified it, is as follows.

          CT + INTJ => CD

          I.e., childhood trauma, remaining unresolved, coupled to an INTJ personality, leading to rigid-control coping, eventually leading to CD.

          So you need to have all the above mentioned boundary conditions in order to develop CD. And that is why just a few people get CD!!!
          Stress is just a symptom that arises during the coping phase. So stress is a consequence of trauma, just like CD is a consequence of the trauma.

          Oh, and a few important ingredients for healing yourself are as follows.
          – A good understanding of the root cause and the message of the symptoms. You do not seem to have this. Even though your life has been full of trauma, you deny this and you continue to see CD as some kind of mechanical or genetic problem. It is not.
          – Belief in your own healing. It seems you do not have this belief. You are trying to convince yourself that trauma isn’t the root cause and that responsibility for CD lies outside you. In this way, you also throw away your own power to heal yourself.

          I hope this helps.

          My trip to Korea (now 2 years ago) helped me a lot. It seems you missed that point as well. By observing myself and others, I learned what I needed to heal myself, and what to avoid in order not to make myself sick. So it was a very fruitful experience! And it didn’t cost me anything to go there, by the way. Also, I have not been recommending other people to go there, on the contrary. I have simply shared my experience.

          Finally, I really do not know why you think that I am in Ankara?

          Kind regards,

          CCD

  2. Dear CCD, thank you for the update. I am sure you are disappointed about your experience in Korea, but for sure you gained a lot of valuable information and enjoyed experiencing a new culture. I agree that it was probably just too much for your body to deal with in a short time period. One thing we have learned for sure is that it is a long journey to heal CD. I am certainly not there yet either. I am coping and have, for the most part, stopped blaming myself and feeling guilty that I somehow caused this to happen. I struggled with that for a long time as I think most people with chronic illness do. Thinking if I only changed this or that about my life, it would somehow just go away, or if I hadn’t done this or that, maybe I would have never got it in the first place. I have come to accept that it is much more complicated than that with a multitude of contributing factors. I am still not seeing any doctors or therapists, just doing my daily exercises in order to maintain a stable state. One acheivement I can celebrate is how much less of my day is spent focusing on CD. When it comes to the forefront of my mind, I often find myself surprised about how long it was since the last time I thought about it (I am talking hours here, not days, but it is a step forward). Take care and I am interested to here about the new methods you are exploring when you are ready to share.

    • Dear Carrie, thanks so much for your comments! It appears to be a little quiet on the blog at this moment, so I am very glad to see some “traffic”.
      Well, I wasn’t really disappointed about my experience in Korea. I was a bit frustrated at first, but could easily appreciate that it had brought me a lot of new, valuable insights, which I needed to get anyway before being able to heal myself.
      Yes, having CD is more complex than a flu, but personally I do not see CD as something that should always takes a long time to heal. It could be fast as well. Actually, some people do heal quickly. It is all a matter of mindset. I am trying to piece together the essential parts of the healing process; and the most obvious parts are that healing is a decision, and also something that you need to allow to happen. If you are able to quickly decide and allow healing, then recovery should be quick, I am sure! Now there is a slight problem there, for some of us, since our doctors tell us it is chronic (even if they don’t know much about this condition really, let alone about its cause(s)). If you buy into that view, and make it a firm belief, that will easily jeapordize real healing.
      As for your considerations, it makes no sense to torture yourself with those if-then questions. There is no way you can make a change in the cause(s) and/or trigger(s), because it is already there. So better concentrate on getting insight regarding the cause(s), and on starting to believe in your own healing power. But somehow I think you are well on your way doing that. In any case you have come quite a distance from where you were in May/June!
      I am indeed investigating new ways to heal, and when I am ready, I will write about it! But I can already say that the methods and tools themselves are not so important. Whatever works for you is fine. The most important thing is that you believe in healing and truly allow yourself to heal, which in turn requires unconditional self love…

  3. Hi,
    How were your holidays?
    Mine were at first very sad, my first Christmas contending with CD. I think it upset the extended family to see my neck so bad. But then, I began to realize how many blessings there still are in this world….
    I hope you will continue blogging, even if you are not always encouraged. You write very well, and you seem so dedicated to finding answers. It’s definitely a journey.
    JJ

    • Hi JJ,

      Thanks a lot for your comments! I appreciate it must have been hard to celebrate your first Christmas with CD.

      Are you willing to share more about yourself? Some information about your background, about how your CD started? And did you carefully read the sections Phenomena and Perspectives (in that order) of this blog? It would be great to get your feedback!

      For now, let me say that CD is your friend, passing you a message about the way you have lived your life so far, telling you that it is time to change things. And CD can be cured, I assure you.

      Take care!

  4. I pray that you are right that CD can be cured…
    My CD began in early February of this past year, while I was at hospice with my brother who was dying of esophogeal cancer. I totally believe this was brought on by strain and trauma. I adore my brother, and had been a caregiver for about two years. The night before he died, I was standing before his bed with my heart breaking, and just felt my head start turning to the right.
    For many months, it wasn’t too bad. A jerk to the right on occasion. As we went into autumn, it began worsening, especially when I would drive anywhere. I thought it was just an emotional ‘tic, but mentioned it to my doctor during my yearly physical in August, and she recommended seeing a neurologist. At my appointment with him in October, it had gotten worse, and he could see the yanking to the right, and gave the diagnosis.
    I had a Botox treatment in November, starting at a very low dose, as I’m sensitive to many meds. It helped for only a few weeks, about 50% improvement, I’d say, but also made it difficult for me to lift my head out of bed, and there was a bit of swallowing trouble. Since it’s worn off, I continue to worsen. Now the only relief I get from a constantly bobbing head is lying against pillows, which I’m doing to type this. The neurologist has recommended trying a bit higher dose this coming February.
    The holidays have been hard, but people have been kind. We have a final party for my husband’s family tomorrow, and the anxiety has made my head quite bad today. It will be a two hour drive each way, and then 5-6 hours with the family. Also, back when I wasn’t doing badly, my husband and I made arrangements to travel to Quebec City, Canada for New Years, so we will leave for that early the next morning. Now that feels hugely daunting, but my husband is very supportive.
    Unlike you, I get some relief when I walk. Quebec is a beautiful city, so at the very least, he and I can do some nice long walks together, with alternate resting at the hotel.
    Today I bought a soft cervical collar in hopes it will help a bit, as I notice that tying a scarf around my neck tightly brings a bit more feeling of control. Several people have said that one shouldn’t wear a collar with CD, as it will ultimately weaken the neck muscles, but this feels like the only way I can try to do certain things, like eating in restaurants. That’s always been our joy when traveling, and it would be too sad to lose it.
    I know this is a full body/spirit illness – it feels that way. In September I turned 60, and at the time was joyfully thinking of the new journey I was on… boy, has that been tempered! I’m going into 2013 with both apprehension and hope, knowing that there will be many lessons along the way.
    This site is wonderful – you’ve worked very hard to put it together. Hope you’ll continue your postings.
    Thanks for listening,
    JJ

    • Hi JJ,

      I was very touched to read your story about how you developed CD. I’m sorry to hear about the loss of your brother, and appreciate you sharing this with us. You obviously saw a connection between the emotional strain you were going through and your body – it doesn’t get clearer than that. I’m glad the Botox has helped you. I’ve been gettign Botox since last February and have had mixed results, but I do find a slight improvement with each dose and plan to continue for at least the short term.

      I hope you’ll let us know how you did with all the driving. Being in the car is one of the toughest parts for me right now, and a 5-6 hour drive would be a real ordeal. It’s limited my ability to travel, but I expect things will continue to improve.

      I like your characterizing of CD as a “body/spirit” ilness. There certainly seems to be much more going on than a simple physical malfunction. My CD has been pushing me to improve my body awareness through techniques like meditation, Feldenkrais, and just the practice of mindfulness and self compassion. CCD’s blog has been a valuable resource for me, in particular for the works of Peter Levine on trauma and healing (e.g. Waking the Tiger).

      Another book I’ve recently found that I’ve found really applies to my experience is Full Catastrophe Living – Using the Wisdom of Your Body and Mind to Face Stress, Pain and Ilness, by Jon Kabat-Zinn. He teaches mindfulness in different ways (body exercises, meditation, breath awareness) and also talks alot about how to work with stress, pain, anxiety and fear.

      Nice to meet you, all the best,

      Leigh

    • My best wishes for 2013 to you, JJ! I am sure that in one year from now, your journey will have taken you to new grounds. CD ‘forces’ us to look inside, and this can trigger an intense discovery process – so I have learned.

      Thanks for your ample response. I sympathize with you and understand exactly what you are going through. You do not say much about (childhood) trauma, but I have the feeling that you do see a clear connection between things that you experienced in life and the onset of CD. Your brother’s death was a ‘classical’ CD trigger indeed.

      A little over a year ago, shortly after the onset of CD, I was unable to type anything on my PC without lying against pillows, like you. Now, it is no problem anymore. Walking is still a challenge (so strange that you seem to get some relief, most of us have the worst issues while walking – but then again: everyone is different), but I can do some, while keeping my head straight. Driving my car is no problem anymore, even driving a whole day is fine. Recently I visited some friends whom I hadn’t seen in 5 years. They couldn’t see any change about me, and they were shocked to hear about the spasms that I had until 1 year ago.

      So I would like to ask you to decide to start your recovery now, and to see where it brings you. On this blog you will find numerous ways, techniques, and inspiration that can be helpful. Select the ones that resonate with you the most and get going.

      Enjoy your time in Quebec and stay tuned!

  5. Hi Leigh,
    Thank you so much for this kind reply.
    I am in Quebec City on vacation, but am sad to say I’m not doing well. Don’t know if it’s just the intensity of the holidays, or planning a trip right at the end of them (we did this back when I wasn’t having so much head trouble), but I’m very wrung out, not moving far from the bed, having tummy issues and increased tremors. My husband is supportive, and is off doing a bit of walking while I rest in the hotel.
    Thank you for the reminder of the “Full Catastrophe Living” book. I read it years ago, and found it helpful then – could use it so much more now!
    Will also check out Levine’s book – it sounds good. Thanks for sharing that.
    Have you read the book “How to Be Sick” by Toni Bernhard? That’s the one that has most helped me accept my current situation. She stresses the mindfulness and gentle self-care you mentioned.
    I pray that 2013 will be kinder to us both, and that our next Botox rounds will make a huge difference! Thanks for being there.
    (((HUGS)))
    JJ

  6. Thanks for sharing that you have had such improvement, CCD. That’s wonderful, and gives me much hope!
    And thank you for all the work you’ve done putting this page together. It’s a terrific resource.
    Praying for a happier 2013 for everyone!
    JJ

  7. Hi JJ,

    I’m sorry to year your CD is affecting your trip, I hope you’re able to get out and enjoy Quebec City a bit, it must be beautiful now with snow. It sounds like you’ve had a pretty hectic schedule over the holidays, hopefully you’ll get some relief as things calm down. I had family visiting for a few days, nothing hectic, but still I found my neck was acting up with all the visiting and sitting around chatting.

    Thanks for the book reference, I didn’t know that one but it looks good. I must say my attitude towards illness is changing – not that I welcome it, but I’m coming to understand the futility of a “fight it tooth and nail” approach. I’m glad to hear you’ve got a supportive husband on your side. Sharing your prayers for good progress in 2013!

    All the best,
    Leigh

  8. CCD,
    Thank you for giving us insight into your aftermath! Sorry it has taken me so long to respond I don’t have much time on the internet these days.

    We have all learned so many lessons and your Korean trip has made it very clear we cannot keep making the same mistakes if we wish to heal. Healing cannot be forced and we can no longer live our lives on sheer will power forgetting our own heart and body.

