The unwinding head saga

cranium muscles, muscles of the headThis is really a Healing Journey Monday piece but it’s AlphabeThursday and today the letter is “U”. I’ve had this post and this title in my head for a while so this just seemed like the day to post. It’s actually a topic with several parts so the rest will show up on Mondays (probably, unless one of them has a letter that works here…). Sorry this one’s so long – you know I try to keep it short!

In the long, long road back to health, the pieces relating to my head came together fairly late in the game, for the most part. Even though I know it can be trying to “hear” about other people’s medical trials, this case has been a little unusual and has led to understanding a lot about how things work – in ways that much of modern medicine doesn’t understand so I’m hoping this can help someone.

I’ve had so many practitioners for so many years who’ve been shocked by my condition and/or who’ve told me that I had the worst case/example of this or that that it’s unlikely any of you are starting from a place as dire. But I also know that TMJ issues and near sightedness and tight, tense necks and solid or fused cranial plates and blows to the head that receive no treatment to restore balance are all so common that either you or someone you know probably has one or more of these issues so you may find helpful information in this or the forthcoming posts.

I got a lot of pieces of the puzzle along the way without knowing how they fit. I knew from my vision therapist (the late, fabulous genius Dr. Harry Sirota –he’ll have his own post) that my near-sightedness resulted from tight muscles behind my eyes which developed due to emotional trauma. Several practitioners told me my sphenoid was tilted and likely creating a pattern of imbalance all the way down to my feet. My dentist told me I had TMJ issues. My neck had been a major source of tension and pain since high school. What I didn’t know was the way all those things intertwined with one another and then interconnected with various injuries like falling headfirst down a flight of stairs when I was 10 and smashing my head and chin in a car accident.

Most of the many practitioners I saw paid very little attention to my face and head. Acupuncturists sometimes put needles in because I complained so about the pain and tension (and one gave me a series of accupressure points to press that has been a great source of help) and, as noted, a few saw the tilted sphenoid but were unable to release it. Finally a terrific St. John’s Neuromuscular therapist named Valerie Taylor announced after about a year of work that she wanted me to go see a cranio sacral specialist because she could see that there were patterns in my head that were both preventing some areas from being released and destroying progress she made on others.

Off to Judy Gray, top notch cranio sacral therapist. She introduced me to John Upledger’s book on his discovery and development of the cranium/sacrum connection and the technique for bringing balance. I had no idea the degree to which every single muscle in my face, neck and head were wound into steely cords and wound into intricate cross patterns and mazes. At our last appointment before she moved away something opened enough that the muscles started slowly unwinding on their own.

At the time they were wound tight from the skin down to deep levels in my head. Over my eyebrows and across my chin line there were muscles so ropy they stuck out a little bit—and this was after the cranio-sacral work had produced dozens of releases. I’d run out of funding for the endless treatments (at least $35,000, none covered by insurance) so almost no one ever worked on me and yet the unwinding continued. Muscles twitched and jerked and tugged—and OPENED.

By the time Kreig Cremeans and I joined forces five years later most all of the muscles in my face from the bones out to the skin had unwound completely on their own. The few scattered practitioners I saw between Judy and Kreig had never heard of such a thing and clearly didn’t believe my story of muscles unwinding on their own. One tried to pathologize it and treated me for some kind of palsy.

Kreig started making faster progress with a combination of cranio sacral and his bodypatterning technique. I added in a bunch of energy practices to push energy through blocks and my triggers of release work so the muscles began to open even more quickly. And still it has taken years. Kreig figured out more connections that eventually made it clear that issues in my head have been responsible for most of the chronic fatigue related issues for which I have been treated separately from the beginning—and the reason why no progress ever stuck or got past a certain point. So the area of my body that was largely ignored for years—by some really great practitioners who really helped me—turned out to be the key to nearly everything in this seemingly endless journey.

Getting to the heart of a lot of health matters is not always easy or straightforward. A lot of western medicine doesn’t even try to find the origins or the why of the kinds of issues I’ve had.* In a complicated case with lots of issues even alternative practitioners may only be able to see part of the problem. And among all practitioners a miracle like muscles that decide it’s time to let go (one tiny knot at a time) on their own is often outside their experience so they have no support to offer for your experience –or they try to make you believe you’re wrong about what’s happening.

