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.

25 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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    1. I have both too. I wonder if the decrease in moisture in our bodies impacts our muscles

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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

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

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    2. Hi Lina, can you please share your email or send me a test mail so I can talk about my dystonia

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    3. Hi Lina, could you please share your email? I was recently diagnosed with oromandibular dystonia and im desparate for help/advise.Thank you

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  9. So it is important to know about the symptoms and possible herbal treatment options, such as extra Natural Herbs for Sjogren’s Syndrome, such as rheum rhabarbarum, ginger, vitamin E, and others.

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  10. As a sign of gratitude for how my husband was saved from cervical dystonia/spasmodic torticollis, i decided to reach out to those still suffering from this.
    My husband was diagnosed of cervical dystonia/spasmodic torticollis in 2013 and it was really tough and heartbreaking for me because he was my all and the symptoms were terrible, he always have Joint pain , and he always complain of Weakness of the body . we tried various therapies prescribed by our neurologist but none could cure him. I searched for a cure and i saw a testimony by someone who was cured and so many other with similar body problem, and he left the contact of the doctor who had the cure to cervical dystonia/spasmodic torticollis . I never imagined cervical dystonia/spasmodic torticollis has a natural cure not until i contacted him and he assured me my husband will be fine. I got the herbal medication he recommended and my husband used it and in one months he was fully okay even up till this moment he is so full of life. cervical dystonia/spasmodic torticollis has a cure and it is a herbal cure contact the doctor for more info on drwilliams098675@gmail.com on how to get the medication. Thanks for reading my testimony.

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    Replies
    1. Hi, i just tried to email this doctor, but it tells me that this email is invalid

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    2. Can you please give me the website of this Dr. Williams? I would love to get in touch with him

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  11. This is really a very nice blog that will very helpful to all people having with dystonia disease.

    Dystonia treatment in Bangalore

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  12. ALL THANKS TO DR WILLIAMS WITH HIS HERB MY WIFE WAS COMPLETELY CURED FROM DYSTONIA.
    Is my pleasure to comment on this site and i thank the admin of this site for his/her great work so far.one of the happiest moment in my life was when the doctor confirm that my wife is been free from this illness. this awesome moments makes me the happiest man on earth, I really don't know how to thank DR WILLIAMS for helping my wife get cured for over how many year of suffering from dystonia. i came across DR Williams contact through a headline news on internet about how DR Williams help a woman to get cured of her dystonia and so many other with similar body problem ,i contacted him and he told me how to get his herb,few day later he sent me the herbal portion which my wife take every morning for 28 days, and his medicine was able to cure her completely from dystonia. and now she very mush okay without any side effects whatsoever, If you have dystonia, you can contact him on his email address drwilliams098675@gmail.com for advice and for his product.

    ReplyDelete
    Replies
    1. Thank you so much for giving us this information. Just wanted to confirm was your wife having cervical dystonia?? Can you tell me where can i get more information regarding Dr.Williams?? Any website or portal regarding his details would help. Thank you

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  13. ALL THANKS TO DR WILLIAMS FOR THE GREAT DEED HE HAVE DONE FOR MY DAUGHTER?
    My daughter suffered from dystonia for more than 7 years which we started experiencing in her when she turned 4 year and 5 months we all thought it will end but got even worse as days went by. We tried all several treatments and therapy prescribed by various doctors we met but to no avail, she lost total concentration and always complain of neck discomfort . She usually tells me she haves jerky head movements . This were steady disorder that disrupted her entire life, even at night she slept less because of this.It was during a casual conversation with a friend that i learned about Dr Williams herbal medicine I was able to contact him on his email address. and give him all the necessary information that he needed,few day later he sent me the herbal portion and his medicine was able to restore her back to normal and she is very okay now without any side effects whatsoever. If you have dystonia , do not hesitate to contact him on drwilliams098675@gmail.com for advice and for his product. I hope this also helps someone out there.

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  14. Great Post! Nice information you shared about treatment we need to take while effected to Dystonia Symptoms. Thanks for sharing.

    Tremor treatment in Bangalore | Dystonia treatment in Bangalore

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