    And if you feel like answering this question if not that is okay, I’m wondering why you have chosen not to wear the YBA mouth piece that Dr. lee sent you home with to continue healing?

    Also I want to ask anyone on the strc if they are experiencing a fluctuation in symptoms, or a morphing of the torticollis?
    I have been on the strc for 6.5 months and I do have several small improvements, but in other ways I feel I am worse. I feel I am still experiencing a lot of fight back, I don’t know if this is normal at this stage.
    I guess I was hoping to be more improved by this time, I still cannot sit or stand unless I am holding my head, driving is still a nightmare.
    It could be my life is very unsettled right now, and a low grade stress is keeping me from improving faster.

    CCD I cannot wait until i am as improved as you, you are doing so well and I am so happy to read this.

    JJ welcome to the blog, life will get better I am sure of that!

    I have missed the blog, but think of everyone daily, I leave you all with a heart warming winter poem.

    I heard a bird sing in the dark of December,
    a wonderful thing,
    so sweet to remember;

    We are closer to spring,
    than we were in September,

    I heard a bird sing in the dark of December.

    by : I forget :}

    • Hi Sunflower, good to hear from you! I was just talking with my husband the other day about how my symptoms have changed. They’re not constant. I had slow improvement for several months after starting botox, physio and the STRC program, then in late fall I had an increase of some symptoms (pulling in back of neck), and my “sensory trick” doesn’t seem to work much now. I’ve been told by the neurologist that CD develops for about five years after its onset, and then stabilizes (i.e., it doesn’t get any worse after that point). So it does seem to be a bit of a moving target.

      But I’m learning as I go – in particular your comment that healing can’t be forced as we try to force other aspects of our lives. I’m learning this lesson while, I hope, continuing to do all I can toward healing, but with more gentleness, and more focus on learning to take a more relaxed approach to my neck and to life overall!

      Wishing you ongoing healing,

      Leigh

      • Leigh,
        Thanks so much for responding, your comment has made me feel better, that a fluctuation is normal.
        I think I may also ask Abbie, just to see what she says.

        Like yourself I try to find that inner peace and acceptance. I feel this is the key to healing and a faster recovery.
        For me though, it is an elusive state. When it comes I try to capture it and hold on to it, but it is fleeting, and just as I think maybe it will finally stay, it leaves me again, never knowing when it will return.

        I have started on my regular meditative practice and I can find peace there, when I am able to settle the wild monkey mind that can’t stop thinking about ways to heal, or about how I acquired the condition or how I could have avoided it and all the mistakes I’ve made…….blah, blah blah!
        I am so sick of the mind so turning inward gives me relief.
        I often think of the woman named Christine who wrote that wonderful strc success story that I have posted on this blog a couple of times. Have you read it?
        She suffered with severe CD for 20 years before finding out about the strc.
        She was recovered within 5 months! So I ponder, how can this be, when most people take so much longer and have suffered it for much fewer years. I think the answer lies in her total surrender of Abbies method. She was so relieved to find the answer after searching for so long, her body and mind were ready to completely relax and completely surrender herself to the method with full confidence and faith.

        So this is what I am trying to achieve, along with starting to peel away the emotional trauma, with methods like SE and Resonance Repatterning. One session of the RR will peel away the first layer, I’m looking forward to it.
        Wishing you continued relaxation towards life which will get you there sooner than later!

        • Yes, peace of mind can certainly be fleeting, though I find that more the more I try to cling to it. You might be right about an attitude of surrender, as in the woman who got well in 5 months. Along those lines, someone just lent me a book called “Radical Acceptance” by Tara Brach which I’m looking forward to reading. But I think we need to have compassion too for the fact that everyone’s body is different, and just because we all have what they call “cervical dystonia” doesn’t mean the mechanism or the cure will be identical in every case.

          I’d be interested to hear what Abbie had to say about your symptoms fluctuating if you want to share it here. In my case, I’ve had to modify Abbie’s program and can’t follow it exactly as certain stretches cause problems for a herniated disk in my neck, so my recovery may be on the slow side as well.

          Good luck with the resonance repatterning, I’d love to hear how that goes. I’m very happy to have found a somatic experiencing practitioner in my area and will be meeting with her soon so hopefully I’ll have good news to report.

          All the best,
          Leigh

    • Hello Sunflowersprout,

      Thank you for your poem! This is a first on the blog! The poem offers a good metaphor for CD sufferers ;-)

      As for the YBA, it is custom made and typically only lasts a very short time (until a fluctuation occurs). There also is the standard mouth piece, the TBA, which I could wear, in principle. But it does not fit my mouth so well, so I decided to stop wearing it.

      Sorry to hear that you still have such fluctuations. There is no “one” recovery path; everyone is different. Personally I believe that we can recover with any method we choose, as long as we truly believe in the method and as long as we truly allow ourselves to heal. So instead of trying to compare your situation with that of others, and instead of trying to change the technical side of your healing approach, I think it would be wise to track and uncover any negative beliefs you might have about yourself and your recovery. You might, for example, secretly believe that recovery is not for you, only for others. If that is the case, you can replace that belief with another one: “if others can heal, so can I”. For example.

      Take care and do stay tuned!

    • Hello, thanks for your message! As a general observation, physical trauma/injury to head/neck/shoulder prior to the onset of CD is a common phenomenon. Personally I have suffered a few shocks to the neck prior to getting the first symptoms. It all fits in the pattern of accumulating, lifelong trauma that culminates in more physical trauma after 30. See the sections Phenomena and Perspectives of this blog.
      Are you willing to share some more about your situation? What is your background? When did you get CD? What were the life events preceding it? What have you done so far to alleviate the symptoms?
      Looking forward to hearing from you again!

  9. Hi CD, I would love to hear how you have been doing. How is the somatic experiencing going? I recently started this therapy with a local practitioner and am finding it very interesting, though I can’t give definite results yet.

    I also was curious if anyone has had problems with their handwriting, and if you have been able to improve it in any way. My dystonia affects my writing hand as well, and I’m looking at either retraining that hand, or switching to the right hand, which wouldn’t be easy, but at least I’m not dealing with tension and tremors in that hand.

    Leigh

    • Hi Leigh, nice to hear from you! I am fine, more or less doing the same as in November, perhaps a little better. In any case, walking has become easier, as well as driving. So yes, still improving. After having done SE for one year I temporarily put it on hold, since I am now exploring new methods. It’s still too early to write about those. But please keep me informed about your experiences with SE! Another visitor of this blog has recently also started SE and he informed me that he finds it a very powerful method, showing him to let go of the rigid mind-driven control, entering the hitherto unknown world of physical sensations.

      I have had no problems with my handwriting. Until some time ago, I did have occasional problems with my right hand. This happened when I let my head hang down and then got up into military position. At that moment my left eye blacked out and I lost control over my right hand. Now that my symptoms are much better, this phenomenon has also (almost) disappeared.

      Do you think you have writer’s cramp? In that case, you might want to look into the method that Dr. Farias in Spain has developed. See: http://www.focaldystonia.net/

      CCD

    • Hello Leigh,

      I had big problems with my writing hand. As it was the 2nd year at medecin university with a lot of things to write down I thought that it was normal. I told myself “that is the reason why most doctors has terrible handwritings”.But it got more and more painful, and my beautiful handwriting turned to an awful one. It was a writer’s cramp, and that happened 4-5 years before the beginning of CD. After university it calmed down slowly, now it has disappeared if only CD could follow ;)
      Happy springtime to all of you

      • Hi Amelia,
        Glad your still around and checking in.

        How are you?, is the botox still making life easier?
        How is the strc, have you noticed a lot of small improvements?

        I hope you beautiful little country is getting some sunshine, I saw that Europe is having some very cold weather still. It is already summer in the desert, happy spring to you!

        take care :)

  10. Hi to those of you still checking in once in a while.

    My upper cervical chiropractor has started with a new massage gadget called “rapid release” It is a tool that looks like a giant electric razor and rapidly massages your neck. It helps to break up scar tissue and adhesions. I had 7 sessions and I believe it has improved my condition. After these treatments which only last 10 minutes I had several “free moments”. and just felt better over all. It has not totally gotten rid of the scar tissue but it has started to break it all down.
    My chiro said 10 minutes of this is worth about 15 regular massages.

    I have improved since my last posting. My head is far from straight but it is beginning to straighten. I can now often drive with 2 hands on the wheel, before this was totally impossible. My walking is so much more relaxed and comfortable, so often I don’t use my hand to hold me straight.
    When sitting or standing totally relaxed my head will turn almost to center, it is not yet “free” when it does this, but before it used to turn sharply to the left and want to continue to wrap around the body.

    Leigh, I don’t have a problem with writing. I never did email Abigail, I guess I started improving and never bothered.
    I had one RR session, miracles did not happen obviously. I cannot afford more at this time, so I will start with the SE on my own.

    Wishing everyone continued improvements!!!

    • Hi Sunflowersprout, so nice to hear from you! Interesting story about this rapid-release device. I think this is the URL, right? http://rapidreleasetech.com/rrt-pro/
      How much would such a device cost? Would it be an alternative to the Kneading Fingers machine? Could you check that with your chiropractor?
      Anyway, it is great to hear that you are now making significant progress!
      Keep it up!

  11. Attention to everyone especially those who live in the USA.

    I’m considering going to see Noel Batten in Atlanta Georgia in May. He is running a special, if I can get another person to go at the same time it would be 1/2 the price for us. He charges around $2000.00 usd for 5 days so if we doubled up it would only be $1000.00.

    I find his price reasonable, but everything else adds up to a lot, like the flight, the hotel, the chiropractic visits with Xrays.

    Let me know sonya@mauiportal.com Dolphin, Leigh, Carrie, you girls live here you may be interested.

    • Hi Sunflowersprout,

      Thanks for the idea. I’m not sure this guy is for me, but I hope you’re able to go, and if so, that he helps you find some improvement. Let us know what happens. If you have amazing results, maybe we will be organizing a group trip to Australia!

      Leigh

    • Hi Sunflowersprout and CCD,

      Sorry for not getting in touch with the blog for long time – I’ve been very busy.

      Sunflower, thanks for the information – but I’m good with what I do now.

      CCD, with regard to your last post about your retrospective insights on treatments in Korea and aftermath, I totally understand how you felt and went over. Thank you for sharing your thoughts.

      I am convicted that the best and fastest way to CD recovery is a combination of exercise and Botox, unless having non-severe symptoms (almost no spasms) or having enough time working on the recovery, which neither of them apply to me. This is how a lot of people with the STRC program recovered, and Abbie also advocates this method. They say that the time between the Botox injection gets longer over time until it reaches to the on-going recovery state. With help of Botox, exercise become much more efficient because it help reduce or stop spasm and almost eliminate bad patterns, so one can focus working on muscles more effectively to create good patterns. After spasm stopped, I feel I increased awareness of my posture and movement, being able to train my muscle, with great control. Botox is not a magic bullet, though. It requires a highly specialized and experienced doctor to get successful results. I can keep go on but will stop here.
      It may take years, but I’m confident that I will attain recovery with this method.
      It doesn’t matter which method to use, but I believe that a combination of reducing (or eliminating) spasm and physical (muscle) exercises will greatly help faster recovery.

      Wishing all the best to everyone!

      • Hi Dolphin,

        Thanks for your post! Yes, I agree that (temporarily) taking Botox can be helpful, because it allows us to experience more freedom, which may reinforce the belief that we will heal ourselves. Like you, I do not believe in one specific method. It is the belief that counts. But true, some methods may be generally more effective than others, because they can be easily understood and/or adopted, reinforcing belief.