You really have to be willing to persevere, to try all kinds of things, to learn your own body, to listen to your own wisdom and, often, to put together your own program for healing. I hope some of the more detailed posts that will be coming in future weeks (not necessarily every week) will assist some of you in finding help.

*Before I found my way to alternative medicine one doctor, after finding 80 over 50 blood pressure amongst my complaints of dizziness and fatigue, suggested that I should see a shrink… (did you know that mental instability can cause low blood pressure???).


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32 thoughts on “The unwinding head saga

  1. Humm, well, I don’t have insurance so almost never see a doctor. I find the Internet costs a lot less and usually after some research, comes up with the right diagnosis.

    • I haven’t had insurance for years either but unfortunately my problems have required a lot of bodywork — just a diagnosis wouldn’t have done the trick. Glad you’ve been able to get what you needed that way.

  2. I thought my journey was complicated! I love your determination and persistence to heal. You are a great role model for those who are suffering from “mysterious” problems. I also found most of my answers in alternative methods and was originally told I had an anxiety disorder when I actually had chronic fatigue. I healed in about three years. I’m so glad you are sharing this information. I know you will help many. Blessings on your healing journey.

      • I was lucky. My problems were low adrenals, high cortisol, deficiencies in Vitamin B, etc., mostly stress related. My doc said I had 9 things wrong but he could fix them all. I was fortunate to catch it before it went too far.

  3. This sounds frighteningly familiar. It wasn’t until I had steroid injections in my brachial plexus last Friday that many of the issues I have had became more clear. I have been diagnosed with thoracic outlet syndrome. For years I thought that the occasional drooping of my right eyelid was due to some sinus condition, and I never understood why my hearing in my right ear was bad, or why I occasionally choked when I swallowed. I never saw the connection between those issues and unrelenting pain I was suffering in my trapesius muscle, and the constant spasms I was experiencing. That bundle of nerves that make up my right brachial plexus has answered my questions. I hope you can find relief. It has taken 33 years to find that out.

    • Wow, I’m at about 27 years and it looks like I won’t have to get to 30, thank goodness. What a long journey for you — so glad you’ve finally found the answer!

  4. It’s clear you have had to push, push, push to try to get to the root of your situation. More than ever, it’s something we must realize that we are in charge of the care that we get. Do whatever you must to get answers.

    It sounds an uphill battle but I am glad things are looking up.

    • Yes, I think I may finally be on the downslope but if I had accepted misdagnoses and treatments that didn’t work as the end of it I would instead being working on accepting pain and fatigue as permanent conditions. You really have to be willing to believe practitioners and doctors can be (and often are) wrong sometimes to get to answers.

  5. I’m so sorry to hear what you have been going through. We do need to push our doctors to find out the root cause of our health issues. Glad you are doing much better now. Thank you for taking the time to visit me.

  6. The body is an amazing thing, so complex and it can do so much yet there are these downsides that can take forever to figure out and correct. Glad you are on the mend and it’s a very interesting tale, thanks for sharing it!

  7. Wow, what a story! I have TMJ and other assorted neck head stuff so I can relate to some of your

    Dear Leigh, I found this on your challenge post and wanted to follow the trail..
    I have had and still have my share of health woes including TMJ and neck, shoulder, head pain so I understand health trials, but WOW, this is beyond what I have experienced. I know the world where no one knows or is invested in figuring out what is causing your agony but you… I do understand the muscles unraveling on their own and here is why: Anything that starts in one direction can reverse. Time is not linear either and so why not albeit slowly return your state of health to a point before the muscles began to tighten up. So glad you finally found people who were devoted and knowledgeable and cared about assisting you to heal yourself.


    • Thanks — yes it isn’t always easy to find practitioners who know how to deal with unusual issues. Like you, I’ve believed all along that if it could be put in my body it could be taken out of my body so I’ve just refused to listen to anyone who said it couldn’t be done. Hope you find the right person to help with your TMJ, etc. issues.

  8. Pingback: The long haul | Not Just Sassy on the Inside

  9. Pingback: Unwinding update | Not Just Sassy on the Inside

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