Monday, March 15, 2010

Dear Diary: I dont miss you, Dystonia

I started a new medication in 2010. A little powerful pill called Tetrabenazine and it apparently is my wonder drug. Ive completed my six week trial, and I am walking straight, standing tall, and touching both shoulders with my chin... (not just the right one)

After over a year of dealing with the fear of waking up and not being able to straighten, I found myself doing things this month that I havent done in years. I call it my March Madness. My family calls it scary.

I was off to a slow start with my new medication. I have to say, I dont really remember much of February. There were eating spells, sleeping spells, dizzy spells, severe writers block and the infamous 3 days where I couldnt sleep at all. There were not, however, any dystonia spells.

After one week of the medication I gave up on it.

But after finally speaking with my neurologist about my side effects she encouraged me to stay on it a little longer.

Im glad I did.

I still have very difficult mornings, due to the side effects, but I am now back to sleeping 9 hours of sleep and living full, non or low dystonic days. ..

The benzos and or alcohol, has been downgraded to aleve and water.

Limping and cane walking has been traded in for strutting in 4 inch heels and dancing.

Tweeting my friends has been upgraded to road trips and parties with my friends.

All day sleeping has been exchanged for part time promoting.

Although this is not a cure, rather a maintenance medication, that may or may not work a year from now... I am glad to say I dont miss my dystonia.

but I do plan to live it up while its gone.

6 comments:

  1. Hey Jenn,

    I'm so happy for you! it's truly amazing and the freedom from dystonia is like a miracle. I'm not blogging about dystonia anymore and have decided to focus on healing and art. The 2 Neuro's in NYC that I've been working with have me feeling very well. I haven't needed a cane since January. Praying that we continue to move forward and away from the pain!

    Hugs,
    Sue

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  2. Very interesting. What is the medical term for your dystonia? I may run this by my Doctor.

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  3. Quoting I am Jenn "I WAS DIAGNOSED WITH TASK SPECIFIC FOCAL DYSTONIA (ALSO KNOWN AS WRITER'S CRAMP)SPRING 2006 AFTER LIVING WITH IT SINCE 1993. IN SPRING 2007 I BEGAN TO HAVE PROBLEMS WITH MY NECK. FALL 2007 WAS THE FIRST TIME I EXPERIENCED DIFFICULTY WALKING. MY SYMPTOMS INCREASED, AND IN SPRING 2009 I WAS DIAGNOSED WITH GENERALIZED HEMIDYSTONIA.. ALL THIS BEFORE 30."

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  4. Thanks Service Dog...

    Organization, if you are asking rather my dystonia is re-diagnosed due to the fact that I am responding to tetrabenazine.. according to my doctor it is not. I still have dystonia, it is just currently controlled just like others control theirs with botox.

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  5. Jenn:
    Any updates with using Tetrabenazine? I started a few days ago. As you know it is a slow titration schedule so I am still on 1/2 a day with the plan to work up to 3 a day. At what dosage did you start to find some benefit? For other readers I should mention that it is a very expensive med. Coverage was rejected by my insurance initially but approved after an appeal. A private grant making group is covering the cost of copay ($800-900/month!!!!). Basically, my doctor's office took care of figuring out how to get it covered. After all they did to get me the med, I sure hope it helps.

    Hope you are still doing well.

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