        In any case, so good to hear that you are still confident that you will recover. I am also sure of it. Nothing is static for eternity (already because time is a man-made illusion), and that applies to CD as well.

        We will all meet and celebrate when we reached recovery!

  12. Hi Sunflower, CCD, and everyone else, somehow I got an email about a message, but I can’t find the message! Anyhow, it has been a while so I will give you an update. I have been doing fine, about the same as the end of last year, maybe a little better. I ended up going to see an ENT doctor in January just to rule anything out because of the trouble I have had talking and swallowing. He did not see anything, just that my vocal cords were tight, which is expected with the dystonia. He recommended speech therapy or more botox. I opted for speech therapy, but after about four sessions, I am not getting much out of it. The actual speech exercises are easy enough for me, but I can’t figure out how to translate that to regular every day talking. The strangest thing was that when I saw the ENT, he put a tiny scope through my nose and in to my throat and that was actually the only time since my CD started that I have felt completely normal (the scope was painful, but CD gone). He said that was probably what they call a sensory trick. Too bad I can’t leave a camera up my nose all the time ;) So not much luck there. I also had been experiencing some drooping of my eyelid (about once a month for a few hours) and some weakness/pain in my right wrist and hand so my sister who is in the medical field thought I should be tested for myasthenia gravis. So I went to a new neurologist who specializes in that and he tested for it and ruled that out. He pretty much confirmed the CD/Meige diagnosis. But he also tested my levels of Vitamin B12 and Vitamin D. Both came back quite low so he has put me on high doses of both of those for the next few months (just started this week). He seemed to think that may help quite a bit. Since then, I have done some research and have found a few articles that link B12 with dystonia and a ton of information that links both vitamins to neuro issues in general. So we’ll see, worth a shot to see if it helps. I like the idea of taking vitamins much more than botox! A lot cheaper too. I wonder if any of you all have been tested for these? It seems strange to me that my first neuro did not test for these since these vitamins are so critical for proper neurological functioning.

    Other than that, not much new, waiting for winter to finally end here! I took a trip to the Florida Keys last week and that was just wonderful. We rented a house on the beach and just relaxed. I was beginning to think that CD would go away quickly if I was able to stay there as I was feeling quite good by the end of the week. Ah but reality set in and regular life must continue for now.

    Sunflower, unfortunately my current situation would not allow me to leave for a week (family obligations), but I hope you are able to work it out so you can go.

    I am glad to see traffic picking up on this blog again, I like to hear how everyone is progressing!

    • Hi Carrie, thanks a lot for your update and sharing your amazing experience with the scope! Could you tell at which point exactly your CD went away? Was it when the scope was in your nose only, or did it have to go all the way down into your throat until you felt the relief?
      Interesting find regarding the vitamin B. I will look into that as well. In any case, keep us updated about your experience with those vitamins!
      Take care!

      • CCD, it was when the scope was in the back of my mouth, looking down at my vocal cords. The doctor asked me to read a few phrases and I was able to do so with no problem at all, I felt totally normal again. Very strange. I told my sister about this and she said, “wow, so you feel this all day, every day”. I think people don’t understand that when you have CD, it is always present, even if at the moment, you are not having spasms. You can still feel it in your head and in your body. At least that is how it is for me. I will keep you updated on my vitamin journey!

        • Carrie, indeed, that sounds like a sensory trick on your vocal cords. So your speech got normal at that moment. But did your CD also completely disappear then? 100% sure?

          • It was pretty quick process so hard to say I guess, but all I know is that I felt completely normal. My CD is completely linked with speech/swallowing problems so I guess I would say yes it was also gone at that moment.

          • That is very interesting indeed. In my opinion, the sensory trick shows how “easy” the resolution of CD could be. Not in a mechanical way, but in a spiritual way. If we just give ourselves the proper support, it’s all right…

  13. Hi Everyone

    Sunflowersprout, I’m so happy for your that the Rapid Razor is working :) I’m going to look into it. Do you have to go for sessions or is one able to buy one for home use?

    Carrie, thanks for the tip re vit B injections. I remember thinking there might be a connection.

    CCD, I came onto the site after googling Qi Gong. It makes sense to me that our energy may be stuck and if we can get it to flow again it should bring about healing. Your comment “This is a consequence of the freeze response induced by trauma. There is no flow. Everything is entirely and rigidly controlled.” reinforces this for me as I distinctly remember the “freeze” straight after my bike accident and continued for a few months afterwards. Please could you let me know if you have noticed any changes. Also, how’s the blue-gree algae?

    Some of you may remember my vegetarian quest last year. When I decided to become a vegetarian and give up meat, wheat, sugar and dairy. From day 1 for 2 weeks I felt better than I have ever felt in my life in every possible way. I can still ‘feel’ that feeling. CCD, I remember you saying that you thought it was power of intention. I have come to believe that that is what it must have been – it’s not possible to feel the effects of giving up those food sources as quickly as I did. While recently on holiday I read in a magazine that our state of mind/happiness is 50% genetic, 40% intentional (how we act, think and respond to the world) and 10% circumstantial (food, drink etc). I’ve just googled it to get the right wording and found this article http://www.thecollapsedwavefunction.com/2013/01/thoughts-from-my-dad-happiness.html). I think what I experienced was the 40% intentional. The absolute power of the mind and intention :) I’m starting a little book called “Revelations” as I keep coming across these revelations, which I forget a couple of months later. I want to make sure I never forget this one.

    Take care

    • Hi Lee-Ann,

      So nice to hear back from you as well! It seems traffic is picking up again a little bit now! Yes, I think Qi Gong can be helpful to get the flow going again. It is one of the many tools we can use. (And I think it also has similarities with Jordi’s system, Feldenkrais, Alexander Technique, etc.) And yes, the freeze response is what – in the end – led to the onset of our CD.

      I am doing quite well. I am able to do more and more things that I couldn’t some time ago. So there still is a gradual upward trend. I can’t really say which methods are helping me the most. I am taking the blue-green algae, but I beleive they are not my miracle cure. As you know, I am more and more moving away from specific methods and/or technicalities. For me it all comes down to healing trauma, feeling gratitude, (self) love, and attracting the things into my life that allow me to be more and more of myself. That is the best one can do to experience flow and synchronicity. Of course it can be helpful to apply some method, as a kind of ritual (and I am doing that with daily exercise), because rituals can yield a lot of healing power. But it doesn’t really matter much which method you choose, as long as it feels good.

      Ah, so good to hear that you are also moving towards the idea that we shape our world and life with our consciousness. The implication of that is that we have free will. So nothing just “happens to us”, we create it all. From that perspective, genetics are total BS. I do not believe in the mechanistic view of the material world. And in fact, modern physics is also moving away from the primacy of matter. Our space, time and matter are illusions, created and governed by our consciousness (just causing the wave functions to collapse!). So it is primacy of consciousness. If you are interested to learn more about this subject, a nice starting point is a presentation by Peter Russell: http://www.youtube.com/watch?v=-d4ugppcRUE
      So I say: happiness is 100% determined by ‘intention’ (more specifically: beliefs and thoughts). Another perspective on the primacy of consciousness is offered by the Law of Attraction.

      Oh, and it IS possible to change our material world in a split second. If we believe we can do it, we can. There is enough evidence for this. For example, take a look at the story of Anita Moorjani. She had a near-death experience and then understood the primacy of consciousness, and simply decided to heal herself instantly of the cancer that had completely devasted her body. The same thing is possible for CD, definitely. Or any other aspect of our lives we want to change. Well, for now having CD is teaching me a lot, so it seems I hang on to it just a little bit more ;-)

      Keep us updated about your findings!

      • CCD, I’m so glad for you that you’re improving. Just keep doing what you’re doing. Together it’s all working.

        You couldn’t have said what I have finally come to believe better. Anita Murjani’s discoveries were a complete revelation to me. Her words make so much sense (don’t take life so seriously, live life out of passion not fear, always be true to yourself).

        I do however think that it’s especially difficult for us INTJ’s as we like to focus on projects, we are ‘doers’, forward planners and ‘preventers’ and we live more in the future than the present. If there’s a problem, we work tirelessly to analyse and fix it – everything has a solution and we don’t rest until we find it. I find letting go and stopping controlling my life one of the hardest things. It goes against my ‘I have to be productive’ nature. My INTJ logic is how can I achieve my goals if I don’t work at them *regularly/strictly every day* – usually at same time? I.e. I want to become a better painter, learn Qi Gong, do Feldenkrais, the Silva Method, meditate amongst many other things. However, being so rigid and controlling is what we need to stop doing, but then it’s not logical to me to just wait until I feel like doing those things – to me that’s weak.

        Eureka moment – interesting that I used the word ‘feel’ in the last sentence and that I view doings things based on feelings as weak. Maybe we ignore things or are not in tune with things that we *feel* like doing (because we are thinkers) – we override the feelings with what we *think we should* be doing. Hence the inner force and control we constantly exert upon ourselves – in everything little things we do throughout the day. When I just think about all the little rituals before breakfast (exercises, vitamin popping etc etc), before going to sleep (8 different creams, flossing etc etc) etc I get a rigid feeling in my stomach. I’ve always felt (physically) that my neck turning is linked to my stomach. We do all of these things to better ourselves for the future, to prevent things from declining, but we need to stop silently (“silently” because we don’t even realise it is force) *forcing* ourselves to do these things. Doing these things may be good, but maybe we need to stop seeing it as force and see it as free will. “I choose to do these things”.

        Thanks for link re Peter Russell. I agree that genetics are BS. I believe that we have the power to change *everything*.

        • Lee-Ann, glad to hear that my words resonate with you. And yours surely resonate with me. I recognize myself so clearly in the way you describe yourself. Yes, we can be awfully rational and controlling. But we have to understand that this is also the way we are. No need to judge ourselves for this or to reject anything in us. (I have come to dislike judgement in general.) We have used our strong points to survive, and worked around the freeze response in this way for a very long time. Yes, we did override our feelings, stemming from the stresses we suffer(ed), because we did not want to feel the pain. Now we just need to allow flow back into our lives, need to gently release our traumas, learn how to do nothing and still love ourselves (that is the proof of true self love: being able to appreciate ourselves simply for who we are, without requiring some accomplishment first). After that we will be able to use our strong points in a more constructive way, leaving room for the voice of our hearts, doing things out of passion and free will, rather than through force. Amen.

      • Just a thought…I always find that I go off track and become obsessive. I was trying to think of a solution to remind me to be less controlling. Well we have an inbuilt reminder! We can use our constant dystonic movements to constantly remind us to be less controlling in our lives.

        • Definitely. CD is our friend, showing us how rigid and crooked we have/had become, asking us to be gentle and compassionate with ourselves.

      • Hi Everyone

        I want to let you know about an amazing book, which is changing my life rapidly. It’s called “The Chimp Paradox” by the psychiatrist Dr Steve Peters. It’s an easy to follow, enjoyable read which helps you understand how your mind works. It has enabled me to easily become aware of negative/wrong thoughts so that I can change them (input a revised/better thought into the “computer” – you’ll see what mean if you read it).

        I did a Chakra test and all, except intuition chakra, are closed. On this page http://www.stevepavlina.com/forums/spirituality-consciousness-awareness/65159-how-open-chakras.html, “Anagogy” (last message on page, 07-20-2011) says in his opinion “Energy blockages are caused by imbalances in consciousness. These distortions in consciousness are focuses of thought or belief that are not in harmony with the law of one. There are certain thought-forms which are consonant with the law of one, and others that are extremely out of alignment with that interrelated oneness.

