Tuesday, June 5, 2018

One Step Forward, Ten Steps Back...

So just when I thought I was on an upswing with my recovery and therapy I got knocked down again. Since my dystonia set in it has always made me clumsy. Bumping into walls, losing my balance, and tripping. Spatial perception and gravity awareness are something that requires thought and if I am not fully present in the moment, I usually stumble. I had my Botox injections three weeks ago and usually they make me feel dizzy and disoriented. Last Wednesday I was trying to get my son to school on time. I was planning on taking my morning walk and it was a gorgeous day. As I went to take my last step on the stairs I missed it. I rolled my ankle and ended up fracturing a bone in my foot and tearing some ligaments. The pain was instantaneous but the rage and sadness that came over me was like a dam breaking. My husband took my son to school and I screamed and cried like a wild animal while he was out of the house. The pain of the actual foot injury is NOTHING compared to the pain of dystonia. The emotional toll this has taken has been more of a setback. Thankfully, the injury is not as bad as originally diagnosed and my recovery time should be about 4-6 weeks wearing a boot and physical therapy. I'm trying to stay positive and at least broken bones can heal. Broken spirits just take a little more time.

Friday, May 11, 2018

May Update. Busy Mind=Busy Brain

Anyone who lives in the Northeastern United states will tell you that this winter was just rotten. It was too long, too cold, too snowy, and very, very, depressing. I am thankful for the singing birds, sunshine, and green grass that I am looking at through my window today. Spring has arrived!

I attended Dr. Joaquin Farias' Oromandibular Dystonia workshop back in April. It was well worth the time and effort but when I got home I felt so overwhelmed and frazzled that I did not know where to begin. I had taken about 24 pages of notes that I needed to go through and organize. I learned new techniques and exercises to add to my unending list of therapies and exercises. In addition to dealing with dystonia I have been going to physical therapy for some pelvic floor issues so I am am doing exercises for that as well. I also had family members become ill and wanted to help them out in any way that I could. I hit my wall of emotional and physical tolerance and had to tell myself to slow down and that it was OK that I could not be the caregiver that I wanted to be or take the time to write share my journey. I finally feel like things are getting more manageable. That is what we all need to do is manage to find some "normal".

Here are some of my notes and key takeaways from the Oromandibular workshop with Dr. Farias . A lot of this information could apply to any type of dystonia and is in his books which can be purchased on his website HERE..

  • Trauma causes stress. Trauma is close to having a stroke.
  • Stress causes trauma ( dystonia) in us. Others may get cancer, heart attack, stroke, etc...
  • There is a genetic component but it usually lies dormant until stress triggers dystonia. Usually it is extreme stress or a traumatic event.

  • Vagus nerve dysregulation is the cause of dystonic symptoms.
  • Too much focus on the basal ganglia-not the root cause of dystonia.
  • To heal dystonia you must address the whole body, not one part of the brain.
  • 100% of people with dystonia have dysregulation of the eyes.
  • The parasympathetic nervous system controls the eyes. 
  • Saliva production is reduced causing dry eyes, gastro issues, vaginal dryness, etc...
  • 90 % of people with any type of dystonia have tongue dysregulation. 100% with oral dystonia.
  • Socialization is very important in healing-creates dopamine.
  • 15 minutes of screen time reduces melatonin by 80%. Turn off those cell phones early!
  • With ORAL dystonia you have to first stop the gut to cause abnormal responses.
  • Healing the gut FIRST is crucial. By changing the gut you regulate seratonin and melatonin.
  • Average time to heal the gut is 6 months.
  • See a GI doctor, Allergist or naturopathic nutritionist.


  • Gluten intolerance/allergy
  • Sugar intake
  • Lactose intolerance
  • fructose intolerance

Try elimination diets to stabilize blood sugar/glycemic levels.

The gut controls the brain. Busy Mind=Busy Brain

Some tips from the workshop on managing dystonia:

It's OK to fail.
Give up on solving the condition to produce dopamine.
The more stress you have the more symptoms you will have.
There is NO QUICK FIX for dystonia.
Be patient and kind to yourself.

Wednesday, April 11, 2018

The Vagus and Cranial Nerves

After my last trip to see Dr. Farias for the oromandibular dystonia workshop he was teaching us how regulation of the vagus nerve through diet (reducing inflammation), stress management, and exercise is crucial to healing and reducing symptoms.

I am a very visual person and needed to find some images and videos that touched on what he was trying to explain. Here are a few that I found that were very helpful.  Before I was diagnosed I had so many symptoms that doctors could not find any cause. My left ear would turn bright red and get hot and it would feel full or clogged. It would also ring sometimes. Looking at this anatomical schema visually helps me put the puzzle together. 

Interesting article- Vagus nerve

Monday, March 5, 2018

Neck and Head Pain. The pain is real and you are NOT crazy.

I was trying to find articles and information on how to explain where my pain was for my most recent Botox injections and stumbled upon this 2009 blog post. "Pain in the Head and Neck". 

This article helped me understand how the muscles work together in a very straightforward and simple way. I also am a very visual person, so the drawings provided in the post help as well. I can definitely relate to the quote, "The pain is not real. YOU are just crazy."  If I had a nickel for every doctor I have seen over the past 20 years and how I was told that there was NOTHING wrong with me and I walked away feeling deflated and completely nuts....I'm sure many of you can relate. I hope this article helps.


Saturday, February 3, 2018

January Update...Three Days Late!

Well...Old man winter has not been kind this year. It has been so cold and bleak here that I feel the winter blues have officially set in. I still do my eye exercises and therapy every day at least twice and sometimes three times. I've been trying to get back to practicing yoga 20 minutes a day as well to get ready for cardio again. I really love this YouTube channel (Cole Chance) for my yoga practice.  They average 20-30 minutes and there are a lot of basic poses that are accessible for my cervical dystonia. If I try something that is too difficult then I get upset and frustrated and want to quit. It's better to stick with poses I can do (even if they seem too simple) to create a sense of accomplishment. The third week of January my husband and I decided to get out of the cold and we booked a week in Florida on the gulf coast. We took our 8 year-old for a week of sunshine and felt the sugary sand in our toes. It was the first trip I have taken in over three years that was not medically necessary. It was nice to see my husband and son have a good time and relax. This whole journey has been difficult on everyone and it was a much needed break from everything. The day after we got back from our trip it was Botox day. I tried 250 units instead of my usual 200. I am anxious about this, but I figured it was worth a try. I'm praying my head does not flop. When it does, it is when I am eating or brushing my teeth. I'm hoping all of the exercises and and eye therapy are kicking in and it won'be too bad.

My son in front of the beautiful Don Cesar Hotel. (and no, we did not stay there...) I love architecture and this grand building is such a gem.