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  • Survey and Discussion: Botulinum toxin injections for cervical dystonia
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Treatments for dystonia

Survey and Discussion: Botulinum toxin injections for cervical dystonia

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avatar Lee__R

Lee__R

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05/15/2019 at 6:27 PM

Good advisor

avatar Lee__R

Lee__R

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Last activity on 04/03/2020 at 5:04 PM

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1,337 comments posted | 20 in the Treatments for dystonia group

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I also had the procedure and ordered the drugs. I had a botulinum injection 5 days ago. All I feel is like other weakness and injection sites. However, there is currently no proper effect.



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avatar Amsluvsfun

Amsluvsfun

08/08/2019 at 5:56 PM

avatar Amsluvsfun

Amsluvsfun

Last activity on 01/11/2025 at 9:23 PM

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9 comments posted | 9 in the Treatments for dystonia group


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I go to physical therapy twice weekly and it’s been worth every minute/dollar. Here’s the “regimen”.

moist heat for 10 min....Physical Therapist then does about 10 minutes of Myofascia Release on my head and neck , following that, Massage for my neck, shoulders and trapezoid muscles and then some time in the gym to work on my balance.

The massage really does wonders and I walk out without neck pain that lasts for two or three days...and then I go back!  I don’t see terminating any part of PT for a long time, if ever.

No Botox for me.

 

 

 


Survey and Discussion: Botulinum toxin injections for cervical dystonia https://www.carenity.us/forum/other-discussions/treatments-for-focal-dystonia/survey-and-discussion-botulinum-toxin-injections-for-cervical-dystonia-985 2019-08-08 17:56:24

avatar Awatchman

Awatchman

08/13/2019 at 2:18 PM

avatar Awatchman

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28 comments posted | 23 in the Treatments for dystonia group


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 14 days later....the only effect is right hand and right arm weakness. No effect on dystonic movements. Dr. notified. Next step?????


Survey and Discussion: Botulinum toxin injections for cervical dystonia https://www.carenity.us/forum/other-discussions/treatments-for-focal-dystonia/survey-and-discussion-botulinum-toxin-injections-for-cervical-dystonia-985 2019-08-13 14:18:27

avatar Amsluvsfun

Amsluvsfun

08/16/2019 at 11:36 PM

avatar Amsluvsfun

Amsluvsfun

Last activity on 01/11/2025 at 9:23 PM

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9 comments posted | 9 in the Treatments for dystonia group


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 Has anyone else tried regular massages for your neck and shoulders?


Survey and Discussion: Botulinum toxin injections for cervical dystonia https://www.carenity.us/forum/other-discussions/treatments-for-focal-dystonia/survey-and-discussion-botulinum-toxin-injections-for-cervical-dystonia-985 2019-08-16 23:36:43

avatar Lee__R

Lee__R

Community manager
09/10/2019 at 4:10 AM

Good advisor

avatar Lee__R

Lee__R

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Last activity on 04/03/2020 at 5:04 PM

Joined in 2018


1,337 comments posted | 20 in the Treatments for dystonia group

2 of their responses were helpful to members


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@Awatchman‍ what was the doctor's suggestion after learning the botox was unsuccessful on the dystonic movements?


Survey and Discussion: Botulinum toxin injections for cervical dystonia https://www.carenity.us/forum/other-discussions/treatments-for-focal-dystonia/survey-and-discussion-botulinum-toxin-injections-for-cervical-dystonia-985 2019-09-10 04:10:09

avatar Awatchman

Awatchman

09/10/2019 at 8:59 PM

avatar Awatchman

Awatchman

Last activity on 03/26/2020 at 5:40 PM

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28 comments posted | 23 in the Treatments for dystonia group


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The only suggestion he could give me was an anticholinergic. But this has a side effect of short-term memory loss. That will not work for me in my line of work. Back to the drawing board. Looks like brain and hand training for me, which I will do myself with the help of the Lord.


Survey and Discussion: Botulinum toxin injections for cervical dystonia https://www.carenity.us/forum/other-discussions/treatments-for-focal-dystonia/survey-and-discussion-botulinum-toxin-injections-for-cervical-dystonia-985 2019-09-10 20:59:38

avatar Lee__R

Lee__R

Community manager
09/18/2019 at 3:06 AM

Good advisor

avatar Lee__R

Lee__R

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Last activity on 04/03/2020 at 5:04 PM

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1,337 comments posted | 20 in the Treatments for dystonia group

2 of their responses were helpful to members


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I am sorry to hear that @Awatchman‍... I would be curious to see about others possible success with natural or alternative treatments such as acupuncture/dry needling.


Survey and Discussion: Botulinum toxin injections for cervical dystonia https://www.carenity.us/forum/other-discussions/treatments-for-focal-dystonia/survey-and-discussion-botulinum-toxin-injections-for-cervical-dystonia-985 2019-09-18 03:06:22

avatar Amsluvsfun

Amsluvsfun

09/19/2019 at 3:56 AM

avatar Amsluvsfun

Amsluvsfun

Last activity on 01/11/2025 at 9:23 PM

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9 comments posted | 9 in the Treatments for dystonia group


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@Awatchman what about biofeedback? It’s worth exploring. Google neurofeedback as well as biofeedback. 


Survey and Discussion: Botulinum toxin injections for cervical dystonia https://www.carenity.us/forum/other-discussions/treatments-for-focal-dystonia/survey-and-discussion-botulinum-toxin-injections-for-cervical-dystonia-985 2019-09-19 03:56:40

avatar Awatchman

Awatchman

09/19/2019 at 11:43 AM

avatar Awatchman

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28 comments posted | 23 in the Treatments for dystonia group


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Have you tried this or know anyone who has tried this? For the focal dystonia


Survey and Discussion: Botulinum toxin injections for cervical dystonia https://www.carenity.us/forum/other-discussions/treatments-for-focal-dystonia/survey-and-discussion-botulinum-toxin-injections-for-cervical-dystonia-985 2019-09-19 11:43:25

avatar Amsluvsfun

Amsluvsfun

09/20/2019 at 6:33 AM

avatar Amsluvsfun

Amsluvsfun

Last activity on 01/11/2025 at 9:23 PM

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9 comments posted | 9 in the Treatments for dystonia group


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I tried it and it helped. It helped me slow my nervous system down thru my breath, become more aware of stressors quickly and those two things alone help a ton.   When I feel neck spasms/head tremors coming on I can usually control it to the point of stopping the spasms by focusing on my breath for a few minutes.


Survey and Discussion: Botulinum toxin injections for cervical dystonia https://www.carenity.us/forum/other-discussions/treatments-for-focal-dystonia/survey-and-discussion-botulinum-toxin-injections-for-cervical-dystonia-985 2019-09-20 06:33:42

avatar russode

russode

09/23/2019 at 6:35 PM

avatar russode

russode

Last activity on 06/12/2025 at 12:25 AM

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6 comments posted | 6 in the Treatments for dystonia group


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@gladys916 I think there are different doses of botox they can give u they start out slow and it definately takes at least 3 weeks before they start working   I get 4 shots in my neck and by week 4 it is like night and day as far as the pain.  

 


Survey and Discussion: Botulinum toxin injections for cervical dystonia https://www.carenity.us/forum/other-discussions/treatments-for-focal-dystonia/survey-and-discussion-botulinum-toxin-injections-for-cervical-dystonia-985 2019-09-23 18:35:04
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