        These energy blockages are the cause of all forms of disease. It slows or restricts the amount of prana flowing into your body, resulting in a great deal of disharmony….”
        (read the whole message)

        So, using the books advice, whenever my “gremlin” flares up (ie. road rage etc), I stop and input a new belief into my “computer/database”. By continually reinforcing the new belief, the gremlin is slowly removed and road rage has less and less of an impact on my emotional state. I am feeling much, much better – more light and less burdened.

        He continues…”The benefits of opening your energy centers are infinite, because the universe is infinite, and completely unblocking your chakras results in complete conscious unity with creation. Complete unblockage results in god mode, basically. That’s hard to do, though. Other door prizes include: peace, joy, and the capacity to appreciate a higher intensity of light from intelligent infinity. ”

        I am 100% convinced that my 2 week complete breakthrough when I felt more amazing than I have ever in my life was because I unblocked a/some chakras. I remember writing here that I sensed that one of my chakras had been unblocked.

        It may sound wierd to those of you who don’t believe in this stuff but I really feel like I’m onto something here so try it…

        One other thing along the same lines, which is having the same impact as the book, is Claude Bristol’s videos on youtube. I’ve since found his free e-book at http://www.successmanual.com/free-success-ebook-magic-of-believing-claude-bristol/. Written in +-1948 it focuses on the power of attention, but he has lots more secret, very powerful tips. In one of his utube videos, he talks about the power of looking in the mirror into your eyes (ouch!) and telling you whatever it is you want to happen. For me, my daily phrase is “I love you unconditionally right now” (taken from the free “detox” video which follows the free “Hungry for Change” video http://www.hungryforchange.tv/). A Doctor on the video suggests saying this as in her opinion most of the problems we have come from the fact that we don’t love ourselves. Apparently you actually start developing a “muscle” in your brain when you do this – takes about a month.

        For me, I have proven 100% that we can change this with the power of our minds.

        That’s my 2 cents! Read the book and let me know what you think.

        • Hi Lee-Ann,

          Very nice contribution! Thanks a lot. You are moving along the same lines I am, using different sources though. But I entirely subscribe the things you say. With our beliefs we create our reality. And beliefs can be changed. And sure, chakras offer one perspective/toolset to get out of our rigid-control mode and get into flow. And last but not least: the real key to make all of this happen is unconditional love for ourselves. I learnt that in Korea last year…

          I will look into your materials and get back later.

          Take care.

        • PS, Lee-Ann, I am curious. If you are willing, could you give some example(s) of negative thoughts/beliefs that you identified? How did you identify them? And how did you replace them with positive ones? I am very interested to know!

          • Hi CCD

            My main problem is road rage (blush). The driving Mauritius is atrocious. So when someone stops for some unknown reason in the middle of the road, I have now inputted the belief “Mauritian drivers are unreliable. They don’t know any better. This will never change so accept it and move on.” (something along those lines). Now, when it happens, my chimp checks the database/computer and sees that this is something normal and instead of getting completely worked up, I remain calm and it doesn’t affect me. It really has worked.

            Other examples, I usually get very anxious/nervous at book club when I have to talk about my books. I have inputted the new thought that “My nervousness is an old childhood reaction. It no longer fits me as I’m now an adult and being an adult I can cope with this”. It helped but I need to work on this.

            My husband getting grumpy – usually my mood spirals down. I have inputted the belief that “He hasn’t read the Chimp paradox and doesn’t understand how his emotions are ruling him. I see where he’s at and there’s no need to react”.

            I’ve known for a long time when my triggers are – my reactions were way too extreme. I’d get angry, negative, anxious etc. After reading the book, somehow I am much more aware of my negative emotions before/while they happen and I’m able to input a belief and stop the negative behaviour before it spirals out of control.

            Hope this helps. I have since read this *very interesting article* http://upyourmojo.com/files/ThoughtVibrationUPYourMojo.pdf and in it the author says that we need to affirm every day that “I am asserting mastery over my true self”. I.e. I am not a slave to my emotions anymore. My emotions have become my slaves instead of ruling me. Will make sense when you read it. Chimp Paradox book is number one for me though as it’s helped to distance my emotions from my true self. This is key. The affirmation “I love and accept myself unconditionall right now” also has immense power – you’ll see the effect after about 2 weeks.

          • Hi Lee-Ann, Thanks a lot for your examples! And so nice to see that you are becoming a law-of-attraction specialist as well! I will read the article you sent and see if it adds new insights. One thing I learned, is that the most important beliefs are about ourselves. Not so much about “external” entities. Also, I think it is most helpful to identify those beliefs about ourselves in detail. Did you do that? For example, did you find out which (negative) belief is the basis for your nervousness in the book club? Do you clearly understand why you feel threatened and/or embarrassed by the situation? What does your inner child believe about you?
            And just one more question: how exactly do you “input” a new belief?

  14. Hi,

    I am a new blogger and fairly new to the awful world of CD, since Nov. 2012. Great website and great information! I, like you are determined to heal myself. I have been on a crazy rollercoaster ride since, seeing neurologists, chiropractors (different types), accupuncturists, accupressurists, massage therapists, dentists (TMJ specialists), naturopaths (prolotherapy), torque release treatment. I did have a Botox treatment that made me so sick and did nothing, and I wore a neck brace for quite some time. I have spent thousands of dollars and travelled the country to see some of the specialists. I am very typical, in the fact that I have had childhood trauma, tremendous stress throughout my life, looked after others and had extreme stress prior to the onset of this condition. I feel like my body had enough, and you are right brain and body no longer in unison. Also, prior to this I was having exteme lower back pain for quite some time and was always told my pelvis was out. I also have a jaw that clicks and deviates when opened (was told I should have jaw surgery). I believe that I was physically out of allignment and the stress did a doozy on me.
    I am now too afraid to spend any more money on any other treatments because every doctor, specialist has made promises and none of them have helped. I have spoken to Abigail at the ST clinic and would consider starting her treatments, BUT I do like the glass of wine and find it hard to give up on all those little guilty plessures (occasional pastry and glass of wine).
    I did have 5 great hours on New Years day, no dystonia, no neck pull, I was ecstatic thinking whatever I had I was healed ( I did work with an accupressurist prior to that day), not sure if it was his treatment or me feeling good that day.
    How are you doing? Any new progress? What is working for you? Do you think the Blue Green Algae is working?
    Thank-you for all your great work and looking forward to hearing your reply.

    • Hi Spring,

      Welcome to this blog!

      And thank you so much for sharing your story. Wow, so your CD only started very recently. And yet you have undertaken so many things. It’s truly amazing and shows how motivated you are! Well, thank you for confirming the picture that I have sketched about CD. There is one more important finding that I need to add to the sections phenomena and perspectives of this blog. And that is that we all have the Myers Briggs profile INTJ. From that perspective, it makes a lot of sense that people like us (i.e., INTJs) get CD when traumatized. So the quest for curing ourselves is about getting out of the freeze mode, out of the rigid control mode, into the flow, with lots of (self) love.

      Yes, when we get CD, it shows us that we are off center, out of balance, rigid, and that we cannot orient ourselves flexibly in life anymore. Our necks have this function and now they cannot perform it anymore. Yes, the entire spinal structure is one chain, so lower back, TMJ, pelvis: all are involved and the entire chain generally collapses. But it can be fixed, as anything can be fixed.

      It will be helpful for you to choose some method, e.g. STRC, as long as you believe it will help you. And don’t be too harsh on yourself. I was very strict with the wine in the begining. But nowadays I am drinking wine occasionally. It feels good, and I can allow myself such pleasures. That is also an important aspect of our healing: stop being rigid and overly conctrolled, and start being gentle with ourselves.

      Can you remember what you felt, thought, or experienced just prior to those 5 hours of freedom? I suspect that you were able to appreciate yourself fully at that moment, causing the rigidity to go. Let me know!

      I am still slowly improving, and doing things that I would not have imagined 6 months ago. Walking, sitting, driving, socializing: all have become a lot better. What is working for me: the law of attraction. Primacy of consciousness. See the other comments that I submitted today…

      Looking forward to hearing from you again! It would be great to have a new, contributing member at this blog!

      Take care.

  15. Hi,

    Thank-you for your reply and warm welcome. Yes, the few times that I have felt relief (New Years and recently on a family holiday), were days I felt huge relief from pressures of life. Allowing myself to feel and think freely. I know I have to make some huge changes in my life but I have resisted SOOOOO hard . I use to be a person who got excited when change happened, I always felt like great things were waiting around the corner, and they were-life always got better and better But as I aged, mid-life, those changes started to scare me and I know that I tried to control things way more, that has not worked for me, hence the CD. I am in complete Rigid Control Mode :). I have not trusted God/Universe as much as I use to. I am really trying to do things that are true to my heart rather than living inside my head. i am hard on myself with where I should be in life and then it’s a lot of work keeping up with all of that, I forgot me.

    Here are a few questions for you:

    Were you able to turn your head in both directions or was your neck locked in one position? I find my head/neck always turns to the right but I can turn it to the left but it goes right back to the right.

    How much time do you spend on the excercies a day?

    What is your neck doing now? Is your neck calm, still pulling only certain times, or pulling a certain percent of what it use to? When you say you can walk, drive, sit, how long? Is your neck completely straight? I can drive, walk etc. but have to hold the back of my head or neck to try and keep it straight. I find I can only do things with one hand as one has be free to support my neck.

    I find my socializing has decreased, I love fine food and dining out but I find myself declining dinners often as it is very hard for me to sit without leaning or holding my head/neck.

    If it’s not too much work for you, can you tell me how much time do you dedicate to the excercise, diet etc. per day? Do you take days off from excercising? If so, do you find it makes a differance ie: CD gets worse?

    PS: Glad to hear about the occasional glass of wine, yeh!

    • Hi Spring,

      Thanks for sharing and for confirming the things we are starting to understand about ourselves (with CD) in general. Your self knowledge is advanced, and it seems you can also laugh about yourself. Well, I am sure this is the first and vital step towards recovery. You basically know what needs to be done. You just need to do it (more) now. And paradoxically the key to it is not really about ‘need’ or ‘must'; on the contrary: just let go, flow, appreciate yourself for who you are, follow your heart. And when you have an off day, just tell the people around you “Please back off a bit, as today I am in complete RCM!”

      Ok, as for your questions, let me reply. But don’t take it too literally. Everyone is different. And I believe that any method can work, as long as it feels good.

      In the beginning, I have had moments of complete locking (to the left in my case). In general, with some trouble, I have always been able to turn my head to the right. In the beginning (almost 2 years ago), I was in a bad state. I couldn’t walk, drive, sit, stand, talk, and eat without major problems. It was exhausting and I spent most of the day lying down. My social life collapsed, like yours. In the year that followed, I gradually improved, but most of the time I did have to hold my head – like you – with one hand.

      Now my neck is completely straight. Most people cannot see a thing. I am able to walk short distances and keep it straight. Driving is much more relaxed; I do use my headrest, but not to the extent that it used to be. My social life is picking up again. When sitting and talking to someone, the tension will build up eventually and this sometimes causes me to put my hands behind my head to get some relief. And there are minutes and sometimes complete hours that I entirely forget about CD.

      I exercise every day. Never missed a single day. It takes me between 0.45 and 2 hours, depending on my mood and available time. I dedicate zero extra time to my diet. I just buy organic products as much as possible. I totally avoid sugar (although I had some chocolate Easter eggs this year), no white bread, no white pasta, little meat, lots of fruits and vegetables, and since a few months I allow myself the occasional glass of wine. In short: the alkaline diet.
      Again, don’t take all of this too literally and just try to find your own way. It is good to have a starting point and follow some scheme, but in the end it comes down to knowing what we need by listening to ourselves (incl. the body). It is that capacity that we need to recover: start genuinely taking care of ourselves in a loving way. Then all will be fine. I guarantee it.

