A Nurse’s Journey With Cervical Dystonia

Most don’t know my story. For those who have been recently diagnosed or who have suffered for many years with the debilitating neurological disorder called Cervical Dystonia, this is for you. 

I was already passionate about sharing my story, but when I found out that it can take up to 7 years for a proper diagnosis I was incensed. In my 25 year nursing career I had never heard of Cervical Dystonia. We have to do better. I hope that by sharing my story it will help others be diagnosed sooner. 

Disclaimer: None of the information in this post is meant to diagnose, treat or be taken as medical advice. 

For the last 7 years I have silently battled Cervical Dystonia. 

Its destruction to my mind, body, and soul knows no bounds and no stone has gone unturned in my search for pain relief, normalcy, and peace. While it has certainly not been easy, I am happy to say that I am on the other side of the pain and anxiety and want to share what I have learned along the way.

Dystonia is a neurological disorder that causes excessive involuntary muscle contractions and can affect any part of the body. It is also referred to as a Movement Disorder. In my case, Cervical Dystonia, the body parts impacted are the head, neck and shoulders. These excessive contractions cause my head to turn to one side and tend to stay stuck there. 

The only way I can describe what it’s like is imagine having the worst charlie horse you have ever had happening in your neck on one side or the other and it lasts nonstop. On several occasions the spasms have been so intense that it was hard to swallow. That is some scary stuff not being able to swallow, especially if I’m not expecting it.

Not only do you have pain from the constant muscle contraction but you also have fatigue and chronic stress from trying to force your head to return to a normal or non-tilted position. As if looking weird wasn’t bad enough, when your head is tilted to the side it completely changes your field of vision. So not only do you look funny, now it is hard to see what’s on your left side and it completely disrupts your sense of balance.

The tricky part about this condition is that no two people present the same way and at the moment, there is NO cure. The focus is symptom management, not my cup of tea. I am always looking to heal the root cause of the symptoms. Not a cool condition to have for someone who has a high need for certainty!

The Dystonia Medical Research Foundation has a wonderful screening tool you can complete and take to your doctor.  

I have been a health nut and avid exerciser my entire life. I truly enjoy daily movement and honestly feel bad when it’s not happening. I also hold my health and well being with deep regard. I also believe in the body’s natural ability to heal and regenerate, when given the chance!

When this rare disorder came into my life it completely flipped it on its head.

First I had to figure out why this was happening to me and how I could get rid of the constant pain and looking so strange. Then I had to figure out how to live with this debilitating condition.

Every single thing in my life had to be modified. I couldn’t do what I did before and everything exhausts the body and requires more rest.

Cervical Dystonia has cost me: energy, my dignity, relationships, my work, and thousands of hours and dollars over the last 7 years.

As a result of the chronic muscle spasms and my tilted head, I could no longer do regular daily household tasks like: cooking, cleaning, or styling my hair. It was way too painful. Intimate relations with my husband took a back seat. I had to stop running and doing hot yoga. Sitting for extended periods of time was excruciating, especially if it involved having to focus on something, for example a speaker at a conference, a track meet, or a band concert. 

The absolute worst part was that gathering with family and friends for meals became undoable. Unless I could be seated to the left of the person I wanted to talk to, there was no way I could engage or interact with them because I had such limited movement in turning my head to the left. 

Not  only was I robbed of doing the daily things of life, the things I loved too and then I had to deal with the deep guilt of feeling like a massive burden to my family.

Over the last 7 years I have tried:  reiki, cranio-sacral therapy, brain training, energy work, visual therapy, Botox injections, chiropractic treatments, prayer, denial, affirmations, journaling, forgiveness, anger, matrix repatterning and hundreds of hours in various physical therapy practices.

The farthest I traveled to heal my Cervical Dystonia was 432 miles (6 1/2 hours) on 8 different occasions to receive treatment at a Craniofacial Pain Center that involved an oral device.

The weirdest part of this Cervical Dystonia is how it began. It all started so subtly. My husband and I were sitting on the coach and out of the blue my head involuntarily turned to the left. While it definitely got my attention, I didn't think much of it other than it was strange and definitely not normal. Things began to get worse, my head was moving involuntarily and the mobility in turning my head became restricted, especially when turning to the left. 

I went to my primary doctor who referred me to a neurologist. Based on my symptoms and his exam, at my first appointment he told me that I had Cervical Dystonia. He was so matter of fact and also shared that there was no cure and they don't really know what causes it and recommended Botox injections. 

