How I Naturally Treated My Dystonia Symptoms



There is no cure for dystonia. 

This post discusses the actions I took in 2010 to treat my dystonia. Within 6 months of these changes, my neurologist, a specialist in movement disorders, confirmed that I no longer had symptoms of dystonia. 

Prior to beginning these treatments, I was diagnosed with:

  •  Hemidystonia and writer’s cramp
  •  Sjogren’s Disorder
  •  Gastritis
  • Hashimotos
  • Tachycardia

I was taking the following medications

  • Botox Injections
  • Klonopin
  • Tetrabenazine
  • Physical therapy for use of my hand

My doctor also recommended prednisone for my other conditions, but I declined taking it. 

While I experienced some success with the medications and therapies I was receiving, the side effects were not improving my quality of life.  I felt desperate to find natural alternatives to the medications I was taking in order to reduce my symptoms and increase my quality of life.  


Dystonia Symptoms

The first thing I wanted to do was reduce my dependence on tetrabenazine. It was very expensive and caused me a crippling amount of fatigue. I rarely used my klonopin, except in extreme situations. It allowed some range of motion, but did so at the expense of my memory. I developed gastritis after a few rounds of botox, so at my doctor’s suggestion, that treatment was discontinued. 

Since tetrabenzine was the only medicine I still depended on, I began by researching how it worked. My basic understanding was that it reduced the amount of dopamine in my body. At the time it was an experimental medication for dystonia. After some time, I discovered that there was another therapy that reduced dopamine in the body- meditation. I began meditating for 30 minutes every day, as soon as I woke up. 

Autoimmunity

My neurologist believed that many of the symptoms not related to dystonia could have been attributed to my autoimmune disorders. I actually found out that I had these disorders by accident. While searching for the root cause of my symptoms, antibody testing revealed a lot of abnormal activity. While my doctor could not explain how dystonia relates to autoimmunity, she did suggest that there is a connection. 

There are many natural treatments for autoimmune disorders, but I decided to focus on diet. While I didn’t notice any difference in symptoms following certain foods, I was willing to change my diet to see if it would work. I decided on a modified Paleo diet that was low in inflammatory foods and high in healthy fats. 

Fatigue

When my symptoms were at their worst, I was sleeping up to 14 hours a day and not doing much activity. After a month of the new diet and meditation, I slept no more than 8 hours a day. I also made a daily habit of doing some type of physical activity. This included walking, tennis and swimming. I drank more water and got plenty of sunlight. Over time, my muscles began to relax to a normal state.

I continued this practice for approximately 9 months. After the first two months I had stopped taking all medication. After 6 months, my neurologist stated my symptoms had significantly declined. After 1 year, I was able to become pregnant and have a successful pregnancy. 

At times, my symptoms have re-appeared, but to this day they have not returned to the disabling state they previously were.

13 comments:

  1. I only wish my children's Dystonia was as simple as Writers Cramp.

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    1. I wish I only had writer's cramp =) That was only the first of my symptoms. Have you had genetic testing done on your child? Have you done Sinemet testing to see if they are dopa-responsive? Is it secondary to another condition? My hemidystonia most likely is.

      Dystonia is extremely hard for everyone. I wish you and your child the best luck in finding relief.

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  2. So glad you found something that helped. I gave early onset generalized dystonia...changing my diet helped. However it in no way made a drastic change. DBS has been my best treatment. Best wishes.

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    1. YAY!! I know plenty of people who had successful results with DBS. It seems like a good route for people with generalized.

      I wasn't a candidate for DBS. (I had a consult.) After a year of trying everything, I was willing to do whatever it took to calm my symptoms.

      As I told the previous commenter, my hemidystonia is most likely secondary.. and perhaps my diet change stopped whatever was triggering my dystonia. Not sure- but still happy.

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  3. I went on a gluten free, dairy free diet and it makes a huge difference. I can tell when I have either one as my tremors that I get with my cervical dystonia go wild!

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    1. Thank you for commenting!

      I am glad I am not alone in experiencing these results. I am not saying everyone will have the results I did, I am saying I had these results, so likely someone else could too.

      My true goal in sharing my experience is that someone will read this.. agree or disagree.. then talk to their doctor about the affect of diet on their dystonia, -- why it did or did not work for them -- and perhaps we'd get to the bottom of what really is going on with dystonia as a whole.

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  4. I too, feel there is a strong connection with Dystonia and Sjogren's, for I have both of them...although I don't have serious symptoms with SS, I sure know when it is flaring on me. Right now here in Arizona it ismonsoon season and with all the unstable weather, my Dystonia and Sjogren's and osteoarthritis all collide making for one very unhappy camper. I will seriously consider your lifestyle changes and hope this all helps other people as well.
    Keep fighting the good fight, Jenn!

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  5. Hi. I just want to make sure, does gluten free diet really works? How long does it take until you see and feel the difference? Thanks. I need a confirmation, because i currently have cervical dystonia. Its been 2 years now. I am unable to walk and use both hand now. I do hope this diet will actually work.

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  6. Hi. I just want to make sure, does gluten free diet really works? How long does it take until you see and feel the difference? Thanks. I need a confirmation, because i currently have cervical dystonia. Its been 2 years now. I am unable to walk and use both hand now. I do hope this diet will actually work.

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  7. Im not diagnosed but have all the symptoms of dystonia. It comes on mildly when im tired, stressed or cold.. but not a bother. BUT if o eat gluten or dairy.. fully body.. debilitating... muscle spasms.. this recent one webt for days. And then my muscles have been so heavy and weak all at the same time i have felt like i am dying. I can say with fully confidence.. that if anything.. gluten and dairy free.. and corn free because corn is cross reactive with gluten... will work or atleast tone it down massively.

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    1. Ignore the spelling errors. Im so warn out from recent dairy consumption and possible accidental gluten consumption and a string of spasms following. But yes. Please do try gluten and dairy free and stick to it 100 percent because i am quite sure it will help.

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  8. Hi, My name is Lina Schneider, I am 31 years old,
    And live with my boyfriend in Belgium, but I am Colombian. I was diagnosed in 2012 with cervical dystonia/spasmodic torticollis. Doctors told me this condition was forever. I know how you feel and what you are going through. I just want to tell you that I am cured now, the last time I can remember having cervical dystonia was in the summer of 2014. It was a long and difficult process but I am so thankful I don't have it anymore. Please know you can be cured too. Accept what happened and is happening to you, forgive, let the past go, love yourself and others unconditionally and be thankful. Everything happens for a reason. If you want to be in contact and share experiences and thoughts feel free to e-mail me.

    Best regards,

    Lina

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    1. Hi Lina, what did you do to cure your dystonia? Thanks

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your comments are appreciated.