      Does this help? Please do share any other observations and questions that you may have!

      Stay tuned!

  16. hello to everyone. thanks to all who have posted and shared their stories. the truth is i am still going through the website, so still have a lot to read but the stories are inspiring, as i see each one of you facing up to the challenges that cd brings. the ups and downs, the patience needed, the working through all the traumas…
    i have only just had a preliminary diagnosis of cd a few days ago, so of course i immedately went to the internet to see what i could find on the subject. most of what i found was pretty depressing, how there is no cure, and seems to often just get worse with time. i burst into tears, and felt pretty hopeless for a while, but a friend talked me into searching specifically for positive stories of how people are coping with this problem and this is how i stumbled onto your website. so i am very happy to find this website. it does give me some hope. i definitely prefer to be optimistic about it but i do realise that this is a real journey. where we all have a lot to learn about ourselves and how we interact with the world around us. i see it as a great opportunity to do this. i think the greatest thing about this website is also realising that i am not alone. i feel like i have been keeping a secret, since i can keep my symptoms under control most of the time, except when i do certain movements with my head and neck, or certain excercises, like tai chi or chi gong. then it goes wild and everyone in my class sees, but some of my closest friends have never seen it, and i still haven’t had the courage to tell my mom. even though it has been 2 years since i first developed symptoms. in the beginning it went out of control for four solid days, and then after that 10 or so hours of the day. i would spend my time in the privacy of my home, after all my roommates had left for work, letting it all out. i believed that if i just let it all out, it would eventually just disappear. for a year i did almost nothing but shake, sleep, eat and do to tai chi. i almost didn’t see any friends except my roommates, lucky one of them studied chinese medicine so found me to be a great case study. i appreciated the attention, and the freedom to be myself, she kept a sense of humour, and we both laughed about it all, it was great to be light about it, instead of being too heavy and serious . the other roommate i somehow managed to keep from knowing about it. hiding in my room if i had an episode. i now realise that it is a little more complicated than just letting it all out. i need to get to the root of the problem, work through all the emotions, get the support and love that i need, since i am pretty sure this is partly the cause of my cd. and some trauma that i am not even sure what it was when i was very very little, that my body has stored up inside of me for a long time, until i was ready to process it. i still haven’t found the best way to do this, i am looking for a therapist. i would like to go to somatic experience, it sounds interesting. i wonder if there are any practitioners in israel. right now i am studying shiatsu as a way to heal myself and also in turn to help others heal themselves. i believe that this is partly why i have been given this challenge. i have also been going to acupuncture which i find is helpful, there seems to be some progress, as we work to find the most effective points.
    i have got to the point where i only have spasms for about 20 mins a day, some days almost nothing. some days longer. but i do often get very tired, and am often in pain, and always very uncomfortable in my own body – this has not seemed to go away yet. i do find food affects me a lot.- wheat or gluten seems to bring on episodes or just make me feel very uncomfortable, also chocolate and coffee. has anyone else notice these things? i also find that excercising is great, i go rock climbing, that really seems to wear me out, and my muscles seem to relax and usually i feel great afterwards, emotionally, spiritually and physically.
    i think its so important for us all to share the ways in which we heal ourselves, and be a support to eachother. oh, and i really like the poem by Sunflowersprout
    peace and love to you all!! :)

    • Hi Mary, it’s great to meet you! You seem to have a very positive attitude about this, which is wonderful and will help you a lot. There is a lot of valuable info on this site, I would read through all the sections if you can.

      I can relate to your experience of trying to hide your CD, though mine seemed to get worse more quickly, and I wasn’t able to hide anything for very long, in more than one way. I could no longer hide my constant internal turmoil and emotional stress, which I believe was physically manifested outside of me by the CD. It was my body’s way of saying “No! You can’t live like this anymore, and life isn’t going to proceed until you’re living your life differently.”

      I’d recommend somatic experiencing or seeing a professional therapist if you can. I’ve found both to be helpful, and the somatic experiencing was a very necessary step for me to get out of the head and begin to connect with the sensations in the body, separate from the relentless stories that we tell ourselves to escape our feelings. Some people here have talked about Michael Brown’s book The Presence Process. I’m just starting this book myself, but I suspect that all the things we’ve been going through and learning individually are summed up there, and it might be a good place to start.

      Wishing you healing, and keep us posted!

      Leigh

    • Hi Mary,

      Welcome to this blog and thanks a lot for your long introduction!

      So interesting, the way CD manifests in you, with only such short episodes. But perhaps your CD is just in the beginning stages, even though you started noticing it 2 years ago (and you are still young, I think?) Then you have to be prepared for some worse episodes. On the other hand, having an early diagnosis and taking action now, might allow you to reverse the symptoms quicker.

      You can have much more than “some hope”. Neurologists don’t understand anything about this disorder, and when they say it’s chronic, they don’t know why that should be so. They are just looking at statistics. I am saying: CD can be healed, just like any other illness. If you read more on this blog, you will find out that there are quite a few people who commented here, and who have COMPLETELY healed themselves. Personally, I am well on the way as well. Two years ago, I couldn’t do anything, just lie down. Now I am almost back to normal, and most people cannot see anything strange about me.

      But it is a path. You have to understand why you created this condition, and then work on it to resolve it. For starters, make the decision to heal; that is very important. And then heal yourself. Yes, somatic experiencing is a very nice and safe method to release trauma. Of course you can find it in Israel. Perhaps this web page is a good starting point for you: http://www.traumahealing.com/somatic-experiencing/faculty-ross.html
      And there are several other methods you can select to heal your childhood trauma. There is no one generic way to heal yourself. Look at the page Treatments of this blog, and see how many, completely different methods people have chosen to heal themselves. It’s all about what works for you personally, what makes you believe you can heal.

      One of the things that characterize traumatized people, and especially those with CD, is that they have issues with self-esteem. That’s why many of us try to hide our CD, until that becomes impossible ;-) However, hiding our CD is just another example of what I call “rigid control”, a mechanism we have created to live around our traumas. Why not show other people (and more importantly: show yourself!) who you are, with or without CD? Do you think you will get less love once you show your CD? Accept CD as part of yourself, as a messenger, yes, even a friend, who is showing you what you have done with your life, now asking you to become more loving and softer for yourself, to stop making rigid action plans and to start living your passions in flow. Anyway, I think you got the point here; you have already felt how it is to share it with someone and laugh about it to make it lighter. And that’s exactly right: it’s just an episode in your life that will allow you to learn a lot about yourself. So cheer up and just start your journey.

      Take care and stay tuned!

      CCD

  17. i am trying to be more open to people without being afraid of there judgement – i am definititely afraid of being shunned or unloved. and it has happened quite a lot since it all started coming out – like you said – all the emotional turmoil, i started crying randomly and unexpectedly in public and being extremely irritable at people and angry, hating people. these do not help me with the positive attention that i would like to recieve. i am trying to deal with each emotion as it comes up, and try seeings from a different perspective – of love and aceptance, instead of the old patterns. sometimes i succeed, sometimes not. thanks for the website for the somatic experience in israel – i have contacted them, hopefully i will find a therapist.

    my symptoms came out very quickly and at once too. i could barely control them for a whole year. luckily for me it all started in tai chi classes. my tai chi master is an interesting guy in himself – suffering from brain cancer – he uses tai chi to heal himself, and he is still living and looking pretty good ten years down the line. so from the beginning i was led to believe that these movements were a very good thing and a way to heal myself. it was my bodies way to unblock all the stagnated chi, and release all the negative emotions. so i never saw it as a bad thing, i was so positive i never even thought of going to a regular doctor, convinced that enough tai chi i would heal. of course i thought it could happen quickly, and now i am learning that i need a lot more patience, possible my whole life. i m accepting this. accepting this is a hard concept – we are so used to battling, to go against. i like what you said about cd being your friend. it can show me the way, what i am doing wrong, where i am going right. when i am feeling positive i love my cd and am grateful for it. of course other days, i am scared i will just be a crazy freak for the rest of my life, without love and support. but then i think, if i can get through this, i can get through anything. if i can work through all the trauma, learn the power of my mind to keep calm in the midst of a storm. then there is nothing i can’t do. i must admit i love tai chi and aikido for this, we practise keeping calm and stable while being attacked, a perfect metaphor. i thank god for tai chi and chi gong in my life. i think it one of my most powerful techniques for healing. its a martial art so i can get rid of aggression, its calm, and strong, it teaches about balance and posture, so good since my spine is not looking to good. it teaches you to be aware of the sensations in our body, mind etc. and at the same time you are bathing your whole body in good life giving healing chi everytime you do it, and it gives you discipline since it is best to do everyday. and its easy to do, you don’t need any equipment. you can do it any time anywhere. i believe its because i accepted so well in the beginning, just letting myself be taken by the movements as much as it wanted, that i got to the point now where i have very few symptoms now. almost none except when i do tai chi and chi gong. i let go completely and then have control again. control is in the letting go.

    anyway so cheers to accepting and loving the enemy, or changing our perspective from seeing an enemy to seeing a friend. amen to all mankind – lets work through all our traumas – we all have some. collectivey, individually. lets love eacother, support eachother, be one, we are all family. we all need love.

    • Hi Mary,

      Thanks for your many comments! It seems you are taking your healing process very seriously, and that you have already resolved part of the trouble. That is great to hear.

      Be careful not to expect anything from other people, or from any external sources. You can only heal yourself from within. Once you stop judging yourself, your fears about other people judging you will disappear. But I think you already got the idea.

      Yes, I can imagine that Tai Chi has healing effects on you. But as you may know, I am convinced that the specific healing method that we choose is not so important. It is our belief in our healing that is most important. But if Tai Chi and Aikido feel right for you, that’s the way to go!

      Healing of the body can be quick. (See my post Remission Revisited.) But that would require that your beliefs and thoughts also (drastically and) quickly change. So if you are able to quickly change your points of view on life and on yourself, you can heal quickly. Most people take a longer time though, taking small steps.

      It is good that you understand that you are battling against yourself and that you need to let go of the rigid control. CD is your friend indeed, it is part of you, IT IS YOU. Once you truly accept and love yourself for who you are (not for your accomplishments, because that implies conditional(!) love), then you will heal.

      CCD

  18. CCD, as I read more and more of your blog, I find that my suspiciaons are more and more confirmed: you are on a spiritual journey as much as anything else, perhaps more than anything else. The ST/CD “cure” is more or less a hoped for by product and quite likely the least important goal of the journey, or so I have found it to be. This is not to criticize you. I have been on a very long spiritual journey, beginning long before my CD appeared. There is no end to that journey since we are never wise enough to come to ultimate truths, ever, something I realize more and more as I grow older. Still the journey is worth every bit of the effort, whether ST is “cured” or not. The growing and learning spirit is far more important. It will allow us to live with our physical discomforts with practice, and accept what traumas all of us must endure from the day of our birth, It will also lead us to take pure joy in ourselves and others and in the world, whether we consider it to be “nothing” but perception or as real as a the sound a tree makes in the forest when it falls. It does, you know, even if no one is there to hear it. There is no way to separate out the two. I accept both.That is both my spiritual perceptive side (is there reality without my existence to perceive it?) and my materialism talking (the world exists independently of my existence and perception, thuis my ST is real and not going away). I look into the mirror at myself without squirming, blushing or shame. I see and am me. DesCartes, you know. Or I am an illusuion, and so is the ST, but a peculiarly persistent one. It is perceived because my body perceives it as much as I perceive night and day, good and evil, red from blue. Ilive in a body which is very real to my perception.. Makes no difference. There is really no way to know. It is just a bit like the nature of photons, light: waves and/or particles depending upon the circumstances which we use, choose to observe. What is it :really”? It really does not matter, does it? We end up having to deal with it like it or not. Karma perhaps? IDK.

