helplinedonate
  • Announcements

    • ForumAdmin

      Frequently Asked Questions - Step by step guides

      Do you need assistance registering, logging in, posting, etc? Please visit the all new Frequently Asked Question Forum for step-by-step guides. Click the link below to access these helpful guides. Frequently Asked Questions
    • ForumAdmin

      Recursos Nuevos en Español

      http://www.parkinson.org/ayuda   http://www.parkinson.org/espanol    
    • ForumAdmin

      Línea de Ayuda 1-800-473-4636

      Línea de Ayuda 1-800-473-4636   ¿Qué es la línea de ayuda 1-800-4PD-INFO (473-4636) de la Fundación Nacional de Parkinson? Es un número de teléfono gratuito que ayuda a las personas con la enfermedad de Parkinson, sus familiares, amigos y profesionales de salud, a solucionar diferentes inquietudes.   La línea de ayuda ofrece: Información actualizada Apoyo emocional Referidos a profesionales de salud Recursos comunitarios Amplia variedad de publicaciones gratis    
Sign in to follow this  
Followers 0
Sean

dystonia...dystonia...dystonia!

6 posts in this topic

Hello Mark,

Ever hear of somone having bouts of dystonia that last for days? I've had little experience with dystonia, only mild cases, until recently. I'm now on my fourth consecutive day with severe dystonia on my left (most affected side). I don't awake each day with severe dystonia but I can feel it coming on. It's quite eerie, really. It starts at my head, mouth, voice, and slowly makes its way down to my neck, shoulder, arm, hands and fingers, torso (internal tremors), hips, leg, and foot.

 

I've been on the same pharma regimine for a few years now...

Sinemet 25/100 5 tabs 4x daily

Amantadine 100mg 1 tab 2x daily

Comtan 200mg 1 tab 3x daily

Azilect 1mg 1 tab daily

Skelaxin 800mg 1 tab daily

Flexeril 5mg 1 tab daily

Baclofen 10mg 2 tabs daily

Clonazepam 1mg 1 tab daily

 

Am I taking too much or too little?

 

Take care,

Sean

Share this post


Link to post
Share on other sites

Sean,

The main 2 meds that work best are Baclofen or tizanidine . Both work different than all other teachers, they wor kfrom the spine. Iy and are used specifically for MS, & PD.

I use the Baclofen 20mg 4 times a day and have great control.

I think you need to up your dose

Keep me posted.

Share this post


Link to post
Share on other sites

Hello Sean I have had dystonia since I was diagnosed ten years ago. Since increasing sinemet it is worse, seems to bring it on shortly after taking a dose as well as when I am ready for my next dose. Fluctuations have made it unpredictable. I have tremors only when I have dystonia. I am taking 8 sinemet a day 100/25 and 8 mgs of requip a day. My neurologist says that I should have DBS surgery but I am not convinced it will give me relief from the dystonia. Also, I have researched DBS and it sounds like I could come out of the surgery with some other issues such as balance problems, speech and even personality changes and no guarantee that it will stop the dystonia. I have tried baclofen, didn't find it made much of a difference. Ativan and Clonazapam seem to help, I do not take on a regular basis, only when I am really distressed. I try to ride it out and once the sinemet kicks in I get relief. I know what you mean when you say you can feel it coming on and when it lasts for an extended period of time it is very uncomfortable. It seems to wear me down very quickly. I too have it down my left side, it wakes me up in the night and is usually bad when I wake up in the morning. I take my meds in small amounts and often throughout the day trying to balance the dopamine level to avoid spikes which trigger the dystonia.

Share this post


Link to post
Share on other sites

Thanks to Mark and Evon. Since posting this I've seen my MDS who is now encouraging DBS surgery w/in the next few months. He also backed off on the Sinemet a bit. Now, I'm taking 2 tabs every 2 hours along with all of my other meds.

Mark, you were the one to lead me on to baclogen and it is a wonder drug when it comes to keeping my muscles as relaxed as possible.

Take care,

Sean

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
Sign in to follow this  
Followers 0