-150x150.jpg){kind=avatar}
When I look back over the past 10 years since developing dystonia’s motor and non-motor symptoms, the period that stands out as the most upsetting were the many months before the movement issues arrived. I’ll call it “Phase 1”. The next most upsetting period was after the movement irregularities began, called “Phase 2”. The next phase began a period of hope and improvement, called “Phase 3”.
Phase 1:
I spent many months, probably years, prior to the first movement troubles floundering in the dark, not understanding what was happening to me. I had a host of issues that seemed to be piling up, but doctors didn’t suggest there was a connection. I would visit specialist after specialist for issues like sudden and fluctuating blurry vision and depth perception problems, earworms loud and continuous, bladder control difficulties, overwhelming anxiety, social disconnect, strange gastric sensations, breathlessness, neck pain, raging insomnia, minor skin rashes, obsessive behavior, some cognitive decline ………………… and would mention issues like sensitivity to bright light, sounds, smells, at times overwhelming fatigue where I could barely stand and at other times ridiculous amounts of energy having me walking or hiking incessantly, along with an extreme sensitivity to external stress which would exacerbate the other issues and vice versa.
I was told “we don’t find anything serious on the tests, perhaps it is hormonal, perhaps you need some psychotherapy, or maybe you are just getting older, we can offer this medication or that…….”
Putting bandaids on the different issues with multiple medications didn’t make sense to me – I feared I would end up on 5 or 6 meds and wouldn’t know how they interacted so just did my best to minimize the symptoms.
All of these health issues, well, it felt like I was plugging up holes in a dam, but then a new hole would pop open. Even though I believe each doctor wanted to help, they did not realize (nor did I) that my entire body was reacting to a systemic problem, it was just a topic they didn’t fully understand. I was slipping through the cracks and started to sense I was seen as a ‘troublesome patient’, and one that was shuffled by them or by my own frustration from one doctor to the next.
I started to decline emotionally too. Though always an anxious person, this anxiety was through the roof – like nothing I can even describe. I began to isolate more and more, by choice as I had started to feel ‘different’ than others, not accepted. I would describe it as slightly paranoid combined with despondent. I accepted fewer and fewer social engagements, and it reached a feverish pitch where I yearned to live alone in a cabin in the woods where I could find protection from the outside world, safety from what I saw as a frenzy of activity in which I had no place. It was a lonely and terrifying time.
In regard to the physical ailments, I didn’t share much of this with loved ones, except marginally, as it seemed I was complaining about small things so I tried to tackle each one or just deal with it. I definitely didn’t share my emotional decline, on purpose, due to the stigma associated with mental illness and my sense I was becoming so.
Phase 2:
In the midst of all of this decline, suddenly I started experiencing periods where my head would shake, a few times a day at first. Then one day I was looking down and my head lifted up all by itself, without my asking it to do so. The unwanted movements kept increasing over time, and eventually I was diagnosed with an overlap of two conditions, essential head tremors and cervical dystonia.
Unfortunately, I already felt socially disconnected so when the movement irregularities began, suddenly my internal disconnect was matched with external movements that showed outwardly for all to see. Here I was trying to hide my emotions and abruptly I was put in a spotlight due to the atypical movements. Isolation escalated.
My MDS Neurologist suggested I hold off on the ‘movement meds’ until I absolutely felt no choice, as the medications’ side effects could be worse than the condition itself. I took her advice and embarked on a search for alternative style methods, not having any idea what that might look like.
It was very difficult expressing to loved ones and friends what was happening as there were so many things going on at once and the symptoms would fluctuate. Despite their care for me, it was difficult for them to get inside my head and body to truly experience the mental and physical difficulties, to know how serious was my mental state and physical state.
Phase 3:
I came across Neuroscientist Dr. Joaquin Farias, read his books, and learned about the systemic nature of dystonia. It was like someone lit a candle for me in a dark tunnel! Suddenly all the pieces of my health puzzle started to make sense, I could see the bigger picture. This man totally got it, I knew it!
For the first time I heard the term dysautonomia, which most with primary dystonia will have even prior to the first movement irregularity. That dysautonomia is autonomic nervous system dysregulation, and it can come with a host of physical issues that can be different in each and every patient. I learned many of the physical ailments I had were connected with autonomic nervous system dysfunction and dystonia is a culmination of that dysfunction.
I learned I could minimize and sometimes eliminate the issues, including the movement ones, by using his holistic approach based in neuroscience. I also learned why some will isolate and why we have so much fear. You could assume it was because of the trauma of the diagnosis and the embarrassment – but it goes beyond that. Our symptoms are actually organic in nature – just as the movement issues start in the brain’s neural connections going awry, becoming weaker or overstimulated, so can our other problems, both physical and psychological.
Today:
When deciding to write this piece, it took me a while to pull it together because, quite frankly, I no longer feel isolation, fear or despondency – and it’s been hard for me to get back into that headspace to remember how it felt. That’s a very good thing! After years of dystonia education with Dr. Farias and years of managing symptoms, so much has changed for me in a good way. My life is now quite pleasant, and I wish the same for you.
Dr. Farias has put all of this information and so much more, on an online website called the Dystonia Recovery Program with hundreds of videos and posts. As examples, there are tutorials (to learn why we are the way we are) and exercises (to stimulate the weak neural pathways that are causing the miscommunication to the dystonic area) and neuro-relaxation items (to help regulate the nervous system which is undermined in dystonia). I call it ‘Dystonia College’, and you will walk away from it knowing more about yourself than you could ever imagine – along with tools to feel and move better.
If you are out there and feeling alone, confused, frustrated and fearful – if you are having difficulty finding motivation to try to help yourself because you can’t imagine there is a way to do so – I hope this article is a tiny glimmer that gives you the will to move out of that dark tunnel and into the light of knowledge and improvements.
Kim Amburgey