    • Hello Sue,

      Well, I should consider to put you on my SPAM list. Just kidding, but I almost have to take a day off to read your comments and to react. I won’t react to all of your thoughts, but let me respond to some of the core issues and questions that you raise.

      Yes, most people are traumatized, in general. And yes, the trauma spectrum is wide. But that doesn’t make the finding that trauma is the root cause of CD less valid. In fact, it has been confirmed over and over again via this blog – as I told you before! Perhaps you are the exception to the rule, but from the way you write about your life troubles and from looking at the multiple physical injuries that you suffered as a child, I think it is safe to say that you too have childhood trauma.

      The MBTI test is a simple test which measures 4 dimensions of personality. Of course the outcome is a simplification of who we are as a person in detail, but it is a very valid tool to assess our personality. You are either more introvert than extravert, or vice versa. Etc. In your case, I find it very hard to believe that you are INFP. You do not strike me as the feeling (F) type, but more as the thinking type (T), all the time looking for connections and reasons. Likewise, you do not strike me as the perceiving type (P), since you are making decisions all the time, taking action, as well as making firm statements and judgements (J). So I really think you are INTJ. So far, ALL people with CD who have tested themselves, were INTJ.

      Yes, my journey is more spiritual than aimed at healing. Yes, healing is a by-product. I have said that many times. Only looking for healing is pointless to me, since it is essentially the same as wanting to kill the symptoms, rather than trying to understand the symptoms and deal with the root cause. The healing is not a hoped-for by-product. It is a logical by-product, as has been confirmed by the people who have healed themselves. When you take away the root cause of unhappiness, you can feel happy and whole again, and symptoms (=messengers) will go away because they aren’t necessary anymore.

      Right, the physical world is an illusion and does not exist without consciousness. See my post Remission Revisited. We can make it happen. We created CD by ourselves. And we can resolve our issues by ourselves, depending on the power of manifestation that we all carry.

      If you are really open to all possibilities, why not stop rejecting this possibility, rethink it, give it a try and start working on your trauma instead of relying on Botox?

      CCD

  19. Hi, CCD!
    None of my business, but I wonder how old you are and where and how you were brought up. As a young child I was extremely extrovertedand confident, always the first to raise my hand in class, or to be willing to go on stage for our little class plays or sing solos in out little class shows My “trauma” (and it was trauma!) began when I became aware of boys and began to outgrow them I was very tall for my age and too “brainy”, something I tried to conceal for a time by taking “homework”, stacks of books home on the schoolbus just like everyone else, thouggh I had already whizzed through my assignments in short order while still at school. I never actually had homework to take home. And I became introverted. I was not living up to the social norms of my time and place: be pretty, not “too” smart, marry and have children. I and several other girls had to get special permission, demanded by our parents in a meeting with the high school counselor, to be allowed to take all of the advanced math and science courses that were primarily attended by boys. We were told that we would be too offended, too delicate (that was the message if not exactly spelled out in so many words) too “traumatized”, if you will, in being the only girls competing with so many boys in such “difficult” subjects. We girls all graduated at the very top of our class, as it turned out, but we were not asked to a lot of dances. That hurt, a lot. I know very well that we were traumaized at that particular age–a difficult, delicate age to begin with. We were close friends and even counted close friends, if not “boyfriends”, among the boys in those classes But once out of my small town and into the larger world, things changed dramatically for the better. Without going into detail, it took some time and re-evaluation, but we all got over the trauma of not being “feminine” enough acording to the standards of the time and place.. We could be valued as we were. So though I very much value my alone time, I travel freely alone, but am never alone. I have been married, to a husband who did not care for seeing the world and meeting its people as much as I do, something my parents instilled in me and my 2 siblings: curiosity and openness to the new and different.
    It is all part and parcel of the spiritual journey. Perception or reality apart from my perception—it doesn’t matter, since as I said, how does one tell? Are you simply a product of my perception? One can make the choice between the two or live as though both were true. In the long run it doesn’t matter except to the individual. I believe you exist apart from my perception, as does my ST. So does Botox and so does theory that says that we can heal ourselves. We can heal ourselves of much, and I have healed, and am healing myself of my very real traumas.to the very real extent that I can make use of them. But while in excrucaiting pain, it is rather difficult to think about flying off to Korea. The trip to Santa Fe and Abbie’s clinic was very difficult, physically. I was receiving no medical treatment at the time. No one seemed to know where to start. Once I was diagnosed, however, my embarrassment (another social trauma) over my twisted neck disappeared, since it had a name that I could explain to hairdressers and dentists, and to acquaintances as well as friends and family. In fact, I rarely explain to anyone, unless it is absolutely necessary, as in going to a new dentist, doctor or hairdresser, when it becomes a matter to be considered for very practical reasons, for the other person as much as for me, or stops me from a social engagement–when I simply would rather be stiil and undertake to still my ST–and not feel guilty about taking care of myself ( guilt over taking care of myself, being something else I once felt and have overcome as perhaps the most useless emotion there is–unless of course, one should feel guilt about being a serial murderer or worse, in which case, guilt is not likely)..
    Botox allows me to function on MORE than the purely physical leve of pain. Perhaps the day will come when I can more fully live without it. Perhaps I will have a remission (doubtful, but statistically it happens) or there will be a true cure. Meanwhile, I go on with life which has been quite an adventure in the last few years, some really great, some not so great, but that is the nature of life. Do you know the saying “Life is trouble; only death is not……”?. More fodder, if you will, for my spiritual journey

    • PS, CCD.
      Thank you for your patience with me. Since I left my long time home in Colorado to come to Kentucky (I am helping my sister and her husband care for our 94 year old father who has only become very much more in need of help in the last few years). I find myself living in a very tiny town where, though people are nice, friendly and helpful, I have been having a serious case of culture shock. Another trauma? Only in the sense that actual state laws have made getting my long time and very effective medical treatment for ST in Boulder continued in this state. Even my doctors are angry and frustrated by the restrictions put upon them. My symptoms worsened only when I was not being treated, but jumping instead through the hoops that state laws require before the doctors felt free enough to do what they knew had been helping me for many years. Botox was postponed again and again, during which time, I spent much time practicing the self-healing mental and physical excercises I do anyway, and have for years, learned in my long time quest for relief by more than physical medication to ease my ST. I don’t think I have made clear that along the way, I learned a number of somewhat effective techniques that have nothing to do with injections or pills. However, I am very wary of putting my faith completely into one supposed method for “cure”. That can become dangerously close to the kind of “religious” belief that can become cultic. or monetary scams. I was the victim of one such. There are plenty of places in this country, and in Europe and elsewhere for that matter, that would be very open to taking a serious look at Dr. Lee’s methods and trying them with open minds.. Skepticism is not a problem in such places, and a poor excuse for claiming that as the reason his “cure” cannot be taught everywhere.
      Oh, and I have wathced a number of the You Tube videos. I hate to say it, but I was not impressed. Kentucky lies in the “Bible Belt” of the United States, and I can see similar “cures” any day/night of the week on certain TV channels. Faith can prevail sometimes, the laying on of hands, a jerk to the neck or other affected body part—- but in such cases I question the nature of the illness being cured to begin with.

      • Hi Sue,

        How noble of you to take care of your father!

        Please understand: I am not proposing one specific method for cure. I am only proposing to acknowledge the root cause and to address it. That’s all. That simply is the most sensible thing we can do. Fighting symptoms really isn’t very clever. It is okay to do it for a while, if you think it supports you in the healing process, but it will never yield sustainable results.

        You can select any (physical) therapy to support you in the process. As I told you before: it really doesn’t matter which one you select. Dr. Lee’s methods aren’t any better than other methods. I am not promoting his clinic, do you understand? As I tried to explain to you before: he distinguishes himself from other healers by emphasizing that the patient has to heal himself/herself, and that he only provides physical methods to support the healing process. And it works! As I told you before: I have seen several people with CD in his clinic. Dr. Lee showed me their endless take-in videos, with terrible spasms etc. And when I met them, several months later, they looked completely healthy, without any symptoms. And at this very moment, I am near symptom free as wel. That is not because I went to Korea, but because I worked on the root cause and took true responsibility for healing myself. I can still feel some tension, but nobody can see anything from the outside. Is it so hard for you to believe this?

        I strongly dislike religion and cults. I also dislike the paradigm of upward causation. I am convinced of the validity of downward causation and I just like to empower others to take their healing in their own hands. Again: read my post Remission Revisited.

        Take care!

        CCD

        • Taking care of my father is not noble I hope you are not being facetious. I can tell you some sad stories about “nobility” and caring for one’s aged parents. This comes out of love and the way he and my Mom raised us. He is not “all there”, though his dementia is not Alzheomer’s. But at the moment I need to get over to his place. Terrible weather is predicted for the next few days and I have pre-prepared meals for him to heat in the microwave oven and I nor my sister may be able to get to his place for a few days. He believes in his own mind that he is cooking full dinners. Perception is reality for him. We do not challenge him on points like that.
          Later, CCD. I hope we are friends. I think we can learn from one another. Converstions such as this one are very welcome to me. Be back in a bit, if you can stand me. Sue
          PS. I am not THT old :-)

          • Ah, no. When I say noble, I mean noble, not something else. Of course false nobility exists, but that isn’t nobility, isn’t it?

            Yes, I can stand you. And even when it all becomes too overwhelming, I can always switch off the PC for a while ;-)

    • Hi Sue,

      I surely am much younger than you are, male, and from a completely different part of the world, very tolerant and free. Yet, I have gone through some extremely traumatic experiences when I was very young. Be careful: the designation trauma is often used for any stress-related experience. When I speak about trauma, I mean stuck survival energy, after a freeze situation in which fight and flight were impossible. This is serious business and unless released, makes us ill. See the work of Peter Levine, among others.

      As for the question “Is there a material universe, independent of me?”, this does matter. A lot. In the materialist and determinstic view, there is little we can do about our circumstances. If ‘reality’ doesn’t exist without our consciousness, we can do much more – if not anything. And if only our own consciousness exists, really, then we are definitely free to do anything we like. Again: please read my post Remission Revisited.

      Good to hear that you have healed yourself to some extend already, allowing yourself to let go of embarrassment. However, the fact that you still have symptoms, tells me that you haven’t resolved the (majority of the) trauma yet. I recommend a body-oriented therapy. See my earlier comment with details. ‘Talking therapy’ is quite useless for resolving trauma, because it isn’t concerned with signals from the body, and because it makes us reinforce our misery by talking about it over and over again.