After receiving this diagnosis I went home and Googled Cervical Dystonia and all I remember reading is that you will be in pain, depressed, and disabled and there is NO cure.

When I showed up to my first Botox appointment and excitedly shared with my neurologist that  I planned on doing physical therapy he quickly replied, "that won't help you".

I was absolutely flabbergasted and devastated. What provider tells their patient something so heart wrenching? Haven't you ever heard of the placebo effect? If I believe in the power of something to help me, it will. I remember being at another Botox appointment with this provider and when he was giving me the Botox injections into my neck I started crying from the pain and feeling so overwhelmed. He never stopped or asked if I was ok. I never went to see him again.

Fast forward several years to the appointment where the straw that broke the camel’s back revealed itself. I was at my 10th consecutive appointment at yet another provider. I was laying face down on a treatment table and was all alone and a wave of pain and absolute despair completely took me out. The pain was so intense that I completely broke down and sobbed. I couldn't handle life this way. The pain was so bad and my neck was so tight that I couldn’t drive myself home and my husband had to come pick me up.

That was my breaking point. Not being able to drive and needing disability accommodations to work from home. 

Little by little, I felt my world closing in and becoming smaller and smaller. I began to panic about where this condition was going and how I would be in 5 years if I didn’t get a better handle on it.  

It was after that breakdown and having some time to collect myself, I asked myself how long do I have to live with this and with no end in sight, I decided I had to take matters into my own hands.

I decided that day that I had to become more intentional with where my life was headed, despite having this diagnosis. I would not allow this diagnosis to define me or my life or make me feel out of control a moment longer. 

My intention is to LIVE fully while I am here with as much fun, joy, and shenanigans as possible.

What I learned along the way is that there are four key things that helped me crack the code on living with Cervical Dystonia.

#1 Support From People In The Know, who are in the trenches with Cervical Dystonia and have been where you are. Most people mean well but they have no idea what you're going through. They are well meaning and they don't want you to be in pain but they have no idea what you're going through and cannot relate and cannot really support you in a way that is actually beneficial.

#2 The second thing was really understanding the True Connection Between Stress And Pain. I observed that when I was more stressed (and we all encounter stress) that my pain got worse. So I wondered if I could find a way to decrease my stress even though I was under stressful situations because Cervical Dystonia in and of itself is stressful. If I found a way to decrease my stress, could I relieve my pain and I really delved into what it means to have holistic stress management?

#3 The next piece was the importance of Being Impeccable With My Nutrition. Really looking at what we know about the power of nutrition as a source of the building blocks of healthy cells. We are DNA wrapped in food. Junk in, junk out. Our bodies are made up of the building blocks that we feed it through the food. What we eat, drink, and even think matters a lot in our ability to heal.

So really looking at how I can support my cells and then finally, beyond stress, support and nutrition and clean eating was the rest of those everyday habits.

#4 The fourth pillar was the Everyday Moment By Moment Habits. Those little things that happen every day that we take for granted and really look at sleep and thoughts and movement and what is healing and what is hurting.

As I looked and took into account these four pillars, the protocol if you will of what allowed me to go from daily pain, restricted movement, anxiety, and fear to no pain, mobility, peace, and joy all while having Cervical Dystonia was born.

The Overton Protocol for Cervical Dystonia-The Core 4 Pillars of Cervical Health.

As I took into account all four pillars so no missing links, and stacked each of these tiny steps in the right direction. The results were profound. It only took 7 years, and I am immensely grateful to be here now.

I love that I now have:

• Improved Mobility
• Less Anxiety
• A Provider I Trust
• Deeper Relationships
• Pain Free Movement
• More Joy
• Healthier Relationship With My Body
• No More Hiding or Shame About My Condition

This has allowed me to:

• Drive Safely
• Do The Work I Love Without Costing my Health or Wellbeing
• Take Life Less Seriously
• Practice Gratitude
• Style My Hair Without Pain
• Be Intimate With My Husband
• Enjoy Social Gatherings
• Practice yoga with ease
• Walk at my favorite lake every day
• Ask For Help + Have Bodacious Boundaries

So if you are suffering in pain, if you have Cervical Dystonia, if you're thinking there's nothing that you can do, know that it doesn't have to be that way, even if it seems debilitating and like all hope is gone. 

If you are feeling like this and crave answers and support along with guidance from someone who gets it, I would be honored to have you join my FREE 5 Day Cervical Dystonia Reset Challenge. 

We begin Monday, August 7th for 5 days. Reserve your spot today, doors close in 5 hours.   

All love,

Lisbeth