      CCD

      • Talking theapy , I find, can be quite useful, but only if you are honest and also very willing and able to talk freely and honestly to oneself.
        As for “freedom”. I tend toward existentialism. I am born free to define myself.
        It sounds to me as though you have experienced trauma to quite a great degree—the freezing. That is not something I have experienced. You make it sound like being a deer caught in the headlights, so to speak. I have been frightened, yes, but have always had a refuge. Even in some of the scarier moments of traveling alone–and they happen–it has always seemed as though I have had a sort of gurdian angel watching over me. I have felt this for as long as I can remember, and my angel has served me well. The angel is me, when it comes right down to it, I realized sometime ago.. Letting things flow naturally and NOT freezing is what has protected me from the kind of very severe trauma that I now imaginre you are hinting at. Is it just possible that your experience has colored your views more than a little? We are all individuals. I am coming to believe that you lived at some point in a very terrifying environment which you could not escape. Escape and succor has always been available to me, so far at least.
        Yes, I suspect I am quite a bit older than you, old enough to have been thinking about the ultimately unescapable end of it all, and what it is, what it means. It has been part of my quest from the beginning but is now more real I see people whom I consider to be young, people my age, who die out of the clear blue sky for no good reason. When my Dad dies, I will be the eldest of the family—quite a revelation. On the other hand, it presents a sort of freedom one does not have as a younger person. That would take a while to explain. In any case, the prospect does not have me fixed in the headlights.
        BTW, I find that one good therapy is to shout out one’s anger, concerning anything that is important enough to make you that mad, and at the top of of one’s lungs. It clears the mind, and I suspect, the body, of mental and possibly chemical toxins as much as a good, hard, honest cry. I find that it also produces a good deal of honesty with oneself: it is essentially baring yourself to yourself. My Mom alway told me that her guilty unexpressed wish was to walk into a church to the the front before the altar and SCREAM!!!! Nothing against the church–just the desire to express honestly the inner self that is not often so well formed, but needs expression Well, I haven’t done it in a church, but a couple of times in fields outside of Boulder with no one looking on but “God” and the prairie dogs, I have done it and felt released in a major way. Here, I have only done it once, making sure that my neighbor was not at home and ready to call the police as iff I were being murdered. Years ago a faddish therapist promoted scream therapy, but as is usual in such cases, codified it, wrote it down. The original reason for it–spontaneous release–was lost. That is what I mean about followwing any one teaching that does become codified.

        • Haha, the screaming therapy is very nice indeed, I agree. Much more effective than talking therapy. However, although it can be liberating to do, and especially helps to release some stuck, fierce emotions, the screaming is not effective for the release of trauma.

          In current terminology: trauma = unresolved freeze response. Anything else is just stress. And stress doesn’t necessarily lead to trauma. Some remarks about trauma =>

          – Trauma isn’t always due to extreme incidents like murder or rape attempts. On the contrary. Some people are very vulnerable and can be truly traumatized (i.e., experience extreme threat, but unable to ‘fight or flee’, thus freezing) by something that is said to them.

          – Baby’s and young children are much more vulnerable than adults. They are completely ‘open’ and will easily freeze in situations that the adults around them do not recognize to be as threatening as they actually are to the child.

          – Most people do not remember the situation(s) that caused their trauma. And very often, they feel it is necessary to deny its existence. (This denial is out of self preservation.)

          I still think you have also been (severely) traumatized, when you were a kid. I am sure you have accomplished a lot on your journey so far, but there have been so many occasions in your (early) life when you were vulnerable, suffering from severe physical and emotional stress. The consequences of trauma are reflected in the hardships your lived in the course of your life, and in the CD symptoms that you still carry with you.

          For releasing trauma, which is stored in the body, the best you can do is body-oriented trauma therapy (see my previous comments to you). This helps to reconnect with the body, to stop living entirely in the head, to open up to the body’s subtle signals, and to follow the subtle impulses that the body generates, thus gradually releasing the stuck survival energy from the body. No talking or screaming therapy can accomplish that. Releasing trauma requires very attentive and extensive ‘listening’ to the body. And the beautiful thing about this is that it is completely safe and that it is not required to explicitly remember anything. The body remembers everything…

          CCD

  20. I just wish I knew what you meant, specifically, by childhood trauma, that you would give me an example. Of course as babes we are all helples and totally dependent on our parents. We bond very early with our mothers and trust in them unconditionally. We have to, and our mothers bond wioth us. Our father bond with the family init in different ways, depending upon the culture and what theory you believe This goes beyond perception when it is studied by anthropologists. We can treat it a mere perception, but that does not help us much. Specifics please….. If I inderwent severe childhood trauma, there are external ways I can verify or disprove it. There were other people around who were close to me and to my family. My physical traumas are common among active children, and I was very active–and always have been. I have incurred pysical traumas through accidents in adulthood that were just as severe, or more so, than anything that happened in my childhood. And some happened because of things far beyond my control, but yet I did not “freeze”. I was once blown over in a 110 PH gust of wind. The foothils of the Rocky Mountains are known for very strong windstorms in the winter called Chinooks. I was walking down the sudewalk during one such strom, with steady winds of 30-40 MPH, with the occasioanl gsu. I heard it coming and squatted down low to the ground and hung on to a downspout on the side of a building. It sounded like the roar of a train coming. When it hit, I was torn off the building and thrown 20-30 feet down the sidewalk. I got up and dusted myself off, but had a rather sore left knee–a bad bruise, I presumed.I was doing errands for my job and went on about my business, even driving a manual drive requiring the use of a clutch. I walked and drove all afternoon, but the pain and swelling eventually became bad enough to go to the emergency room where I was x-rayed. I had a painful, but minor, hairline fracture just below the knee and wore a brace for several weeks (unless I was driving with a clutch–then I cheated and took the brace off). BTW, I also hit my head, hard, on the sidewalk at the same time, but indication were that there was no concussion.
    So what do you mean by trauma? What sort of trauma would be so horrible as to deny its existence out of self preservation, one that adults around do not recognize at all? Mothers are normally keenly aware of their young children’s fears and terrors, and will protect instinctively at all costs. That is true in the animal world as well as the human world (we are simply another kind of animal).

    • Hi Sue,

      Well, I am not quite sure why you still don’t understand what I mean. I have given quite some explanation already. You need to let go of the idea that serious trauma can only arise after some bloody or extremely violent event, which can always be confirmed by others. That simply isn’t the case. First try to understand what the freeze mechanism is. And then try to accept that freezing can happen in a multitude of situations, especially when we are very young and vulnerable. And freezing is serious, always, and turns into trauma if the stuck survival energy isn’t released immediately afterwards.

      Alright, a couple of examples.
      – A baby in a buggy, with mom on the street. Mom sees someone at the other side of the street and urgently needs a conversation with that person. Mom thinks the child is sleeping and since the street is safe, she leaves the buggy on a safe spot and runs to the other side of the street and spends a minute talking to that person, then runs back to the buggy. Meanwhile, the baby, who was awake after all, had lost all contact with mom, couldn’t hear or see her anymore, felt totally abandoned, panicked, had never been apart from mom like this, interpreted this as the end of its world, couldn’t do anything (no fight/flight), and froze.

      – A small child, gets a phone call from dad. Dad says that he won’t come back home anymore, that he has decided to live somewhere else. The child sees its world collapse, interprets this as a definite, permanent loss of dad, is completely powerless in the face of this situation, and freezes.

      – Etc.

      Often, such traumas, which are serious injuries, go unnoticed for the parents. Or perhaps the parents notice some temporary behavior change in their child, but after some time the child will try to continue with its routine and will try to cope with the trauma. (For people with CD, the coping mechanism is rigid control.) Then the parent will think that things went back to normal, more or less, and will forget about the incident altogether. There is no way to verify or disprove the existence of trauma in your childhood.

      Physical accidents often lead to a freeze response (= trauma) as well. The accidents/traumas in your adulthood are consistent with your childhood traumas. Unresolved trauma tends to reinforce itself, to become a recurring pattern. This is quite logical when you think about it.

      The accident that you describe, after which you simply continued walking and driving, is very recognizable. You didn’t listen to the signals of your body at all, you didn’t give yourself the opportunity to discharge the generated survival energy, you just went on based on what your mind told you (= rigid control). This is a clear case of dissociation (operating solely from the mind, ignoring the body), which is caused by earlier trauma.

      I recommend you to read some of the work of Peter Levine, so that you will get a much more detailed idea of what trauma really is.

      I hope this helps.

      CCD

      • The fact that I went on walking and driving was reflective only of the fact that my leg did not hurt more than to indicate that it was bruised. Should I stop in my tracks everytime I get a bruise from bumping some part of me? I don’t think so. As for the “abandoned” baby that Mom though was asleep and therefore could be left for a short time unnoticed, that happeens to literally millions if not billions of children every day. It is a very rare mother who is in her waking child’s presence 24/7. In fact I would call that the very real exception to the rule. Children play happily in their cribs or playpens or in the yard with Mom out of sight fo long periods of time without freezing. Indeed, they are more likely to show a ceratin amount of curiosity that Mom might not allow for fear of physical harm. Sadly it also happens that Daddies call and say they will not be coming back more often than we would wish. It happened in a sense to Barack Obama when he was 10 years old. It happened to my Mom, or I should say it was the equivalent—there was a note to her mother— to when she was 14. Grandma had to explain to her three children that Daddy was not coming back and she did not know why. Talk about being backed into an un-fixable situation, no way out in sight! If we all were so badly affected by such traumas, this world would be functioning even more poorly than it is.

        • Hi Sue,

          Well, what I read in your story, is that you have a disconnect from your body. You do not listen to your body. This is not a reproach. This is simply what all people with CD do. E.g., we tend to think about what we should do after falling down, instead of simply listening to the signals and needs from our bodies. We often try to pay little attention to our injuries, hoping and thinking that it will be ok. (But never really feeling!) This is all part of rigid control. All your comments and sentences reflect the fact that your mind is working so hard to make sense of it all. In the end, that won’t really help you. You need to reconnect with the body and to start feeling again.

          Yes, many children may experience similar incidents, and many may not be traumatized by it. But others will. I was just giving you an example. Something that traumatizes one person, doesn’t have much influence on another, and vice versa.

          And yes, I think that MANY people are traumatized, some more severely than others. And yes, so many people are functioning very poorly, unfortunately. Most of us with CD, have a very productive lifetime behind us, but still we function poorly, because we have such a disconnect and suffer from the symptoms of accumulated trauma. We have lived our lives based on sheer willpower and operating from our minds.

          I recommend the following book.
          http://www.amazon.com/Healing-Trauma-Pioneering-Program-Restoring/dp/159179658X/ref=tmm_pap_title_0

          Peter Levine has spent a lifetime investigating trauma. In this book, he carefully explains what it is, how we get it, and how we can restore ourselves.

          I hope this helps.

          CCD

          • Hi CCD
            I was diagnosed with CD four years ago. I have always thought that I had created this condition myself through childhood traumas but when I mentioned it to my Neurologist, he just laughed and said this have nothing to do with that!!! I had always noticed in my early teens that if I was in a situation which made me feel uncomfortable I somehow would twist my neck and then when it was over I would return to normal. Obviously I am now in my early 50’s and it has come to well and truly rear it’s ugly head.
            I have been getting botox now for 4 years but promise myself I will get off it one day. I do believe that traumas definately apply in my situation with CD. Now I have more stress at the moment so here we go again!!!
            I have also attended STRC clinic and think its a really good program as Abbie emphasis is also on your state of mind plus a very good stretching/exercise program.
            It would just be great to hear about more positive stories. This site is invaluble and I just love reading all the advice posted here.
            JO

          • Hi Jenny,

            Yes, neurologists often react like that, so funny ;-)

            Yes, Abbie also points out the importance of what she calls “the emotional work”. And as you may have understood, I think that is the most important part of the healing process. Yes, taking good care of the body (diet, exercise, massage) is helpful, but the most important thing is to work on the trauma. I recommend body-oriented trauma therapy, such as Somatic Experiencing, Brainspotting, TRE, Shaking Medicine, Presence Process, etc.

            I will soon update the blog to include more stories from people who have visited this blog some time ago, with severe symptoms, and who have meanwhile healed themselves. If you check all the comments on this blog, you will be able to confirm those stories first hand.

            Hope this helps. Let me know if you have questions and/or remarks.

            CCD

      • At the time I was blown over in the wind and slightly fractured my leg. it was most logical to assume that I had bruised it, not that I had broken it. I had never had any kind of fracture before, unless you count the time I MAY have fractured my thumb falling forward when I crossed my skis going downhill when I was a beginner. It swelled, but was never x-rayed or medically treated. The only indication that it might have been broken is that it does not quit match my other thumb 30 years later.

        • Dear jennyo,
          I read your story and I am not being judgmental in the least, believe me, but why on earth do you believe you created your torticollis? I would really like to know. I somehow doubt greatly that you are hypochondriac, but why are you essentially blaming yourself? Peace, Sue

      • Sorry to keep coming back, but my mind is working through your arguments. It seems to me that I did not insist on exerting rigid control in that I was quite happy to allow my minor accidents to slide without too much attention, until it nbecame obvious that attention was needed. To go running off to the doctor for what I honestly believed to be a brused leg or a sparained thumb, would have been indicative of wanting to control every little thing that went wrong with my body. That would have been absolutely impossible to control. It takes a fair amount of LACK of rigidity to,let go of the genuinely small things. I hav always been pretty good at that. And I have always been full of curiosity, come what may.

  21. I would recommend this book to you: http://www.nytimes.com/2010/08/29/books/review/Romm-t.html?pagewanted=all&_r=0
    It has helped me to deal with pain of mind, bidy and spirit that can come with ST more than anything else. Melanie, the author, is nothing is not in touch with her body.
    As far as falling and then walking around and driving on my injured leg all afternoon, there simply was not a lot to “listen” to, coming from my body untill hours lter when the swelling began. I have had other accidents, skiing or running, that were far more painful and sent me to the ER only to find that . It depedends a lot on where it happens. Some parts of the body are far more sensitive than others, and impossible not to “listen” to when even slight “traumatized. Should I have stop everything when I step on a bee, or hornet (exquisitely painful) when I am out of doors in my bare feet? I am always barefoot except in obvious conditions such as veru cold weather and ice and snow, though I do like the feel of fresh powder under my bare feet, as I like the feel of sand or grass. I think I am more mindful of my body than you suppose. I feel the exquisite pleasure of water when swimming naked, or standing under the moon on a warm night with a little breeze blowing, touching all of me. It drove my ex-husband crazy.
    Then there is the question, the major difference, between chronic and acute pain. One is mind ful of the two in different ways. I have done plenty of exercises that aim to heal, as with a later badly broken leg, and certain physical healing activities that aim to firmly establish mind and body connection. I am talking about Pilates that is combined with Yoga, or vice versa. You cannot do the exercises without being very mindful of the body.. It is not a simple matter of repetitive motion such as bicycling or lifting weights, or lap swimming (though I know p. In Pilates/Yoga,eople who use lap swimming as a meditative tool) Have you tried Pilates or Yoga, or better, seeing a physical therapist who is especially trained in both disciplines? You must be absolutely aware of everything your body is doing to be successful, or you WILL fall, in some sense, and fail completely. I was fortunate in Boulder to find such people, and who took insurance as payment.. The town is actually full of such practitioners who sometimes, depending on the therapist, will teach and use visualizationor other methods which engage one’s entire being.. I went to a therapy group recommended by my very open minded family doctor. No such thing wher I am now, though I continue with the exercizes that can be done at home without equipment and am searching for a good yoga instructor geared to dealing with chronic conditions .There are such people. This part of the country is simply not very healthy, however, and eschews such “exotic” medicine for the most part.
    I will try your book, but try mine as well, CCD. Sincerely, Sue .

    • Oh, when I say it drove my ex crazy, I mean that he thoroughly disapproved. He was always coming to my room and closing the blinds for fear of someone seeing me dressed sparsely, though we lived in the countryside with no near neighbors..

      • I was disgnosed with ST about 14 years ago, and the thing that I notice most about myself in contrast to some of the patoents of ST here is that I never believed that I somehow caused it. My ST started with what I thought was a stiff neck.leeping wrong on it. Then I thought it was a herniated disk in the cervical region that would be curd by surgery, a laminectomy, which the doctor’s nurse practitioner had had, and which eliminated the cause of her painful, twisted neck. ST is a SYMPTOM of something, and in her case a laminectomy demonstrably cured her “ST”. I was not so lucky. I have been the whole nine yards, so to speak, in terms of relieving my symptoms, which, in y case almost certainly originate in a particular part of the brain which controls nerve signals to the muscles. I have tried everything from drugs, botox, a variety of therapies, physical, mental and spiritual, aupuncture, Abbie’s clinic, self hypnosis and meditation. Most have helped to a greater or lesser degree. I do not believe that childhood nor adult trauma of any kind have anything to do with it. Having been fairly athletic and on a a long a long, very serious spiritual quest all of my life, I have no doubt in my mind that I am very aware of my bodily and emotional reactions to stress and “trauma’. There is no connection to my ST. However, that does not mean that I am not doing whatever I can do for myself to lead a normal life. Botox is very effective for me. So is meditation and visualization. Acupincture made my back feel much better, but not my neck. Self hypnosis and visualization are great at the dentist’s office. Deep relaxation and trust in one’s caretakers, not fear, does wonders for post surgical pain. If someone believes they have found a definitive “cure” for ST, more power to them, but as I said, I have come to realize that it is a symptom of something else—perhaps genetics, which is most likely in my case given my family background, physical injury, the use of certain drugs, any concrete physical condition such as a blown cervical disk, or sheer nerves when having to give a public speech. Stressors in life can aggravate any dis-ease . Notice the construct of the word: DIS-EASE, not at ease. There are plenty of things to try. Do not be taken in by those who promise too much, however. If it’s too good to be true, it most likely is, as the saying goes. I was nearly so taken in once by a well known “holistic” doctor who promised the moon, for a price, a big chunk out of y pocket book. His reputation was very good, but I learned from a friend who worked for him for a very short time (and quit when he realized that the good doctor only spoke about and made examples of his “cures” of people who wer not actually sick. Others were too embarrassed to admit they had been taken in. That nearly happened to me.So good health and well being in any way you can find it, but I guarantee that ST has more than one cause and every patient is an individual, though I firmly believe that the majority suffer ST from causes similar to mine. That is no reason to giv up. Your symptoms MAY be curable, as were my neurosurgeon’s nurse’s.

    • Hi Sue,

      Like you I have always been busy to take care of my body. And I was also able to feel its sensations. Well, up to a certain level. Trauma causes dissociation, a disconnect from the body or part/area(s) of the body. I had dissociated from the truly painful areas (and literally couldn’t feel much pain at all), not being able to feel the physical sensations and the emotions that were connected to the trauma. In my case: dissociation = lack of flow = disconnect = rigidity. The rigidity was reflected in the behavior of living my life from my mind/thoughts. Physically, the rigidity caused more and more injuries.

      It’s really up to you if you want to ‘try’ Levine’s book. I am not here to convince you, just to support. For me it is SO obvious that the material world is caused by consciousness (downward causation, again: see my post Remission Revisited). So yes, we create our CD by ourselves. Who else would be doing that for us? CD simply is a message from ourselves. It is not something that happens by accident. I have tried to explain this to you, but it seems that my words do not arrive. It seems that you conclude to disagree and still look for (mechanical) causes that lie outside of yourself. That is entirely up to you. And in that case, I cannot be of much help anymore, because here you won’t find a lot of support for your ideas – which are firmly based in the old paradigm of upward causation.

      Take care.

      CCD

      • CCD, I do not mean to imply in any way that Dr.Lee, Peter Leveine or any of the others you cite are scammers in any way. And I do not mean to disparage whatever faith people choose. I only mean to say that when people are in great pain for long periods of time, they are often extremely vulnerable to people who would take every possible advantage of them. And if the “cure” doesn’t work, the consequences can be very unhappy indeed. I would simply advise any such person to be careful, just as one would be careful of the doctors one chooses.

        • Hi Sue,

          Yes, people have to be careful when they think they found a cure. Because there is none. The only option is that we cure ourselves. Therapy is merely a tool, a support for the healing process. So we should never rely on a cure, a doctor, a therapy, etc. That won’t bring true healing (unless we unconditionally believe that it will, but then it is the belief that brings the healing, not the ‘cure’).

          CCD

  22. Hi Everyone;

    I’m writing from Ankara, as you might guess the capital of Turkey. In 2008 I was diagnosed with CD and told by specialists that the only treatmet was botox. I personally didn’t like the idea of treatment with botox since the people experienced it, all said no good results received.And expected coming out of new treatment and healing methods. While surfing I noticed this website and understand that there are various valuable information which would help recosider my road-map on CD. By the way, I should explain that I’m strongly convinced to over come CD and even the worse disseases by brain and heart power. Idea of finding one’s own healing methods and ways is very interesting and hope giving.

    I send my greetings and sincere love to each of you.

    • Hello İlhami,

      Sorry for the very late reply. So great to hear that you are convinced to overcome your CD! But you might first need to accept your CD completely. Try to understand what it means, what the message is of the CD symptoms. Read the pages Phenomena and Perspectives of this blog. Yes, and then use the power of your heart (not so much brain please) to heal yourself!

      Keep in touch and let me know if you want to discuss your ‘roadmap’ more in depth!

      Greetings and love!

      CCD

  23. It just dawned on me: are you from Turkey? You did say you were from a very different culture fro many of us, certainly western Europe and North America.
    Best wishes,
    Cynthia Timko

  24. Siily me. Are you from Turkey? I nearly got there during a three month trip, mostly in Greece, which was the very antithesis of the usual touristy trip, trying to see evrything in a limited timee, but money limited ud from visiting Turkey
    Best wishes, Cynthia Timko

    • Yes I’m from Turkey ad find here in beneficial information and hope to exchange experiences on CD. I’m sure you should have loved Istanbul during your visit Ms.Cynthia. Best wishes.

      • Sorry Ms.Cynthia, I thought you had been to Turkey too. As I once more read your message, I noticed that you hadn’t..)) I’m getting older..

        • I would have loved to go to Turkey. We got as close as a fairly long stay on the island of Rhodos, a small village on the east coast of the island where we rented a tiny house only a block or two from the sea where we swam.
          While there I experienced the most spectacular thunder and lighyenng storm I have ever see. it went on all night, and made it easy for me to understand why the anciant Greeks assigned thunder and lightening to a the god, Zeus. There was a high cliff overlooking the sea where the Greeks had built a temple to Aphrodite and the Christian conquerors had built a church on the ruin. The storm went on all night, so there was o chance for sleep for the thunder and lightening, nut I was happy to stay up and watch amd listen in sheer amazement . At sunrise, the clouds cleared and the sky turne bright blue. A triple rainbow appeared arching over the temple/church. Why wouldn’t allof this be ascribed to god or goddesses? The rainbows could only have come from th goddess Aphrodite in the minds of the ancients. It must be why they built the temple there. Of course the Christians simply meant to overlay all signs of another form of belief, much as they did in an enormous, beautiful mosque I saw in Spain on another trip. The Chrisians built a cathedral within the mosque in Codoba–the Mezquita, a truly spectacular piece of Moorish archtecture. On Rhodes, we walked to the top of the cliff to see the temple and church later in the morning after the amazing storm inspired by the rainbows. I still have a picture of it.

        • We are all getting older. I don’t know anyone who is getting younger :-)
          My last Botox treaatment about 6 weeeks ago gave me tremendous relief, enough so that I feel better about doing the various exercises I have learned along the way, including some I found beneficial at Abby’s clinic in New Mexico many years ago. There are things we can do for ourselves. I am constantly trying to lengthen the muscles that became shortened during the worst of my CD days 20+ years ago, and strengthen those which were weakened, in order to improve the range of motion of my head. Where I now live, I have yet to find a physical therapist or someone similar who knows how to deal with dystonia, so I try to do what I used to do with the Pilates instuctor/physical therapist back in Colorado. Much was done with ceratin equipment which I do not have at home, but there is some I can do without equipment.

  25. Why didn’t you ever elaborate on the phenomena mystery of dystonia? Do you plan to do so anytime soon?

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